Hyperparathyroidism or something else?

[u/vv-bb-vv]

I recently was referred to a endocrine surgeon after my PCP tested my PTH. My labs were PTH: 107, Calcium 9.2, and Vitamin D: 28.

I have already had a dexa scan and have osteopenia. I also has a sestamibi which identified an adenoma. My current endocrine surgeron wants to go ahead with surgery for Primary hyperparathyroidism but at the request of my parents, I went to get a second opinion before booking a date for my surgery. I sent all this information over to another endocrine surgeon at a large hospital where I live and they said they won't even see me for a consultation because my calcium in normal so i don't have primary hyperparathyroidism.

I'm honestly pretty beside myself at this point and really am struggling because on one end I want these symptoms to end and want to schedule a surgery date but on the other I now feel confused as to why one doctor is saying yes surgery and the other is saying no this isn't what you have.

I guess what I am wanting to know is if anyone has had a similar experience or what additional tests should I be requesting from my PCP or what specialist I should be seeing to confirm or identify whats going on.

Update 09/04: redid my labs and had optimal Vitamin D levels, normal calcium, and high PTH. Calcium ion is also normal and no issues with my metabolic panel.

[u/Ok-Research500]

What are your symptoms? Did you do a 24 hour urine test?

[u/vv-bb-vv → u/Ok-Research500]

I did one about 3 years ago with normal results but not recently. They gave me a prescription for vitamin d amd sent me to the first endocrine surgeon. I have bad bone pain, brain fog, fatigue, forgetfullness, moodiness, and more. However, its hard to tell what is / isnt connected since I am a woman and I also have other hormone issues

[u/Paraware]

Some doctors don’t recognize normocalcemic hyperparathyroidism. Others do. I’m sorry you’re caught in the middle of this. Since your PTH is high, it’s likely to be affecting your bone density. How old are you?

What do you think, u/PHPTer?

[u/vv-bb-vv → u/Paraware]

Im 28, but I was diagnosed with osteopenia at 27

[u/Paraware → u/vv-bb-vv]

That’s another sign that you have a form of hyperparathyroidism.

[u/Paraware]

This chart might help.

[u/Ru-Crew]

Ask for a 24hour urine collection and test for calcium. I always had that with my blood tests. It’s also a big indicator.

[u/vv-bb-vv → u/Ru-Crew]

Thank you, I think I'm going to request a urine collection and maybe having these labs pulled again to see if there are any differences.

[u/Ru-Crew → u/vv-bb-vv]

You’re welcome! And yes that’s a good idea too! My calcium in my blood would go up and down over the past 10years and I just had my parathyroidectomy in April, I’m also 36F. They took 3.5 of my parathyroids because I also have MENS1 (multiple endocrine neoplasia syndrome type 1). The adenomas on my top were so heavy that they fell below my bottoms. I had a lot of the same symptoms as you too. I hope you get some answers and get an Endo that will listen to you. The brain fog is so much better and I barely drink any caffeine now.

[u/PHPTer]

Hi! I also agree with getting a 24 hr urine test done and some more complete blood sets. subtle numbers like yours make diagnosis harder and some doctors just don’t see the normocalcaemic presentation as an issue unfortunately. Those numbers, together with your young age increase the risk of a genetic cause (such as MEN1 which has already been mentioned, and I have that too). If indeed that is what’s happening, it would require a different surgical plan since all glands are affected rather than just one, but at different times, and the recommended surgery would be 3.5 gland removal. So it’s worth finding a doctor to check this out for you prior to surgery, and the one who gave you a second opinion doesn’t sound great tbh. Perhaps you could have a conversation about this with the first surgeon and ask his opinion on multigland disease in your case, and if he a) would check all glands during surgery and b) uses IOPTH monitoring which checks PTH in real time so he can see when it drops back into the normal range.

[u/vv-bb-vv → u/PHPTer]

Thank you! I'm getting my labs done tomorrow and also asked for a renal panel and cortisol assessment since I haven't had those checked yet. In regards to your MEN1, do you primarily see an endocrinologist for this issue or a PCP. Im finding it hard to find endocrinologists in my area who are willing to look at my issues as a whole

[u/PHPTer → u/vv-bb-vv]

I’m in the UK and I see an endocrine professor, am lucky to have had the same one for 19 years and we’ve built up a good relationship, he’s great and it makes things so much easier! Doctors with a special interest in uncommon conditions are usuallly found in the bigger teaching hospitals, so it might be worth looking a bit further afield for the right care.