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My hyperparathyroidism's worsening it seems. Surgery ahead?
I'm a 76.7 years old guy living alone. In Dec. 2022, a blood study indicated that more info/data were needed to know about suspected hyperparathyroidism in me. In 2023 a number of tests were done along with a bone scan which was done in July 2023 and found my bones to be in the middle of the range for osteopenia. The endocrinologist told me last year I really should have surgery for my primary hyperparathyroidism. After reading a bit about this medical problem last year, it seemed to me that there's too much guess work by MDs who try to figure out which of the 4 tiny glands has gone haywire and has to be excised. I told the endocrinologist that I'd like my levels followed over time to see what changes. Well, after blood calcium scores in Dec. 2022 and in 2023 running from 10.9 (Dec. 2022) to 10.2 to 10.6 (in 2023) and just 5 days ago now 10.5, and with my PTH scores in 2023 from 89.9 (Jan. 2023) to 71.1 (late Aug. 2023) and just 5 days ago shooting all the way up to 104.2, I'm getting scared and hope to meet with the endocrinologist very soon. The only physical symptom I have is very stubborn, severe constipation (but even though I like water, I'm never thirsty and forget to drink the required 3.7 liters for men every day-- maybe my failure to drink adequate water accounts for the awful constipation- I don't know).
I did have kidney stones in the very early 2000s but none for years which is a mystery to me. [When I had my 1st one ~ 2001 or 2002, I was given a special funnel strainer to catch the stone on its way out of me. I did catch it, brought it in, and was told that the lab found it to be the standard, common calcium type kidney stone. But none after that 1st and 2nd one long ago.]
Any other men here with scores scary as mine seem to be to me?
Has anyone here gone to that self-declared top parathyroid surgery place in Tampa, FL? How were surgical outcomes there?
I'm worried about parathyroid surgery causing bad injuries to the nerves serving the vocal cords-- this is a known risk. I read that one really has to find a tip-top, very experienced surgeon to do one's parathyroid surgery. I live alone and have no one to speak for me in case I can't speak.
Tell me what you can. Thanks, musicbart
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@musicbart hi there I went to Dr Norman in Tampa for my surgery 2008.
I did have a vocal cord issue afterwards that took about 2 months to heal.
However, having the surgery done was the only decision I could make because I was feeling awful. My blood calcium level was 11.1 and my body was making me sick. I had a brain bleed too because of the high calcium level.
The day after the surgery, I felt so much better. It was as if a blanket was lifted off me and I was alive again!
The Norman group was great. I have to believe that they are not the only game in town. There are ENTs who also perform that surgery.
Good luck to you!
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4 ReactionsThanks SusanEllen66 for your kind and helpful reply to my statements and my gland troubles. An NP or PA told me last year that a stretch type injury to the nerve(s) going to the vocal cords can heal- it just takes time to improve. But she said the really bad injury in the complete severing of the nerve(s) which I suppose causes permanent loss of the voice *IF* both side nerves -- the LEFT one and the RIGHT one -- are damaged in this same awful way. I think if the vocal cord nerve on only 1 side is forever severed, then one just has a lousy voice for life following parathyroid surgery.
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1 ReactionMy wife had surgery in Tampa at Norman center and it was everything that was described. All 4 glands were checked. 3 were removed, back in the hotel by noon. I give it a 5 ***** rating. Best surgeons in the world. Wife is normal now.
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1 ReactionThe vocal cord was not an issue for me........I went to the Norman Clinic and the docs were great....a one day event and I felt much much better. "I even had dinner the night after surgery".
In the final description of the surgery, they "wrap" the surrounding areas = probably for protection when they do the parathyroid removal.....if you watch the video on their web site, it will help you in your worry. There is also a clinic in southern California which is good .
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2 ReactionsAnyone had a high PTH level and normal calcium levels.? My PTH was at 122.7 and calcium level 10. I did a urine catch and calcium levels normal. But I seem to have most of the symptoms of hyperthyroidism, along with a diagnosis of osteoporosis. I do have hypothyroidism, which went into hyperthyroidism after receiving Covid vaccine in 2021. Took over 2 years to get it back to hypothyroid mode. After genetic testing, I found out I had the MTHFR gene variation (T/T) and started taking methylated vitamins. They made me feel a little better. I looked into Dr. Norman but I live in Montana. I also have chronic pain from stroke in '98 and spinal fusion in '17. I just want to feel better. It is so discouraging to feel rotten every single day. Any ideas? I will turn 75 next month.
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1 ReactionMy pth went from 85 to 120 to 188
Blood calcium 9.8 urine calcium
Very low have CKD
So far no answers. Just come back in 3 months
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1 ReactionMy PTH seems to vary but stays well above normal. My calcium is high but normal, all other test results normal, and no symptoms. My endocrinologist is checking me every 6 months now, and said he does not think I will need surgery. I have hypothyroidism (controlled) and no other health issues.
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1 ReactionDoes diet and fasting effect lab results? Sometimes, depending on what I eat or don't, prior to labs can impact the numbers. This has been true for blood pressure, sugar monitoring, or medications taken. Just curious since my thyroid is new area of concern.
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1 ReactionYou should read the Calcium Pro app from the Norman Center. Your calcium should be below 10! Even though the range of calcium of 10+ is rated normal, the surgeons at the Norman center point out that is too high for someone over 50. Your calcium combined with your PRH levels clearly puts you in hyperparathyroid territory. There is also a center in San Francisco that does many cases. Your expenses may be tax deductible if you fly to another state for surgery. It is important to see someone who does a lot of the procedure. But please don’t delay, the damage high calcium causes continues to take its toll. Good luck.
i had the surgery for Hyperparathyroidism a few years back. they did blood work and found out that's what i had. but before they did that. the gave me Iodine to see which one of the 4 was bad. they took it out and i have about a 3-4 inch scar on my throat. you really can't see it if you don't know where to look. and i've been doing fine since then.
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