Living long term with Thyroid disorder

I thought I would tell my story to try and help those who are feeling distressed with their diagnosis.

I was born in 1974 and was lucky that my doctor was on holiday and a doctor was covering from Guys and St Thomas hospital. He was a specialist in Thyroid disorders and I was diagnosed almost straight away, it was thought that the shock of being born made my thyroid stop working. I was put on thyroxine pretty much from birth. Having to travel as an out patient to Guys on a 6 monthly appointment up until I was 16 when I had to be discharged. At that time I was told I would be on 150mg per day. ( taken altogether in the morning) well since then I have been to many doctors most of which did not ever understand the condition. When my blood tests came back low the doctor wouldn't look into it they would just increase my dose. I do have very dry skin,am tired a lot,have carpal tunnel,IBS,depression and various other issues associated with an under active thyroid. When I left London I was on 500mg which is classed as a lethal dose and I was constantly questioned by pharmacists about it.

Thankfully a miracle happened to me, I moved to Norfolk and registered with a new practice, this practice and my new Doctor was so shocked with my levels of thyroxine they straight away ordered blood tests and worked with the local clinical chemist to sort out my levels. Don't get me wrong this wasn't an easy fix and took a little time. But eventually it was established that my body doesn't convert T4 into T3. I was then put on T3 ( liothyronine) and the dose was adjusted as needed until it has stablised. That was 6 years ago that I was put on my current dose. I have lost a bit of weight, my skin is still dry but I am passed worrying about that. My brain sometimes has a few silly moments but I actually have an excellent memory and have a large number of qualifications. I do have a degree in biomedical science so do have some background and can talk about my condition. But with the Internet now you can find out a lot of information.

I wanted to show people that it can get better, it took 30 years for me but the condition wasn't and isn't very well understood and it just takes perserverence and a good team of doctors to get you to the right place.

15 Replies

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  • It is such a pity that modern day doctors seem completely unaware of clinical symptoms and keep many undermedicated, thus they have continuing symptoms.

    I am glad you have at last found a doctor who has enabled you to get better.

    Best wishes

  • My doctors is a teaching practice for the Norfolk & Norwich hospital trust and I speak to students on a yearly basis to explain to them about my condition. It is quite scary how these students are so in the dark about the condition and are going on to be GPs.

  • welliec, first of all well done. At 500mg did you experience T4 toxcity, wired and tired, flaky and shaky? What dose of T3 has worked for you? Have you looked at your other hormone levels as well as the usual suspects, A, B's including B12, C, D, ferritin and so forth? Many of us find that after many years of being undertreated, if treated at all, that our other hormone levels are out of balance. Have you experienced this? I'm quite interested in the fact that you are talking to med students, any shrinks? What are you covering in the talk you give to them? Are you introducing them to the wide range of how thyroid problems present and the common problems patients face with doctors? How are your talks accepted by the medical staff doctors? So many questions, so little space. PR

  • At 500mg i didn't experience anything as my body couldn't synthesize it so i just felt under all the time. I had to take a year off Uni as my doctor there didn't tell me my levels were low so i was constantly tired and unable to get any momentum going. I have had countless blood tests and all my levels checked. I have been treated for the last 38 years and i was mostly okay until i reached adulthood that's when things went a bit funny. I have a counsellor for other stuff but not spoken to any re the thyroid issue. The med students i essentially give them the same info as i gave in this blog although a bit more about the symptoms i suffer so that they can help others. i have seen that they were very unaware of the condition and what effects it has. My medical practice is keen for us to talk to students and they have a variety of thyroid sufferers both under and over active to talk to them every year. I am very lucky that i have a fantastic practice, so much so i drive 10 miles to get there as i don't want to change. if you have any more questions i am happy to answer them and help.

    kell

  • Wow - thank you for such an encouraging blog, I love to see folks feeling better with correct treatment! Jane :D

  • Thanks after reading so many people feeling bad I wanted to show it can get better.

  • Thanks again,

    just a little thought I try to share with folks, my carpal/cubital tunnel's gone with Vit D - but you probably know the connection already, maybe T3 eases it too, I don't know. J x

  • Thank you Welliec!!! You are my blessing. I needed to hear story of somebody with hypothyroidism who conquered the symptoms specifically memory problems that are most dreadful for me and then did a degree in bio-medical science.

    I am very depressed, I have tried to end my life because of the diagnosis and the fear that my memory problems will stay with me forever and that I will never be able to finish my second degree and study even further.

    I will remember your story and I will try to keep my hopes based on what you have achieved.

    If I only could I would move to Norfolk where you live just to registered with your helpful and open - minded GP.

    Best wishes

    E xx

  • Hi E

    Please don't feel bad it will get better, it can take time but it happens. Just make sure you continue a frank dialogue with your GP, keep a diary if you need to to keep a track of your symptoms that way you will have proof to show your doctor. But you can message me if you wish if you are feeling bad as I support others who have depression and thyroid issues.

    Take care.

    Kellie

  • Thank You Kellie

    My GP is not good so I do not have a chance with any of them in my surgery. Unfortunately I do not get any medical help. I am dealing with this on my own and with the help of this forum. I have been prescribed NDT Erfa by one of private doctors but that's all really.

    Take care

    E

  • Hi Welliec. Thank you for posting your blog, I'm sure many will find your story encouraging. We have a section on the main Thyroid UK website for 'case studies'. (Thyroid UK is the charity that runs this support group)

    Perhaps you would like to have a look around and consider contributing your own story. Posts here on this support site are very fast moving and tend to disappear from sight rather quickly. Whereas the main website is static and your story will always be easily accessed by all who visit the site.

    thyroiduk.org.uk/tuk/get_in...

  • Thanks i have posted my story on the main site as well.

  • Hi there, would you be able to give me the name of the doctor and practice you went to? I live in Norfolk and am searching for a GP that understands my health issues. So far I've been unsuccessful.

  • Hi Wellies, I'd also like to know if you could give the name of the specialist you saw, not having much luck with mine or my Doctor at the mo, also in Norfolk!

  • Hi Welliec I realise this post is now 3 years old but wondered whether your Norfolk doctor is still practising and whether you may be able to message me the name of the doctor. I live in Bedfordshire but having no luck with GPs in my surgery, all the usual stories. I have begun to think that as I'm now 61 they perhaps don't think its important that I improve my health and whenever you mention the 'i' word (internet lol) they of course roll their eyes in horror, but don't give you any credit for your own intelligence or for doing research to try and improve your health. I've been diagnosed over 9 years hypothyroid, 4 stone overweight, all the other usual symptoms. Recently tried a 25mcg increase in Levo but reacted very badly to it. Have had private blood tests over the last few months which GP doesn't want to know about and now thinking of going down the alternative route of possible NDT or T3. Have lots of support from this forum and another elsewhere, but it would be so much more of a confidence boost to actually have a doctor on board to support as well. Hope you are still well.

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