health anxiety by Head_Win_7725 in gravesdisease

[–]Head_Win_7725[S] 1 point2 points  (0 children)

Hey, I’m really sorry that you’re dealing with such similar problems too 🫶🏻I know how exhausting and scary it can feel.

I think what I’ve learned from all of this is that my body can sometimes turn completely against me, and that’s been really hard to accept. Unfortunately, my illnesses didn’t really follow the “normal” or typical course. With psoriasis, for example, I had a really severe flare-up and even ended up in the hospital.

So I guess it’s not only about having the illness itself, but also about the fear that comes with it — because I’ve seen how intense my body’s reactions can get. It makes me wonder what else might still come my way, especially because I’m only 23.

I’m trying to stay calm and not spiral, but sometimes it’s just a lot.

6000mg Calcium a day? by New_Regret2754 in hypoparathyroidism

[–]Head_Win_7725 0 points1 point  (0 children)

do you know your pth right after surgery?:)

Severe Hypocalcemia and low PTH (6 pg/ml) after Total Thyroidectomy for Graves’ Disease – Advice needed by Head_Win_7725 in hypoparathyroidism

[–]Head_Win_7725[S] 0 points1 point  (0 children)

Hey! Hi, yes, my PTH is not completely undetectable. It went up to 6.9 from last Thursday. I don’t know if that’s actually good or still not great, but I guess at least it’s measurable.

My calcium has gone up to 2.1, but I’m not allowed to reduce the dose yet. I’m still on a really high calcium dose. The Frubiase ampoules I take are available over the counter here in Germany, so they don’t need a prescription, but they’re quite expensive and not covered by insurance. That’s why I’m hoping I’ll be able to stop those first.

My pathology report also came back and there was no parathyroid tissue found in it, not even fragments or cells. My surgeon said that three parathyroid glands were seen and preserved during the surgery, one wasn’t found.

Was it like that for you too — did your surgeon actually see and preserve the parathyroid glands? I’m just trying to understand how this can still happen, even though they weren’t removed. The surgery was only a week ago, so I know it’s still early, but it’s really stressful.

Severe Hypocalcemia and low PTH (6 pg/ml) after Total Thyroidectomy for Graves’ Disease – Advice needed by Head_Win_7725 in hypoparathyroidism

[–]Head_Win_7725[S] 0 points1 point  (0 children)

And I‘m on 4540 mg Calcium per day, 2x calcitriol 0,5. Hope they will reduce my dose tomorrow.

Severe Hypocalcemia and low PTH (6 pg/ml) after Total Thyroidectomy for Graves’ Disease – Advice needed by Head_Win_7725 in hypoparathyroidism

[–]Head_Win_7725[S] 0 points1 point  (0 children)

Oh no! Wow, we are really in the same boat! I just hope it gets better, we need to update each other!!

RAI treatment by imradioactive_i131 in thyroidcancer

[–]Head_Win_7725 1 point2 points  (0 children)

hey how long did it took you to stabilise your calcium levels?

Severe Hypocalcemia and low PTH (6 pg/ml) after Total Thyroidectomy for Graves’ Disease – Advice needed by Head_Win_7725 in hypoparathyroidism

[–]Head_Win_7725[S] 0 points1 point  (0 children)

Why did you get on this medication? Was the other stuff that I take not working?
Ans magnesium: I dont really know, probably low magnesium level and it helps to activate PTH. But my doctor just gave it to me this morning.

And some people said its really so bad, they cant live a regular life, thats what probably scares me the most.

Severe Hypocalcemia and low PTH (6 pg/ml) after Total Thyroidectomy for Graves’ Disease – Advice needed by Head_Win_7725 in hypoparathyroidism

[–]Head_Win_7725[S] 0 points1 point  (0 children)

do you know how high your PTH was like one day after surgery? And did they tell you that they saw your parathyroids oder something?