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Primary Hyperparathyroidism
I've just been diagnosed with primary hyperparathyroid disease. My calcuim level was 11.1 and 10.6. when tested again. My 24 hour urine calcuim was 305. My Parathyroid Intact number was 144.6.
I have 2 healthy kids now but would like to get pregnant again soon. My endocrinolist wants to do a wait and see approach with me since I'm only 31 years old and my sestambi scan was negative. She ordered a calcitonin test to test for MEN-2 but the lab never did it when I was there the first 2 times so she said let's just retest you in 6 months. When I asked her about getting pregnant again and what affects it could have on a fetus she kinda just blew me off saying I could have had this disease during both pregnancies before without even knowing it.
Is she correct with this appraoch?
I have 2 healthy kids now but would like to get pregnant again soon. My endocrinolist wants to do a wait and see approach with me since I'm only 31 years old and my sestambi scan was negative. She ordered a calcitonin test to test for MEN-2 but the lab never did it when I was there the first 2 times so she said let's just retest you in 6 months. When I asked her about getting pregnant again and what affects it could have on a fetus she kinda just blew me off saying I could have had this disease during both pregnancies before without even knowing it.
Is she correct with this appraoch?
I'm happy everything will be over soon. I'm hoping to have minimally invasive if possible but if the Dr. chooses not to go that route I'm ok with that too. I go Tuesday for the scan and ultrasound and meet with the Dr. on the 22nd to go over the results and schedule the surgery.
Thanks for your input and support.
Thanks for your input and support.
There are very good parathyroid surgeons at Northwestern and Rush in Chicago. You are lucky your PTH level is high and you have a definative diagnosis.
Good Luck!
Good Luck!
It’s nice to hear back from you.
My sestambi scan come back inconclusive and my dr didn’t redo it, thus rendering my surgery somewhat exploratory in nature.
I can relate to your thoughts about the parathyroid site. Even though I respect the dr and wealth of info there, it would’ve taken a lot for me to go against my own dr (even if I’d read that part on the parathyroid site first). I trusted my dr (…which was no easy task at the time, since I wasn’t feeling so clear-headed and he looks like Doogie Howser).
ChitChatNine (Thank you!) just added a page to the ‘Health Pages’ on hyperparathyroidism. It’s an nih site. When you scroll down to the paragraph on tests before surgery, it says they don’t recommend expensive imaging before surgery. They don’t name what that is but something tells me they mean the sestambi scan. That seems to go directly opposite of the parathyroid site, which seems completely into it.
So I guess each dr is going to have different ideas. Your dr, like mine did, knows your case and is probably making the best decisions for your situation. I’d trust her.
BTW – On the nih site they say they recommend simple imaging tests instead of expensive ones. But they don’t name what those tests are either (?). I’m guessing they mean u/s.
How are you feeling about everything? Are you relieved to have a concrete answer and direction?
My sestambi scan come back inconclusive and my dr didn’t redo it, thus rendering my surgery somewhat exploratory in nature.
I can relate to your thoughts about the parathyroid site. Even though I respect the dr and wealth of info there, it would’ve taken a lot for me to go against my own dr (even if I’d read that part on the parathyroid site first). I trusted my dr (…which was no easy task at the time, since I wasn’t feeling so clear-headed and he looks like Doogie Howser).
ChitChatNine (Thank you!) just added a page to the ‘Health Pages’ on hyperparathyroidism. It’s an nih site. When you scroll down to the paragraph on tests before surgery, it says they don’t recommend expensive imaging before surgery. They don’t name what that is but something tells me they mean the sestambi scan. That seems to go directly opposite of the parathyroid site, which seems completely into it.
So I guess each dr is going to have different ideas. Your dr, like mine did, knows your case and is probably making the best decisions for your situation. I’d trust her.
BTW – On the nih site they say they recommend simple imaging tests instead of expensive ones. But they don’t name what those tests are either (?). I’m guessing they mean u/s.
How are you feeling about everything? Are you relieved to have a concrete answer and direction?
I went and saw that Endocrinolist in Chicago that specializes in parathyroid surgery. She seemed really knowledgable. She recommended surgery but doesn't think the minimally invasive will work for me since my sestambi scan was negative and her office ultrasound didn't show anything.
She's still going to send me for another sestambi scan and a ultrasound through the radiology dept. to see if they can find the adenoma though.
I know parathyroid.com says to run if the surgeon tells you this but I think he pushes that as a way to get more patients to see him.
She's still going to send me for another sestambi scan and a ultrasound through the radiology dept. to see if they can find the adenoma though.
I know parathyroid.com says to run if the surgeon tells you this but I think he pushes that as a way to get more patients to see him.
Glad to hear you're ob acted on this (he sounds like a keeper).
I jumped over to other forum to read the dr's response and one thing he addressed is one I was originally struct by - your age.
