This is first time I have posted anything about this. I was diagnosed with Graves in 2016. Treatment then was satisfactory - mainly getting regular blood tests, mainly 3 monthly and hospital appointments but had two further relapses recently from 2021/22 and current one since Feb 2023 - each time getting worse and treatment has been shocking and awful, like not getting a hospital appointment for over a year and then only because I kept ringing up for one. Since my two relapses I am not getting hospital appointments sent or blood tests unless I ring up and then it is a struggle. I complained to Endo's secretary but she is abrupt/unsympathetic and also to my GP about lack of (and difficulty accessing) blood tests and he just more or less said that is how it is and to get used to it! Since this last relapse I asked my GP to change my Endo to another one which has now just happened. I also rung NHS PALS and they apologised and said they would write to endocrinology about it but it would not be an official complaint? Why? So all feels like just a waste of time. Nothing will happen.
The problem is the symptoms I get seem to come on severely and quite suddenly without too much warning - usually the first I really know is my heart is racing very fast (tachycardia) with difficulty breathing, chest pain, coughing and sweating profusely and I generally end up in A&E usually via ambulance. I sweat that much that they have difficulty doing ECG as they can never get the pads to stick and usually are worried by my sweating so much. I feel as if I am having a heart attack. I do get other symptoms like inability to sleep, tiredness/fatigued, weak muscles, high blood presuure, extreme anxiety, hand tremors etc. but not too much until heart is out of control so I don't have time to make doctors appointments as it takes about 3 to 5 weeks with my GP surgery to firstly get appointment with Dr. (usually a week/10 days) then get a blood test appointment (week or two) then wait for results - it shouldn't but has taken up to 11 days to get results back from GP - and then get medication (Bisoprolol) prescribed again whilst Dr. writes to Endo to "get advice" again (to restart Graves medications) and by this time I would be well and truly dead so hence I usually end up in A&E which last time I had an 18 hour wait for treatment and around 4 hours before I was even triaged (well apparently I am in the Trust area with the longest A&E wait times in the country.) When I had bloods done (by the next day) I was told my readings were very high - all I was told was that one of them was well up in the 50's by A&E doctor - I'm not that familiar with readings so not sure if this would be my TSH, T4 or T3. They said I could stay in hospital but I said I wanted to get home to my partner as I said she would look after me if I had some medication. The beta-blockers were not fully controlling my heart rate though and it kept racing but I stayed in bed mostly for 4 weeks not doing anything much. I am scared my heart will be damaged. Felt absolutely awful and like a version of hell I never want to go back to. Thought I would die. Also before I got diagnosed I knew a guy who became a sort of friend, who had Graves (and TED) and had not been treated (well only with medication) and had a heart attack and died due to it as it was on front page of local newspaper at the time. He was quite well known as a local businessman. Not sure if he was in remission or not at the time but utterly terrible for him, his partner and kids - and only in his early 50's.
Since my latest relapse (Feb) I now actually have my first hospital appointment with endocrinologist next Tuesday after they cancelled it twice and had to chase to get this one. I do know a fair bit about Graves Disease now (although I am not really that au fait yet with blood readings/reference ranges etc.) due to reading about it myself online from many websites such as this one - I don't know if I am allowed to mention the others. (I have read many of Pennyannie's posts regarding RAI and what happened after her treatment. It's terrible how the NHS can do this to people suffering with such an awful disease - its scandalous!) I have read a lot about RAI treatment and throidectomy and the downsides of these and then being on lifelong Levothyroxine and then the possibility of then being under treated by NHS without any T3 medication should you need this due to problems in some people with the conversion of T4 to T3 in the body.
Even though I addressed all these concerns with my former endocrinologist and had even printed off Professor Toft's (the former NHS endocrinologist) paper concerning these issues and his views on them, he just said he had read it and my concerns were true and valid and then said I could stay on Carbimazole and try to get back into remission. At the next appointment however, when I was in remission and he stopped my medication, he said if I relapsed for a second time I would have to have RAI or surgery, no question. I again expressed my concerns but he wouldn't listen and said that was it and my short appointment time was up so I had to leave.
Obviously then in Feb I did relapse and it was much worse, as already explained, and in A&E again. Also in Feb I was put on 40mg Carbimazole daily but feeling terrible in April/May and no monitoring/blood tests I complained to GP and when done found I was well hypothyroid (underactive) as well as causing my white blood count (neutrophils) to be abnormally low around 1.7 (ref range 2.0 - 7.7). I am aware of Agranulocytosis due to this so worries me. I was told to stop Carbimazole immediately but then about two weeks later put on Block & Replace for first time (40mg Carbimazole/100mcg Levothyroxine) as well as still on the beta blocker. Subsequently on 9th June I had bloods done again and neutrophils then 2.21 so just bit above low range. I thought being on 40mg Carbimazole again I would have had more regular blood tests due to low blood count but GP said due in over 3 months (in September).
So I am very scared and feel like I am between a rock and a hard place as all options are terrible i.e. I carry on like this with virtually no life, relapses, constantly on edge due to this and feels like just a death sentence waiting to happen or alternatively undergo surgery which I don't want (and feel like due to one or two other conditions I won't necessarily come through it anyway) or have this awful poison, RAI, and kill my thyroid with the associated higher cancer risks/pulmonary problems and then possibly undertreatment by NHS if the only treatment they normally prescribe (T4) doesn't work/stops working and then risk being hypo for rest of life. I can't afford to pay for my own T3 drugs at those prices - I can't work anymore. Also having suffered hypo just recently, due to the overtreatment with AT drug, you don't ever really want to be there - feeling tired all the time (although still insomnia), weak/fatigued, depressed real bad (which I never have had before), muscles so weak I kept pulling them even just from walking (both calves), arms that weak you can't raise them above your head for any time at all (my bicep muscle felt like it was going to pull just trying to dry my hair with towel), put on quite a bit of weight, no interest in anything whatsoever.
Hence I'm totally lost and don't know what to say at my appointment on Tuesday with endocrinologist. I know they will just push me into RAI or surgery. Don't know what I am to do? How do I proceed from here - all the options are so horribly bleak. Even my partner cries a lot at how ill I am and the state I'm in and I feel really bad and guilty how it affects her life as well as mine as we don't do anything anymore. Back in 2021 when I relapsed again, I asked my GP about being on Carbimazole and risk of low immunity (as well as an apparent risk of low immunity just by having Graves itself my endo has said) with Covid/Flu etc. and he said "if you're worried don't go out/shield" so only place I go to now is food shopping but with FP3 masks and so does my partner. It's just too much for us both and with all the pandemic as well as this I feel so burnt out.
I appreciate nobody can tell me what to do but any wise words/own stories about Graves or experience of RAI/thyroidectomy and subsequent hypothyroid disease and Levothyroxine treatment very much appreciated. I have to think of some darn thing to say to endocrinologist before Tuesday.
Many thanks to you all.🙂
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AllButBroken
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I had a partial thyroid removal 45 years ago and I’m glad I did it. I survived with 50% of my thyroid with normal readings for over 15 years then went hypo thyroid
I know it feels scary and it feels like nobody understands. But we do. I am now on Levo and didn’t really have problems I just made sure I was on the right vitamins. But lately due to age and HRT I now have acid reflux
I’ve been lucky. I’ve done a lot for my mindset. Therapies counselling alternative stuff like reiki and acupuncture for stress and anxiety if all worked for me
Thank you for replying and your reassurance as somebody who has had thyroidectomy - it's good to know it worked for you although I believe they often do a "total" nowadays rather than your partial which would mean having to rely on the NHS T4 replacement straight away whereas at least you had 15 years without it .
It's good news that T4 has worked for you as many saying it doesn't which is quite scary if the NHS won't give you access to other (T3) treatment and especially if, like me, you can no longer work due to health and on benefit and so cannot afford private medication/private doctors to prescribe it/private blood tests etc. as where do you go from there - just suffer.
As I said lately I've had a taste of being hypo (when overtreated with Carbimazole for too long without blood tests) and I would not want to really be back there for any length of time - okay I didn't feel it was life threatening like I do when hyper with my Graves (due to how it severely affects my heart) but it is still absoultely debilitating if you have to live in that kind of state - like a "zombie" with no energy, tired/fatigued, depressed etc. it's awful but feel I don't have a choice as Graves could otherwise end my life. Swift access to NHS treatment when it relapses i.e. GP appointments/blood tests and quick access to endocrinologist is just not there when you need it I have found (in my experience and area of country anyway).
