Thyroid UK

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Should I stop carbimazole

Saw endo a few months ago, am hyperthyroid caused by Graves’ disease or thyroiditis (difference of opinion with consultants!) He took blood and said he would ring me that day with results and to possibly reduce my medication from 10mgs daily to 5 mgs daily. .

He didn’t! I rang secretary, explained - still no call! I took it upon myself to reduce to 5mgs daily.

He also told me at that consultation to have my bloods done again after 6-8 weeks. Again he said, let me know the results and again said he would ring me to perhaps further reduce my carbimazole to maybe 5mgs every other day. I’ve had the blood tests

Tsh 1.56 ( within range)

T3 5.9 (within range although on the lower side)

T4 11.0 ( within range but right on the lower side) range starts at 11.

I have felt terrible for the past month. Feeling really tired again all the time. Feeling very down, loose stools, I’ve gained 1.5 stones in the past 5-6 months. Been on carbimazole since April last year. Started on 20mgs.

I have emailed the results to the secretary who responded with “I’ve passed the email on to the consultant”. Nothing. No reply. No response. No advice about meds. I’m fed up of having to interpret my own blood tests. My GP marked them normal. I’m my opinion, I think I’m about to go ‘secondary hypothyrodism’. I have now reduced to 5mgs every other day but I think I should just stop all together.

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Gretna99

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The general view seems to be that we should remain on carbimazole for 12-18 months to stand the best chance of achieving remission from Graves’ - my endo has said typically 6 months from achieving a stable euthyroid range.

They seem to take the doses right down to 2.5mg. Why not try 5mg, and see how that goes until your next blood test, unless you continue to feel really awful.

Did they ever test your antibodies?

Also, I’ve been euthyroid since at least August (possibly earlier - can’t remember due to brain fog!)

Gretna99,

What is the FT3 range? 5.9 is usually high in range.

Secondary hypothyroidism is caused by pituitary dysfunction failing to issue sufficient TSH. It's not the same as being overmedicated on Carbimazole.

Your right clutter, the T3 isn’t at the lower end. (I’m cracking up!).

All I know is that for the past month I’ve been feeling extreme fatigue again. My weight is out of control and I can’t seem to do anything about it. I’m very moody again and irritable. I just can’t be bothered to do anything. I drop the kids off at school and I go to sleep again on the sofa.

Gretna99,

TSH 1.56 is low-normal, FT4 11 you have said is bottom of range, but if FT3 is high in range I think your thyroid is not yet stable and you should stick with 5mg daily or FT3 is likely to rise.

Gretna go to Elaine Moore.com she is an expert on Graves. Ideal treatment involves having ft4 at the top of the range and yes she could go into a hypothyroid state which in graves disease would push up your antibodies and ruin this euthyroid state.

I'm so shocked by this reply I had to write

Clutter was my lifeline when I was at the height of my graves adventure if you look at her profile she has years of experince supporting people unless you yourself are a medical professional then her advice and opinions are just the same as yours opinions which is what we are looking for here

Clutter says themselves that they had thyroid cancer and not graves. This 'advice' is not in line with best practice guidelines developed by graves experts. Also you should note, Clutter told Gretna whatshe should do, i didn't advise Gretna to take any particular course but to seek more accurate information and to be careful if she wants to reduce. Clutter attacked me when I said that my graves wasn't presenting in a normal fashion which would never happen to someone with hypothyroid. So im very happy to hear that you were supported but justlike hypothyroid the NHS treatment for graves is not good enough (as evidenced right here) and so i take issue with people pushing the party line and doling out inaccurate information.

I think you will find that the reason we are all here is because of the pratice guidlines by so called thyroid experts

Cat4health,

I would certainly have challenged inaccurate information but I doubt I attacked you.

Gosh Cat4health, you were really rude about Clutter. I’m shocked! I’ve got Graves, I joined this group when I was first diagnosed and since then I can honestly say I have had nothing but really good, sensible advice about my condition from her over the years and I think you’ll find that I’m not alone in that.

