Anyone have hypoparathyroidism or non-working parathyroid glands?

Get an appointment with the Norman Parathyroid hospital. These people are the top surgeons in the nation. I made my wife go there after hearing the stories of doctors not being able to find the rice size glands.

I have hypothyroidism, discovered back in 2001 by my transplant doctor about a year after my lived transplant. I take Levothyroxine. I was diagnosed with osteoporosis in 2018 and my Endocrinologist also found parathyroid issues causing my bone issue. I had 1 thst was enlarged of the 4 parathyroid glands. I had it removed a few years ago and now take Calcitrol with some vitamin/mineral supplements. Plus I started Prolia shots every 6 months. So far my bone scans have improved and my calcium levels increased along with vitamin D.

I also have no thyroid so take Synthroid.

Do you have any working Parathyroid glands? It sounds like you have 3 glands left after the enlarged one was removed. But you also said that you take Calcitriol which I read was to treat hyperparathyroidism. So it sounds like the removal of the enlarged gland didn't resolve the issue of high parathyroid hormone in your system.

Do you have any side effects from the Calcitriol?

I am looking for people with no working parathyroid glands for advice since my endo surgeon is concerned that may happen to me if I have the enlarged parathyroid removed. But if surgery is not an option, I will ask my Dr if Calcitriol might help.

Thanks.

Calcitrol is an activated vitamin D to help process the calcium to help strengthen the bones. Never had a side affect and it's been 5 years now. I take 25mcg daily. I take other supplements and my understanding is some of the OTC vitamins and minerals do not breakdown all the way. You get benefits but your body has to modify the supplements I order for the body to absorb them. Yes I had hyperparathyroid as you stated. My thyroid is hypo so I take 200mcg of Levothyroxine daily (just upgraded from 175mcg) at night. I take the Levothyroxine at night when I am not taking any calcium or vitamin D supplements.

Your doctor is correct that not having any working parathyroids is very bad juju.

I had both hyperparathyroidism and papillary thyroid cancer. On top of that, one of my parathyroids was ectopic, apparently intricately woven into my thymus. When the surgeon went in, he found four-gland hyperplasia, meaning that pretty much all of my parathyroids sucked. He dissected out the ectopic gland and removed two more, leaving me with the one he thought looked best. We watched my numbers anxiously for the next couple of weeks to see if it was going to start working for me - it did! Even still, I am considered hypoparathyroid now. Probably one of the most important things to be aware of is that some of the bone building medications can further damage the parathyroids (I think Tymlos is in this category), so be sure your endocrinologist considers this.

I also take Calcitriol, as others have mentioned. As I understand it, once you start taking it for the long term, you pretty much have to take it forever, as your body decides to let it do the heavy lifting and stops making Vitamin D for you.

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.

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/

@lonsy, here is another article that may be of interest to you: https://www.parathyroid.com/FHH.htm

Also, if you go to the top of the page and do two searches you will be able to pull up threads and read other Connect members' experiences. Just type in FHH, and then press Enter for one search. There are just a few threads, not many. For the second search, type in hyperparathyroidism, and press Enter. There's a wide array of threads on that subject.

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.