Maybe we should start a Petition

For us in the UK that are Only getting Levothyroxine maybe we should get a Petition going as its Obvious to me after all the Thyroid sites, pages, forums that im on that Not getting our T3 & T4 is or has ruined the majority of us Hypothyroid sufferers lives.

I get that its expensive But if like myself u have been suffering for Years (24yrs myself) then surely we cant go without it that long.

Makes me wonder if being without for Years has produced or at least aided me having Perninous Anemia, Manic Depression, IBS, Fibromyalgia, Acid stomach, nevermind the constant up & down weight problems, thin;dry hair & skin conditions.

I spend a fortune on different alternatives at health shops/drug stores/online sites & id would rather contribute to the correct drugs instead Then at least we would get the correct information instead of our GPs diverting the conversation as they know We're Only being half treated.

What do other UK Sufferer think ???

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25 Replies

  • If you contact Lyn Mynott who started due to the treatment she received there may be things/thoughts in the pipeline.

  • I've emailed Lyn Mynott requesting help

  • Thank you !!!

  • A petition is an excellent idea but not sure who would take control of it. I know that's a defeatist attitude. I guess Lyn Mynott is the best person. I will contact her too. I've been stressed out today over this. Have wondered if we could sue the NHS for the loss of our T3, or sue Concordia the suppliers in the UK of it. But again, I wouldn't know where to start apart from contacting lawyers

  • Interesting reply

    Worth a thought

  • Not getting our T3 & T4 is or has ruined the majority of us Hypothyroid sufferers lives.

    Well here's a surprise, (((Earltr))) not the majority. Apparently 80-85% of we thyroidies get well on levo T4 alone.

    But the 'ranges' for the infallible TSH test

    are set at such a wide range that many of us slip outside and can't get diagnosed, then limbo just back into the range and can't get the larger amount of T4 we need, or can't convert T4 well or at all - we are the minority.

    Of course, you'd never know that on here because the majority the lucky thyroidies who respond to T4 monotherapy don't have to spend much of their lives glued to a monitor, on a wing and a prayer that some web page or another with bring the magic missing chord to make them well again :(

    There have been petitions. Letters to MPs. Protestations to the CMA and the BTA. If there's something in the pipeline, shaws I hope it's about to come gushing up x

  • I agree wholeheartedly and maybe we will hit a 'gusher' sooner than we think :)

    p.s. how many on levothyroxine are struggling but don't have knowledge of the internet or that they are supposed to feel well with relief of all clinical symptoms and shouldn't be prescribed other medications for the remaining symptoms. They have a life of continuing illhealth.

  • I agree with you shaws, Many Thyroid patients have not got the knowledge needed to manage their Thyroid condition correctly added to this many doctors tell you something is normal when it is not. I would be willing to start a petition about this but will talk to Lyn Mynott first xx

  • Thats why i brought this up,

    My doc makes me feek so bad everytime i say that somethings wrong & i always get the 'its part of having an Under active thyroid !!!'

  • You can tell your doctor it is only because you are not yet on an optimum of levothyroxine that you have symptoms but these could all be relieved if you were on an optimum of hormones (even T4/T3) and could he test your Free T4 and Free T3 to make sure you are converting levo (T4) to sufficient T3. Does he know that T4 is an inactive hormone? That it's job is to convert to T3, the only active thyroid and it is required in the billions of T3 receptor cells which makes our metabolism and our body work in unison. Is only taking notice of your TSH result which should be 1 or lower with both FT4 and FT3 towards the upper part of the range. I think he needs to be educated. Levothyroxine works for many but most on this forum are here because they cannot believe that whilst taking hormone replacement they stil have symptoms, or develop more.

  • Spot On totally how i feel,

    Havent a clue, spent so much on health products, tried chinese medicine who kept point to my Adrenal glades,

    Then my doc acts fed-up when i ask for help.

    Im so frustrated, Tired & Depressed with it All.

    Its messed up so much of my life, i constantly have to cancel arrangements etc.

    At the moment im on the Sick due to Fibro, Manic Depression & broken wrist.

    Otherwise id of continued plodding along without finding this Great Website.

    Thanks for reply to everybody

  • I feel totally let down by our health care system.

    The fact i also have Perninous Anemia means they spent years when i was younger passing me from 1 specialist to another.