My surgery went well because, bottom line, it resolved what was going on with the bad gland - dangerous spikes in calcium and succeeding symptoms that nearly killed me. Things got a little more involved because thyroid issues showed at the same time, so it turned into a double issue. That’s not usual case though. It’s made the recovery more complicated, but things are better than before surgery, or what could be….
Should you need surgery, it’s most important that you find a surgeon specifically trained to do parathyroid surgery.
I recently came across a not too old mag of the top U.S. hospitals. More than one of the top 50 for endocrinology was in the Chicago area. So it seems you're in the right place, for sure. (I tuned into because that’s where my dr went to school for this surgery.)
Here’s a YouTube clip of one women’s surgery experience. Keep in mind though that she had the minimal surgery and as said above, that’s not everyone’s case:
http://www.youtube.com/watch?v=gl8BaKyBQHo
Keep in touch.
I jumped over to other forum to read the dr's response and one thing he addressed is one I was originally struct by - your age.
My surgery went well because, bottom line, it resolved what was going on with the bad gland - dangerous spikes in calcium and succeeding symptoms that nearly killed me. Things got a little more involved because thyroid issues showed at the same time, so it turned into a double issue. That’s not usual case though. It’s made the recovery more complicated, but things are better than before surgery, or what could be….
Should you need surgery, it’s most important that you find a surgeon specifically trained to do parathyroid surgery.
I recently came across a not too old mag of the top U.S. hospitals. More than one of the top 50 for endocrinology was in the Chicago area. So it seems you're in the right place, for sure. (I tuned into because that’s where my dr went to school for this surgery.)
Here’s a YouTube clip of one women’s surgery experience. Keep in mind though that she had the minimal surgery and as said above, that’s not everyone’s case:
http://www.youtube.com/watch?v=gl8BaKyBQHo
Keep in touch.
You're right, I can relate to some the the things you experienced.
I saw my OB today he recommended a Endocrinologist who specializes in hyperparathyroidism at a nearby academic hospital (Northwestern) (I'm in Chicago). I'll see her on June 24th. He recommended not getting pregnant until I find out what exactly what's going on (which is ok with me because I'm busy with our 12 month old and 2 1/2 year old. I also posted on Dr. Lupo's forum and he said to find a good parathyroid surgeon there's no need to "wait and see".
Can I ask what your surgery and recovery was like?
I saw my OB today he recommended a Endocrinologist who specializes in hyperparathyroidism at a nearby academic hospital (Northwestern) (I'm in Chicago). I'll see her on June 24th. He recommended not getting pregnant until I find out what exactly what's going on (which is ok with me because I'm busy with our 12 month old and 2 1/2 year old. I also posted on Dr. Lupo's forum and he said to find a good parathyroid surgeon there's no need to "wait and see".
Can I ask what your surgery and recovery was like?
You are indeed a lucky person!
I think you make some excellent points. I see, as I believe alikat709 does, the website mentioned above as giving pretty good, but not perfect, information on what this disease is all about. Just like everything else on the web, it should only be taken as adjunct information - especially with .com at the end. I would hope that’s implicit, but it’s also why I try to use deflective words like ‘pretty good.’ Ultimately it is and should be our own drs who decide what is the best procedure for each of our cases.
This disease is a tricky one and it seems to unfold differently in different people. Hopefully peaches29 will find the answers she needs for her situation.
Thank you for sharing. I’m so glad there are others out there.
I think you make some excellent points. I see, as I believe alikat709 does, the website mentioned above as giving pretty good, but not perfect, information on what this disease is all about. Just like everything else on the web, it should only be taken as adjunct information - especially with .com at the end. I would hope that’s implicit, but it’s also why I try to use deflective words like ‘pretty good.’ Ultimately it is and should be our own drs who decide what is the best procedure for each of our cases.
This disease is a tricky one and it seems to unfold differently in different people. Hopefully peaches29 will find the answers she needs for her situation.
Thank you for sharing. I’m so glad there are others out there.
Hello! Having put up with increasingly severe symptoms for 4 years prior to my PTA surgery, I can't imagine going through a pregnancy with that going on...Especially with the complications that are common with pregnancy and the renal system...If your calcium runs high constantly, you have a horribly high risk of kidney and gall stones...Imagine THAT while you're pregnant...I had a kidney stone that was stuck for 8 days...My poor kidney nearly ruptured, but I luckily passed the stone (6mm) 2 hours before surgery...From the calcium levels (I hit 12.0 just prior to surgery) I developed high blood pressure (can be fatal while pregnant) as well as frequent palpitations and was very tired and hurt everywhere...Not a good thing at anytime...My advice? Get it taken care of...I did have the mini surgery, but it is not for everyone...Usually with cancer of the thyroid, there are symptoms that go with it as well...rarely are the parathyroid tumors cancerous... Good luck..You'll be shocked how much better you feel when it is out...
