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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You mentioned moments like with the garage door and not knowing how to operate the opener…I had a few of those moments too like unable to locate a letter on keyboard all of sudden just odd surprising blank moments. Immediately upon waking post surgery my head felt so clear and I believe that undefinable fog has lifted. Amazing what too much calcium in the blood can do to a person. Hope surgery will alleviate those moments for you too
Thanks arctictraveler for that interesting statement. Today I meet with my internist MD and will tell him about the odd, bizarre, sudden memory losses that occurred with the sudden, intense nausea "spells" that each lasted only ~ 30 seconds to maybe a full minute.
Maybe he'll have something to say about great, top parathyroid surgery locations though I may still be heading south for that.
You want expert surgeons who will find all 4 glands. You always want all 4 checked so you don't have to have another surgery.
I had hyperparathyroid and osteoporosis. I had surgery to remove one of the 4 we have. I now take Calcitrol daily, with calcium supplements and I get Prolia shots every 6 months. So far bones density improved and nothing else went wrong. Plus I have had hypothyroidism for a couple decades now.
Surgery is the only cure as I am presuming secondary HPT has been ruled out. I was misdiagnosed for 14 years due to normohormonal HPT, meaning elevated calcium but normal PTH and a lack of understanding in the medical field of the inverse relationship that should exist between PTH and calcium. Diagnosed with osteoporosis at 55 having lost 1,5 inches in height. My parathyroidectomy was done October 30 and it was the best thing ever. My adenoma weighed in at 676mg and was in my chest below my collarbone. Find an excellent surgeon with A LOT of experience with PARAthyroid surgery and be certain the surgeon does a 4 gland exploration as well as intraoperative PTH testing. I repeat THERE IS NO CURE other than surgery for primary hyperparathyroidism. I had an excellent surgeon at Penn Medicine in Princeton. I did NOT use an ENT but an Endocrine Surgeon (a general surgeon with a separate residency in endocrine surgery).
Hi, I was just reading the parathyroid sites and ran across your post from May of 2024.
I thought I would weigh in.
I’m a 68 year old female who’s always been young for my age in terms of fitness.
About 2011, my hair started thinning on top and I couldn’t sing anymore. I grew these knobs on my fingers at the joints, had a bone scan marking osteoporosis and an abdominal scan showing lots of kidney stones. What???
I was going through stress of losing my mom and 3 siblings during that time and taking care of each of their estates and blamed stress for my health problems.
I had an inability to concentrate or remember things. I couldn’t prioritize, I now had insomnia and high blood pressure and would get horribly sharp cramps in my thighs. My face started breaking out, I was exhausted always and I know there are more symptoms but as you can see, I was falling apart.
Anyway, I went to 4 docs in Vancouver wa where I live. A nurse practitioner, an endochronolgist, a cardiologist and an internist. They ran tests for 1.5 years without a diagnosis.
I finally took
It into my own hands and with my lab results and symptoms wrote to Dr. Norman asking for his opinion. He returned my message confirming what I suspected. I had read every word on his site regarding hyperparathyroidism and was very informed because of that.
He could tell instantly that’s what I had and my docs in town, couldn’t, after a year and a half of tests.
I ended up going to see Dr. Deva Boone in Scottsdale Arizona. She was dr. Norman’s top surgeon for 8 years and then opened her own place. The flight was much shorter than going to Tampa.
October 25, I had the surgery, it was out patient 9:30 am and released about 1:00. Medicare pays. She removed a 3/4 inch tumor on one of my glands annd gave me an poloroid of it sitting on a ruler. She did check all 4 glands. My blood calcium instantly reduced to 9.2 Also, my THS number instantly went down from 81 to 20. The surgery took 30 minutes, max, but doing a paper work and then post surgery recovery took the remaining time. They do put you under. My calcium number had been dancing around 10.4 to 11.9 since 2005 and none of my doctors were worried about it! So I wasn’t either.
I can concentrate now, I’m not exhausted, my fingernails are growing like mad, I can sing again, cramps have stopped and I’m not forgetful anymore. I’m taking calcium daily and I0 months time, my bones will restrengthen. My blood pressure and Cholesteral went down.
They say the longer you have the condition the more it destroys your organs, one by one. (both my kidney and liver lab tests were high)
Please take this very seriously. Your life may depend on it and I am suddenly free of so many symptoms.
This is long, I know, but I am trying to help as many people as I can so they don’t have this wrecking their body for years.
Best regards and good luck!
Hello @healednow and welcome to Mayo Connect. I appreciate you sharing your journey with hyperparathyroidism. The fact that you advocated for yourself and kept searching for answers and treatment is remarkable! Persistence is often the key to getting the needed medical help. How great that you are feeling so much better now.
Before your surgery, did you have scans that revealed the tumor on your parathyroid gland?
@healednow I also want to welcome you to Mayo Clinic Connect. I’m so happy for your success story about your hyperparathyroidism journey! Do you have adequate follow up moving forward?
I just want to comment on the fact that you’re almost 77 years old and the surgery to remove your Thyroid is lengthy…could take several hours and for an elderly person, anasthesia can be damaging to the brain. My daughter had Thyroid Cancer 2 years ago and had her Thyroid removed, along with several nodules. The surgery takes time as there are many nerves that can be damaged during this surgery. I just wanted to say Good Luck, should you decide to do this and please make sure to ask a lot of questions!
If Dr. Boone was Dr. Normans top surgeon you know you were in great hands! Glad you researched top surgeons before letting some hack butcher you. My wife had Dr. Michell at Tampa do her surgery. Best surgery she ever experienced! These people are awesome!