I`m confused

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Hi I`m confused with my Graves and could do with some help please. I`ve been given an endo nurse who sends me a blood form, I get the blood taken and then the nurse phones me to say what amount of carbimazole to take. This happened and she told me my levels were spot on- right in the middle where we want them!  I was pleased but said that I`ve not been feeling good with aching joints, sweating and very tired and dizzy. The nurse doesn`t think its the thyroid because of my good levels. I then go to see my GP who  gives me a checkover and he doesn`t seem to be able to diagnose anything.

My TSH is 1.72 (0.35-3.5)

thyroxin 13 (8-21)

I`m 11 weeks in with taking carbimazole and although I feel better than when I was first diagnosed - I`m certainly not back to normal yet. The endo nurse seems to believe I should be ok now.  Does it take a while to get back to normal?  Many thanks x 

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  • Posted

    My personal experience is that your blood results don't a!ways match your symptoms. I have felt all with top end of normal T3/4 with far too low TSH.

    Likewise I have been really symptomatic with mid range T3/4 and TSH around 1.0. It has caused huge problems as Docs have dismissed my symptoms as " must be something else " but there is nothing else !

    This was aggravated by me moving home and country and getting an awful new GP. Eventually, in desperation, after being hospitalized twice (due to heart problems and a gastric bleed caused by anti inflammatories ) I self medicated on Carb I had at home. Was improved within 24 hrs and symptom free in a week ,- this is exactly how the Carb worked for me when I was first diagnosed hyperthyroid. Now I self medicate using L Carnitine but if I get a flare up I immediately take Carb for a week. Need it less and less with the Carnitine. My blood is good, my heart rhythm perfect, my blood pressure ( which was toxic) is 117/60. I am 56yo,, first diagnosed Oct 2010. Finally well !!!

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  • Posted

    Hi Joy,  

    This seems to be very cpmmon judging by comments others have left on different threads.  All the medical profession has to go on is your blood results, they seem to be either disinterested in how you're actually feeling, or without anything else to offer if you're still not feeling great.  Add to that the fact that no-one can understand how it feels to have Graves until you actually have it, and you'll find it difficult to get anyone to take you seriously!  I've been seeing my endo for almost a year but she still just goes on blood results.  The first time my results came into the 'normal' bracket, she was really pleased but I still felt rubbish - no energy, aching muscles etc.  All she could say was that there were a lot of viruses about at the time and I might have picked one up.  No help at all.  I started taking L-Carnitine and have felt better since.  Still not bouncing around with energy but better than I've felt since diagnosis.  I have also been better since my Carbimazole has been reduced and my levels have risen a little bit.  I asked my endo if it's possible that my levels have always been on the high side of normal and she said that it was so what is considered high for some people could be normal for me.  

    This unfortunately isn't the type of condition that you can totally self-medicate but I believe that you can take some responsibility for your own health and remember that it's you that has to live with this 24/7, not your endo.  I am still taking L-Carnitine and also watching what I eat - trying to get more veggies in and less gluten and sugar - which seems to help.  I'm hoping to get off the Carbimazole completely in the next month or so and see how I go.  It's been a year since I was diagnosed and it's certainly been a long hard slog but this forum has been invaluable and I shall continue to keep up with it in the future.   

    Hope you feel better soon. x

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  • Posted

    Hi Joy,

    It does take a while to get back to normal. Without putting a downer on it, although it's a long time to feel unwell, you have only been having treatment for 11 weeks which isn't a long time to recover. Your blood levels may be 'normal', but there is a lag between normal thyroid blood levels, and feeling ok. When you are hyperthyroid your whole system is working overtime, plus quite often sleep is disturbed, your body has been depleted and is exhausted. It may take you many more months before you feel anywhere like normal.

    Don't dispair though, there is lots of great advice and support on this forum, it's been helpful for me and if nothing else you realise you are not the only one going through this- you are not going crazy! Rest as much as you can and take advice on supplements.

    Good luck and hope you feel better soon.

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    • Posted

      Thanks Looby

      You`re right at times I`ve felt as though I`m going crazy- as I expect many of us here have. I think I`ve been expecting too much too soon and thanks for the re-assurance that it can take some time yet to feel better. 

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  • Posted

    Thank you both Linnet and Karen- what a relief to hear you were both much the same. Knowing this has helped as I was beginning to wonder what else could it be?  I`ll lower my carbimazole and see how I get on with that. I`ve always been a hyper type person and I believe that my body prefers that. I`m interested in L Carnitine but at the moment I`m taking warfarin after ending up A Fib from the Graves, and I`m not sure how they will react. I take Selinium with the consultants advice and I`m sure it`s helped with my eyes as they were inflamed at the beginning- and feel much better now. Many thanks again

    Joy x

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    • Posted

      I`m not sure Linda, I had A-Fib just after I was diagnosed with Graves, so they put me on warfarin. Since then my endo has sent me for 2 x ECG`s and arranged a 24hr heart monitor to be fitted two weeks ago- I know the ECG`s are ok as I asked the nurses taking them- they said there`s not even sign I`d been in A-Fib. I haven`t heard about the 24 hr moniitor yet but my endo has also arranged an appointment for me to see an eye specialist next week- and I believe she`s waiting for all these results to come back before she sees me next - and we discuss the way forward. I`m hoping I can come off warfarin after that appointment. Thanks for your reply

      Joyx 

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  • Posted

    For starters: why aren't you seeing the endocrinologist?

    What antibodies tests were run? The results?

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    • Posted

      I am seeing an endo CA-Lynn, but while she`s waiting for different tests to be carried out, I have a thyroid speciliast nurse who phones as support.

      I haven`t asked them

      thanks for your reply 

      Joy x

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