Hello everyone, Im so pleased to have found this site i...

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Hello everyone, Im so pleased to have found this site it has helped me enormously to have more understing of this terribly debilitating disease. I have been taking levothyroxine for the past 7 months. I dont feel I have experienced any improvement apart from my hands dont feel so dry. Im still so lethargic and have absolutely no energy whatsoever. I mean even the smallest of tasks (ie hoovering ) completely wears me out. Im so overweight {4 stone } and theres no sign of me losing any. My levels are not that high, but my GP says I might be one of the small minority who feels better with very very low TSH levels. Besides extreme tiredness I also feel really really breathless. I havent read anyone else reporting this as a side effect. I would really appreciate hearing from anyone who has also experienced breathlessness. Also, is anyone else taking high dose of levothyroxine and not feeling any better?

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    Hi. I know exactly how you feel. When I was first diagnosed in January of this year, I could not even talk without fighting for breath. If I had to climb stairs my poor husband had to push me up and just walking to my car made me very breathless. Fortunately, the breathlessness has almost disappeared, though on bad days it does slightly return. Recovery from this illness is very slow. One day I might feel almost normal and so shop, do some housework etc. only to spend the following day almost comatised on the settee. I am sure eventually you will start to feel well again and the weight will come off easily as you get more energy, but I did read that full recovery can take some time even up to 2 years, depending how long you have been hypo which can be difficult to pinpoint as you might have been unwell for years without realising you were underactive.

    Please be patient - you do need to experiment (with your doctor's approval) with your dose of thyroxine. I take 125mcg levothyroxine one day and 100mcg on alternate days. I am leaning towards taking 125mcg every day but like you, I am running high (very low TSH)- but then I think the blood tests need to be lowered, but thats another story. Certainly more medical research needs to be done on this illness so that sufferers, like us, can have some quality of life again. Hope it won't be too long before you start to feel better.

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  • Posted

    Hello

    Levothyroxine is not the only treatment for hypothyroidism. Do you have a complete thyroid blood panel done or only the TSH and T4? I am asking because some people have a problem converting T4 into T3. You need to ask for a thyroid blood test that includes the TSH, T4, FT3 (free T3) and FT4 (free T4) and thyroid antibodies. This will give your doctor a much clearer idea of how your body is using the thyroxine you are taking. I hope this helps.

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  • Posted

    Hi i have been on thyroxine for a year,most of the symptons have gone some only recently, carpul tunnel is still lingering and i havent lost any weight yet, even though everybody keeps saying i should have, i felt unwell for about 5 years before being diagnoised. I still get tired very easily, i feel my thyroxine needs to go up slightly and will tackly my doctor next time my bloods are due. Keep your chin up you will feel better

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  • Posted

    Hi

    I was put on Throxine a couple of months ago for an under active thyriod and am now having some breathless moments when climbling the stairs so I have slowed right down in a matter of months I feel like I am a differnt person.

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  • Posted

    Hi there,

    I started with breathlessness and extreme tiredness I couldnt even walk across the room, without struggling to breathe, to the extent that (thankfully only for a fortnight) I was sent home from work and misdiagnosed with severe asthma!

    Thankfully my GP is married to an endocrinologist, and not only did she understand something of the condition, and get the blood tests done quick to confirm it. She also managed to get me an ultrasound of my thyroid and consultation with her husband within 10 days of my first blood test (allbeit as a private patient).

    I am by no means 100% yet - only 2 months into my diagnosis and treatment, but I do feel that Im making progress, the breathlessness is much less, most of the time, and Im not quite so tired. My concentration levels are also much better than they had been. I started on 50mg of Levothyroxine, which was increased at my second consultation to 100mg - My endocrinologist expects there will be a need to increase it again, when I go back to see him next month.

    Reading the posts on this site has made me realise how lucky I am to have good medical support and a fast diagnosis. I have probably had it for about 12 months, but put it down to a busy life, full time job and 3 kids. I havent put any weight on, but am a couple of stone heavier than Id like to be.

    I also had my heart function checked with an echocardiogram and ECG - the ECG showed irregularities due to the thyroxine depletion -I cant seem to find anybody else here who has had this done, maybe something else for other sufferers who have less helpful / knowledgeable GP's to enquire about?

    Its a terrible illness and so poorly understood it seems, just wanted to share and send big hugs to all the brave and beautiful people on this site who are having to live through this!

    xx

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