Connect
← Return to Anyone have hypoparathyroidism or non-working parathyroid glands?
Discussion
Anyone have hypoparathyroidism or non-working parathyroid glands?
Diabetes & Endocrine System | Last Active: 4 days ago | Replies (9)Comment receiving replies
I’m new to the group and trying to learn about Hypoparathyroid. Can I ask how you discovered you had it? Was it just by bloodwork or is there a test they can do such as a scan of your parathyroid to find out if you have nodules? Just started the process of a 2nd opinion. First Dr said it’s FHH and not Parathyroidism.
Replies to "I’m new to the group and trying to learn about Hypoparathyroid. Can I ask how you..."
Hello @lonsy, I am post-surgical (parathyroidectomy) hypoparathyroidism. Initially, back in 2018, I had high calcium (hypercalcemia) and high PTH, called out by routine bloodwork by an awesome cardiologist. "Watch and wait" for several years. After being diagnosed with full-on osteoporosis, endocrinologist encouraged surgery. I had an expert surgeon at a teaching hospital. Difficult surgery - used to be called hyperplasia - now called multi-gland disease. Surgeon removed 3.5 parathyroids and implanted the remaining .5 in my neck muscle. It never really "woke up" altho my current endo says it's good that I have even a little PTH. My calcium is consistently at the very low end of normal (around 8.7) PTH was negligible for a long while, now around 7. I take 0.025mcg calcitriol daily, about 1200 mg calcium (both citrate and carbonate) plus dietary calcium and 5000iu D3 daily. I am very diligent with my diet and supplements to maintain stable calcium. You might check out the Hypoparathyroidism Association. Best wishes to you.
Connect
Hi, @lonsy.
Welcome to Mayo Clinic Connect. You mention wanting to learn about HYPOparathyroidism, but the content of the remainder of your post seems HYPERparathyroidism might be what you mean.
A symptom of hyperparathyroidism is a high calcium level (hypercalcemia), and it’s usually diagnosed through blood tests that measure levels of calcium and parathyroid hormone (PTH) in your blood.
When I was diagnosed with hyperparathyroidism it was through the blood tests. After the diagnosis, which was many years ago, I believe I had a scan and/or a biopsy (I can't remember exactly after all these years), followed by surgery (removal of one of the parathyroid glands.
FHH is a genetic disorder, and a high calcium level is also a symptom of FHH. So, these two conditions (hyperparathyroidism and FHH are sometimes confused with each other.
Here's a link to an article that tells how FHH is differentiated from hyperparathyroidism. Hope it helps you.
https://pubmed.ncbi.nlm.nih.gov/23425644/