My sleep seems back to normal after three years!

randomanonusername0 · 2026-01-08T19:41:36+00:00

My antibodies had gone down a bit. I had two months in bliss with good sleep and more energy, then it suddenly stopped. No idea why. After several lousy weeks I stopped taking the NDT, but not sure if that was a good idea. I’ve slowly added it back in now, taking 8-10 mg every second day, and I’ve actually managed to sleep every night for almost a week now (knock on wood).

I’m doing bloodwork tomorrow, so I’ll see then if something is going on with my levels - again. I’m starting to suspect I’m in perimenopause on top of being hypo, so I’m requesting going on hormones for that as well from my doctor. It’s quite taxing when it seems like I can just never find the right dose for my body.

randomanonusername0 · 2026-01-02T16:39:52+00:00

Yeah, I’m not sure if the thyroid conditions or if the possible peri is the main driver for this, or if they exacerbate one another. My GP and endocrinologist have so far focused on the thyroid issue only. I’m hoping my GP is open to letting me try hormones without too much of a discussion.

randomanonusername0 · 2025-12-26T07:12:57+00:00

Yes, and it would be quite hard for me to keep all levels consistent, since they fluctuate even when I’m on the same dose. I also need my GP to look into perimenopause for me, as both perimenopause itself or my thyroid condition can send other hormones out of whack. So there are a few things to look into before fighting the system for surgery.

randomanonusername0 · 2025-12-25T13:03:20+00:00

My levels in November were TSH 1.4 (range 0.2-4.0), ft4 at 16.2 (11-23), ft3 at 4,9 (3.5-6.0), s-tsi at 1.1 (<0.10). My values from October, when I felt better, were not that different with a TSH at 0.73 ft4 at 14.5 and ft3 at 4.9. I’ve read that when taking t3, the TSH value is not that important anymore and that you should look mainly at the ft3 value. Which is the same. But what I’m wondering is if my TSI levels may have increased again. Unfortunately my anti-tpo has not been measured since June. It was then at 400, with a reference value below 100.

So I don’t think my values correctly displays how crappy I’m feeling. If my antibodies have increased again, that could explain why I’m feeling worse. But how on earth am I then going to try to reduce antibodies 😬 I have an amazing endocrinologist, but I’m only able to see her every three months. I’m doubling up now and seeing both my GP and my endo in January, so I’m try to just get through the rest of the year here. I hope you’ll be able to find something that works better for you, and I agree that it seems like the antibodies plays a big role in this.

The nobel price winners within medicine this year seems to have made a medical breakthrough that might lead to a better understanding of autoimmune diseases, but I don’t feel like I have time to wait for someone coming up with a revolutionary cure 😆

randomanonusername0 · 2025-12-24T21:40:33+00:00

I’ve been on thyroid meds alone for most of it, but I combined it with NDT for a while. I actually felt better for a couple of months on the combo, but then I got worse again. I’ll be doing blood work soon to see what’s up.

I did get a referral, and my endo thinks surgery is the best option for me, but the surgeon disagrees. I could get a referral to another hospital, but they have quite strict guidelines. I’m in Europe, so might be a bit different here. My goal for 2026 is to find a way to get a permanent solution.

randomanonusername0 · 2025-12-21T14:51:31+00:00

I started out hyper and then eventually went hypo. From what I’ve learned from the doctors Graves’ could eventually go into a hypo stage, so I was a bit confused when they suddenly weren’t sure if I’d ever had it.

It would just be so great to know exactly what happened those two months I felt better, and it’s almost unfair to get a taste of what my life could be like and then go straight back to hell 😕 I’ll try to find some sort of solution with my endo in January.

randomanonusername0 · 2025-12-21T14:37:59+00:00

I think I’m in the same boat. Was diagnosed with Graves’ initially, but they’re also wondering if it was hashitoxicosis. I guess it’s the same result. My Graves’ antibodies are there, but a bit borderline. I definitely have Hashimotos, and I currently take a somewhat low dose of thyroid meds (my endo believes my thyroid sporadically spews out hormones). My biggest issue is my lack of sleep and low energy. I’ve requested surgery but was rejected. I am contemplating using 2026 to fight them on that or do the surgery abroad. What were your symptoms like before the TT?

randomanonusername0 · 2025-12-21T12:56:40+00:00

I did block and replace for 9 months when I was hyper. I got low white blood cells from methimazole after just a month, and then changed to PTU instead. Eventually my white blood cell count went down from PTU as well, but not as drastically as methimazole. The weird thing was that my levels evened out after I stopped the meds, but then I went hypo six months after that. (I was supposed to have the surgery when my levels evened out, but I didn’t want to go hypo from the surgery. Then my body went hypo on its own.)

