My 65 year old mother is very unwell. She had breast cancer 5years ago, and two years later was diagnosed with Graves (elevated thyrotropin antibodies). Her TSH was 0.001, and T4 was 50. She had a very elevated heart rate, heart palpitations, weight loss, hot flushes, nausea, extreme fatigue (bed bound), insomnia, bran fog, depression, and severe anxiety. She was so sick we initially thought the cancer was back.
She was treated with carbimazole, and has been unsuccessful in coming off of it entirely (she is on half the recommended minimum dose). Her symptoms flare and TSH drops if she comes off of it entirely.
She has not been well since the Graves, but 18months ago her extreme symptoms resurfaced, and she was bed bound for 2 months. The drs do not think it is thyroid related as her bloods are 'normal', although they are really only looking at her TSH (initially they were concerned about cancer, then ME and depression as a cause). Her last TSH:
TSH 1.74 mIU/L (0.55-4.78)
Free T4 13.4 pmol/L (11.5-22.7)
She has come in and out of these episodes (though by out I mean they become less, not disappear, she is able to sleep more easily, heart rate is more normal than not etc, depression is less extreme, but her fatigue is a droning constant).
Since new year she has become more and more unwell again, and is now once again bed bound, severely depressed etc.
Please, please if anyone out there has any recommendations for an endo that is empathetic, and really know their stuff about graves, please pm me. We are absolutely desperate to save my mum. She is disappearing, and I am not sure how many more times/how much longer her body and mind can be put through this hell.
We live in the far north of Scotland, so if anyone has a private endo who does telephone consultations that would be ideal.
Many thanks for taking the time to read, and to give suggestions if you have any
Written by
arcticsun
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If her antibodies TSI/TRab are high at least you'll know it's the Graves, again., and you've
been there before, and got through it.
At least you'll need to rule in or out, and hopefully this might stop all the guess work.
It's an autoimmune disease - it's for life - it waxes and wanes - and I read no 2 people present in the same way - hence very poor understanding in medical world -
She was initially diagnosed with high TRab antibodies, but these have never been tested again as the NHS has been after confirmation of Graves there is no value in knowing if these antibody levels have fallen as it doesn't change treatment. Given that she has never been well since being diagnosed with Graves, we do not know if her TRab antibodies levels have ever dropped at all, and she has never managed to get off of Carbimazole without her symptoms further flaring I guess we don't know if during these 'extreme' episodes if the antibodies are raised further, or just as they have been through out. You make a valid point though. I wonder if it is likely that the antibodies would have been lower since her initial diagnosis given her carbimazole dose is so much lower to maintain TSH now.
Goodness it's seems such a frighteningly daunting task to untangle all of this. I hope it leads somewhere, and that that somewhere is treatable.
I was on carbimazole, then RAI and that is definitely, in my opinion, a NoNo.
On Carbimazole - I can't remember the dose and don't remember much adjustment to it but just " soldiered on " - until I drank the drink, and ablated my thyroid.
All this does is kill the thyroid, which is under attack from the antibodies.
The thyroid is a major gland and the implications of this gland malfunctioning can be
life threatening - as I'm sure you are aware.
I didn't have the option of thyroid surgery which I read is a better, and a more contained option " just removing the thyroid " rather than drinking a toxic substance that goes through the whole body, and can, and has damaged other parts of my body.
For which, I might add, I have received no help, acknowledgement from Nhs.
Once with TRab antibodies you have them for life.
They "sit on " and control the TSH making it an unreliable measure of anything.
I read there is now a vaccine under trial for Graves Disease.
If this is successful and can " kill off " the Graves antibody, won't that be fantastic.
Seeing a leading endocrinologist, you would think, would be a good move.
But obviously the journey alone can be daunting at this point in time.
I read there are alternatives to Carbimazole. I'm sorry I don't know enough.
I read Graves thrives on stress and anxiety, and diet and life style changes may help.
I would think a full thyroid panel and vitamins and minerals as detailed on this website need to be tested and advise on these will be forthcoming from people better qualified than myself.
I have had to learn about my own situation.
Elaine Moore's book - Graves Disease A Practical Guide - has been my goto - there is also a very comprehensive website - USA based so medical protocol slightly different.
This lady has Graves and drank the RAI -
Dr Barry Durrant Peatfield - Your Thyroid and How to Keep it Healthy - a easy good read about all things thyroid. This doctor has hypothyroidism so writes from a doctor and also a patient's perspective.
There is an article you might like to read, it's on this amazing website:-
Thyroid Hormone replacement - A Counterblast to Guidelines : Professor Toft : December 2017 Journal of the Royal College of Physicians of Edinburgh.
On the last page ( 3 ) half way down the left hand side there is a reference to people
who seem unable to find remission on anti thyroid medication.
Interesting that Graves thrives on stress and anxiety, I think since graves mum has been so easily stressed, and that in seems like a catch 22 where the stress makes the graves symptoms worse and worse.
Thanks very much for the recommended reading-much appreciated
Yes, it's a bit like the chicken and egg scenario - or push and pull -
I can't " turn off " until I've done everything I planned to do - even down to silly things - like putting things back in the cupboard. It is irrational, especially when you're exhausted, on your knees, and just want to sleep. But there's the rub, you can't sleep 'cause you haven't finished putting the stuff in the cupboard.
It sounds crazy, just typing this, but of course, it's not necessarily about the teacup -
the brain needs to turn off and unwind to allow you good sleep, and that again can be a catch 22.
