fluctuating blood results on carbimazole

hi, I have Graves i was on 15mgs of carbimazole which brought my t4 down to 9-0 started to feel tired and could not keep warm so GP dropped me to 10mgs as he thought I may be going underactive, within a couple of months it went up to 13.9 I continued with 10.0mgs and started getting symptoms of hyper again 2 months later I saw my endo (now 4 months on 10mgs ) and it had jumped to 24.7, he said to increase back to 15.mgs but thinks I would be better having RAI, not sure what to do as I,v heard the after affects can be awful, I,m in such a dilemma and worried that I cant keep stable it looks as if I will never be able to be weaned of the carb , I also wake just after falling asleep with breathlessness and my heart races, I have told my endo & GP but never get an answer , my blood pressure is high again as is my heart rate I feel anxious at my wits end any advice on RAI please my endo says side affects are not a problem as they monitor you with blood tests I see him again in 6 weeks

26 Replies

  • What an awful way to have to live. Can you tell when you need to either increase or decrease without a test result or do you always wait for his opinion? It would be good to try and save your gland but for some people perhaps it just can't be done.


  • hi Heloise yes I do know when the symptoms start to appear, I have played about with the dose once or twice but only in the short term I was advised not to alter my dose as it might just give a false reading in my blood tests I asked if I could take 12.5 as an average and see if it stabilizes, he says no it can only be increased or decreased by 5mgs , I don't know why I cant have half a tablet or even if it would work,i do know that I am not happy to have RAI I have refused it for the last 18 months but if I keep yo-yoing like this maybe I have no choice, I would like to hear from anyone who has undergone this and how they felt

  • Frian, If you had more frequent blood tests you wouldn't be yo-yoing as dose would be titrated before your levels get too high or too low. I thought monthly blood tests were the norm to monitor patients on Carbimazole.

    As 5mg is the smallest available dose many people have to cut 5mcg in half to achieve the right dose for them. Try 12.5mg for yourself to see whether it suits you and avoids the yo-yoing you have experienced.

  • I wasn't sure if I could cut one in half but hopefully when my levels rise again I will try 12.mcg and see if it works in maintaining me thanks

  • The norm is more likely to be 8 - 12 weeks for blood tests. I was told by my Endo to go get a test done at 4 weeks if I felt really unwell.

    BTW it's mg not mcg :)

  • Thanks, Silver_Fairy. I've amended my post. I'm surprised at 8-12 week blood tests. It would be reasonable if levels were relatively stable but it seems to long when Frian's levels are still fluctuating.

  • It depends on if you have a good Endo (there's a surprise!) I sometimes went 4 months while I was titrating the dose, which is way too long.

  • Silver_Fairy, I sometimes think "a good endo" is an oxymoron :(

  • Indeedy! But I have been able to take my health in my own hands with mine to a certain degree. She gave me poor info, but luckily I had already researched so could put her right! Also she's always saying (in sarcastic tones) that she doesnt know what use she is, as I never take her advice and go my own way. But..........I am now in remission (wont say too much as fingers tightly crossed!)

  • SF, I find it hard not to contradict most of the things my endo says. He looked very surprised when I meekly agreed with one of his suggestions in Dec. :-D

  • I know what I would do with that doctor's advice:) There have been plenty of Graves patients here in the past so maybe some will respond. Can you check past posts?

  • Well, my Endo let me decrease how I felt I needed to. My last dose was 2.5mg 3 - 4 times per week, so yes it can be decreased by less than 5mg!

  • when I asked my endo about titrating he just said an increase or decrease of 5mcg was the recommended norm so its good to know I can control the dose as i feel I need it, he worried me that to up and down the dose would give a false reading ,but as long as I feel ok. and my bloods are within range how can it be wrong to titrate

  • When you titrate you do need to give the medication a chance to work on your levels. To change your dose more than every four weeks is probably not a good thing.

  • One thing which they could try is block-and-replace, where they suppress your thyroid completely with carbimazole, and then give you thyroid replacement. It is one way of making you more stable, and some people can be on B-and-r for a long time.

    I cannot tell you what is the right thing for you, but what I will say is that having the thyroid destroyed means you are very likely to be hypothyroid the rest of your life, and being Graves' without a thyroid means many GPs have little or no idea how to manage the condition.

