Parathyroidectomy soon or maybe later? Some direction sought here

Posted by musicbart @musicbart, Aug 6, 2023

I hope you might give me some info, direction and help on the matter of parathyroidectomy planning and thinking by me. I'm a slightly older than 75-year-old-guy who early this year, from various tests on calcium in blood, calcium in urine, bone density testing, PTH levels and then 3 key scans (US, CT, and sestamibi), was told by MDs that I really should undergo parathyroidectomy to remove one or more parathyroid glands. The analysis of my 24 hour urine catch showed no problem with calcium in urine. The 3 scans were *inconclusive*: the radiologists who read the CT and the sestamibi scans couldn't clearly find one (or more) parathyroid gland(s) larger and therefore abnormal. [The US (ultrasound) scan was done - I believe - just to study my neck and throat anatomy.] In late July, I met with an endocrine surgeon who told me that the 2 factors that indicate I need this surgery (in spite of not yet having awful medical problems from uncontrolled, unregulated calcium in my blood) are: 1) kidney stones (but this was long ago: there were 2 different times in the early 2000s when I had the 1st one which I caught in the strainer given to me and then analyzed in the lab---> it was the standard calcium type stone, and then another stone a few years after that 1st one, and NONE after those two), and 2) osteopenia (but I looked this up at Mayo or US Gov't or somewhere authoritative and learned that I think more than 50% of men over what was it, 50 or maybe 60 have osteopenia! [Incidentally: I asked my MD where I stand in the range of osteopenia. She said "Your bone density scores indicate you're right in the middle of osteopenia" if that news may matter here in this forum.] I said to the late July endocrine surgeon that since the 2 main scans were inconclusive, the 4 parathyroid glands must all be roughly the same side. He agreed and said that he'd remove either one or 3 of them based on what he sees happen to - I think - PTH *during* surgery. From some readings at the Tampa, FL Norman parathyroid-thyroid-adrenal surgery center, I learned that for a surgeon to know how to do this surgery really well, the surgeon should be doing at least 2 parathyroidectomies per week. I asked the late July surgeon how many he does. He said he does 2 per week (but he also does adrenal and thyroid surgeries so I don't know if he actually ever does 2 parathyroidectomies/week).

This coming Tues. I have a video call from another endocrine surgeon to find out what she's done and what she has to tell me.

Anyway, I wonder if you know how long this hyperparathyroidism takes to become really bad. Does it progress slowly? Is the progression based on speed with maybe older men (or people in general) having increasing problems as they age? You see, one friend, who knows nothing about this medical problem, thinks that maybe I can wait years before any surgery's done.

[Is anyone in the world doing any research on why the parathyroid glands become abnormal in some people? Is hyperparathyroidism due to our (in the US) lousy, dangerous, poisoned food system? Is it unseen and maybe unrecognized chemicals and hormone disruptors in our lives? Is it simply destiny from birth because one is genetically programmed to have this problem at some point emerge in life?]

What might you be able to tell me in the way of direction or helping info?

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

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I forgot to add that I mentioned to the late July endocrine surgeon that I was taking vitamin K2 and vitamin D to round up the calcium wandering around in my circulatory system to put it back in my bones and teeth: K2 and D -- both fat soluble vitamins (though D is really a hormone I understand) -- work together to do this. [I take the highest dose of atorvastatin too. The statins are known to cause calcium to leave bones and teeth and then become deposited in the arteries which is BAD and undesirable. I also have CAD (coronary artery disease) and my coronary arteries are moderately to severely calcified.] He said that I must stop taking the D because he said that those who have hyperparathyroidism (as I have) and who take vitamin D get into big troubles with calcium. I asked him for any published study on this and he said he only knows this from his own experiences. [He's maybe 40 but I'm only guessing.] I have stopped taking D but know it's important for a number of health reasons. Do any of you know about vitamin D causing big calcium troubles for those having hyperparathyroidism? Maybe I can get a small amount of D naturally from cod liver oil which seems to only have a small amount of it. I don't go into the sun much at all due to the skin type I have, due to my skin burn history in boyhood, and due to some head and leg squamous cell carcinoma lesions having been excised.]

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If you have high PTH you need to be sure your vitamin D level is not low. I have high PTH and take D, I take 25000 iu per week.

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I don’t know a lot about this, but my daughter had a total thyroidectomy 2 years ago and had several nodules taken out that were cancerous or that would turn cancerous if left. She is 45 years old and has been cancer free now since the surgery 2 years ago. From my understanding, nodules take a long time to grow (10 years at least) and if you’re just finding them now and are already in your late 70’s, you may want to skip the surgery. Surgery can always cause other issues, but it’s obviously your call. My daughter healed well and is living a normal life, but needs Synthroid and Cytomel for the rest of her life as she is now without a Thyroid. I wish you good health on your journey!

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I’m 75 and had this procedure done last year. Two glands were identified as possibly causing high calcium and PTH levels. I had developed osteopenia and a small gall stone. Here’s how the procedure worked - they removed the obvious hyper parathyroid. While still in surgery they checked my calcium levels. Since the calcium levels dropped to normal there was no need to remove the second one. I spent one night in the hospital. It was a fairly painless procedure and quick recovery. I did feel so much better afterwards. For me, having the surgery was the right decision.

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