Desperately seeking reassurance

Hi everyone. I'm new to this site. Can anyone please help me. I've had underactive thyroid for 25 years and been quite stable until recently. Started to feel unwell at Christmas. Tests showed I was over active (32). Thyroxine was dropped from 150 to 100 a day. Six weeks later tests showed 28. Dosage was dropped to 50 a day. Nearly 8 weeks later (i have another bloid test next week) and i still feel dreadful. Basically i just feel i will never feel well again. Everyday is a struggle! I am extremely anxious and tired all the time. I have very low mood (weepy and agitated), muscle aches and slurry speach. Every task is an effort (how I am managing to go to work I don't know!). I actually feel like I am going mad. Can anyone relate to what I am saying or am I actually going mad? Would appreciate any feedback. Thanks so much.

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8 Replies

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  • Can you post your last thyroid results, with ranges- the figures in brackets (important as labs around the country vary) for members to comment on?

  • Hi thanks for replying. No sorry I don't. The doctor just said the reading should be 19 or below and my reading was 32 and then it had gone down to only 28. I could get the ranges when I go next week if that helps?

  • Do you have recent tests for vitamin D, folate, ferritin & B12.

    Common for these to be too low & then you can't use thyroid hormones- they just sit in blood. Then GP cuts dose (making you feel worse)

    Do you know if you have Hashimotos? High Thyroid antibodies

    Ask GP to test all these if they have not been done

    Or if you can't face that, you can get private tests - see Thyroid Uk website. Most popular blood test is the thyroid & vitamin bundle -£99 through Medichecks or Blue Horizon. (Often have money off offers)

    Always do any thyroid blood test as early in day as possible, fasting & don't take Levo in 24 hours prior (take straight after)

  • Thanks for the advice. I will ask about those tests next week.

  • I've also been under active 25 year after previously been overactive 10 year. I was first prescribed 150 and it didn't make a lot of difference. I was still lethargic and feeling the cold and couldn't lose weight. After much nagging it was raised to 175 and the difference it made.I felt alive after a week and was rather angry that I could have felt so much better for the last 2 years. I know they have to raise medication and reduce slowly and medically you are better being under active but although I will never be size 8/10 again a size 14 makes me happier person although I battle to stay at this size.

  • I originally had an overactive thyroid 25 years ago and had the radio active iodine treatment which made it go permanently underactive. Am I right in thinking this is what they refer to as Graves Disease? You would think I know after all these years!

  • It's a complicated disease isn't it.... I was threatened with radioactive iodine and having it removed.... the reason why was that when I was overactive and on carbimazole I didn't take it as I should have because it slowed me down.put weight on and my hair came out. I didn't realise at 29 that they would regulate the medication and get me stable eventually.... I was silly and should have done as hospital said.My Mum was a nurse and books were accessible and I read them all wrong as you do... I think you will be on thyroxine won't you and should have blood tests periodically.. Ask your doctor that's best.

  • Yes it is complicated. Even after all these years I keep reading things I've never even heard of before. I think I have lots of questions the next time I visit my doctor! Thanks

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