This is also one of those issues that ALL countries could take greater note of as every time my Vit' D is measured, I am deficient, and the problem is easily corrected via a supplement...
Hence, perhaps everyone 60+ Vit' D should be a mandatory inclusion to promote better bone health...
Good article. I must say my muscle weakness started in my mid 40s. Not just over 60. Furthermore, My D deficiency was one of the reasons I had Hashimoto since my 20s! I was always given a D daily dosage of 1,200 IUs, which over the years of these “baby” drops did NOTHING as with most adults.
Although I’m greek and spend my summers in the sun, I was deficient due to sunscreen, which I have now banned from my life, unless I have to go into the sind for a long time and I’m still white from the winter. Otherwise, I try to build up my natural solar resistance slowly.
Since 2 years, I take 40000-45000 IUs of Vit. D weekly to stay in the 60-70 range. All counts under that are deficient. Ranges on Blood tests are adjusted according to the population, which includes those deficient!
Yes. Our skin is definitely more susceptible to the sun if we’re toxic. I’ve been detoxing for 2 years now. The difference in my health is incredible, but my Anagrelid is keeping me on the battlefield. I do lots to counteract the side effects. I do hope you get your skin checked. Australia’s sun is often dangerous and you’re always biking. Are you on HU?
Keep a tab on the Vit D. My hematologist checks it and my thyroid every 3 months.
No. I was on HU very early on, and it was I believe responsible for my mouth ulcers and a few other skin blemishes...
I have been on Ruxolitinib (Jakafi) for three (3) years come December. Now, I am also taking weekly low-dose Methotrexate (MTX) because it is having some success at keeping my platelets below the 900s-1M mark...
I am also taking Folic Acid 6 days a week, which might be helping my anaemia by helping to promote Red Blood cell stimulation (?)
In any event, most of these drugs are anti-Steve's ecosystem... Hence, we must be ever vigilant to try to assist our bodies, while still helping to manage our various MPNs the best way possible, in my view...
I am also Vit D deficient. In my case it is due to cooccurring Neurofibromatosis Type 1. Oddly, I was recently diagnosed with s severe Vit B/Folate deficiency as well as a moderate Magnesium deficiency. Multiple supplements are now a part of my daily regimen.
The possibility that it might be related to my recent use of hydroxyurea was raised by my PCP. We know the HU compromised my intestinal endothelium, causing constipation that lasted past discontinuing the med. My PCP wonders whether the HU effect on the intestine also interferes with absorption of nutrients. My GI doc said the effect is microcellular so there is no way to really tell what is going on if anything is.
Too bad whatever is going on does not seem to involve absorbing calories! At least that would help keep the weight off. Oh well - just have to watch the intake and exercise more.
Hi Steve your right again , my Vit D was in the 30’s which supposedly was adequate. A friend who works and orders all the products in a Health Food store for over 20 years and is very knowledgeable with supplement dosage said you should try to be in the 60’s. I’ve in the last several months been taking 2000 IU’s a day and she recommended I take 3000 IU’s a day. I believe it really boosts mood. I take Omega 3 Fish Oil, Tumeric and Vitamin D3, baby aspirin and a glass of red wine along with 45 minutes of vigorous swimming daily and it seems to be very beneficial to helping manage my ET.
I recently was at a day long Auto Immune ( and our illness is auto immune related )workshop that detailed inflammation as a major cause of disease. Whatever we can do to minimize inflammation in our body can really modify symptom burden.
Thanks for keeping the news flowing regarding outside the box perspective in managing MPN’s.
I would like to know more about ' Auto Immune ( and our illness is auto immne...'. Very interested because, in my opinion, it can be the root cause for all of the PV patients.
Hello good to see you studying. Auto Immune issues from what I’ve read do impact disease. I’ve been on 551 Mg of Tumeric with black pepper for absorption twice a day for almost two years and it has been a blessing to my health.
I am on an autoimmune diet. It is also an antiinflamatory one and then to PV.
Curcuma is good for me too and ginger every day. The more important is that the immune system works in its pace.
There are some genes related to these diseases. I think in too much patients it could be the root cause. Microbiote is altered in people with autoinmune diseases too.
Oxidative stress too.
I checked the microbiote and it become true. Taking care of the microbiote is the point, in my case.
I dont understand why the worlwide hematologists dont work with this point. Too much things in MPN patients that I dont understand.
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