Look I'm not trying to be rude and so I've removed that part but can you imagine if every time someone said 'I'm thinking of ordering my own T3' or similar there was someone who doesn't even have hashimotos saying that they should just listen to their doctor and stay on levo?

Thank you for removing your comment about Clutter, she has been a lifeline to so many people on here so it really was uncalled for. It was Clutter who kept me sane in my darkest days.

You were very rude and disrespectful and it is no use trying to sugarcoat it!!😕

It is out right rude and extremely disrespectful when you are seeking to get help and your not happy with the answers . If you don't agree with the answers your getting don't bother to seek help on this forum . No one is forcing you to agree .

Clutter and all the administrators and members on this GREAT FORUM are taking time from themselfs helping out from their goodness of their heart .

Respect them and thank them for their time sharing their experiences and knowledge with you . You will always learn more from them more then you new before . Be nice respectful grateful and very appreciative of their time they shared with you . You obviously came to our GREAT FORUM because your Dr's didn't or couldn't help you .

I have no idea what your talking about. You clearly need to read my posts again. I am not being rude to anyone on this forum. Quite the opposite! I am being rude and sarcastic towards the consultant as with lots of people on this forum, they are told that they’re symptoms are not due to thyroid!! So I’m actually sending out a message that yet again a consultant has told another patient that their symptoms are not thyroid related. A comment that lots of people in this forum can relate too. I was being sarcastic when I said I’m fine , as the consultant told me! I’m certainly not fine and I certainly disagree with his suggestion that I am. And I don’t appreciate being told I am being rude as the only person I’ve been rude too is the consultant. If you read all my replies, you’ll see that I have actually thanked everyone on this forum for taking the time to help me. So I think you owe me an apology as I think you’ve been very rude to me and certainly misjudged my responses.

Sorry, I’ve just replied to your post and I now realise that it probably wasn’t directed to me. It’s very confusing when you click on a reply as you automatically think it’s for you and not for someone else who has commented. So I apologise for my rant but I really didn’t want anyone on here to think that I was being rude to anyone. I appreciate all my replies and some may be overly passionate but this just proves how frustrated some people are living with thyroid issues.

It does look that way doesnt it but igellis was responding to my rant about someone being rude. Chill now.xx

Cat4health,

You were rude. I read your original reply in the email notification before you edited your post!

Cat4health,

I don't recall you telling me not to talk about Graves, not that I would take any notice of someone who says that FT4 should be top of range or that someone with FT3 5.9 could go into a hypothyroid state.

I'd ask you to post substantiating links but I know they don't exist.

With TSH receptor antibodies there will be no TSH, any endo hammering a patient with Graves to get the TSH up is suspect in my opinion, although does indicate antibodies are down.

Girlscout2,

FT3 is 5.9 which is high in range.

I know, but that's why I asked futher down if they'd done a scan and tested all the antibodies as if it's hashitoxicosis no amount of CBZ will get that under control. However guidelines specifically state that in Graves patient doses should not be titrated to the TSH (because ANTIBODIES) but endos still do ... it's barbaric. 5.9 isn't high, that's about right, you wouldn't want to it go any higher. My endo was happy with a T3 of 7 ... depending on how long a patient has been T3 toxic, most are happier with a T3 at the top of the range or just slightly over.

I had very serious T3 toxicity and still have zero TSH 7 years after surgery, however they really did ruin me bashing me with CBZ, until my TSH rose, it was the worst period of my life. I had virtually no T4 at all - I gained 5 stone and could barely breathe or walk. Graves disease is handled very badly.

Girlscout2,

But Gretna's TSH isn't being targeted and endo recently reduced dose to 5mg.

Yes I know. The endo didn't reduce the dose, she reduced it herself and then did the blood tests. T4 is too low and TSH is too high though. Which is why I'm asking if they've done the full round of antibody tests, as there seems to be some confusion at to what the actual diagnosis is. If it's hashitoxicosis then that's different and requires a diff approach as it's v hard to control.