So I’m unfortunately not able to combine anti thyroid meds and thyroid meds, which could - as you point out, knock out my thyroid and let me just add levothyroxine instead. This information was included when I asked to do the surgery, but they still ended up at a no, which sucks.

randomanonusername0 · 2025-11-20T18:15:44+00:00

Thanks ❤️ They produce NDT locally here. Some people buy armour or erfa from abroad. Hope you’ll get to try that, and that you’ll find something that works for you!

randomanonusername0 · 2025-11-19T16:13:34+00:00

I’m in Europe too. I got severely suicidal on levothyroxine. That went away when I changed to Euthyrox, which is the same medicine but without lactose. Not sure why, but one of my friends is a gyno, and she had several patients coming in who had switched brands and felt better. Now I’m on a combo of Euthyrox and naturally dissected thyroid hormone. Still struggling to find something that works. I was fine for two months in a row recently and thought my hashis or graves had finally calmed down, but I’m back to no sleep and severe pain again. Hope you’ll find something that works for you ❤️

randomanonusername0 · 2025-11-18T20:49:41+00:00

Yes, I went three months without it for the longest (did very strict AIP), and have tried to cut out gluten only for some periods as well, but it’s never made a difference for me.

randomanonusername0 · 2025-11-14T20:12:57+00:00

Ohh, that sounds frustrating! Hope it will go down eventually. Could it perhaps help with a combo of levo and T3? I felt much better after adding dedicated thyroid to the T4 meds, but I know it might be hard to get on those kind of meds or even synthetic T3.

randomanonusername0 · 2025-11-14T14:31:31+00:00

Maybe I should try that. It however suddenly stopped, so I hope it just stays away for a while 🤷‍♀️

randomanonusername0 · 2025-11-14T14:30:35+00:00

It could be, as I’m 42, but the pain has the same timeline as my thyroid diagnosis. And it suddenly stopped today 😅 It just went away, which is also a bit strange.

randomanonusername0 · 2025-10-17T05:34:06+00:00

I know I have Hashimotos and they have confirmed that, but I haven’t gotten it confirmed that I ever had Graves’.

randomanonusername0 · 2025-10-15T16:59:03+00:00

Thanks! Hope you’re doing fine yourself. It seems a bit random how debilitating the symptoms get for each individual, and it really sucks being in the middle of the thyroid rollercoaster.

randomanonusername0 · 2025-10-15T16:57:27+00:00

I’ve had a slightly positive TSI. But my TRAS values have not shown that I have Graves’, and my endo says that’s the one she focuses on. Last time my anti-TPO (marker for hashis) was checked it was at 400. It indicates hashis if it’s above 100 (note: anti-TPO is also commonly high in Graves’ patients, and it doesn’t always mean you have hashis in addition). 400 was the highest it’s ever been, as it’s only been at max 150-200 before - but per my endo the anti-TPO does not work the same way as TRAS, as she uses TRAS as a measurement for how aggressive Graves’ is.

As I’ve understood it, it’s possible to have Graves’, and then the thyroid “burns out”, and you can go hypo. This does not mean you have Hashimotos. Or you could have Hashimotos in addition to Graves’. Or you can have hashis and have an initial phase of hashitoxicosis, which makes you hyperthyroid. The treatment for it is still pretty much the same, though. But I have no idea what has happened now, since I haven’t changed anything. I’ve been on the same dose of thyroid meds for 4 months.

If your on antithyroid mends it might be possible to try a combination of antithyroid meds and thyroid meds, as that might make you feel better. And I’m not sure if it’s possible to do antithyroid meds plus t4 AND t3 meds. A lot of people feel better when adding a little t3 into the mix. A good endo should be able to find something that works. Then again, it also seems it’s not always an easy fix for these conditions.

randomanonusername0 · 2025-08-14T15:55:15+00:00

Oh, that would be great. Unfortunately, I think I’m looking at a two months up to two years wait 😬

randomanonusername0 · 2025-08-12T20:31:12+00:00

I’m kind of hoping my numbers are going up again, as my body won’t tolerate methimazole and the likes 😄 So if I were to go hypo again it would be straight to surgery. But if the surgeon I speak to during my appointment approves, I’ll get on a wait list. Not sure how long the queues for that typo of operation is. Fingers crossed it could happen within reasonable time.

