Any one been diagnosed with Primary Hyperparathyroidism

Yes katya12, a new endocrinologist may be very helpful for you! In 2017 my pcp sent me to an endocrinologist in our town since my parathyroid numbers were not normal. That endo Dr said all I needed to do was take more vitamin D. Well he was wrong about that and 4 years later when my parathyroid numbers got even worse my new nephrologist and pcp wanted me to see an endocrinologist again. I told my primary care Dr that I did not want to see the same endocrinologist I saw in 2017. She said, oh he is no longer with our health system. Good I said! I saw a new endocrinologist who had very good reviews online when I researched him and at my first appointment with him, he said he believed I had hyperparathyroids and set up scans to check them. He then sent me to a thyroid and parathyroid surgeon who has done many successful parathyroid surgeries. He said that I needed surgery to remover the overactive ones. Wish I had seen him in 2017. But you can’t look back and so we just do our best to stay positive about our health and go forward. Good luck to you finding a new endo Dr. If you live near a large teaching hospital maybe that would be a good place to start you search. Sending healing and wellness wishes to you.

Thank you for your reply. I am currently seeing the assistant director of endocrinology at the University of Iowa. I thought I was seeing the best person, but I think she is too busy. I have never been told anything about parathyroids. I know about them. I was told that I have an enlarged thyroid, and I have two nodules in my thyroid that are not cancerous. I am going to have another scan in February to see if the nodules have grown.

I hope you are enjoying your holidays. I hope your scan turns out well. I'm going to be okay.

I was diagnosed last May after 13 years of high blood calcium. I had surgery October 30. I had normohormonal HPT which confused the issue as so many physicians have not a clue unless PTH and calcium are high. My osteoporosis in my non dominant forearm was horrendous at -4.2 and I have had kidney stones since 2017. There is a low incidence temporary thing that can sometimes happen after surgery. My thyroid got a little annoyed due to the 3 hour surgery and I developed thyroiditis (first hyper and now hypo) that I just have to ride out. My symptoms including the brain fog disappeared after surgery and are, unfortunately, back. We are holding tight for it to reset itself. Even with this, I was so happy to have finally gotten a diagnosis and had the surgery. My bones are rebuilding. Good Luck!

There is a hyperparathyroidism group on FB with a surgeon recommendation file. My adenoma, found with Sestambi and 4D scans, was in my upper chest below my collarbone so opted for a general surgeon with a specialization in endocrine surgery rather than an ENT. We had a thoracic surgeon on standby if the surgeon couldn’t remove through a neck incision but he spent 3 hours with me tipped in beyond trendelenberg to get Larry the Bone Sucking Tumor out. Get recommendations, do online research, ask how many parathyroidectomy surgeries they do per week, month, year. Make sure intraoperative PTH levels will be taken. Make sure the surgeon will commit to a 4 gland exploratory as those scans are only 50% accurate. Mayo and The Norman Parathyroid Center are highly recommended options.

Yes.............these little parathyroids are hard to find and they have a different function than a regular thyroid.........yes, both are glands. Mine was "hiding" behind my regular thyroid and supposedly hard to detect. My endo doc or the hospital did not go farther in terms of tests - the gland (only one bad one) was taken out at the Norman Clinic and the main trick is finding the bad one and they have the specialists that can do that. There is a video on their web site.
Previously I went to a large hospital in Oregon and my dexa chart was going quickly downhill (the bad thyroid was causing depletion from the bones). I can't replace the lost bone material but at least the "depletion" is stopped. There is a thing called capitation in which the doctors who practice within large hospital groups want to save the hospital's p&l so they delay on the "expensive" procedures. My tumor was 1 inch which is large to miss on my little neck???? I am glad I made my own decision. Endo doc's main customers are diabetic and this is a speciality area - so do your research..............best of luck. Yes, I felt better 1 week after surgery.....a huge difference!!!

You are proof that we are our own best advocate! A one inch tumor? That was a hard one to miss I would think! Good you didn't just rely on what you were told at first.

Sorry long post, need info please. Hello @cmael, where did you have your parathyroid surgery? Was it at Mayo Rochester? Your user name looks familiar to me from the transplant group. I had a kidney transplant and bilateral nephrectomy at Mayo Rochester 12/2020. I have had high PTH and high blood calcium for many years (10?) and they had attributed it to secondary to kidney failure due to PKD. My levels did not go down, and put on very expensive Cinacalcet. Levels went down for a bit, but back up after I was taken off. At that time I suggested having surgery rather than pay $100/mo co-pay for Cinacalcet which only masks the problem. I had a nuclear PTH scan at Mayo last November and they could see adenomas on likely at least three of my parathyroids or at minimum both sides. I don’t have osteoporosis-bone density is normal. Tentative surgery for May/June at Mayo. I had read and watched video from Norman Center years ago. I know they are experts at minimally invasive and checking all four. I would like to know anyone’s experience at Mayo for this surgery. Thank you for your input. @katya12 I see you are being treated at UIHC. What is your status now? My family and I have a lot of history there. I live in Cedar Rapids. I am curious to know how you are doing and if they are treating your PTH.
My main question is whether Mayo is as good as Norman? I had a video visit with Dr Daniel Hurley endocrinologist at Mayo who is very nice, and surgery would be scheduled with a surgeon who specializes in this for minimally invasive, but he appeared to be saying the incision would be larger than I remembered from Norman’s video. I would have an ultrasound and tests one day then surgery the next day at Mayo Rochester. Thanks for your help!

Wife had her surgery at Norman in Florida and had a very small incision. They took out 3 glands and checked her thyroid for nodules. She is now completely normal. Best experience we’ve ever had for surgery.

@marceen @riflemanz64 I also traveled to Florida to have the parathyroid surgery done in 2008 by Dr Norman.
The tumor was about an inch. Dr Norman gave me an actual size photo..

I felt so much better after one day!