Hyperparathyroidism - Options other than to "watch and wait".

Posted by ripley @ripley, May 21, 2023

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.

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

@ripley

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.

Jump to this post

research carefully.................... drugs.com is a good start but go to research sites

REPLY

@ripley, did you ever get the surgery? How did it go?

REPLY
@cehunt57

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?

Jump to this post

I have read books and I don't know why docs can't see through the horrible osteoporosis drug....Fosamax has been off the market for abit.......but they had to pay a fine of 27 million. Only 17% of the patients that take prolia are pleased ....and....massive side effects.
Yes, my endo and another bone clinic doc recommended it..............(Prolia and Denusaub)......The big pharma companies push and push. My endo doc up here (finally after 3 years) did recommend surgery for the parathyroid..........I am going to florida in two weeks. If you look up http://www.parathyroid.com you can see the operation in full video........You will also find in research that the bone will recover afterwards to some extent. Research in the medical journals is good.....also key with prolia is that if you stop the drug then somehow the gland decides it needs to suck up more calcium from your bones and you end up worse than before.....Some of the larger cities have a teaching hospital and the library and librarians are very helpful. Research results can be alot, but the NIH can sort by date and country. I don't know about kidney problems....but.....the librarian can certainly bring up studies that have those "key words". You can also write the pharm company that makes it and they can fax you a report (obviously pro shots though).....Pubmed.com is also good and can sort...... drugs.com also can show user's evaluations of any drug. You have to do the research - not that they will listen (ha) but it is your body..............

REPLY
@ripley

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.

Jump to this post

I just wrote another response...........check it out and do the research.............!!!!
The parathyroid is only the size of a grain of rice and/or a pea.......so you need to have someone really qualified..............Yes, another person mentioned a parathyroid surgeon group in Beverly Hills California. I am going to the http://www.parathyroid.com clinic in florida. They have a great web site and you can see how tricky it is to find these tiny little suckers - 30% of surgeon miss it and it has to be done again. Also, there is a process to "train" the remaining parathyroids to take over - if you don't take calcium in the right amount immediately after, it can cause problems. Key word if you do research is "Hungry Bone Disease". My folder doesn't have lots of Reclast info but check out http://www.drugs.com . Side effects - safety notes for Prolia include - no pregnacy, low blood pressure, trouble breathing, tight throat, itching, hives, lower blood calcium, severe jaw bone problems, unusual thigh bone fractures, skin infections, heart inflamation, etc, etc. Reclast is in the category of a bisphophonate....along with Fosamax (27 million dollar law suite and not on the market anymore). The jaw and thigh are the big ones for atypical femur fractures.......The research papers are out there, but takes time. You don't have to be a scientist but look at the study goal in the first paragraph and
then the conclusion at the end...The local medical library can help.........pubmed.com......and also the NIH library. PS - Parathyroids are amazing and control alot of the human body.....there are 4 and you never never take out all 4. There is a radioactive tracer that can find the errant one........They are very very tiny so easy to miss - it takes a very good surgeon.
I live in Oregon in the US

REPLY
@scolio

@ripley, did you ever get the surgery? How did it go?

Jump to this post

I am going in 3 weeks...........................it is suppose to take one hour................This speciality clinic is all they do.

REPLY
@ripley

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.

Jump to this post

The watch and wait was not the right thing to do............during this time, I have broken my wrist and then I fell and broke my shoulder................The surgeon my endo doc wanted did not even have a board certification FCS after her name.......This is very specialized.

I will find out, but these little super active glands need to come out - "just the bad ones" as we definitely need the rest. We have 4. Also the medical did not even know about these until late 19th century...........and called it Gley's gland. It is not really a thyroid........"para" in latin just means "close to". This is a "specialized surgery" just like cosmetic surgery. Would you want a stent surgeon to mess with your face??? The clinic in LA has an informative web site also..................Also forget calcium carbonate (isn't water soluable and give you constipation)........go with calcium citrate or calcium peptite......

REPLY

My wife went to the Norman center in Florida for surgery after her surgeon here said she was only taking the gland out that they saw on the scan and not checking the other 3. Didn’t have a clue what she was doing. My wife had 3 tumors removed by Dr. Mitchell. Great place to have surgery. They check all 4 glands during surgery. During Covid there was no consult fee. Airfare was cheap too because nobody was flying. We had a great time in Tampa.
Best surgery my wife ever had.
These people are at the top of their class. Let us know how it went.

REPLY
Please sign in or register to post a reply.