I would have never written this article if it wasn’t for all the emails I received about my Thalassemia in the last few years. Thank you to everyone who emailed me and entrusted me with their (often) personal story. I feel honored to receive these emails but am also a bit nervous writing about it now. I’m not a doctor or a specialist, and I don’t know everything about Thalasemmia minor.
This post contains affiliate links. Read my full disclosure here.
What I know is only a result of my research, and after visiting many specialists (hematologists) throughout my life, I’m curious and don’t settle for simple answers. I’m also writing this article to create more awareness for this topic as there is not much information out there, and doctors don’t seem to know how to advise their patients, who often have tons of questions.
The questions I have received are primarily about getting more energy, living a healthy life with Thalassemia, what to avoid, and how I ”do it” on a plant-based diet.
Wat is Thalassemia minor?
In short, Thalassemia is a lifelong diagnosis of anemia. In this article, I’m not going to discuss all types of Thalassemia, but it’s good to know that different types of Thalassemia have a different impact. Very briefly described (for me with Thalassemia minor), this means that I was born with a lifelong diagnosis of anemia that can’t be solved like other ”non-Thalassemia” types of anemia with (for example) iron supplements.
Thalassemia minor means that you don’t have well-formed red blood cells, which means you have a shortage of healthy red blood cells. The task of healthy red blood cells is to transport nutrients in the body.
If your red blood cells are small and deformed, you cannot absorb nutrients like a healthy person in the same way or the same quantities. It’s also more difficult for your red blood cells to transport enough oxygen to your organs, making you feel tired.
There is also a much more severe form of Thalassemia, which is Thalassemia major. That’s a totally different ball game, and I don’t have that. Within Thalassemia minor, you have alpha and beta, but I will only discuss my life with Thalassemia minor to keep this article somewhat clear.
In practice, this means that I will always be a bit more tired and paler than the average woman of my age (hello, forever dark circles under my eyes). Thalassemia is an inherited blood disorder that causes my blood (hemoglobin) to produce insufficient and abnormal blood (= hemoglobinopathy).
Hemoglobin is the oxygen-carrying component of our red blood cells. It consists of two different proteins, alpha, and beta. If the body doesn’t produce enough of one of these two proteins, the red blood cells are insufficiently formed. As such, they will not be able to transport enough oxygen in the body since hemoglobin is an iron-rich protein that usually transports oxygen to all parts of the body.
Thalassemia patients are born with the disease, and there is no cure for it. Thalassemia is not contagious like HIV, but a woman can transfer Thalassemia to her child during her pregnancy. Millions of people worldwide suffer from Thalassemia. Alpha Thalassemia mainly occurs in families with their roots in South East Asia, India, China, or the Philippines. Beta Thalassemia occurs primarily in patients from areas around the Mediterranean Sea (Greece, Italy, and the Middle East) or of Asian or African origin.
I was diagnosed at a relatively young age. As a baby, I was pale and tired, and after a blood test, the result was that I was anemic. I was prescribed iron supplements and almost immediately fell ill. Fortunately, my doctor at that time discovered that I had Thalassemia minor, and that’s how my father found out as an adult that he was the carrier. He never had any symptoms, but I once read that women suffer more from Thalassemia because of their menstruation. I have never taken any iron supplements after that because I know it will not cure Thalassemia (more on that later).
Furthermore, I was told that this is my DNA, it can’t be cured, I can become 100 years old with it, I won’t notice anything of this blood disorder since I was born with it and I will not be limited in my daily life. ”You can’t miss what you never had”, the doctor said.
Anemia, lifelong anemia. For me, this is the best way to describe Thalassemia. However, the symptoms of Thalassemia can vary significantly from person to person. During different periods in my life, I had more or no signs at all.
Some people only experience mild issues, others much more. Sometimes the symptoms are tiredness and overall weakness. Often I feel great. And sometimes I’m very pale, although I feel fine. I will always have dark circles under my eyes, though, no matter how good I feel and sleep. Sometimes I’m a bit lightheaded. Overall this is how I can sum up my symptoms, and I don’t know any better. I’m not limited (and don’t limit myself) in my daily life by Thalassemia minor.
However, if I don’t take care of myself, I can have more problems with my Thalassemia minor or actually a symptom of anemia. By that, I mean that I’ll feel a bit more tired and look paler.
I don’t have to stay at home or adjust my life for that anymore, though (like I had to in the past). If I had a lot of problems with my anemia, I would feel tired, but I would also be short of breath, weakened, faint easily, have muscle pain, cramps, and be more thirsty.
The actual symptoms are for the patients with Thalassemia major. Again, that is a whole different ball game. Nonetheless, Thalassemia minor can also be kind of a pain. Especially when I was younger and wanted to join the rest of the world and the ”normal” people around me and wanted to go out night after night… Thalassemia minor is then not that much fun.
It’s good to note that chest tightness, hyperventilation, a panicky/nervous feeling, and even depression can also be a symptom or rather a result of Thalassemia. I have suffered from hyperventilation for a long time, but it can be challenging to make a distinction if you have anemia. The symptoms may look alike.
Other symptoms that I don’t (hardly) experience anymore are: dull feeling/tingling in the limbs, hair loss, dark urine, thyroid problems, weakened immune system, and feeling cold and lightheaded.
I never had anemia in my life because of an iron deficiency (or even had such a thing as an iron deficiency). Luckily, I have never taken iron supplements unnecessarily ever again. When doing a routine blood test, I mention I have Thalassemia, though. Otherwise, I might get a phone call that I have anemia and need iron supplements (even if my iron levels are good!).
The danger of taking iron supplements if you don’t have an iron deficiency is an overload of iron in the blood, and this is, for example, such a big issue with the more severe Thalassemia major. Due to many blood transfusions in major patients, an iron accumulation can occur. The body can’t get rid of too much iron, and the iron quickly accumulates in the already small/deformed red blood cells, leading to severe complications.
I’ll repeat myself now, but again Thalassemia major is entirely different. And with Thalassemia minor, iron supplements will not help if Thalassemia causes the anemia and if there is no iron deficiency.
I was told that Thalassemia major patients died at a relatively young age due to the complications of chronic blood transfusions (especially iron accumulation in the liver and the heart), but this was already quite some years ago. After introducing and improving so-called ”anti-iron therapies” (chelation therapy), the prognosis for Thalassemia major patients has improved significantly.
I often receive emails from readers asking why they don’t feel any better after taking iron supplements. It’s essential to understand what causes your anemia. Do the necessary blood tests. Do you have an iron deficiency? As you often see in a mild Thalassemia, doctors sometimes confuse the small red blood cells as a sign of anemia due to iron deficiency and incorrectly prescribe iron supplements.
The decision to take iron supplements because you have anemia caused by Thalassemia is something you should discuss with your doctor and not something you should decide for yourself.
My life with Thalassemia minor
Thalassemia is not curable, but I remember my mother was doing a lot of research to look for something to give me a little bit more energy. As a child, I had much more problems with anemia than now.
For example, for years, I have been drinking Floradix (it’s also available as a supplement) with the hope that this would make me feel stronger. It’s a natural iron supplement that should support the body when feeling fatigued. It’s made from plants and fruit juices with some vitamins. I can’t say that this helped.
In addition, since the diagnosis of Thalassemia as a baby, for decades, I have been taking high doses of folic acid (only available per doctor’s prescription). I was always very precise with this and never skipped a day. At the moment, I don’t take high doses of folic acid anymore.
My life with Thalassemia minor on a plant-based-diet
A lot has changed after all those years. I’m older now and know my body much better. I have been eating quite unhealthy during my years in high school and as a student. I also got infected with a heavy Epstein Barr virus (Pfeiffer), which was not helpful. As a child and student, I was often ill. Tired, dizzy, weakened, and I got every virus going around. On some days, I would feel drained.
I have tried a lot, but what I do now works best for me. I decided it was time to look further and find answers as to how I could physically feel better with the body and blood I have. I started to focus on unprocessed whole plant-based foods after being a vegetarian for some years at that time.
I haven’t seen a doctor in a long time now, but the answer was a bit remarkable the last time I mentioned my diet to my GP. He said: “On paper, this is a tricky diet for your blood. Meat should always be a part of your diet, but since you feel so good and your blood results are good (the severe anemia is gone), my advice is to continue with this”. This gave me the impression that my doctor doesn’t know what good (diet) advice is for people like me.
I have never doubted or stepped away from my diet ever since. However, I wanted to know what Thalassemia minor is and if there is anything I need to consider. As such, I have visited a few hematologists to understand Thalassemia minor better. This has led to my current lifestyle and the knowledge that I have.
This is what helps me, what tips I have received, and the advice I have collected from specialists (hematologists) over the years:
I’m convinced that diet plays a vital role in Thalassemia. However, it can be tempting not to care about nutrition when you have Thalassemia. An overwhelming feeling arises easily where you might think: ”I’ll have this forever, so I can’t do much about it.”
However, especially with Thalassemia, living a healthy life is important. There is less room to make unhealthy choices without noticing. Nonetheless, the tiredness and often associated thoughts can make you reach out very quickly for something sweet to feel better, eat it away, or boost energy (even if this is counterproductive).
Because I have tried for years to deal with this the unhealthy way, I know that healthy eating makes a world of difference. Especially with Thalassemia, it’s important to build up a sound immune system and get enough vitamins and minerals in your diet. The dietitians and specialists I visited recommended me to eat meat, and that was the only advice I ever got. This advice never helped me.
I now pay attention to my diet that is entirely whole food plant-based (and a bit of vegan junk food once in a while); with a variety of fresh foods. I don’t drink coffee or alcohol and listen to my body’s needs. I also make sure that I don’t stress too much or too long. This also applies to my diet. When I eat a vegan cake, I enjoy it, and I don’t feel guilty about it. I also noticed that if I make an unhealthy choice once in a while, my body isn’t suddenly much more tired. It’s about the overall picture and not about the treat every now and then.
Juices rich in red beets and spinach give me a lot of energy. But also here, the same applies: an occasional juice makes no difference, but a routine does.
Gluten & sugar
There was a time I did not respond very well to gluten, so I eliminated it then. At the moment, it doesn’t affect me, and I eat gluten. A sugar addiction is also something I’ve struggled with for years. It was an ideal way to mentally and physically get through a particular moment of the day when I would feel sluggish or tired. Someone else might be more likely to grab a cup of coffee or any other stimulating drink to feel better. It’s tempting and easy, but it doesn’t work in the long run.
My GP always told me that meat is my best friend. I never understood this very well. When I asked why the answer was: iron. The thing is that I never had an iron deficiency, and I always made sure to get enough iron from other foods in my diet. Because yes, it’s certainly a good thing to pay attention to your iron intake if you have Thalassemia.
I was advised to eat a lot of meat, such as liver and steak. And I did so for many years as a child without ever noticing a difference in how I felt or my blood results. At that time, I already didn’t enjoy eating meat and ate it because I had to. Fortunately, there are also other sources of iron. Eating meat is not the only way to provide the body with iron, although iron found in meat is easier to absorb by the body.
