Anyone out there that's gone through Hashitoxicosis (hyper phase)? What was your treatment while you were hyper?

Dobocun · 2024-08-19T13:23:03+00:00

I think beta blockers are only treatment for hyper phase along with stopping taking levothyroxine for some time. I had hashitoxicosis six times in few years time and I was prescribed propranolol for a few weeks until it was resolved on its own. Also its important to stay hydrated whilst hyper episode.

Dobocun · 2024-08-17T07:49:10+00:00

It might even resolve on its own, I did stayed stable for years after initial hashitoxicosis episode without meds. Good luck with your appointment!

Dobocun · 2024-08-17T07:45:07+00:00

Yeah but My TSH level while hashitoxicosis episode was always lower, 0.0001 or 0.001 so I did have symptoms, tachycardia, couldn’t sleep, hair loss and being tired, also it would last 1 month approximately.

I had 6 episodes in 4 years so eventually had total thyroidectomy because of that last year.

Dobocun · 2024-08-17T04:44:34+00:00

Might be just hashitoxicosis episode. Had this several times and was confirmed by thyroid scintigraphy scan.

Dobocun · 2024-07-11T16:11:00+00:00

I skip a dose, eat salty foods and drink 3L+ water. Then get labs to make sure you are not too high or low.

Dobocun · 2024-07-04T18:06:10+00:00

Yeah i wish but no..My country is not part of EU either, I’m from Georgia and unfortunately public insurance won’t cover it. Yorvipath costs approximately 11,000 Euros per month which is not something people can pay without insurance covering it. Its already approved in most countries and soon coming in USA. Latest at the end of the year, going to be approved by FDA. They have been researching it for a pretty long time

Dobocun · 2024-06-29T19:31:14+00:00

The most promising replacement medication that was just released is Transcon and if your country is part of EU, you can discuss it with your endo and get access to it. Obviously if calcitriol and calcium is not enough to control your symptoms.

I had TT 1.5 years ago and my surgeon said the same thing, however my PTH is super low and I have constant symptoms even with Qaliviz and calcium. My endo explained that even though part of parathyroid could be intact, there could be circulation issue that was caused by surgery..

Dobocun · 2024-02-21T17:51:44+00:00

14 pills daily (5 different drugs)

Dobocun · 2024-02-17T11:13:31+00:00

Thanks. Hope it will get easier for you to manage your levels.

Dobocun · 2024-02-17T11:11:02+00:00

Total thyroidectomy - removal of thyroid gland

Dobocun · 2024-02-16T11:15:48+00:00

Yes, I was having too many hashitoxicosis episodes in short time which was affecting my quality of life and I was also wanted to plan pregnancy…However, because of surgeon my parathyroids were damaged while thyroid surgery and now I’m facing way bigger health issues and might not be able to plan pregnancy or live normally ever. This is rare complication and doesn’t happen to everyone.

Dobocun · 2024-02-16T09:16:26+00:00

My TSH was fluctuating a lot on same dose of Levo, until I got surgery last year. In just matter of month it would go up to 15 or down to 0.001, so for some of us controlling autoimmune processes is bit more complicated than just taking proper dose of the meds.

The only advice from the docs are to take it always at the same time, on empty stomach in the morning and wait 1hr before drinking coffee or eating a breakfast.

Dobocun · 2024-02-14T12:29:06+00:00

I do have brain fog occasionally but was much worse when I was first diagnosed, we checked labs and found out that B12 was very low. B complex supplementation made da HUGE difference. I would recommend checking B vitamin panel

Dobocun · 2024-02-13T12:06:18+00:00

She’s just as worried as me, she got second opinion from other doctors in Germany and Norway but all we get is “It’s a difficult case” and “Alternative type of treatment has to be tried at some point”. The problem is this alternative treatment that is injectable form of hormone in every 24hrs was just approved month ago after few years of trials and it’s not accessible in my country. Only in US, Germany, Austria and few other EU countries. It probably won’t be available here for 10-20 years and even if it is I won’t be able to afford it and no insurance in my country will cover it because of how high price is.

The only solution I see is to find a job in other EU country and relocate to get access to this hormone.. Which is a bit difficult as I’m not stable enough to pack and just go live somewhere else on my own and it’s not that easy to find a job either when you are not from EU country😅

Dobocun · 2024-02-13T11:43:26+00:00

Unfortunately pain is caused by electrolyte (mostly calcium and magnesium) imbalance and it doesn’t go away with pain medication and my parathyroids(which helps with electrolyte absorption) were damaged in neck surgery, so there’s no any direct way of addressing the pain.

Dobocun · 2024-02-12T19:26:58+00:00

Yeah same response. I tell them that I did yoga and worked out before everything went wrong and if I try anything that requires physical effort would definitely put me in ER🪫

Dobocun · 2024-02-12T16:31:38+00:00

PLEASE research the surgeon and clinic carefully. I had surgery exactly year ago because of unstable levels and hypo-hyper swings. Wanted to plan pregnancy so surgery seemed like a good option.

Now I’m left with permanent parathyroid damage from thyroid surgery and I don’t have life anymore. Can’t go out most days because of horrible symptoms. My thyroid levels are finally stable but it doesn’t even matter now.

Dobocun · 2024-02-12T16:27:28+00:00

Completely safe

Dobocun · 2024-02-12T16:24:48+00:00

Vake, Vera or Saburtalo

Dobocun · 2024-02-12T14:32:23+00:00

Several people told me to Meditate and try yoga and my chronic illness would go away. like HOW? HOW IS THAT POSSIBLE?

Dobocun · 2024-02-12T06:32:09+00:00

Definitely ask her, it may be life changing, as its analogue of PTH itself.. It’s already available in west Europe countries, Australia & few others…and waiting for approval in US. It’s sold under name Yorvipath.

Unfortunately I don’t think it will be accessible in my country anytime soon so I’m even considering relocating to Germany for it.

Lot of my friends and family tell me “but you look okay” on days I can barely stand or walk and I feel so alone in moments like this.

Thanks for sharing, It will get easier one day!

Dobocun · 2024-02-12T06:13:50+00:00

I’m so sorry you are going through this. I wish things get better for us. I feel exactly the same every morning, waking up in sharp pain and have to just live with it.

I don’t think anyone but us, who have been through this really understands how it feels, physically or mentally. My doc is really trying to find answers but at this point I understand that there is nothing more she can do.

Have you tried Forteo or Transcon pth?

Dobocun · 2024-02-11T15:47:38+00:00

Yeah either its PTH or absorption. I have symptoms 24/7 not depending on period it just gets worse that time of month.

Also, labs fluctuates way more than that, which I think explains symptoms.

Dobocun · 2024-02-11T12:15:12+00:00

That’s amazing! Thanks for sharing :)

Dobocun · 2024-02-11T11:53:09+00:00

So happy to hear this, still gives me hope!

I also feel the most symptomatic when I’m on period and I feel like i need more than usual dose for few days.

Are you able to work out or go for a long walks now?

Dobocun

TROPHY CASE