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Anyone have hypoparathyroidism or non-working parathyroid glands?
I am currently hyper-parathyroid, which has caused my osteoporosis to get much worse. I had unsuccessful surgery last year, as the surgeon could only locate two parathyroid glands, both appearing normal. He removed one gland that was encased in scar tissue from a previous thyroid surgery. He repositioned the 2nd gland.
I recently had a more sensitive scan that found a 3rd parathyroid gland that is "highly suspicious" for an adenoma. However, my new surgeon has concerns about removing it. He said surgery could cause my remaining parathyroid gland to stop working, leaving me with no working parathyroid gland. He said that would be very bad and I could end up worse than I am now. I have an appt with a different surgeon for a 2nd opinion this week.
Looking to connect with anyone who is hypoparathyroid, or has no working parathyroid glands. How are you treating the condition and what is life like for you?
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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.