Truely if this is a parathyroid related issue - many report surgery is almost an instant reli.ef in symptoms.
You do show high calcium levels and the PTH sounds odd too
I know this is an older post and perhaps you have found the answer to your question. But just in case, I was diagnosed (and still have) with mild hyperpara. It seems the criteria for surgery for mild hyperpara have to do primarily with bone density concerns and kidney stones. If these are present, then the docs seem more inclined to act. A bone scan and any problems related to kidney/bladder infections or stones may prompt the next step, which is to look for a possible adenoma or enlarged gland. Actually, this can be done without the known presence of either of these symptoms, based on your numbers which are 'inappropriately' high, as they say. Endocrine.com talks about how poorly people can feel with a calcium level of 11. If there is a gland that shows up in a sestambi scan, then you know it will not get better. Hope this is helpful or that you have already resolved your questions!
For all hyperparathyroid patients...I cannot say it enough, the calcium level and the PTH should NEVER both be elevated at the same time. EVER. This is caused by only a few things -a parathyroid tumor (95% noncancerous) especially. Excess calcium is usually urinated off, but when the PTH goes into overdrive and doesn't scale back in response to the rising calcium level, the calcium cannot be excreted fast enough and it builds up, creating all kinds of horrible symptoms -and if it gets high enough it can cause your blood pressure to spike, causing a stroke, or a super-high heart rate, causing a heart attack. Also, the PTH rips calcium from your bones when its demand for calcium outstrips your dietary intake.
So, although this disease can take a few years to get bad, the only fix for HPT from a tumor is to get it removed....~MM
MM, I agree with you; I don't think the medical community really knows the full implications of this 'mild' imbalance.
I'm not sure they understand all of the symptoms and consequent impacts on quality of life for those living with it...they are relying on hard and fast numbers or certain symptoms as a mandatory threshold for action.
MD Anderson Houston, where I've gone for treatment, has said they are in an ongoing debate and discussion about how to deal with those of us who fall into the 'mild' category. I can understand that if someone possibly has hyperplasia and the only relief is going to be to remove 3 3/4 of the glands, that this raises the possibility of complications and hypoparathyroidism and they seem to weigh those against the lack of current 'serious' symptoms.
But, if it is clearly a single adenoma, that would seem straightforward.
My "mild" imbalance was "let go" for four years before I found out about it by chance. By that time I was told I was in perimenopause (I wasn't), it looked as if I were developing diabetes (I didn't), and that I was fatigued, depressed, and constipated because I wasn't eating enough fiber or getting enough exercise (I was). I'd also had 6 kidney stones in two years (#7 got stuck an put me in the hospital) along with multiple urinary tract infections from the buggers. My heart rate was often irregular and racing, and my blood pressure was climbing (I was only 42 yrs old and not overweight). I was also become sleep-deprived (explains the depression) because of having to urinate every 30-45 mins 24/7. Now I'm left wondering if any permanent damage was done to my body...
So, my reaction to those who say "mild"? -Puh. If they were in my shoes, wouldn't they have wanted it fixed before it did something bad to them? ~MM
Just for the record..If you have elevated PTH and calcium, you probably have a parathyroid tumor. A Sestamibi scan (if it is done accurately) will show it. Mine looked like a lightbulb and it was the size of a medium chicken egg by the time they took it out. (By the way, an hour after surgery I could already feel the difference.) anyhow, if you live near Washington state, I can suggest a good surgeon...:) ~MM
The doc I've seen at MD Anderson would not have considered your case mild. With the symptoms you've described, especially the stones, you would have had a scan first thing and then surgery. I have to give them credit for being in the middle of the debate about treatment and they do seem to have a 'lower' threshold for what triggers surgery. My symptoms and numbers aren't where yours were, (PTH 84 and Cal 9.9), this time around they are just 'inappropriately high' and I only have the 'groans, moans and fatigue'- no stones. The first round of this, they were worse and they found a small adenoma and removed the one gland.
It seems a lot of people suffer needlessly with this, get diagnosed with other things (especially female problems!) and I have had the same thought- I wonder what the criteria setters would do if they were living with the symptoms!