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Primary Hyperparathyroidism
Male, 65: My cardiologist has sent me back to my internist twice for elevated calcium levels, 10.8 and 11. Twice the internist found high-normal calcium, 10.6 and 10.3, and elevated PTH, 96 and 82, but has not pursued it further. There is a very little osteopenia, high blood pressure, frequent urination (exams showed no reason to suspect prostate problems). I have decided to go to a group of local endocrinologists who concentrate on diabetes but some have an interest in PHPT. I trust my internist but want additional input. Columbia Medical in NYC and its experts is not that far away but I would rather stay local. We have a lot of great doctors in north New Jersey.
Am I making a mistake? Should I try to go to the specialists at Columbia? I have atrial fibrillation and wonder if it's caused by the PHPT. I don't want a parathyroidectomy or any operation unless it's absolutely necessary and will help with the atrial fibrillation. Symptoms come and go. They are at times very strong, and other times I am fine. At times I can urinate every 30 minutes, or have an irregular heart beat for many hours. Any suggestions appreciated.
Am I making a mistake? Should I try to go to the specialists at Columbia? I have atrial fibrillation and wonder if it's caused by the PHPT. I don't want a parathyroidectomy or any operation unless it's absolutely necessary and will help with the atrial fibrillation. Symptoms come and go. They are at times very strong, and other times I am fine. At times I can urinate every 30 minutes, or have an irregular heart beat for many hours. Any suggestions appreciated.
P.S. By the way, since you have 4 parathyroid glands, if one is removed, the others step up and make up for the removed one...You'll find, post surgery, that you'll need to take calcium supplements to replenish the stores in your bone the excess PTH took away...Calcium affects how EVERYTHING in your body works. Too much puts things into "overdrive"...That's why you urinate every 30 mins...Your regulatory systems are trying, in vain, to lower the Ca levels, but just can't do it fast enough...Keep hydrated. Stuff with electrolytes is really good because the calcium binds to it and is flushed out easier...Hang in there...And don't be afraid to be a "squeaky wheel"...The Drs don't know whats changing in you unless you say something...(((((((((((((((HUGZ))))))))) ~MM
I too had the hyperparathyroid adenoma "experience"...I had just about all the symptoms (headaches, fatigue, urinating EVERY 30 mins, multiple kidney stones, heartburn (gawd!), hips and back aching, sleep troubles, b*tchy, hormonal problems, etc, etc...). Toward the end, when the calcium levels were really getting up there (11.8-12.4) my heart rate was doing some pretty crazy things and I kept having these muscle twitches that were driving me nuts!
I had a good sestamibi scan and uncomplicated surgery. It took about 30 mins and I went home that night...By the next morning, I could feel the difference...The bone aches, heartburn and head aches were gone...It took a few months for my body to adjust to the lowered calcium levels, but 1 1/2 yrs later, I feel GREAT! No more kidney stones! No more gut issues! Lots of energy, no heart rhythm problems, and no aches. It was WAAAYYY worth it. If you have a parathyroid tumor, get it out. The problem only worsens with time, and it sounds like you may have had this thing a long time...
~MM
I had a good sestamibi scan and uncomplicated surgery. It took about 30 mins and I went home that night...By the next morning, I could feel the difference...The bone aches, heartburn and head aches were gone...It took a few months for my body to adjust to the lowered calcium levels, but 1 1/2 yrs later, I feel GREAT! No more kidney stones! No more gut issues! Lots of energy, no heart rhythm problems, and no aches. It was WAAAYYY worth it. If you have a parathyroid tumor, get it out. The problem only worsens with time, and it sounds like you may have had this thing a long time...
~MM
I’m glad to hear you’ve had things move along. The tests you describe are the same ones I had. I think the one for the thyroid is pretty routine.
Hopefully, the next scan at the other facility will yield better results. My dr didn’t go for a second one when the first didn’t show anything, but I think it’s a good idea to attempt another look.
The thought of surgery isn’t too pleasant. But if it resolves everything – it’s worth it. That’s great that your research of surgeons was in sync with what the dr had in mind.
Keep me posted on your progress. I look forward to hearing about the next steps. I think we’re all in the ‘learning the system' club, aren’t we?
Hopefully, the next scan at the other facility will yield better results. My dr didn’t go for a second one when the first didn’t show anything, but I think it’s a good idea to attempt another look.
The thought of surgery isn’t too pleasant. But if it resolves everything – it’s worth it. That’s great that your research of surgeons was in sync with what the dr had in mind.
