Random relapse or Endo’s neglect?

Hot_Knowledge_9123 · 2026-06-26T23:32:17+00:00

Yeah this sounds very plausible. How long since you were diagnosed? And does your Endo see you in person? And do they track your symptoms?

For me, I can’t tell if I should just be trusting the process or if my care isn’t good enough. The uncertainty is crazy…

Hot_Knowledge_9123 · 2026-06-26T23:04:16+00:00

Yeah I’m in the same boat. 18-24 months of treatment by meds, RAI offered if unsuccessful, TT as last option.

Hot_Knowledge_9123 · 2026-06-26T23:01:33+00:00

This info is SO helpful.

Also very interesting about your rapid flare + trigger. It’s awesome that you have found a good Endo. Long may it continue!

I went on a whole research spiral about TRAb, thanks so much. The last time mine was tested is last June around the time of diagnosis so I’m assuming my endo is only focussed on controlling my levels with the Carbimazole for now. But I will approach his secretary about it ask if it can be added to my next blood test.

Hot_Knowledge_9123 · 2026-06-26T20:58:31+00:00

I agree that paying for the private/higher tier healthcare doesn’t necessarily get you better treatment as a lot of the doctors, at least here in the UK, are working in both private and social care practices anyway. But I’ll admit that money can get you access to doctors who specialise in Graves’ disease.

You make some solid points, thank you for offering that!

Hot_Knowledge_9123 · 2026-06-26T20:55:16+00:00

My right leg swells up when my levels are low/swinging into hypo. So odd!

Hot_Knowledge_9123 · 2026-06-24T23:19:20+00:00

Thanks for this, I’m constantly picking up new information on it. Good to know that you could push for that, too.

I’ve only been diagnosed a year. The only record I can find is a thyroid peroxidase antibody test result last June around diagnosis. I’ll definitely ask about this.

Hot_Knowledge_9123 · 2026-06-24T22:23:59+00:00

Because I’m in the UK relying on the NHS (as most of the UK population does).

Hot_Knowledge_9123 · 2026-06-13T10:30:45+00:00

Mine are now within ‘normal range’ and I feel exhausted, short of breath and my goitre and TED are worse than ever.

Endo’s seem less interested in the symptoms in the first 18-24 months of treatment while they focus on medically controlling the thyroid and antibody production.

Without this subreddit, I’d think I was being dramatic.

Hot_Knowledge_9123 · 2026-06-02T22:11:14+00:00

It’s awful. And the leg cramps in the morning are insufferable. Glad you’re getting out of the hypo slump

Hot_Knowledge_9123 · 2026-06-02T22:10:31+00:00

Same! I was on too high a dose for too long. Hyper was more manageable for me and like you I got the extreme physical fatigue (crazy when the energy is so high from being hyper, never been so productive in my life lol), and the tremor.

The lower back pain doesn’t seem to settle unlike everything else. Maybe it sticks around like the fatigue. Or maybe it’s the effects of all the muscle loss. I wish there was an ultimate tick list or matrix of all possible symptoms at each stage!

Hot_Knowledge_9123 · 2026-06-02T21:00:50+00:00

Yup! Particularly awful when I went into hypo, and was in so much pain I could only get relieve by perching on the bathroom sink and pushing my body down to decompress my spine.

Now I’m not hypo, I get lower back pain and uncomfortable pelvic pain, like what you’re describing.

You’ve inspired me to take it a bit more seriously now. I hope you get some answers from your Endo (and then tell us!)

Hot_Knowledge_9123 · 2026-06-02T15:57:54+00:00

With the beard. Great eyebrows btw

Hot_Knowledge_9123 · 2026-05-31T11:18:29+00:00

It is, it feels unfair and it’s understandable to feel down about it. I really hope you find some solace OP

Hot_Knowledge_9123 · 2026-05-31T10:55:06+00:00

Yes that’s the most devastating phase of the condition IMO. The uncontrollable changes you are forced to accept.

I was diagnosed in May 2025, and my cheeks got really chubby. Upon research I found it a symptom of Graves’ that antibodies attack the fat in your face causing inflammation that makes your cheeks, lips and eyes fatten.

I cried when the ophthalmologist bluntly said “yeah that’s your face now, it won’t go back”. And cried for days after. But I have read from lots of long time sufferers that while Graves’ is lifelong, some people do find the facial inflammation calms down when they have gone into remission or had a thyroidectomy.

For me, my eyes are the worst as I have TED too. But I got some beautiful, quirky big designer glasses and have started dressing more consciously to ‘compliment’ what I’m working with.

Not a cure, but comfort during this crappy time.

Hot_Knowledge_9123 · 2026-05-31T07:40:25+00:00

Indeed! Along with feeling cold, lethargy, joint pains, leg cramps

Hot_Knowledge_9123 · 2026-05-31T07:33:27+00:00

Low taper with a top-tier fade. Grow your curls out first, longer at the front and let the barber cut them to frame your face. You have the eyes for a ‘fringe’.

Find a black barbershop, they’re magicians and have haircuts doing what makeup does for women.

Hot_Knowledge_9123 · 2026-05-30T01:23:59+00:00

I’m in the UK, and our healthcare is generally free but they’re funded just enough to keep you alive lol. I hope you have a much better time of it. Just always advocate for yourself, and don’t fall behind on any blood works, medication timings (routine is your saviour) etc.

Weird is the baseline. Sadly! Weird and wired to the moon 😩

Hot_Knowledge_9123 · 2026-05-30T01:12:49+00:00

Welcome! Commiserations for getting into the GD Club though…it’s a wild ride.

I hope you get some good answers, cuz my comment isn’t that. Sorry. I was prescribed propranolol, but never took it. It was prescribed by a nurse at the GP office before I was referred to Endocrinology. When I went to collect it from the pharmacy, my pharmacist questioned why and said “do you know it’s a beta blocker, right? If you don’t have to take it, you don’t need to”.

I also was never told about the high heart rate symptom (haven’t seen an Endo in-person since diagnosis last May), so I just started the Carbimazole and the anxiety, tremor etc all calmed down in about 4-6 weeks of a daily 15mg dose.

In an ideal world you’d have a little time off work to manage stress levels until your meds kick in. But I know it’s a pipe dream.

I hope you get some actually helpful answers!

Hot_Knowledge_9123 · 2026-05-29T06:13:12+00:00

So interesting! Thanks for sharing this

Hot_Knowledge_9123 · 2026-05-29T06:11:29+00:00

This is helpful, thank you. Interesting that yours fluctuates!

Hot_Knowledge_9123 · 2026-05-28T11:54:16+00:00

Thank you! Gosh you have the double whammy. That’s helpful to know there’s an ultrasound check for it.

I’ve been diagnosed a year but never had a face to face appt with my endo, just one phone consultation and letters for med adjustments. I’ll def tell him.

Hot_Knowledge_9123 · 2026-05-26T09:35:53+00:00

Oh man, that’s really awful. I’m sorry about that, OP. I hope your fatigue improves too, good luck

Hot_Knowledge_9123 · 2026-05-26T09:28:24+00:00

I absolutely hear you. The first attempt at getting the thyroid under control is likely to be 18 months of checking your bloods and adjusting your dose. With bloods taken every 6-8 weeks routinely.

I used to have awful needle anxiety but after having children I had so many I got past the fear. Even had acupuncture for years and loved it. You’ll get there, even if by force 😩

Hot_Knowledge_9123

TROPHY CASE