I also suffer from acid reflux/GORD as well. That's a pain. I was hospitalised with it in 2014 (before my Graves diagnosis) as it got that bad I couldn't swallow food/drink and had gone 2 weeks without food and couple days with no drink and at point of collapse - ketones in blood were massively high. I still have it now and have to be careful when and what I eat/sleep on 5 pillows as well as having bed head raised up 10 inches. It still causes problems with swallowing - some days worse than others.
As you can probably tell, I am a stress head but unfortunately I don't believe anything would cure me of it - when younger I had tranquillisers, anti-depressants (for stress/anxiety not depression), counselling, hypnotism and nothing made the slightest difference - I think it's the way I'm naturally made. I know it's bad for me and doesn't help any condition and would love to be a chilled person with no worries but can't see it happening in this lifetime!
I hope you continue to be well on Levo - that is what we all want if we go through Graves treatment.
yes current speed of seeing consultants and getting correct blood tests are both completely unacceptable
You clearly can’t continue with Graves’ disease so poorly managed
Have you considered more frequent testing privately
If you decide to go ahead with thyroidectomy (or RAI) you will probably want/need to test full thyroid and vitamin levels at least annually yourself privately
Thousands of members on here do this.
It’s extremely important to maintain GOOD vitamin levels as well as good thyroid levels
Almost any autoimmune disease is likely to result in (or be caused by) low vitamin D
INSIST GP test vitamin D, folate, B12 and ferritin…..or test privately yourself now
Many thyroid patients find they do better on gluten free diet.
Again GP should run coeliac blood test, but if you can’t face the fight …..test privately BEFORE trailing strictly gluten free diet
Assuming you get thyroidectomy or RAI ….and then on levothyroxine
Many Graves’ disease patients find this works for them……but you won’t find them looking for answers on a thyroid forum…..they are off getting on with their life
Tips for making sure levothyroxine works well
Getting levothyroxine dose fine tuned,
always same brand levothyroxine
all four vitamins tested and optimal
trying gluten free diet
Testing correctly, early morning and last dose levothyroxine 24 hours before test
Dose adjustment by Ft4 and Ft3 level, not by TSH
if you are one of the Approx 20% of patients who need T3, then it’s increasingly prescribed on NHS as price has now dropped significantly and still falling further each month …..now £45 per pack (was £268 in 2016)
A private prescription - cost much cheaper than price NHS pays …..typical cost of T3 privately is between £11-15 per month
I don't believe I can continue with my Graves as it is as I don't think I will last very long and each relapse seems to be worse. I've had 3 occurrences now and the last 2 since 2021 so doesn't seem like it will go away. When it does recur I can't get the swift NHS help that I need and it means I can't really have any life as it interferes with it so much.
My endo asked, when diagnosed in 2016, if I had had a virus just before and I did have - less than 2 months before I had a horrible flu virus which could have been swine flu as it was around the end of that outbreak, sweating a lot all the time and feeling very rubbish so I thought he could be right. He said they can often be first triggered by a virus. If as is widely said that stress causes relapses with Graves then I've no chance of avoiding them so RAI or surgery might be my only option unfortunately.
It is very interesting to note that you say it's being prescribed more on NHS - I didn't know that with all information on thyroid websites etc. still mainly saying difficult to get this (usually) unless pay privately. Hope things are changing for the better and that prices will stay down and not increase again at some point. If the NHS is prescribing more because of the price reduction it justs shows how they are not telling the truth to patients because from the reports I have read they said something to the effect that they didn't know if it was effective/safe to prescribe T3 medications. So how come when the price drops they are suddenly finding it is now apparently effective/safe to use more??? It is just all as I thought and found with the NHS - it's not much about patient care - more about cost at every turn.
For instance I have diagnosed swallowing problems - due to dismotility of the oesophagus and also GORD. Will my GP give me alternative versions of my medications such as Levo in liquid form (which is available). No he won't, just told me a few weeks ago it is too expensive and he won't prescribe it. When I said what do I do he said to crush them in water even though the medication instructions and pharmacies say not to. So that is what I have to do as well as for my Carbimazole and Bisoprolol etc. as well.
I had been told T3 medication for a month was costing over £300 not that long ago so it is good news for all if it stays down, especially with inflation as it is. It still would not be easy for me to afford all the testing/meds/vitamins/private doctors (if required) as due to health I can no longer work and so on benefit now for first time in life but I suppose if you are ill and need it then you have to try to find a way - live on baked beans maybe!
Most vitamins are fairly cheap now though if the generic brands will do the same job and don't have to go to Holland & Barrett for them. As long as can be crushed as well as liquid varieties of them can be expensive.
My GP's are always awkward and won't give tests for anything as I have asked before (like when I was struggling to eat with GORD and had been in hospital) for some tests for Vitamin D, Iron and other things but they said unless I had symptoms that pointed to a deficiency they didn't routinely test. They said it was because if anything was found then they would be forced to then treat it! Talk about good patient care and preventing ill health? So I would be forced to pay for everything myself. When I get bloods done for thyroid they don't test for TSH, T4 & T3 everytime - they usually do TSH each time but not always the others especially T3. I have asked for all but they won't and say it's not necessary, when most of us know it is and is why we are not treated properly and are ill.
This is why I don't have much trust in NHS treatment (but sadly have no private medical insurance) as everything is made difficult/no access or very slow and is why I'm in a state trying to figure out what to do and what to say to endo next week. As I said it's a choice between a rock and a hard place really.
Thanks for all your help & advice - I know I sound despondent (I am) but you provide a fantastic forum/help for patients here and it's much appreciated by me as well as all the others.
Yes I thought it strange to be put on this - I've never been on it before as I only have hyperthyroidism (Graves) although to my knowledge I haven't been tested for it and never been told that I have been tested for antibodies or anything. When I was diagnosed in 2016 I don't know what blood tests were done, I was taken into A&E by ambulance from my GP surgery and later in clinic I was asked questions about whether I had had a virus just before, which I had a flu type virus, and they did do examination - feel all around my neck etc. and said it was Graves. I personally think this is right, I don't have any goitre and I don't believe it is Hashimoto's as that usually results in hypothyroid I think and my problems are all thyrotoxicosis related with levels just seem to go up and up, without treatment, but I think probably due to my previous endo overtreating with Carbimazole which made me hypo, that this new one thinks it will stabilise me as I have been all over the place due to it.
He sent a letter to my doctor (and copy to myself) which I have included part of below with his reasoning for putting me on block & replace: -
he said "He is currently on carbimazole 40mg daily. I have just come across his thyroid blood tests (10/5/23). This shows that he has undetectable thyroid hormone with a free T4 of less than 5 pmol/L and raised thyroid stimulating hormone with a TSH of 17 mU/L.
He is on too much carbimazole.
To make sure that he has normal thyroid function as quickly as possible and that it remains stable, I would be grateful if you could put him on a block and replace therapy. This is the safest way of ensuring that he has normal and stable thyroid function.
Please give: carbimazole 40 mg once daily AND levothyroxine 100 micrograms daily."
No, I have never had a coeliac blood test - I wasn't aware of implications of it and thyroid but I can ask about a test. I was told when I was younger that I likely had IBS though and still get some symptoms/flare ups sometimes.
I am not taking any vitamins at the moment. I was 2 - 3 years ago taking Vitamin D3 but I don't know if it was connected but I actually felt worse when taking it so stopped. (Also I know my mother in law was taking high strength vitamin D and it brought her out in a rash on her arms when she took it and so she stopped.)
Also the reasons I do not take others at present is that I have had many "full blood profile" tests done via GP and when taken into A&E over last few years and I have never had anything flagged up as abnormal. At A&E once I did even ask about my potassium levels as an ambulance worker did suggest I might be too high but the doctor showed me on computer screen that my potassium levels were completely normal. Also I have read articles (and seen on TV programmes) that most vitamins aren't needed, apart from Vit D during autumn/winter, as most people get enough from diet and that it can actually be more harmful to take them - just seen few now such as:
So that is why I don't but I can see that it may be helpful to have normal levels for thyroid conditions. So I will ask about getting tested re: the guidelines and see if they will.
I always say IF you are well controlled & stable on carbimazole / or block & replace, you should have option of remaning on it long term.
From the sound out it you’re not doing so well - so the only question is - is this the disease itself or is inappropriate adjustments of treatment a factor?
It might be the 100mcg replacement is too low. Or your FT4 :FT3 balance is off - Most males need more that 100mcg. Or it might be you are still experiencing fluctuations symptoms.
You find out by gathering your results & verifying yourself if your FT4 & FT4 are in range. Doctors often go by TSH.
