After 7 years of hyperthyroid I'd got down to a tiny daily dose of Carbimazole and feeling fine. Last year I got into a mess with a builder doing some work on my house, it failed the building inspector. I've had a working relationship with the builder for 13 years and feel terribly let down and betrayed, all he wants is more money out of me and the dispute is heading for court proceedings.
A few weeks back, every time he contacted me I had racing heart and felt like I'd been punched in the guts, I thought it was anxiety but last week the racing, thumping heart was there all the time, especially at night, I'm losing weight and have tremors, all horribly familiar.
Blood test yesterday showed the highest readings since I was diagnosed 7 years ago, back on beta blockers again to slow my heart down and increased Carbimazole.
I am totally distraught that this has happened again, my question to all of you here is, do you think this upsetting dispute could have caused a hyper flare? I know I didn't react fast enough because I thought it was just anxiety, but I've never had readings like this in years, even when I've been told to stop medication as a trial.
Nobody who hasn't been hyperthryoid can understand, they think I'm neurotic & over-reacting.
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fairydogmother
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I am not medically qualified but I believe that an upset such as you've had with your builder could cause a flare-up. Other members who also have hyPERthyroid will also respond.
The fact that we've (hypo or hyper) we have to take medication to keep our thyroid hormones at an optimum (not too little or too much) our body cannot operate in the same way as it did before we were diagnosed.
Try not to worry too much (and I know this is easier to say than do) take beta-blockers until your heartbeats become normal again. and they should take the strain at present and you can slowly recover your equilibriam.
Whether we're hypo or hyper with hormones out of sinc we will have to slowly allow our body to settle down and allow it to get back to feeling well again.
I think stress can affect us because I got upset with my neighbour after she instructed a man to cut my trees without my permission. I had "Graves Rage" and I threatened the man with a lawsuit over trees! I did overreact and I had to lie down on the bed afterwards because my heart was beating so fast and I was shaking. This was a few weeks ago and I seem to have calmed down now. I do have to keep my cool if someone gets too close to me when I am out shopping. I shouted at man who came and stood beside me in Tescos because he was not 2 metres away. He soon got the message! These are stressful times and I know it can affect my condition. I have no idea what my bloods are but when I last had them taken my T4 was 22 and top of the range and my TSH was 0.38 so within range. Once lockdown is over I will have another blood test to see if this is the reason I keep losing my temper all the time. I personally think it is what is happening at the moment with the coronavirus which is making me feel like this but I will have to wait and see.
Hopefully your levels will get better now you have increased your medication .
Oh gosh, I remember the Graves Rage..if you tangle with someone who has active Graves’ your best hope is that their mouths will physically be unable to keep up with their brains (quite possible) and the damaging and incisive diatribe in their heads will never be able to escape coherently
My husband has told me I can be evil when I lose my temper and he is probably right. Before I had thyroid disease I had a slight temper but since I became ill I will tell people exactly what I think about them online and in my real life. It is as if I think something and before I can stop myself I just say it lol. Standing in a queue a couple of weeks ago at M & S an oldish fat man started to tell me and my husband about how his girlfriend had left him for a drug dealer. Before I could stop myself I said "I don't blame her" This was after listening to him drone on about his life for about 15 minutes. Being trapped in a queue with a boring talkative person is my worst nightmare. Afterwards my husband said "I cannot believe how rude you were to that poor man" I said "Well it did stop him talking to us didn't it?" 😃
How were you diagnosed hyperthyroid? Did you have any antibody testing?
Something like you're going through could make anyone react violently, in one way or another. I remember when I had a plumber destroy my kitchen, it made me very ill. But, I'm hypo, not hyper. It is most destressing. So sorry you're having to go through all this.
A few years ago I had a run with a man who did some work on my house so I gave him some adverse publicity online and I did it anonymously so he did not know it was me. I am not suggesting you do something like that but a lot of builders get work by recommendations and letting other people know what he has done will put off others from using him.
