Re: Parathyroid disease with normal calcium levels
I am still on here. :)
Because you have adrenal problems, high PTH, and "normal" calcium levels, you are in that hard to diagnose range, like I was. I had what appeared to be a tumor show on my sestimibi scan.
I did want to go see Dr. Norman in Florida, and he agreed to do my surgery, but it would have cost over 10,000. cash, as insurance wouldn't cover it and I now do not have insurance.
Why didn't I agree to let Dr. Norman go ahead? I felt like maybe my adrenal fatigue issues were causing the high PTH numbers, because one of Dr. Norman's pages expalains that PEOPLE WITH MALABSORPTION, FROM CELIAC DISEASE, GASTRIC BYPASS, or any other condition that creates malabsortion issues... will have a high PTH because calcium is not absorbed properly.
Although I don't have celiac, I am gluten intolerant. Because of my adrenal issues, I also have malnourishment, fat malabsorption, leaky gut, etc. I have a hard time absorbing nutrients from food. My digestion because of AF is completely screwed up. So that puts me in the category of people who have malabsorption, just like people with Celiac or who have had gastric bypass.
A half year or so after Dr. Norman offered to do the surgery and I said no, I did another PTH test, and my PTH went back to normal. Several months after that, I retested and it was normal again. Perhaps because I was trying to strengthen my adrenals, and that improved malabsorption.
I also was chronically low in vitamin D before getting AF and while I had a sky high PTH reading. I went on mega doses of vitamin D, because docs thought raising my vitamin D level would bring down the PTH. It didn't. BUT. I REALIZED THAT MY DOC DIDN'T SUPPLEMENT ME WITH ENOUGH VITAMIN D. (I'm trying not to shout... i only want to add empahsis and can't find the bold or highlite button :) WHEN YOU HAVE ADRENAL FATIGUE, IT'S DIFFICULT TO ABSORB/MAINTAIN enough vitamin D in your sytem. So my doc had me on 50,000 iu of D 2x a week for a month, and it raised my D levels, but only temporarily. They fell back down in a few months when I was on a maintanence of 1,000 iu a day. Too paltry an amount. My PTH remained high. I started taking 11,000. iu of vitamin D a day, and my bone pain went away and finally my PTH went back to normal.
I too have had every symptom they say people with adenomas on their parathryroid will have. However, these symptoms overlap heavily with AF symptoms. I knew AF was causing my symptoms far more than a supposed adenoma was.
So. Two reasons I believe you could still have a high PTH reading and normal calcium.
1. Because you have AF, you have malabsorption, which doesn't allow you to absorb calcium (or anything else) which drives your PTH up.
2. Because you have AF, you can't maintain your vitamin D levels high enough even when you're given megadoses of D. (even 50,000 2x a week for a month) You have to keep up a high level of D per day over extended time, even after the megadosing. I've been at 11,000 iu per day for a year or so. When I slack off, I get achey bones.
In my opinion, my PTH issues are a direct result of my adrenal fatigue. Like I said, I had repeated high PTH levels for a year. I was so worried because of it. Then I get them checked a year ago, and they were normal. I do a follow up test, again they are normal. The only thing I "did" that I can attribute this to is the vitamin D. Check the adrenal fatigue formum... people are always complaining that they have a hard time keeping their vitmain D levels up, even with supplementation. But a regular doctor doesn't know that about a person with AF.
If interested, I can search for and include Dr. Norman's link that explains this more.