Carbimazole 40 mg

Hi ,

I got diagnosed with graves recently as when I first went to gp blood pressure was high and resting pulse was 122 . After I got blood test results back my T4 was 86 and my TSH was 0.01 . I have been prescribed carbimazole 20mg initially and 80mg beta blocker since increased to 160 mg beta blocker and 40 mg carbimazole . I am gaining weight at an alarming rate and I look like I am about to give birth as my stomach is so swollen . I feel like crap , extremely ratty , emotional , hot and sweaty and cannot seem to do much .Usually I am such a bubbly person but I feel like that person doesn't exist anymore .I am 44 and got diagnosed 17th of May . Anyone else felt bad on carb? . x

28 Replies

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  • Hang in there if you look at my first post I headed it carbs not working I really did expect to take mess an feel better in week when I first went on carbs I went hypo

    I think this pretty much seems to happen to everyone then they slowly drop it it's been a year of ups and downs and you will feel like you are taking 2 steps ford and five back make sure your vits are checked don't try to drop carbs yourself to quickly endo tod me that they need to stabilise it then drop it otherwise when you stop you have less chance of remission

    I have been to endo today and taken off carbs hopefully I will stay in remission

    Best of luck

  • Thanks for that as that's made me feel better and I hope you stay in remission .

  • Your welcome just remember this site is so helpful with sound advise and most importantly support

    No question is to trivial if your worried post at least when you find out that someone else has had same problem you don't feel so scared and only

    Best of luck

  • Thanks , I am just fed up and the weight gain is doing my head in ! .

  • When I wa weighed today I had lost 6 kilos I haven't been dieting as getting well is your first priority strangely though I was one of the small percentage of people that are hyper would put on a load of weight kept eating Mars Mars as I thought tremors were low sugar it will come of easier when you are stable in meantime put away your scales and give your body time to heal like fruit and nut case I'm older in early 50 it must be so hard for you having a three year old

    I hope your older children are being supportive

  • Hmmmm the three nearly four year old is better than the teenagers ! . ☺

  • 6 kilos of weight loss is rather impressive ! .

  • Make sure you always get a print out or at least a note of all your test results with the lab ranges - they are the figures in brackets next to them. You can post them on here and people can advise. Also it helps to have your B12, vitamin D, folate sand ferritin checked out too - again get the results with ranges and you can post them for advice. You want all of those to be high in their ranges to feel good.

    When I started taking carb my pharmacist came out and explained what to look out for and said to be sure to take vitamin C with them so I used to take 1000mcg vitamin C with zinc every day.

    I was seriously grouchy at the beginning - I'm asthmatic so I couldn't have beta blockers to calm the palpitations which was a pain - I went about snarling at people, short tempered, really grouchy, tearful. Awful really!

    My first post on here was to say 'will I ever feel normal again?' The answer was 'yes' and indeed I do.

    I was diagnosed in November 2012, started on block and replace treatment - I started on 20 much carb - was on that for a month. It didn't make much difference so I got a letter from my ends telling me to double it. I dud that for two months by which time I was hypo! I really should have been tested again after a month. Anyway, to cut a long story short, all that was fixed, there were various ups and downs during my treatment but eventually my bloods were normal enough and my treatment was stopped in November 2013 and I've been in remission ever since.

    Just make sure you don't stay on 40mcg a day for too long without being your bloods tested regularly, I found that the hard way - I went from hyper to hypo so fast my hair fell out all over the place and my fingernails disintegrated to the extent I could hardly use my hands. Once I was sorted out that all resolved itself but I found being hypo was worse than being hyper - believe it or not!

    I was 64 when I was diagnosed so my kids had left home which meant I was free to lie around and do nothing. It's good if you can get a lot of rest. Sort out your priorities and do as little as you possibly can. You are really quite ill with Graves so be kind to yourself and don't do anything unless you really feel you want to - ignore the stuff you (or others!) feel you 'should' do.

    Hopefully you will feel better soon. 😊

  • Thanks for that as obviously I am new to all of this and I have two teenagers and a three year old and clean a high school . I am contemplating giving this up for the time being as I get seriously tired just doing twenty mins of housework ! . 😢

  • Gosh you will be kept busy it must be very hard. I'm sure I probably went to bed earlier than your three year old most of the time. It was the tiredness that got me most. We've have some very elderly friends who had more energy than I had. Hopefully you can work something out.

  • Yes I have felt tired but then at night I am restless and don't sleep well . I have absolutely no idea what that's about ! .

