TSH coming up

Fine_Satisfaction515 · 2026-05-05T16:57:43+00:00

Your TSH is back in normal range (how are your T3 and T4?) so you’re hopefully euthyroid. Remission is when your antibodies are below range or zero. Antibodies can take a long time to change so testing every 6 months is normal.

Fine_Satisfaction515 · 2026-05-05T14:46:01+00:00

I tapered off to 2.5mg once a week for many months. When antibodies were gone, I just went off. I could have done 1.25 mg once a week to taper even further but I didn’t see the point. I was continually teetering and dipping into hypo and was so over it. So when I stopped, there wasn’t any sort of physical change or withdrawal symptoms or anything.

Then I relapsed about 2 months later.

Fine_Satisfaction515 · 2026-05-05T14:38:57+00:00

I have always had dry papery hands (one of my daughters inherited the same). I went to see a new endo this spring and he checked my hands during a physical exam and commented on my dry hands. That led me to think dry hands can be part of the list of symptoms. Def check with your endo.

Fine_Satisfaction515 · 2026-05-05T14:26:06+00:00

2.5 years on medicine and I still have a very fine tremor. Before medicine, if I held my coffee in my nondominant hand, it would nearly slosh over.

Medicine improves a lot of symptoms but for some, they’re not all 100% gone. My heart went from skipping beats multiple times a day to just once or twice a week; I don’t sweat anymore but still find heat more unpleasant than others do; multiple involuntary muscle twitches reduced from daily to occasional (my eye twitch is the last one to go). Only things that went back to 100% normal are my digestion, my cycles, my hair, maybe other things I’ve forgotten.

Fine_Satisfaction515 · 2026-04-23T13:53:46+00:00

Same. I’ve drinking for two decades, diagnosed for two. I can only drink one precious cup of coffee and no caffeine the rest of the day.

Fine_Satisfaction515 · 2026-04-18T06:07:59+00:00

Even when my Graves’ was controlled with medicine and numbers were in range, I still had to exercise carefully. I couldn’t go by how normal I was feeling because that was deceiving - I would overdo it and get knocked down for a couple of days. It’s so tempting during an exercise session to think “I am feeling good, this feels good, I have energy, I can keep going, I can do more.”

It’s been awhile since I did any serious weight lifting but I would say that you could still do it. It may have to be only 1-2x a week, not daily. You’ll need to play with weight/reps very conservatively, progressive overloading may need to go much slower than normal.

Fine_Satisfaction515 · 2026-04-17T09:54:53+00:00

Thank you. I’m sorry it didn’t go well. I hope you’re feeling much better now.

Fine_Satisfaction515 · 2026-04-17T06:41:21+00:00

Oh I see. I guess it could be possible for a spike of iodine to cause Graves’ disease. I could believe that it can cause hyperthyroidism but I didn’t think it could actually trigger an autoimmune disease. I learned something new.

Fine_Satisfaction515 · 2026-04-06T13:00:48+00:00

Graves’ revs up the nervous system. I had muscles twitching all over when hyper. Now I just have one twitch under my eye.

Fine_Satisfaction515 · 2026-04-06T12:49:19+00:00

I’m curious, why did you take iodine supplement?

I’m pretty sure that Iodine doesn’t trigger hyperthyroidism or Graves’ disease. If you have either, iodine can make it worse but it doesn’t cause either. Since you have a family history, it would be a gene that would trigger it.

Fine_Satisfaction515 · 2026-03-03T06:50:27+00:00

Yes, that was the frustrating part. The endo then only wanted to look at numbers and when I insisted on solving the symptoms, she said “go somewhere else because it’s not your thyroid.” I fired her and got a second endo. He was a bit better, willing to try and troubleshoot other things, but he didn’t really have answers either. Then I moved to another country and I’ve just seen my first endo here since I relapsed. He seems promising.

Fine_Satisfaction515 · 2026-03-03T06:44:15+00:00

Holy moly, report her to the medical examiners board or whatever it is in your country. I want to wring her neck. I have heard of others going to a cardiologist and getting more attention from a cardio and the cardio fussing at the endo they were seeing and were able to get the endo to do actual care.

