Looking For Help With Thalassemia Minor. Docs Have Been Useless.

I am now 37 years of age and still dealing with the traits of Thalassemia Minor. I can't seem to ever get my Hemoglobin count above a 10. I can honestly say that every doctor - including the hematologist I have seen - has been ignorant to this condition. At 34 years of age I began seeing the hemo, and my ferritin levels and hemoglobin levels were very low. I was put on something called Ferrograd 500 which is basically iron and vitamin C. That was recently taken off the market a couple of years ago, and the hemo told me to just take some over the counter iron with a vitamin C pill. None of this ever helped me. It only made me sick to my stomach, constipated, and if I was able to use the bathroom I hate to say it, but it was black as tar.

I have lived my life feeling exhausted, short of breath, cold, pale, etc. My feet and hands are basically numb all winter, and I have a very hard time recovering from illnesses. I have had the flu for over three weeks, and I have a sore throat that just won't leave. They have taken plenty of blood, and I am waiting to see if I have mono or strep that just won't leave. However, once again, the Thalassemia trait was mentioned by my newest doctor, but she didn't say how we could work on this. Does anyone out there know if there is a certain type of hematologist that actually can help with this condition? Also, does Thalassemia play a part in recovering from illnesses? The most ironic part of all of this is that I teach fitness classes. There are days when I can barely make it through the hour, and I usually get a splitting migraine after class. I am getting desperate because of late I literally feel like I'm dying. I just want to know if there is anyone out there that I can talk to that is also going through this.





Growing up I was told by my family doctor to eat a burger every week when my mom would bring me in because I was so run down. Nice. After dealing with several episodes of syncope from needles I was told by another doc in my early thirties to see a hematologist.
vampire13 vampire13
36-40, F
7 Responses Feb 1, 2012

OMFG please stop taking iron and Vit. C! BTM causes you to overload on iron, later causing serious heart and liver disease and Vit. C helps to hold iron as well. A Hemo doc gave you this?! Shame on him! Please see my story, it has answers. Not all of them, but enough to point you in the right direction.

My wife has been completely anemic since the birth of our child (has thalassemia minor). The only thing that really worked was blood transfusions, I recommend you find and ask a knowledgeable doctor/hemo about those options.

<p>Hey folks, </p><p>Thanks for sharing your stories with BTM. I didn't know I had this trait until my late 20's. Males normal Hgb levels are 14-18. After getting a blood serum test in my late 20's. I found out that my Hgb levels were at 9-10 and the doc told me my RBC's were unusually small. My doc then diagnosed me with Thal Minor and I was like...that's why I'm always tired.</p><p>I always thought I lived a normal life. I was a little scrawny kid, but had alot of heart. I was atheletically gifted, very coordinated and excelled in sports, but struggled with the stamina part. I notice during my whole childhood, I was tired during school and all I wanted to do when I got home was sleep. It was hard to get me up out of bed..I remember my mom trying to force me up to go to school, and I didn't want to go because I had anxiety and was tired. I'm now in my early 30's and try to live a good, healthy lifestyle. I do notice that eating burgers gives me alot of energy, but I'm trying to stay away from foods that clog my arteries. Many of you posted informative nutrition advice to help our fatigue such as folic acid, OJ, Carao fruit, chloraphyll so I'd like to try some of that to help me out. </p><p>I do notice that exercise such as hitting the gym for the hour helps circulate your RBC's throughout the day and will help with energy levels. Stress does increase our fatigue, but we need to find ways to cope with stress so that we don't stress our RBC's. I do notice when I don't drink enough water I tend to get really fatigue. Our RBC's need water to stay intact and functioning. RBC's usually last 120 days, but ours prob die off earlier esp. when we are sick or have panic attacks. </p><p>Thalassemia minor does affect lifestyle if you let it, but it is manageable. I'm really blessed that I don't have anything more serious. I can function through life by taking care of myself, but the stresses of life can hit us harder than a normal person. I went through the military and nursing school trials and tribulations with this disorder so anyone can live with it..it's just a little harder haha. I'm still struggling with it here and there, but I try not to think about it too much.There are people out there with half a brain and can calculate math problems faster than I could ever imagine so I'm happy with what I have and will not stop what I don't have, which is a normal hemoglobin carrying oxygen RBC deter me from anything in life. Don't think of it as a battle, but a way to learn to live with it....it could be worse..right?! I get sleepy during class, during labs, during clinicals, but I'm not going to let a little fatigue hold me back from my goals. Ask Jesus to help strengthen and guide you through this fatigue and ask him for more energy to pull you through the day:). I hope these were words of encouragement and not something posted to make you panic...live with it, jive with it, work to alleviate symptoms like diet, exercise, support, and God..and you'll be fine my friend!</p>

Peter: <br />
Yes most doctors have no idea, even some of them tell me to take iron tablets, which is totally wrong. Only my first Doctor was helpful, non of the new age Doctors have no idea.<br />
Yeah guys i am almost 41 and i have battled with this condition all of my life, especially when i was between 6 and 18. You have to take Folic acid 5 mg for life, not 0.5mg, plus i found that Chlorophyll liquid form from a health shop or chemist is helpful for building, and helping the haemoglobin to carry oxygen in your red blood cells.I also have high Ferritn iron levels, but my other Iron levels are low. I always had very low iron levels and over the last 5 years my ferritn levels has gone above normal. My Doctor eventually told me that its part of my Thalassemia condition. I also have elevated Billirubin as well. I found regular excersice is very helpful as it gets the blood circulating better. I hope this helps, and if anyone has any more info similar to mine feel free to respond, especially why my Billirubin is high and if its part of having the thalessemia condition. Thanks

Hi guys with BTM <br />
I found that there is a fruit that can help your development of red blood cell and strengthen your immunity system . This will give you a bit better health and vitality it is called Carao and found in Costa rica this product is recommended by lots of person with BTM and they are saying that there sore bones and other symptoms are reduced and relieved. I personalty have not tried it as I am in the process of obtaining it. please try to find some. Try it and then put a blog of your results. good luck

Hi <br />
I am 45 years I have BTM and was pushing weights at the gym for ever 20 years however, now I am unable to do so due to joint pain, I must agree with Kori you must not take iron because you could cause another condition which is iron overload, I have read and agree with Kori that folic acid will assist in the production of red blood cells and look for a diet that will assist with the production of red blood cells as that is what is the problem with us, I disagree with Kori as in my experience I found that any type of carbohydrate tends to make me fall asleep soon after I eat them, I am more of a protein person as I found in my experience I still have plenty of energy after consuming a meal, but to say the least it could just be different food affect people differently, you need to try a variety of different foods and see which one make you want to sleep and which ones give you energy, and eat to what suits your body.

Hello I am 38 female and have the same condition. dont take Iron we have a red blood cell count deficiency not an Iron deficiency, of course that is just me personally some people may have an Iron deficiency as well. our Iron levels are fine its the lack of red blood cells that are the energy component oxygen carrying. is why we are tired all the time. low red blood cells equals low oxygen and low energy. all of our organs have to work harder due to the lack of blood. taking folic acid drinking orange juice helps. my body is constantly making new red blood cells because the ones I have die out faster then a person who does not have thalasemia. I do notice that the more I go for walks the more energy I seem to build over time. I get plenty of sleep take vitamins and eat foods that are good for energy. pastas, beans, peanut butter, orange juice, green veggies. stress not sleeping makes it worse. also being sick lowers our cell count as well. and it takes a little longer for our bodies to fight it. hope this help take care. ~ Kori