Once you know that you can know if you should be considering definitive treatment.
Doctors will often explain hypothyroidism is easily treated, & logically those who respond as expected after treatment do not seek help on a forum. A minority do struggle after treatment and have issues as Levothyroxine does not restore thyroid levels. This is often due to GP treating by TSH or poor nutrients affecting conversion to FT3 for example.
All thing you can prepare for & prevent by ensuring a complete test is taken and you have a full picture to base treatment decisions on.
Thanks for your advice and observations. I will ask endo on Tuesday when I see him if I can get any more bloods done before September, although I don't think I will hold my breath though!
I think I have had fluctuating symptoms as I think with going from overactive to underactive (due to overtreatment with ATD) and then back at last blood test (9th June) to borderine overactive, my system has been thrown around like a "rag doll" I feel. At the moment I feel more hyper symptoms but won't know as GP said bloods not re-checked until September (over 3 months from last ones).
The treatment has not been very good since early 2021 with last 2 relapses but I have been stable just on Carbimazole before - especially past episodes when on 20mg only and once been on it long enough to actually be working/stabilised, like maybe around 8 weeks after starting, because until then I still have symptoms with heart and many others - even with the Bisoprolol.
This time though it was worse and put on 40mg and felt very ill and 2.5mg Bisoprolol was nowhere near enough but they just left me on same dose that I had always been on before. Then in over 3 months nobody bothered to monitor me or do blood tests or anything so I had to complain in May when I realised I was getting hypo symptoms so they then did a blood test, found I was hypo (as well as abnormally low white blood neutrphils count) and so GP stopped the Carbimazole and got endo to look at bloods who then said in a letter I was on too much Carbimazole (fairly obvious) and needed Block & Replace to stabilise me which I had not had ever before. So been on this around a month since 6th June but had to have repeat bloods done on 9th June. These showed that my neutrophil count was just inside low end of normal range which still concerns me now I am back on 40mg Carbimazole as think it could be now be lowering this count again as it did before. I was only off Carbimazole for about 2 weeks. It also showed I was now borderline hyperthyroid which amazed me in that in only 2 weeks off Carbimazole and 3 days only on Block & Replace that I had gone from what I believe was well hypo/underactive to borderline overactive again - so all over the place really and that's how I still feel still at the moment - not stable.
However the issue for me all along is when they stop the medication and am in remission that is the danger time for me when I am more on edge - which obviously is not probably helping me maintain a healthy remission state as I am concerned and looking for any sign that I might be going overactive again. But I don't get too many subtle signs - I do tend to sweat quite a bit and suffer with heat intolerance anyway - always have and first I usually know about it is the rapid heart rate starts, chest pains and hand tremors and then it is too late as rapid access to get back on medication is not possible. I have complained to my GP but one I saw was very abrupt, and over defensive I thought, and just said that's how it is and to get used to it.
So all in all I could be anything like 4, 5 even 6 weeks to get it all sorted between initial GP appointment (examination) to booking blood appointment, then waiting for blood results (I've just looked and was shocked that in May it took 14 days to actually get my blood results from GP). Then one time GP said I had to go back in to see him where he issued my Bisoprolol and said he would write for "advice" from endo as to what to do and then a week later after that I could have my AT drug prescription. This timescale would be fine with me if it was just say the sweats, feeling tired/fatigue, insomnia, digestive disturbance and all the rest as I can put up with that for a few weeks but the heart issues and breathlessness/chest pain is not as I am at point of collapse but they don't seem to make any allowances and everything just runs at the same snails pace.
Having said that they would usually have to turn it around very fast so maybe wouldn't usually be possible anyway as I can't usually even get to hospital myself - it's ambulance time and I feel that ill that it just feels like I am going to die - so completely terrifying. Been took in this way 4 times now I think it is, and I can see why it is said with Graves that your levels just keep rising and can be life threatening. Apart from that it is no life and too stressful to keep going through that all the time as last time was only in remission 4 months and then back in A&E again. Also I don't think every time I get a subtle sign I may be going overactive that I can just take myself off to GP or A&E as I may be wrong and nothing to see and it is wasting their time which I can see and completely agree - they wouldn't like that (it's busy enough in our A&E with longest wait times in the country as it is).
If my symptoms weren't so severe and didn't involve me feeling that I was going to have a heart attack, I would probably choose to stay on the AT drugs all the time, even with the risk of some bad side effects, but as it is I don't really know that I can - I think about it all the time, stresses me out but I don't see how being like this I would ever get fast enough treatment - even in A&E as still waiting a long time before you get bloods done etc. and back on some medication.
I do know I have a bad decision to make whichever option I decide but I know I won't get any help or much time to discuss them and implications with endo at my appointment on Tuesday - it will just be RAI or surgery - which one do you want?
Thank you for your help PurpleNails, much appreciated,
I try and write as honestly as possible and this was ' just my experience ' and it may not be yours and please remember people who are well, are not on any forums trying to effect change or attempting to help and advise others - but getting on with their lives.
So you must accept that there are many hundreds / thousands of people who have Graves and been through surgery or RAI and are perfectly well and able to stay well on T4 monotherapy.
However, since first coming on here in around 2016 looking for answers as to my worsening health since RAI thyroid ablation we now do have research detailing that RAI offers the worst QOL outcome so in some ways I feel vindicated / validated - though sadly not through my primary care or hospital - and having further knowledge has now found me self medicating.
and Professor Toft suggesting for Graves - long term Anti Thyroid drugs :
But if you can't tolerate the AT drugs, and your Graves still ' raging ' and out of control there will be those who need invasive surgery and a thyroidectomy is a much cleaner, more precise treatment option and we can support you through the ' other side ' :
but yes - it does feel like you are between a rock and a hard place - neither option is without risk but if you can't get comfortable on the AT drug or Block and Replace - we are all out of options and something has " gotta give " .
Graves is poorly understood and badly treated auto immune disease and your lack of treatment and follow up appointments is disconcerting which only stresses you out more and compounding your health issues and concerns.
There is no cure for an auto immune disease and quite why your immune system has decided to turn on itself and attack your body rather than defend it is the 64 million $ question ?
Generally speaking there is a genetic predisposition and whilst everybody's journey with Graves is unique to them, stress and anxiety would appear to be common triggers.
To offer more considered opinion we really do need to see some blood test readings as mentioned above by PurpleNails :
I would also suggest you ask for your core strength vitamins and minerals to be run as whether hypo or hyper - your metabolism is running too fast or too slow and your body will be struggling to extract essential key nutrients through your food and non optimal levels of ferritin, folate, B12 and vitamin D will compound your health issues even further.
Are you aware of the Carbimazole upsetting you - maybe PTU might suit you better ?
I only learnt of my situation back to front - 10 years too late for me - but had i had the choice the AT drug would have been my first long term treatment option, as I was very well on the Carbimazole.
I'm afraid the NHS is cash and time poor - and guidelines within the system dictate what treatment is deemed appropriate - and endocrinologists work to guidelines and doctors liaise with endos as to the way forward with each patient.
Yes I do agree and can appreciate many are fine after treatment and I realise no treatment is perfect - all have complications but would expect that the NHS would at least support people with additional treatments/medications. But 20% or more have issues with T4 medication not working well.
SlowDragon has informed me it is prescribed more now on NHS due to lower drug prices, which I didn't know, as long as prices stay that way. As I said though, what happened to the NHS saying they did not know whether these drugs were effective/safe as the reason behind them not prescribing. Dropping in price now makes them safe/effective does it?? It was about cost all along!
I was fine on Carbimazole mainly 20mg for two 18 month periods and once it had time to work it stabilised me. It seems now on 40mg dose it pushed my white blood cell count right down to just over 1.7 which is abnormal (ref range is 2.0 - 7.7) so I had to stop it for a period then retested and increased to 2.21 so restarted on block/replace and back on 40mg again with no more bloods till Sept. This worries me with risk of Agranulocytosis.
Apart from this I am okay on the AT medication and would rather stay on it than have RAI/surgery but the main problem is getting access to treatment again fast enough when in remission and it flares up again. Obviously my medication is taken away and it can take 4 or 5 weeks to get back on it via GP and then endo but most times, especially lately, I would just end up in A&E as it is so severe. If I had fast access to blood tests and medication again it maybe would be okay but everything, I find, with the NHS is sooo sloooow .......... (and that was even well before the pandemic). Even my local A&E, who I don't want to knock as the A&E staff there do their best in very difficult circumstances under massive pressure, but are short staffed. My last relapse in Feb I waited over 18 hours from Sat afternoon until nearly Sunday lunchtime to get blood tests and medication prescribed. I know that may sound quick but not when you are in a severe state. You never want to be there again - that ill and it feels life threatening in worst relapses.
