Hyper to hypo

Hi,

Had undetectable TSH 5 weeks ago and was put on Carbimazole 20mg once a day. FT4s were 35. FT3 I think was 9. Had blood tested last week and TSH is now 16! FT4s are 7. So now hypo. GP has given me new prescription for 10mg Carbimazole. Have been achy and have had brain fog over last 5 days so makes sense I guess! GP wants to see me again in a month's time to test blood and re-evaluate Carb. I have an ultrasound I'm awaiting as bit puffy on one side of thyroid area.

Has anyone else experienced this on Carbimazole? Would love to hear.

I have also been diagnosed by IgA test that I have Coeliacs, just waiting for biopsy to confirm diagnosis. Explains years of anaemia and feeling low in energy.

Thanks,

Becky

10 Replies

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  • Hi Becky, I had this too. I am not that knowledgeable though compared to others on here, but can tell you what happened to me.

    Was diagnosed hyperthyroid in January and started on 20mg carbimazole. I can't really remember the results but I know my tsh was basically none and I think the t4 may have been 19? I was shaking, sweating, lost weight and had palpitations at this point.

    By the time I went for my bloods doing again 3 weeks later, I was sleepy and gaining weight and all hyper symptoms had gone. Bloods tests showed I had gone hypo (tsh 33 all I remember), so stopped carb and waited to see endo the following week.

    Endo useless, just referred to me as a "very interesting case" (I am also bipolar so take lithium which he did say can often cause atypical thyroid problems) and sent me off to get my bloods repeated two weeks later. I did this, by which point I could barely get off the sofa and was starting to resemble a balloon, and bloods showed my tsh had gone to 96. GP started me on 100 thyroxine.

    That was two weeks ago, and I can feel a difference already. Balloon face has gone and I am slightly less tired. Seeing gp again tomorrow to collect recent test results and hopefully increase thyroxine, as I still have zero energy, ache all over and am 1/2 stone heavier than I was.

    Interestingly, I too am coeliac, diagnosed 14 years ago when I was 20- maybe there is a link with these auto-immune things. Although a gluten free diet seems impossible at first, it is pretty easy to get used to, especially as all the supermarkets have such big Freefrom sections (my recommendations are DS- Dietary Specialities- frozen pizzas from Morrisons or Waitrose, Mrs Crimble's almond slices from Morrisons and Asda's own-brand gf bread. Also Udi cinnamon bagels from Asda :-) )

    I wish I knew what causes this shift from hyper to hypo- hopefully someone else might come along who knows :-) All the best xx

  • Thanks for your reply! Good to know that I'm not the only one going through this as it is quite freaky!

    I've decided to not take carbimazole for three days, and start taking it again at half the 10mg dosage the GP has said. Really scared of another visit to a and e with high heart rate! But also worried that TSH will get more hypo so have thought about just taking 5mg and seeing how I feel on it. Will increase it if I start feeling whizzy again. I hope you are feeling bit better, really feel for you as you are so hypo. These meds seem to work quite quickly though.

    Very achy today (like when you've got flu, even my toes are aching) and managed to get some sleep last night, but it's weird, still feel so tired like you can't get enough.

    Our son is 10 and has Hashimotos, but he's euthyroid so has never needed meds. It was only through him that I found out I had coeliacs as he was tested for it at the start of the year. He hasn't got it but has selective IgA deficiency and it was only as the consultant wanted my husband and I tested for it too (need to know for blood transfusions as can't have normal blood and tends to run in families) that found out coeliacs. So explains last few years of anaemia, low energy and feeling rough with the stomach problems that go with it, so I am very grateful to our son's consultant who is very good.

    One positive is that having experienced both hyper and hypo, will be in a better position to watch out for symptoms with him.

    Very interesting that you have Coeliacs too. GP said thyroid and coeliacs can go hand in hand. Something to do with the body mistaking gluten for thyroid as it's very similar.

    That's good that you are feeling a difference already and reasonably quickly. It's frustrating waiting for the next blood test though! Do you know what has caused yours? My GP is thinking it's autoimmune. I asked to be tested for autoimmune thyroiditis a couple of years ago as I suspected something not right (thought underactive) and TSH came back at 5.2, so borderline according to the GP. But when I next see GP will ask for antibody tests to see if Graves or autoimmune thyroiditis.

    Have to say I prefer the hypo feeling to the hyper! It's how I'm used to feeling but more so as it's a lot higher than usually is - has been 4 last couple of times.

