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High Dose Vitamin D: Is it safe?
Pancreatic Cancer | Last Active: Jul 8, 2023 | Replies (18)Comment receiving replies
Apologies for yet another question about vitamin D.
Personal background: retired physician, recently diagnosed at age 73 with "inoperable" adenocarcinoma of the pancreas. Not satisfied so far with the lack of integrative care I've received from my current (university) hospital care system.
Again, I'm not sure of the propriety of just posting links here, so will leave that to the page administrator to say yay or remove offending link. This is also the first time I have attempted to convert one of those lines-long URLs to something more manageable
https://tinyurl.com/4dtjrpjb
I have regarded this man as something of a snake oil salesman, and don't remember how I got on his mailing list. In this column, however, he discusses muscle weakness (which he says is now being called dynapenia) and says it is treatable with the correct combination of vitamins D3 and K2.
I'm hoping that some participants in this group will have relevant information either from personal experience, or from greater knowledge on the subject of vitamin D metabolism and its usefulness for the muscle weakness and wasting that I'm experiencing...
Replies to "Apologies for yet another question about vitamin D. Personal background: retired physician, recently diagnosed at age..."
I've had my vitamin D level checked twice in the last year.
Mid September 2022 vitamin D (1, 25-Dihydroxy) test was barely above the lower level of normal; as was my calcium.
2 days ago, my vitamin D, 25-Hydroxy test was also barely above the lower level of normal, as was my calcium again.
No parathyroid testing has been done.
I have also dealt with a lack of interest from my oncologist.I have had to fight for Gene testing and looking for clinical trials,she has been no help at all.I am in my 9th month of fighting.Doing ok so far.Through the gene testing I found out that I have a ATM gene mutation.Sloan kettering is doing a clinical trial for that mutation.I have been trying to get in touch with them,its not easy.We have to be our own advocates in this fight.I will continue to fight as long as possible.I was a 70 year young active female.Presently on the flurocil regime.2 day pump every other week,UGH but doing ok.
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Suggest check a level. If you adjust the vitamin D to a good level such as 50 or 60 and your symptoms are better, it seems you had success. Muscle weakness more common with very low levels. Check the parathyroid level along with the vitamin D. Your primary care provider will likely order if the oncologist doesn't typically do a level. Keep in mind that vitamin D toxicity with high calcium in the blood can be seen, so good to check the calcium and parathyroid levels with the vitamin D. If the parathyroid level is elevated and the calcium is normal the vitamin D level may need to be higher. Also reasonable to check bone density, can be low with vitamin D deficiency. The vitamin D level is covered by Medicare only if the correct diagnostic code is given, most common reason to order is vitamin D deficiency.