I’ve been on 5mgs for 2 months now. I reduced to 5mg every other day (2.5mgs daily) a week ago. I’m just fed up with no advice from endo. I don’t see him again until May and I am not prepared to feel ill until then. I suppose what I’m saying is that if they can’t be bothered to advise me then I’ll do it myself and I choose just coming off it. If he tells me off in May I’ll just say “well if you were doing your job then I wouldn’t have to diagnose and treat myself!”

This is my second endo. I changed from the first because they were useless. The team I see now are suppose to be one of the top teams and have been awarded centre of clinical excellence! LOL!!

Really frustrating. Are you confident you can tell the difference between feeling lousy hyper and hyPo? Just wondering, because I was hypo for one test, then back to hyper for the next

No. I can’t tell the difference at all. Feels the same to me. The only difference is my pulse is not racing.

I was hypo (overmedicated on Carbimazole) for a short period. I felt a bit tired most of the time, as opposed to having energy in the mornings, and feeling completely wiped-out in the afternoons, which seems to be the way when I am hyper. I started to feel cold when hypo, which happened a lot less when I was hyper. The most noticeable thing of all was my heart rate - I wear a watch with a heart rate monitor, and although I'm sure it isn't medically accurate, my heart rate is much slower when I am hypo - it sounds as if this may be your experience too.

As you say, the RVI does have a reputation for specialising in thyroid disease, so they should know what they are doing. However, that doesn't excuse failing to call the patient back as promised, or not taking the tome to adequately explain their treatment, which to my mind, is as much a sign of poor doctoring as failing to prescribe the proper treatment - it's making you anxious, and won't help you get better.

You could write to complain, either using the hospital's advertised channel, or perhaps by writing to the head of endocrinology. I would begin by reminding them of my latest test results and medication dose. It would be worth saying that you were promised a call, which never materialised, and that since you are feeling unwell, you feel somewhat abandoned by your specialist. From what you've said, it sounds s though you would also be justified in saying that the specialist has never taken the time to explain your treatment plan properly, and that you really want to know what the plans are (accepting they may change if your recovery does not match the plan), and what you should expect in terms of feeling better/worse at each stage. You could finish by requesting an appointment with a specialist who is prepared to spend a bit more time to put things right. Send the letter using a 'signed for' service.

It doesn't have to be this way - I'm also lucky enough to attend a clinic where there are genuine thyroid specialists, and ongoing thyroid research, but they never make me feel rushed, they explain my treatment, and are happy to answer my questions.

Given that you may have Graves', I would be wary of stopping Carbimazole altogether without medical advice. If you aren't actually getting worse on the recommended dose, I would probably stick with that too, in the hopes that they will respond to your letter promptly - and in any case, it is only a few weeks until your next test.

Hi i have done exactly the same titrated my own doses as my endo was never available and im also going onto my 3rd endo, i dont need them to tell me ro reduce dosage when i can quite clearly see and read my own levels(thanks to this great site). I am on 2.5 mgs but if it was me dont discontinue yet. Drop down slowly-also i get my bloods done every 4 .weeks.x

Gretna, go to Elaine Moore.com. She has the best guidelines for graves based on extensive research and knowledge of pharmacology. Best practice guidelines advise that ft4 should be kept at the top end of the normal range in order to reduce the autoimmunity. Now i realise there's some debate about Graves or thyroiditis in your case but with numbers like that your not hyper anymore. If you wanna reduce then go down to 2.5mg one day, 5mg the next for a while and then down to 2.5mg a day rather than going day on, day off because i understand consistency is important. You can buy pill splitters in pharmacys which will be helpful because your next stage would be 2.5mg one day and 1.25mg (1/4 pill) and down to 1.25mg every day before you stopped.

Gretna hasn't published the ranges used by her lab, but while her FT4 appears likely to be low in the range, her FT3 appears to be quite high still. If she reduces her carbimazole too quickly, she could end up with her FT3 going over range again.

I don’t have the ranges. I just remember from the last time that the range for t4 started at 11.

Anyway, I’ve emailed the secretary. I was very sarcastic (sorry, couldn’t help myself!). I basically said, I’m fed up of trying to treat myself, I’m fed up of being told to have bloods taken and then not been followed up by medical intervention. I told them I have now reduced my medication for the third time by myself, rightly or wrongly, I have told them that I am not qualified to be doing this and that I feel abandoned. I also said that I would continue to diagnose and treat myself until my apppointment in May as I felt I didn’t have much choice!