When I started following a whole food plant-based diet, I luckily noticed a difference. The longer I was eating like this, the better I began to feel. It never made a difference to my body whether I was eating meat. I’m not implying that this approach works for everyone and a vegan/vegetarian diet is therefore not a general rule to feel good under this blood condition. But, a lot of fresh, unprocessed products with lots of vitamins, minerals, enzymes, and fibers is what worked for me.
Every day I drink 3 liters (0.80 gallons) of water. This may sound like a lot of water to some, but it helps me tremendously. I may be a little more thirsty than the average person, but I have slowly worked myself up to this amount. Water contains oxygen, and it helps the red blood cells to transport nutrients.
I once lived on two small glasses of water a day, and I ended up in the hospital because I felt so terrible. I just need a lot of water, and I’m grateful that a specialist once told me this. I feel more energetic because of my water intake, and I’m not short of breath. Especially in the morning, I flourish after my first liter of water. It makes a world of difference.
Wheatgrass is an important addition to my diet, in any form: freshly squeezed, as a powder, or as a supplement like this one here. It seems that it’s good for the hemoglobin values. Even Thalassemia major patients who drank 100 ml of fresh wheatgrass juice a day noticed benefits. Me too, so I take this as often as I can. I must honestly say that sometimes I’m a bit lazy, so I take the supplement or powder instead. It increases my resistance and gives me energy. Recently I’m also using chlorophyll for the same reasons.
A Medjool date a day also helps me when I want to feel a bit more energetic without having to reach out for a vegan chocolate bar. It’s a natural source of sugar and energy, and it also contains some fibers, minerals, and vitamins.
Good to know
All specialists have told me that pregnancy is the most normal thing in the world for Thalassemia minor patients (I don’t know if this is also the case for Thalassemia major).
You will, of course, need to inform your gynecologist and doctor so they can keep an eye on you with blood tests to be able to intervene in case your anemia becomes too severe. An at-home birth is not recommended since there can always be complications, such as too much blood loss. Therefore, giving birth in a hospital with a doctor is the best option.
If you are in a relationship with the wishes to get pregnant, it’s good to know whether the other person also has Thalassemia (major or minor). This is not a very romantic question. Nevertheless, a test is the only way to figure it out and know.
Although Thalassemia is not transmittable between people, if you ever decide to have a child with your partner, you’ll need to know whether your significant other also has Thalassemia (even if she/he feels fine).
Having the wish to become pregnant is no problem if only one partner has Thalassemia. But if both partners have Thalassemia, there is a significant chance that the child will be born with Thalassemia major, even if you both have minor. I don’t know how this can be solved/prevented nowadays because my partner has no Thalassemia, so I never had to worry about this or dig further into it this topic.
Specialists have also told me that I can’t go climb up a mountain. I was told that climbing very high mountains was considered not to be safe, but I was never given any specific information as to which height (I think this can be different for every person).
If you have Thalassemia, you have less oxygen in your blood, which can be a problem at high altitudes when there is also little oxygen in the air. This was a bit exciting during certain holidays, such as in Switzerland. I’m not taking any significant risks and don’t go up too high. If I go up any mountain, I won’t be climbing it for hours. Fortunately, I also don’t feel the need to do this.
Another specialist told me that I could go up a mountain but not walk for hours/or get my heart rate up. I’m not going to try it out, and I’m okay with this. If you want to climb a mountain, I think there is a precautionary framework that you can discuss with your doctor to make this possible.
The funny fact is that many people with Thalassemia have a low heat tolerance and often feel cold (cold hands and feet). Personally, I’m not too fond of hot temperatures since it makes me feel nervous/restless. So tanning in the sun is not something that I do or enjoy. I prefer a seat in the shade.
This is a tricky issue. Doctors are quick to say that all symptoms are normal and that you have to accept them. Or they will tell you that you can’t actually notice any symptoms because you were born with fatigue (anemia) and don’t know any better.
I agree with this if the fatigue is not too bad. After all, I indeed don’t know any better after, but if the fatigue worsens, I will definitely notice it. Especially when I was in my twenties, I suffered from the fatigue, but perhaps also because I had to deal with the aftermath of a severe Epstein-Barr virus. Staying in bed was not an option and didn’t help me either.
The fatigue is not sleepy fatigue but overall fatigue. It’s pretty difficult to explain. The fatigue will be there every day, so you have to push yourself to find the energy for (often) simple everyday tasks. Discipline and determination are then necessary. During those periods, it’s even more important to find the time and energy to cook a healthy meal and go for a walk instead of staying at home on the couch. Accept it, and don’t worry too much if you fail.
Listen to your body. Rest and acceptance is the only thing that helps. This may include more sleep for one person, and for the other, this will mean extra time to relax. If you know that the fatigue is worst in the morning and you have difficulties getting going, try to organize your morning in such a way that you have time to prepare for the day. Know where your weakness is and try to adjust your life accordingly.
Just like many other health problems, Thalassemia is also affected by stress. I have noticed a link between increased stress and fatigue, but who doesn’t? It’s difficult to indicate to what extent this plays a role with fatigue since I never knew any better, but I do notice that I feel the need to take it a bit easier after a stressful period.
Working out or doing any movement is probably the last thing on your mind when you feel tired, but it’s essential. Listen to your body and push yourself mentally if necessary, but also take a step back if necessary. Plan an easy day. Walk instead of jog. Take a nap. Taking it easy is not the end of the world, and I usually feel much better afterward! Mainly because I no longer feel guilty about it. To give you a better picture: I take about 4 times a year an ”emergency ”afternoon nap, haha. But I no longer feel guilty about it as I did before.
I don’t do things that exhaust me too much. You probably won’t see me doing Crossfit any day, but I work out six times a week. But everyone is different. A specialist once told me that I’m not a suitable candidate for endurance sports, but that is exactly what I love to do and what I’m good at. So I think this approach is different for everyone, and you’ll need to try out which activity makes you happy and what you love to do.
Don’t be too hard on yourself
The fatigue is different for everyone, but it’s there. So don’t be too hard on yourself. Many people feel depressed and incapable when the symptoms are bad. If you often feel tired, it’s pretty normal that you don’t feel great about yourself. You think that you fail or can’t join the society at the same pace as others do. You feel lazy and not productive, and for some people, this even leads to depression. I only suffered from this if I was too hard on myself. It just doesn’t work if you fight yourself or expect too much from yourself.
I noticed in high school very soon that I couldn’t party night after night without feeling the effects of it days afterward. Instead of pushing myself, I accepted it. I’m happy and grateful for my body and what it can do. Nobody (and no body) is perfect, and everyone is physically different.
It also helps to reflect on the fact that there are much worse diseases and that it only leads to disappointments if you keep comparing yourself to ”normal” people. Ok, I’m not going to party until well after midnight. So what?
There is a list of supplements that many Thalassemia minor patients take. I’ll mention all the supplements I know because they crossed my path during my research, but I don’t take all of them.
I’ve already talked about this: don’t take iron supplements before discussing with a doctor that you have Thalassemia with an iron deficiency. Red blood cells indeed carry around iron in the body, but they can only carry a certain amount of iron because they are much smaller than healthy red blood cells. Don’t experiment with this yourself or with a doctor who doesn’t know that you have Thalassemia.
I’m not against iron supplements, but I’m against taking unnecessary iron supplements because of a possible iron accumulation in the blood. If you have an iron deficiency, iron supplements are a good idea. I never had an iron deficiency and, therefore, never took iron supplements. I’m not a doctor, but after all those years, I dare to say this: iron supplements won’t help with Thalassemia and won’t make the Thalassemia go away (as some doctors say). It also won’t help in making you feel less tired. You can read here more about iron on a plant-based diet.
Even though CLA1000 is a fat, it’s known as a diet (weight loss) supplement, and I have never tried it or looked much into it. I understand that some patients take this because it seems to store energy. CLA1000 will store your food and energy better and ensure that fat is converted into energy. I would discuss with your doctor whether this is suitable for you.
According to doctors, folic acid helps to build healthy red blood cells. I get a considerably higher dose than you can find in any drugstore. For decades I have been taking this every day and have decided to stop for a while now. I don’t notice a difference in my body/energy levels.
I stopped taking folic acid due to studies that I have read about the side effects of high dosages that slightly worry me. I have not been able to find any studies as to whether these side effects may be different for me with Thalssamia minor, and my doctor couldn’t give any advice on this matter.
Vitamin D is important for me, and I take this all year round. I also regularly go for a blood test to see what my vitamin D levels are so that I’m sure I’m not taking too little or too much vitamin D. This vitamin can for example also be a good idea if you are feeling a bit depressed, whether or not caused by Thalassemia minor.
However, preventing a vitamin D deficiency has many other health benefits, so I think this is an essential vitamin. The body cannot get rid of too much vitamin D, though, so it’s helpful to know what a safe dosage is for you via a blood test.
Not only do I make sure to take my B12 supplement (although I have been at my max for years when I get my blood tested), but I also make sure that I get in all the other B vitamins too so that the formation of my red blood cells is optimal, my food can be converted into energy and that I feel more energetic.
To a certain extent, vitamin E is important for forming red blood cells. But this vitamin is especially important for maintaining and protecting the red blood cells. I get this from my diet. Like vitamin D, it’s not a good idea to take high dosages of vitamin E supplements without knowing your blood values. An excess of vitamin E builds up in the body.
I use magnesium from a spray bottle that I make myself. It works well with muscle cramps and has many other benefits for the body. I spray magnesium under my feet and make sure I especially do this when I have difficulties falling asleep. This sounds contradictory (aren’t you always tired?), but sometimes the body works pretty hard to keep it all running with those weird red blood cells with the result that I feel restless. Magnesium under the feet and lavender oil in the diffuser often help.
The emphasis on antioxidants is big. I take this from my diet and don’t take this as a supplement. A whole food plant-based diet rich in fresh fruits and veggies is an excellent way to get plenty of antioxidants.
Some people also add turmeric as an antioxidant to their list of supplements. Turmeric can be bought as a supplement, or you can add it to your diet. I’m daily cooking with turmeric in combination with black pepper to increase the absorption. Occasionally I will also buy a jar of turmeric supplements.
Zinc and copper
I don’t take zinc and copper supplements, even though this is often recommended. If my blood levels were low in zinc and/or copper, I would take this supplement, but I probably get enough from my diet since all is fine.
A specialist told me about the positive effects on physical performance and endurance when using ginseng. I don’t use this, so I can’t say anything about it. I would discuss with your doctor whether this is suitable for you.
Selenium and vitamin C
I get both of them from my diet (e.g., selenium from Brazil nuts)
I’m careful with multivitamins because this is a mix of anything and everything and often too much or too little of what I need or what I already get from my diet.
After reading about all the supplements mentioned above, I can imagine you’re wondering if you really need all of them. But as you may have noticed, I get most out of my diet rather than from a supplement. The focus is always on healthy food with various nutritions plus a few supplements such as vitamin B12 and D. All the rest is personal and depends on your blood results and symptoms.
