Feeling lost

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Hiya all hope you are all feeling okay, my carbimazole was reduced 4 weeks ago from 30mg to 15mg things going well until the last week and a half my hands have tremers again increased heart rate and now I have had a miagraine the past 2 days! Im due my blood test to check my levels on monday my guess is that they are off! I was diagnosed witj graves in August 2014. I know it can take a while for things to settle down its just thrown me feeling like this again. An other thing is who do I speak to for professional advice about how I feel I was never giving a contact number to get intouch with anyone I just feel you get thrown tablets to sort it out but down get the physical/emotional support As you can probably tell im not feeling to good these past weeks! 

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    Hi Jennifer.  I am sorry you aren't feeling well.  I think it is important for patients to become self-empowered.  To do this, you need to learn as much as you can about your disease.  There is a lot of information on the web and lots of patient support sites.  I find that knowing what my blood tests mean, what the norms are for each test and having and keeping a copy of all my tests has helped me immensely.  It would seem that at 30 mg, your values had improved such that the doctor lowered the dose and now the values may have gone up again.  It is a tough balancing act.  Others on Boards such as this have also watched their diet, avoiding gluten and aspartame and eating healthy.  Lots of literature on the net about this.  I found that taking L-Carnitine and Acetyl-L-Carnitine helped me improve my blood results immensely even on a very low dose of meds.  Carnitine is an amino acid that is normally present in the body but gets lost from the muscles of hyperthyroid patients.  To document this, I asked my physician to do a Total and Free Carnitine test and confirmed I was deficient before I started on these supplements.  That said, while they worked well in normalizing my values, I had to monitor my values fairly frequently and adjust dosages frequently, at least once every month or six weeks.  Others have also added natural supplements like Bugleweed, Melissa and Motherwort and found them helpful.
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  • Posted

    Hi Jennifer

    Sorry to hear you`ve not been too good.  Have you seen an endo yet?

     I`m asking because a similar thing happened to me and my GP didn`t seem to know what to do- when it was obvious my carbimazole was reduced by too much. 

    So I phoned the endo`s secretary to ask advice. The secretary was only too pleased to help and asked the doctor`s advice for me. I called back 2 days later and was told to take 20 mg of carbimazole instead of 15mg. Hope this helps and you begin to feel a bit better soon. x

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  • Posted

    Hi Jennifer,

    Can't really add much other than what has already been said.  It sounds like your dose was reduced by too much too soon.  I was diagnosed last September and was also started on 40mg for a month then reduced to 30mg for another month then down to 20mg then 15, 10, 5 and now I'm on 2.5 (well, 5mg but every other day).  It's over a year now since I started taking carbimazole and I was hoping to be off it by now but, equally, I don't want the symptoms to come back by my stopping taking it too soon.  You don't say whether your GP has referred you to an endocrinologist yet but, to be honest, I still felt that they were only interested in looking at my blood results and adjusting the dosage, there was no emotional support at all.

    Following advice on this board, I also experimented with L-Carnitine and it seemed to make me feel more normal.  I'm not sure what effect it had on my bloods but I definitely started feeling more like myself when I started taking it.  I think the feeling that you've done some research and done something for yourself is immensely helpful psychologically because this disease just takes over your whole body.

    Hope you feel better soon.  Keep visiting this forum because it's a mine of information and support. 

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    • Posted

      Hiya yes I do see an endo only seen her twice first time was because blood test showed overactive thyroid so was refered to endo she blood tested me and found it was graves. She put me on 30mg of carbimazole asked what all my symptoms was ans so on. Next appointment was 1st Sep I really did feel an improvement by this time so she reduced me to 15mg because my recent blood work showed thyroid levels where normal range few days after the reducement I started to feel really axious and had a very big panic attack what was not nice at all few days after that things settled down for around 2 weeks but past week a few symptoms are creeping up new one im experiancing is sore eyes .
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