Scottish Thyroid Petition

Just relaxing now after a nervous morning. Dr Toft at least admitted he was wrong in the past about using only the TSH test and I really admire him for that.

I think that my quotes from people who contact us hit home because I was asked to provide them with a list at the end of the discussion.

It was very difficult to bring up all the things we wanted to bring up because you had to get the say so from the convener before you could speak and then the topic changed so it wasn't appropriate to say what you were going to say. Thyroid UK will be sending a further submission in answer to some of the comments from the BTA because we weren't given the opportunity to respond to the comments at the time.

We hope that this is the first of many round-table discussions where Thyroid UK is invited along with patients who don't do well on levothyroxine.

We have been asked to collect patient stories of those who were ill on levothyroxine and became well on the addition of T3, T3 only or NDT. Please send your stories to lyn.mynott@thyroiduk.org Don't make them too long or they won't be read. They are looking for numbers of people with these problems rather than detailed case studies. Please help us with this, particularly if you live in Scotland.

Thanks for all your support and special thanks to the three brave petitioners!

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37 Replies

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  • Very well done, Lyn. Is there a film of the discussion available to see for those of us who couldn't watch it? Jane x

  • It should be available on the Scottish Petition website for around a month as from tomorrow or Wednesday.

  • Brilliant. Thanks Lyn. Hope you can put your feet up now. x x

  • YouTube link:

  • absolutely brilliant lyn , although my lady hasn't suffered from this YET on reading the blogs of others it IS A PROBLEM THAT NEEDS TO BE ADDRESSED , and I have no illusions that it may not happen in the future, it would appear that dr toft is someone that has not ' got his head stuck in the sand ' and can re-evaluate if further important information becomes available ==== all power to him ==== good to hear that you know the 'political protocols' and you then know exactly how to use them to the optimum effect ----- I know from personal experience that without this you will just be dismissed as ' the usual intergra and dismissed ' ------take a bow [ and a couple of brownie points ] =====when are we going to get the same thing in the other parts of these sceptred isles ???? there is an awful lot of people that need this to be done ...LoL and respect alan xxx

  • Thank you so much for doing this. I am very happy with dr Tofts comment, would be happier if he would admit that NDT can be the best thing for some people.

    Roslin

  • Brilliant! Well done to all of you.

    I will be happy to provide you with an updated, and much briefer, version of my story.

    Carolyn x

  • Is there a link to the discussion please.... I watched a few seconds of it this morning, but it kept cutting out.....

    Well done to all who managed to speak.......

    G x

  • I think I signed this a while ago. I was in the latter group :) Now on T3 again I am very much better, if I ignore the sinus infection ;)

  • My email was rejected. I think your mailbox is full! I tried from a different email account and got the same message.

    Carolyn x

  • Lyn, well done! I missed the first 15 minutes but I am sure it will be available on their website??

    I have just read on the scottish thyroid petition facebook page that people writing in need to be living in Scotland??

    You deserve a glass of wine xx

  • Your efforts are really appreciated, I'm sure, by everyone on here and I can only admire your determination and committment.

    Well done Lyn and thankyou very much from all of us.

    Moggie x

  • What were some of the quotes? If that's ok to ask. And very well done. I live in Scotland and am on T3 only. I will send you my story. It's hard to write because I get emotional and anxious reliving how difficult it was but I appreciate the opportunity to share it with those that could change thyroid care and make a difference to others.

    Totoro x

  • Totoro, I completely understand, I too get emotional when trying to relay the devastation that my battle caused. Are you a Facebook member? Do look at the Scottish Thyroid Petition page. Maybe you would be able to chat to one of the ladies. I remember watching the first petition (did you see it?) and Sandra was saying how close to death she was and T3 had brought her back to life.

    facebook.com/scottishthyroi...

  • Thank you so much for your reply. Just thinking about all the issues we have with thyroid care and memories of what I've been through has made my anxiety shoot up tonight. I've just gone out bought and eaten a big bag of chocolate :-D Not good for me but comfort food helps sometimes.

    I'll have a look at the Facebook page. I've seen the video and think they are amazing. I tried to write a submission to the petition back when it started but my anxiety just went overboard. I'm really glad I have another opportunity to tell my story.

    Totoro x

  • This is what the three lady petitioners have asked for:-

    SCOTTISH THYROID SUFFERERS: MALE AND FEMALE.

    After the round-table meeting today the 1st October, it was decided that we would gather stories from Scottish Thyroid/Adrenal Patients who are unhappy with their diagnosis, treatment and medication. We would like to hear from 100 + dissatisfied patients.

    Some ideas!

    How long have you been ill?

    Have you been diagnosed?