I believe it is right that stress/anxiety are probable triggers for Graves Disease especially relapses. I think my Graves Disease could initially have been a virus that caused it but stress has a big part to play with relapses I think. I am a stress type and always have been and don't think anything will change that unfortunately, even though I damn wish I was relaxed/chilled out. So I am probably totally doomed with Graves and likely destined for many relapses if I stay AT drugs.
I'm stressed now trying to work out what to say and what to decide when I see endo on Tuesday - with time running down I know I need to decide something and he will want me to take treatment but knowing what to do is another matter. It seems a rubbish choice of either:
(1) stick with Graves which is severe for me with effects on heart and is possibly life threatening when relapses happen - although stable if on well monitored treatment but worry of relapses and poor/no life. Also me being stress head means plenty of future relapses on the way so more regular A&E "holidays" trying to get treatment. (I could turn it into a fun day out and take a flask of tea and sandwiches with me - it's as near as I get to one these days!)
(2) have RAI - which has longer term risks/complications - risk of TED, cancers and pulmonary problems etc.
(3) thyroid removal - surgery risks as well as known complications
Then also with RAI/thyroidectomy the 1 in 5 or so chance that T4 doesn't work and NHS won't prescribe T3 so end up in debilitated hypothyroid state all the time.
You said about the blood readings but the problem with them is that I only have the last 2 from May and June this year as I never thought about getting any before this. When I was diagnosed very overactive again in February that was via A&E, not GP, and didn't get those but the May thyroid blood readings only show that I was underactive/hypo as I was overprescribed too much Carbimazole - so not caused by my Graves Disease.
These readings were: TSH 17 mu/L [ ref 0.35 - 4.7] and free T4 less than 5.0 pmol/L [7.8 - 21.0] or undetectable. (T3 not done) but caused by medication.
The June reading is also not representative of my Graves as this was after being overprescribed Carbimazole above then stopping Carbimazole just 2 weeks before this blood test but re-starting medication but on block & replace (40mg Carbimazole/100mcg Levo) just 3 days before the blood test so was all over the place and these blood results showed that I was just borderline overactive apparently - these were:
but as I say not representative really as the medication mistakes have thrown me all over the place and as endo says just trying to get me stabilised. Going from severe overactive in Feb, it felt like I was on a rollercoaster (but not recommended for fun).
I can try and ask for vitamin tests but when I've asked GP's before due to diagnosed swallowing issues and couldn't eat (admitted to hospital with for a time) then mainly liquids for couple years, they said they don't do routine tests unless got symptoms pointing to deficiencies. When I asked why (preventative care and all that) GP said "if we test and find anything then we have to treat it!" You couldn't make it up!
As I said in earlier post they won't even give me other versions of tablets like liquid levo that I can swallow as GP says its too expensive and to crush them. Manufacturers medication leaflet and chemist say not to crush any of my tablets (Levo/carbimazole/bisporolol) but I have no choice.
It wouldn't be possible to regularly pay privately for stuff as I don't work due to health now and on benefit (I am not at retirement age) so that's another reason I am reluctant to have any of the treatments as if I do end up with T4 issues and NHS won't give me anything else - then what do I do? NHS haven't exactly been helpful with things I have needed in past, so why would I think any different this time? I also do listen to experiences of others, like you, who say having RAI was the worst thing they ever did/wish they never had it. It's brilliant/encouraging when people say it has worked for them, some have replied to me saying this and you think well maybe it could, but then I think with my luck (or lack of) there is also a large chance it won't or only for a short time.
It's good to know that you were able to treat yourself and find your way in the end, with help, and are able to pay privately for what you need. The NHS should not turn a blind eye to lifelong suffering. If NHS policy is changing you might be able to get it prescribed in future?
It's brilliant that you help others with your experience and advice. Thank you.
Seems to me the problem in the past was being asked / forced to come off carbimazole completely when you were stable and doing ok on it ...rather than being allowed to try staying on low dose for a much longer term.
(there are studies showing long term low dose can sometimes be ok /safe, and it actually gives a better chance of sustained remission eventually .. some people do stay on low dose carbimazole or block and replace for many years... even though Endocrinologist's never seem to mention this option to anyone )
If i was you i would let them try to get you stable on Block and Replace .. hopefully they find a dose where you feel ok and which keeps T4/T3 in range .... and then if thye manage it ....don't agree to letting them take you off it , and kick up a huge stink if they try to .
They can't force you to have either RAI or Surgery unless / until you want to .
and if you don't have either of them , they are forced to continue dealing with you as a Graves patient with a history of repeated relapse when taken off carbimazole
..... so you'd have a pretty strong argument at that point for being allowed to stay on it for longer , (because you are so likely to relapse again if you come off).
and apparently ( in one of those papers mentioned earlier in this post i think) the risks of agranulo~ whatsit happening are greater if they keep starting and stopping carbimazole .. so again~ asking to stay on it for a longer term if you are stable is not such a dangerous option as them doing start /stop / start / stop.
Yes my previous endo said 18 months was the maximum they would keep me on it, if in remission by then, but it hasn't been well controlled and last time was only in remission 4 months before relapse again.
But this year, due to all problems and lack of care (blood tests, monitoring, appointments) leading to me going very hypo, I asked to have a different endo (that I had read was a decent one).
Just last Tuesday I saw him and seems much better/very good and actually gives a damn about patients! I am on block & replace since last month - trying to get me stable as don't feel that well at the minute. As my GP practice are pretty useless and don't often tell me when I am due bloods (and my endo said he knows this GP group and said he couldn't say too much but knows they aren't really the best - I think he was saying they're total "rubbish") my endo said so that it doesn't happen again, I can go in to get blood tests via him at hospital every 3 months so had a blood test whilst there at appointment. He said his aim was to stabilise and then just go back to Carbimazole and stay on medication for at least 18 months (altogether with the B&R) and then see where we are.
He also listens and doesn't just prescribe NHS guidelines as he said he would not push me into any treatment I didn't want (like the NHS do to get patients off treatment/clinics and back to GP) and said there was now evidence that RAI was not always providing good outcomes especially for younger patients with more than about 20 years average lifespan left, although said it can be a treatment option for older patients (maybe who can't/don't want to risk surgery).
He is the only endo that actually told me I had actually had antibody test for Graves which confirmed my diagnosis. He did say the test showed high antibodies of in the high 7. something range whereas usual is 1. something (I'm not sure exactly which test it was) which he said showed my Graves is severe and would unfortunately be unlikely to stabilise for long, would tend to be up and down all the time with recurring/relapsing Graves. He said if I was to consider treatment he thought surgery would be better for me and had good endo surgeons in the hospital but it was my choice. Will give me more information on it in future should I want it.
Yes he told me risks of liver injury/agranulo is quite rare - agranulo can be up to around 5 per thousand people but very serious so is a worry. In May my neutrophil count was abnormal around 1.7 (said not considered a problem unless it is less than 1) and said this was likely not due to medication as Graves in itself can often cause lowered immunity (neutrophils) anyway.
So I suppose the risks are balancing those of staying on the medication with coming off it as you say and relapsing, which are high and severe for me with effect on heart or alternatively surgery risks and afterward hoping they can get the medication right as I now know how crap being hypo feels.
Thanks for all your words of advice. Much appreciated.
You have a clear understanding of the situation and one suggestion is to copy the research paper regarding long term AT drugs for your endocrinologist and ask if s/he will be able to support you with this treatment choice.
Endos work to hospital guidelines and if the hospital are trying to reduce O/P waiting list times and fast tracking patients with suggestions of invasive treatment options or not with the skillset within the department to support long term AT drug treatment - you could ask for a referral to a different hospital - but whether that will be any different in its treatment options is an unknown.
With your metabolism running too fast and too slow - it is a roller coaster of events with your body going through heightened levels of symptoms and extremes and you can't sustain this stopping and starting of AT drugs indefinitely.
It's likely your vitamins and minerals have nosedived through the ranges and we need a strong core strength to carry us through this difficult phase of the disease and the endo should be able to run your ferritin, folate, B12 and vitamin D levels as if these are low they will be compounding your health issues making the endo's job more difficult.
I wouldn't consider RAI - the evidence is now there and I think, with time, this treatment option will slowly disappear as a treatment option for Graves Disease.
