I'm Peter, a 45 year old man living in Scotland.In the second half of 2015 i started to lose a lot of weight. i went from 11.5 stone to 9.5 stone between June and mid December of 2015 without any kind of dieting or change in diet. I then lost a further stone from mid December and mid January 2016. While the weight loss was quick, it wasn't entirely unwelcome as like many i felt i could've stood to lose a few pounds. I had put his down to stress deriving from a difficult break up with my longterm partner and had presumed that it would pass. However it did not pass and i started to experience a tremor.
As a hairdresser having my hands shake was terrible and i could start to realise clients were noticing. i went to the doctor and prescribed 40mg Propanolol twice a day. The quick acting of the Propanolol lead me to feel i could just take them when i get a bit shaky and because they worked well i often forgot to take my second dose. As the shaking continued i went back to the doctor and she prescribed my 80mg slow release Propanolol to avoid my forgetting the second dose. Things went on fine up until October of 2016 when i would have the very occasional feeling of being faint but it was usually in the evening while i was at home and would just sit back, close my eyes and ride it out, a few minutes later i was fine again.
In february of this year i went out to my local chippy for some fish & chips and while standing in the queue i started to feel faint and really need to sit down, like immediately. I left the chippy and knew i had to sit down, even if it was on the pavement. The side of the street i was on was busy and i spotted a step across the road that i could sit on. Unfortunately i didn't make it to the other side of the road and passed out in the street in front of a bus. Passers by came to help and an ambulance was called. I was kept in hospital over night and had bloods taken. The hospital told me my blood pressure had dropped and that's why i passed out. They also diagnosed me with Hyperthyroidism and put me on 40mg a day of Carbimazole. They also asked me to have my doctor redo my bloods after 6 weeks to see if there was any change.
After 6 weeks, and new bloods, my doctor said there wasn't a change in my bloods and to continue with the Propanolol and Carbimazole, which was fine for me as i had felt pretty much back to normal since starting the Carbimazole. The doctor informed me that if the drugs continued not to work then they could operate and remove a part of the Thyroid as i couldn't have the Carbimazole continually because it wasn't great for my heart. i asked if stress could be a factor but they said no. Nothing was really explained to me beyond that and i didn't question it due to my generally having a great deal of faith in medical professionals.
I continued with the Propanolol and Carbimazole and recently had new bloods done about 3 weeks ago. My doctor informed me that there still wasn't a change and asked me to up the Carbimazole to 60mg per day, which i did. She also mentioned that if this didn't work then they would give me a radioactive iodine treatment, something she assured me is completely safe. She did also mention that there was a ''chance'' of the treatment resulting in my becoming Hypo afterwards.
After about 2 weeks on 60mg carbimazole i started to feel really lethargic and down on a few occasions but it would usually pass by the evening time. I've also had a sore throat for about a week now and very slightly itchy eyes but both of these symptoms are mild and easily tolerable. The Lethargy was horrible though and i'd hate to get that any worse than i have it already.For the first time i did a web search on Hyperthyroidism and the Radioactive Iodine treatment and this is how i found this site just last week. After reading a few posts i started to get a better idea of the quick acting nature of Carbimazole and got the idea that the 60mg dose was now making me Hypo. I called the doctor last Tuesday as i was feeling really lethargic and asked if i could split the 60mg of Carbimazole into two doses, morning and evening, after reading a similar account to my own on here. he said he didn't have a problem with that. Since then the occasional bouts of lethargy have massively reduced to something reasonably tolerable and short lived.
I've had no mention of seeing an Endocrinologist so far but i've booked a doctors appointment for tomorrow to ask to see one before consider any more serious treatment.
Can anyone advise me on what questions i should be asking the doctor and hopefully the Endo. i understand that most people seem to do well after the radioactive treatment with medication but i'm seriously alarmed at the plight of those who don't respond quite as well given the fact that their symptoms seem so debilitating.
What are they things i need to know? Any advise would be very welcome.
regards Peter.
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Hi Peter I am on Carbimazole like yourself although mine is a much lower dose. You need to ask if you can be referred to an endocronologist and ask them about potential Graves’ disease. Also consider asking for either a radioactive pet scan or iodine based thyroid uptake scan - both of which I have had done. I’m still waiting for results of my uptake scan but this tells the doctors what where and how much activity is in your thyroid to be able to organise the best treatment plan for you. I hope this is helpful for you Lisa
Thank you Lisa, i hadn't heard of either of those tests so glad to have the information. Can i ask are those tests done before or after the Radioactive Iodine treatment itself?