Every day I try to focus on nutrition that the red blood cells struggle to transport in the body, such as iron. I vary a lot with the food I eat, and I also combine a lot of food (like iron) with fat or vitamin C for better absorption. But I also make sure that I generally eat a lot of fresh fruits and vegetables. Green smoothies (low/no fruits) are perfect for this. As a result, I can’t even remember the last time I fell sick. Yes, I’ll always have anemia, but my body can deal with it so much better with good nutrition, rest, and a routine.
What I know for sure is that my mental health is just as important as my diet. I have been a great proponent of a gratitude routine for quite some time. It helps me put things in perspective and remind myself of all the good things in my life. It also helps me not make a thing out of small issues to avoid stress.
Time for myself is also important (like a lot!) because it helps me build a positive relationship with myself where I stand up for myself instead of criticizing myself. Learning to love and accept myself is a lifelong journey, but at any moment, I have the choice to take a step in the right direction by simply dealing with myself more lovingly.
I often push myself. Yes, it’s very painful if your doctor tells you that you can’t notice any symptoms because you were born with it or that it all can’t be that bad while you feel so tired. But I have to admit that we have control over how big we make a problem.
As I get older, I can tell very well when I’m really tired or just looking for an excuse to hide behind the diagnosis, for example, not to work out. I, therefore, think that I probably push and motivate myself a little more often than the average person to get something done. If I don’t feel like it and think I can’t do it, I noticed that by pushing myself and doing it without overthinking, I get things done.
You’ll be amazed by all the things you can do instead of focusing on what you can’t. The book ”The 5 Second Rule” is a book that recently helped me a lot by pushing me to just do it. People with Thalassemia lift heavy weights, run a marathon, run three successful businesses, and raise four children. Everything is possible.
Although I have anemia 24/7, only a few times a year, I’ll have a so-called ”anemic episode” where I’ll feel drained. I feel worn out, and at the same time, I can’t be bothered to do anything. That’s when I know I’m too tired. I allow myself to rest completely (often, I’ll only need 30 minutes on the couch), and I’ll feel good again.
This sounds rather obvious (you’re tired, so you rest), but two extreme things are possible. You give up too quickly (and don’t realize that everyone is tired once in a while, and that’s normal), or you push yourself too hard (like me) and create unnecessary stress and guilt if you rest.
A few times a year (this can be a lot more often for you and even several times a week), it will not announce itself when I have an ”anemic episode”. So sometimes, I have no idea what’s going on. Is it my hormones? Did I work too hard? Am I depressed? After a while, I realized that the anemia was causing the issue. I adjust my workout routine a bit and make sure that I rest when I need to. I pay extra attention to my diet and water intake, and that’s about it.
During this period, I feel empty (both physically and mentally), and that’s okay. I’m no longer trying to resist this, and I’m grateful that these episodes are so rare nowadays. For example, I never had to call in sick at work, but I often canceled social activities because I wanted to have the evening to myself, and/or I didn’t feel like paying the price days after going out one night.
Surrender and it will pass much faster.
In short: rest if you feel that you need to and don’t feel guilty about it. However, try not to hide behind your Thalassemia with everything that goes wrong or fatigue. “Normal people” are also tired sometimes. See yourself as a person without Thalassemia minor. Maybe you sleep too little? Do you drink enough water? Are you eating enough? Do you work too hard? Are you socially too busy?
I don’t like to write about this and haven’t done so earlier (despite many requests) because I don’t think it’s important. I AM not Thalassemia, I HAVE Thalassemia, and I decide how much attention I give this. I don’t consider myself different or a person with less energy. While writing this article, I asked my partner if he thinks I’m different from other women my age, and he immediately said no.
You won’t even know or notice that I have Thalassemia unless you’re a family member. Many describe me as an energetic and enthusiastic woman. Sometimes a problem only gets worse if you pay more attention to it or fight against it. I prefer not to pay too much attention to it because what you don’t focus on can’t get bigger.
The above tips are personal and a summary of many years of my search for what Thalassemia minor is and to what areas in my life I need to pay extra attention to. I hope this article answers the many questions I have received in the last few years.
This article is not intended as advice but as an inspiration. I encourage you to do your own research or adjust your diet to a healthier diet and see what works for you. Because what works for me may not work for everyone. I believe every person is unique.
I hope this article is a comfort for those who feel alone or different and can find little information online because some awareness for Thalassamie would be so welcome, right?
If this article was helpful (in any way) or if you have any tips/experiences with Thalassemia, I would love to read it below or on Facebook or Instagram.
Also, for all of you who asked what I eat, I can recommend having a look at my e-cookbook The Green Bowl, which covers it all.
- https://ghr.nlm.nih.gov/condition/beta-thalassemia (photo Thalassemia)
155 thoughts on “My life with Thalassemia minor (on a plant-based-diet)”
Thank you SO MUCH for this article! I have Thal Alpha Minor, and was only diagnosed when I was pregnant with my second child. Surprisingly, I did climb a mountain (went to Everest Base Camp) and survived, and got ‘altitude sickness’ just like everyone else (not worse!). As I’m older now (everest was 10 years ago), I find myself getting tired easily and been catching infections very regularly now (with 2 young kids in daycare, it’s hard not to) – I wonder if having Thal means being prone to infections? I love your suggestions on the supplements and will try to make some changes to my lifestyle and also incorporate some additional vitamins to my diet to see if it improves my energy levels and wellness.
I’m so happy my article was helpful to you. Yes, it can definitely mean your immune system is not as optimal as it can be without Thala. A healthy diet and lifestyle makes a big difference then.
If you ever have any questions, feel free to reach out to me!
This article is really very helpful I am also having Thal Minor and feel tired easily
Thanks for the wonderful article
I have read that methylfolate is better absorbed than folic acid do ou know anthing about this
Thank you for your feedback. The issue about folic acid is not about the absorption though.
Hi, I have been reading as much as I can find on Thal Minor because my husband and our son have this. (THANK YOU for sharing!) My husband is a non-stop doer and will go until he simply cannot go any longer. My 8 yr old son is also really active and hardly sits still, but when he’s done he’s done (He reached a point in his last soccer game where he was spent and didn’t go back in the game.). Latelhy my son has been feeling short of breath whenever he stops and is still. He has recently recovered from a bad case of strep so his body is probably still trying to recover from the stress of that, but it’s never happend before. Have you experienced this shortness of breath ever? My husband says he had asthma as a child but never was treated for it. I believe it may be a condition of the Thal Minor and am seeking out a physician who can help us with this answer, but just curious if you have any experience with it? I’m assuming already being weak from the strep is making life a little harder but not seeing any help from using albuterol so curious if, like anemia, asthmatic symptoms might need to be treated differently in people with Thal? I’ve amped up the dark leafy greens and citrus and water intake. All I really know to do right now.
I’m so glad this article was helpful.
The shortness of breath can be a symtom of thala for sure. But it normally comes with being extra tired and dizzy (for me personally). Since this is not just thala you are describing here I would check with your GP 🙂
Thank you so much for writing this! I too have Thalassemia minor and can relate to so many of these symptoms. Unfortunately my doctor hasn’t really been much help, which has left me feeling quite frustrated.
Apart from the many symptoms, which quite frankly has become the norm for me, the one I am forever struggling with is a lack of energy, and always feeling tired.
My “normal” friends don’t get it when I say I can sleep for 10 hours and not feel rested. I am not defined by this condition but I so wish I could feel “normal” and well rested!
I will definitely look into some of the things you are trying! THANK YOU! THANK YOU! THANK YOU!
I’m so happy to read this! I totally feel you…
I hope my article will help you!
I am glad that I can relate with some one here. I was too diagnosed with Thalasemmia minor recently. Before reading your comment, I was never able to justify to people and link it together how I can sleep for almost 12 hours on a weekend (of course less during week days) and would still have dark circles , and would still feel tired. Now I’ve realized that its because of Anemia.
I’m glad you can relate.
Oh my, I wish I could sleep for 12 hours. I can’t even on days off. I get up the same time.
But if you can and you feel better, do sleep! It’s the best 🙂
Hi , thanks for the article, it’s really helpful.
With thalassemia minor , I am also suffering from Ankylosing Spondylitis, which include a lot of body pain mainly back pain. Those who only have Ankylosing Spondylitis , feel a lot of depressed and fatigued . You can think how I feel. I’m curious if you know anything about ankylosing spondylitis? My elder brother also had both diseases, unfortunately he died at 31 age due to stomach cancer (diagnosed at 4 stage).
It would be grateful to know your view on these diseases and if these are related in any way or not
I’m happy to read this article was helpful.
I’m sorry but I have no experience with Ankylosing Spondylitis and I have never heard of it being related.
It must be hard to deal with this on top of the Thala. If you ever have any other questions, feel free to comment.
Wishing you all the best!
Hi Bianca, thank you for this great article, it’s been such an eye opener, I also have Thalassemia minor, I found out when I was pregnant with my first son. At the time my doctor prescribed folic acid and I never investigated further. I am now 40 years old and suffer with chronic migraines, I was thinking to myself the other day that the fatigue and tiredness I feel is so immense and couldn’t all be related to the migraines. Thanks again for all the info you provided,
I’m so happy my story was helpful to you. If you ever have questions, contact me. I’m not a doctor, but I’d happy to help you by sharing my experiences.
All the best!
Hello! Your article was very helpful, thank you! I was diagnosed with thalassemia minor when i was born because my mum had it. Im in my twenties now and for the last 2 years i have been struggling a lot. Short of breath,extremely tired,fast heartbeat. My iron levels had always been low and i was taking supplements all the time, my doctors only saw the low iron and diagnosed anemia but never asked me about the thalassemia. Now my iron seems fine but i still feel very tired all the time. I spoke with a doctor who said my small red blood cells are never going to get bigger because of the thalassemia and there is nothing i can do to help myself feel better. This has discouraged me a lot. I want to visit another doctor and see how i can help myself. I also believe that the psychological aspect is very important and stress makes me feel even more tired. Thank you for the helpful article,its good to know that there are people like me out there and that im not crazy,feeling so tired all the time!
I’m so glad this was helpful in any way!
Thank you for sharing your story too.
Aoa! Your artical is great but im confused as In a recent CBC report i was diagnosed with microcytosis and hypochromasia and the suggestion was i may be have thalassemia trait and doctor advised me to have Heamoglobin ELECTROPHORESIS but that came normal. But doctor said the RBCs indices raise the possibility of thalassemia trait. Im 26.5 years and active as i play badminton with great stamina. Thanks
this is a very specific comment and I’m not qualified to answer or comment on this.
Hi can you tell if mcv is less than 80 or rbcs raised it is minor ? Triat or no should patient done with electrophoresis ?
hi, thank you so much of this article its help me a lot.i have thalassemia minor too.i always have shortness of breathing i thought its because of my asthma but i was diagnosed its thala.minor 2 months ago.i was so down and depressed i feel like i am not a normal person coz always get sick and more tired,feel dizzy.
thank you of this article,
You are so welcome Hanna! I’m happy it was helpful in any way.
I added the supplement Spirulina, a natural product, to my diet several years ago, and feel that this built up my resistance to infections tremendously. You could read about this on the net and decide if you may want to add it to your daily diet. It is easily available.
Spirulina is known for containing neurotoxins, nerve toxic contaminants so that is why I avoid it.
