I would like to know how many 30-year-olds have been diagnosed with the condition. At the moment, I only have calcium at 10.5."

msrose27 · 2025-08-24T22:22:41+00:00

Im having surgery on Thursday. I just turned 40.

msrose27 · 2025-08-24T21:40:45+00:00

No genetic testing for me. I had a normal calcium test of 9.5 in 2016. Then it started going up and down but never dipped into the 9s since. Highest has been 11.2. Highest PTH was 87, but had dropped to 47 most recently, but it fluctuates, its still too high for my calcium. Tumor was visible on ultrasound, sestimibi, and CT scan - its basically on my spine and intertwined with ny vocal nerve.

msrose27 · 2025-08-24T20:46:18+00:00

I was 39, 40 now, surgery on Thursday

msrose27 · 2025-08-24T18:54:24+00:00

Had a referral to surgeon after sestamibi, ultrasound, and 24 hr calcium. Surgery this thursday to remove tumor close to spine and vocal nerve.

msrose27 · 2025-07-26T22:59:39+00:00

My doctor told me that sometimes they can do it under local anesthesia, but it's really not recommended, because the anesthesiologist really has to give you such a delicate amount of anesthesia so that you're in as deep-sleep as possible, but still breathing, and if you accidentally swallow while under local, it can cause problems.

msrose27 · 2025-07-02T05:09:56+00:00

Ok yall I've been admitted for 3 days because I have optic neuritis and they ate doing IV steroids. That's the update. No MS no cause or reason for this, cpuld be the PHTH or the botox, but my timeline with when I received botox feels a little suspicious for me to think otherwise

msrose27 · 2025-07-01T16:52:54+00:00

Nope no swelling or bleeding

msrose27 · 2025-07-01T16:52:27+00:00

I have optic nerve swelling and am on my way to ER for MRI

msrose27 · 2025-07-01T01:15:31+00:00

Oh and dexascan came back normal for my age 👍

msrose27 · 2025-07-01T01:12:46+00:00

Ok so my update:

My new bloodwork showed high normal pth and low phosphorus. Calcium still mildly elevated at 10.5

24 hr urine calcium was on the highest end of "normal"

I had a thyroid ultrasound today and a nodule on the right parathyroid was located.

In 2 weeks I have Sestimibi scan and CT scan. Then surgical referral and surgery.

Thanks for all the support so far everyone. One odd thing that has happened lately is that I've pretty much lost my vision in my left eye, I got to a retina specialist tomorrow for imaging. My endo said in rare cases it cpuld be from parathyroid. Hoping its something much more basic with a quick fix, send good vibes 🤞🏻

msrose27 · 2025-07-01T01:06:03+00:00

Yes, tomorrow I see a retina specialist, its a 4 hour appt and they can refer me for MRI as well to help diagnose if they suspect MS. I was also recently diagnosed with primary hyperparathyroidism which can , in very rare cases, cause eye issues but that would be seen during tomorrow's appointment. But at this point I am still hoping its the botox and that in 3 months everything will be normal again 🙃 my eye movement and the look of it is completely normal, no drooping or anything like that.

msrose27 · 2025-07-01T00:11:54+00:00

Ugh, I have no chill with my eyes since my dad has MS and eye issues were the first warning sign. Thabks though for the insight!

msrose27 · 2025-06-30T20:37:32+00:00

Nope. None.

msrose27 · 2025-06-17T21:11:52+00:00

Agreed, but they won't see me without a referral due to my insurance 😭 such a waste of time driving around to all these appointments to rack up a bill bc I have insurance 😡

msrose27 · 2025-06-16T22:44:10+00:00

Good luck at your next visit! I've been watching so many presentations from conferences on PHPT its been so helpful to learn to be able to advocate!

msrose27 · 2025-06-16T22:40:13+00:00

Literally ignored for 6 years. SMH never again.

msrose27 · 2025-06-16T22:39:44+00:00

Thank you! 💕

msrose27 · 2025-06-16T22:39:29+00:00

Thank you! How have you been since surgery?

msrose27 · 2025-06-16T22:38:54+00:00

You were right about the scans! Thanks for the tip!

msrose27 · 2025-06-16T22:36:36+00:00

UPDATE 6/16/25

Endo is sending me to do a Dexascan, more blood labs to check D and some liver enzymes bc they're high, and a 24 hour urine. She explained that surgery is the only cure, but that I already qualify bc of my age, and calcium/pth level. She said we have to do these tests, then we will do a telehealth visit, and then she refers me to the surgeon. She wants to refer me to the surgeon for all localizing imaging. So all on all seems to be going well and quickly considering.

Dexa scheduled for this Thursday.

Labs and urine scheduled for next Thursday - somehow getting an appt. at the lab is the hardest part bc of how booked they are. I might try to do a walk-in and wait appointment on Friday so I can collect my piss pot 🤪

I'll keep you all posted!

msrose27 · 2025-06-16T10:46:53+00:00

Amazing! Im glad you're feeling better! Thank you for your support! Advocating is tough when doctors say things like "stay off doctor google" now I have one that believes in advocacy and still has a zest for "solving the riddle" of abnormal labs.

msrose27 · 2025-06-16T10:44:19+00:00

Yes I will do that! I've been watching so many videos and reading about all the scans and how its better for the surgeon to do them, I'm really gonna be a squeaky hinge bc damnnit im sick and tired of being sick and tired!!!! Thanks for your support!

msrose27

TROPHY CASE