I have a feeling that a T3 Uptake test is something that is done in the US but not the UK. The important tests you need in the UK are Free t3, Free T4 and TSH, in that order.
However, you can bet that doctors only do them in the opposite order, and will only do TSH if they can get away with it.
The lethargy you suffered from will probably have been from your first experience of medication-induced hypothyroidism.
I continued with the Propanolol and Carbimazole and recently had new bloods done about 3 weeks ago. My doctor informed me that there still wasn't a change and asked me to up the Carbimazole to 60mg per day, which i did.
I would bet you 50p that your doctor has only had TSH tested. Unfortunately Free T4 and Free T3 can change without any obvious change to a very low TSH.
I think you should ask your doctor for copies of the results of your blood tests. You need to know what was tested from before your diagnosis onwards.
It would be helpful to know if you have been tested for Graves' Disease, and if you have been tested for other thyroid antibodies - TPO and TG antibodies.
Thanks for the reply humanbean, I'll make sure to ask what tests have or haven't been done so far. I'm reading as much as i can on here about other peoples experiences and there's so much to take in. Glad i made the post, thanks
Really, really important that you get those antibodies tested! If, as HB says, they are only testing your TSH, there could be other things causing it to be low, but doctors do love to jump to conclusions and assume that it's Grave's - or some form of hyperthyroidism - without doing the full tests. And, that could be why there is no change in your results, despite increasing doses of anti-thyroid meds.
Thank you Greygoose, i'll ask for that too. Is the reason that doctors test TSH first because the most probable scenario is that ''Result A is caused by B'' rather than ''Result A likely is caused by B, but could in fact be because of C,D or E''. I'm just presuming that if i ask for certain tests then the Doctor is likely to ask why i want those tests done. To be fair i haven't really asked much at all because they have always sounded like what i'm going through is pretty standard. So i'm maybe jumping the gun i suppose that my doctor will be dismissive of my requests. i haven't really given them the chance yet. It's just that so far i don't think i've seen the same doctor twice and i'd rather be prepared. Again thanks for the advice, i appreciate it.
They just do the TSH because they learnt in med school that it's all they need to do to know all they need to know about the thyroid. They couldn't be more wrong! But, it's also the cheapest test, so... But, I wouldn't let them prescribe me anything or touch my thyroid, without seeing those antibody results!
You are correct Humanbean! I am from Ireland living in the UK and the NHS guidelines only allow GPs to do TSH I had a friend who even with a history of Thyroid problems and on meds was repeatable told your results are fine! It really is a dreadful situation here as I come across many people with Thyroid symptoms who are untreated! They only check them properly when you're an inpatient. The only way around the problem is for people to get them checked privately however Again the NHS state that their Drs do not have to take on board any results obtained outside the NHS so unless you have private healthcare or money it is hard to get the treatment you need until you are really ill or suffer a side effect like a heart attack from an overactive Thyroid
Your quite right, the first thing to ask the GP is to refer you to an endocrinologist who normally deal with hyperthyroid patients. Has your GP liaised with an endo for advice?
I too live in Scotland and in my neck of the woods if your TSH is out of range which yours will be suppressed the labs then automatically test t4 and t3. It's important at this stage for you to get copies of all results because then you can keep an eye on where on the reference range you feel at your best. I always keep an eye on t4 and t3, your TSH is always last to budge and can take sometimes years as mine has done but as long as your t4 and t3 come down as they should with the carbimazole you'll be fine. 60mg is a very high dose so dependant on blood test results this should be titrated accordingly to avoid going hypo.
It may be very early days to consider other options for you. Personally I decided to stick with the carbimazole and after a number of years am on a 5mg maintenance dose and all is good thyroid wise.
Be extremely kind to yourself and if at all possible try to stay away from stress. At this stage also limit exercise as your body is in major overdrive and dealing with enough.
Thank you for sharing Joy. I did get the impression from other members posts that 60Mg Carb was a high dose. I first noticed the Lethargy about 10 days of so after starting on 60mg and it was unpleasant to say the least, it's also clear from some other members experiences that it would still be likely considered mild. For example i could still work the tv remote and pet the dog but there was no way i was getting out of my chair without good cause like to go to the bathroom. Had i woken in the morning feeling that way, i would've definitely called in sick.
