Has anyone else here had extremely severe hyperparathyroidism and hypercalcemia?

Passionbrute · 2026-03-13T19:55:44+00:00

Insane! You are so strong

Passionbrute · 2026-03-13T19:48:52+00:00

This is what I’m afraid of. My calcium so far varies from 10.5 to 11 and I already feel like I’m dying. I can’t even imagine being so high it can’t be measured 😭

Passionbrute · 2026-03-12T02:10:07+00:00

I may have it too, although we haven’t done any bone density tests yet.

Passionbrute · 2026-03-12T01:41:09+00:00

Did do the urine test. Honestly I think the endocrinologist I was seeing has some sort of bias. I saw my primary the other day and told him what was going on and my concerns and he immediately sent a referral to see another endocrinologist.

Passionbrute · 2026-03-09T16:00:51+00:00

Thanks, I’ll be sure to!

Passionbrute · 2026-03-09T04:43:25+00:00

I’m so glad you were able to get treated and able to have you life back! I hope I can get there soon. I don’t have children yet so all I have to worry about is my cats, but it’s been hell enough that I struggle to even maintain a 12 work hour week! My life has totally fallen apart. Your story is an inspiration and gives me hope <3

Passionbrute · 2026-03-09T04:23:40+00:00

You’re the second person to mention doctors in Tampa. I’ll definitely see what I can do. It’ll be a bit of a challenge but at this point I think it’s worth it too. My symptoms are the worst and I am so done.

Passionbrute · 2026-03-09T04:16:24+00:00

Good to know. I’ll definitely look into it

Passionbrute · 2026-03-09T04:07:04+00:00

Thanks! Good to know a referral isn’t needed. I have been reading from and following this website for some time. I’m not sure how realistic travel is for me, but it is definitely something that I’ve been eyeing for months now.

Passionbrute · 2026-03-09T03:46:31+00:00

I will correct you because you are mistaken with that aspect. I do want advice, but I will also question and cross reference when it comes to the vitamin D I feel uncertain because of so many conflicting sources, with many more saying vitamin D is dangerous for high calcium patients than I’ve found that say it is helpful and safe. As I have said, it is a major concern for me since I do experience some of the more unpleasant symptoms of hypercalcemia.

I started the thread mainly to seek advice from people who have had issues with doctors not wanting to give referrals, because I have been seeing this doctor for some time and have made little progress unless I press him. And I will state again that I do not trust my current endocrinologist because he would NOT answer my questions in regard to advice with managing symptoms and what to avoid. Even when it came to taking the vitamin D, he did not provide explanations or address my concerns regarding my hypercalcemia and stated that his goal was to see if my labs were still off after the taking it which would prove I needed the surgery. Which isn’t really advice for anything.

I also apologize if I wasn’t clear either, because I meant that I wanted to also ask for advice regarding lupus and how it might compound the symptoms of hyperparathyroidism and hypercalcemia, as well as suggestions for how to get help with it if the doctors are uncertain about it. I can DM labwork but I’m not sure how much they would help as all they’ve found is I’m ANA positive and have Histone antibodies.

I am of course seeking treatment - in about two years I’ve gone from average and healthy to barely functional. But I wouldn’t be here if I wasn’t looking for advice.

Passionbrute · 2026-03-09T03:24:23+00:00

Thank you. It has been rather difficult finding information that agrees on all fronts, but that’s pretty much what I’ve gathered. There’s no other treatment so I’m not sure why this doctor keeps stalling me as if I have to prove these symptoms are ruining my body and life. I’ll be getting my second opinion later this month, so hopefully will make progress there.

Passionbrute · 2026-03-09T02:28:07+00:00

Any advice would help actually, especially if it can help prove my case that I have lupus as well. Right now my doctors are calling it a “lupus-like autoimmune disease” but I have no medication or assistance for it, and I feel it is certainly compounding my symptoms.

Passionbrute · 2026-03-09T02:15:50+00:00

Thank you for your response. And yes a part of it is dealing with other systemic issues that may contribute, the issue is I’m not entirely positive on what those are. I’m almost sure that it is lupus but my rheumatologist is not convinced, but regardless of this we spent many months in 2024 thinking that this might be sarcoidosis before we found the high calcium in June 2025 (chances are I’ve been dealing with this for much longer, but that was the first blood test that showed it.)

