new thalassemia patient

Hi. im 21 yrs old and this summer i found out that i have thal minor along with an extremely low iron level. Before i got this diagnosis i was always tired and i would get fatigue with the littlest thing i would do - and some days all i was able to do was stay in bed. I went for five rounds of IV iron to raise my iron level and i am taking folic acid (which did raise my hb a little, but it is still a steady low 11-12) I also started to get muscle pain in my knees and shoulders - i dont know if this is related to the thal minor of not??
 I sometimes feel that the doctors dont fully understand or even believe what im and going though, some have just seemed to shrugged it off and tell me that the symptoms will go away and that its not that bad. But when nothing is changing and things are getting worse it can get frustrating and i dont know where to go 

Hi Michele,

Welcome to thalassemia patients and friends.  Thalassemia minor can be associated with many symptoms mild to severe.  Fatigue, aches, dizziness, headaches and other symptoms have often been associated with thalassemia. 

Iron rarely alleviates the symptoms of thalassemia minor, and in some cases can cause serious problems.  Unless if iron is proven to be low, iron supplements should not be taken if you have thalassemia.  As blood breaks down more often in thalassemia minor, iron supplements can lead to iron accumulation in organs which cannot be seen unless iron studies are done. 

Folic acid, a diet high in antioxidants, wheat grass and several other things can alleviate the symptoms of thalassemia minor.  Also, if you have thalassemia you should eat small meals every 2 to 3 hours (never go longer than 3 hours without eating) to keep blood sugar levels and blood pressure regulated.  Make sure that the snacks are healthy - apples, nuts, bananas etc.  Exercise, especially resistance exercise will help build strong bones, muscles and increase general well being.  Keeping well hydrated will help also.  Be sure to take a multi vitamin without iron, and it may be a good idea to take a b complex supplement. 

For more information, also see the nutrition and supplements section of the forum - there is a topic on thalassemia minor. 

You are not alone    Best of luck and we look forward to more posts!

Once again welcome to thalpal!

Sharmin

Hi Michele,

Because of the muscle pain, I would recommend getting your vitamin D level checked as low D can cause muscle pain. I was having the same problem and it has been corrected by D supplements. I currently take 5000 IU daily.

Hey Sharmin  and Andy - Wow thank you both soo much!!!!!!
I really felt lost for a while i will deff start look into what you have told me. I was just going crazy because some doctors would tell me that the thal minor had NO side effects/symptoms ( i know its not as sever as major, but its still something)  and then when i had a problem they didnt know what to say. and still i have one that doesnt think its a big deal. I do know that too much iron can cause damage but my iron level was below 2 and my body was not absorbing it from food  so that is why i needed to go for the IV.

Thanks again and hope your both doing well
  Michele

Hi michele
  ,

Best REgards
Take Care
Umair

5000 iu!!!! Wow, I have been taking 1400, thinking that was more than enough (my GP told me most people take 1000).  My muscles *all over* have been killing me for at least 10 years.  Now it's starting to restrict my mobility in my shoulders.  I never thought the pain could be due to thalassemia.  So you think more vitamin D could help?  I'm ready to try anything!

Kathy,

I don't know if vitamin D deficiency has anything to do with thalassemia or if it is just that it is widespread among all people and not just thals. Anyone who does not get regular daily exposure to sunshine is at risk for D deficiency and especially anyone who lives in a climate that is a colder climate than what the person's ethnic origins may be from. For example, take me. I have Italian background (Sicilian) and I live in upstate New York. the only time I feel good is when I can get a lot of sun and that isn't often in this area. No surprise to me, my D level tested at only 19 (the updated normal range is 30-80) in spite of me taking 1000 IU daily for several years and 2000 IU daily for 8 months prior to my testing. I recently begin on 5000 IU daily and with the cold weather upon us, I am thinking of raising it to 10,000 IU as my body is already feeling the effects from lack of sun. You shoukld consider being tested to see if this may be the cause of your muscle pain.

Yup, my ethnicity is northern Italy and I live in Canada so sun exposure is definitely a problem.....