You can read more about it here:
I believe in the blood building properties of wheatgrass for Thalassemia ????
Hope this helps ????
Good article! I too have thalacemia minor. I have been dealing with numb and painful feet for the last 3 years and now wonder if it’s related to my thalacemia. I’m going to pursue this!
Thank you Merrill and I’m glad to read it was helpful in some way 🙂
Thank you for writing this! Every part of this article rings true for me. Tired, depressed, hair loss, dark circles, days of feeling completely drained & getting sick all. the. time. It has been difficult trying to explain this condition to my husband & others around me. He has learned that I do love to hang out & have fun, but I might disappear for a little while to re-charge. Very thankful for amazingly supportive partner.
Over the past couple of years I have been realizing how much my diet plays a roll in how I feel. I too enjoy eating a mostly vegetarian diet (I love fish!) & feel so much better! I haven’t given up coffee yet. 2pm at the office without it, I might fall asleep at my desk. Lol
Thank you again for sharing your story!
I’m so glad my story was helpful to you. And yes, diet plays a huge role. I truly believe in a fully 100% plant-based diet.
You’re welcome! 🙂
I’m so happy to find this blog. I am an adult with Congenital heart defect and Thalasemia minor. I was diagnosed first with Thalasemia ( I was 35) while trying to get pregnant and CHD 2 years ago ( I was 42). I had a corrective surgery for my CHD soon after.
Throughout my childhood, I was always being told I am anemic and had to take iron supplement for a long time. I had a very active childhood and yes, I had shortness of breath plenty of times. I passed out in a couple of occasion and completely motionless from extreme fatigue. It was awful but I had to accept it.
Your blog helps me to realize that I am not alone in this world. It’s hard to see or hear people’s reaction when I politely decline their invitation because I feel tired or not feeling well. Yes, I still have active lifestyles and the main reason for that is to stay healthy or not making my condition worse.
I’m in the process of finding a hematology ( no more oncology) to better understand my condition as I’m getting older.
Thanks for writing your journey Bianca. Hope you have a great day today!
You are so welcome Ari! Wishing you all the best!
Hi, thank you for this article. I have thalassemia minor and so does my daughter too. My wife is extremely worried about my daughter since she is just 2 years old and diagnosed with thalassemia. I used to feel fatigue and tired few years ago but proper diet and vitamin b12 with fish oil made my energy level up. Now I am all time looking for some hard work to do. Me and my wife is concerned about my daughter since we don’t know what to expect. But from her current energy level, I can say she is all over the place and can make anyone tire to handle her. Lol. We are concerned about her menstrual time situation. Can you guide us for that so we are prepared.
One thing I would like clarify here is my daughter has thalassemia minor.
You can do this via a blood test.
Hope this helps
Your little girl is doing fine and will have no major problems if she keeps an overall healthy lifestyle and diet. She might be a bit more fatigue than other girsl her age, but nothing to worry about. She can become 100 years old and full of life! That’s what my GP told my parents when I was 2.
Have you tried Blood Builder by Mega Foods? All plant based and has worked wonders for me!
Thank you! Yes, I did but it contains too much vitamin B12 and B9 (folic acid) for me. My blood is very high in those vitamins.
Dear Bianca, thank you for your very informative article on this subject.
Beta-thalassemic myself, I relate to everything you have written, including the constant fatigue. A Covid infection has left me very tired and with an even lower hematocrite level than usual, and I was wondering again about the vegan/meat diet im our cases.
I actually eat meat once in a while, in average once a month. Because I could not get rid of the “thalassemic must eat meat” mantra… My goal is to go full vegan, but I am still hesitating, partly because my hematocrite is already so low.
Thanks again for the long read. I acknowledge doctors have never been a great help regarding the topic…
You are very welcome.
I’m sorry to read you are dealing with constant fatigue. I think the fatigue should not be constant, though. Often yes, but constant fatigue is quite a different thing. Maybe you are dealing with the aftermath of Covid or some other issues that cause constant fatigue?
I think when it comes to diet, it is best to figure out what works for you while incorporating a few of my tips. Staying hydrated is an example that can only benefit you.
All the best,
I was so happy to stumble across this article! I have Thalassemia Minor and have been vegan for over 3 years (Vegetarian all my life prior). My new doctor insists that I am anemic and need iron supplements but my blood work shows I’m in an optimal range and my hemoglobin is higher than it has ever been before. She insists my Thala Minor has nothing to do with my anemia and I absolutely need these supplements. I of course declined them and started searching for diet and Thala Minor when I found your article. Looks like, based on my optimal range blood work and my diet that I am doing everything fine. This was a great read and helped to ensure I am not crazy to doubt the medical professional in this one instance. Thanks!
I’m so happy to read this Kerri! And also so glad you are doing fine and you started doing the research yourself.
Also, change doctors and ask for second opinions if they keep pushing. You only need one GP or specialist who knows what he/she is talking about 🙂
I am a carrier and I eat a huge variation of foods including lots of free range meats, organic fruit & veg as plants can contain huge amounts of dangerous chemicals. Outing you at risk for other issues.
I am a yogi and train 4 days a week, strong, healthy and an optimist person.
I agree you get to know your body with age I am 46 and would never know I was a carrier.
I think your article will be helpful to some people.
My point to comment on here, is to encourage people to live life to enjoy it, not to spend it taking loads of blood tests to stress ones self out as this could bring on huge anxiety and extreme focus on an ancient blood type that is not dangerous as a minor.
However you could disperse your voice & research (backed up by science) to assist the uk Thalassemia charity to encourage blood tests before conception, to make people aware of the dangers in the Major that is still high in the uk amongst young people who have children before testing, in Cyprus years ago you would need to show your blood tests before the priest would allow a union as two knowing carriers would be irresponsible to have a child.
Thank you for your input.
I think I actually pointed all that out in my article.
No stress aka enjoy life and don’t make it too big (mind is everything)
Testing is important to know, especially in a relationship.
In this article I definitely encourage blood tests before conception (testing in any relationship is my opinion as pregnancy is not always planned for some couples).
Again, thank you for your input! 🙂
Do you happen to have the alpha or beta version?
The bèta version 🙂
Thank you so much for this article – I have thal minor and am vegan myself, and I didn’t know half the things mentioned in this post!!
I’m so happy to read this! This is one of the reasons why I decided to write this article 🙂
Hello there 🙂 Reading your article makes me feel more aware of myself. I was told when I was in primary school that I have Alpha Thalassemia but I never knew the exact meaning of it. I always feel irritable because of the heat and the heat gives me light-headedness and headaches. My limbs get cold very easily and I look much fairer than my family as they are quite tanned. My dark eyebags are the first thing that people notice about me, due to the contrast between my pale skin. I could sleep for days but they will never get better. I was very stressed during my secondary school days. People around me felt that they are burdened by my symptoms because I have so many symptoms. I just felt that I was very different from other people and I wish that I could be living in a healthy body. I can just get really fatigued everyday to the point that I feel like vomitting and passing out. 🙁 I’m 19 and I’m still having difficulties coping with this.
I’m so sorry to read you are suffering so much 🙁
Did you try cleaning up your diet? Drinking extra water?
Hi Bianca! Just read your article. Fatigue is the only issue I’m facing, and it has become worse in the recent past. I’m a 64 year young male : ). I believe this could be due to the alarming levels of pollution in our city – New Delhi.
However, on the infection front I have been fortunate. I added the supplement Spirulina, a natural product, to my diet several years ago, and feel that this built up my resistance tremendously. You could read about this on the net and decide if you may want to add it to your daily diet. It is easily available. It truly is a super food.
Thank you for writing the article!
Spirulina is known for containing neurotoxins, nerve toxic contaminants so that is why I avoid it.
You can read more about it here:
I believe in the blood building properties of wheatgrass for Thalassemia 🙂
Hope this helps 🙂
Thank you so much for sharing your incredible story! I came across your blog by accident just searching (as I always do) on google regarding Thalassemia. Your blog gave me that missing light at the end of the tunnel. So excited I shared it with my husband and daughter and they enjoyed what you had to say.
I was told a year after moving to the United Ststes that I had Alpha Thalassemia. It was totally foreign to me but the familiar fatigue and watching my mum trying to feed me liver soup was not unusual. The next time I saw the word Thalassemia was at a museum in London, England. But I was still in the dark. I have seen countless doctors who told me to take iron while others have said that the type of Thalassemia I have will not impact me and to stop worrying, only to walk away feeling worse than when I saw them. In another light I struggle with hypertension that is very puzzling to doctors given that I eat well; am in pretty good shape, and teach Zumba. Some days the BP will register well and other days, enough to scare a TRex.
My husband and I feel very blessed for my being able to birth to a beautiful baby girl (twenty years ago) in the midst of almost dying in labour. That adversity forced me to advocate for myself and explore deeper all that I could find about Thalassemia. A good diet (like yourself) has been a huge part of my journey for years (in spite of friends and family thinking I was too picky). But now you Bianca have given me an extra incentive to continue on this path. There is definitely a difference when my body is able to utilize folic acid but it will be nice (as you have stated) to get it from food sources. I will continue to explore foods and antioxidants as much as possible, and even more so after reading your amazing story.
I want to thank so much for sharing your story and bless you!
Thank you so much for your story. I’m so happy it was of any help to you or least confirmed what you’ve already found in your own journey and research.
I think your BP issue is a separate health issue, but I can imagine it adds up.
Your comment about nearly death during child birth is new to me. All specialist have said there are no issues for child birth (for women with minor). Was your birth story different due to Thalassemia? If so, I think they were not aware of the possibility of giving extra blood (prior to giving birth). It could be that doctors have changed their protocol in the last 20 years. I never heard of any issues before or was aware that Thalassemia patients are more at risk. Or maybe it was due to your BP?
The good thing is that as long as the husband is clear of any sort of Thalassemia, becoming pregnant (with a healthy baby, so without the major version) is the most normal thing for women with Thalassemia minor.
Many thanks for the suggestion, Bianca – Merry Christmas and a Very Happy New Year to you!
You are welcome!
Thank you! You too! 🙂
I posted a comment but I am not sure if you recieved it.
Thank you for your comment. I just approved it and will reply 🙂
You are so welcome Bianca and thank you also too. Sorry for the long delay. To clarify some of your questions, I am learning some twenty years later that I had something called the H.E.L.L.P syndrome. That helped to contribute to my complicated pregnancy. My platelets were also low and I probably needed a transfusion unknown to the doctors.
Regarding the blood pressure, there is still so many unknowns for someone with my physical status. I am making to drink at three liters of water (like yourself) ????, the series of greens, and especially the importance of consuming vitamin D.
Except for the H.E.L.L.P syndrome I enjoyed my pregnancy very much. I was a runner up until I found out that I was pregnant and then stopped. I have come to accept certain restrictions that comes with thalassemia (intense hiking, high altitude, or running, etc) but most importantly still learning how to take care of myself.
I feel blessed on so many levels and I am
extremely thankful for my life and to be alive. I will continue to explore all the possibilities out there and learning more about Thalassemia.
Thank you so much again for creating this blog and sharing your journey with us. Finding it was a God sent and it has given me extra hope. All the best and huge hugs.????
