VitD and MPN

[Camelian]

Off topic just wondering if anyone has been told they shouldn't take VitD? Ive been taking it for a couple of years since my GP told me I'm deficient but I read a post which said it could be linked to progression in our condition😱 ????

Just wondering if I need to stop taking it???

[Kdavie12]

Hello Camelian,

I recently had a test and found out that I too am deficient in vitamin D. I take 1000iu vegan vitamin D a day. I think we can still have vitamin D, specially if we are deficient but not sure for the right dosage for our condition. As we are not doctors, I would ask your specialist. Please let us know what he advises. Thank you

[Mazcd Partner MPNVoice]

Hi Camelian, mention it to your consultant at your next appointment, she/he will advise you. Best wishes, Maz

[Stevesmum42 in reply to Mazcd]

Hi Maz. Hope all is well in north Devon. Just to say loving the hair👍🏻

Sandy x

[Mazcd Partner MPNVoice in reply to Stevesmum42]

Hi Sandy, yes thank you all good here, hope all ok with you, Maz x

[hunter5582]

I expect like many things it is all about finding the right balance for your body. The way each of our MPNs present varies and we also have other conditions that impact out ability to metabolize various vitamins. I have Neurofibromatosis type 1 which it turns out interferes with my ability to metabolize Vit D, I need to take 3000iu/day to reach an adequate level of Vit D. Also turned out to be seriously Vit B/Folate deficient. Take a supplement for that too even though it promotes hematopoiesis. The risks of Vit B/Folate deficiency are too serious to do otherwise.

Maz is right about talking to your doc about this. It is all about finding the right balance for you. I consult with an Integrative Medicine doc who is much more tuned into these types of issues than most docs.

All the best.

[JaK2ET]

Back in late 2018 the blood tests which set me on the road to my MPN diagnosis also showed that I had insufficient Vitamin D: 28 on a scale where the level should be at least 50 to 70 apparently. No Vit D was prescribed but I was told by the GP to buy some from the chemist. I take 25 micrograms daily, the smallest dose per tablet available from the chemist I usually visit.

Rather to my surprise, the regular blood tests I have do not seem to include analysis of the Vit D level. I assume that I should carry on taking the supplement, especially as my skin does not tend to see much of the sun ...