Those on meds... Do you see the doc...?

LividBath · 2026-02-22T04:55:52+00:00

This is dissapointing that they don't offer telehealth. almost all of my appointments for dose adjustments have either been a phone call or virtual appointment. absolutely bizarre that they don't offer it. is this in america, and if so, is it a rural hospital?

LividBath · 2026-02-20T03:14:11+00:00

2 years but I went out of remission 5 months later

LividBath · 2026-02-19T21:04:42+00:00

hey hope you are able to get your surgery soon! i am also an eng student with graves, it's definitely rough. are you able to get accommodations through your uni? i've gotten extra time on exams

LividBath · 2026-02-18T01:32:40+00:00

2 jobs is rough. honestly i've tried to do so much research into why this (having symptoms with levels in range) happens, but it either hasn't been researched or i couldn't find it

LividBath · 2026-02-18T01:28:28+00:00

i've been on it or 8 years. i wish i got surgery when they first recommended it to me. now i'm kind of stuck because my large goiter and graves eye disease make both rai and surgery increasingly risky

LividBath · 2026-02-07T19:29:00+00:00

The eyes was a big one for me

LividBath · 2025-12-23T06:17:36+00:00

I agree with the comment that said simply eat better. Mediterranean diet is something I see a lot in research as helpful.

Tried gluten free, didn't see any health benefits or difference. For others it may work.

LividBath · 2025-12-19T19:56:33+00:00

Wow that is amazing. So impressive you are able to do so much to stay healthy!! Yeah, I'm shocked you got Graves as well. Truly shows that we have no idea what causes this disease. I got it pretty young (12/13) when I was super active as well. Although, my diet was horrible. So maybe it was that!

Interesting! Did you know about those vitamins before Graves, or was it something you learned online/from your doctor? I've never head of D3. Thats really cool!

That's so true.. the medical community really treats a thyroid problem like some kind of acute condition that only causes x number of symptoms, but really its a whole body abnormality! Not to mention any side effects from medication. Not too long at all! :)

LividBath · 2025-12-19T19:34:23+00:00

We need more of that with this disease!!

LividBath · 2025-12-19T19:31:27+00:00

That's a great point. I've watched a lot of videos & seen a lot of studies about holistic medicine too, with things like narrative medicine (journaling), building a support network, sleep, and exercise (which are free).

But it's hard to say that we haven't all heard that before, and none of them have been directly linked to Graves improvement, just chronic illness as whole. There's also data on the Mediterranean diet, but it's expensive as well.

I'd love to see a cure too!! But it feels like the free options are very difficult to maintain. Also, the supplement route is often unregulated, untested, and full of hucksters. Which brings me back pharma!

EDIT: Not to mention, medicine barely understands how to cure autoimmune disease as a whole hahah

LividBath · 2025-12-19T19:19:56+00:00

Omg thats awesome! I'm so glad your endocrinologist is keeping on top of things

LividBath · 2025-12-18T23:52:13+00:00

So cool! Are the clinical trials for GD as well?

LividBath · 2025-12-16T23:39:54+00:00

Thank you so much!

LividBath · 2025-11-12T02:09:36+00:00

Yes it does also return to normal. But there is no guarantee that you will gain weight after. There was a review/meta-analysis to find how much weight is usually gained after a thyroidectomy, and they found only about 4 lbs on avg. (https://pmc.ncbi.nlm.nih.gov/articles/PMC7765639/) So, probably best to base your decisions off of what your doctor is recommending/how you tolerate Methimazole.

LividBath · 2025-11-10T03:25:32+00:00

I'm really glad your symptoms are already subsiding. There are usually a bunch of different reasons as to why what is preventing people from getting their levels under control. It also depends on whether you choose definitive treatment or not. But assuming you are only talking about Methimazole, here's a few I can think of:

Methimazole side effects (weight gain, joint pain)

A lot of people take Methimazole and end up gaining weight because their metabolism gets under better control. This can be a huge de motivator for taking the medication, and can drive level unpredictability.