Ah so the H.E.L.L.P syndrome made your pregnancy complicated. I’m so sorry you had to go through that. It had nothing to do with Thalassemia minor, that’s for sure.
I’m happy my article was an inspiration to you to keep learning more about Thalassemia and to keep on living your best life.
I wanted to say a huge thank you for writing and sharing your story on Thalassemia Minor.
I was diagnosed with Thalassemia Minor when i was in my teens but i have to say i didn’t get much information from the doctors as i have from you today. I got very ill and eventually they realized that the iron tablets they were giving me for Anemia were making me a lot worse. I remember the doctor asking “do you chew a lot of pencils?” Obviously then they realized what i had and was told it wouldn’t effect me unless i had children (which i never did) or if i went in lifts i might feel a little dizzy. I have always struggled with tiredness if I’ve been working too hard or done too much/ if i get a bad cold of if i have a heavy period. My dad was a greek cypriot but he didn’t speak much english plus i didn’t have a good relationship with him so i don’t even know if he knew he had the disease. Just recently i am finding i get a lot more tired, i am 48 years old and wonder if it is because i am starting to go through the menopause or stress and long hours at work. So, i am checking the vitamins i take and food that i am eating as i don’t want to make myself anymore tired than i am already. I need to lose a fair bit of weight so again checking foods that will help me rather than hinder me.
Thank you once again.
Thank you for this and I’m happy it helped you 🙂
I don’t understand the pencil comment though..
I’m also not sure if I understand the comment why it would affect you if you had children. They were referring to the partner I guess? That is the only restriction. He can’t have any form of Thalassemia, other than that you could have had children just like any other woman.
Haha yes some people don’t even know. My dad also didn’t know until I was born and they tested him. Some women also only find out when they are pregnant for example and they get more blood tests all of a sudden.
A healthy diet and lifestyle will absolutely change the way you feel, but indeed other factors also play a role such as stress and hormones.
Take good care!
Hi Helen and Bianca
This article is really helpful and you have explained everything on how I had felt from being a child (tired, lethargic, dizzy, dark circles under eyes) to a tee. I am now a 47 year old and felt like Helen where parents never informed me of thalassemia in the family and am going through perimenopause. I was tested when I first thought of having kids with my husband – I am a carrier but thankfully my husband (also Greek) was not.
Helen, – you may be luckily enough to find someone without this. Doctors will test you both and ask you your medical history before you embark on the journey of having children.
Bianca – thank you for this article and I will be trying Wheatgrass powder to build up my energy levels. I always feel tired even after resting but like to keep busy (having 3 young boys) with family and work. Resting feels unproductive and I feel guilty after seeing the things I could be doing, but I understand that it is beneficial for my physical and mental health. My doctor gave me iron tablets and they didn’t work on me either. I have a very green diet (but love my white meat and fish) and eat everything from scratch. I hope with all your tips, not just me, but everyone else that has commented feels the benefits. Thank you.
Kind regards Eugenia
Hi, I’m 19 and my hb came out 5.9 which might be because of my prolong menstruation and iron deficiency. In my blood tests if was diagnosed that I’ve anaemia and could be thalassemia minor too which will be confirmed once i take iron supplements and still my hb doenst recovers .I always had dark circles since my childhood and have tested many remedies but didn’t work. Also I’ve had trekking and altitude sickness and short of breath many times. Is thala minor curable I’m worried.
I’m so sorry to read you have to go through this.
To be honest your hb is really very low. I never heard of Thalassemia with such low hb levels. So I think you are having an anemia due to iron and Thalassemia might or might not play a role in that. I would not be surprised if your iron is up again, your hb will also improve. It might take some more time. But 5.9 is really very low. Even with Thalassemia a level above 10 is normal.
No, there is no cure (it is on your DNA) but it’s also not a disease or considered as one (that is why I wrote this article).
If your iron is ok due to healthy foods (I never had an iron deficiency) and your hb levels go up (which will take time) you will feel so much better! And you won’t feel sick. The only ”restrictions” with Thalassemia are heights and perhaps your partner in case you want to have children (he can’t have any form of Thalassemia). That’s it! 🙂
Take it day by day until they know more and take good care of yourself.
I have thalassemia minor. I was wondering what form of chlorophyll do you take and what brand?
I keep changing brands actually, at the moment I am taking either the liquid or tablet:
Wheatgrass is also amazing:
I have that too. You glow in your photos! I know your blog is about food but I would love any make-up tips on how to not look so tired! I have the under eye darkness too. I stopped drinking alcohol and that has helped my skin a lot.
Aw thank you so much!
What I normally use once per week is this self tanner (it’s not a toxic one and the color is amazing! it actually makes my skin glow too). Just a very thin layer to lift the color of my face just a tiny bit. I don’t use too much otherwise there’s a difference in color with my neck ..:)
That does the trick for me.
Hope this helps 🙂
Thank you so much for this article. I was diagnosed with Thal Beta minor when I was 15 and before that it was very frustrating to not know why I always felt so tired. I recently saw my doctor because I have been feeling extra tired and she suggested me to talk to a social worker. She thinks I might have depression since I am always tired and, according to her, my anemia levels are not that bad for me to feel this way. As you wrote in this article, depression might be a result of thal, but I honestly do not consider I am depressed. I wanted to inform myself well about this and you helped me a lot. What you said about not going at the same pace as society is something I have always felt. I might have depression but I am sure now that this condition is what is making me feel this way. I just need to be more patient with myself and have a better diet like you. I just really wished I could have more energy to do more things.
Thank you for your comment.
If the doctor said your anemia is not that bad I would keep the option open that there might be depression going on. Just try to take care of yourself and eat a healthy diet and I hope everything else (whatever diagnose you get) will fall into place.
Take good care.
I got my thalassemia minor from my mum’s side, with occasional anemic symptoms. I was doing some reading and stumbled across some interesting facts, studies have shown that despite alpha thalassemia minor/trait giving its carrier mild anemia, this mutation protects the carrier from the fatality of malaria. So looking in the bright side, we may be the lucky ones surviving evolution by natural selection.
Oh wow I didn’t know. Thanks for sharing!
Your article is extremely well written and very helpful . I was diagnosed with Thal Beta minor many years ago
by a great physician in Berkeley Ca. When I was pregnant with my first child , I was told that I had anemia , which was falls ( had to take lots of iron supplements Etc. ) . Like you, I was always more tired then most people, needed
more sleep , climbing was hard , being in high altitude was difficult . But since I became Vegan , I have lots of energy
I sleep better,and overall I feel a lot stronger . Like you, I eat healthy plant based diet, sometimes I enjoy a Vegan
sweet of some kind . I’m grateful for your confirmation that a Vegan diet is the best solution . Most doctors have no idea about nutrition .
I’m so glad to read this! Transferring to a whole food plant-based diet made a word of a difference for me too. It’s unfortunate doctors know so little about the power of nutrition though.
Best article I’ve read regarding my condition. Thank u
Thank you so much Trina!
Wow wow and wow!!!! Such a silent killer if you are unfamiliar with it. I went through my life not knowing I had Thal minor until the birth of my 4th child. I run 3 successful businesses and I’m always tired lol. I get it done but I’m extremely tired by the end of the day. I’ve been misdiagnosed my entire life and even overdosing on iron from a doctors prescription. Let me tell you, your article was life changing. I’ll def be drinking more water. That’s where I mess up at. ???????? I take cholorophyll each day which was a game changer. Thanks for sharing. I’m writing a book on this now. @queenshakeera
Yay you go girl!!! Would love to read your book 🙂
Hi Bianca – great article, very appreciative as I’m in the early stages of researching Beta Thalassemia Minor. My wife has Beta Thalassemia Minor (which we were aware of) and our 11 year old daughter has recently been diagnosed with BTM as well (our two sons 14 and 8 no signs but we will have them tested to know). This diagnosis came about while working through my daughter having anxiety, panic attacks (your link to anxiety and anemia connection is very interesting) and significant joint pain (knees, feet, ankles, hands). She is a very active girl, plays sports, etc. but the joint pain is becoming debilitating and very painful for her with activity and at night / overnight.
From your articles I don’t see that you’ve had to manage through “joint pain” or “bone pain” as I’ve seen commented about elsewhere but if you had any feedback, perspective or insights in your experiences that might point us in the right direction it would be very much appreciated. It’s frustrating that much of what is said regarding BTM is that there little to no symptoms. My wife’s experience with her BTM when younger also included “joint” or “bone” pain.
We’re in the early stages of researching, with upcoming medical appointments, etc. but I will be looking into much of what you’ve shared as being helpful to you (ie. wheatgrass, etc.)
Thank you for your comment.
No, I never experienced those pains. But if i would, I would absolutely try MSM powder. I have seen and heard of so many amazing cases. I take it for other reasons. But please keep in mind, I’m not a doctor so discuss this with your health care provider before you get your daughter on any supplements (especially her still being so young). Also, keep in mind the other tips about healthy foods and water intake.
Dear Mam I recently approx 2 days ago know that my son age 12 years has carrier of Beta Thalasemia minor. His Hemoglobin level is 9.9 and Hb adult 83% and HbA2 is 5.1% . I do not know much more about Thalasemia and I never came to know that any one of my family members has this disease. I read your blog and I felt your blog is really very informative . But my son is so inoscent , he don’t know about Thalassemia and it’s complications.From your blog and other sources I understood that the only way to fight Thalaesemia is Change The Life Style . But I really don’t know how can I teach my innocent son to change his life styles and his dietary habits . I hope you will soon reply your advice regarding this.
Thank you for your comment.
With tasty recipes you can sneak in some healthy foods such as veggies. Also, just see if he really suffers from it. I hardly noticed anything until the age of 20. And then discuss with a doctor if he could get some wheatgrass (pills) for example. That always works 100% with me. Even when doctors didn’t agree with me I always showed them my blood tests afterwards to prove them wrong haha 🙂 It’s amazing for hb levels.
Don’t worry too much. ”We” carriers don’t know any better and he is just as healthy as other kids his age.
Hi, Bianca, last month I came to know that my son was diagnosed with thalassemia minor Without any symptoms he had. I check him coz, his growth rate is little bit slow than other kids. So I would like to know what diet should he follow, he should use wheatgrass or not, and how long it takes.
Thank you for your comment. I don’t think that his growth is influenced by Thala. At least, I never heard of such thing before 🙂
For diet I think I mentioned all I know in my article above. If you take any supplements such as wheatgrass ask a doctor if it is safe for him to use.
How long it will takes really depends on the person.
Hope this helps.
Hello! As someone with the Thalassemia trait, I enjoyed reading your post a lot. It was like reading about myself, very informative.
I just wanted to make a comment that this portion is incorrect: “Thalassemia patients are born with the disease and there is no cure for it. Thalassemia is not contagious like HIV, but a woman can transfer Thalassemia to her child during her pregnancy.”
A woman cannot ‘transfer Thalassemia’ to her child. Thalassemia is an entirely genetic trait caused by a mutation in the Beta Hemoglobin gene on your Chromosome 11. Everyone has two copies of chromosome 11 (one from your father, the other from your mother).