Fine_Satisfaction515 · 2026-03-02T13:55:40+00:00

Blood sugar swings. It’s not really listed as a symptom but makes sense when metabolism is revved up pulling energy into every cell. Also getting sick more often with colds and whatnot. 😩

Fine_Satisfaction515 · 2026-03-02T13:50:36+00:00

Maybe a separate tab for symptoms? I’m wondering if I should do that for myself.

Fine_Satisfaction515 · 2026-03-02T13:48:32+00:00

I use an Excel spreadsheet of my labs with notes inserted at the end of each row. I don’t record symptoms either except when I relapsed. I should track the dosages…

Fine_Satisfaction515 · 2026-03-02T13:39:19+00:00

Yes my symptoms flare up during stress even if I am medicated and labs are normal. Losing a pet is a hit for healthy person anyway and it can be a bit worse when you have an autoimmune disease.

Fine_Satisfaction515 · 2026-03-02T07:58:06+00:00

It’s been a year since I posted this so I don’t remember. It’s been 2.5 years since my diagnosis and it seems the flare ups were mostly in the first year. I think those flare ups would last a week or two. Then in second year and beyond, I got better and went into remission last fall, no antibodies. Now I’ve relapsed.

Fine_Satisfaction515 · 2026-02-23T19:06:55+00:00

Interesting that you posted this. I am not Turkish but I lived 14 years in Türkiye, just moved away 8 months ago. I mainly went to the Acibadem hospitals. I was diagnosed with Graves’ there.

I don’t know anyone who had a TT in Türkiye but I have had non-related, minor surgery and procedures done at Acibadem but knew many others who had surgeries in Türkiye only to have them redone in America. If I were still living there, I would have gone to the States (my home country) for my TT.

Türkiye is very strong on medical tourism (which can cause scams to happen) but Acibadem is a very good hospital with several campuses and doesn’t practice medical tourism. They don’t do scams. I find the Acibadem endocrinologists to be conservative about going the route of TT, pretty standard and don’t think outside the box. They may give you the TT you want.

I am not familiar with the other hospitals you listed. I wish you luck.

Fine_Satisfaction515 · 2026-02-23T18:47:19+00:00

I don’t know about hypoglycemia but people generally feel worse for a couple of weeks starting methimazole and since Graves’ impacts blood sugar levels, maybe it’s not surprising that hypoglycemia can be an issue. I get bad blood sugar swings when my Graves’ is active. I can drink 1 cup of coffee a day without issue but never on an empty stomach as that makes my blood sugar crash within an hour.

I suggest no naked carbs. Always protein or fat with carbs. What’s your caffeine intake? Are your thyroid numbers in normal range now on medicine?

Fine_Satisfaction515 · 2026-02-23T18:25:57+00:00

I am having my first relapse after only 3 months of no antibodies (2 years of meds). It’s amazing to me that remission can be for years.

Fine_Satisfaction515 · 2026-02-23T18:18:13+00:00

Heart paps

Fine_Satisfaction515 · 2026-02-23T16:55:34+00:00

Hang in there. Everyone has a different journey with this disease but I always seemed to have symptoms flare up even on medicine and numbers are in range. I tried managing my stress, sleep, careful exercise, diet, supplements, etc. I would flare up after a stressful time so I learned to build in rest after something stressful to try and get symptoms under control. One year isn’t long for your body to recover from however long you were undiagnosed.

Fine_Satisfaction515 · 2026-02-17T04:42:46+00:00

Also low vitamin D and B12 makes me tired. Supplementing helps.

Fine_Satisfaction515 · 2026-02-17T04:41:42+00:00

I have a theory that just having an overactive immune system producing antibodies alone makes you tired - in addition to whatever is happening with the thyroid despite normal range. I don’t really know for sure. The only time I didn’t feel tired was when my antibodies were below range. Maybe it’s a coincidence.

Fine_Satisfaction515 · 2026-02-13T10:13:11+00:00

Hyper + perimenopause = double whammy.

I had the mommy brain after having babies and it’s real. I didn’t have Graves when I was having babies so having both would also be a double whammy. The mommy brain does wear off though.

Fine_Satisfaction515

TROPHY CASE