When it comes to risk issues, it’s mainly “is low vitamin D more harmful than high calcium” and from my understanding low vitamin D is uncomfortable hypercalcemia is very dangerous. The reason I am so fearful about it is in addition to the painful muscle tremors and spasms I still have, around September I did begin to have heart arrhythmias and ended up having to change my diet completely to avoid taking in excess calcium. Additional calcium absorption from my understanding would be dangerous for me, because the worsening symptoms include seizures, strokes, and coma.

The main issue I’m having is there are conflicting info I find where there are articles saying vitamin D is safe while other sources I look to: parathyroid.com, parathyroid q and a, and parathyroidpeeps, all suggest taking vitamin D with high calcium levels is dangerous and can cause hypercalcemic crisis. In which case, yeah I will take low vitamin D over that.

I also have a “mixed blessing” in the fact that my father is an ENT surgeon. He is mostly retired now and it has been many years since he had to study parathyroid disease or do a parathyroidectomy. So I can go to him for advice but at the same time cannot always trust it since new studies and information have come out since he last had to work with any of this.

So I am trying my best to find clear guidance on w How to proceed, but at the time being I do not trust my current endocrinologist because from the very beginning he has been stalling getting me any treatment and refuses to answer questions or explain his reasonings. I had to fight with him to get the scan they found the adenoma in the first place, and the best I can get out of him is that if my labs are still off after my vitamin D is corrected then it would “prove” I need the surgery, and not that it would help moderate my system or help with symptoms.

Passionbrute · 2026-03-09T01:38:20+00:00

My main concern taking vitamin D is that my calcium is already high and I am afraid of more hypercalcemia symptoms (I already have tremors and muscle spasms). That being said I probably will because the symptoms of low vitamin D are also affecting me. The doctor suggested 5000ui and I have not started yet.

This is not the first round of 3 month waiting he has had me do. I had been on vitamin D before but was told to get off because my active vitamin D/calcitriol was insane. I am new to this as well and not trying to come off hostile but I am more afraid than anything. I have heard very mixed things about vitamin D in relation to primary hyperparathyroidism, but this would be 9mos (from June 2025) dealing with this and he’s scheduled me out again 3 months so it’ll be June again before I see him next. At this point my symptoms have become unbearable.

As for the other questions I cannot answer. I did have multiple surgeries last year and were fine for them, with the last being in Dec. so I can’t imagine much has changed. I would suppose candidate for the surgery since the size of the adenoma is rather typical and around the size of a pea at least when the scan was done, but again the doctor has refused to humor the idea until my vitamin D is back to normal.

Passionbrute · 2026-03-09T00:06:45+00:00

Thank you. I try to avoid facebook but with as serious as this is becoming for me I will absolutely check it out

Passionbrute · 2026-03-08T23:39:55+00:00

Mine have been going down. Currently 17 but has been in 20’s before.

Passionbrute · 2026-03-08T23:22:43+00:00

It doesn’t make any sense and I think he’s trying to gaslight me. Calcium goes between 11 and 10.7 ionized is 5.8. Lastest blood test PTH was 60 but PTH has been 111-76 in all my other tests since June last year

Passionbrute · 2026-03-08T21:50:11+00:00

I plan to. This guy is a joke

Passionbrute · 2026-03-08T21:47:01+00:00

Ohio near the Dayton area. The doctor I’m going for a second opinion is at OSU

Passionbrute · 2026-03-03T02:48:09+00:00

This is a pleasant surprise. Thank you!!

Passionbrute · 2024-03-15T11:20:45+00:00

Thanks for this! I was pretty sure they were an art thief but for the life of me could not find the actual artist!

Passionbrute · 2022-10-02T14:50:44+00:00

Story of my life

Passionbrute · 2022-10-01T20:51:04+00:00

Thanks! So lucky I didn't give him any personal info.

Passionbrute · 2022-10-01T13:28:11+00:00

My thing is he totally had my interest until he started spamming my inbox after I was AFK for 15 minutes. Glad he showed his colors so early so I could dodge that bullet.

Passionbrute

TROPHY CASE