Carbimazole seems to have stopped working

Hi

I'm new here and hope someone can help me understand what I can't work out from websites I was diagnosed 8 weeks ago with over active thyroid I have been put on 40mg of propanol

And 40 mg of carbimazole

I'm really confused though because I have been in loads of pain

Plantas in my feet hip pain knee pain stomach ache in the begining I was so weak I had to crawl upstairs on hands and knees but everything I read on internet says pain in joints is hypo

I have had thyroid uptake scan and go for results of that and immune bloods on 16 sept

I have been on meds for 6 weeks now and yes there has been a lot of improvement

But I still have lots of leg pain neck pain and I'm still up all night and I do mean all night also I'm still so hot I'm frighten it means something else is wrong

I'm also worried about ovarian cancer as one web sight said people with overactive thyroid have 80 percent more likely to get it

Sorry to sound like a wimp but it all seems so much

10 Replies

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  • Dear Rush, am so sorry to hear you're so unwell. Have no answers for you, but wait a little while. I received some very helpful, supportive advice from posters on this site. Please try not to worry & to relax, even tho that seems the hardest thing to do .... Very much hope you start feeling better soon ..

  • Thanks for your reply I was so excited as at about 4 weeks I had two days with no pain and thought great I'm getting somewhere now everything is creeping back

  • Hi Rush2112, Sorry you feel so bad. I had a very overactive thyroid by the time I was diagnosed, although I had been complaining to various GPs in my practice for months. This taught me not to rely on them to monitor me and so as soon as I felt things were wrong, I asked for a blood test. Turns out I had responded so quickly to Carbimazole, I was going hypo. I was taken off the Propanol, as no longer necessary and my dose of Carbimazole was reduced. I suggest you call your GP tomorrow and ask to have a blood test right now. Do not wait for your endo appointment. Keep a note of all results of tests with the date, so you can chart your progress. Take control yourself. your GP should help you as much as possible in between endo appointments.

    By the way, my joints and muscles ached all the time. It is a myth that only hypo people have this problem.

    Abother point to have checked is your iron levels. Being hyper uses up iron in your body and you may be depleted. Ask for a test for serum iron and ferritin. I expect other vitamins and minerals also suffer. You might also ask for B12, Folate and Vit D just to be sure. Low levels could be making you feel worse. All levels should be high in the reference range. If you are not sure, post results here for advice .

    I hope you soon start to feel better.

  • Thanks hennerton

    I don't think I have gone hypo as the reason I can't sleep is the feeling that I'm a car in idle The pain in my legs feet and neck have been there since the beginning

    In fact the endo is checking my piturity gland again as he said pain is not usually

    A hyper symptom my bloods are as follows I don't know the ranges as this is from a copy of letter from endo to my gp

    Tsh 0.01

    T4 31.8

    T3 15.2

    Creatine 65

    Calcium2.3

    Cholesterol4.2

    B12 388

    Vitimin d 115

    Esr 16

    Is it normal even on medication to have good and bad days

    I think I thought it would be like taking a antibiotic

    And once it kicked in I would just keep going forward

  • You were definitely hypo and that needs to be brought under control.

    I can't see antibodies on there - did you have your thyroid antibodies measured?

    I'm also wondering if your adrenals are playing up, as you can't sleep. I'm sure that hyper can cause that, but it might be worth ordering the saliva cortisol test from Genova UK thyroiduk.org.uk/tuk/testin... to see what they are doing.

    If your endo is correct in suspecting pituitary issues it is possible that your adrenals could be hyper too and you are producing too much cortisol. You could try something like Holy Basil or Seriphos to see if that helps you sleep at night.

  • Sadly that 'tired but wired' insomnia can happen when hyper OR hypo. I'm hypo now (started off hyper) and finding a sweet spot with meds where I get regular restful sleep is my Holy Grail (and as hard to find). And I still run hot.

    What you're on does sound like a lot of medication. They may have overcooked you ...?

  • When was that blood test? If it was a few weeks ago, you will have changed by now and as Humphrey says, there is often little difference between hypo and hyper symptoms with regard to sleeping. Do not use that as the basis of thinking you are still hyper. You are on a hefty dose of Carbimazole and it is likely your levels are much lower now. I slept well when I was hyper and not well now I have no thyroid, so one can never tell what to expect of this disease.

    Yes, sadly it does seem normal to go up and down.

  • If you post results it is most helpful to put the ranges with them as they vary from lab to lab. I have often had results in letter form and the ranges haven't been given but if you ring up the hospital where the bloods were processed then they will be able to tell you. Different labs often have different ranges hence the need to document them.

    I'm under active but I'm sure someone with helpful comments will come along.

    But welcome to the forum. I am sure you will learn a lot, I know I have. Never be afraid to ask any questions, we have all been there!

    Good luck with your treatment.

  • I completely understand your feelings. Keep a note of how you fell on a weekly rather than daily basis ie in spite of inevitable god/bad days make a weekly overview. You can respond to that be going back to your go. Be kind to yourself make sure you have a laugh, that helps me more than moaning, which I do too much of, but watch the comedies you like, soppy films etc. try to eat as healthily as possible but do not deny yourself either. Try to walk or do jigsaws, or listen to -or play music. Distract yourself in other words but still focus on gp sorting you out. I finally am seeing an endo after gp said could I accept not feeling 50 per cent better. My response - would you say that to a diabetic? Action. So makes me better in my head even if not my body. Yet. Hope my rumblings strike a chord and hope you feel better - completely - soon.

  • Hi

    Thanks for all your comments it feels good to share with people who know how it feels my endo took blood to check for antibodies he is on holiday for a month so I'm not seeing him till the 16th he is really lovely and has been the only doctor to take my symptoms seriously since this all started I have private insurance through work so I'm lucky I was sent to a rheumy first as my daughter has sle lupus but he was awful he didn't examine me at all just squeezed my arms and legs and said fibromyalgia

    And sent me packing if this was private Id hate to be his nhs patient the other thing I'd like to know is I don't have a goitre

    Do some people not get them

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