    I have Graves' and have had a Total Thyroidectomy so now have no thyroid, but have always been tested and the results have been interpreted in exactly the same way as someone who does not have Graves' - it is treated as simple hypothyroidism and the TSH, which is suppressed in active Graves', is used to get the dose right - so the dose was always too low until I took matters into my own hands.

  • I'm surprised your doctor is dealing with your treatment. I always thought hyper people / Graves people had to be seen by an endo.

    I was tested every six weeks but to be honest I knew I needed an increase of levo after about four. Like clutter says if you were monitored more regularly you wouldn't be lurching fr one extreme to another. No wonder you feel awful.

    Have you thought about doing a home blood test through Blue Horzon. Easy and quick - not cheap though.

    It's sometimes hard to tell where you are, whenever I went underactive or needed an increase in levo I would get the pounding heart etc pretty much like when I was hyper even though I wasnt. I was also very cold. Really, really cold - right through to my bones.

    Could you be referred to a different endo / hospital who use block and replace? (Louise at TUK has a list) I think it must be easier to increase / decrease levo than to do it with carbimazole but then I was treated with B&R.

  • sorry I failed to say I do see my endo who usually decides what mcg to take, and my doctor is reluctant to go over his head, but in this case when he thought I may be going hypo he suggested I reduce my dose and see how I felt, it was 12 weeks later when I saw my endo and discovered my t4 had climbed again from 9.0 then 13.9 then 24.5 I knew it had because of the way I felt, my endo keeps pointing me in the direction of RAI as he puts it ( saves all the ups and downs ) but its my body and I don't want to regret making the wrong decition as there is no way back I don't think I will ever be able to come of carb but if I could find the right dose to feel well and function I would rather go down that route, I see my endo again in 6 weeks and hope my bloods show some improvement, as I say when on 15mcg I felt fine for ages my endo does not think I was hypo when my t4 was 9.0 so I really don't know why I felt so cold and tired, back on 15mcg now they say eventually I will go hypo on carb but it could be years, sorry for the long post

  • That's not so bad then. I think it is maybe a bit difficult for GPs to interfere with what an endo has prescribed. Pity he wouldn't test your blood more frequently while you are getting sorted out. What are your other results like - do you have TSH and T3 done too? Have you ever had B12, vitaminD, ferritn and folates done? You'll feel better if they are all well up within their ranges.

    I know first time I needed an increase my GP wasn't keen to do it hence the amitryptiline - can't take beta blockers or I would have been given them. Next time she gave me a little increase to take every other day - well it was meant to be taken Monday, Wednesday and Friday but I went for every other day.

    I'm not surprised you feel terrible going up and didn't like that. When I was under and was SO cold. It was mid summer, warm and sunny and there I was wearing denims, a vest, t shirt, jumper, my winter quilted coat, scarf and gloves and still feel cold - at one point I was sitting amount people in the waiting room who wear wearing short sleeved t shirts. I stripped it all off to have bloods taken and no one seemed to think it was the least bit odd! I was even taking a hot water bottle to bed every night and had a blanket over the duvet. Once I had my levo increased and became less hypo which I suppose for you would be like having your carb reduced I went back to normal - that easily.

    Apart from wanting to hang onto my thyroid for as long as I can - even if they kill it off I will still have Graves - I just won't have a thyroid for it to attack - I don't want to have RAI because I think it is the easy, quick way for the hospital to get rid of you - once you are hypo they can pack you off out to be dealt with by your own GP. Or that's what it feels like to me.

    You were at a level where you felt good were you not? When I needed my levo increased used to say to my doc / endo 'I have felt good in the past and I know if I have a raise in my levo I will feel good again' and that usually worked. Try telling them that you have felt good in the past and once you get on the right dose you will feel good again. I kept a record of all my test results so that I knew where I had to be within the range to feel could. Could you do that?

    Hopefully someone who is being or has been treated by titrated with Carbimazole will come along and tell you how they are managing - there are people doing that on here.

    Put Carbimazole into the search box at the top of the page and see what comes up - you might find some helpful posts.

  • I agree they pack you of to your GP when you go hypo I will keep a closer eye on my bloods more often but GP reluctant to do it to often question !!! you say I will still have graves even if I go down the RAI what does that mean !! is it still a problem, or is it a matter of controlling with levo

  • As long as you have Graves antibodies you have Graves.

