Hyperparathyroidism

Hello lightluz,
I had surgery for hyperparathyroidism after going undiagnosed for many years. Hyperparathyroidism can wreak havoc on your body and the only way to treat it is with surgery. Finally my condition was discovered and I had the surgery in 2021 to remove 2.5 of my parathyroids. I was 68 at the time. The most important thing is to find an experienced surgeon who does many parathyroid surgeries every year. Not all surgeons are experienced in parathyroid surgeries and it makes a big difference. So find one who is. That is my best advice. I found a great surgeon in our area. I had the surgery at 7:30 am and was back home that day by 5 pm. They will give you instructions as to what to eat (a soft diet) after surgery and will make sure you go home with calcium pills as your blood calcium may dip for a few days and taking calcium citrate or Tums (calcium carbonate) will bring your blood calcium back to normal levels. I only needed to take extra strength Tylenol for a few days after surgery for pain. It took care of the pain just fine. After surgery I spent about 3 days resting on the sofa reading and watching tv. I slept fine in my bed at night and in a week I felt I could get back to all of my normal daily activities. You may be younger than me and may bounce back faster. I am retired so I didn't have young children to take care of and I didn't have to take off time from work, but I'd say to plan on 3 to 5 days off of work unless you have a strenuous job, then maybe more. I had some meals prepared in the freezer and plenty of soup, yogurt and ice cream on hand for those first few days. Due to my great surgeon I have a very minimal one inch scar on my neck. I can barely see it. My issues this condition caused, osteoporosis, kidney stones, fatigue, high blood calcium and brain fog were improved after the surgery. I hope the same will be true for you. You will feel a lot better after those diseased parathyroids are out! My vocal cords were not affected by the surgery which can happen with this surgery. That's another reason to find a good surgeon who is very experienced in parathyroid surgery. Best of luck for your upcoming surgery and sending healing and wellness wishes to you. ❤️

Dear @ssmab :
I hope you're doing well. I wanted to sincerely thank you for taking the time to answer my questions about being diagnosed with hyperparathyroidism. Your response was incredibly detailed, kind, and helpful, and I really appreciate the care you took in sharing your experience.

Just to give you a bit more context, I’m 63 years old, and I’ve been living with *osteoporosis*. This was actually how the issue with my parathyroid was discovered during some routine testing. So, your insights have been especially valuable to me as I navigate this new challenge.

I was also wondering if you could share a bit more about your doctor. Where is he located? I’m looking to make sure I have the best care moving forward and would love any recommendations.

Hi, lighluz -- Thought I would add in my two cents. I was diagnosed with hyperparathyroidism after my PCP and urologist had overlooked my high blood and urine calcium levels for 10 years; I had even had two bouts of kidney stones that had to be removed. A DXA scan showed severe osteoporosis, presumably due to the parathyroid problem. In any case, at age 72 I had surgery to remove the parathyroid tumor. I was nervous about the surgery -- who wants to have someone cut their neck!! But all went exceedingly fine. My experience was very similar to ssmab's in terms of post-surgery recommendations from the doctor and the outcome of the surgery (blood calcium levels down; PTH back to normal). In my case, I had absolutely no pain afterward, and went back to work the very next day. My surgeon was Dr. Cord Sturgeon, at Northwestern in Chicago, a really nice man. He had apparently trained under a parathyroid surgeon in San Francisco (at UCSF), but I don't know that doctor's name.

Meanwhile, of course, my osteoporosis is getting better. But I have had to take Tymlos to restore bone, since the PTH anomalies had caused so much damage.

I had one parathyroid removed in 2013 due to high blood calcium, ultimately hyper parathyroidism. I do remember having some trouble swallowing afterwards but that resolved. I had no other extraordinary issues. I’ve been fine ever since then. Blood calcium has been in the normal range though some osteoporosis meds like Tymlos can raise blood calcium levels. After stopping Tymlos. Levels went back to normal.

Hi again lightluz,
I am glad that my post helped you!
My surgeon was Dr Stephen Wysong at Bronson Hospital in Kalamazoo MI. The endocrinologist I saw (and who diagnosed me) told me that Dr Wysong was an excellent surgeon and had an expertise in parathyroid and thyroid surgery. He told me he was well known in West Michigan and that he does many parathyroid surgeries every year. I was thrilled to have an expert surgeon right in my area. I did call his office and talked to one of his nurses who gave me a very good report on him and on his skill level. So I felt confident going into surgery. My suggestion is to ask your Doctors, your Dentist and any nurses you know in your town if they know of an excellent experienced parathyroid surgeon in your area. You can call that surgeon's office and inquire as to how many parathyroid surgeries he or she does each year.
I do know that on MayoConnect people have mentioned the Norman Endocrine Center in Tampa Florida. Dr. Norman and the others surgeons there are well known for this type of surgery and I believe that is all that they do there. People have mentioned flying there for their surgery and being very pleased with their experience. You can read about them on parathyroid.com. There are many patient stories and recommendations for Dr. Norman and the other surgeons there. I don't personally know of anyone who has gone there tho.
I think you are very fortunate that they found your condition early. Best wishes to you❤️

I had surgery about 20 years ago. It was a minimally invasive approach through my side rather than the neck.
As others have said you want to seek out the experts for this particular kind of surgery.

Just to give you all a different perspective, I have hyperparathyroidism (PTH was 177 a few years ago, now is 103) and your doc should be looking at the calcium levels in your blood and urine as well at PTH. I have no symptoms, not bone or kidney problems, so my doc is monitoring me every 6 months. There are tests to check various body parts that can be affected by PTH, but elevated calcium is the first bad sign. So not everyone with elevated parathyroid hormone needs surgery. I am 81, and healthy overall.

I wanted to take a moment to thank everyone for the thoughtful and informative responses to my question about hyperparathyroidism. Your insights, experiences, and advice have been incredibly helpful as I navigate this diagnosis. I truly appreciate the time and care you took to share your knowledge.