New diagnosis

Hi. I have been diagnosed with having an over active thyriod for a few months. I had bloods ran over having several lots of food poisoning. They picked up on ab-normal levels. I am on 20mg carbinazole. in the last 3 weeks I have started the lose weight, all patience with anyone, the ability to remember things and if I could sleep 24 hours a day I would still be tired. Other then the typical weight lost has anyone else had this? Is it my thyroid? Or my Graves' disease? Or the carbinazole? Or all of the above? It is starting to get me down.

8 Replies

  • Hi there Lib,

    Totally understand what your going through at the moment, it can be like an emotional rollercoaster. I'm afraid it's your thyroid / Graves' disease. It'll take time for the carbimazole to kick in for your levels to stabilise before you feel a bit like your old self again.

    When I was first diagnosed, I was utterly exhausted beyond belief whilst being wired to the moon, my emotions played havoc and I had to put my trust in those closest to me when I was being an absolute nightmare to be patient with me and understanding, when normally I'm the most laid back person. You will get there Lib, listen to what your body is telling you and rest up as much as you can..

    Can you give us your thyroid blood results including their reference ranges, it may be your carbimazole is needing tweaked especially if you are continuing to loose weight after being on it for a few months. When was your last blood test? You should be getting your levels checked every 4-6weeks and adjust the carbimazole by 5mg at a time according to your results.

    Hope this helps a little.

  • Thank you for your reply. Everywhere I have read always talked about having huge amounts of energy, I have none. I have never been good asking for help, always the one that runs around after everyone else, still trying to do so. Trying to be 'normal'!

    I had bloods taken last week. Ill call for the results. At the time of diagnosis I didn't have any 'real' typical symptoms. I certainly do now. I am not back in clinic now for a few more weeks yet and feel quite left to it.

    Are you balanced? How long did it take?

  • They say that but it isn't like that really, I was like Joy. I was utterly exhausted - words cannot describe how tired I felt. At the same time my mind was totally hyped up. It was a total nightmare.

    I lost a huge amount of weight - unfortunately as the books say it will be, it's all back on again now - I had absolutely no strength in my leg muscles, I couldn't get up off the ground or even a low seat without help.

    I was seriously grumpy, didn't want to do anything at all - well I was permanently exhausted, all I wanted to do was sleep, I used to start thinking about getting back to bed as I got up in the morning. Then when I git there I couldn't sleep because my heart was pounding so fast it woke me up several times throughout the night. I would also waken up dripping with sweat.

    I didn't think I would ever be normal again but I am or I'm as normal as I ever was or will be.

    My hospital treats with block and replace - carbimazole to block natural thyroid production then levothyroxine - synthetic thyroid to get you to where you should be, then when things are ok - took 11 months for me - they stop all the drugs at once and wait to see what happens - some hospitals titrate the amount of carbimazole you take.

    I took 20mcg carbimazole for 4 weeks and had a blood test but nothing had happened so I got a letter from my endo telling me to increase the carb to 40 mcg a day which I did - I didn't have another blood test though so by the time I got to hospital eight weeks later to see the endo I had become quite hypo which wasn't good so be sure to have regular blood tests especially if they increase your carb.

    You will feel better eventually. It doesn't feel like you will at the time. In the mean te read as much as can about your invite. Make sure you get copies of all of your blood tests with lab ranges. I kept quite detailed notes of how I felt at each stage of my treatment.

    Have your vitamins B12 and D plus ferritn and folates checked out - you want them to be near the top of their ranges. You might have to get this done privately - I had to have my T3 and vit D tested privately because the NHS wouldn't do it :(

    When I collected my first prescription fir carbimazile my pharmacist recommended I take 1000mcg of vit C which I always did.

  • Hi lib, yes I'm balanced now and down to 5mg carbimazole. For me it took a long long time for my levels to behave but apparently I wasn't a normal case. For a lot of people their levels can come down rapidly which is why it's important for 4-6weekly tests.

    It's a horrible disease and I remember what I was like, like it was yesterday but looking at how I am now I can honestly say to you, you will start to feel better. Theres not too many of us graves/hypers on here but you will find like I did, that folk understand exactly what your going through and will help you.

  • Hi Lib,

    I was diagnosed with Graves - nearly three years ago now. I was put on 20mg of carb twice daily, and noticed tingling in hands after a while. Blood T4 came down rapidly from sky-high 70 and flatlining TSH. I decided against block and replace and went for regular (monthly) blood tests and when bloods levelled out I reduced carb until after a year I was on 5mg every other day. I also took herbal medicine (urban fringe, Max Drake in Bristol) and still have monthly destressing acupuncture. I ditched wheat and ensure vitamins and minerals at the best levels. I came off Carb at the beginning of last year and so far, touching wood, I am in remission with just an annual check-up. I take note of how I feel (fine!) and know what to look out for. It can be so scary to hear you have disease with the even kind of name that makes you panic but it is possible to deal with working closely with supportive endo. I always took a notepad with me with my questions and concerns and wrote all they said down. I felt that made a remarkable difference to the way I was treated. All the best, x

  • Hi I am recently diagnosed hyper. I kept being told I had anxiety disorder and depression despite losing almost three stones in weight. I think the mood swings are a symptom of the illness. I am always tired and fatigued but I don't sleep well. I've been okay with the Carbimazole and am also on propranalol for palpitations caused by high heart rate. Hyperthyroidism can be either graves or something else causing it. I get my antibodies tested on my next blood tests as my Endo says it makes a difference to the long term prognosis. I think your symptoms are part of the illness and I have to say I have felt really really bad now for the past eighteen months. I also take VitD3 as I have a serious deficiency and my VitB12 is also low. It may not have been food poisoning it could have been gastrointestinal symptoms of the disease as I have used to always have a bad stomach, nausea and diarrhoea etc but that seems to have settled now. I know I have been an absolute nightmare to live with and I have been very grateful to realise how much my partner loves me as I have been really awful to him. I hope you will begin to feel better soon but do keep going back to doctor and tell them how you feel and ask questions

  • Hi all, thank you for your responses.

    Having spent the morning between my gp and consultant, they have agreed that may lastest bloods show my dose to be incorrect. Whist breathing a sigh of relief I spent the rest of the afternoon chasing up said prescription.

    Nevertheless tomorrow is another day and I will try again.

    thank you for your comments they helped a lot today.

  • Really glad to hear that Lib, I had a feeling you were on the wrong dose. What dose have they put you on and did you manage to take a note of your results?

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