If you inherited a normal Beta Hemoglobin gene from one parent and a Thalassemia version of the gene from the other parent, you are considered “heterozygous” and you have the Thalassemia Minor trait. You have mild symptoms because the other, normal gene is still working to make normal red blood cells.
If you inherit the thalassemia version from both parents, that’s when youre “homozygous” and have Thalassemia Major. You cannot make normal blood cells at all and that’s when the illness is dangerous.
That’s why if your partner does not have the gene at all, your child is safe from getting the Major illness. (Because your parter cannot provide a Thalassemia gene.)
If your partner also has the thalassemia gene, there is a 25% chance your child will get Thalassemia Major, a 50% chance they’ll get Thalassemia Minor, and a 25% chance they’ll be completely healthy with no Thalassemia. You can do genetic testing on your developing fetus to check for this the same way it is done for Down Syndrome or any other genetic illness.
Thank you for your comment and I’m glad my article was informative to you.
About the contagious part. Yes, your explanation is right but as you can tell quite lengthy and too detailed for this article.
Therefore, I chose to use the word ”can” and only explained you can get Thala via your parent(s) and not through life.
To keep this article not lengthier than it already is I also decided to explain about the chances for minor and major. And to only mention that it’s better to test a partner and be safe to make sure he/she doesn’t carry the Thala gene as well as this may cause transmission of the major version. In which case I don’t know what the approach is as my partner doesn’t have Thala.
Thanks for your further explanation though! I appreciate it!
Thank you so so much for your article! I am a carrier of beta thalassemia minor from my mothers side.
A little experience I would like to share is that whenever I workout in a class style exercise; I am usually the first one to run out of breath, feel nauseous and/or dizzy. The class style is usually HIIT or strength training and most of the time I realize that I hit the limit way too early and have to take a step back or walk out of the class.
To add to my problem, I had my gallbladder removed last year at the age of 23 due to which I have a hard time digesting fats and carbs; thus losing the essential vitamins needed throughout the day.
Are there any specific vitamins/minerals you would recommend which have helped with keeping you awake/focussed throughout the day and less weaker at the gym?
Thank you for your comment.
I can’t give you an advice on this topic since I don’t have these issues and I also don’t have my gallbladder removed so I can eat fats and carbs. I’m also not a doctor.
The only thing I can come up with is to drink more water, and maybe not to exercise first thing in the morning before breakfast? But you know it’s all very personal. One will do very well doing cardio and the other prefers weights. I know specialists say cardio is harder for people with Thala minor, but I love cardio exercises. Put me on a treadmill and I can go on for hours! So it’s all really personal. At the moment I prefer to work out at noon or later. And I always drinks tons of water every single day.
When it comes to staying awake/focused during the day. I don’t have these issues either. Are you eating enough? Did you get a general blood check? Are you over exercising?
There could be so many reasons for the above, maybe even not related to Thalassemia. Whatever you do, listen to your body 🙂 Be gentle.
All the best,
Thank you very much for your article! Let me share my story. I am a carrier of beta thalassemia trait. I came to know it when I was 29 years old after my current PCP advised for further blood test when my original test shows little Iron deficiency. Many time during my life when I did the blood test , it shows a minor Iron deficiency in blood and so every physician just thought that it was Iron deficiency anemia recommended to include Iron rich foods in the diet but no one predicted it might be a thalassemia. Current Hematologist says that I can continue my normal life throughout and don’t recommend any treatment or supplements.
From my childhood I used to always feel fatigue/low energy quickly compare to my friends at the same age. Most of the activities whether its physical or in my studies I have to put 25% more effort. I do not use to understand whats going on for me and every one around me just gave free suggestions to me to eat more and more. Even my parents just thought they should include some more healthy diet and this goes away . As I grep up my energy levels increased more and relatively at this age (31) I don’t feel must fatigue. But some activities like long distance running, HIIT, etc I cannot perform in par with my friends. Although this difference I see is relatively less.
Other noticeable thing is that I am lean since my child hood. I was doing muscle building since couple of years, but I see that the rate at which I add muscles is very less compared to others. I had to work harder to gain a little.
I guess that this may me due to less oxygen carrying capacity in the blood.
Thank you so much for sharing your story with us. I’m not sure about whether it’s more difficult to build muscles due to less oxygen in the blood. I haven’t noticed this. Do you know if there was ever a study done on that topic?
Lifelong vegetarian and moving to veganism.
I am the same…………………..and the best advice is when you need to rest, REST.
Don’t feel guilty and surrender and the episode will pass quicker.
Yes the fatigue will come at the worst moment when you want all your power and this is the trickiest thing. Living with minor can be a problem and no doubt when you feel good again you will go for it.
It is a competitive world and the pressure is always on. I find much of the problem remains in the mind as you sense your anemia coming, your symptoms, when you are strong and recovered and the general cycling of the highs and lows it can bring……it is your thing, in your mind and you must do the best you can despite the demands modern life puts on you. I get the brain fog and loss of focus and drive but I have an underlying craving to excel so this can put a demand on my progress in life. When I have intense physical demands I can be down for 2 weeks afterwards. However when I routinely exercise anaerobically and cycle I feel benefits to stress and strength levels. Vitamin D deficiency is often a problem…… I was off the lower scale and for how long I don’t know….probably for most of my life . I get varying symptoms and they are evolving with age but I put most of them down to the anemia and cycles of issues and expect organs and the bodies systems to be affected. Writing this puts me at ease as it reminds me not to expect to be 100% like others. It is only since the internet that this awareness is out there and this article is excellent information. My closing advice would be to get sunshine or even occasional sunbeds for natural Vitamin D synthesis and try to change your lifestyle to avoid those major demand periods……….difficult I know but remember I am the same and there are millions with it too. Get as healthy as you can and get your routine that works for you. Most GP doctors want you out the room so don’t expect any attention from them!
Thank you so much for sharing your story with us. I totally agree with you on the vit D!
Thank you for making this article and sharing it to the world.Just last month I was diagnosed with beta thalasemia trait,and I have been reading articles that might help me and my kids (I think I have pass on to them) and your article has greatly help me understand more about this condition. I’ve been miss diagnosed with iron deficiency since I was small, and been taking iron supplements for years. I agree with you that diet plays a vital role and we should avoid those food you’ve mentioned. I’ve tried kale mix with pineapple smoothie and felt great after taking it.Hope this would help too. God bless ….
I’m so glad this article was helpful to you Buena 🙂
Many thanks for your informative article.
Since the start of puberty I have suffered from fatigue and was pumped with iron tablets. I have the circle round the eyes and am always cold to the point that it gets on my work colleagues nerves – when I’m cold I can’t think clearly and do get a little slow and confused.
It wasn’t until I was a kidney donor that a full intensive medical screening was done and it was confirmed that I have Alpha Thalassemia Trait. It was also discovered that I have a heart condition called Tricuspid Valve Regurgitation which doctors have said could be linked to the anaemia.
Growing up I have suffered from social anxiety and thought this was down to being an introvert. I can take to my bed for days, especially following an overwhelming event. I too can’t manage with late night parties so I’m always first to arrive and leave.
I’ve had two children by emergency c-section as I don’t dialate; my babies were smaller than expected despite being overdue and me and my husband being far from petite people. On inspection of my placenta it was considered that they were perhaps not getting enough nutrients, but the NHS didn’t offer any further testing. Recently discovered that both my kids (now adults) have the trait.
As GPs do not know too much about it and don’t link symptoms to it, I fear that a lot of good research is being overlooked. I’m keen to know if there are any UK support groups that you or anyone else know of?
Best wishes, Mel
Thank you for sharing your story.
I hope someone will be able to answer your question since I’m not aware of any support groups.
Your article is very true. I was diagnosed at 7 and when I had my only child i had extremely blood loss(5 day stay in hospital). Funny thing is I had 2 blood transfusion due to this and felt the best I ever did in my whole life. My hemoglibin is usually 9-9.8 but after that I was a 12-13. I felt AMAZING even if for only 4months until it went back to normal. Circles around the eyes, occasionally dizzy and short of breath and extreme tiredness if I don’t take care of myself. I only drink about 4 beers occasionally and have to make sure I stay hydrated. No one really understands how the tired part is. So it ducks when ppl think your being lazy. Forget upper body strength i have none as my arms tire easily. I was Told this is due to lack of oxygen to muscles. All in all I’m ok if I take the proper steps but me and my daughter (15 and was DX at 2 as I had her tested) definitely feel and look the effects during that time of the month.
Thanks for sharing this!
I think this is very relatable for many of us.
I for sure have absolutely no arm strength lol! But excersice helps.
I never had a blood transfusion, but always wondered how it must feel to have a hb level of more than 12 🙂
I have thalassemia minor and I just wanted to share how it did effect me during pregnancy. With both of my pregnancies I treated with a high risk OB because my hemoglobin levels would drop so dramatically when I was pregnant. They wanted to keep an eye on me. In the end, I did not have any complications with the birth or the labor, but I really felt exhausted the whole time I was pregnant. It made my normal crappy feeling seem so much better. LOL
I just wanted to share that this was my experience being pregnant, if someone else is feeling this way they should talk to their doctor immediately. But it happened to me too.
Thank you for sharing your story. I believe exhaustion is a general pregnancy symptom, however with Thala minor the hb levels can drop indeed below the norm. But they will always keep an eye on that and take action if necessary. All for the baby, ’cause we will survive 🙂
Yes, always go to a doctor to keep an eye on your blood levels when pregnant. To be honest I would even do that without Thala minor…
Hats of to you Bianca!! My sister had passed away in 2017, due to multiple organ failure; and she had Thalassemia Major. I had written a book and got it published and many people are interested in reading my book. Your words inspire many people, including me.
I’m so sorry you have lost your sister. Like I said in my article major is something completely different than minor and I can only have respect for people having to deal with Thala major. It puts things in perspective as well for people with Thala minor.
Did you write a book on minor or major Thala?
Great article, thank you for taking the time to write it. I’m from the Durham in the uk, aged 44 and lived with this all my life, before I was diagnosed I had a couple of bad episodes at 8 and 10 years old. As I’m getting older I need to learn more about nutrition and looking after my self better. I’m quite fit, I run and exercise a lot. I always feel however that something isn’t as good as it should be and that this trait limits aerobic capacity and endurance no matter what we do. Another big one for me is early mornings, no matter what I do I always feel dreadful 1st thing (any advice on that would be greatly appreciated ????). Great points on not feeling guilty and blaming self (I do that a lot).
Thanks for sharing your story on this.
I actually don’t notice the aerobic limitations, but every person is different.
Ah some people are just more likely to be morning person than others. That’s my two cents on this 🙂
Thank you very much for taking the time to reply. You could say I’m definitely not a morning person ???? (Something to work on)
Yes, I had written about Thalassemia Major
Hi Bianca! I have Thal Minor and have given birth to 5 healthy children. My pregnancies and birth were not complicated. I took 4 little folic acid pills a day during the pregnancy. My blood pressure was shockingly low, but I didn’t really feel it much except for the very occasional faintness.
I was just researching how much folic acid to take now that I am not pregnant. Do you have a quick answer?
