Will there be a silver lining to the graves grey cloud :-(

Just a quick recap jan 14 told over active thyroid put on propanol and refered to Endo given carbimazole 5mg take daily, bit anxious to new meds ? Felt weird but cont them until , well. Propanol told to come off as carbi had kicked in April felt very strange and ended up in A&E , yes heart Racing put it down to panic attack ! 3nd time gave me Diazpam , meanwhile shaking like crazy I pushed for a water test ! Had a water infection so got antibiotics ! Meanwhile all this due to go on holiday I was terrified ! Managed to feel ok to make holiday after all my thyroid was in normal range & reassured by endo and just told to take diazepam with me in case , on holiday has a few good days , towards end started to feel nausea , with funny sensation in hands and feet!! Gosh was it the heat just have up keep reminding myself it's gotta be side effects from tablets muscle joint pain & nausea, kept feeling nausea after got back. Now it's been 5 weeks since back still on Carbi had thyroid bloods done june 16th TSH 0.94 T4 12 .previous month TSH 0.37 T4 13.8 I haven't a clue

Thyrotoxicosis due to Graves' disease , my grave antibody results came back negative .

Had to go GP today cos having bad digestive painful trapped wind told to take gaviscon , I didn't want anymore tablets to interfere with my Carbi , help I am putting on weight feel I'm slowing down ! On Carbi til jan 15 ! just feel awful , any light at the end of the tunnel please :-) need a hug oh and to mention also got a swollen gland on boob doc examined and I'm due on in a week want to sit and cry pain in trapped wind so painful right now is Carbi causing this ?

Last edited by

7 Replies

  • It may be constipation causing the pain which I found an issue whilst on carbi. Try something simple like senokot or even drinking more water. Avoid bread and sugary food. Simplify your diet.

    try to destress and relax the best you ca ie baths, books, yoga or a gentle stroll.

    the muscle pain is common too not sure if its the graves or the carbi.

    all will pass once you stabilise. It can take months if not years. Hang in there.

  • Thankyou greenginger , any words help at the moment gonna have an horlicks try and settle a little if can , I just want to rid of this feeling Iv enough with a bad period on its way next week and my birthday turning 36 would be lovely to get dressed up and go out and have a little drink , but more like my pjs at this rate , just

    praying I can see the day im

    In remission looking back at this :-) ThanX so much big hugs and will keep you posted oh my endo won't do any bloods now til sept surely I want July and August results too ?

  • ((( Binkynoo ))), it's worth having your ferritin and vitamin D tested as deficient/low levels can cause muscle pain. Tingling hands and feet can be a symptom of B12 deficiency.



  • I also take Carbimazole and initially I had painful cramps in thighs and calves, with legs that felt like lead. However the Endo suggested a reduction in Carb dose and this quickly sorted the problem for me. Reading these posings I count my blessings and realize that I am one of the lucky ones that are able to take this medication without too many nasty side effects, and actually feel reasonably well.

    I am due to come off Carbimazole 15mg later in November and I know I will have another battle on my hands as I will again refuse to have the RAI or Surgery options that keep being discussed but it's not what I want.... so it will depend on who I see in the clinic. This site has given me the confidence to speak my mind at outpatient clinic appointments and it has not always been a good experience. Still I will not be bullied and neither should you. Be kind to yourself.

    I know that as a retired OAP I can take things much more easily and I do feel very sorry for everyone who is struggling to bring up a family and cope with the stresses of the workplace too. Before retirement, and before I was diagnosed overactive condition, I worked for NHS on a very busy acute medical ward and I know now that I just would not feel well enough or have the energy to work at that pace.

    Take care Binkynoo. This illness brings many roller coaster days but with correct medication and healthy living it is possible to feel better. Listen to your body and don't push yourself or you will feel much worse than if you rest or relax when you are able to.

    Sending you big hugs for today and hoping that you will soon be feeling a little better.


  • Hi Binkynoo. I have Graves, sadly treated by TT eight years ago. (Def to be avoided at all costs but that is another story).

    I am not a Graves' expert but wonder if you are on too much Carbi, if you are now putting on weight. I am even wondering whether you need to be on it at all if your antibodies are negative. The late Dr Skinner knew many cases where patients were diagnosed with Graves, even had TT but simply had a temporary toxicosis or their blood tests had been read wrongly. Do you have the results of your first ever blood test when Graves was diagnosed? I also feel you should have more regular blood tests, at least monthly. I simply told my GP practice I felt ill and they did my bloods without quibbling. It was a complete roller coaster year for me as I went up and down very rapidly.

    If you could get results of all the bloods you have had, together with the reference ranges and post on here, people can offer better advice. At the moment without the ref range it is hard to be sure but your T4 appears to be low, meaning you need less Carbi and that may be why you feel so bad.

  • ((((Big hugs to you Binkynoo)))) graves is no fun at the beginning - not much fun full stop but mine did get better once I got my meds sorted out. I did get a pounding heart every time I needed an increase in my thyroxine.

    I was on a large dose 40mcg along with levothyroxine - block and replace. Wonder if you would feel better on B&R?

    Like Glo I'm one of the fortunate retired ones who had loads of time and no responsibilities so I was able to laze around a lot. Plus I felt very good when I was on carbimazole / levothyroxine.

    I did get constipated and found Fybogel really good - my GP had recommended it fir something else years ago - said it was very gentle and I think she was right - I used to stir it into fizzy water and found that made it more palatable than in regular water don't know if that's the right or wrong thing to do.

    Keep going, you will get there in the end. Might not feel like it right now but I'm sure you will. My first question on here was 'will I ever feel normal again?' And with time and good advice from this site - yes I do. ((((More hugs)))))

  • Hello everyone , it's me Binkynoo

    With round 2 !! well went to GP Thursday told swollen tonsil & told to take gaviscon for windy sharp pain etc , so nothi g helped last nite didnt sleep a wink !! My hands & legs felt like they were on fire & restless leg syndrome I was in a mess didnt know what to do so tired sharp pains & lots of wind awful . So overall bad night rang docs up again and said something not right ! Also rang my Endo secretary to sort having a full blood test done cos swollen tonsil feeling shocking , but also I am due on my period in 8 days ! And feel like 80 years old (Could be the reason? Something else to sort my menstruatal issue ) she said I could get them done explained not feeling good but I had to ring my doctor to auth a

    B12. & vit D etc !!!! I explained having tingly burning feeling on hands , the lovely lady who took my bloods today even said I could be deficiency on these ! I hope I have answers on Tuesday got an ECG too just to check I feel I'm havi g to tell doctors what to do so stressful , oh I'm now discharged & on the thyroid register, feel abandoned & suffering with no help kinda get on with it !!! I'm working tomo hot a little 1 day a week job that's all can do physically at the mo with my gorgeous little boy too , i just get upset how my health has to take up so much of my time , just want to have good weekend , & not end up in A&E just worrying abit about kidney & liver function waiting water test results too , so anxious all this wish it was like a cold rest medication & feel normal again :-) I am prob getting a little. Worked up I know but we all understand why being told normal range never normal though ha ha , yes i want to get my first ever results i will next week on diagnosis and put then on here , i also had some on ftom 2007 tjats when i last temember feeling great i coukd ask for those too , it's tough for me to get my head round , so before I forget my next thing to deal with is why I feel so like my muscles turned to stone & achey joints , is it Carbi is it my periods gonna get checked for RA too my mum has it !! Any thoughts anyone oh has anyone tried lemon balm is it good natural relaxing to take & also want some good vit d & b12 supplements :-) big hugs binky noo

You may also like...