Graves disease / thyroid out - anyone?

My mum has it but I am no expert on it as it doesn't bother her too much and she keeps that sort of stuff to herself. All I get is 'I am grand'. I know she has had many a fight with the consultant regarding her thyroid meds/dosages as they want her to do one thing and she claims she knows what works for her etc. In fairness at 78yrs old she should kinda know. She takes eye drops (morning and night for dryness) and has the corrective sticker stuck on her glasses to help her vision. She did choose to stop driving about 10 years ago due to sight issues (still has her licence though as DVLA were never informed), but her sight seems fine with her glasses, no issues reading/ watching TV etc. Sometimes here eyes flare up and she has an ointment that settles them back down very quickly.

She is a very active person, walking/cycling yoga etc. Was even doing badminton until a few years ago. So while it has an obvious effect on her she just seems to adjust and crack on TBH.

I know of one person.  Its taken a while to get her thyroxine levels right but she is now well and before she really was not.

My missis didn't have it removed, but had some kind of radiation treatment to correct it when she was quite young which meant she went from overactive to under. Once the thyroxine dose was settled, after a few years she even got signed off from the consultant monitoring. Just an annual GP blood test now.
She's on Wharfrin for a different thing, that's much more of a PITA.

No Graves but had last half of my thyroid out a year ago.

Been easier to get thyroxine level right with no thyroid at all compared to people i know with underactive thyroid.

but had some kind of radiation treatment to correct it when she was quite young

Usually radioactive iodine to drink which is taken up by the thyroid and then part or all of the thyoid dies IIRC

Thanks all so far.  She can’t have the radioactive treatment as she has lupus.  The pills work, but within a couple of months of not taking them she rockets back up again… regardless of dose so the lupus is suspected of confusing things.  <br /><br />

At the moment the safest thing appears to have the Op, she can’t keep going through cycles of max HR at random moments / walking up the stairs.  

I had the radiation iodine treatment about 20 years ago, due to an overactive thyroid. As others have said once the thyroxine dose is worked out its just a case of monitoring the levels occasionally. At the time the doctor explained that long term it's better to use a natural supplement (thyroxine) than chemically suppressing high levels. Its just routine now, just take the pills in the morning along with my vitamins!

What treatment does she receive for lupus? Some immunosuppressants are being tested for thyroid eye disease (TED). The one that was eventually approved by the FDA (Tepezza) had failed in other indications.

My sister had her thyroid half removed and then Radioactive iodine for thyroid cancer. Procedure was uneventful, until sepsis. Possibly due to a sore throat which may have been due to haemolytic group A strep colonisation. So I’d say if she goes ahead, be sure she’s not suffering with a sore throat before the procedure!

Thanks again everyone.

She doesn’t take meds for her Lupus except in emergency flare ups which thankfully haven’t been common - Mostly she suffers from the unforeseen rejections of “normal” things as Lupus does, but being 30 yrs into it she knows what should and should be in her body.   It is of course entirely possible and even probable that it has a part to play in her Graves’ disease.

I’ve received some very good advice via PM so we are going to spend the next 1 month course of meds doing a lot more research and will probably revert to my companies private medical if consultation and surgery is needed.  Neither of us want to experience max HR at 3am again, it’s bloody frightening and can have  very bad outcome.

Thanks again

Coincidence! Just seen this after my pre op assessment; I'll get back to it when I get home later. TED and hyperactive thyroid burst on the scene 2yrs ago.

No info i can give you Kryton57 I'm afraid but want to wish your wife all the best in getting this sorted asap.

Must be terrifying when the max HR thing happens.

I've had half of mine removed, no issues. I have a small scar, but it's less bad than i expected. With having half removed i've been luck that i've not needed medication for it.

I have Graves’ disease, and my thyroid was fully removed in 2017.
I wasn’t sure it was the right thing to do so I dithered for a couple of years before deciding to have the operation. And to be honest it’s all been fine up to now.
Took a while to find the right dose of thyroxine for my needs , but once that was sorted I’ve had no problems at all.

@weeksy was it a decision to only have it partially removed or just how the operation turned out. I'm on the list for a full removal and the endocrinologist wouldn't consider partial.  I'm just so reluctant to become completely reliant on medication for the rest of my life.

I have TED as well as Graves so iodine isn't an option.

Sorry for the selfish hijack. 

It was the choice of the consultant, they found "something" and they were unsure what it was, so they wanted to perform the hemithyroidectomy, I just let them run with it. It was quite worrying as there was the usual "there's a slight chance......"

Thanks mate.