Life Long Hypothyroidism

Hi, My name is Jayne. I was born with Congenital Hypothyroidism but my parents did not find out until I was five weeks old. I was lucky. Everything was fine until I was in my 30's My dose then was 200 mg. I led a relatively normal life, was able to gain and lose weight without problem and had two full term pregnancies, although I did have problems in the second one. Once I reached 32, I was under a new GP who decided that she knew best, she reduced my dose to 75 mg! So you can imagine how that affected me. Kept going on about how a doctor in London had prescribed thyroxine as a slimming agent and had been struck off. How it could enlarge my heart etc. What she failed to understand is that I wanted quality of life and not quantity. Since then I have had a lot of health problems. I initially developed odema in my left foot which spread to my other foot (I have to wear specialist shoes now) Other problems include miscarriage (5 times), gyne problems, I am at my heaviest ever and I also have B12 deficiency and pernicious anaemia. Two years ago I ended up in hospital with pneumonia and I found out that I also have sleep apnoea although that is getting better. They reduced my medication in hospital again and it sent me over into diabetic mode. Although I have a normal reading at the moment. I am due to see a Endocrinologist today, as my current GP is no longer is so say not "licensed" to prescribe me one of my thyroid tablets, which is Lithyronine. I know it is considered expensive, but I have been on it for over ten years and was prescribed it by another Specialist. I am now on 250 mg of thyroxine and 20 mg of the Lithyronine. I did challenge the GP and of course she denied the money side. But after reading other posts here, it has doubly confirmed by suspicions. I have also been told in the past that "I am lucky" to be given this medication. I do feel that if the original GP had listened to me, then I might not have had the problems I have now. So understandably I am really concerned about the outcome of todays appointment.

7 Replies

  • Hi Jayne, welcome to the forum.

    Good luck with the endo today! Don't forget to ask for a print-out of your blood test results - that is the first step to taking charge of your own health! :)

  • I forgot to ask for the last one but had some more tests done today. So should get the results in the forthcoming letter. Thank you for remind me though :)

  • Hi Jayne and it is irresponsible of doctors to reduce thyroid hormones due to your TSH only. I shall give you a link to an article and this doctor knew far more than doctors/endocrinologists as he himself had thyroid hormone resistance. I bet endos know nothing about that.

    Don't let the Endo reduce your T3. Tell him as you have congenital hypothyroidism you have never had the pleasure of having a healthy life like he has had. That you need liothyronine more than levothyroxine.

    The doctor who reduced your thyroid hormone may have caused you to have other problems because you were undermedicated.

  • I have been today and been told that I will be discharged as the Endo I saw does not prescribe T3 as there is "no evidence" to support that it does any good. Her words were "I don't care if you take my advice or not, I do not believe it works and I will not prescribe it, so I can discharge you and refer you back to your GP to be referred to another Consultant, but it is unlikely you will be prescribed it for much longer as it is an expensive drug and only a minority have it, the money can be spent elsewhere" BUT I have been told to reduce my liothyronine to 10mg by her which will be hard to half a 20mg small tablet and then be retested in four weeks. I might need more T4 though, this is after telling me I was on a high dose anyway and how dangerous it is. It is like going back 20 years when all my troubles started. Never had a problem for the first 32 years of my life. Ironically I did ask her, if she had a thyroid problem and she said no, so how the hell do you know how I feel. Just felt at the time, I was going back to Zombie land. I have also found out that my original consultant was sacked for Gross misconduct! I have been advised to ring the PALS department at the hospital to report it. She has also referred me for a bone density test/scan. Thank you for the link, much appreciated :)

  • I have just read the link and a lot of what was said today was in that article. I can't thank you enough. I have ammunition now. I will definitely seek a second opinion.

  • You are entitled to at least some T3, that's my personal viewpoint. She should not call herself a doctor - it's just a job she's doing - no professional with compassion could deny you T3 or reduce your dose of thyroid hormones at the same time.

    No one would wish hypothyroidism upon her but ............ if they could only experience what you've had to put up with all of your life.

    There is cheaper T3's which many of our members source. For this you'd have to put up a new post requesting a Private Message to be sent to you of details. Good info on this link:

    I advise you to write to the following MP as well as your own as another member has done. Why should you be denied a life-giving thyroid hormone.

    You can tell her you've joined the NHS Choices for information and advice of and the consultation you've had has had a bad effect on you (which is the truth). I know if someone took my T3 away, and I have a thyroid gland and was only diagnosed in my 60's I would be distraught.

  • Thank you shaws :) I will have a look at the link and get my act together. I feel better today knowing I am not on my own. There is a lot of people who understand. Previously I have felt like banging my head against a brick wall with frustration. I actually asked the Endo, if she had a thyroid problem herself and she said no, but didn't look me in the eye. I then said, so how do you know I feel? She didn't answer me.

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