) when given to patients with PRIMARY hyperparathyroidism. Sensipar (Cinacalcet) is NOT approved by the FDA for treating patients with primary hyperparathyroidism. If your doctor prescribed this drug for you, you should print this page of parathyroid.com and take it to him/her. Sensipar is likely to make you feel sick, and new evidence suggests that Sensipar can make your osteoporosis worse if you take it.
The short answer is no, she's not correct.
I'm not a healthcare professional but in the course of learning more about my own PPTH I've read quite a few scholarly articles, and I have to say that the decision by your endocrinologist to wait and see because of a negative sestamibi scan seems quite absurd. A scan (be it sestamibi or ultrasound) is *never* used to diagnose primary hyperparathyroidism; it's just to aid the surgeon prior to operation. Your blood tests are unequivocal.
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.
Hi Barb, thanks for the reply. I have already read parathyroid.com - lots of information, but that is obviously a site run by the doctor who makes his living doing the surgeries, so he definitely will not recommend wait and watch. The SEO done here is remarkable - there is more than one site and it pops up in search results everywhere. Other protocols do consider waiting and watching for asymptomatic patients, although most recommend getting the surgery if one is younger than 50 (I am 48).
m so thin my body lacks fat storage space and the doses are simply too high. Another explanation is that I might have primary hyperparathyroidism caused by an adenoma or enlarged parathyroid gland. The doctor thinks it's the more common hyperparathyroidism secondary to d deficiency. But, I'm wondering if any of you have had this experience. Apparently, D supplementation is NOT indicated with primary hyperparathyroidism until after you've had surgery to remove the affected gland(s).
They tell me that the drugs used for secondary hyperparathyroidism are not effective on primary hyperparathyroidism. I do have most of the symptoms of hyperparathyroidism , Very high anxiety issues, depression, bone pain, headaches, heart palpatations, forgetfulness, lack of concentration, low energy, very tired. I am afraid to have them just poke around my chest for these missing glands and yet I don't feel well and am getting worse.
Also remember that calcium AND PTH levels in normal patients are very constant from week to week, measure to measure... while those with primary hyperparathyroidism have calcium and PTH levels that go up and down from day to day, week to week. They are variable.
There is no medical reason to "wait 6 months and get more tests". The patient either has a parathyroid tumor or they do not.
If I took my calcium that morning it would have been elevated. What a lot of BULL CRAP! My calcium was 9.9, it's fine that I suffer a torchured and cruel life as life passes me by, because nobody knows what's wrong with me!
Chances are that because you likely have primary symptomatic hyperparathyroidism, your endocrinologist will suggest you undergo
parathyroidectomy (removal of your parathyroid adenoma/tumor) once everything suspected, is confirmed.
After that most patients are able to function normally, but without all the
annoying unwanted symptoms, lol!
If you want to get many more details on parathyroid issues, including a video of the surgery, visit the parathyroid website.
I wonder if it’s related. Primary sent a TSH level that came back at 0.77 telling me that’s “normal”. I made an appointment with endocrinologist. I don’t want him to tell me that there is nothing he can do for me. I feel like I aged 20 years in the last 2.
The calcium of 9.1 is not typical of primary hyperparathyroidism.
Would remeasure vitamin D as 25-OH-D. And repeat blood calcium levels.
Urine Calcium is a bit high.
Usually primary hyperparathyroidism has calcium >10, but not always and the high urine calcium may be a good clue (although it is not that high in your case).
The sestamibi scan is for patients with primary hyperparathyroidism to help locate the source of the problem - it is not used to make or exclude the diagnosis.
This is suspicious for primary hyperparathyroidism but as a young adult, calcium levels can normally run in the mid 10 range. Therefore a second opinion from an endocrinologist may be warranted.
this is early/mild primary hyperparathyroidism - would see an endocrinologist for complete evaluation to see if surgery vs observation is appropriate.
ve read said this should point to Primary Hyperparathyroidism, but the one value of 21 for the PTH intact scares me. I will note that this blood sample was taken very late in the day, where nearly all others have been done around midday.
Calcium
10.5 on scale of 8.7 to 10.4
10.8 on sclae of 8.7 to 10.4
10.9 on scale of 8.7 to 10.4
11.0 on scale of 8.7 to 10.4
10.6 on scale of 8.7 to 10.4
10.0 on scale of 8.5 to 10.5
10.0 on scale of 8.5 to 10.35
10.1 on scale of 8.7 to 10.
Many endocrinologists do not use them at all as first line tests to look for primary hyperparathyroidism, but instead often use them in complicated cases after surgeries etc.
Until you see the endocrinologist next month, stay well hydrated(drink lots of water) and stop taking any extra calcium supplements or TUMS if you do that regularly. Stay on a normal diet though, and try not to exclude regular calcium sources(this could make things worse if you have hyperparathyroidism).
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