    I'm trying to be positive as have heard from coeliacs that they feel so much better when they switch to gluten free diet. So shouldn't be too bad to sort. Thanks for your recommendations re the food, that's good to know. So can then hopefully concentrate on thyroid.

    Sorry to ramble on, but you know exactly where I am coming from!

    Becky xx

  • Subacute thyroiditis is a possibility. I had the same last May June. Tsh was almost undetectable with ft4 of 40 odd, was started on Carbimazole and then tsh rocketed to 20 odd and ft4 went down to 10 and had to switch to thyroxine. Did you have a flu/virus thing before this and a sore throat? Look it up and see what you think. It is pretty rare but... Worth asking the question. Typical phases are overactive when the thyroid chucks everything out, then underactive as it is damaged and then eventually (in most cases) return to normal

  • Thanks for your reply!

    That is interesting. I had my thyroid tested last August as thought it not quite right for a while. TSH was 4. Was 5.2 year before, and was 2.6 inbetween. So it's good to have had a benchmark. They were talking about thyroxine if it neared 5 again as borderline hypo and had hypo symtpoms.

    The only bad sore throat I had was at the end of September last year. I was getting very anxious October/November (did wonder if I needed anti-depressants at this stage) so think that may have been the start of it, as it continued after Xmas and got worse until heart started getting affected, shaky, and was admitted to a and e.

    Thank you for this, does kind of fit, will tell GP. I have had pain there since earlier last summer (so may have been earlier sore throat) and changed the GP I saw, as my old one was very dismissive and could not see slight puffiness there. This has got more so now, so my new GP sending for an ultrasound.

    It still hurts now, feeling bit uncomfortable.

    Anyway, enough about me! How are you feeling now? Do you know what has caused yours?

    Becky xx

  • Hope you get to the bottom of it. I don't know enough to be of much help but that was the cause of my big swing. I never had a thyroid blood test before this so I'm not sure what my benchmark is! I'm still on thyroxine a year on and have only just got near to the right dose for me - it's been a long haul but I'm getting there. Hopefully my thyroid will bounce back soon. Pretty sure mine was a viral thing caused by the flu. The sore throat was the give away for me - even got send for a chest xray. Was really sore for weeks and then felt as if I had something stuck in it before I started treatment.

  • Wow! Glad to hear you're nearly on right dose. Thank you for telling me about it. I haven't experienced a prolonged sore throat, but until I get tested for antibodies, won't rule this out. Are you feeling any better?

  • My sister also managed to get it but she didn't have the flu - causes can vary between viral and stress I think. I am feeling heaps better than I was this time last year thank goodness! It did leave me on my backside but with a bit of trial and error and not pushing things too much I'm getting back to normal :)

  • That's so good to hear! I am just pottering about at mo. Not doing as much as normal but it all feels so much of an effort, especially in the mornings to get going. I've had sleep, but just doesn't feel enough! Weird! I've got an ultrasound coming up soon so that will be good to have it checked. Did you get referred to an Endo, or did GP manage yours?

  • Only just seen this! How are you doing? Have you had any test results back yet? I saw an endo twice and have been managed by gp since.

  • I'm doing fine ta. Thanks for replying! I am feeling a lot better now. They stopped my Carbimazole as my TSH went to 16. Since then it crept up to 15, and on my last test two weeks ago, was 11.93. I just hope it stops between 2 and 3 so not still hyper! I had an ultrasound, enlarged but all ok and I've been referred to an Endo. Saw Gastroenterologist who got GP moving. As an IGA test (just found out our son has IGA deficiency back in Jan) had shown high levels, GP jumped to conclusion I probably have Coeliacs. When I saw Gastro, he said it may not be but will do biopsy anyway, but sent me off there and then to have blood test for thyroid antibodies, as this could be why IGA level high and not because of Coeliacs. So getting to the bottom of it now which is great! I do have thyroid antibodies, so I may have Hashimotos like our son (and hopefully not the Coeliacs!).

    I will know next Monday if I have Coeliacs or not so quite excited to get this sorted out.

    I was terribly achy, especially my knees and legs, when TSH was high. As TSH improving, symptoms are getting a lot better. As I said before, just hope it isn't still hyper. Loads less pain in thyroid area now, still odd twinge and bit of discomfort but probably getting used to it!

    I would really like to know what my thyroid antibodies mean ie Graves or Hashimotos or autoimmune thyroiditis. That's my next step!

    But just happy to be feeling a lot better, still not 100% but haven't felt great for several years now to be honest, but thankful feeling better than back in March!

    How are you feeling?

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