Vitamin D

[Bini wife]

There is a new buzz around vitamin D, the sunshine vitamin, which is supposed to help bones among many other organs and systems. My husband and I got tested and we both had very low levels. He started taking 1200 IU and he’s been feeling better and his counts have improved slightly (from HGB 8s to 9s) just outside the transfusion range. We remembered that a couple of years ago there were some trials with vitamin D for MDS which apparently went nowhere. It’s early to tell if this is real or will be sustainable but we were wondering if anyone else has any experience or knowledge of vitamin D supplementation.

We were unable to get on the Forum for a while and it’s so good to be able communicate again.

Carmen

[Zoe]

I have heard of the studies also. I did a bit of research because my calcium is always low, and while I am too tired at the moment to explain my theory (which no medical professional would likely give credence to anyway, so it doesn’t matter :*) I decided since there was a link between parathyroid glands, calcium and Vitamin D, and energy levels, I would start faithfully taking my vitamins which have a full dose of Vit D and calcium–along with just about everything else. So my long antedoctal story is that it has made a tremendous difference in my energy levels. No longer having days when I am too tired to eat, I don’t need naps everyday, and I am able to function past 7pm.

It could be anything in those vitamin pills which is helping my energy, but I will be curious to see what my next calcium level test shows.

For whatever my late night rambling means…:*)

Zoe

[marlene]

We had John’s Vit D levels checked and they too were low. We started supplementing with 2000 iu but it till didn’t put him into a normal range. We’d like to see it at 50ng’s at least. A big part of the problem, I think, is it was not enough to compensate for the lack of sunshine in the winter months. So he’s up to 5,000iu/day and we will check it again in a few months.

This is an excellent video clip…its a presentation by a doc to docs regarding vitamin D.
http://www.youtube.com/watch?v=emjCzaHtSrg&feature=channel

There’s a lot of info at http://www.vitamindcouncil.org you may want to check out.

One last item….they found that any vitamin D tests run by Quest Labs were faulty. The results were off in that vitamin D levels were reported to be higher than they really were.

[Jimbob]

It’s been a few years for me but when my level was low, my doctor started me on 4000 IU/day but changed it to 50,000 twice a week as a therapeutic level. It made a major difference and no longer required.

btw, I will be celebrating my 5th anniversary of SCT this Sunday.

[Mary4Mike]

Jimbob,

Congratulations on your five year mark for your SCT. It does us all good to hear news of such milestones!!!!

Blessings to you, all of the doctors and nurses involved and especially your donor

Mary

[franb rars dx 12/06 age 57]

I have RARs with a HGB around 9, no treatment yet, just found out my Vitamin D level was below normal 18. I started taking 1000 u D3 and do feel better, my head feels clearer, my energy level increased, not sure if there’s a connection but I hope so!

good Luck!

[worry in nj]

carmen, i too have had very low vitamin d over the last 4 yrs. i caution that low D level can mimic anemia. mds and vitamin d can be problematic. and easily brushed aside amonongst all the other "stuff". i was diagnosed 14 yrs. ago. i am 65 now and have had transfusions, iron…wish you the best "worried in NJ ‘

[celebrations]

Hi,
shortly after beeing diagnosed with MDS 7 years ago, Vitamin D was the first "drug" I was prescribed. My hemo at that time told me we would start with a high dosis and try for about six weeks. In the leaflet of the Vitamin D package, there was marked sth about a potential effect to raise the erythrocytes…anyway it did not with me. This is my experience with Vitamin D. Good luck, maybe the effectiveness will continue!

[worry in nj]

Thankyou for Vit. D info. Over 3 yrs. off and on barely a difference. vit. d is taking on or shall i say be a wonder vit.

[worry in nj]

hi this is ‘ worried in n.j. ‘ i wanted to thank everyone talking about the VITAMIN D dilema. My concern from all that I have learned about MDS is it presents with a few unrelated "nuances" . please don’t mis- understand I am a commonsence person (and not a medical professional). however this MDS seems to be made up of ‘ NON threatening Nuances " until they present themselves holding your body captive. Well i shall close for now . Gods Speed Thankyou to the foundation for a place to speak and feel safe doing so. worry in nj

[james han]

Vitamin D3 Function: vitamin D is important for building and keeping strong bones. Vitamin D3 is used to treat and prevent bone disorders (such as rickets, osteomalacia). Source: Beef liver, cheese, egg yolks and fatty fish.

[lucyls lucyls]

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• This reply was modified 7 years, 10 months ago by lucyls lucyls.

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