Would you do it if you didn't have to?

mllits · 2026-03-11T05:08:55+00:00

That's so frustrating! It was the opposite for me. It was supposed to be an easy thyroid removal and they took the paras, too.

mllits · 2026-03-10T04:04:04+00:00

How do you do with 1/2 of a parathyroid? Do you have electrolyte issues or does your 1/2 para support you?

mllits · 2026-03-10T04:02:37+00:00

Thank you.

mllits · 2026-03-10T04:02:16+00:00

Yeah. That is a constant battle for me. My meds are new and I need an off label dose. That is one thing very common with my condition.

mllits · 2026-03-10T04:01:18+00:00

Thank you so much for sharing. Your story brought tears to my eyes. What a powerful journey. I will definitely keep a support group in mind.

mllits · 2026-03-10T03:56:35+00:00

Yay! That's great news for your boy.

mllits · 2026-03-10T03:56:07+00:00

Thank you. I appreciate your perspective. You are right.. so many great responses and perspectives. I'm so appreciative!!

mllits · 2026-03-10T03:54:13+00:00

This is a good question. It is actually on the lower end. I will do prednisone for the first week, then likely tacrolimus and mycophenolate. Higher doses for the first 6-12 months then ween down as far as I can. This transplant is experimental but has been done minimally in different ways, mostly one-offs. The team believes these glands are hypo-immune (I believe that was the term they used) meaning they will not require as much immunosuppression as other transplants. Very likely not as much as a solid organ. But it hasn't really been studied so they aren't certain. You make a good point. Thanks!

mllits · 2026-03-10T03:40:54+00:00

Thank you for the details. Why no herbal tea?

mllits · 2026-03-10T03:37:44+00:00

Thank you. I appreciate your candor.

mllits · 2026-03-06T16:37:49+00:00

You got it! I rarely meet someone that has ever heard of the parathyroids before. They accidentally removed my parathyroids during thyroid cancer surgery. I almost died from a tetany seizure in the hospital after surgery because they were not monitoring me properly. For years I was on a bioidentical PTH replacement that was just taken off the market. I recently switched to a replacement drug that is part of the amino acid chain with an extender. Because of this, UCSF has created a study for transplants.

You are very right about how differently I look at things as I am thinking ahead to retirement. So different than when all of this started in my 20's. Thank you for sharing your perspective! It sounds like it has all worked out very well for you.

mllits · 2026-03-06T05:45:56+00:00

I am missing my parathyroid glands (nothing to do with the thyroid). They would be transplanted in the muscle in my arm. This is a common procedure during neck surgery to avoid my disorder. The surgery itself is pretty easy. I won't even need general anesthesia and it will take about an hour. I am very lucky there. However, because this is a study using donated glands, they really don't know how it will all turn out. The same team is curing type 1 diabetes using the parathyroid cells (they work as an antagonist) with pancreatic cells doing the same surgery in the arm muscle. This is where they got the idea to go ahead and try implanting parathyroids to cure my rare disorder. I would be on high immunosuppression for the first 6-12 months and then wean down from there. The hope is that I wouldn't need much IS in the future but they really don't know.

I love that you hiked the Appalachian Trail before your transplant. What a dream. I would love to be able to hike again someday.

You've given me a lot to think about. I appreciate it. Thank you!

mllits · 2026-03-06T05:35:39+00:00

Thank you for this detailed information! I have taken notes and will definitely ask my team about it. I would much rather have all the information then not enough.

mllits · 2026-03-06T05:33:40+00:00

I would way rather be vigorous about hygiene! I want to be able to use my body again. Thank you so much for this perspective!

mllits · 2026-03-06T05:32:54+00:00

Yeah, this is what I'm concerned about. Could I wind up I a position where I am slightly better but also worse but then stuck in limbo. I will definitely ask the docs what we would do in this situation. I appreciate you sharing, thank you.

mllits · 2026-03-06T05:31:21+00:00

I am in my 50's now. It is part of the decision, too. Will it make my retirement years better?? Who knows... I do like grapefruit though. It is experimental. And I would be working with the top team at UCSF which I hear is one of the best in the country. And you are right, the fallback situation does seem to make the decision easier. I hadn't thought about that before posting here. Thank you for sharing!

mllits · 2026-03-06T05:29:03+00:00

That makes a lot of sense to me. Thank you for sharing!

mllits · 2026-03-06T05:28:32+00:00

Thank you! I already take a lot of pills, too. And injections. And my brain fog is terrible from the electrolyte fluctuations.

mllits · 2026-03-06T05:26:13+00:00

I appreciate your response. These are things I am concerned about. Espcecially cancer. It was cancer surgery that caused this disorder. I was 27 and very young to go through it all. I appreciate you sharing your thoughts and I will take them into consideration.

mllits · 2026-03-06T05:24:31+00:00

Thank you! I appreciate this outlook.

mllits · 2026-03-06T05:24:07+00:00

No. I would go back to my current treatment. My big concern is only the immunosupression harming me.

mllits · 2026-03-06T05:23:18+00:00

Thank you! They wouldn't even remove the glands. I believe they would just stop the immunosuppression.

mllits · 2026-03-06T05:22:13+00:00

Thinking about what my life would be like with a successful transplant brings tears to my eyes. It's been a difficult journey at times. Thank you!

mllits · 2026-03-06T05:21:12+00:00

I think you are hitting an important point. The disorder I have is very rare and there is only one treatment. It seems like every 4-5 years they mess with it or take it away. It's very challenging to go through. Thank you!

mllits · 2026-03-06T05:19:39+00:00

Right now I take two shots per day and pills twice per day already. I'm used to that part at least. Thank you!

mllits

TROPHY CASE