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Have had an underactive thyroid for 12/13 years now. at first I was put on levothyroxine 25 mg and was ok , the doctor put it up to 50mg and I started to feel quite ill at times and had dreadful panic attacks every day.

I stopped them myself because I was ill all the time. my blood tests were normal or just slightly under after that for about five years. I gave up smoking and the doctor told me I was 48 under. I had no idead what that meant but he said my thyroid had stopped functioning.

I told him I had reacted badly to thr e thyroxine so he gave me a different one on a low 25mg dose. iwas ok for a month then my throat kept swelling and I went back to doctor. This began a long succsession of trying different thyroid medications.

The GP said he would not send me to an endocrinologist as they would only prescribe thyroxine.

I use to leave my visits to the doctor and put up with all the bad symptoms. Nothing was working.

Recently I went to the doctor and he said the blood test reading was 13.5 whatever that is. I did feel bad tho and he put me on a 20mg dose of liothyronine. Was ok for a week and my throat started again and now my bladder feels irritable all the time. I started to itch badly all over and only sleep 4/5 hours a night. Cant stop the tablets cos the doc said I could go into a coma. I feel awful. What on earth can I do now?

14 Replies

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  • sounds like you are having side effects which can cause swelling of the mouth, face lips or tongue & also severe allergic reactions, such as rash, hives, itching, etc & the doc hasnt found the right dosage yet for you which can also take a few weeks to determine .

  • ....you are entitled to have copies of your blood test results. Post them here with the figures that show the range for each item then someone will be able to help you.

    There's information about this in ' see more tags ' on the right side of this page. Click and then click on the relevant letter of the alphabet. Someone cleverer than me may post the link later !

    Have you also read the main website of Thyroid UK that explains about all the different vitamins that need to be at the top end of the range in the tests.

    Do you have anti-bodies ?

    Also you will not go into a coma if you stop taking T3 - unless you have some other health issue that you have not mentioned.

    I know lots of reading and learning - but as we all know here it's a long and bumpy road to wellness. I have learnt a great deal from others on this site.

    How are you taking your T3 - are you splitting the dose ?

  • Thanks for all replies. It is now 6.30 and have been awake since 5am with this swollen throat and irritable bladder! Is the medication I am on....liothyronine.....a T3? Not sure what that is. And you asked about the dosage which is 20 mg. Could I take less than that?

    Not sure about the antibodies question. I know every one has antibodies in their bloodstream but how does this relate to the thyroid? All I know is that I feel quite terrible at times.The brain fog and confusion is awful and I struggle to talk sometimes. Can't find the words. Have had to correct this blog all the time because I make so many mistakes which is not me. I feel like running out of the house in a panic because of all this. Is anyone else like this?

  • Yes Liothyronine is T3. I believe that most people who take this whatever the dose split it and take 2 or more doses to stop your system getting it all at once. At 20 you can split tablet in half and take in morning and afternoon. You can learn a lot from reading blogs and questions on here. I. Am sure someone who takes t3 will comment on how they take their dose. But definitely agree to ask your dr practice to give you a copy of your latest blood results and post them with ranges and you can get more advice

  • I used to keep my own graphs for TSH and FT4 numbers for annual blood test results (goes back to 1998), but on a recent visit to my GP she showed me the line graphs on their computer system which they create for us and printed them off for me. Whether all GP surgeries do that or not .......? IN any case I always ask for the numbers following a test and if I think they are unusual my GP gives me a blood test form for a month or two's time and we do the test again.

  • Welcome bcdgn,

    Many of us on this site have had problems taking thyroxine (t4) and some of our members take liothyronine (t3) instead which is the active hormone and the body doesn't need to convert it as it does with the T4. You can learn a lot from reading all the info on this site. Some of us here have to take Natural desiccated Thyroid because it is our only option if we wish to regain our health. Read what you can on this site. There is always someone here who will be able to field questions. It is a long and confusing journey but the more you read and understand this illness the better equipped you will be to deal with it. Most of us here have had to become experts about our own illness. It can effect us all differently as can the medications.

    It's a fantastic site and you've come to the right place. Do get those blood results because some people here are very good at interpreting them.

    Best wishes

    Xxxx

  • Hi bcdgn. the problem with a TSH blood test is that TSH is NOT a hormone so the test does not tell anyone what is going on at cellular level. Big error here then. I can't take T4 at all as had so many ghastly side effects. Trialling T3 - well sometimes not too bad, other times bad so take myself off for a week and start again. On 1/4 25mg tablet every other day. Unfortunately it is a long road we travel to get things right. Tests to me are insufficient, inefficient and not thorough to begin with which makes things worse for us. You will have to keep battling, get as much info as you can off this site, the internet and from Thyroid UK --- they are brilliant.

  • Thanks for your comments!

  • 20mcg liothyronine may not be enough to make you feel better. In fact a dose which is too low of any thyroid gland medication can make you feel worse initially. Always get a copy of your blood test results, with ranges, and keep for your own records or to post when necessary.

    This is a link re T3 and Dr Lowe medicated his patients once per day as he says that allows the T3 (the active hormone) to saturate the cells fully thus enabling the affect to last up 3 to 5 days. Some of the links within may not work.

    web.archive.org/web/2010122...

  • I have read this as instructed . I had no idea people sufferred as much, if not more than me. All this is alot to take in and there is so much I dont know but I will make a start and go and get my blood tests printed out for me to put on here. Thank you

  • Get another blood test done to see exactly if your levels have improved. We should aim for a TSH of 1 or below. Many GP's try to keep you 'with normal range' which is not good for us.

  • This is a link and if you cursor down to the question dated November 25, 2002 re low dose of meds. Some of the links within may not work as the site is archived.

    web.archive.org/web/2010122...

  • You could be having a reaction to the fillers that are in both the thyroid medications you have been given. Thyroid medication (like most medications and suppliments) have only a tiny amount of actual thryoid hormone in them, the rest of the tablet if full of fillers and some people react to these fillers. Have a look at the leaflet that comes with your medication to see what I'm talking about.

    Ask you GP about purified T4 as it has only one filler in it. It is a lot more expensive than normal T4 but about the same price as T3 so he may perscribe it. He will be able to order it from a company called Martindales, having been finding out about this myself I think it might well be worth you asking your GP about.

    If you want a bit more info have a look at my question and the answers I got.

    thyroiduk.healthunlocked.co...

    Moggie x

  • I think once you begin to understand what is happening in your body and why, it reduces the fear somewhat . It might not make you better but at least you start to understand why you feel as you do. A really easy to understand book about Thyroid problems is the BMA Family Doctor book "Understanding Thyroid Disorders." by Dr Antony Toft. I found it helped me, I got one from AMAZON really cheaply. If your brain is in a fog as mine was it's easy to understand.

    Bless you hope you are soon feeling better.

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