As the sun is now waining and my Neutrophils are still being suppressed by Peggy if thought of Vit D3 supplements. There is a lot of evidence vit D3 helps the immune system and there is also evidence MPN sufferers often have a shortage.
Any thoughts in if it's worth while taking a supplement in the darker days
Hi DougyW. I don't know of the relevance to MPNs (if any) - others may know more.
I have , however, supplemented Vit D over the winter for years though, following advice from Dermatology to do so from Sep. to April. I have relevant skin history which means I limit sun exposure.
Neurology was later trying to work out why I was having frequent mild dizziness and an increase in migraine aura - both probably actually linked to the MPN that I now know I have, but that wasn't uncovered for a few more years. The Neurology Consultant told me that Vit D is important for brain function and lots of people in the UK have too little of it, particularly over the winter, so for me it just reinforced the idea that it was a good idea to supplement over the darker months.
I'm usually wary of adding tablet supplements as I know some can knock other vitamins and minerals out of synch, but I'm not aware of any downside of Vit D supplementation as long as not extreme.
I take vit D all year round for the last 3 years
I had a blood test in May just as the summer was starting and it showed low vitamin d so haematologist told me to take vitamin d supps and informed my Gp. Figures were back in normal range in August blood test and as sun was out I stopped taking them. Will probably take again towards end of winter. Your haematologist can include a test in your next blood test if you ask them.
I take a Vit D supplement but it has nothing to do with the MPN. I have a measured Vit D deficiency that is likely related to another condition, Neurofibromatosis Type 1. My Vit D supplement dose is titrated to the appropriate amount based on follow up testing.
Nutritional deficiencies can have significant impact on us. They can occur for a number of reasons (e.g., long-term use of PPIs). It is prudent to base the decision to take supplements based on assessed need. I did a comprehensive nutritional assessment and also found Vit B/folate and magnesium deficiencies. I now take supplements for those deficiencies too.
Wishing you all the best.
Hello, I think it is a good thing to ask the doctor first (as always). I did and I was told to go ahead and take D vitamin between October and March. It is appearently not needed for the rest of the year, a waste of money...Well, that is for me so check and then you know!☺️
I take Vit D all year round. I don't know of the relevance to MPNs, but I take Hydroxycarbamide and have been advised to protect my skin from the sun - So I wear factor 50 sunscreen. I supplement because I'm not getting any Vit D naturally from the sun.
from my investigation into vit D, it has come to light that pretty much all cells in the body have a vit D receptor. The body would not have evolved in this way if vit d was not important to your whole body, every single cell. It would not waste precious resources on a system that was not needed.
So a good starting point would be a blood test to check your levels, as if you already have a good amount, see :vitamindsociety.org/, then you may not need to take any.
Seriously, there is no point asking your GP, your haematologist. They are typically clueless about vitamins and minerals as they are not taught this in med school. If they are lucky they will spend ½ day on this topic in their entire training. Well you can ask them, check what they say, then you’ll know for your self how limited their knowledge is.
So best thing- book your self in for a Vit D test. Whilst you’re at it also ask for Folate, vitamin B12 and ferritin. Always good to know what these are, as deficiencies in these can give you unpleasant symptoms. Could also check thyroid levels too.
Always get a copy of your blood test results with reference ranges so you can see where you are in the range. There is a tendency for Drs to say your fine even if your just 1 point away from being deficient, which clearly is not helpful or healthy. If previous tests on vits have been done, get copies so you can see if they are going up, going down …
Review your diet as maybe some tweaks could be made to make it richer in vit d. Vit D is fat soluble, so bear that in mind if getting supplements. Not all vit d supplements are the same quality.
Don’t be afraid of higher doses if you have low levels . Typically if you sit in the midday summer sun for half an hour without sun cream, your skin would make 20,000 iu. The body has an incredible self regulating system .
Even the NHS say “You cannot overdose on vitamin D through exposure to sunlight.”
Obviously you need a reputable supplement manufacturer if that’s what you need/want to take.
Really suggest you read up on this topic. Absolutely fascinating.
best wishes
hello DougW, I have PMF, I take Liposomal VitD3 with K2 every day as per lots of research , in liquid form. There are a few studies which show taking 2000mg has many benefits, check it out, I buy mine from Amazon it’s around £10 per bottle I find it really benefits me, as others have said your haematologist won’t really know they normally just check with the pharmacist that’s it’s ok👍🏻
I’ve been supplementing vitamin D for several years on medical advice, following a low reading and as lack of sunlight in the UK, especially in winter, hampers natural production.
It’s a cheap supplement and I’m not aware of any contraindications but as always it’s good to check with your doctor first, as we’re all different.
I have been on vit D for 2 years. Neurologist recommended it. He also told me it makes interferon work better. I haven’t really researched that, but I also have MS and I have seen articles that recommend vit D.
Vitamin D is a good supplement and taken judiciously can only help you. Have you ever had your Vitamin D level tested? My MPN specialist strongly suggested it for me. Best to always ask your medical professional before starting any supplemental. Good luck!
Turmeric
Vitamin pills
Winter blues
