Graves for over 30 years, should I operate?

[vesnauk]

Hi, please help.

I was first diagnosed with Graves disease in my late 20s. I am now in my late 50s. I am a single parent of a disabled son.

For years my Graves was managed with a low dose of PTU, but I had some relapses due to high stress levels in addition to me stopping using meds for a period of time, the longest 2 years. There has always been some pressure from doctors for me to have a 'definitive' treatment but I have resisted. My thinking was that with age my thyroid will become less active which might lead to a time when perhaps antithyroid meds would not be needed.

Unfortunately in 2019 my thyroid relapsed but this time PTU would not work and for about 2 years thyroid levels would not come down sufficiently despite a very large dose. It coincided with Covid and an operation was not an option at the time. It was really awful, some days I felt so weak I struggled to get out of bed, get washed, sleep and generally cope. Last year my endocrinologist put me on Carbimazole instead of PTU and Bingo, after a few months my thyroid levels stabilised and I have been stable since October last year. Although my thyroid levels have been stable, I am struggling with the side effects of Carbimazole (10mg a day) bad gastritis, painful joints, low level headache, low energy, poor sleep.. All in all I am not in the greatest shape and feel that staying on Carbimazole is not an option in a long term. I had a recent scan and my thyroid looks healthy, is not enlarged any longer (it was during the period of instability), I have no issues with my eyes..

Over the years I have tried different supplements and diets but nothing worked well enough.

I think for me the stress levels are the key and despite efforts to control it, I

have to be realistic about being able to..

What do I do? I need to live and function to look after my son. I am worried about having another relapse and going through the hell of thyrotoxicosis again. I worry about the effect it would have on my heart, bones.. my skin is paper thin as it is.

I have been regularly monitored and supported by my endocrinologist who thinks removing my thyroid is the only right thing to do.

Is there anything left for me to try to fix my thyroid?

Surely I would not feel worse if operated my thyroid??

Please help me, I am in a muddle.

Thank you!!

[pennyannie]

Hello Vesnauk and welcome to the forum :

My goodness, what a journey and yes, the stress and anxiety factor hovers and triggers your immune system to go on the attack and sends your thyroid hormones ragging.

In some people, given enough time, Graves can burn itself out, but sadly it hasn't happened for you

I guess you know of the Elaine Moore Graves Disease Foundation website and the research and work Elaine has undertaken in publishing research into this poorly understood and badly treated auto immune disease. elaine-moore.com

I'm glad RAI has not been suggested as I had this for my Graves and deeply regret this treatment though wasn't given an option, and believe drinking a toxic substance for an AI disease, doesn't solve anything and in fact can compound one's health issues.

The other issue to consider is after care medication.

A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

T4 is basically a storage hormone and needs to be converted by your body into T3 which is the active hormone that runs the body and said to be around 4 x more powerful than T4.

Some people can get by on T4 - Levothyroxine only :

Some people find T4 seems to stop working as well as it once did and need the addition of T3 to replace that lost, when they had a thyroidectomy, making a T3/T4 combo :

Some people can't tolerate T4 and need to take T3 - Liothyronine only .

Whilst other people find they feel best taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.

NDT was successfully used for over 100 years to treat hypothyroidism until Big Pharma launched their own products on the back of NDT and succeeded in controlling market share.

Currently your primary care doctor can only prescribe T4 - Levothyroxine and you need to be assessed by an endocrinologist for either T3 or NDT and depending where you live in the UK it is a post code lottery and many of us on here now self medicate, me included, as we can't get help through our local surgery or CCG area.

I now need to buy my own thyroid hormone replacement and feel my best on NDT and managing lingering Graves, thyroid eye disease and hypothyroidism.

Do you have any recent results for ferritin, folate, B12 and vitamin D as when metabolism isn't running well it is extremely difficult to extract essential nutrients through ones food to keep one core strength strong and solid ?

Maybe there's something here that needs sorting to help and support you through your current issues and allow the Carbimazole or PTU to work better with less side effects ?

True all these anti thyroid drugs do is buy you time, but I am just concerned about your treatment options after you have had a thyroidectomy.

If you have confidence in your endocrinologist and know you will be offered all full thyroid hormone replacement options that at least, is one less hurdle to overcome.

[bantam12]

I had Graves on and off for over 30 years, tried all the treatments and in the end nothing would control my levels. I had already had a partial op in my teens so this time I asked for RAI, best thing I ever did and I wished I had done it sooner. That was 20 years ago and I’m well on Levo. My thoughts are why struggle on living with unpredictable Graves when there is the option to sort it once and for all, ok if we go Hypo we have to take Levo but for the majority that’s way easier than coping with Graves.

My sister also had Graves and surgery and has been well on Levo for nearly 50 years.

[Cavapoochonowner]

hello there, I was diagnosed with graves and TED in 2018.I too am in my fifties.I have been on either carbimazole only or with thyroxine as block and replace.I have tried for remission once but relapsed badly within 2 weeks.I got to a point where I'd had enough so I asked to be referred for a thyroidectomy June 2021.I had it done just over 2 weeks ago.Honestly the difference for me has been unbelievable.It's as if I am a new person.I am realistic it is very early days and I am still taking it very easy getting over the operation( which I worried unnecessarily about) .I feel so calm, like I've been flailing around in the rapids for 4 years and can now finally just float around.It really has been that different.All my horrible aching bones and joints have gone, not one headache( except 1 migraine straight after op but I expected that with having to starve)I feel I have actually time to think and do things properly without constantly racing thoughts and rushing around.I know I have to get my levels right yet and that will be first looked at when I have my 6 week post op appointment.I do wonder what my poor body has been going through these past 4 years.My legs feel ĺike jelly but I think it is due to muscle wastage and I will gently work on trying to get my strength back.I have tried to keep my profile updated so if you would be interested to take a look you can click on my picture to see what led me to make my decision.It is a bit of a read but may help.I know it's not right for everyone but so many people seemed to have regrets and I think that's what kept putting me off.I hope my positive story will help you look at both sides to make the right decision for you.

[PurpleNails Administrator]

The side effects you mention of bad gastritis, painful joints, low level headache, low energy, poor sleep can be associated with carbimazole but side affects usual subside after first few weeks. it’s often a case the carbimazole has lowered thyroid levels too much and you may now be hypothyroid, and these are all hypothyroid symtoms too.

Doctors often go solely by TSH (thyroid stimulating hormone) a pituitary hormone which signals thyroid to make hormone. Doctors like this in the healthy range. Usually the TSH being high means thyroid levels are low, and when it’s low doctors think is must mean thyroid levels are too high but that’s not always the case.

The TSH is not reliable and when you’ve been hyper it often stays very low which means doctors keep patients on higher levels of carbimazole to lower thyroid levels sometimes underage to force TSH to rise.

You need to obtain your recent results & make sure you are in the right range. TSH, FT4 & FT3. If it requires adjustment you might feel comfortable to remain on carbimazole long term.

Doctors tend to push the definitive option early on as they view hypothyroidism as easily treatable by GP whereas Hyper involves specialist monitoring but you’ve had a long struggle, so you may be at the stage where you are ready for surgery.