What is known about vitamin D and MPN?
I am A soon to be 70 year old woman with ET, JAK 2. Since I am on HU (500 mg/day), sensitive to sun and chemical sun screens as well, my dr checked my vitamin D levels, which, sure enough, were low. But is it because I avoid the sun? Or is it Linked to my ET? Trying to find an answer I came upon A small study https://pmc.ncbi.nlm.nih.gov/articles/PMC7053540/ What does science have to say?
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Thanks for the link to this interesting study, pegrid.
It found that while Vitamin D deficiency is common worldwide, those with JAK-driven ET or PV are two times more likely to have this deficiency.
The authors also point out that a Vitamin D deficiency is more harmful when ET or PV are present, because Vitamin D does two really important things for us.
It reduces inflammation, and (along with calcium) it helps our bones stay strong. Both benefits contribute to longer life for those with MPNs.
I've been lucky, in that a test for my Vitamin D level has long been part of my routine bloodwork. I have taken Vitamin D supplements for almost a decade now.
If you don't know your level of Vitamin D -- please consider discussing this with your PCP.
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8 ReactionsI live in Michigan where everybody is sun-deprived and has Vit D. And if you take HU, you have to stay out if the sun, anyway.
I'm 71, so I take a daily multivit for old ladies with some Vit D and calcium. In the only good medical news I've had in the last 10 years, my tests for Vit D are fine, and my bone density is better than expected for my age cohort.
I am CALR+, and I don't know if that makes a diff.
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7 Reactions@pegrid, I hope you saw the helpful replies from @nohrt4me and @janemc. Living in a northern altitude like Sweden, it is hard to get enough vitamin D.
Did your doctor suggest taking a daily supplement of vitamin D?
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3 ReactionsI recently questioned this myself… for reference: I live in Florida where there is no shortage of sunlight whatsoever, yet recently had my Vitamin D tested as an additional test to a thyroid function panel and I was extremely deficient. I do believe there’s a reason for this that lies within the MPN’s
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2 Reactions@colleenyoung Yes, I was prescribed 20 micrograms vitamin D per day, double the recommended dose for every adult during the dark winter months here in Sweden. I will do a follow up test in six months to check for any changes. However since then I found out that not only MPN but also HU affects the bodys ability to absorb vitamins such as vitamin D. If so, low levels of vitamin D ought to be a common problem among those of us with ET and on HU?
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3 Reactions@pegrid, good question. Have you asked your doctor or pharmacist? I'd like to know the answer.
No, not yet. I thought I'd save it untill I have my yearly check up with my hematologist this fall. Then I'll have the new labresults for my Vit D levels as well. I'll get back to you when I have an answer. Unless someone else here knows?
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2 ReactionsI'll add this to the Vit.D coversation. Once about when I was 10 or so, I read about race horses that were bathed daily had low levels of Vit. D. (They tested the run-off water.)So I would ask the question: Do you bathe every day? And do you have dry skin? Have yourself tested and do your calibration. It's really important.
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1 Reaction@suetex
Fascinating! Thanks for sharing this!
@pegrid I did not know HU affects vitamin absorbtion. Another concerning reason for me of having to take it as I am a bariatric patient who already struggles with absorption to the point I take IV vitamin infusions monthly. My numbers are still low enough I am not on it…praying they stay that way!
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