    I'm in remission just now and as far as I know it is possible to be in remission for a long time before Graves comes back and it comes back because the antibodies are still there.

    Have a look on the TUK website, there is a list of thyroid related books on there and it's worth reading all about it. There is a nice little book called Understanding your Thyroid by Dr Anthony Toft - you can get it from Amazon but many pharmacies and bookshops sell it, it doesn't cost much. There is also a lady called Mary Shomon who writes about Graves on her website - you can Google her - she also has a book out called living well with Graves that is quite interesting.

    It might be worth asking to be referred to a hospital that treats Graves with block and replace if the can't get the titration right. At least that way if you end up having RAI you will have tried everything.

    There are probably lots of people out there who have had RAI and are perfectly well and that could be you too.

    You haven't mentioned eyes, if you are having eye problems, bulging, dry, gritty, double vision etc - Graves Eye Disease, you will need to get that sorted out before you have RAI.

  • Frian, ideally FT4 will be half way to three quarters of the way to the top of range. Do they test your FT3 and TSH?

  • yes they do t3 t4 tsh but I,v only been given the t4 this week when I saw my endo the OCT TSH was 0.96 and T4 9.0 and told this was ok,, then it went up to T413.9 T34.10 TSH 0.96 beginning of Jan 20th Jan. it was T4 24.5 Jan I will get to see my GP next week for the full results and ask for another blood test prior to seeing the endo in 6 weeks, sometimes its 8 weeks before I get appointment so I don't want to wait that long how long will it take before I feel the affects of the increase dose

  • Frian, I'm afraid I don't know how long it will take to respond to the increase in dose but I think Carbimazole acts quickly so it hopefully won't be long.

  • Hi Frian, I too have graves and am on carbimazole. Like you, I went through a roller coaster ride for a long time. Can I ask, how often you have blood tests, what the reference ranges are and when have you been titrating the carbi?

    When titrating your t4 levels can initially fluctuate before settling down and can take a few weeks to actually show in your bloods.

    From my own experience it's essential to be regular with blood tests every 4-6 weeks while your fluctuating so much and only then should you titrate according to your blood results. Do you know what level you have felt your best at?

  • back in march I was on 10.mcg and my t4 was 17.0 endo then increased to 15mcg, in June my T4 was down to 13.9 so endo said to carry on as it seemed to be working I felt fine for a few months then Oct I started to feel tired and couldn't keep warm, had a blood test with GP which showed my T4 9.0 T3 4.10 TSH 0.96 even though my GP does not usually alter my dose while I am seeing my endo he thought I might try reducing to 10mcg again and see how I felt as he thought I might be going hypo, I was ok for a while then felt I was going hyper again all the old feelings came back and started losing weight ( you forget how awful that feels when meds are working well ) beginning of Jan bloods had crept back up to 13.9mcg GP said do nothing till I see endo 20th. Jan it had gone up to 24.5 at the latest bloods, so here I am again increased to 15 mcg. its been 4 days on the 15mcg and starting to feel they are having some affect but the yo-yoing is a worry, endo seemed reluctant to titrate other than 5mcg up or down, he said I was not hypo as my bloods had not dropped below 7 mcg but I know how I felt (awful ) he didn't like the idea of maybe titrating to 12.5mcg or alternating days to see if I could find a happy medium , I now wonder if I should have stayed on 15mcg and go hypo maybe It would have been better, I really don't know any more what to think , reading posts here I think I can titrate myself, obviously given enough time to see if it has levelled me out, I see endo again in 6 weeks (that could be 8 I never know ) at the moment I will stay on 15 mcg till I feel ok !!!

  • Hi, it seems like you need closer monitoring. One thing that strikes me is you went 4 months without a blood test resulting in you becoming hpo, this was too long for you with your levels fluctuating as they are.

    You said that when your t4 level was. 13.9 you felt fine so perhaps this is the optimum level for you to feel good. For me i feel ok with a t4 level of 14.2 reference range (9.8 - 18.8) and feel awful if I go above or below that. Do you know what your reference range is?

    I always have regular tests and only then will I titrate carbimazole if I'm below or above 14.2. It's important to remember also that carbi has a 2 week lag. I wouldn't suggest titrating yourself without having a blood test first. Depending on results then titrate. I hope this helps.

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