Maybe you were dropping out of remission anyway, and the stress of the building situation just tipped the balance, or made your symptoms more evident, you’ll never know. As you say, your symptoms are horribly familiar, but hopefully the increased carbimazole will do the trick, and you will be able to return to keeping the Graves’ under control with a long-term, low dose. I remember how I felt when first diagnosed, and never want to go there again.
I definitely felt that stress made my symptoms worse, and the problem is, as anxiety is itself a symptom of Graves’, the more stressed and anxious you feel, the more stressed and anxious you get. Unfortunately, it sounds as though you will be in a difficult situation for a while. Not easy under current circs, but try working out some strategies that will help reduce the stress ....sitting in the sunshine listening to birdsong, taking a walk in the park, listening to beautiful music, even doing some yoga...it may sound corny, but it can help.
Thank you so much everyone, the nurse who drew the blood and the doctor this morning (who isn't my regular GP) both mentioned radioiodine, I can't have that because I've had thyroid eye disease. I was diagnosed on symptoms only, the consultant endocrinologist said antibody testing wasn't necessary and pushed me hard to have surgical thyroidectomy, I am scared of being pressured again.
I don't want that, my regular GP knows and hasn't pushed me at all, she will call me tomorrow and with the advice you've given me I will talk to her about stress triggers and hope she will back me up in getting back to a low maintenance dose.
My emotional excesses tend to tearfulness rather than rage at present, I am very upset indeed that someone I trusted and relied on as a friend has done this to me. I got him out of a mess with finances some years back and feel so betrayed that he has repaid me by taking my money for dud work, trashing my house, and refusing to put things right without taking more money. I paid someone else in the end. Sorry, I am bouncing my frustration and unhappiness because you have been so sympathetic.
The beta blockers have helped, the terrifying night heart pounding has stopped, and I am taking every chance of calming activities, not corny at all!
They can’t actually make you have either RAI or thyroidectomy - you would have to sign a consent form for either, and if you refuse and your thyroid levels remain high, they will need to keep you on carbimazole,
There is always some residual risk with carbimazole side-effects, even after many years and at quite a low dose, so you need to weigh this up against the downsides of the other options.
There is also the question of how stable your thyroid will be once your levels are back to normal. You might think that one remission in seven years wasn’t too bad, but what if they become more frequent ? Also, living with the effects of consistently high thyroid levels is not healthy, and often not comfortable. It isn’t a simple choice, and the problem is once you’ve had RAI or TT, there is no going back.
If your endo starts pushing you, I would just say that with all that is going on in your life at the moment, you don’t feel it’s the right time to make such a big decision, and that if they keep pushing you, your answer will be ‘no’. That should buy you some breathing space to get back to feeling more normal, do some research, and weigh up your options.
Given the Covid19 situation, it’s unlikely you would be able to have RAI or TT any time soon, anyway, unless it was an emergency.
Thank you, that's super-well-reasoned advice. I've been able to keep my levels in range almost all the time on a low dose, the consultants I saw don't like that and discharged me back to my GP because I was 'choosing to self medicate'. It is indeed the irreversibility of permanent thyroid destruction that puts me off. I am so cross with myself that I let this happen but after the inconclusive 'anxiety' bit there was a sudden sharp downturn last week. I don't seem to present any signs at all till I go over FT4 30 and then it goes off a cliff.
Don’t beat yourself up...dropping out of remission is not uncommon, and the anxiety caused by your experience with the builder may well just have been a coincidence (although your Graves’ won’t help you to deal with it). If this hadn’t happened, chances are you would still have come out of remission at that point.
Most people on long-term carbimazole are discharged back to the GP’s care unless/until they come out of remission, because if the treatment is maintaining your thyroid levels stable and within range, you don’t need regular specialist care. Your carbimazole is presumably prescribed by your GP, based on initial instructions from your specialist, so hardly ‘self medication’.
Whenever my levels rise or refuse to come down despite increased dose of carbimazole, my endo always asks me if I've been under any stress.
The last couple of times the answer was definitely "yes". The stress that (may have) caused these two episodes wasn't "Graves-rage" inducing stress but deep, sad, emotional stuff, being let down, f*cked over and ending up feeling worthless.
