New to this, any insight will be gratefully received.

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Hi, I'm after a little knowledge on this subject. Here's a small outline of my situation, back in October I started feeling really down in the dumps, heart palpitations and racing pulse, dizzy spells like I've never known, jerky muscle spasms and restless sleeping patterns. I popped to the doctor who did a couple of blood tests and my thyroid levels were slightly high. The only result I was given at this point was my T4 was 24.5 and I had a suppressed tsh?. These symptoms persisted for a couple of weeks and the doctor started me on carbimazole, a daily dose of 5mg once a day, I took this for less than a week mainly because the pharmacist had panicked me by saying it has huge side effects and whilst suffering from health anxiety (I.e the thought of having any illness scares me) at the beginning of December I had to go back for another blood test and actually by this time my symptoms had completely disappered to my relief and was forever hopeful my thyroid results had returned to normal. Anyway a phone call from the receptionist had confirmed my thoughts as she said my T4 was back within range at 18.1. Forward a month to January and still feeling normal I had my appt with the endocrinologist who then put the fear of god in me by saying yes my T4 was 18.1, a free T3 of 5.8, TSH continues to be suppressed but strangely (her words) my TPO was >600 so apparently I'm making 20x the amount of antibodies than I should be, she informed me the range is between 0-38. So now I have to have 3 monthly blood tests for a year as she suspects I will swing between hyper and hypo before settling on the hypo side and I have to watch for coeliac, anaemia and low cortisol levels. No medication has been given until she knows what it's going to do. Since last week I have felt dizzy with palpitations but I suspect that is my anxiety kicking !!!! I'm not sure if it's relevant but I take 20mg of citalopram and 40mg of propranolol as and when I need it. Apologies for the very long post but any insight would be gratefully received. Thank you.

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  • Posted

    Hi Olivia,

    I suffer really bad from anxiety, lack of sleep & severe depression I also have had a panic attack & heart palpitations in the past & it was the worst experience of my life. I can be very bi polar as well and I personally believe its down to my thyroid problem. There isn't much good advice on the web. With the medication you are given does it seem to work at all? as ive been very hesitant to take it off the doctor and try and fight through it but it does cause me many problems in everyday life especially my work life. I feel this problem is noted as serious enough as it personally has such big effects on life. To stop your thyroid swelling don't eat brocolli or strawberrys apparently there is something in them that causes the thyroid to inflate. As for being scared of ilness I seem to constantly finding myself looking up things and its ruining my life and people around me because i'm constantly anxious and start fearing the worst. Fortunately im not usually a worried person im a very down to earth 'whatever happens happens' sorta guy

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  • Posted

    Hi

    You sound like you developed Graves disease like I did, in that your levels though high are not seriously elevated but you developed symptoms like I did. I think because your dose is low, you will not experience side effects to the drug unless you are allergic to it. I don't notice any side effects at the low dose of 5 mg that I am on. And my T4 and T3 returned to the normal range once I was on a low dose of Tapazole which is the drug methimazole which I am assuming Carbimazole is. Before my diagnosis was confirmed, I was taking Propranolol for the rapid heart beat and I was told it was not to be taken p.r.n. but rather to be on a regular dose until my diagnosis was confirmed. Though my T3 and T4 returned to normal immediately once I was on 5 mg of Tapazole, my TSH remained at 0 until I added L-Carnitine to my treatment regimen. I found regular L-Carnitine did not work as well as Acetyl-L-Carnitine which brings my TSH up astoundingly well. So well in fact, that I think even a low dose of 250 mg per day would do that. I think it would also help to get rid of the antibodies. He told me mine are gone now. This is available here in Canada in Health Food and Nutritional stores.

    But I would heed your doc's advice and get your blood results done very frequently. I am going to do mine once a month and adjust my L-carnitine accordingly, i.e. if it goes up too high, I stop taking it, if my TSH falls too low, I start taking it again. I stay on the same dose of 5 mg of Tapazole.

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  • Posted

    Wow, Olivia, I'm glad it's not just me who is terrifired of Carbimazole & the side effects - I'm on 30mg and just wish there was something else to take that isn't as scary. Your symptoms sound the same as how mine started too & was only diagnosed with Graves disease just over a week ago so is all new to me too. I wish I had a doctor like yours, who told you things - all I know is I have bad antibodies attacking my immune system but had no idea about these T levels until I joined this group, I don't know what mine are and I still don't fully understand what this condition is actually all about - just hope I can get a grasp on it like you have :-)

    I can't help with advice but I hope your blood tests come back as you want them to be and wish you well.

    Good tip about strawberries and brocolli! I'm going to try Acetyl-L-Carnitine and see if it helps, too

    Jacky

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  • Posted

    By the sounds of the side effects for Carbimazole I shouldn't try taking them as I already have a lot of the symptoms anyway. I want something that don't have as many possible side effects.
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  • Posted

    Hi, I was also recently diagnosed (~1 month ago) and started on 20 mg Carbimazole, then 30 mg and now 40 mg/day since the other dozes didn't seem to work.

    I have not felt any side-effects from the carbimazole and I hope there will not be any.

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  • Posted

    Hi guys unfortunately since I last wrote a comment on here i've started getting what I usually get which is the worst, a feeling of tight pain of my chest and diaphragm & not being able to catch my breath. does anyone usually get this and does carbimazole stop it at all if so? please reply promptly will be much appreciated as I'm looking to book doctors asap and ask them to prescribe me them.
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  • Posted

    I was not given Methimazole until my specialist finished all my tests and confirmed my diagnosis. However, I was given Propranolol immediately for the rapid heartbeat. If you have Emergency Departments in Britain like we have in Canada, I would urge you to go immediately.
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  • Posted

    I would go to doctors straight away - I don't know if Carbimazole stops those symptoms per se, but I used to get what you describe but haven't had it since I've been taking Carbimazole - I still get the thudding sensation though and wish it would stop

    It might be anxiety causing the tightness? I'm guessing Citalopram would help as well? I used to take it but stopped but am thinking I should go back on it

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  • Posted

    Olivia - I was reading about Graves and how it is often misdiagnosed and is actually Hashimoto's disease (the more common than Graves apparently) - it's the swing from Hyper to Hypo, first symptoms from blood tests 'confirm' Graves disease but it can be what's called Hashitoxicosis - the period between going from hyper to hypo. I found it interesting that Hashimoto's disease isn't considered by doctors on the first blood test and is just diagnosed as Graves if TSH is low

    It says 'if you are told that you have Graves' Disease or hyperthyroidism, and are rushed to have RAI, insist on blood tests for various antibodies, as well as imaging tests, to demonstrate that you do indeed have Graves'/hyperthyroidism, and are not just experiencing temporary Hashitoxicosis'. I thought of your symptoms and wondered if that was what was happening in your case? That it's Hashimoto's father than Graves? It'll be intersesting to see what my next blood test reveals :-)

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