I have the jak2 mutation. It’s not clear which MPN I have as a bone marrow biopsy was inconclusive. My platelets reached 541 and the HCT reached 51.6. I recently started taking 500mg of Hydrea daily. My HCT is now 48.7 and my platelets are 319. I just had my vitamin D tested and it was 26.7 which indicates vitamin D insufficiency . I have been taking about 1000 IU of vitamin D a day. I would like to increase this to 1500 IU per day but I am concerned about a study that reported that vitamin D is involved in the progression to myelofibrosis. I welcome any advice.
Vitamin D insufficiency : I have the jak2 mutation... - MPN Voice
Vitamin D insufficiency
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Dan73
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29 Replies
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Dan, the amount of vitamin D your using may be satisfactory however, vitamin D becomes bioactive with magnesium. Boron also activates inactive D, search on "nothing boring about boron" Check with your health care professional before increasing either mineral. Is your doctor a hematologist or an MPN specialist? Suggest getting a second opinion on your inconclusive bmb. This link to the Townsend Letter brings other supplements to discuss with your doctor.
townsendletter.com/Dec2017/...
I saw a hematologist and a MPN specialist. They each ordered a bone marrow biopsy. The first one had an inadequate sample. The second one had an adequate sample but the MPN specialist said I was in a very early stage and that I had mild hypercellularity and a MPN but it was too soon to determine which one.
I am not a physician, but it is interesting to me that they told you they were not sure which MPN you had. I understand that the BMB by itself couldn't differentiate between MPNs, but since you're JAK2+, have elevated HCT, and had a BMB that showed hypercellularity (even mild), it seems to me that you meet all 3 diagnostic criteria for PV.
By coincidence I read the paper , “nothing boring about boron “, yesterday. It is excellent and well worth reading . Highly recommend it.
• in reply toPte82
Very useful Consuming foods with (High Fructose) Corn Syrup will inhibit the vitamin D you get from the sun or in pill form from becoming a form of Vitamin D that the body can use.youtube.com/watch?v=ha2mLz-... and
youtube.com/watch?v=a4zfWkv... at about 14 min on
Technical, but if you want to understand - this is it.
Pte82• in reply to
NZ_Max thanks for sharing about HFCS inhibiting D. That creates a drop in calcium uptake and I'm sure other nutrients are affected too, not in a nice way. Haven't found any information about what D level this link is referring that is excess.
sciencedaily.com/releases/2....
• in reply toPte82
Thanks for the link - but this is really weird. It says about the Vitamin D receptors and Vitamin D being too high, and successful treatment being low vitamin D diet.
But - a lot of us PV people have low vitamin D levels, and (me anyway) bad vitamin D receptors (have done for ages, long before diagnosis) - so how does this tie in??
I was interested in the statement at the end " Professor Katayama comments: "The only permanent cure for this disease is hematopoietic stem cell transplant".
When one fasts on about day 3/4 new stem cells are generated. I know that when I fast my numbers go pretty well back to normal (I need to fast longer really but my PTSD kicks in before I can). Stem cells may be the common denominator here - and I would love to know more about this!
• in reply to
Another thought re Vitamin D. Do we have oversupply of Vitamin D, get PV, then our bodies shut out Vitamin D in order to try and recover?? very crude, but ... who knows?
Pte82• in reply to
It's a kenundrum:
pubmed.ncbi.nlm.nih.gov/159...
You have a lot on your plate already and PTSD too!. Thiamine may offer relief. The forms of B1 called Sulbutiamine and TTFD pass through the blood/brain barrier more efficiently than others. Research the pros and cons of each and consult with your health care professional before using any supplement.
frontiersin.org/articles/10...
• in reply toPte82
Thanks so much Pte82,
I will have a look at the article you have linked to - but you know what?
Since I have recently found fermented drinks and veges (which have great amounts of all sorts of bioavailable B vitamins et al in them) I have become a different person. As I was explaining to someone else - I have energy, I can think, I can breath better (did not know I was not!) I am happier, I have a better grip on life and am reclaiming my life. Who is it know if this will last - but I am taking it with both hands while I can!