As for treatment post thyroidectomy, it does appear currently to be a post code lottery but if and when, then we do have this amazing forum and members who have been there before and have managed to get to better health through the support and advice freely offered on this forum.
You've come to the right place for support. I don't have Graves but there are members on the forum that do have it. The experience and knowledge here is extensive.
If you have any current thyroid blood test results start a new post with them and others will make suggestions to help you.
One thing that you said about 'having arms that weak you can't lift them above your head' jumped right out at me. When I had vitamin D deficiency I had the same symptom (amongst others) very weak arm muscles and I couldn't raise them above my head at all they were too sore and muscles very weak. They were also painful. Daily headaches too.
As SlowDragon has said you need good vitamin levels.
Yes the forum is very good as unfortunately the NHS is not good with support/care I find like many.
Yes optimum vitamin levels are important but difficult to get my GP practice, who a large national company, to do anything as it's all about saving money not preventative care. They won't routinely test unless have unequivocal symptoms which they'll say is down to Graves - like weak muscles/tiredness/fatigue - even though I was found to have severe Vit D deficiency a few years back and was on 40 liquid drops per day for quite some time but doubt that will make a difference - they won't even give me medications in liquid or form I can take as have diagnosed swallowing problems - say it's too expensive and tell me to crush it even though pharmacy and instructions say not to?
First thing is, do you have any actual blood test results?
if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
I was “pushed” into RAI before knowing anything about thyroid problems, a decision I deeply regret. I wasn’t diagnosed with Graves, in fact, I wasn’t diagnosed with any autoimmune condition, not because I didn’t necessarily have them but they were never tested. About six months in, the pressure started for definitive treatment and I succumbed. I have had no help from NHS and am now seeing an Endo privately and paying for my own T3.
By the way, PROPRANOLOL is the best beta blocker for hyperthyroidism not Bisoprolol. Bisoprolol did not work for me and I ended up in Hospital with heart failure and congested lungs simply because my then GP , after I had told him I was suffering all the known side effects of the drug just said “well, you’ll just have to keep taking them”. If he had bothered to check by BP and HR he would have known they weren’t doing the job they were intended for but once on Propranolol after my stay in Hospital, HR and BP were controlled and was weaned off them after my first Endo appointment because my BP and HR had dropped way too low. Please ask your doctor if you can change to Propranolol as it’s known to work well for overactive thyroid. DO NOT BE PUSHED INTO RAI. If you cannot get stable on thyroid “meds”, thyroidectomy is a far cleaner option and you doctor will know for certain that you have no thyroid unlike after RAI. They just don’t understand the effect of RAI. Understandable as it takes a different amount of time before your thyroid is completely disabled according to your particular circumstances. I was clinically hypo 6 weeks after RAI but made to wait 12 weeks when my TSH was high and FT3/FT4 were very low.
Get copies of all your thyroid blood test results and post them here for comment. You may well have to do your own private blood tests to get a true picture as it appears your Endo department is failing you.
I feel for you as I have had poor treatment via the NHS. It's a scandal how they push people into it even when it necessarily in your best interests, especially nowadays knowing the problems/complications with it. My new NHS endo that I saw last Tuesday seems better and said he would not push RAI or anything I did not want and he didn't believe it was the best option nowadays. He even said that is however what the NHS want you to have as first line treatment as it is cheaper, easier and takes you out of NHS care and back to GP care mainly.
My cousin didn't know anything about it and also had RAI as she believed what she was told by the endo - like me she was given no information. She has had a few problems with neck rashes (and so has her partner) and strange cysts appearing on her torso since although she says she has been okay on Levothyroxine up to now. Even before this I decided to look into it rather than just accept at face value - you could say I'm skeptical - I've had years of bad experiences with the NHS with my mother and father - believe me they are not all there for the right reasons. I swear that one male consultant, probaly 5 or 6 years ago, told me in front of my mother/father, when mother was in a wheelchair and considering undergoing an operation and discussing complications, that if anything did go wrong and she died due to them it would be better for me as less of a burden! He wasn't even joking and I was disgusted and needless to say my mother never had any operation - he scared her to death.
It's terrible that you have to pay privately - we have all paid our taxes for it and shouldn't have to pay further. This puts me off having treatment but my Graves is very severe. I knew this but the other day at my appointment with new endo I found out for first time that I had previously tested positive for Graves with high level of antibodies, so he said I would likely always need medication and if not would likely relapse frequently as my levels would be up and down all the time. With the effects on heart being severe I may have no real option though and may have to opt for treatment but wouldn't want RAI but need to get head around operation and then hypo. I don't really want that as I've never had an operation and read about all the complications and I hear so many stories like yours with no NHS help afterwards (even though continuing hypo symptoms) but alternative is to more or less remain on lifelong AT drugs with risks of side effects of those and I have been on them a few years now already.
I didn't know that about Propranolol - I've always been on Bisoprolol from the start - I don't know why as they knew all along my worst/most severe symptoms were on my heart. Will have to find out about that. Thanks for letting me know.
Thanks for all your help and advice - it's appreciated.
When I had Graves back in 2012 I was always being told - from about my second endo visit - that should I not stay in remission I would be given RAI. I always said that I definitely didn’t want it. The various different endos I saw came up with everything fr9m one holding up her thumb and finger to show me how small the pill was to another telling me I wouldn’t become hypo! Regardless I was signed off with the threat of RAI hanging over me. I saw my GP and asked could I be forced to have RAI - answer was No, then if I refused their treatment could the hospital refuse to treat me and the answer was No again. So I relaxed with the threat of that having been removed.
I was always very well when taking levothyroxine- I was being treated by block and replace - 40mg carbimazole daily with levothyroxine- I was taking 100/125 daily before it was all stopped. I did find it took a while for my body to get back to my new normal - I had been undiagnosed (well looked on as a hypochondriac/ menopausal woman - for a long time before I was finally diagnosed- in fact one stupid GP even told me I was ‘needing my holiday’!
I think it is really important that you get a hold of all your thyroid test results. If you live in the U.K. you are legally entitled to have them so go for it. I used mine to core.ate how I was feeling to what my blood tests were and how I was feeling. That proved to be very useful.
Funnily enough although I came from a family riddled with heart problems - my father had his fourth and final heart attack at 52 and my heart pounded like mad plus I couldn’t take beta blockers because I have asthma - I never ever thought I might have a heart attack.
In the end I ordered home fingerprick blood tests and tested everything for myself - I mean they were talking about RAI and I hadn’t even had my T3 checked! Not my vitamins and minerals!! So I gave up on my doctors and bought a big test that did all that and more. I went totally gluten free about ten years ago, I didn’t test first but I wouldn’t go back to eating gluten just to test a) because cooking and eating gluten free is fairly easy and b) my IBS had improved a lot now that I’m on GF but it’s a good idea to check if you are coeliac although some people are non coeliac gluten intolerant.
Before you see your consultant I would read the article about staying on block and replace for much longer periods of time, print it off and take it with you to prove your point. In fact I would do a bit of research and find more evidence of people staying on AT drugs long term.
Also think about what you would like to happen and have good reasons for not wanting to have RAI.
I said I didn’t want to become hypo - like you I became hypo during my treatment and I always say hyper is hell but hypo is no fun at all.
Anyway I told them I didn’t want to become hypo hence the stupid comments - my main reason for that was that I felt very well on carbimazole / levothyroxine and I didn’t feel I could rely on my doctors to be able or willing to treat me to a level that I would always feel well - I didn’t feel that should I need it getting treated with T3 would be very difficult.
I always felt it was important to be a partner in my treatment so that it wasn’t just something that was done to me.
You are so stressed and worried though - probably because you have Graves but the anxiety won’t be helping you either. I know it’s easy to say but I would try and find a way to help yourself relax - see Leighshe’s comments above. In my case even though I was practically on my knees I kept going to my gym - it was a very gentle supervised class for medical referrals - I turned everything down and mainly went for the company of a lovely group of people a lot of whom had much worse health problems than I had.
I also kept doing my Pilates - teacher is a physio so she adapted everything to suit my condition and it was all mat-workn. I was just determined Graves wasn’t going to rob me of the things I enjoyed. I was very weak though as you know.
Funnily enough although I came from a family with heart problems - father had his fourth and final heart attack at 52 and my heart pounded like mad - I couldn’t take beta blockers because I have asthma - I never ever thought I might have a heart attack.
PS - could you get referred to a different endo / hospital? If you send them an email ThyroidUK thyroiduk.org have a list of thyroid patient friendly doctors.
