Hyperparathyroidism - Options other than to "watch and wait".
Looking for help before my appt with an Endocrinologist regarding my high calcium and PHT levels. My calcium has been in the 10.1-10.4 range for over a year (possibly longer since I wasn't tested prior to that). I read at my age (72) anything above 10 is considered too high. Six months ago, my PHT was close to the "normal high" range (101.0) at 97.6 and now it's 103.7. I read if your calcium and PHT levels are both high, it indicates hyperparathyroidism. I have many of the symptoms: osteoporosis, insomnia, muscle pain, fatigue, headaches, constipation, GERD, thirsty, generally feeling bad most days. I saw an Endo Dr in Dec who wanted to "watch and wait". I'm not comfortable doing that now since my symptoms are so severe, my calcium is still high, my PHT has gone up, and I already have osteoporosis. I have a appt this week with a different Endo Dr. Any advice on questions to ask, what is needed to justify surgery? Has anyone made an appt with a surgeon to discuss this? I am desperate to feel better.
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yes and yes………….I watched and waited and no change………..now I have a broken arm and all the other symptoms you mentioned. In the united states the big hospitals have a legal/accounting term "capitation" and that basically says that doing minimal cost medical solutions brings bigger profits. i have an on-line interview with the Norman clinic in Florida. At least they don't lie to you = despite the fairly hefty cost. Keep researching and I understand taking these errant little parathyroids out is fairly minimal surgery (never take them all). Also, if you get a surgeon that doesn't do this tricky surgery all the time…………then 30% of the general surgeon population miss the bad gland. Then you have to go in "again"………………i live in Oregon in the US
Did you have any scans or tests to look for a tumor on your parathyroid glands? Did your doctor recommend parathyroid surgery and, if so, was it denied by the hospital and/or your insurance company? I have fairly severe symptoms even though my calcium and PTH are slightly above normal. Being you broke a bone, I'm assuming you have osteoporosis? Thanks much for your reply.
Yes and yes. However in my yearly checkups, my endo did never check the PTH……………….mine are not horribly above normal, but my calcium is high…..but also the vitamin D level is low (another indicator).
I did a scan (ultrasound only) and a bone density…………..There are other tests out there, but the norman clinic does this for "location" purposes. I have to get the bad gland out………..way too long and way too much damage.
I don't feel like myself either and sleep about 10 hours a night plus a nap…….These little glands are tiny tiny….and the Norman Clinic in Florida has a great video……..check out Parathyroid.com and off to the left is the film of the surgery……the gland looks more like an infection and less like a tumor that you can just clip off…
it is approved …..but after the damage was done…………..medical big corporate in the us……………..
I've seen the website you recommended, by the Norman Clinic, very informative. Did your ultrasound find a parathyroid tumor? Are you traveling from Oregon to FL for the surgery at the Norman Clinic? If so, is that because there's no Dr in your area who is willing to do the surgery? Sorry for so many questions. I really appreciate your feedback. My serum calcium, ionized calcium and PTH are slightly above normal and my Vit D was low so I'm on supplements. I hope the endocrinologist I see this week will think my levels are significant enough to run some scans and consider me for surgery since I have so many of the symptoms. Thanks again.
The video showing the surgery (the list on the left)………….was good.
Yes, there are two in our area but my trust level is down…..and yes they are certified in parathyroid…..??
I will talk to one on friday……Strangly I was on supplements like vit D and it didn't make abit of difference…..I also took calcium. The mistake here was that when you go to the store the "off the shelf" calcium is mostly calcium carbonate. The hardest to digest and the stomach pumps out acid in an effort (nausea and also constipation)….so make sure the calcium is water soluable…..citrate. But I like the calciumpeptite (spelling?). I am taking not much in the way of supplements (1 multivitamin and D3+K)…. In Oregon, Portland is the largest city and I saw where one guy had surgery in Idaho…..well, they did not get it all and had to go back in??? Make sure they are certified.
My endo doc said the ultrasound was inconclusive, but I have had a small thyroid(adema) for 10 years and do take Synthroid (brand version). The Norman clinic finds the little things by radiation…..but important with that is that I think they put iodine in the thyroid before they give you radiation (I think that is called sembati scan).
Iodine protects the regular thyroid from radiation (they don't like it and could cause cancer)
I am not terribly loaded with money but going to florida is possible……..motels have a taxi that drives you to and from the hospital (clinic). What is interesting to me is that it seems reports tell the story that people feel much better after a relatively short period of time. I just don't feel like myself – memory included.
More……………..one more reason I am not happy – for my bones, the endo wanted to treat the symptom with a super super expensive drug with massive side effects (Prolia and Densaub)………..This was for the osteoporosis. My cousin's kid in england is a doctor and I know that the names vary in different countries…..
I would never take that drug – 30,000 a year, a shot every month, side effects, etc, etc.
The cause (not the effect) could just be the errant parathroid…………….He has done the wait and see for 3 years…..
more again……..here is a web site from a specialized surgery center near LA, California……might be educational???
The stuff regarding parathyroid is the stuff (in the Diabetes / Endocrine group) I know least about. What caught my attention was the drug Prolia. I am on this drug for Osteoporosis. It was prescribed by my Endocrinologist. I am diabetic and have a history of hyperthyroidism. My Nephrologist also approved of it. I have stage 4 chronic kidney disease (CKD). It has been an injection once every 6 months. It has been covered by Medicare. These posts are part of a discussion regarding hyperparathyroidism. Why were the meds Prolia & D——— (sp?) recommended?
Update to my earlier post: Today the endocrinologist diagnosed me with Hyperparathyroidism and referred me to an endocrine surgeon. He said I probably have one or more tumors on my parathyroid glands, or the glands are enlarged and need to be removed. He recommended Reclast injections for my osteoporosis, but I am reluctant to get those right now.
enormous side effects (and cost)………….Denusaub was not able to get approval by the FDA (US) in about 1917………….
Stopping it mid-cycle tells the parathyroid gland to extract more calcium from the bones……"hyperwithdrawal". The promotions by big pharma has been incredible for Prolia and they chat up the spokesperson (ie, your doctor).
In the united states there is a capitation concept – goal of saving money for the big hospitals and this is cheaper to the hospitals than a surgery.