So for you, you chose the option of continuing the carbimazole over the Radio iodine? And do you still feel confident that that was the best thing for you based on the results you were given?
I wasn't offered radio iodine as I have hyper / graves but was offered thyroidectomy which I refused as I wanted to give the carbimazole a good chance. For me I would say that was the right choice at the time.
During my hyper days I too became exhausted, lost all muscle, breathless, palpitations, tremors etc but stuck with it and eventually got better as my levels lowered.
I'm not sure if your exhaustion is due to hyper from your body being in continual over drive for so long or becoming hypo from over medication but I think you'll get a better idea when your at GP tomorrow and know more about your blood results.
I meant to say earlier, you mentioned stress being a factor to your GP, my endo agrees that stress can indeed be a trigger to hyperthyroidism.
Hi yes i have been on Carbimazole since 1999 had half my thyroid removed in 2013 due to nodules and they wanted to test them in case of cancer thank god it was negative had two years free of meds then went over active again i now take 10mg one day and 5 mg the next but i have had no problems taking the drug i just didnt fancy radio active iodine hope all goes well for you .
Thanks Sandra, can i ask how did your Doctor react to you wanting to avoid the Radioactive Iodine? I'm guessing the RIA is what they Docs themselves were pushing for?
I'm hyper (with Graves) and live in Wales. Although our health system (like your own) is devolved, my experience has been similar to that of people living in England. Typically GPs only prescribe a low dose of Carbimazole (maybe 20mg/day tops) until we've had an endo appointment. We then have FT3 and FT4 tests, plus antibody tests automatically, which help confirm whether there is any autoimmune involvement, and whether carbi is in fact the most appropriate reatment.
The endos warn us that getting sorted will be a long haul, typically a year to 18 months, and six weeks is absolutely nothing, and very early to be doing anything more than mentioning the long-term possibility of radio-active iodine (although in the US, they do typically look at this option much sooner than in England and Wales).. I certainly began to feel better very quickly once I was on carbimazole, but even sixteen weeks later, my FT3 was still high, although they still expect it to come down. I'm on a lower dose than you (40mg), but this has always been split into two doses/day, and this seems usual in order to maintain the level of carbi needed to deal with the excess thyroid.
I would ask your GP for copies of your blood tests, so that you can see what's been done, and whether in fact your thyroid levels have dropped at all, but are simply not yet within range. I would definitely ask to see an endo - I don't know whether you get the chance to choose where you are referred in Scotland, but it might be worth doing a bit of research to see whether any of your local hospitals have endos who specialise in thyroid conditions, as opposed to those who mainly deal with diabetes.
If you do have Graves, they should also be asking questions about your eyes, and possibly ordering additional tests, as thyroid eye disease can be a complication. You mention itchiness- I think "grittiness" is the more typical symptom of this. If you happen to be due a visit to the optician anyway, mention the fact that you've been diagnosed as hyperthyroid, and they should be on the watch for any symptoms.
On that dose of carbi,especially without replacement thyroid in parallel, I would have thought you should be having regular blood tests - my second endo appointment was a month after the first, and currently my FT3, FT4 and TSH levels are tested every six weeks, although I only see the endo every three months. As Humanbean says, TSH takes longer to react than FT3 and FT4, so you need all three to be tested.
Assuming you do have Graves, it's more likely you will be over-medicated on carbi (i.e. Your thyroid levels have dropped) rather than that you are hypo. However, you need antibody tests to confirm that you don't have another autoimmune condition , Hashimotos, which is in fact a hypo condition which may have a hyper stage at the outset.
To avoid you becoming over-medicated in Carbi, Graves patients are typically allocated to one of two regimes - 'block and replace', where a high dose of carbi is prescribed alongside thyroid replacement, and 'titration' where the dose starts high, but is then reduced as thyroid levels come down in this case, no replacement thyroid is given, so regular blood tests (FT3 and FT4, TSH is something of a sideshow in this context) are very important
You mention a sore throat - carbi patients should be warned that in rare cases, carbi can reduce the white blood cell count to a level where you can't fight infection, and emergency hospital treatment is required . The first symptom of this is a sore throat or mouth ulcers, so we are told that if we get these, we should head for the GP surgery or A&E, explain that we are on carbi and request a blood test . If you've had a mild sore throat for more than a week, and don't feel worse, it's unlikely you've got this, but I just wondered whether you'd been given any information about the possibility .