Yes that’s similar to what was said to me when diagnosed 2016 as RAI was always pushed most/first and told was easiest and what most people had, surgery was only very briefly mentioned as an option. Just given NHS standard leaflet on RAI but no other information. Told I would be on Carbimazole for up to 18 months after which they would hope I would be in remission but if went overactive again would need treatment. Was told it was a risk remaining on medication long term due to risk of serious side effects.
I felt okay on Carbimazole, once controlled after couple months or so. Don’t feel brilliant now on block/replace but only been on it for about 5/6 weeks and had a rollercoaster ride from total hyper to over medicated so well hypo I believe and at last bloods in June I was borderline hyper again. New endo hoping to stabilise me on B&R as he says it is easiest way to do this. I still feel tired/fatigued/weak muscles a lot whilst still having some hyper symptoms like palpitations, not sleeping for long at night, sweating, anxious etc. Although not like when full hyper before.
Yes I will try and get my thyroid test results from now as before I didn’t realise the importance and just used to go by what they told me. I now know this is a mistake. It may be difficult now though as I am to get my bloods done at hospital endo dept now and not by GP so don’t think they will be available in my GP online account as they won’t have requested them. The trouble is although my new consultant seems good, his secretary is terrible (seems a right dragon to be honest) when I have rung her a couple of times and can’t see her liking the idea of sending me blood test results out.
I think everybody gets differing symptoms, with hyper or hypo and some affect some people worse than others. Some people complain of bad headaches whereas I don’t get those. The worst symptoms for me are with my heart as when badly overactive it is terrifying - with it totally racing out of control - I can’t even count/time the beats, stabbing chest pains, struggling to breathe, sweating profusely etc. and coming on quite suddenly - it really is no joke - very worrying and feels like you are about to die. Other symptoms are bad such as tired/weak muscles - even frequent muscles pulls such as calves if walking, insomnia, anxiety, digestive but not as bad. Also I had a taste of being hypo lately with over medication and whilst that’s not good at all - in fact made me feel like a pile of crap, I did not feel terrified or that I was going to die at any time so for me it was not as bad as hyper which I am far more worried about. Equally I wouldn’t want a lifetime of suffering hypo symptoms either without adequate treatment. But I have read that some people have had both and feel worse being hypo - so it’s how bad you suffer from it/how severe and what particular symptoms you get as not everybody gets all of them. I agree with you when you said “hyper is hell but hypo is no fun at all.”
Anything severe is no joke and my new endo said my Graves is severe as my antibodies when tested were very high. I wasn’t even told before this that I had been tested (I still don’t know when it was tested) but he said I had and it confirms severe Graves. He said due to this it is highly unlikely that I will remain in remission for long and will always have relapses as many levels will fluctuate wildly. This information scares me to hell as I never want to relapse again. He does listen though and said he would never push me into treatment I don’t want - he said he isn’t a big believer in RAI anyway as new evidence was being presented that many people don’t do well on it but he said the NHS wants them to prescribe it as it is less cost, gets patients off waiting lists and back to their GP so less of a problem. However with this information I can’t see how I will ever have a life with Graves as it is and so may have to decide on treatment. My endo did say if I did ever want further information on surgery, he could provide it and said there were good endo surgeons in my local hospital. But difficult decision to make. Never had an operation but seen other family members have poor treatment from NHS and also my father go through it operations with complications, so not real good especially as I have some other conditions that affect my day to day life. Just don’t want more complications.
My GP’s aren’t good and will only order tests as they see fit (all about cost). I know vitamins should be optimal but I can’t regularly pay for private ones like some do as I can’t work and on small amount benefits and I am nowhere near state pension age. I have changed GP a number of times in my life - from memory had at least 6 or more in my local area but to be honest there is not much difference and one of the top ranked ones in my area, I used to have as my GP as well as my mother and was not good at all. I think many are the same now especially in my area where there is apparently a lack of them as they don’t want to work here. Not leafy or posh enough for them - they would rather live/work in Kent or Royal Leamington Spa!
I have never tried a gluten free diet although I was diagnosed with IBS when I was around 20 years old. I also imagine it’s quite expensive when you see that aisle in the supermarket and although I know you can’t put a price on health - it’s whether you can afford it all the time. My health has kyboshed my work and retirement really so I do not have what I had hoped to have and eventually retire on as had to give it up early.
Yes I am a stressed type anyway and Graves just multiplies that by 100. When hyper you get ultra stressed/anxious/panicky. It’s pretty awful. But I can’t see that will ever change much with me as seems to be how I am made - although some activities, certainly whilst you’re doing them, takes your mind away from it and helps a bit. I am not really a gym person now. Gardening is good for me and enjoy it but lately felt too ill/tired/weak to do much at all. I can see how group activities would be good for some - like exercise, yoga, pilates, dance etc. but think as a male it would feel like I shouldn’t be there - as I think the vast majority in these classes would be female as they usually seem to be on TV but then again I’m not into fishing, DIY or football/sport much - more typical male activities.
Thanks for your reply, advice and information. Very much appreciated.
I had a partial thyroidectomy in my teens and didn’t need any replacement meds for around 30 years, then 20 years ago Graves came back with a vengeance and was a nightmare so I asked for RAI and honestly it was the best decision, no problems with the procedure and I’ve been well on Levo since so just because a few on the forum didn’t do so well you have to remember that many many thousands are well and off living a normal life.
My sister had a total thyroidectomy in her teens and not had a single problem since, she’s now in her 60s and has a crazy busy life.
I should add that my sister in law had a total thyroidectomy plus chemo for thyroid cancer. She was in her early twenties - she is almost 70 now - and she had just had her second child. She went on to study for a maths degree, worked full time as a teacher and leads such an active life it puts me to shame - sailing, rock climbing, hill walking, camping - you name it, she does it. She’s constantly on the go with bags of energy and strength. So there can be a life without a thyroid although I have to say I think I’d prefer a TT to RAI.
I'm glad it's worked out well for you even though you had to have the surgery and RAI as well. Levo must have been okay for you and didn't need T3. Also for your sister. At least you have both been lucky.
Unfortunately I don't fancy either (who does beforehand) but I can't really remain on AT medication I don't think - not because I haven't been fairly okay on Carbimazole once on it a couple of months or so but due to terrible relapses when I come off it that seem to only get worse - sometimes fear for my life.
The thing that is a worry for me, apart from complications, is that I may not do well on Levo as my new endo has started me on block/replace (40mg/100mcg) since early June and not doing as well as just on a dose of AT medication alone. It may not be long enough to know yet but I constantly feel tired/weak/fatigued real bad a lot of the time. In a morning I can't even do anything much. So thinking that might be due to the Levo not working too well for me. Okay I felt a bit tired even on AT and didn't sleep that well but this is worse for absolute weak muscles/fatigue/tiredness a lot of the time. So this puts me off treatment although I might need a month or two longer to know for sure as over medication with AT sent me hypo a couple of months ago then a month or so later I was borderline hyper again so on a bit of a rollercoaster really.
My new endo that I have seen recently seems quite good and said whatever I choose is up to me but said he doesn't believe RAI is always the best treatment unless you are elderly and didn't/couldn't go through surgery (whereas I'm middle aged). He said due to level of my antibodies I have severe condition which won't really settle down - will always relapse and could consider surgery if I want. Worried though that complications can include things with throat such as trouble with swallowing/chewing if it affects one of the nerves - as I already have diagnosed conditions which cause me problems with swallowing so I don't really want this to worsen further and not be able to eat at all so is a lot to consider.
Thanks for your reply and hope your health remains good in the coming years.
I also tried block and replace and it didn’t work, I felt awful and the constant changing doses of one or other wasn’t helping so that’s why I asked for RAI. I wouldn’t assume it’s the Levo that’s causing you problems. I wasn’t ok on block and replace but am on Levo.
It seems you have a difficult choice to make, none of them are ideal for you but you need to do something as the serious relapses can’t go on. Only you can make the decision.
Hello there,I am so sorry to here if your inadequate treatment and terrible experience of Graves disease. I am with Graves since 2018 and tried both carbimazole only and block and replace to achieve remission. I never got remission and had enough of feeling awful so had a thyroidectomy last June.It was my choice, which I think is important, and I found out all the facts,pros and cons etc.I don't regret it at all,but has my life been perfect since.No.But it has been better.I am having problems converting T4 to T3 at the moment so am about to ask my endo for a trial of T3 on the NHS.When he rings me that is.I had bloods done 5th June and am still waiting for him to contact me.The service is collapsing isn't it?If you would like to read my experience I have kept my profile updated,just click on the picture at the side of my name and there it is.I got to much the same stage as you and had had enough,but only you can make the decision about what's best for you.If you can stretch your budget the cheapest private bloods for the 3 thyroid hormones cost me about 27 pounds last time and that is something I have had to do all along.Wishing you the best of luck.
