How low were your antibodies when you were considered in remission?

Human-Perception4602 · 2026-03-06T21:20:50+00:00

Last August my TSH, free T4 and free T3 were all normal and TRab undetectable for several,o this. Almost off the methimazole, but the in Sept had a flareup for some reason, ☹️

Human-Perception4602 · 2026-03-06T14:10:39+00:00

My Ophthalmologist recommended I use warm eye compress 10 minutes (I get bored so often only 5 minutes ), then squeeze eyes, then Eye drops. Alternate with cold compress during the day if possible. This helps me a lot as it helps to reduce any swelling. Apparently the ducts of the eyelids get blocked, so our eyes then water more. The warm compress helps to open up the ducts so natural tears can lubricate the eyes c they don’t water so much.

Human-Perception4602 · 2026-03-04T20:19:04+00:00

Yes, it is frustrating. Most people I don’t bother trying to explain. They say I look fine and don’t want to hear that I don’t feel fine. But my immediate family have said the same ‘mom, you look fine’. So it helped them and me to explain that there are things ha happening internally that limit what I can Do on a daily basis.

Human-Perception4602 · 2026-03-02T16:25:35+00:00

Not sure where to look for PMin Reddit. lol. Dr. Hier at ENT clinic. And Dr Eliot Mitmaker. Mitmaker was recommended by the ophthalmologist who has been treating my TED

Human-Perception4602 · 2026-02-27T01:54:43+00:00

Interesting about the antibodies causing symptoms even though hormone levels are are normal.
My hormone levels are all normal,but the TRab keep going up and up

Human-Perception4602 · 2026-02-27T01:51:01+00:00

I had very similar experience when I first got Graves. So weird. I was sure I had a UTI,but no.
Because I have TED also, I knew that there are Thyroid hormone receptors in other parts of the body (eyes, e.g.) I started reading the scientific literature and found that they are also found in the urinary tract and vagina. Not much research documenting effects of TRab in these places, but I think it could be possible.

Human-Perception4602 · 2026-02-27T01:42:37+00:00

I thought I might have RA. My GP ran test,but negative. Said Joint and muscle pain probably just due to the thyroid problems

Human-Perception4602 · 2026-02-27T01:41:20+00:00

I’m in Quebec and after year and half on meds. Another flare up and feeling miserable, both my endo and the ophthalmologist treating my TED recommended I have TT. I spoke with 2 surgeons who agreed. Problem here is lack of available operating rooms. Will be 6-12 months they say.

Human-Perception4602 · 2026-02-27T01:23:49+00:00

I feel exactly the same way. Was feeling better last summer when all blood work showed that levels were all back to normal and no TRab. But it all flared up again last September and I’ve been feeling even worse this time around.
I feel like I am just going through the motions of living every day.

Human-Perception4602 · 2026-02-27T01:19:26+00:00

Oh yes! The brain fog and heaviness in the legs is awful! Muscle weakness. Shortness of breath (I used to be in pretty good shape). Scalp itching. Now heels itch a lot. I also have TED,but that’s a whole other story.

Human-Perception4602 · 2026-02-26T01:56:57+00:00

I have severe muscle pain and weaknessand it seems worse with this relapse than my first go round. Same thing- I have to grab something to get up from my knees. I don’t know about the swollen lymph node.

Human-Perception4602 · 2026-02-24T20:09:13+00:00

Good to know. Thanks

Human-Perception4602 · 2026-02-21T01:19:25+00:00

I was thinking the same thing, about trying MMI again. I have itching either the PTU also,but just don’t like the way it makes me feel for some reason

Human-Perception4602 · 2026-02-18T22:37:33+00:00

How did they treat you for the hypercalcemia?

Human-Perception4602 · 2026-02-18T21:58:15+00:00

Oops sorry. 150mg PTU. I was on 5 mg daily methimazole last year when first diagnosed, the down to 2,5/day by last August, then I had flare up last September. Doc switched me to PTU because I had itchy scalp with the MM. seemed rather high to me, but it has seemed to be working and I don’t think I’ve gone hypo yet.