  • The not sleeping well but feeling exhausted is typical of Graves and as your bloods improve hopefully so will your sleeping. Graves sort of sends everything into overdrive so its hard to switch off but at least rest when you can.As for your cleaning job I agree you probably need to take some time off work until you start to feel better x

  • Do research about causes of auto immune conditions, learn everything you can.

    Weight gain is hypothyrpoid and i'll bet you are on too much Carb.

  • Yes the weight is flying on and I am not eating anymore if anything I am eating less and I also feel very lethargic But I had my bloods done on the 2292nd of June and T4 has come down and is 31.4 so I don't understand . Thanks for the reply .x

  • Meant 22nd of June !

  • I wonder what your free t3 is like..maybe you don't convert and have a higfh reverse t3..google it. I have heard of hypers gaining weight and maybe this is why.. i hope you find the help you need.

    Is your heart racing, palps or do you have anxiety..any hyper symptoms?

  • Hi , I don't know what my T3 is doing and I go for blood test on the 15th of July and before I went on the beta blockers my blood pressure was high and my resting pulse was 122 and yes I had palps but on 120mg of propranolol so that's all calmed down.since getting my diagnosis despite my T4 being 86 which I am told is high , I have just continued gaining weight . I was 9st and I am now 10 1/2 ! . I have just had a look at next blood form and it asks for hepatic profile , TFT , free at T4 and TSH and TSH receptor antibodies , renal profile and FBC. Oh and initially I couldn't stop talking really quickly ! .x

  • The endo said they are sure I have graves disease .

  • it's so odd, being hyper and gaining weight. That would be me, if i had Graves, the weight had never been an issue in my whole life and now i fill up with fluid..just look puffy, around eyes and jawline ..look ill. I am sensitive about weight, so of course, i have an issue with gaining now. If i was all about hair, i am sure it would fall out.

    It is all so confusing and very hard to tell the difference between hyper and hypo sometimes. High heart rate and bp for both, same weight issues etc.. Thanks for sharing this.

  • I too am really brassed off with the weight gain and I'm puffy and could pass for being 9 months pregnant so I understand how you feel .x

  • Hi ianswife,Sorry you are feeling so rubbish! I also have Graves and felt just as you did in the beginning.You have been given lots of Information and good advice already but I just wanted to reassure you that there is light at the end of the tunnel.Your t4 was very high so no wonder you have felt so unwell.Get as much rest as you can even if you can't sleep and get your blood tested regularly .I am also now in remission and you will slowly start to feel better,take care of yourself ,sending a hug Pipps x

  • Thank you so much , it's great to know things will get better .How long did it take before you started to feel better ? . x

  • To be honest I started to feel a bit better a couple of weeks after starting the carb but my T4 was not as high as yours so it I suppose it makes sense that it will take a bit longer for you to level out.Have you seen the Consultant yet? Although it didnt happen to me I know some people on 40mg of carb can end up going the other way and becomd underactive.This is why its very important to insist on regular blood tests,get a printout of the results and post them on here,There are some very knowledgeable members(I am not one of them -lol) who can advise you.Hope you start to to feel bettercsoon x

  • I don't know what is happening at the moment as I don't want to do anything and feel like I have no energy . I think my gp is getting fed up as I have not been to work since the end of May but I clean a grammar school and I am just not feeling up to it as it's hard work . My T4 is currently 31.4 and I am on 120 mg of propranolol and seeing gp tomorrow as he wants to increase propranolol to 160 mg . Thanks for all help .x

  • Just to let you know it took at least 3 months for me to feel

    Better I did have good days sometimes a couple and I would think yes this is it and then have a set back it is avert up and down illness as it is is to go over medicated

  • Yes I am a little worried about going hypo . x

  • Hi, sorry you have been feeling so unwell. I was diagnosed in March so am a couple of months ahead of you! My T3 was high with no TSH detectable and it is being treated as Grave's as I have other autoimmune illnesses and also eye symptoms.

    There is light at the end of the tunnel and things will get better! I started on 20mg Carbimazole a day with 40mg propranolol 3 x a day to calm shakes /pulse. I am now off the propranolol completely and on 5mg Carbimazole a day - seeing how that goes. It took 3 months for everything to be back in normal levels with my carbimazole being gradually reduced. Hopefully I can stay at this dose for the next 12 - 18 months and then see how I get on!

    I still feel a bit fuzzy headed but can tell that the old me is coming back!

    Hope things keep improving for you and you start to feel better soon x

  • Thanks for that and I am glad that the old you is slowly returning . I hope that this continues for you and it happens to me soon . x

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