Post by MPN-MATE Admin » Tue Nov 24, 2020 11:57 am
Morning everyone,
As many of you will have already discovered, (as have I), that many of us suffer from a Vit. 'D' deficiency w/ our MPNs.
Since, I researched I found that there was plenty of evidence out there to suggest that there is a need to take a supplement for bone strength and to avoid other possible 'D' deficiency problems.
This artilce / report below, is based on the findings of a larger cohort study over a period of Five (5) years. Hence I though it a worthy piece of information for us all to scan through at our leisure etc...
Thank you for posting. Very informative indeed about Vitamin D. I am currently taking part in the Mosaicc Study which is looking at Vitamin D also. I am also reading Cancer Code at the mo X
Thanks so much Steve, I started taking Vt D after a previous post about this, possibly also from you? Thanks for helping us all make informed choices and keep as safe as we can,
I think it's important to discuss taking supplements with your MPN specialist, especially where vitamin D is concerned. MPN specific research into the topic is complicated.
« The team was able to largely prevent the onset of myelofibrosis by giving the mice a low vitamin D diet »
« Too much vitamin D and excessive macrophages stimulate the development of myelofibrosis ».
Vitamin supplements can indeed increase the risk of cancer and negatively affect the progression of MPNs. I agree with my haem who recommend an healthy diet and no vit. supplement.
It's a hard one isn't it? It's easy to become deficient in winter. And when I read about the Japanese study, it seemed to suggest that too much Vitamin D was an issue, but I wonder if that is relevant to us if we take a minimal amount during winter. Unfortunately I don't think doctors are necessarily well informed about this. Has there been any guidance from Prof Harrison and colleagues I wonder.?
Very interesting. It supports the notion that we should all be checking on our nutritional status as it is a critical element of overall health. I am Vit D deficient, which is also related to NF1. Also Vit B/Folate and Magnesium deficient. Now taking supplements for all of the above.
Very good article, thanks for that. I take a vitamin D spray daily, it’s easier to remember just one spray into the mouth after cleaning teeth.Feel it’s a must through the winter months,
Thanks steve. Yes, I have been taking Vit D, but keep wondering if I really need it as I'm outside at least for a few hours every day. Interesting that with all your sunshine and your outdoor activity that you still get a benefit.
Yes, but that is precisely what does make it all such a curiosity...
Being outside so much, should mean that I am getting enough exposure to the sun, and therefore absorbing plenty of Vitamin D...
...However, all my D tests revealed that I was still deficient... and that's why I am taking the supplement these days.
My thoughts are that the toxicity of the drugs that I am taking are depleting my natural reserves, and according to the article I referenced earlier. Being deficient in Vit. D is commonplace happening for quite a variety of cancer sufferers...
Cancer patients‘ bodies and those with any other immune problems need much more Vit D than was given in the study, 2000 IUs, which is considered high Dosis. My daughter (16) and I take 10,000 daily, which has gotten us up to a blood level of 60. ideal is between 60 and 80 for normal people. My husband, who has psoriasis takes 20,000 IUs almost daily. That, together with the AIP diet, got rid of more than 50% of his psoriasis and her dermatitis in just 1.5 Years!!
My Hashimoto has been reduced by 75% in 2 years. Really great news! We take D tablets.
By the way, my ET has stopped getting worse. But! We are chemical free at home and we have an immaculate diet and practice stress reduction and prayer. All these play a role.
All people with autoimmune illnesses are deficient. Also, the fact that everyone i using sunscreen is a vit D block as well! i never used sunscreen, but used to start going out in the sun for 15 min then 20, 30, 40 60mins etc until I was gypsy brown every single year. then I met my husband at 36 and he convinced me to use it. big mistake. the stuff is also super poisonous. now Ive found that olive oil has a 20 factor and coconut oil 25! haha!
we live in Austria, on the average, a cloudy country. so, we are all deficient. on top of that, the people today are stuck indoors with their tvs and computers. the doctors never give enough supplement to combat that. Cheers
Hi Steve my hematologist checked my Vit D and to my surprise my levels were normal. I was concerned as my heritage is mediterranean and l live in North Germany The Haematologist recommended that l take D over the winter months. I have also read that too much Vit D can be harmful but at high levels
Always best to be guided by some form of expertise... However, bloods don't lie... I am taking 1,000IU daily, and that seems enough in my case to right my D deficiency...
The “normal range” is based on the average of the area where one lives. In Austria (where I live) the norm (20-100) is already including the deficit, which is anything under 50. Patients with autoimmune issues need much more. My husband (psoriasis) (Austria) should have a level about 100-140 as his alternative doctors suggested. He’s so much healthier now. He’s taking 20,000 IUs daily and I’m taking 60-70,000 weekly. My levels are balanced at 70. When I take 1000IUs a day, I’m at 25 (a terrible deficite), when I take 4000, my level is at 35 (also a deficite).
I am Greek. This also plays an important role! I need more sun. My Red haired Irish friend doesn’t even need 1/3 of what I take. Africans who have dark skin have a terrible deficit in northern countries! They are given the usual “Austrian” dosage and are always sick.
The only way to really know is to test the D level, start supplementation, check a month later and adjust. This is what I do and it’s the only sure fire way to correct intake. “Optimal” D levels are 60-80. 🙂
That’s useful to know. My understanding from what l have read is the pigment melanin, which is more prevalent in people with darker skin, reduces the body’s ability to make vitamin D in response to sunlight exposure. People who have pale skin therefore produce vitamin D more quickly than people with darker skin. A dark-skinned person might need up to 10 times more sun exposure than a lighter-skinned person to produce the 'same' amount of vitamin D.
I assumed if you take Vit D orally you absorb the same amount regardless as it’s not sunlight exposure. Interesting to learn that some people require such large amounts of pills to reach the normal range.
I was surprised my levels were in normal range. Especially with lockdown and no long holidays in the sun. Perhaps my diet helps. I will raise this again with my hematologist. Thanks for the information especially in these Covid times
You’re right about the skin color and absorption. Also, bit D from the sun is better absorbed and used. D from pills are not as effective. That’s why we need more. If we eat organic produce that’s been grown on open fields, they contain Vit D. Those in green houses, hardly. Pasture raised, organic beef, mutton, etc. also contain good amounts of Vit D. 😁I’ve had several haematologists. Not one (nor other conventional drs. have a deeper understanding of Vit D. I’ve learned this through reading, specialists and highly trained dieticians.
Hi, Steve,Interesting that you brought up this topic now. I was listening to a podcast last night where a doctor was being interviewed about the effects of Vitamin D. She has done several studies on it and has written a couple of medical articles. She highly recommends taking it every day. My partner just ordered some and we both started taking it yesterday. I have not been tested for several years, but last time I was, I was deficient. I think I’m going to ask my doctor next visit to test me for it.
That’s interesting but what do you make of this ?: « The team was able to largely prevent the onset of myelofibrosis by giving the mice a low vitamin D diet or by removing macrophages from the bone marrow. »
No problem, purely coincidental I can assure you...
It's all about 'bone' health is it not, and especially so w/ MF
Diet, and exercise, along w/ sleep & rest are really important to me...
And if 'D' supplements help me maintain my longevity, then I am all for it...
I do know that all my tests prior to starting supplements, where showing a large deficiency, and that subsequent testing since are showing a return to normal levels...
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