Thanks Valarian, I'll ask the Doctors if they've considered Graves. None have mentioned it to me so far so i'll make sure start that dialogue if the don't. Describing my eyes as itchy probably wasn't the best description for what i'm feeling, they're not really gritty either, they just feel like i haven't slept in a while. I will bring this to the Docs attention though.
Thanks for all the information, Everyone here has been massively helpful for someone who knew absolutely nothing before the weekend.
Thanks for sharing Helen, I'll make sure to ask about my nutrition, which i'll admit is far from ''healthy''. May thanks Peter
Hi Peter, I was diagnosed as Hyperthyroidism too. I am still on Carbimazole 5mg and Propranolol 60mg for 5 months. If you wish, you can try to reduce dose of Carbimazole under 30mg to prevent of becoming Hypothyroidism. Propranolol is very good for your heart and anxiety. RAI iodine treatment is safe, but it is risky and it can develop Hypothyrodism. You decide what is best for you. Also, it's best to take thyroid antibodies tests to see if you are positive with Grave's and autoimmune disease. TSI and TRab tests. I hope you feel better.
Hi Peter, I was diagnosed as being Hyper back in April, although I'd suffered all the symptoms since November, only I didn't go to the Doctors. My Doctor took advice from the Endo's and I was on 40mg Carbimazole and beta-blockers immediately. After about 6 weeks I felt more human and stopped taking my beta-blockers I haven't taken them since although I always carry them with me just in case.
I did have to stop the Carbimazole as I got Tonsillitus and my white cell count drop dangerously low. I was given antibiotics and then when all clear restarted.
I had blood tests every month until my Endo appointment came through I have been diagnosed with Graves. My Carbimazol has now been dropped to 10mg a day and I see the Endo in November.
Hello folks, the result of my visit to the doctors today was to discover i had been diagnosed as Graves, the first time I've been told. And to be honest the only i think she mentioned it was because I asked her what the findings of the bloods were, then she read it back verbatim. All i heard was the words Graves, T3 & T4 , she did confirm that I'd had T3 & T4 tests. She flat out dodged my requests for copies of my bloods too. Looked almost disgusted that I'd dared to ask.
I'm going to request another Doctor next time. However she said my numbers had improved since the increase to 60mg . She did let me see the screen, it was a lot of numbers but i saw that there definitely were T3 & T4 tests done. She said i was now considered Eurhyroidism and my Carbimazole has been reduced to 30mg.
It wasn't the most constructive of conversations but I suppose I'm supposed to feel better about it.
So given that we now know I've had Graves, T3 & T4, TSH tests definitely done and are apparently "improving", can i presume their diagnosis is more accurate than just the TSH test alone?
I think Scotland is the same as England and Wales, and that you have a legal right to see your test results. If you want a copy, they can charge up to £10 for records that are available in electronic format, but to be honest, for a single sheet of A4, I'd complain if they tried charging more than £1!
The numbers will have shown your current result, and the normal range for each test. These vary from lab to lab, so you need to know both the result and the range, which is typically shown in brackets next to the result. Quite often, there will also be a note indicating where a result is outside the normal range.
Euthyroid simply means that your thyroid now appears to be working normally again, although it has so far only achieved this state with the support of a hefty dose of Carbimazole , so not really normal yet ! It does sound as though you've had some of the tests you need, (e.g. T3 and T4, which are the thyroid levels) although it's not entirely clear whether they've tested for antibodies or not, and if so, which ones. TSH Is 'thyroid stimulating hormone', which tells the thyroid to go into production.. Yours is probably around zero at the moment, as you've had excess thyroid for a while, so no need to produce any more. It will probably take a while for TSH to return to normal, so T3 and T4 are better indicators of your current state.
How long have you been on the Carbimazole in total ? The dose is now being reduced, which is the titration approach. Typically, they get you down to a much lower dose over quite a few months- perhaps a year to eighteen months before they take you off it altogether, although I do know someone who came off it after only a few months, following an allergic reaction, and has been fine ever since.
Did they look at your eyes, or ask any questions about them ?
Hi Valarian, I've been on the Carbimazole since March 1st this year. Yhat was 40mg and then i was upped to 60mg on the 9th of last month. Starting on 30mg as of today.
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