    What was your first diagnosis?

    Have you been given any other diagnosis?

    How long did your doctor take to recognise your symptoms?

    Did she/he test your Free thyroid hormones?

    Or was it just the TSH/T4 test?

    What were the results?

    What were you prescribed?

    Were your adrenals checked?

    Were your vitamins/minerals etc checked?

    Were you referred to an endocrinologist?

    Do you still have symptoms?

    How happy were you with your overall treatment?

    Etc etc etc...

    Because it is the Scottish Parliament, it has to be Scottish Patients. Thank you for participating. You are helping to bring change.

    Please send your story (concise version please) to... Elaine.Smith.msp@scottish.parliament.uk

  • well done for fighting for all thyroid sufferers especially for those too low to fight, you all deserve a medal. I am on levothyroxine and became toxic and started self medicating on nutri thyroid and nutri adrenal as well as reducing the levothyroxine to a tolerable level, because I have to care for my mum and my disabled sister and I needed to be well to do this. (I got nowhere with my GP.) I am mentioning this as I too am feeling much better so obviously needed T3 as well as T4. So I would be happy to write a short story about my improvement but would it stand because I am self medicating? I am also a trained nurse.

    Many thanks again for all your efforts xxxxx love and prayers Helen

  • If you're in Scotland I think your story would be perfect.

    Your a nurse and you still couldn't get your GP to help you. Also I think the stories of how it's affected our lives will really get across what happens to patients lives and the effect on their families too.

    I never thought I would self medicate. You mention it to people and there is always a shocked reaction, that you're doing something way outside of normal. But if my endo leaves and I get someone else they might want to push me onto T4. I won't do it and if I need to I will self medicate.

    Totoro x

  • thanks for your reply totoro its good to know I am not alone. I am just compiling a shoter version and will submit it . keep well xx

  • Apart from Dr Toft and Dr Williams, who was the third doctor giving evidence?

  • Attendees are listed in the news item on Thyroid UK website here:

    thyroiduk.org.uk/tuk/news.h...

  • RA - people saying Mailbox full again! :(

  • Will PM you :)

  • Anyone finding mailbox full - please email me instead - louise.warvill@thyroiduk.org or submit story as a Post on here - they will still be collected.

    If you are posting on here - please head Post 'Submission' *your name* - thanks.

    L

    x

  • Louise, isn't it just stories from people in Scotland? this is what is stated on the Facebook scottish thyroid petition page?? :-)

  • I have no idea. I will be checking with Lyn today.

  • How concise does the submission have to be? It's taken me three years to get proper treatment & T3 only. It's kinda hard to condense it.

    Thanks x

  • I would write a brief timeline of events answering the suggested questions if relevant. I know it is hard but you will do it :-)

  • lyn, when would you like the patient stories to be in by?

    Ros

  • Hi Ross, We have plenty of time for the stories. I think by the end of October will be ok. Just to clarify, Scottish stories are needed for the Scottish Petition but TUK would like all your stories because we want to approach the English Parliament next. Strike while the iron is hot! :-)

  • I assume Scottish refers to people residing in Scotland? I am Scottish but reside in England.

    I improved so much when T3 was added.

  • Elaine Smith MSP's answer to enquiries from ex-pats is - "It's a devolved issue. But I'll include all responses anyway".

  • wildflower

    Thanks for the information an I will send a letter.

  • Lyn I just want to thank you and the other petitioners for having done this. I was feeling absolutely 'gutted' this week because my GP, who authorised an exemption certificate for my T3 in July (following endo advice) has suddenly 'changed his mind' and withdrawn it having spoken to those higher up. His reason - my original blood tests TSH were always 'within normal range' and therefore the NHS does not consider that I need this medication and with that he issued a private repeat prescription and a bill for £310.00 plus a £10.00 charge for him having written it!

    I've fought for 25yrs to get a diagnosis. My GP has a record of the miraculous improvement in my health and yet even now they won't believe me. I'd be happy to write a 'brief summary' of my experience, but I am in England so keep on file for when you can use it. I know we have a way to go, but really thankyou all so much. I'm in tears - got to go and compose myself!

    :)

  • Hi Zizi, This kind of thing makes me really angry! It's one of the inconsistencies I brought up at the meeting. As Lorraine saiid yesterday....we will not go away! There is injustice in the thyroid world that needs to be dealt with .... and we will deal with it! X

  • Live in Edinburgh and would love to be more involved. I am away until mid oct but will submit a story then

    Ros

  • Absolutely brilliant news Lyn. Dr Toft does warrant praise for his turn-around on TSH.

    You too deserve praise for beginning Thyroiduk which has helped so many of us.

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