To be honest, I never took the folic acid regularly before pregnancy and didn’t notice much difference when I did. Still, it seems to be only recommended supplement. So I will be good and continue taking it forever.
My husband is vegetarian and I will consider it too! Do you have a quick reference list of good foods to focus on?
I see: beet, spinach, wheatgrass, dates, brazil nut.
That is great to read! 🙂
I mentioned shortly folic acid and that’s all I know about it. I’m not sure why doctors recommend it (although my current GP does not recommend it) but I also read some negative stories about taking folic acid. I’m not a doctor and I follow opinions of other doctors. I don’t take it at the moment.
I will come back to that list!
It’s cool reading about your experiences. I too have thalassemia , except it’s thalassemia major (Hemoglobin H disease). By all measures ,I live pretty normally , but I have to watch my diet all the time to avoid eating iron heavy foods , as well as avoiding a long list of drugs and substances because they can make me go into anemic shock apparently. But aside from that, Im prtty happy i dont have to go for transfusions. Although being in the medical field , i do read up on the latest findings and diagnoses of my disease and it makes me anxious sometimes to know that when i grow older ( currently in my twenties) , that complications will arise. Even more so , I get concerned when it comes to partners , someday i might be a burden to them.
Thank you for your comment. All my respect to you with Thalassemia Major! I can’t even begin to imagine how that must be like.
This article was very helpful and i could relate this as i have Thala minor too. I recently have started taking iron supplements, but after what you have shared experience i am confused confused whether to continue taking or not.
Please suggest will it be alright to continue iron supplements? besides that i do take multivitamins too….
I think it’s best to check your blood levels to see if you need iron supplements.
Hello, I just read your article and found that you have some very good tips. I am in my mid 40s and just found out that I have Alpha Thal. I have always been told that I have the sickle cell trait and anemia so my iron deficiency has always been called sickle cell anemia. So imagine my emotions when I find out in my mid 40s that what I have is another entirely different hereditary disease that I haven’t been getting any advice or treatment for until the last year or so. So my one question for you is how has having your monthly cycle affected your health? I ask because for the most part of my life mine has been normal and hasn’t affected my health or energy. Now in the last couple of years I have felt a fatigue so draining that it takes me longer and longer to recover from each month. So much so I’m considering a hysterectomy to see if it will ease my fatigue symptoms. I’m not asking for advice or anything, I’m just wondering if anyone else has ever had this type of symptom from this disease. Thank you
Thank you for your comment. I’m sorry to read your monthly cycle is giving you so much fatigue.
I personally don’t have this. I’m just a bit more tired during that time of the month like most women.
Did you get your blood work tested? Maybe it might be worth to discuss this with your OB-GYN to rule out abnormal periods?
Dear Bianca, thank you for your very informative article on this subject.
Beta-thalassemic myself, I relate to everything you have written, including the constant fatigue. A Covid infection has left me very tired and with an even lower hematocrite level than usual, and I was wondering again about the vegan/meat diet im our cases.
I actually eat meat once in a while, in average once a month. Because I could not get rid of the “thalassemic must eat meat” mantra… My goal is to go full vegan, but I am still hesitating, partly because my hematocrite is already so low.
Thanks again for the long read. I acknowledge doctors have never been a great help regarding the topic…
Thanks for sharing your story and words of encouragement. Could you please help with a list of foods you eat with this condition. I also have thal minor and want to go on 100% plant based diet. I have been eating spinach, kale, beans as someone advised. Do you think this is proper. Thanks
I will soon update my food recommendations here.
I have symptoms of hyperthyroidism (moderate tremor, palpitation, brain fog,etc) and took thyroid blood test 3 times however my thyroid level is normal. Based on the result, my hb is quite low (9.7) and my doctor assumed me to have IDA ( iron deficiency anemia), prescribed me with folic acid and did not do more test. I still don’t feel better and only getting worse everyday. Then I decided to meet another doctor and she suggested to took another blood test (anemia profile and thalassemia). I have thalassemia minor and my ferritin level is high, 784 ( normal 10-291). Do you have any tips to reduce ferritin level naturally and is it ok to take fish oil supplement? I stop taking folic acid at the moment. And how do you deal with palpitation? Thanks
Thank you for your feedback.
Your ferritin level is very high. This can be dangerous. I would recommend to go to a doctor to get medication to bring this down. I wonder how it ever got so high though.
I have no experience with fish oil since I’m a vegan.
The palpitation and all other health issues at the moment might be due to severely high iron levels. I’m not a doctor but I would highly recommend you to go visit one.
I am a 46 years old Italian man.
I have thalassemia minor from my mother.
I honestly think fatigue is oftentimes more in our head than in our bodies.
I constantly have little hemoglobin and smaller red cells.
However, I am always full of energy.
Thanks for sharing your feedback, Riccardo!
Thank you so much for your article i finally feel related to my symptoms even do I explain it to my doctor they always tell me that I will be fine but I always feel worse every time but thanks to you and your supplement i think my life will change for better
You are very welcome. I’m glad my article was useful.
Hi,Namasthe…???? thank you for your suggestions
I’m a 29 year old man from INDIA, I have Thalassemia minor and my sister too from my father .
I’m a farmer I have been doing lots of work in the field n I dint feel as I tired. My diet is as per South Indian regular..( we use more rice n all grains)
But Regularly I get mouth ulcers n it’s heals in a week or two
Is it related to Thalassemia .. if so how I get rid of this could you help me …
N I’m planning to marry this year how can we prevent this genetic disorder to our next generation..
Thank you for your comment.
I have never heard of ulcers occur due to Thalassemia.
If both you AND your partner have Thalassemia then you should consult a doctor if you are planning a family. If only one of you have Thalassemia I personally wouldn’t worry at all. So best is to get tested 🙂
Namasthe! You are from India, but I wonder if you have Greek blood, too. I am Greek and have Thalassemia minor and also get mouth sores when I eat dried apricots at times and have learned that is a common issue for Greeks, but I am guessing it is a separate issue from the blood trait and more like an allergy that is genetically acquired. Do you have any idea if you have consumed dried apricots within a few days before the mouth sore begins?
I’m sorry. I’m not Indian, nor Greek and nor do I have a reaction when eating dried apricots 🙂
Does anyone have worsening of thalassemia bets trait fatigue with prescription meds such as oxycodone or high dose ibuprofen? What about anti nausea meds or antihistamines like Dramamine or Benadryl? I could not find any info on what meds are good or bad in the comments here. Thanks for your input
Great article. Thank you for writing it. I’m a beta thal minor. I also follow a whole foods plant based & gluten-free diet, and it’s been amazing for me.
I’m going to share this article with my wife, because you explain everything much better than I could!
Thank you so much for your feedback. I’m glad it was helpful and I hope it will be a good read for your wife too.
Have a good day!
Thank you Bianca, great article ! And your comments agree with what the Mayo Clinic says, especially taking Folic Acid which I find has helped me. Your other suggestions are excellent. Thank you and wishing good health to everyone here !
Thank you for your feedback 🙂
As I mentioned in my article, I’m currently not taking (synthetic/supplement) folic acid. Only in its natural form via my food, as I read worrisome studies on the risk of taking folic acid.
Thanks for your invaluable sharing! Please check out kangen drinking water by Enagic, if you have not!
Where to start…so much in this thread has been interesting to me!
I have always had cold hands (not sure about the feet as I don’t usually feel those) and it never occurred to me that it could be due to thalassemia minor. Ditto getting dizzy in high up, fast elevators (first time I experienced it was at the Hyatt Regency in Honolulu when our room was on the 38th floor). Ditto passing out when I got my period (only happened twice and both times, I figured it was from the pain). Ditto dark circles under the eyes (which I think I had worse as a young child; don’t notice them much as an adult but maybe I have just become habituated to them). I also never realized that my iron level in blood tests is normal (I just checked my last physical’s blood test results and it was), but somehow I am still anemic (and have become worse there since becoming vegan)…I always figured I was low in iron and just couldn’t take supplements as the iron goes to my already huge spleen (common for people with T-minor) as it can’t bind properly to the blood cells. Am confused as to how the iron is in the blood but not the blood cells…weird.
In months 2-4 of my pregnancy, I was one who *did* become exhausted (like I never knew, and I thought I knew exhaustion starting just after my 21st birthday when I was in graduate school and had the Miami sunshine and still slept away most of the day…I seriously was likely asleep more than awake!). I barely had the energy during those months of my pregnancy to get up to use a bathroom! Prior to being pregnant, I used to think it would be sweet to be able to be on bed rest and just get to sleep all day (as opposed to “just” most of the day), but boy (the baby was a boy), was I wrong. I became more anemic while pregnant, as expected, and one of the GYNs in the practice I then used told me I should go on iron supplements, and I explained why I wasn’t doing that because I had thalassemia minor, and then he said I would have to get blood transfusions when I gave birth!
I asked the doctor, “What medical school did you graduate from?”
He seemed offended (understandable, I guess) and gave the name of one in PA. I then asked, “And did you graduate in the top half or the bottom half of your class?”
He refused to answer, which answered my question. People might feel this was super rude or bold, but my view on it is that bringing a life into the world is far more important than getting most desk jobs and yet nobody thinks anything of employers for desk jobs asking for a resume with school and GPA and/or class rank (often noted as summa cum laude, magna cum laude, or cum laude). And truly, I have come to feel this way about *all* doctors as we are putting our lives in their hands, are we not?
My father was named Pythagoras and he would see if a doctor knew the Pythagorean theorem to decide if the doctor was smart enough to treat him. So perhaps I come by this doctor interview honestly. 😉 But I jest a bit as he didn’t really ask every doctor he had, and I have never asked a doctor resume questions other than the one who wanted to put me on iron pills and give me a blood transfusion when the baby came. But I will leave a doctor when I have evidence that the “professional” isn’t up to snuff.
Which leads me to the suggestion that a hospital birth is best if you have this blood trait. I switched from a hospital birth plan to a midwife in a maternity center during my 7th month of pregnancy and am *so* grateful I did. I had a 32.5-hour labor and would have been labeled “failure to progress” and C-sectioned had I been in a hospital. Instead, during my long labor, I got to shower with my husband, take a whirlpool bath, eat pizza with my husband and parents and a friend (funny side story…my father didn’t know which bedroom was mine and when he left to get the pizza, I was the only person in labor there, but when he came back, a mom delivering her third child was in a bedroom with her legs in the air and my father barged in and yelled, “Now how the heck are you going to eat pizza with all this moaning and groaning you are doing?” Having not seen me naked as an adult, he didn’t recognize the naked woman was not his daughter, and I am glad he never barged in on me), and go home at around 7:15 AM after a 12:30 AM delivery to throw our son a true *birth day* party that night at dinner (friends and family picked up the cake I ordered and brought food; I just did decorations).
Oh, and I *did* have failure to progress…the midwife I had practiced for two decades in the UK and had learned how to manually dilate mothers who were not progressing on their own. She broke my water after a day of labor and when I was still stuck at I think 8 cm, she used her hand to pop me to 9, and then later, from 9 to 10. I don’t know any doctors who do that. And I had zero pain killers and actually enjoyed my labor (the delivery was only 17 minutes and not quite as much fun).