I recently discovered that I had hyperparathyroidism. Had the surgery and while they were performing it they noticed a problem with my thyroid, a small nodule and it was papillary carcinoma. A two for one surgery. I'm a lucky person.
Talking with my ENT he stated that the size of my adenoma indicated a possible problem for years. I've had an occasional kidney stone every few years for FIFTEEN years. My calcium levels were never high enough to warrant further blood tests. My life was pretty normal with the disease other than the few kidney stones.
Get a second opinion, get your answers and make an informed decision. Avoid taking every bit of information from this site as fact.
The comment by alikat709 above is disturbing to me for the reason is that in my case the less invasive procedure as touted by the parathyroid.com site would have missed my thyroid nodule that did not show up on any imaging test!
They might have a less invasive procedure but your insurance company will probably not cover the procedure. Question I have is this, if the less invasive procedure is so great then why aren't the other ENT's jumping on the bandwagon? Just my observation.
Good luck to you.
sammyG53
HPT & TT 11/07
Talking with my ENT he stated that the size of my adenoma indicated a possible problem for years. I've had an occasional kidney stone every few years for FIFTEEN years. My calcium levels were never high enough to warrant further blood tests. My life was pretty normal with the disease other than the few kidney stones.
Get a second opinion, get your answers and make an informed decision. Avoid taking every bit of information from this site as fact.
The comment by alikat709 above is disturbing to me for the reason is that in my case the less invasive procedure as touted by the parathyroid.com site would have missed my thyroid nodule that did not show up on any imaging test!
They might have a less invasive procedure but your insurance company will probably not cover the procedure. Question I have is this, if the less invasive procedure is so great then why aren't the other ENT's jumping on the bandwagon? Just my observation.
Good luck to you.
sammyG53
HPT & TT 11/07
I had a lot of symptoms. Interesting that you mention the gallbladder because I also had overlapping issues with that (see my profile).
Do go to the website mentioned above to get a pretty good picture of what this is all about (honestly doubt you'll need a trip to Florida; there are enough competent drs around). Also see, with info and things to click on:
http://www.endocrinesurgery.ucla.edu/
Somes symptoms listed are ones I had, particularly the stomach ones. See if you can relate to any.
IMO - If your primary was concerned enough to send you on to the endo that seems yet another reason to take a further look now at what's going on.
It'll be interesting to see what the OB has to say.
Stay in touch.
Do go to the website mentioned above to get a pretty good picture of what this is all about (honestly doubt you'll need a trip to Florida; there are enough competent drs around). Also see, with info and things to click on:
http://www.endocrinesurgery.ucla.edu/
Somes symptoms listed are ones I had, particularly the stomach ones. See if you can relate to any.
IMO - If your primary was concerned enough to send you on to the endo that seems yet another reason to take a further look now at what's going on.
It'll be interesting to see what the OB has to say.
Stay in touch.
you need to go to parathyroid.com (and you will also need a trip to florida). this website will explain everything you need to know.
Thanks for your input.
No, the first time I saw her was after I went to my primary Dr. with what I thought was gallbladder issues turns out it wasn't anything but my bloodwork came back twice with the 11.1 calcuim so he sent me to her.
I go to my OB Friday for my annual exam so I'll see what he thinks.
Did you have any symtoms?
No, the first time I saw her was after I went to my primary Dr. with what I thought was gallbladder issues turns out it wasn't anything but my bloodwork came back twice with the 11.1 calcuim so he sent me to her.
I go to my OB Friday for my annual exam so I'll see what he thinks.
Did you have any symtoms?
I don't know? Because at least your calcium level went down from the previous test, that’s a good thing. But on the other hand, I know it can fluctuate too if there’s a problem. That’s why she is waiting to see what happens next. But, personally, 6 mths seems like a long wait. Especially since she's already made a diagnosis.
You say, “My endo… .” Are you already seeing the endo for something else? Do you have other issues you’re dealing with (you don’t have to say; just wondering if she’s known your history for a bit)?
Also, I’d think that you expressing a desire to get pregnant would be something she would take into consideration because it does have an effect. Can you see what your OB/GYN says?
(My same scan was negative and yet surgery showed an adenoma.)
Good luck.
You say, “My endo… .” Are you already seeing the endo for something else? Do you have other issues you’re dealing with (you don’t have to say; just wondering if she’s known your history for a bit)?
Also, I’d think that you expressing a desire to get pregnant would be something she would take into consideration because it does have an effect. Can you see what your OB/GYN says?
(My same scan was negative and yet surgery showed an adenoma.)
Good luck.
WELCOME to the COMMUNITY .. I am not too well versed with your ? but wanted to say hello. I am sure others will have some input for you!
Cheryl
Cheryl
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