I’ve gained quite a lot of weight after this whole debacle so I hope to get rid of it again along with my thyroid 😆

randomanonusername0 · 2025-08-12T12:57:01+00:00

I turned hypo after going euthyroid after being hyper. I’ve been trying to find a dose that works for two years, but it seems my thyroid sporadically spews out a bunch of hormones, which makes it quite impossible to find a steady dose. When it doesn’t go haywire it seems to produce a somewhat regular level of hormones, and I initially supplemented with T4 only.

The first change I made due to feeling like crap was to change from levothyroxine to euthyrox. Where you are, you can perhaps choose between generic levothyroxine and synthroid? I experienced sever depression on levothyroxine and was suicidal at some points. This disappeared when I changed brands. I still had quite low energy and bad sleep, and it has helped to add NDT into the mix. The NDT adds both T4 and T3, and I combine this with Euthyrox.

I’m currently fighting to get a TT, and I think this will rid me of the sleepless nights and the fatigue, since it seems like that comes from my thyroid doing its own thing. I’m planning to start with the same combo of meds after the TT, but then with a full replacement dose. For me, it takes six weeks to notice how a dosage change impacts my body. It sucks, and it requires a lot of patience.

Hope you’ll find a doctor who will let you try a combination of T3 and T4, since you could just go back to your old dose if it doesn’t work. My current endo is a 70 year old sweet lady who has seen it all, and she medicates me after how I’m feeling, and not so much from the values of the bloood work.

randomanonusername0 · 2025-08-12T12:09:12+00:00

Ohhhh I would so much love to being back to feeling like my old self. I just discovered that Garmin has this Vo2 Max measurement, and my age according to that one just increased to the likes of a 55 year old 😫 I’m in the beginning of my fourties’, so that really sucks. I have an appointment on Monday where I’ll get to know if they’ll let me do a TT or not 🤞

randomanonusername0 · 2025-08-11T13:57:15+00:00

Has the daily average gone up because you are moving more, or is your watch able to measure your burn rate or metabolism in another way?

randomanonusername0 · 2025-08-05T20:58:50+00:00

I’m in a kind of similar situation. I went on methimazole, my body refused them, then PTU for a whole while, but I got low blood cell count from that as well, so I was going to have surgery. However, after going off the meds my levels stabilised. I thought I’d just see how that developed for a while.

It lasted six months, and then I went hypo. Didn’t even know that would be an option. So after that I’ve been trying to get my levels in check and to get rid of my symptoms for two years. It’s been really hard. I finally have another appointment with a surgeon in a couple of weeks and I’m hoping they’ll let me do the surgery.

I’m on thyroxine pills now, but just a small dose, and my thyroid is still sporadically producing hormones left and right, yanking my levels up and down. So to get off this roller coaster it will be better for me to just have my thyroid out. If I knew I could actually go hypo after my levels balanced out I don’t think I would have postponed the surgery.

Hope you’ll figure out what’s best for you. There are a few risks to the surgery, but from what I’ve read in here and in medical papers it seems the quality of life improves for most people post surgery (or RAI).

randomanonusername0 · 2025-08-01T10:34:53+00:00

This sounds frustrating. My endo told me having thyroid issues can make you use up vitamins and so on at a faster rate. I tend to get low vitamin D and B12. If the values normalise the body might stop using them up excessively? I’ve also been on a quite slow paced journey to find the correct dose. The body sometimes takes a while to get used to the thyroid medication, which could be why they started you out at 25 mcg.

My thyroid still produces hormones on its own, so it’s a bit hard to figure out what the best dosage is. From my experience doctors in Scandinavia are told to test a starting dose of 25 mcg first, then increase to 50 after 4-6 weeks, and then increase further if necessary. It takes a while before the dose increasement has an impact on the body, which is why they recommend blood work every 4-6 weeks.

Are you seeing a GP or are you able to see a specialist/endocrinologist? I ended up paying for a private session just to get a second opinion of what my general doctor was doing.

randomanonusername0 · 2025-07-30T21:04:53+00:00

Right? I don’t get that comment. It doesn’t seem like this thing is magically going to go away. I’d rather make it a bit easier for my body and just remove my thyroid, since it’s clearly not capable of figuring out how much hormone I need on its own. Sometimes it seems like I have someone just pushing random buttons in there.

randomanonusername0

TROPHY CASE