I have received a reply from the secretary .........

“ I have passed your email onto the consultant as a matter of urgency”

I’ll let you all know the outcome.

Thank you all for taking the time to reply to me. Xxxxxxx

Gretna99 where abouts in the country are you, if you don't mind me asking, I had similar situation,I was on carbimazole for around 12 months, due to overactive graves disease, many years ago, I know how horrible it is,can you contact your local health watch UK and tell them your story,that your being left with no information about what to do.

I’m in the north east. My hospital is the RVI at Newcastle. I’m fed up of not knowing what to do. I know my meds need adjusting but I’m not an endocrinologist so not sure what to do. Do I just continue to reduce like others have mentioned, do I need block and replace? Do I just stop and see what happens? I really don’t know

I would contact the secretary,and tell them,if you don't get a reply,write a letter of complaints to pals,and a copy to your MP,I wouldn't stop any medication or change until you've been advised by a professional,I know it's exhausting.

So the consultant rang me!

Says he’s happy with my results. My symptoms are not due to my thyroid. My weight gain isn’t due to my thyroid. He can’t remember our long conversation about Acute thyroiditis. I have graves!

He’s going to bring my appointment forward to March and hopefully stop treatment then.

So basically, I’m fine!! Lol

That's good news

That's nonsense, 'your symptoms are not due to your thyroid' is patently untrue. Not sure I like the sound of this endo. I really recommend you become an 'expert patient' in graves disease, most of us have to manage it ourselves and learn to manage our doctors.

If this is indeed Graves you should follow the advice above.

But I would like to add that you need a full antibody check done.

Because, if this is a Hashi's flare (GPs are known to get confused and assume it to be Graves) then carbimazole won't help - check the pharma leaflet that comes with the tablets that say that its use is contra-indicated in thyroiditis.

You must ask a Graves expert about the signature antibodies. The fact that one of your consultants is not certain is enough to raise concern over your medication. Generally speaking, thyroiditis will 'resolve itself' far more quickly than Graves - in the latter there is a far more slow response in bloods and requires long-term medication as stated above.

Hello, the very best advice I can give is to go to the Elaine Moore website, she gives fantastic advice to us Graves' disease patients. Only for her I would be hypothyroid.

Best wishes.

I’m Graves turned hypo

Could you screen shot the Elaine Moore page that would help me

Did you mean, post a link?

elaine-moore.com/

I too have Graves, I was on just carbizamol I think it was 5mg a day, I went hypo and then it was upped again. On my last visit to the endo they changed me to block and replace, I feel better than when I was just on carbizamol.

I think you should keep hounding your consultant to get answers.

Phone them again and keep harassing them if you feel more happy in reducing meds with your endo's approval, but mine were both useless, they dont want people to self medicate but at the same time people are desperate to feel better and be on the correct dosage but there is never any help from the professionals so what do we do? We self medicate!!, the only one time i managed to speak to my 1st endo was when his secretary kept saying to me he is very busy so i told her i was going to reduce my dose myself then!! Within a hour he was on the phone. Worked a treat.xx😊

Hi Gretna99

I was diagnosed Graves 12yrs ago by endo at RVI after blood tests and ultrasound imagery, started on carbimazole then after couple of further blood tests was put on block and replace until euthroid then all meds withdrawn.

I did relapse eventually and ended up having RAI treatment.

My 30yr old daughter has now been diagnosed with Graves and is also under RVI, her treatment has started as mine did and she is currently on block snd replace again quite quickly from diagnosis so i don’t understand why you have been left so long on only carbimazole meds.

I hope you get the right treatment for your graves as soon as possible as unfortunately its a very long ongoing journey for most of us.

Good Luck

Hi Lou17 - some clinics offer titration rather than B&R. It doesn't seem to make much difference to the eventual outcome.