• in reply to
and - I am not talking about overloading with the ferments. Started gradually and still only having moderate regular amounts.
Pte82• in reply to
NZ_Max since your doing so well with B vitamins, these links will be of interest to you. Magnesium is an important for the activation of thiamine and I would think magnesium I-theonate would be good to include with other forms as magnesium has a hard time passing through the blood/brain barrier.
eonutrition.co.uk/post/when...
eonutrition.co.uk/post/thia....
• in reply toPte82
Oooh - magnesium.Thanks for the links - I will certainly spend some time looking at them.
I know I am (or at least have been) short of magnesium and that there are different forms of it, so me - being me - has a bit of everything. In food (fermented ups that) as a spray, in baths.... I will look so see more about the l-theonate one. (My memory forgets what I have found out already
Thiamine - pumpkin seeds is a good one for that (activated, of course). But I will look more in that area as well. I cannot remember going down that track. But I tell you what - I am still feeling great today!
Thanks again so much!
Pte82• in reply to
NZ_Max, check out "nothing boring about boron" Boron increases magnesium absorption.
Hi Dan73. curious if they test your EPO, what about your hgb ? my MPN specialist mentioned that PV is the only MPN that can be diagnosed with only blood test
Before hydroxy hgb was 17.1. EPO in November was 5. Normal range (4-17)In Dec when I had the bone marrow biopsy at Weil Cornell, hgb was16.2, hct was49.7 and platelets were 458. My numbers have varied from borderline to mildly elevated over the past several months. Also different labs have done the testing. Most recent hgb was 16.7
• in reply toDan73
Talk about different labs doing the testing - how about the same lab testing for the same thing at the same time with blood drawn off at the same time. One lot of tests was for the specialist, the other for the doctor (double up unknown by them).
Creatinine: 88 (norm) eGFR:60 (low)
Creatinine:102 (high) eGFR:50 (low)less than a month before and again less than a month later everything normal.
So - just how reliable are blood tests?? make one wonder.
You need to get out in the sunshine! But wear a brimmed hat or baseball cap !
I would speak to your dr first. I have read that vit d is linked to bone marrow cancer.
mpnresearchfoundation.org/V...
In the past both the hematologist and the MPN a specialist said it was ok to take vitamin D supplements. I haven’t shown them the results of the vitamin d blood test yet. I had it done 3 days ago. After reading the studies my uneducated guess is that I should get my levels up to the low end of the normal range which would be an increase from 26.7 to 30.
• in reply toDan73
I too was very deficient in vit d. Got it up to the low end of normal range but I’m going for the optimal range.
• in reply to
do look at the above videos. very interesting
• in reply to
So confusing to me. Putting it in layman terms would give me better understanding. This I do know, because I was born with rickets, vitamin d deficiency leads to many health problems. My hope is that Drs will begin to look more into that instead of just saying “ We don’t know what causes it so all we can do is prescribe medicine.& there is no cure” I am a firm believer that we need to get to the root of the problem. That is always my first defense. Check vitamin & minerals for deficiencies & if there’s a range it should be in, why not go for the higher end? .Just my humble opinion 😊
• in reply to
Vitamin D from sunlight and supplements is not available to the body straight off - it has to go through the liver and kidneys and changed to a different form of Vitamin D to become bioavailable (who knew??). However, fructose - especially corn syrup or high fructose corn syrup stops dead that process from happening. So no matter how much sunlight or supplements - you may not be actually getting vitamin D which is available to you.
Look at the ingredients list, I think it is just about everywhere, including tomato ketchup!
Sad - but jut another thing we need to be aware of. Hope this helps.
I am on a prescribed amount of vit D, afterthe haemotoloist identified I had very low levels, to be retested soon to check its gone up. I had been taking vit D supplements. Will read the boron article when not so fogbrained....My confusion is about getting it naturally now I'm on hydroxy, as covering up and factor 50 etc, I really won't be able to get much that way. So think I'll keep on with supplements after my prescription ends.
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