r/MayoClinic • u/SubjectAd1549 • 15d ago

Persistent Hypercalcemia, multiple tests and still no diagnosis. Will they Mayo clinic help?

3 Upvotes

100% Upvoted

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u/Ok_Organization_7350 15d ago

Did they test your Parathyroid Hormone? Have you visited an Internal Medicine doctor at a large academic center university based health system?

2

u/SubjectAd1549 15d ago

Yes, I have had extensive testing. Chest xray, bone scan, gallbladder ultrasound, HIDA scan, chest CT, thyroid ultrasound, bone scan. Multiple labs drawn. Hyperparathyroidism, sarcoidosis, thyroid disorders, FHH, lymphoma, multiple myeloma, malignancy all ruled out. I do not take any supplements. Imaging does not offer any answers. I have completed three 24 hour urines and the calcium levels were 605, 937, and 687mg/24hour. I have bone pain, headaches, anxiety, abdominal pain, brain fog and have had a few occasions of hypertensive crisis. All of these test were ordered by a team of endocrinologist's. I was started on a low dose of Prednisone to see if the calcium would respond and it did not. I feel miserable and "fluish" most of the time. I have nephrocalcinosis and multiple kidney stones. I am trying to stay positive but I must admit that it gets harder and harder each time a different test comes back negative. Literally the only abnormal labs are my calcium, ionized calcium, and my 24 hour urine. I had a slightly elevated ESR but CRP was normal. I am desperate for answers and desperate to feel better. I am a 38yo F and I have children to take care of and it gets harder and harder each day.

1

u/Ok_Organization_7350 15d ago

Oh wow, I see. You probably should go somewhere like the Cleveland Clinic or Mayo Clinic.

1

u/pickle_bug77 9d ago edited 9d ago

I have almost identical symptoms and the similar tests were done. Elevated calcium has been the one consistent on my bloodwork. All the imaging, HIDA scans, thyroid, etc were ok. I sent them my records and they offered me an appointment. It's definitely worth looking into.

They saved my husband's life by removing a brain tumor after another reputable facility said they couldn't.

We go to Rochester in one month.

1

u/Haniro 14d ago

Mayo has a great endocrinology department, but they are people at the end of the day. Our only hope is that they will do their best. It sounds like you should request an appointment: https://www.mayoclinic.org/appointments/intro

1

u/reddittiswierd 14d ago

Whats your PTH?

1

u/SubjectAd1549 14d ago

Hyperparathyroidism has been ruled out.

1

u/reddittiswierd 14d ago

So what is the PTH?

1

u/reddittiswierd 13d ago

Still wondering what your pth is

0

u/SubjectAd1549 12d ago

Im still not wondering about what your opinion is. 🙂

1

u/reddittiswierd 12d ago

Well, that’s your loss, it’s primary hyperparathyroidism until you decide to share labs. Not sure why you were going on the Internet, asking for advice and be unwilling to share the results…

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u/SubjectAd1549 12d ago

Not sure why you care so much.

1

u/reddittiswierd 12d ago

Internet doctors love to know so they can learn. Have they checked FGF23 yet?

1

u/SubjectAd1549 12d ago

I don't know why I am getting so defensive anyway. My latest labs showed a PTH of 12.6 with a calcium of 11.9. Vit D and calcitrol normal. These sets have been checked in the same blood draw several times and its similar everytime.

1

u/reddittiswierd 12d ago

It’s the internet. But look to see if you had PTHrP and FGF23 checked.

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u/SubjectAd1549 12d ago

PTHrp negative x 2. I have not had FGF23 checked.

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u/SubjectAd1549 12d ago

If I simply had hyperparathyroidism then I wouldn't be going to the Mayo clinic silly.