Back to the issue of sleeping a ton, I suffered from feeling like I needed a ton of sleep from age 21 (at least I had plenty of energy when in college, thankfully) until a doctor tested my vitamin D level and found it to be around 12-13! I started on D3 supplements and felt I needed to nap far less, but still felt I needed to sleep in until 10 AM or later (I have always been a night owl). I started omega 3 and B12 supplements around the same time and also suspect those help (especially the B12). When I started became vegan in March, I also felt like I needed much less sleep most days (my weekly average has always been under 8 hours every week I have had a Fitbit for the past few months, and has been over 6 hours for all but one week on vacation; usually averaging 7+ hours), and have only napped once, I think, since becoming vegan, but I one day where I completely crashed and slept over 10 hours (was also dealing with fighting off a cold, and it surprised me that I even got one since most vegans seem not to for years at a time).
As for energy and not staying out past midnight at parties, oh my gosh, I am over half a century old and I still stay out at parties past midnight and do many activities in any given day! Yesterday, I met my first college TA at a vegan restaurant for lunch and then we took a 2.76 mile walk around a lake. I then came home and did more Day of the Dead party decorating, read more of “Drop Dead Healthy” (hilarious and informative book), did some chores, and went to see a play in the city. The day prior, I met a friend at the gym and used the recumbent bike and lifted weights, went straight from the gym to play tennis with friends, went straight from there to met another friend for lunch, took the 2.76 mile walk on my own to really enjoy the fall leaves (I enjoy viewing them with friends, too, but notice them more when on my own), then met a friend at a restaurant outside to help him buy tickets to Australia and back from Hawaii using points on a trip he is doing with us next year, then met my college profs for happy hour (I only drank water and had some of the hummus platter), then was treated to dinner by a friend who is borrowing my race car driver costume for Halloween (I have dozens and dozens of costumes and friends often come to me to borrow them), and then watched TV with my husband. I won’t detail more days, but a lot of them run something like that. My husband runs more than I do, though (for example, this is his schedule for one day of the week: he works a full day at a *standing* desk job – his choice as co-workers sit, runs a curling league and competes in it, goes straight from there to play trivia with me and some of our friends, and then goes to a late night move with me and friends); he does not have a blood trait like I do.
If you are still reading, I am curious as to what prompted you to drink so much water? My husband and I and our son all are naturally poor when it comes to being thirsty and don’t drink much, though my husband has gotten better due to having had kidney stones and so upping his game and our son has gotten better due to his significant other being a big time water drinker. I still haven’t found a way to make myself drink water much, even when I drink nothing but water (don’t even have tea or coffee most days). And also wonder how you came upon being a fan of wheatgrass…I have read a lot of health books and wheatgrass has never come up in any of them that I recall.
Sorry this ran so long…I just felt like I got to know you a bit and so shared a bit too much in response. Thanks again for your article…never thought I would find anything on being vegan while having thalassemia minor and came upon this sort of by accident as I was looking up something else and thalassemia minor.
Awesome article, totally relate 100%. I almost never remember I have thalassemia and then get upset because I often can’t keep up with my hiper active boyfriend and general expectations from society. It’s hard because nobody will validate my experience but myself, it takes a lot of self confidence to acknowledge that your base parameters are not normal base parameters. I often fluctuate between extremes in my energetic levels and this leads to frequent episodes of depression and fatigue, while I feel I am more driven and motivated than most (it sounds contradictory but you learn to be like this when you have constant fatigue). I really appreciated this article because now I know I’m not alone and it’s not a character flaw somehow, it totally described my experience and reminded me to keep up the good work, be in acceptance of my own experience and be the source of validation I need for I am the only one who experiences it. And more importantly, it reminds me that my main priority is taking care of myself, both when it means “push a little bit further in that discipline to create what your health needs” and when it means “chill girl, don’t compare yourself to others expectations, validate your experience and don’t stress because the cost of that stress isn’t worth it”. Thanks for sharing!
Thank you so much for these words. They are so well put and I know a lot of others reading this will appreciate it too.
Speaking of experiences regarding Sickle cell anemia – Thalassemia and sports, high altitude, etc, you will find this real-life piece fascinating:
Thank you for sharing Konstantinos! I hope it will be helpful to some.
Thanks for the article! I’m 16 and I have Thalassemia (I think minor?) because it was passed down by my mom and I am constantly sick from the common cold and the symptoms last for almost a month, so it was great to read about your experience with it! Do you have any tips on dealing with such a weak immune system?
I personally don’t think Thalassemia causes a weak immune system, although it may feel like that. The most important thing to do is to eat healthy. A diet rich in anti-oxidants can help.
I hope this helps.
My father had Thalassemia major. He realised it very late and had to get a liver transplant. He’s healthy now. So just to be safe he got me checked for it too and turned out i had thalassemia minor.
my question is – is it okay for me to drink moderate quantity of alcohol once in like a month or two? I’ve never had alcohol before but kinda wanna try it?
There is a VERY big difference between Thalassemia major and -minor. I understand your worries, but I think they are unfounded. You should take care of your liver just like any other healthy person. However, if you think that you need extra care and advice please consult your GP as I’m not in the position/not a doctor to advise you 🙂
Hi Bianca, thank you for sharing! I too have Thalassemia- Major since I was 8months old. I came across your post because I’ve been cutting down red meat consumption for few years now and I’ve been transitioning to a fully plant-based diet this whole year. Your post is very informative I love them!—- I was wondering if you do have any more tips to go on this plant base journey as a thalassemia patient — like how you balanced your b-12 intake and such and which product you use?
Thank you for your feedback.
I don’t have Thalassemia Major. I have Minor and that is a whole different thing. And we all have it from birth (not as of 8 months for example). Just want to point this out 🙂
If you have major, you should speak to your doctor about any health related questions as this is a much more severe blood issue.
As a vegan I follow the recommendations just like any other vegan wihout Thalassemia. This article sums it up well:
As for food, I just launched an e-book with only lunch/dinner recipes that can be helpful to give you an insight as to what I eat:
Hope this helps!
Hi, i would like to thank you for sharing this helpful article about Thal minor, I also got infected with mononucleosis 2 yrs ago ,im really happy to read about your experience.:)
I’m glad it was helpful 🙂
Thank you for posting. I have beta thalassemia and without pregnancy my hemoglobin was about a 10. With pregnancy it’s going down and now it is 8.8. Doctor wants me to have a blood transfusion
What food would bring hemoglobin is quickly?
Hi Shipra, beta thalassemia minor patients are having healthy pregnancies and babies, but some women might need a blood transfusion (below 8.5 in pregnancies need a transfusion). I know it sounds scary to get a transfusion since beta minors never need any medical intervention, but there is no food when growing a baby that will bring this all the way up to a safe level. If your doctor tells you to get one, please get one. You can handle the low hemoglobin easily as a beta minor, but the baby might not be able to do so.
You have know idea how this blog has blessed me. Long story short, I am a 51 year old woman who has been trying to decode the issues that I have faced in the body. I’ve been able to isolate and identify some issues like gluten sensitivities, IBS, anemia, iron deficiency…the list goes on. But have always felt like there was “something else” going on. No major issues, but I just never consistently felt good for a long period of time, ever. So I persisted because there are no other choices.
Last month, after a routine annual physical, the doctor casually mentioned “have I ever told you that you have Thalassemia?” Me: No, what is that? Dr: It’s no big deal, just anemia. My thoughts: Are you freaking kidding me?!?!?
So I started researching and landed here. Some of the things I’ve read here make me feel as though you’ve been stalking me. Exact experiences…things I don’t even describe to people because it sounds like I am complaining about nothing, but I KNEW there were other issues with this body of mine. Thank you SO VERY MUCH for sharing. I will add some of these suggestions to my current regiment and I also strongly considering returning to the vegetarian lifestyle.
Thank you again!
Thank you so much for sharing your experience here with me. Doctors indeed hardly mention or consider this an issue, but some of us can just feel it. And some of us don’t and will never even know. It’s important to listen to your body no matter what other people say.
I wish you all the best, and if you ever return to a vegetarian or vegan diet.. I have got some recipes here 😉
All the best,
I was recently diagnosed with type II diabetes and wonder if it could be a false diagnosis due to my Thalassemia minor. I have always known I had it and have a healthy diet along with exercise and cannot believe I have diabetes.
Have you ever heard of this misdiagnosis?
I’m so sorry, and I can imagine it must have been hard to deal with. I’m not a doctor, but I think it can be hard to misdiagnose if you are referring to a blood test. As far as I know, Thalassemia minor is diagnosed with hemoglobin and a few other values, and diabetes is determined with a (fasted) glucose blood test.
Sorry, I can’t be of any more help to you.
Just to some comments, both my husband and son get mouth ulcers with certain preservatives and sugars due to beta-thala. Similar to how your body has some difficulty processing gluten, sugars and preservatives can be the same as well as other things such as lactose etc. Depends on what enzymes were under developed as a child due to being ill and unable to develop certain tolerances as a child.
My son has been having trouble concentrating at school, goes very pale yellow and ended up in hospital a couple of days ago which confirmed b-thala. My husband had the same issues growing up and often stayed home from school from being ill and weak. A lot of sites recommend not eating too many leafy greens due to iron being high in them, but I guess that’s where you would iron inhibitors. Also tea and coffee inhibit iron absorption so it’s actually recommended for those who have thala to consume as much as possible, even if its decaf. 😊
Thank you for your feedback.
I think it’s important not to generalize as I don’t believe all health issues should always be regarded as related to thala minor (such as ulcers or hospital visits).
Many people do very well with gluten, sugars, and preservatives, so even that is personal. But overall, like any other person, eating healthy makes anyone feel better, also someone with thala minor.
I also don’t see a link between ”being sick as a child”, ”enzymes”, and tolerances”. Just overall, in general, eating healthy makes anyone feel better, including people with thala minor. Other things come into play, like anyone else, such as hormones and gut health.
I’m sorry to read your son has been in the hospital. This is not common for thala minor, so keep that in mind, too. There is a difference between feeling weak and tired and ending up in hospital if you know what I mean. If anemia is causing the hospital visit because of tiredness and being pale, a blood check to check for iron deficiency might be a good option.
This leads to my last point. I’m afraid I have to disagree with your comment about iron. What you have read about avoiding iron-rich products and preventing the absorption of food in iron by drinking tea and coffee and the same time is for people with thala MAJOR, not minor. People with thala major (as mentioned in my article) are severely sick for life. They require regular blood transfusions, which leads to an overload of iron in their organs over time. As such, those people are encouraged to avoid iron in their food.
So, unless someone is severely sick with thala MAJOR and need regular blood transfusions, iron levels will be too high at one point, then it could be wise to avoid iron-rich foods.
I don’t give medical advice here and only share my personal experience, so I encourage you to talk to your GP. However, I believe that a person with thala minor has no reason to avoid iron-rich foods unless a blood test shows iron levels are very high (which also applies to people without thala).
I hope this cleared things up a bit.
All the best,
Thank you so much for थी amazing blog