Yes it depends on the area of hospital-midlands newcross is titration of carb.x

When my wife was struck with Graves, the Endo prescribed 20mg Carbimozole & said "see you in 6 months"..

Well I wouldn't have believed it unless I saw it, but that stuff turned her from shaking Hyper wreck to brain dead Hypo couch potato inside 10 days.

Thankfully, we got some brilliant advice from a Graves sufferer (thank you Tess), who basically said "you know what Hyper feels like. You now know what Hypo feels like. Gauge your dose on how you feel".

She dropped to 10mg, then 5mg.

Eventually she didn't need it. 5 years on now & she's doing fine with no medication.

Good luck!

Hi, thanks knackersyard

This is really great to read that your wife has recovered. It gives us in mid treatment hope 😊

seriously, no blood tests or endo appointments in all that time ? Most of us with Graves' seem to have blood tests every 4-6 weeks while we are being treated, and endo appointments at the same rate, at least until we are in a steady euthyroid state.

Yes, maybe she’s just lucky or a one off?

When she came down with Graves, she was really bad. Rapid weight loss, diarrhoea, shaking. On day one of Carbimozole she said she’d never felt better. It worked that fast, but then quickly took her the other way.

She still has regular blood tests, but they’re always fine.

I envy your wife : )

Yes, she’s had a lucky escape from Graves so far. She did get breast cancer the year after though, so not all luck. She’s thankfully clear of that now.

You never know what’s coming. Just have to be positive & make the best of everything.

Couldn't agree more.

I wish your wife good health and happy new year to u both : )

Thank you & same to you!

i wouldn't stop it but good consultants will let you titrate it. The thing with CBZ is it controls antibodies so you kinda need it however your TSH is detectable which would suggest your antibodies are under control. I gained five stone in three months with an idiot endo, who also didn't monitor me properly. Have you had ALL your antibodies checked? TRab (or TSI) TgAb and TPO? Is it just graves or is it graves and hashis? Reason i ask is I had both and was cycling through T3 spikes every four hours, they hammered me into the ground on that stuff but failed to properly diagnose or monitor me. My T4 was like yours, and yet my T3 was up. My stupid endo was trying to get my TSH to rise and yet because I had TrAb it was stuck at zero for over a year. beware an endo paying too much mind to the TSH in a graves patient.

I'd drop him a note to say you are going to 5mg alternate days as you feel dreadful and you need blood tests in three weeks. harangue your GP is necessary.

Also Endos are OBSESSED with remission. FORGET remission, you'll almost certainly relapse and you'll be back where you started with them trying to nuke you or cut your throat. There is no reason why you can't stay on CBZ for years and years, some people take 2.5mg once a week and do just fine. provided your liver is OK, I really would not worry about remission.

The important thing now is to get yourself feeling and functioning ok and to make sure you are being monitored properly. Have they scanned your thyroid?

Also are you taking any natural stuff - like L carnitine, I stupidly took loads of that on the advice of a forum and further sent myself hypo. Not on betablockers?

Girlscout

I only take a multivitamin. My thyroid was scanned. I have 2 small nodules which they told me was “normal for me”.

What antibody tests have they actually done and why is there a difference of opinion?

They’ve done all the antibodies I think. I’m positive for graves but last test was 1.9 so not very high. Consultant says he would expect to see higher levels with someone with graves. He thinks I’ve got an acute thyroiditis but can’t prove it! I also think it’s because I have no eye symptoms whatsoever. Which is mad because not everyone with graves gets eye symptoms. So I don’t know if I have graves or thyroiditis. On his last letter to my GP, even after his discussion about thyroiditis, the letter still said graves although he did say it was a “mild disease”! Whatever that means? Certainly doesn’t feel mild to me!

What were your antibody results, you need TRab, also called TSI, TPO AND TgAb to be tested.

You just need to be careful not to tip yourself into hyper again as your T3 is near the top of the range. My endo was happy with it a tad over range (as I'd been hyper for ages and my brain was happier with more T3) but I was feeling SHIT with low T4 and TSH over 1.