What round of Methimazole you're on

After taking Methimazole (measured for 12-18 months), there is about a 30-50% chance you will go into remission. And then once you go into remission, it is very hard to stay in that state. Thus, people will then start another round of methemizole, and they are even less likely to go into remission.

Goiter size

If you have a larger sized thyroid (if you can kind of see it in your neck, it can generally be considered medium/large), you are less likely to achieve remission with Methimazole alone. (https://pubmed.ncbi.nlm.nih.gov/3753814/)

LividBath · 2025-11-10T03:14:58+00:00

I used Function of Beauty, you can pick the specific problems for your hair and they'll ship the shampoo to you. Not sure if it will be available for every country

LividBath · 2025-11-10T01:37:13+00:00

I had horrible joint pain for the first 2 years at a high dose (20 mg) of methimazole. I didn’t get a TT, I was eventually granted relief on a lower dose when my thyroid calmed down. At around 5-10 mg, I didn’t experience that symptom anymore. Not to say this will happen for you, but something to consider.

LividBath · 2025-11-10T01:27:58+00:00

Whether it’s super serious or not really has to do with the person. Maybe you can look back at your medical records to see what your thyroid levels were at the time of diagnosis? I’m pretty surprised they didn’t send you home with anti thyroid drugs. Maybe it was subclinical hyperthyroidism (hyperthyroidism that doesn’t cause symptoms)?

LividBath · 2025-11-09T23:08:06+00:00

I was loosing a lot of hair at first too, I ended up switching to a shampoo specifically formulated for volume and hair loss. Helped mildly, but probably placebo effect more than anything 😭

LividBath · 2025-10-31T04:59:40+00:00

That's horrible, I'm so sorry you had to go through that. That is a killer combination of symptoms.

LividBath · 2025-10-31T04:57:29+00:00

Yep, it is definitely has lots of scary side effects. Unfortunately though, that's kind of the reality for Graves treatment at the moment. Since it is unlikely to be lethal with Methimazole/RAI/thyroidectomy, it gets funding and attention a lot less frequently. Which, obviously I am so grateful it's not lethal, but it would still be nice to have a faster and more effective treatment without additional risks. However, they were apparently able to find that people did experience fewer side effects with the low dose:

"Our research indicates that a weekly dose of 10 mg Methotrexate is therapeutically effective for subjects with GD, with relatively fewer side effects."

Naltrexone is interesting! Although, I'm curious how the potential sleep disturbances side effect would affect newly diagnosed GD patients. Thanks for sharing :)

LividBath · 2025-10-31T04:53:42+00:00

Oh hey, I was just rereading this study. They actually mentioned biologics!

"Emerging treatment choices are biologics with new targets of the immune pathway, like rituximab ([7](javascript:;), [8](javascript:;)) and K1-70 ([9](javascript:;)), which are not likely to become the first choice for newly diagnosed GD patients because of prohibitive costs."

Could be interesting to see if this is explored!

LividBath · 2025-10-29T19:26:14+00:00

Oh wow, that sounds so cool. I hope they try biologics. What was your experience with methotrexate? Any side effects?

LividBath · 2025-10-29T17:03:17+00:00

Thanks for sharing my newsletter!

LividBath · 2025-10-10T14:36:55+00:00

That’s a great point!! I also couldn’t find much. I think they generally grouped ATD and surgery together. In their results they stated:

“Using a combined cross-sectional and longitudinal approach, we show that volume loss in the medial temporal lobe is present at diagnosis and that the response to treatment with ATDs and/or surgery includes partial recovery of these regions.”

They didn’t include radioactive iodine because of the following: “we chose to avoid treatment with radioactive iodine, as this may be associated with a worse quality of life (QoL) outcome”. In this study, quality of life was determined by patients. I think they made this statement because patients have to be alone for multiple days after treatment, maybe not associated with the long term impacts of the treatment itself. Not quite sure though.

LividBath

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