So yes, I do think it's very possible that your builder problems could have triggered your flare.
I recognise the misery of that "I thought I was getting better" feeling and hope that this is just a blip and you return to feeling ok again soon.
thank you for that understanding, the consultants I've seen recognise nothing other than thyroid malfunction, they don't mention the immune involvement or any sort of trigger other than heredity, which is nil in my family. From the insight in replies here I am feeling more confident that it is a blip, I will be more careful about 'anxiety' signs in the future!
I was diagnosed on symptoms only, the consultant endocrinologist said antibody testing wasn't necessary and pushed me hard to have surgical thyroidectomy
Your consultant was very wrong. You cannot diagnose by symptoms only. You need the antibody testing. And, if they try to push you into a thyroidectomy, push back with antibody testing - full antibody testing for both Hashi's and Grave's. Tell them you will not agree to anything until they've done that.
Thank you, one of the reasons I didn't want to follow the consultant's advice is the production-line one-size-fits-all approach.
I was tested for thyroid peroxidase antibodies at the request of the oculoplastic surgeon who saw me for lid correction surgery, that test was normal and I've never been tested for TSI. I doubt my GP would agree as the consultant said it was unnecessary, he said I have Graves and that's that, if it doesn't go away after 18 months' medication then it's radio iodine or surgery, end of story.
I have read that most endo's are diabetes-orientated, certainly seems true in my case, nothing matters except the TSH reading and if it stays suppressed then it's thyroid destruction or you are a silly woman who doesn't deserve medical treatment, go away and play with your GP.
Thank you, one of the reasons I didn't want to follow the consultant's advice is the production-line one-size-fits-all approach.
That's a very good reason not to follow the consultant's advice, as that approach leaves lots of people sick and suffering.
I was tested for thyroid peroxidase antibodies at the request of the oculoplastic surgeon who saw me for lid correction surgery, that test was normal
Unfortunately, one negative test for TPOab means nothing, because antibodies fluctuate. Have you ever had an ultrasound on your thyroid? If not, request one.
I've never been tested for TSI. I doubt my GP would agree as the consultant said it was unnecessary, he said I have Graves and that's that
That is very unprofessional. You should not be treating a patient for a disease unless you know they have it. And, it's so easy to find out! Just test TSI or TRAB. And, if it were me, I would be kicking up a hell of a fuss and threatening legal action.
if it doesn't go away after 18 months' medication then it's radio iodine or surgery, end of story.
But, they cannot force you to have the treatment. They can't tie you down and administer it against your will, that would be assault, and is illegal. Doctors are not there to dictate to you, they are there to advise. Whether or not you take their advice is up to you. There comes a time when you just have to put your foot down and say no!
I have read that most endo's are diabetes-orientated, certainly seems true in my case, nothing matters except the TSH reading
That is very true. And they are. And, they tend to have some very weird ideas about thyroid treatment. Which is why forums like this exist, and why thyroid patients have to learn about their own disease and advocate for themselves.
if it stays suppressed then it's thyroid destruction or you are a silly woman who doesn't deserve medical treatment, go away and play with your GP.
As I said, they have some very strange, false ideas about thyroid, and you'd probably be better off without an endo, anyway.
So, if your doctors won't test your antibodies, why not get them done privately. You don't need any doctor's permission to do that.
Nobody's ever suggested ultrasound, what would that be looking for?
My GP is very sympathetic and supportive, when I told her what the consultant had said about surgery she said 'that is just one physician's view' and has never tried herself to push me. The GP I spoke with today is not my regular doctor so I need to stop panicking and wait to speak with her tomorrow, today's replies have helped me calm down.
You might like to take a look at the Elaine Moore Graves Disease Foundation website.
Elaine has Graves and went through RAI thyroid ablation in the late 1990's. Finding no help with her continued ill heath, and being a medical researcher/technician starting researching herself and then wrote a book to help other people in similar situations.
Roll on a good few years and she now runs the most complete, well respected website for all things Graves, and related auto immune complications.
