Hyperparathyroidism Support Group
Hyperparathyroidism is overactivity of the parathyroid glands resulting in excess production of parathyroid hormone (PTH). Increased PTH consequently leads to increased serum calcium (hypercalcemia) due to 1) increased bone resorption, allowing flow of calcium from bone to blood, 2) reduces renal clearance of calcium, and 3) increases intestinal calcium absorption.
Hello. I know many have spoken of frustrations having a hyperparathyroid problem properly addressed. I must weigh in on the other end of the spectrum.
After getting the blood workup results that pointed to hypercalcemia, I first correllated my sypmtoms to those of hypercalcemia and found many commonalities. I put these in a set of notes to help whomever I needed to get help from. Since the bloodwork positively ID'd the hypercalcemia, the next step was finding the cause. Given the odds of the hyperparathyroidism, I was guided to an endocrinologist.
This might be where many need to put the most attention. I researched for those specialists nearby who had experience with hyperparathyroidism. It seemed most dealt more with more common problems like diabetes & the like. So I looked for years of experience and attention to the parathyroid.
I had my consultation this morning (8/13/10) and having prepared well in advance, my endocrinologist readily suspected the parathyroid. I'll do a 24-hour urinalysis to rule out familial hpercalcemia, and he's already ordered pre-op bloodwork, given the odds of the obvious.
Main point: research and correllate as well as you can. Good info up front seems to help the rest of the process go smoothly.
Best wishes to all.
After getting the blood workup results that pointed to hypercalcemia, I first correllated my sypmtoms to those of hypercalcemia and found many commonalities. I put these in a set of notes to help whomever I needed to get help from. Since the bloodwork positively ID'd the hypercalcemia, the next step was finding the cause. Given the odds of the hyperparathyroidism, I was guided to an endocrinologist.
This might be where many need to put the most attention. I researched for those specialists nearby who had experience with hyperparathyroidism. It seemed most dealt more with more common problems like diabetes & the like. So I looked for years of experience and attention to the parathyroid.
I had my consultation this morning (8/13/10) and having prepared well in advance, my endocrinologist readily suspected the parathyroid. I'll do a 24-hour urinalysis to rule out familial hpercalcemia, and he's already ordered pre-op bloodwork, given the odds of the obvious.
Main point: research and correllate as well as you can. Good info up front seems to help the rest of the process go smoothly.
Best wishes to all.
However, all the research in the world may not help sometimes. I went to at least 3 doctors where I presented a stack of research and nearly begged them to diagnose me, but since I'm only 22-23 years old, (it took me nearly a year from discovery of hypercalcemia until diagnosis,) and my PTH is normal, I can't possibly have hyperparathyroidism.
Just playing Devil's Advocate here.
Also, is your PTH high?
I know by following these posts that you've had more than enough frustration with your endo's et al...it shouldn't be that way. I wish there were a good explanation.
My PTH was a nice, midline 42...however that was in the presence of a 2-year history of calcium readings no lower than 10.3 with a high around 11.6. Having sent my records for the last few years to the endo I chose was very helpful. I'd also read up on the several cases I found where the suspicion of primary hyperparathyroidism would not "raise a flag" with my family physician. He'd simply advised to "not take any calcium supplements". To his credit, he did order the PTH test after my 11.7 calcium reading, but like so many non-specialists, the "normal" PTH "lowered the flags" and I found the need to get an endo "on board".
To find the right one, I did a web search specific for the terms ENDOCRINOLOGIST and HYPERPARATHYROIDISM and then selected those who practice in major hospitals in my area. That the institution I chose is also a teaching hospital was, I feel, an advantage, as such "bread & butter" issues as diabetes seem to dominate the "commercial" references, but a teaching hospital is training in non-specialized endocrinology. I was able to compare experience and emphases, and landed a "bullseye".
It may be helpful to enter a search as follows:
endocrinology site:*.edu
This (in Google, at least) will return only educational institutions, and bypass the morass of commercial entries. by adding your state either before or after the specialty, you can further filter unwanted results.
Hopefully this will help others.
All the best.
I guess maybe I'm just too complicated for my own good, but you would think an "expert" as he is referred to would be able to figure out what's going on. I read Missy's post about a 4D CT scan or something like that. My endo made no mention of this and I am now wondering if I should be looking for a new endo, yet again.
May I ask where you live? I would be more than willing to travel within reason to a knowledgeable endo.
Thanks
Ashley
5 glands?! SOMEBODY
5 glands?! SOMEBODY has to set the standard, eh? Lucky you!Here's a good example why you can't diagnose one person based upon another.
I'm in Wisconsin and my endo is at Froedtert & the University of Wisconsin Hospitals in Milwaukee. There are several endos on staff and about 5 different surgeons with experience in HPT problems. Is it worth having to acquaint an entirely different team from ground-on-up? You'll have to be the judge of that.
I wouldn't count out any MRI or CAT scans that might be out there, but "4D" hasnt crossed my reading yet.
Given your situation, similar to friends of mine with vastly different but unrelated medical conditions, you might end up in textbooks someday. Small consolation, huh?
Best of luck with that!