You should be being far more closely monitored. But the antibody results will clinch the diagnosis. It is possible to have hashis and graves together (as I did, and the eyes and cancer, happy days!) which is a very bizarre and up and down situation of being hypo and hyper at the same time and horrible T3 spikes.

Block and replace might be better for you than cutting the CBZ down too far. You must monitor your symptoms carefully now - heart rate, fine tremors, feeling irritable etc - to see if you are creeping back up.

CBZ is a horrible drug but it tamps down the autoimmune response, so you kinda need it.

One final question, is your T3 staying in range on your results historically, and how long have you been on carbimazole?

One thing to note is impatience can be a symptom of your disease, everything in you is going a bit too fast, it's important not to make rash decisions when you feel rubbish as sometimes it's not you but your illness talking if you see what I mean. Relapse and risk of thyroid storm is no joking matter.

It's quite common with Hyperthyroidism to go on 'block and replace' therapy, where you carry on taking carbimazole but add in Levothyroxine. I think it might be time for you to add in the Levothyroxine, which would bring your T4 up. However you do need to do this under medical supervision, It's such a pity your consultant isn't answering your communication.

Quite a few of us are on titration, and never add levo. Although Gretna's FT4 appears to be low (we don't know the actual ranges), her FT3 appears quite high. If she reduces her carbi, or adds in levo, the FT3 could start climbing again. Her endo will presumably look at the graph of her tests over time, and decide which is the greater risk.

Indeed, that's why her consultant should be giving her regular blood tests, probably every 2-4 weeks, and adjusting her meds carefully, not ignoring her as seems to be the case. It's disappointing to see someone suffering.

Hi. If you wanna chat on the phone please email me at <email address deleted>. It would be nice to speak directly with someone else with graves and I think it might help both of us I’ve had it for 4 years now and have been through what you are going through. I’m alexandra and am based in Bristol. I’m 42. Alex

Alexjones,

I've deleted your email addy for your own security. If Gretna99 wishes to speak with you privately she can use private messages which are secure.

To read a private message: support.healthunlocked.com/...

To send a private message: support.healthunlocked.com/...

Thanks. Didnt know I was at risk! It’s only an email address. Also Didn’t know how to do the private message thing so thanks for explaining how to do that. Alex

hi Gretna. I hope u are feeling better.

personally if u have a choice I think u should change doctors. this fella sounds like the PITS!!! we are already ill and feeling sick, there's no need to add more stress.

I've been on carbimazole for 3 yrs now. its helped with the graves. it would be very helpful to find a doctor who can provide some guidance re the interpretation of your blood test results so that u can titrate the carbi to its ideal level for your condition. this is crucial. I too experienced some hypo symptoms in the first year when the dosage was still being adjusted. its no small matter since too much carbi was making my heart beat weird.

having that professional guidance, especially initially, will give u time to read up and understand your condition and get better acquainted with how its affecting you and your body.

frankly the carbi only helps with the basics ie. stabilizing the thyroid hormone levels. but this is a really important first step though, and alongside taking the carbi, adjustments have to be made to lifestyle - proper nutrition, state of your overall health, reducing stress levels[VERY IMPORTANT], are u eating healthily, getting enough rest. stuff like that affect your daily well being. no kidding.

after about a year taking and titrating my carbi, my body started to stabilize and I felt pretty good for a few months, stupidly thinking I was well again, before it all came crashing back down cos the doctors never told me nor did I read up[STUPID ME] that I had to make requisite lifestyle adjustments, take supplements if needed, adjust my diet, get sufficient rest and JUST CUT DOWN THE STRESS. I had to give up work as my body went into overdrive and I could barely function.

one other thing - I never came off my carbi to try and see if I could do without it. listening to my body, I didn't think at the time it would be able to take stopping the carbi. my worst symptom back then was a high heart rate. I might consider stopping it in the future if I really do feel well.

also, the recommendations to check out Elaine moore's website are spot on. Elaine's a wonderful help to many millions of us suffering cos of rotten doctors who never do their jobs. I find reading the different advice she gives to different people with all our varying symptoms, a big help in understanding my own problems.

god bless u and I hope u feel better soon.

Thyroid UK

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