I THINK that Vitamin D is okay for HH.....Its vitamin c that is a No No

Oh Ok. Thanks Becka. ! The Vit. C I have heard about. I think it was something I read from that Liver Dr. who wrote a book or something. But I think that general Liver health even for those with Hep. is different from we uns with HH. Or it was something to do with Kidney stones?? I have been reading so much lately it gets confusing. I hope you are feeling better today. Thanks again Becka

Your welcome!!

I am sure that if I am wrong about it that someone will speak up. That is why I love this group so much. I am still learning as well .

I have been on 50,000iu's of Vit D for over 1 year. My GI doc, hemo doc, primary care doc, dentist... everybody knows I was put on it and have said nothing. I hope it's OK :)

I take Vit D and calcium, have done for 2 years - people with HH often have a vit D deficiency, and the calcium inhibits iron absorption. Vit C increases absorption, but you're okay with the (small) amounts in foods, just no supplements or fortified with.

Forgot to mention, was prescribed by specialist in hospital, so surely is okay

Thanks everyone. I do have a deficiency of Vit. D. and the calcium sounds like a good idea too. I have recently stopped taking all meds, prescribed and over the counter , and supplements. and have started taking them one at a time to see which ones if any were causing alot of my Chronic/Debilitating internal pains that the drs can't seem to pin down to anything. So at present I am on Omega 3, Vit. B complex without C. I can't take darvacet,etc. so now its a try this and that until we find a happy medium. If that is possible. But again thanks to all of you again for all your honest advise. If you haven't guessed i don't trust Doctors. I'm a terrible patient. Not rude just don't take their word as law so to speak. Used to. Oh well I shall try to keep a positive latitude, as Bekapalooza would advise. Great Advise Becka.

I'm the same (don't take docs word as gospel). I'm lucky though, I get on really well with my HH specialist, we have a great laugh. Last week he told me I was a 'wonderful patient' and he loves the way I research everything (he also says I frighten him sometimes :-)) Good - keeps him on his toes :-)

Thanks Andrea. I don't have an HH specailist. Just my general practitioner . I think I frustrate him.. He says it is ok to take up to 4mg of tylenol a day. which is not enough pain relief for anything. He gave me tramidol to try. It is a non narcotic. Made me nausious for 3 days but it did help with the pain.. I don't care for the trade off..??
ZZDJ do you take that much Vit. D daily??? Those must be really BIG pills!!!! Thanks again all.

Beckapalozza,
Vit C is NOT a no-no. Good grief, it's necessary otherwise you can develop scurvy! It's just you don't take Vit C with meat since Vit C increases the iron absorption.

Exactly!

Yup that is why I said correct me if I am wrong....You guys are awesome!!

Nahhhhhhhhhhhhh... the 50,000iu of Vit D is a small dark green gel type cap. Like some of the others, I also take calcium (just started 3 weeks ago), as well as magnesium & zinc. (zinc was suggested by my hemotologist).

Because I have been reading the "Exposing The Hidden Dangers of Iron" by Dr. E.D. Weinberg I'm going to ask the dr next week if I should also take B complex.

You might want to read the Tylenol warning about your liver...

http://www.tylenol.com/page.jhtml?id=tylenol/news/tylenol_liver_health.inc

and other medications which contain Acetaminophen, on page 2 of the above link...

http://www.tylenol.com/page.jhtml?id=tylenol/news/acetaminophen_liver_damage.inc

On page 71 of the book the "Iron Disorders Institute Guide To Hemochromatosis" they warn about Acetaminophen. Also, on page 80 of the same book, they warn about Aspirin because of the risk of stomach & intestinal tract bleeding in addition to an increase in cardiovascular event (heart attack & stroke).

Soooooooooooo, I guess we just need to ask our dr's which is the lesser of the evils and what might be an alternative for us????

Tylenol.com

click on safety at the top of the page

Hello everyone...just joined. Don't trust doctors either...trying to research diet and figure out what supplements to take. I also have the MTHFR gene mutation and am on Methylcobalimn and folinic acid for that.....I have been on a soy free, gluten free and dairy free diet for 8 years because I have sensitivities to these foods. Trying to see if Celiac disease is somehow connected to this. I have read about many people with both HH and Celiac.....