I'm with Graves post RAI thyroid ablation in 2005, a treatment I deeply regret, but sadly at the time, I knew no better. I now manage lingering Graves, thyroid eye disease and hypothyroidism.
Graves is for life, it's an auto immune disease and would tend to think this current episode and upset, would have still happened irrespective of whether you had a thyroid or not.
If you can please stay on the low dose AT medications.
Professor Toft the eminent endocrinologist wrote a very good article in his final years in the NHS. It is on this website somewhere, but sorry, I don't understand cut & paste.
Thyroid Hormone Replacement - A Counterblast To Guidelines is definitely worth finding and is totally relevant to all of us. On the third page, a third of the way down, he writes that he is so concerned about the state of advice in primary care that he is reluctant to suggest RAI or a thyroidectomy to his Graves patients irrespective of age or number of recurrences of hyperthyroidism.
Graves seems to be a poorly understood and badly treated auto immune disease with the mainstream medical suggestion of thyroid removal, or burnt out in situ with RAI. . Trust me, it doesn't stop when the gland is removed, original symptoms might become less severe, but we are looking at an auto immune disease that just happens to attack the thyroid, and it's because the thyroid is such a major gland that the symptoms of living without adequate treatment of thyroid hormone replacement simply compounds the original problem.
The thyroid that is the victim in all this and not the cause - the cause is your immune system being activated by stress / anxiety and attacking your thyroid.
I've been a follower of Elaine Moore for years, it was her experience and advice that helped me decide to refuse surgery and I have seen her frequent references to stress.
What's different for me with this latest relapse is the severity of the emotional battering, might sound prima donna but there is long history between me & the builder, I worked for him when he got in a financial mess and helped him over that and he's done other work for me over the years which has always been fine, I've trusted him absolutely for a long time.
So it was a massive shock when this project went so wrong, he's taken a lot of money for it and won't admit he made any mistakes so I have had to sort it out with the council myself, from a starting point of not knowing which end of screwdriver does what.
Massive learning curve in both building and law, exhausting, time consuming and upsetting, and I didn't know whether that sort of experience could trigger a hyper flare of this dimension.
I have also heard of Prof Toft and his guidelines on remaining in the high end of the reference range have helped me a lot, the medics I've seen think anyone is 100% well if they are anywhere in the reference ranges and on the verge of death if they are any tiny fraction outside.
However, I have to agree that my test today of FT4 45 is probably not a good idea!
Hey there, yes, I totally understand the betrayal you must feel and every action you take against this person is probably exacerbating your health.
I've been in a similar situation when diagnosed with Graves in 2003 having been attacked a member of staff I had employed - there were no witnesses, he told me this himself, so only presume he'd done it before to somebody else. The more I fought for his dismissal, the more ill I became, and just wish I knew all about Graves then, as I would have resigned, vacated the space and saved myself, rather than stay on to protect my fellow volunteers who didn't understand the situation as I remained stoic thinking I was doing the best by them.
Now after RAI - can't write " treatment " as it implies it's made me better - and years on, I read all about Graves from Elaine Moore and look back in understanding and forgive myself, for not being stronger, for being too trusting, and not being better able to deal with this man, and sometimes I just need to stop beating myself up, quite what for, sometimes I wonder.
I'm still not good with confrontation, and likely to cave in and walk away rather than do what is the right thing that most people might do, as I know my health will suffer.
Can you up the AT medication and try and ride out this extreme phase - you have been there before and you do know the way back from here.
Yes I have upped the ATD last week when the signs became more clear (at first they were intermittent so I thought it was anxiety) and again today on my GP's advice. From past experience I will be back in range within a month.
I know exactly what you mean about confrontation, I considered this builder as a friend, last summer he was bringing his kids & dog round to sit in my garden drinking tea and eating my home-made cake! Every time I hear from him following the dispute I start pinging with anxiety signs because I can't get my head round his change of attitude, nothing but money matters now.
