Thal minor - what vitamins should i take?

Hi,

I have Thal minor (HBH).  I am taking 1mg folic acid tablet a day.  Now I would like to add some daily multivitamins but all seem to have iron.  I found a few brands which don't have Iron in the market but they all focus to stress release and stuff.  Those have several vitamins, mainly b-complex and E but not as many as a brand like Centrum.  Unfortunately I don't see that Centrum produces special vitamins for us Thal paitients.  Only they have without iron is for 50++.  Please kindly advise me about multivitamins names that are suitable for me. My Hemoglobin level is about 10.2,  went down from 11. somethings though.  I hope it is not too low.  I feel very ok though.  One more thing I wanna ask is - I take  1000mg Vitamin C everyday.  What I want to know is if it is too much for me, especially when I have Thal.  I still feel good but I dont want to have major problems later.  Thank you everyone.

Hi still_crystal ,
 
  To the Family ,I hope you will find all answers of your concerns and question and you will find this community helping,caring and kind hearted .... its your own forum soo dont feel free to ask anything, wat you want to know abt ,  and dont hesitate to share wat ever you want to share with us ... i hope you will find this site a Big relief to the worries ...

sorry, i m not an expert but i m sure that other senior members and our Andy will help you ... keep checking and stay in-touch with us ...

Best Regards
Take Care
Umair

Welcome to the site,

HBH is a condition, which needs attention and I think it is a good sign that you want to learn more and take care of your health before problems show up.

From :- http://www.thalassemia.com/alpha_thal_3.html

Hemoglobin H does not function as a normal hemoglobin and has a high oxygen affinity (holds onto oxygen longer making it unavaible for use by the body), so the measured hemoglobin in these children is misleading. Individuals who have Hgb H generally have a persistent stable state of anemia, which may be accentuated by increased hemolysis during viral infections and by exposure to oxidant medications, chemicals and foods such as sulfa drugs, benzene, and fava beans (similar to individuals who have G6PD deficiency). As the red cells mature they loose their ability to withstand oxidant stress and Hgb H precipitates, leading to hemolysis. Therapy for individuals who have Hgb H disease includes folate, avoidance of oxidant drugs and foods, genetic counseling education and frequent medical care

Do you know your ferritin levels? It might be a good idea to find that out. It seems like you are not on transfusion, which is a good sign. Also, has your doctor checked your spleen? It might be a good idea to have it checked regularly.

Screening of your partner:-
Screening for alpha and beta thal carrier for your family members and your future partner is highly recommended. If the partner is a carrier of either a deletion or point mutation affecting one single a-globin gene, there is a 25% risk in each pregnancy of conceiving a fetus with Hb H disease.

Hi..  I thank to both of you who have answered me.  To Narendra , I really appreciate your answer.  It is very helpful.  I am a little bit depressed today.  I have seen with one hemotologist for a year and she told me that I have Hb H and it can be taken care by good diet and folic acid. Today,  I went to see another hemotologist at another hospital and realized that Hb H disease is not minor, it is Thal Intermedia.  Lately I have researched about it online,  although I still don't get good answer.  So, I better ask to real life people who are patients as me. My latest hemoglobin count is 7.9 ( I recently had infection and fever). I normally have around 9-10.  This new doctor told me to take "Fer-In-Sol" which seems to be an iron supplement but my old hemotologist strongly advised me to avoid eating/taking either food or multivitamins that includes iron.  I am confused.  What should I do?  I can't find ferritin level in my complete blood test.  I am not sure if doctor has checked my spleen.  I wonder if it can get worse and turn to thal major?  Luckily I do not need transfusion now but will I get worse and need in the future?  Although I don't have any plan to get a child in 5 years ,  doctor warned me that it will probably become a big problem when I decide to get a child.  Do thal patients have better chance to miscarraige? Both me and my partner were premature babies.  He also catches flu and cold easily but never bother to find out about if he is a carrier.  I am afraid if I cannot get a child or my child will have life-threatening blood disorder. I will write more later.  I'll be glad to read anyone reply.  Any answer is appreciated. Have a nice day to y'all..

My latest hemoglobin count is 7.9 ( I recently had infection and fever). I normally have around 9-10.

As mentioned in the post above, with infection the Hb levels go down, so I think you will get back to your normal Hb levels. You might want to drink as much fluids as possible.

This new doctor told me to take "Fer-In-Sol" which seems to be an iron supplement but my old hemotologist strongly advised me to avoid eating/taking either food or multivitamins that includes iron.  I am confused.  What should I do?  I can't find ferritin level in my complete blood test.

Unless you get your Ferritin results, I do not think we can answer. Yes, Ferrisol is an iron medication, so you surely might want to avoid it until you know for sure you are Iron deficient. CBC (Complete Blood Count) testing does not include the ferritin tests. You might want to get a full Iron panel testing done for knowing your Iron tests.

I am not sure if doctor has checked my spleen.  I wonder if it can get worse and turn to thal major?

You might want to ask your doctor about your spleen, the next time you visit him/her. And HbH can not turn into thal(major) but being similar to Thal(Major), it can lead a person to tranfusion dependent as intermedia is more dependent on the clinical symptoms. You might also be able to take other drugs (like Hydroxyurea) that can help your Hb levels to maintain the current range. There are several threads on this site on it and you might want to search for it.

Although I don't have any plan to get a child in 5 years ,  doctor warned me that it will probably become a big problem when I decide to get a child.  Do thal patients have better chance to miscarraige? Both me and my partner were premature babies.  He also catches flu and cold easily but never bother to find out about if he is a carrier.  I am afraid if I cannot get a child or my child will have life-threatening blood disorder.

You definately want to get your partner tested to see if he is a thalassemia carrier. That is the first step. All your worries can be avoided once you completed if he gets tested first for alpha and beta thal carrier status. You might also be able to get counselling once he is tested, so that everything is clear for you guys. Good luck.