Keep me posted on your progress. I look forward to hearing about the next steps. I think we’re all in the ‘learning the system' club, aren’t we?
Hi,
The endo's office pushed up the app't to this past week. He immediately did an ultrasound which showed a dark area that is consistent with an enlarged parathyroid There is blood flow and a triangular shape so not a cyst or nodule. He ordered a 25 hour urine, and an ultrasound to check for kidney stones (both already done), also a blood test for D vitamin and for the thyroid. I don't why he is checking the thyroid. He is going to order another sestamibi but at a different hospital. He didn't say so but my guess is that they do more of these scans and there might be a better technique and a more precise outcome.
We discussed the possibility of surgery. I guess it depends on the outcome of the kidney ultrasound. But he said that I could still have the surgery if I wanted it. That's an uncomfortable position to be in.
I had already researched three surgeons and he recommended the same surgeons that I had in mind, and in fact had just sent one of his patients to one of these. It feels good to be on the same page with your doctor, know what is going on and know that you have some control. I come from an era where you almost never went to the doctor, only if you were very sick, and so I am just learning the system.
My next app't is at the end of September.
The endo's office pushed up the app't to this past week. He immediately did an ultrasound which showed a dark area that is consistent with an enlarged parathyroid There is blood flow and a triangular shape so not a cyst or nodule. He ordered a 25 hour urine, and an ultrasound to check for kidney stones (both already done), also a blood test for D vitamin and for the thyroid. I don't why he is checking the thyroid. He is going to order another sestamibi but at a different hospital. He didn't say so but my guess is that they do more of these scans and there might be a better technique and a more precise outcome.
We discussed the possibility of surgery. I guess it depends on the outcome of the kidney ultrasound. But he said that I could still have the surgery if I wanted it. That's an uncomfortable position to be in.
I had already researched three surgeons and he recommended the same surgeons that I had in mind, and in fact had just sent one of his patients to one of these. It feels good to be on the same page with your doctor, know what is going on and know that you have some control. I come from an era where you almost never went to the doctor, only if you were very sick, and so I am just learning the system.
My next app't is at the end of September.
My sestamibi scan was negative too...and I ended up having a tumor on one parathyroid gland.
Hopefully the appt date will get here soon. I look forward to hearing what they have to say.
Take care and keep in touch.
Hopefully the appt date will get here soon. I look forward to hearing what they have to say.
Take care and keep in touch.
Thanks for the support and the confirmation. I was thinking that maybe I was making too big a deal of it.
These are clinical endocrinologists. They do their own testing and ultrasound. I figure I might get a better test result there. My sestamibi was negative but it was done at a small hospital that probably does very few of them and I've read that false negatives are common.
My appointment is not until Sept. 8. I'll see what happens.
These are clinical endocrinologists. They do their own testing and ultrasound. I figure I might get a better test result there. My sestamibi was negative but it was done at a small hospital that probably does very few of them and I've read that false negatives are common.
My appointment is not until Sept. 8. I'll see what happens.
Welcome. I’m sorry you’re having symptoms like this, I know how difficult they can be to deal with.
Personally, at this point I would do the same as what you have in mind and start by going to your more local doctors. Then if you should need further opinions at least you know you have a really good option to turn to. On the other hand, someone from the city might have a more exact take on on that one.
Actually, it seems like pretty much every group of endocrinologists mostly focuses on other illnesses, but since this one is not all that common – it’s understandable.
It sounds like your situation definitely needs some further investigating.
Don’t worry, they won’t attempt the surgery unless it’s absolutely necessary. While I wasn’t thrilled about the idea of that either, it does relieve symptoms enough to make it worth it.
Please know that I and several other members who’ve dealt with this are here for you as you go through this whole thing.
Keep us posted.
Personally, at this point I would do the same as what you have in mind and start by going to your more local doctors. Then if you should need further opinions at least you know you have a really good option to turn to. On the other hand, someone from the city might have a more exact take on on that one.
Actually, it seems like pretty much every group of endocrinologists mostly focuses on other illnesses, but since this one is not all that common – it’s understandable.
It sounds like your situation definitely needs some further investigating.
Don’t worry, they won’t attempt the surgery unless it’s absolutely necessary. While I wasn’t thrilled about the idea of that either, it does relieve symptoms enough to make it worth it.
Please know that I and several other members who’ve dealt with this are here for you as you go through this whole thing.
Keep us posted.
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