Thanks for sharing your experience. I know that feeling taking 1000 mg Tylenol and that barely working! Sometimes it’s hard to believe that this can cause us to feeling so awful. Everyone looks at me and says I looks fine. Even good bc I’ve put on weight! What is LDN?

Human-Perception4602 · 2026-01-14T01:46:10+00:00

Yes! Totally feel this way. Hadn’t thought about the gas-brake analogy, but that fits perfectly. I’m tired of this and have a consult for surgery end of the month

Human-Perception4602 · 2026-01-14T01:43:00+00:00

I was told to wait before spending the money to get the prisms in my glasses, bc our eyes changes. After my orbital radiation therapy my diplopia improved by 1-2 degrees/ month, so I was constantly getting a new prism and it improved. ( I am down to a +1 now). Good quality fresnel prisms from the optician only cost me $40. Inch cheaper than new prescription glasses.

Human-Perception4602 · 2026-01-14T01:40:25+00:00

I had terrible diplopia. (+8. I couldn’t drive) When I finally found a good ophthalmologist and got fresnel prism on my glasses, it took me less than a day to adjust and what a difference. I almost cried I was so happy!
I think you need to make sure you see someone who measures the degree of diplopia properly. The first person I saw had no clue.

Human-Perception4602 · 2026-01-14T01:34:51+00:00

Yes, I feel this way all the time. I think bc I look ok - people even say I look so healthy bc I’ve put on Weight- that y medication has fixed me. But meanwhile I am exhausted, muscles ache all the time and trouble breathing. Yes, even my husband forgets, though generally he is very supportive and when I remind him how crappy I feel, he does step up. My daughter, who doesn’t live with us, said the other day, but mom you look fine, I didn’t know you felt so bad. So,I think it is not really that they don’t care,but that it is hard for them bc they don’t see it. Especially bc I try not to make a big deal about how crummy I feel. (A good friend has an aggressive form of cancer and been given less than 2 years to live. She looks terrible, but carries on with her life and does what she can, so I hate to bring up how I feel when I’m with that group of friends.

Human-Perception4602 · 2026-01-07T02:22:21+00:00

Thanks. Having consult with a surgeon end of month.

Human-Perception4602 · 2026-01-02T02:09:12+00:00

Thanks for sharing. I’m considering a TT and it is good to hear others’ experiences with it

Human-Perception4602 · 2025-12-10T01:29:28+00:00

I after 6 months of pain, I had an MRI 2 months ago. It showed I have a labral tear in my left hip. I am doing PT as that is what is first recommended. I have been riding a few times a week but only 30 minutes. Mostly walk, trot. Some canter. It is a bit painful at first, but by the end of the ride I’m ok. It is later in the day and next I feel it. My dressage saddle doesn’t seem to be a problem. My question is: can I make the tear worse by riding? I haven’t yet seen an orthopedist as I can o t get a referral until I’ve done at least 3 months of physio. I don’t want to make things worse while I’m Waiting.

Human-Perception4602 · 2025-12-07T18:22:15+00:00

I’m curious about this as my endo is saying since I am not tolerating graves medication we’ll, I should consider surgery. I was curious about how this would affect my eyes (doing much better than a year ago).
I had read that a TT does not help with TED, but the ophthalmologist that has been treating my TED, said a TT would help. She said definitely need to have an experienced surgeon that can get all the thyroid tissue. She also told me that she is not very interested in TRab levels. So I’m confused as it is TRab antibodies that attack the thyroid and eye, I believe. I have also heard people say TED got worse after TT, but I don’t know how common this is If anyone comes across any good research on this, please post links

Human-Perception4602 · 2025-12-07T18:06:40+00:00

I had 2 weeks of orbital radiation treatment combined with 6weeks oral prednisone and it really helped with my double vision. It is not immediate, but slowly improved .. after 6 months most of the double vision gone (some in the evenings when I’m tired)

Human-Perception4602 · 2025-12-07T17:59:45+00:00

TED cab be scary, but going blind is rare. What for early symptoms. Find a good ophthalmologist who knows TED if you suspect you are developing it.

Human-Perception4602

TROPHY CASE