So as it seems the awfulness has at least contributed to this latest flare, or made it harder to cope with, like you I am weighing up the stress values of walking away and losing a lot of money, knowing he has got away with cheating me, against going to court to get it back.
I am sorry your RAI didn't 'fix' you and while I can't have that after eye disease, I am not at all convinced that thyroidectomy surgery will 'fix' me, either
And, why would you want to drink a toxic substance ? Who would, in their right mind ?
The treatment options are like being between a rock and a hard place.
Either drink a substance that burns out your thyroid, and maybe, if your unlucky gives you thyroid eye disease and if very unlucky it may also damage other glands and organs in your body and may at a later stage cause cancer, or you can have your throat slit open.
I became very unwell some 8 years after ingesting RAI - with what I believe to have been oral and gastric mucosa, but received no acknowledgement or help from the NHS.
I think it was because I was dosed and monitored on TSH blood tests with a view to being kept in the range and never on how I felt and offered anti depressants when I tried to complain.
There are fuller details on my profile page should you wish :
Were you not offered the choice of antithyroid drugs?
My consultant would not accept that as a valid long-term treatment and treated me as though I was some kind of ungrateful imbecile because I didn't want surgery and you're right about treatment taking no account of anything except laboratory test ranges.
My GP is more interested in how I feel, so I stick with her.
Antidepressants? from my one experience of hypo through overmedication I can see why!
I went to the doctor as I was exhausted, had dry gritty eyes and insomnia.
He took bloods and phoned me at work the following day to tell me to come back into the surgery the same day.
He told me I had Graves Disease and asked me to hold out my hands. I thought he was going to tell me something awful - but in fact he wanted to see the fine tremor on my middle finger then held my hands which were warm and sweaty, and simply said I wasn't to worry it's name didn't imply that I could die from it.
He put me on Carbimazole and I was well on this AT drug and resumed work after a couple of days. At my first hospital appointment I was told I would be having RAI in around 15 months time as although I was well on Carb I wasn't allowed to stay on it too long as it was dangerous.
It was then 2003, I was around 56 in age, in total shock and simply accepted that the doctor knew best how to help me.
Had I been told about the risk of developing thyroid eye disease from having RAI my vanity would definitely have kicked in, but I wasn't advised of anything nor given the option of a thyroidectomy.
I've learnt of my situation back to front, but RAI is still the NHS treatment of choice though considered barbaric in many other countries. It is a quick fix in the outpatient department of Nuclear Medicine probably somewhere in the basement and a discharge back out into primary care, job done.
Similarly in other countries there are alternative thyroid hormone replacements, in the form of T3. T4, T3/T4 combo, and Natural Desiccated Thyroid. At this point in time T4 is the only thyroid hormone replacement readily available on the NHS. and those patients successfully being treated on other than T4 are actively encouraged to switch to T4 only, because it is the cheapest of all the thyroid hormone replacements.
No options are available unless you can afford to go privately, where the benefits and rules change and you can pay to get your health back.
The guidelines in place, though recently updated, are still not fit for purpose and take no account of the auto immune component of thyroid disease.
There are no special instructions regarding Graves Disease after RAI - it's pot luck if you have a doctor in primary care who knows what to do - my doctor was deemed to be the thyroid lead but had never treated a " Graves " patient - I took this to mean she might look it up and find out what was necessary, but no, you are treated as primary hypothyroid and monitored on the known unreliability of the TSH in Graves patients.
I did offer her a copy of Elaine Moore's book when my investigations for Sjogren's Syndrome as suggested by my dentist, proved negative. At this time I'd started my own research and found that Elaine clearly states symptoms similar to Sjogren's can occur in Graves patients after RAI treatment, and that some Graves patients do better on a T3/T4 combo, but she declined Elaine's book and simply referred to me as a conundrum.
Needless to say I'm now self medicating buy my own thyroid hormone replacement and getting my life back as best I can.
Professor Toft's article from 2017 as mentioned earlier sums up the situation perfectly.
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Why am I feeling worse not better?
Never getting it sorted
Is it normal for your heart to race and other symptoms after carbimazole has reduced your t4 levels? 
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