Unfortunately the NHS does seem to be in a right old state of collapse - worst I've known in my lifetime. GP's are mainly hopeless and endo's as well until I changed recently to new one. Seen him once and he does seem better than all the others - actually listens to you.
I like you am having trouble staying in remission - very ill when relapse so not sure I can stay on medication even though I don't fancy the other options at all really. Just want my life back. Like someone else on here said "hyper is hell but hypo is definitely no fun either."
My new endo said it is my choice what I decide to do (which is good as all the others pushed me towards RAI). He is the only one that has told me since 2016 that I have high level of antibodies indicating my Graves is severe and will likely never enable me to get into remission for long before my levels skyrocket again. I don't think it is safe to remain on AT meds all the time and my white blood count was also abnormal and took off them then 2 weeks later back on them after increased slightly (just over low end of normal). Worried about this but said they cannot keep retesting as they can be up and down with Graves anyway and not due to medication but as long as not under 1 but how would I know as they don't test it.
But am worried about all complications with treatment and the fact that I may not do well on Levo. On block/replace at moment for first time and bisoprolol beta blocker but feel tired/weak/fatigued on this so thinking the Levo might not be working well for me and don't really want all the trouble trying to get T3 on NHS (as often won't supply it) and I can't work now so can't afford to pay myself. I can't believe you have to pay for some of your own bloods - they should all be available on the NHS - you need to know what is going on after you have had surgery.
I see you are having problems with conversion and read your history from your profile although I'm glad overall you are still pleased you had the thyroidectomy and has been some improvement for you. It seemed a bit of a rocky road back after it though. Reading all the complications puts you off as well. I read you want a surgeon who does at least 25 of them a year as statistically these have the least chance of complications - I suppose practice makes perfect.
I know I can't really continue as I am - relapsing - and probably won't last very long but you just want to know that if you do go through surgery that you are actually going to be better and still not ill or having problems as I've had enough.
I hope you continue to improve and get your conversion problems sorted. We just need to get back to some sort of normality and not be feeling ill/terrible half the time.
Hello again AllButBroken,I have finally heard from my endo,but by letter,so I haven't had the opportunity to ask him about a trial of T3 on NHS.He has advised a tweak of dose(a reduction three days a week).Obviously didn't get chance to tell him I'd already dropped dose when I got my own bloods.God knows how I would have felt if I'd continued to be overmedicated all this time.I have decided to give new dose a chance and retest in 6 weeks.I feel better but conversion problem is still in the back of my mind. I can see you have a difficult decision to make.I had just had enough.It was the migraines that got me.I couldn't have RAI as I have thyroid eye disease so I only had one choice really.The surgeon local to me I had already had dealings with 10 years ago , when my son had to have a biopsy for a lump on his neck ,and also a friend of mine had her carotid gland removed by him a few years ago.I didn't find out how many thyroid ops he had done but he is probably in his late 50's so I presumed experience.I still take proprananol to prevent migraines and it also helps my continued jitteriness.I still say no regrets.I feel better but not perfect and had realistic expectations.Can you really expect to feel exactly the same when you've had a major organ removed and take synthetic hormones?I just knew I couldn't carry on knowing this would be my way of life for the foreseeable future.Get as much info as you can,and be as happy as you can be with the decision you make.I am trying all possible things to help my conversion in the meantime. Wishing you the best of luck.
hi. I had severe graves. Did 3 years of it. Finally my life quality got so low I did a full thyroidectomy. That was 7 months ago. I went into NDT and it’s been onwards and upwards from there. There are success stories and I like to think I am one of them. You are, I feel, at a cross roads of choices. Get informed and make the decision u feel will best suit u
Thank you for your reply. Sorry it's been a while since your post but I am not well with Graves and lately my partner has not been well (not thyroid related) but GP told her to go straight to our hospital A&E/ED the other night and had a very long wait as our system is on verge of collapse now in the UK. Last time I was in there in February I was even longer 18 hours. I see though you are from New Zealand and your healthcare will likely be better than ours although I can see you have had many problems with it so I'm not sure - the Dr's just don't seem to listen or care half the time do they and here you wait forever for appointments on NHS (although if you can afford to pay privately you can often see the same Dr. in 2 to 3 days).
I don't know whether you are originally from NZ, or elsewhere, or emigrated from UK with your husband as I saw he is from UK. New Zealand looks such a nice chilled and stunningly beautiful country though. I've never been but from what I've seen on many TV programmes looks such a lovely way of life there and so much countryside.
I read your profile and you've been through hell - with yourself and your family - a terrible time for you all. It's good to see a thyroidectomy has been better for you than on AT drugs although I appreciate you have not done well with Levo and had to pay privately for NDT. It's a scandal how they can leave people suffering, like here on the NHS how they won't fund it, mainly due to cost here I believe. But at least you're slowly getting there now - seems like you have been through the worst and can only get better.
Yes I am at a major cross roads and stumped to be honest as to what to do next. I also have severe Graves since 2016, I can't work anymore for first time in life due to health and on out of work benefit. My new endo I just saw nearly two weeks ago, told me my Graves antibodies are very high which he says is severe and am unlikely to ever achieve remission for long. Last time didn't get 4 months and back in A&E again. So when I have been on Carbimazole for about 3 months, I am fairly okay on it and don't seem to have major side effects but when I relapse I am in absolute hell - mainly with what it does to my heart as scared it will damage it or kill me.
Although just lately, probably due to Carbimazole my neutrophils were also at 1.7 like you (lower ref range is 2) so abnormal although wasn't ill but they stopped medication for couple weeks then retested and was 2.2 so restarted and been on it a while now. They say okay until it gets down to 1. Worried that it could be going down again but they won't retest as say no point (it's all about money) but just look out for the symptoms but by then it can be too late - you are open to sepsis and many other infections.
So I feel I have no option but to take some treatment. All the endo's I had seen previously tried to get me to take RAI but I read about it and don't want the poison. My new one is better as I chose him from what I read, and says I can choose what option I want - even if I stay on AT drugs long term but can't see that as an option. Actually don't want surgery either but know I've got to go with one, doubt anybody wants to go through surgery with the risks and complications. I already have other health conditions like swallowing problems and read this can also be a complication with thyroidectomy as well as chewing issues and want to be able to eat. Also I worry about Levo conversion problems, like you and many others have, and can't afford to pay myself for T3/NDT drugs, as well as private tests and Dr's to prescribe, as they cost quite a lot here and I can't work now. Also as you say, once you have your thyroid removed and on synthetic replacement - it will not be the same and probably different outcome for people and just how well you will be is an unknown and quite scary as you can't go back afterwards. However I know my quality of life is poor now so?
The pressure of it all - my health and having to try and decide on the least worst option, to try to at least get some life is an awful strain - I think about it every day. Coupled with my partner's health lately and losing my father to covid (caught in hospital in 2020) and mother 6 months earIier due to cancer which NHS misdiagnosed as a harmless cyst - it's not been good lately. I know it is just going to cause me more problems down the line as it gets me down and no good for my mental health.
Good luck and best of health to your family - you seem like a very nice close family and you deserve some luck. I hope you continue onwards and upwards and have a wonderful life in that stunning country, New Zealand (I damn wish I could live there - so jealous!!)
I am heart broken to hear what u have written. I was very ill with graves. I attempted suicide 3 times. That was my breaking point. I figured if the graves didn’t kill me then I would likely kill myself so that is why I chose surgery. You can source NDT privately and if you ask through the forum and private message you could get an idea on cost of NDT privately. I do not regret having surgery. I am still negotiating with my dr the NDT levels. That is a work in progress and always will be. There is life after surgery and all the physical symptoms like tremor, sweating and heart palps are all gone. I am losing the weight I gained as well. What I like about having my own NDT is I can tweak my dose and through the advice on the forum I am not beholden to any dr dictating my replacement levels. I have the ability to find optima and not my dr dictating that to me and making me suffer small increases that sees me feeling good for 6 weeks and then dip down again and then fighting for an increase in NDT. I know I am not being honest with my dr but right now I don’t care so much about that but rather that I am feeling better and better as the months go by. Stronger. You are at a cross roads as you say. Only you can decide what to do. No one can make that decision for you. I did have one liver scare on PTU and was very ill for 2 weeks. Levo did not work for me. However my body does like NDT so I’m going with that for now. It’s a hard disease on you and your family. My husband and children know what I did to myself. I’m not ashamed but looking back I did not see at the time how sick I really was. I was mentally and physically a hollow. All u can do is make the best informed decision for yourself. I did not want RAI and refused that option. I hope reading this brings u home hope. Because there is hope and there is a life to be lived even though u may not see this in the here and now
Hi AllButBroken, I had a total thyroidectomy in 2011 and I was fine, I had a goiter so I had to have surgery.Sorry to hear you are so unwell I was the same but I had years of hell and now after a traumatic injury my thyroid dosage has increased. I think you just have to relax, try yoga, meditation, herbal tea. I tried anything. I also had an early menopause. Hope this helps x
Thanks for your reply. It's good to hear you, and others, have done well after surgery. I bet it was a relief to get it out of the way and even more so when you was fine after having had it without issues/further complications.