My main symptoms before diagnosis were insomnia and exhaustion.
Carbimazole solved these two issues pretty quickly.
You may have to travel to a good hospital to see an Endo with experience in the area of Graves disease and then after the consultation, they might be able to liaise with your GP to manage your mother's care in her local area. There must be an expert in Edinburgh. I would find the best expert to start off with and then take it from there. Do not hesitate to travel if you find an expert because I've discovered the person you see really makes a difference. If you do a Google search, find someone who is part of a team doing research in the area of Graves disease and has a specialty, not just an 'interest' in Graves disease. Check it's a department that has a specialty in Thyroid disease.
Thanks for 'speciality' info Nanaedake, I have taken note!
I have found a Dr in Edinburgh who used to be Dr to the queen, but his opinions seem a little changeable and I am unsure how likely he is to treat on symptoms rather than bloods. I will continue to hunt!
Edinburgh is about a 6hr drive from us. It is doable, though I may have to wait to see if my mother gets just a little relief first, as I am not sure if her body and mind could take such a journey currently. If that was our best option though I would absolutely bite the bullet.
I am not apposed to drs that are further afield, but willing to communicate via telephone etc. I myself was a patient of Dr Vanderpump in London via telephone, and it worked well. Though this was thyroid/pregnancy related.
If your mum has had Graves' disease confirmed by TSi/TRab testing, I would be inclined to think that she is perhaps over medicated even though her dr says her bloods are in range. I wonder what dose of carbimazole she is taking?
Drs should not treat according to TSH. The aim of anti thyroid treatment is to maintain Ft4 in the mid to upper range. Your mums TSH may then quite possibly be suppressed.
As slow dragon recommended get vitamin D, B12 etc tested as people with Graves can often be deficient.
Take a look at Elaine-moore.com. Elaine Moore is a medical writer and retired clinical laboratory scientist with over 30 years experience in immunology. She also has Graves' disease but had RAI some years ago. This lady has a wealth of information about Graves' disease and she runs a forum so you can post any questions you may have and she will then reply in due course.
She is on a dose of 2.5mg of carbimazole currently. Her dr isn't happy with that, and has requested she take what he refers to as the minimum dose of 5mg. If she takes 5mg she gets hypo symptoms, and if she takes no carbimazole her TSH drops and she has more hyper symptoms. He is only interested in her TSH, though he does test FT4 as you can see from my post. She has never had T3 tested.
Thanks for the recommendation about Elaine-moore, I will take a look.
- what is your mum's current dose of carbimazole ?
- what dose has she been on immediately before previous attempts to take her off it ?
My thinking is:
- if her carbimazole was reduced after the last test, her results may be better now. If it was reduced following the previous set of tests, and her FT4 in the most recent tests was higher than in the previous set, the endo may simply be taking things slowly to minimise the chances of relapse. Not comfortable for your mum. but an approach that makes sense (and which a good endo should be able to explain).
- there isn't really a 'usual minimum dose'. Some people on long-term carbimazole take 5mg/day (the lowest dose tablet), some 2.5mg day (half a tablet) and some 2.5mg every other day. (splitting those tiny tablets often results in a lot of crumbs, so inevitably a slightly reduced dose....and splitting them takes a bit of dexterity, don't know how your mum stands with this). The problem with taking the tablets every other day is that if a dose is missed, there can be a big gap, and from what you've said in another thread, your mother's Graves' has taken off pretty quickly when she has relapsed.
- whatever dose your mum was on before previous attempts to take her off carbimazole altogether is the lowest dose at which her thyroid levels have remained in range in the past. At a dose somewhere between that dose and nothing, her Graves' has relapsed. Any attempt to go below that dose needs to be done with careful monitoring and frequent testing.
-the tests above were done on the 21st December 2018, about 5 weeks ago. She was feeling really fatigued as usual, but the severe symptoms came on about 2 weeks later. She caught a cold on Jan 1st, and they just followed on from that, coming to a head about 2weeks ago (house bound). I hadn't mentioned the cold, though perhaps it's relevant, but previously these severe episodes have not been linked to any obvious virus, so it seemed to me either unrelated, or perhaps something that pushed her immune system into overdrive on this particular occasion.
-carbimazole was last reduced on 21/5/17 (when it was lowered from 5mg to 0mg) until 23/8/17, when it was increased to 2.5mg. So over 18months ago, she was on 0mg for 3months, and the increase back up to 2.5mg was just 1 week prior to the first severe episode since her initial one at diagnosis. Hmmmmm
-her current dose is 2.5mg.
-she was on a dose of 5mg prior to both attempts to take her off of it.
Her endo has said that he will leave her on the maintenance dose of 2.5mg, to have bloods checked every 6months, and all is well with her thyroid He previously suggested RAI, but as she has declined that for now, he has kind of washed his hands of her.
Some people on long-term carbimazole or towards the end of titration go down to 2.5mg every other day. While this could be an option as your mum's FT4 results are pretty low in the range, it might be worth finding a more sympathetic endo first, because this reduction is 'unknown terrritory', and it may be advisable to have more frequent testing in place when the dose is first reduced.
Obviously this is getting pretty close to no carbimazole at all, which has previously led to a relapse, so good compliance would be important.
Thanks very much Valarian, your replies have been really helpful. I very much appreciate you taking the time to share your thoughts with me, which are infinitely more well read than mine.
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He previously suggested RAI, but as she has declined that for now, he has kind of washed his hands of her.
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