Hi
@Mary
Sorry about your endo experience. It is extremely hard to find a good one who is up to date and looks at things comprehensively. The first doc I went to when my health started to decline was also an endo, who completely misdiagnosed me and cost me many more years of decline. I truly hope this next one will be better for you.
But, I find that docs generally are more helpful when you come with a printed list of symptoms, a timeline or progression of symptoms, and recent test results, and do not mention ME/CFS or what you think it is at all. Presenting the symptoms and let them do the doctoring seems to work better for their ego. It is a no-win situation by starting with ME/CFS, as their training and medical board does not consider it treatable, if it even acknowledges it. The printing of bullet point lists also helped me remember everything I needed to come across without having to stress that I would forget a salient point during the appointment.
Vitamin D, K, Phosphorus and Calcium
The parathyroid tests are very standard, and every primary care physician or family doctor should be able to order them for you, under insurance coverage. Your parathyroid tries really hard to balance the calcium and phosphorus levels in the body, and vitamin D has an impact on the process.
Too much vitamin D supplementation (i.e. >400IU from pills for extended periods) when you are not deficient can have a negative impact on your body, including higher blood calcium levels, achiness, pains and even cancer. There was a large scale study done recently. Do you also take calcium supplements, as that was recently in a study as causing harm as well? Calcium through food was found to be great, but supplementation had adverse effects. Likely due to all the cofactors needed. Similar story with vitamin D. Since you are not deficient, are you still taking D?
I used to take 5000IU daily when deficient, but continued way too long, and it backfired. Now I instead go outside for a walk to have UV light and my cholesterol (7-dehydrocholesterol) be used to manufacture some endogenously, or I will have some cod liver oil or fish. No more pain from vitamin D supplements and better absorption that way.
Even small increases in calcium in the blood can cause issues. High calcium in the blood can cause issues like high blood pressure, bone loss, and kidney damage.
Also fortified processed foods often contain synthetic vitamin D and calcium like certain cereals, juices and non/low fat milk, which can add another dose.
Vitamin K is also important in utilizing calcium for bone strengthening. So if you are deficient in K, it will play a part in this cycle, hence the osteocalcin test. A plain vitamin K test might also be worthwhile.
A more technical read on the parathyroid:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2486454/