I don't really want surgery - I've never had any and scared to death (as if anybody does really want it!) I've not really had good experiences of the NHS - either for myself or my mother/father who were badly let down. I'm worried about complications as I have other conditions and have read about complicatons with this surgery such as I already have problems with my throat/swallowing and don't want more. I read it can be a 2 -3 hour operation on average which I was shocked about as I thought it would be a lot quicker - seems more major than I thought. Also it's afterwards as many seem not to do well on Levo and then have much trouble trying to get other medications, often not available on NHS. I can't work now due to health so paying privately for medication/tests is not really an option for me. (Saying that I don't want RAI either after having read about that and all the issues with it.)
I'm too ill though when I relapse to stay on AT drugs (carbimazole) as usually am taken into A&E due to how it affects my heart - severely. I have had Graves since 2016 but new endo has just told me that I have it severely as have high level of antibodies and my levels rise rapidly and told I will not really achieve remission for very long before relapse again. So staying on drugs long term doesn't seem an option as I don't have any life really. Lately the carbimazole seems to have pushed my white blood cell count (neutrophils) right down to abnormal which is worrying.
So I have a very difficult and horrible choice to make - seems no good option - trying to figure out what is the least worst option but don't know to be honest? Feels like I am in a nightmare.
You mention relaxing/de-stressing but unfortunately I am a stress type and I don't think anything will change that but I know it doesn't help - I don't have long nails as I bite them. Graves makes you even more stressed and when really overactive it's awful as it makes you panic stricken. When I am up to it I do like to do a bit of gardening which is a bit restful for me or a walk, but I'm male and so probably wouldn't feel right for me doing yoga or something and from what I've seen on TV etc. they seem mainly to be for female groups and would feel an outsider as such. I don't like fishing or watching sport much either which some males like.
I saw your profile and I also have IBS - as diagnosed a long time ago around 20 years old and still do. I saw your last post about overheating/sweating and I suffer with this massively. I am not overweight, I'm around 12 stone about average for height, so it isn't due to that. I was always prone to sweating and heat intolerance. I never tolerated heat very well, I seem to tolerate cold better but due to Graves I now sweat even more - even when weather isn't warm. In house I generally wander round just in my thin shorts (I am male) and just wear my underwear in bed except in coldest winters. It does mean getting frequent showers and when we have a hot summer spell, getting coolish shower before bed. I also have a large fan next to my bed as I wouldn't cope in summer. I often have to go in bathroom and sprinkle cold water on myself. I prefer the weather we are having at the moment - cooler, I didn't like June and nearly died last year with those high temperatures of nearly 40c near me. I used to go and sit outside on an evening back then until late as it was cooler than house as heat builds up in ours and by late afternoon it is roasting all night. I used to go abroad sometimes on holiday to Spain or similar - but only went outside months of June to September as too hot for me - sweat buckets and gets too much. When Graves is bad it is 10 times worse. When in ambulance/A&E they regaularly have trouble doing an ECG on me as pads can't stick to me and ECG machine doesn't work. They normally have to repeat it numerous times to get a reading. They end up frustrated with loads of screwed up paper read outs that are no good! Some are them are worried by the amount of sweating saying have I ever been tested for this or that? But it's the way I am coupled with the Graves now - I'm resigned to it - and most of the other symptoms but it's how it affects my heart and the breathlessness that is the real worry for me and why I think I will have to go through treatment some time soon.
I'm sorry to hear you had a traumatic injury and hope you are doing better now and can live your life well and fully, as quality of life is what matters and thyroid disease is no fun.
Hi, thank you for your post, I have just got over one issue then another drops up, but I am determined to get fit and well soon, please look after yourself, you deserve a good quality of life
Sorry you are feeling so broken. It’s disgraceful!
I’m so sad that our precious NHS is falling apart. People who don’t use it much have no idea what’s going on.
What rubbish from PALS. You absolutely can make a formal complaint about the abysmal care you’ve had the consultant, which is making you so ill.
All NHS treatment is optional and requires informed consent. That consultant is a bully and causing you undue stress.
As an aside, my Haemotology Consultant sends me a bundle of blood test request forms for the YEAR. I can use the local drop in or GP surgery for the blood test, take my form, I have results in 24h on the hospital app. It can be done!
Hope you get a much better Dr and are on the path to recovery soon.
Yes the NHS is in a terrible state and I think this was before Covid - it's just worse still now. There doesn't seem to be any care anymore - nobody seems bothered.
I asked my GP to change my endo and just seen him about 2 weeks ago for first time. I chose him as had read reviews and seemed the best of bunch where I am. So he does listen and said he wouldn't dictate what treatment I should have - he said I can choose what I want and agreed with me and said that he doesn't think RAI is a good treatment either. He said I can stay on AT drugs if I choose to but I don't think that is an option as he told me I have severe Graves as have very high antibodies which indicates this and has a bad affect on heart.
He also said due to high antibodies I will never achieve remission for very long and will relapse frequently which is my worst nightmare as I am so ill when I do and generally end up in A&E via ambulance. He also said as my GP group aren't that good (he knows what they are like) and aren't arranging blood tests which meant I was massively over medicated sending me very hypo, I can go to hospital endo clinic to have them every 3 months instead. However the only problem with this is his secretary is awful to deal with and everything is like on a go slow - very slow. If you ring to ask something she says she will put it to endo and let me know then, if at all, probably 6 to 8 weeks later may get a letter. It's the same with blood results - just rung about getting a copy of them that had more than 2 weeks back. She says they are not typed up yet but when they are will then be sent to endo for review then a copy will be sent to GP and I need to get them from GP. When I asked when will that be done she doesn't know and going by past expereince this will be at least 6 -8 weeks after I had the blood taken.
So by the time my bloods are reviewed by endo and then written to my GP to tell them to change my dose, it was based on my bloods probably 6, 8, 10 weeks ago and by then my levels will have moved on and have changed - it's all SOOOO terribly SLOOOOW. It's laughable if it wasn't so serious as it actually means you are ill on the wrong dose - either getting more hyper or hypo. Feel like you can't say anything though as she just put phone down on me last time as she didn't want me asking questions ( I wasn't abusive or shouting). Just don't feel like can get anywhere with this sort of treatment really. You wonder if they do it on purpose to sort of force you into treatment as you can't go on like this all the time.
I read your profile page and some of your previous posts and sounds like you are going through it with the NHS as well with lack of care - having to pay to see private consultants and for private tests - sadly this just seems the norm nowadays. Although I don't know much about about " thyroid goitre", I do suffer some of same/similar symptoms as you such as a lot of gastro issues/digestive (I have IBS/gord/reflux with swallowing issues), bad insomnia/sleep disturbance - usually sleep for 2 to 3 hours at a time at most, faitgue/weak muscles/tiredness, memory problems, anxiety/panic (when hyper) although I don't know about any of my vitamin/mineral levels as GP won't usually test for them unless have definitive symptoms pointing to that deficiency. When I asked why they say if they do routinely test and find anything, then they have to treat it! You couldn't make it up - talk about a proactive health service and preventative care!
This is what I mean, there just is no care anymore! My feeling is NHS has failed/failing me and failed both my mother and father (now both deceased) - would be better off scrapping and coming up with a better system - as there are many health systems around the world now that are much better than ours and without these huge waiting lists for everything. It's scandalous!
I do hope you get to the bottom of your issues and get them sorted out. Nobody wants to be left ill and in limbo and not be able to enjoy their life but I'm afraid the NHS doesn't fill me with hope in my experience. We need a Government that has the will to change things and I can't see that with any of the current clowns of any colour!
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So so tired of trying to get well with such poor results, 9 years on and I feel so depressed. (Graves’ disease) ( blood tests inc in post).