    I even tried to find out what is my Hypothyroidism, is it Hashimoto's & my doc just said, Does it really matter, u get your Levo which has excellent results,

    Maybe we should increase yours Again 50mcg for 6ths, then see your results when u have your next blood-test,

    Total rubbish-

    Iv made an Appt to get a Cortisol check cos too much Levo sends your Adrenal glades crazy.

    My whole health has been stuck at 'Catch 22'

    Oh Thanks for the info Rapunzel

  • i think a huge number of hypothyroids just on levothyroxine do not feel well but they simply accept a lower standard of health or slavishly accept it when their doctors say its normal or theres nothing they can do

    The real target of our effeorts should be addressed to the CMG its they who should be dealing with the price gouging at Concordia on liothyronine

  • I agree, because they go complaining to the doctor, whose heart drops when he sees the person yet again, and tells them they are 'normal' and whatever bothers them isn't connect to being hypothyroid! So, in fact, the patient has chronic ill-health but doesn't know the reason.

  • Yes it's an excellent idea. I am one of those people who am on levothyroxine, it has made me feel better but there are still some areas of my health which are not good and I think to myself at 45 yrs old should I really feel like this?? I m in!

  • I know 2 people who suffer badly at the hands of docs with hyothyrpid problems . They are old school and think docs knows best.

    Few more, Ive come to know since diagnosis seek help from adding T3. to feel well .

    I may be stupid but if the healthy thyroid produces T1 ,2 ,3 and 4

    how is it ok to receive just T4.

    Im sure in time I expect 1 and 2 will be found to be needed by those without a thyroid .

    How many on this forum are in the UK.? If we had a rally/protest

    Sadly many illnesses are missed byGPs I hear it on the radio all the time about poor outcomes from late diagnosis.

    My opinion is that we here on this forum arent in the minority, just more able to seek help in this way.

    Ive met my MP , he seemed keen to help . Heard no more!

    I wrote to Mrs T May last week.

    You never know 🤣🤣🤣

  • Hello, I am relatIovely new to this forum, that is in commenting,joined 7 months ago. Life has been so sub standard in the past three years been on Levothyroxibe only for nearly nine years. Just seen an Endon privately in desperation and could not wait on NHS but thankfully she will now transfer me to her clinic at local hospital. had to do all my own research and this forum so helped. Now about to receive prescription for T3 to add to T4,only to be told that within 3 months will no longer be able to get on prescription. I would like to raise awareness for our condition and am up for a fresh petition or a March! Thank goodness you guys are here it has been so invaluable and feels like the best help when you feel that you are on your own in this,it is a disgrace that they falsify results in my opinion;it would appear the vast majority thrive with the addition of T3.

    Feeling sad that we have had to fight for our health and will continue to have to.

  • I would def sign a petition is disgusting how we are treated I've been "borderline" underactive on and off for a few years after being overactive and only just started treatment wasted years thinking I'm going crazy 😒 my daughter is the same they still won't treat her my mum has it my Aunty and my niece pretty obvious there's a link!! x

  • There is a list of litigation going through at the moment.

  • Can you give us more information on this @Glynisrose, please?

  • Not really I've just heard about it, I think there is already a petition tgats a part of it as I remember.

  • british-thyroid-association...


    I hope these two links work. Thyroid UK is advising T3 users to use the British Thyroid Association guidelines to appeal to their GP/endo. I used the Guide for GPs which IS there for public viewing, printed a copy off and sent it to my GP with a letter - begging to be kept on T3.

  • Typical its down to the cost Yet u cant put a price on your well being so upsetting

  • Went to that link Shaws & managed to sign 2 petitions, there was also listed 1 id already signed 2012

  • I am hypothyroid on Levo but still not well enough to have a normal life on oestrogen and vit D vit B, I really am frustrated as my gp is the one who prescribed levo the endo said I was in range even though all my symptoms pointed to hypothyroidism including hair loss excessive weight gain eyebrows and eyelashes fell out never grown back still have receded hair line and a lot less hair. Recent reduction in levo as thyroid became overactive now I feel ten times worse than I did. I was first prescribed levo 2013 and have never been right I was diagnosed with m.e. (c.f.s) 2004 so both this and hypothyroid have very similar symptoms some identical. I have been investigating why this has happened to me and believe there could be a link with the eostrodiol I was prescribed 2010 and then my thyroid diagnosed 2013 but was increasingly getting worse for some time prior to diagnosis the pharmacist says no, I am not convinced? I would sign any petition that is aimed towards help with any condition. My life has been totally taken from me and I can not do a thing to change it, the NHS could possibly do more but money is more important to the government than people.

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