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Parathyroidectomy soon or maybe later? Some direction sought here
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?
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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.]
If you’re having surgery make sure that the surgeon knows what he’s doing. My wife went to the Norman Center in Florida for this surgery. This was the best thing we ever did. These doctors are the best. You don’t want some rookie exploring your neck and damaging your vocal cords. The surgeon here said she had 1 tumor and she was only going to look for that one. She ended up with 3 removed in Florida. If you can afford it it’s the best money you’ll ever spend.
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1 ReactionI think you should ask a surgeon regarding the urgency of the surgery. However, surgery is the only cure for hyperparathyroidism. I'm 72 and was diagnosed with hyperparathyroidism based on blood work. I had a sestamibi CT scan that didn't clearly show anything but my surgeon saw a shadow that he thinks is the problem gland. No scans are 100% accurate for finding adenomas.
I have bad osteoporosis so need to have the surgery. My surgery is in 4 days with a general surgeon who specializes in endocrine surgery.
If you have access to Facebook, there is a support group you can join that has very helpful information, and you can ask questions from others with this condition. The FB page is "Hyperparathyroidism Support and Information".
My surgeon and endocrine doctors never gold me to stop taking vitamin D.
Thanks riflemanz64 for your help. I'm glad your wife was helped by Norman Surgery Center in Tampa, FL. Yes, I know that the bad outcomes include nerve damage (i. e. damage to one or both vocal cords so that one's voice is ruined or maybe even entirely lost?), hematoma, infection, and removal of too many of the tiny glands (which I know become larger when ailing, when abnormal).
ripley, thank you for your help. I hope your surgery goes perfectly for you, that the outcome is tip-top. I've never wanted to join FB so I'm still not engaged with it in any way. It does sound though that I'd get more good help if I did join up with FB if only to use that hyperparathyroidism support group.
I miss taking vitamin D because it's so important, as you know. I meet with my geriatrics MD this Friday and will bring up this vitamin D matter along with other things.
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1 ReactionI take Vit D, 25000 iu per week with my endocrin doc approval. I have high PTH since Jan 2020, and maybe before, and other numbers all good, and he does not recommend any surgery now. Never heard if D problems and calcium.
hi, lilyann here, reading your note about bad outcomes. i think i am in that class as i cannot speak very well, strain at a whisper, my whole right side where i had the radical dissection of the thyroid feels awful the whole right section of my body and hard to bring my rt. arm up to my head. i had 11 of 19 lymph nodes removed with those 11 being cancer. so now, i am having a hard time swallowing. my surgeries were in january and march of 2023. wish you the best musichart.
Thanks lilyann for your kind wishes.
I'm sorry you've suffered so much.
Hi - I saved your message. I live in Portland, Oregon and just got back from Florida at the Norman Clinic. I agree with you I had Providence endocrinologist in our Oregon local. Well it was the "wait and see" medical suggestion. My feeling was that this was to save the "corp hospital" money????...........anyway within the wait and see time (4 years) period I broke a wrist, a shoulder and rolled into the osteoporosis category. Finally I self referred to Florida. During the 4 years of waiting (the hospital here did no PHTH test until two years ago). The trip to florida was long and a hassle, but they have a shuttle and hotel all set up - this part was good. Truly a production line, but focused and my surgeon was great. I had one large one removed and being hopeful for my bones - voice is fine, neck is fine, I feel fine one day after. They found the errant gland quickly (over 1 inch which is fairly large) and I do have 3 left.....I am told to go heavy on the calcium for about 6 weeks in order to remind the dormant ones to wake up. There is a parathyroid surgery center in LA.........in general--------see a specialist and believe me, there are not many. NIH is a great place to research for clinical studies. The bone matrix will be eroded away as one gets older - no recourse. Marceen740@gmail.com
Glad to hear everything went smoothly. We loved it in Tampa.