Discussion Forums > Thalassemia Major

Question for Andy...

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Andy Battaglia:
Hi Emby,

By fit I assume you mean seizure. Correct me if I'm wrong. I will refer you to a previous thread on this topic. This is one of those things where we know thal minors have them but there is uncertainty if there is any connection. Please go through the posts in this link and see if anything looks like it could be a possibility. Various things like hydration and medicines are possibly connected, as are sugar levels.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1750.msg14546#msg14546

As it is almost always with thal minor, there is so little research that we can't say for sure. We always need to remember that thals are part of the general population and should be expected to have various conditions at the same rate as the general public, so it makes it difficult to say for sure that some things are the result of thal.

Emby:
Thank you Andy....I needed to know because it happened to someone I know. They are beta thal trait, had blood tests done and waiting to have a head scan. 

Emby:
Dear Andy...would like your opinion..

Our boys are taking vitamin D, the oral solution, and with this their levels pick up quicker. However, for BB once the levels are normal he switches to 1000iu daily but then it falls quite significantly in about 6 weeks- 2 months. LB's level maintains at satisfactory level longer before dropping again then they start with the colecalciferol solution again (10000iu daily).
Would you say this is a normal pattern and is it ok to take the vitamin like this continuously?

Both the boys copper levels tend to drop so they are taking supplements. When the levels pick up they stop taking the supplements and only start taking it when it drops again. 
I know it makes sense to take it this way but do you think thay should take the supplements continuously?

BB has also had reaction to blood at the time of transfusion sometimes severly though the last time was about 2 years ago. He always has pirriton and hydrocortosone (!) before tx...I am thinking that perhaps of the hydrocortosone his vitamin D level may drop faster. Is this a possibility?
Do you think he could just have pirriton through the vein instead as the other is a steroid and because he has not had a reaction recently?     

Its not fair to ask you so much when you have a painful elbow, hope you feel better soon.

Andy Battaglia:
Hi Emby,

If the vitamin D levels are dropping when switched to a lower level, you should probably raise the daily maintenance dose. Try doubling it. I am taking 5000 IU 5 days per week and my level is finally in an acceptable range after one year at that dose. My doctor said I should continue that dose, but in summer when I get a lot of sun and took no extra D, he told me to take 5000 IU once per week. Prior to that, 2000 IU daily had got my level up to only 19. My doctor wants a minimum of 35. I wouldn't be concerned about getting too much unless their levels get above 80. I also think it would be best if you found a maintenance dose of copper, rather than waiting for it to drop. Every other day of 3 times per week may prove to be adequate.
Vitamin D is depleted by steroids, so it makes sense that BB's D would drop while using hydrocortisone. Vitamin D plays a protective role in the bones when taking steroids, but that results in a vitamin D deficit, so it should be replaced. I can't say if you should stop the steroid. Talk to the doctor about this. Perhaps a trial without the steroid could be tried. In most cases, the antihistamine is enough to prevent the reaction.

Sharmin:
Andy,

Little A's vitamin D was was 93 a few months ago.  I stopped the 50,000 IU a week - but continue to give him 3000IU daily.  Should I stop this dose for a while because his levels are so high?

Thanks Andy,

Sharmin

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