GRC T3 Removal Proposal

Evening all: Bijourain ElleBee71 juniperex Kitti1 Kitten1978 humanbean dang Justiina Clutter Angel_of_the_North Rapunzel Bluecat101 j_bee SeasideSusie cinnamon_girl

Above names in no particular order -

I have sent a message to the One Show - just a very potted history - and indicating massive benefit of T3 to me.

I was thinking that if everyone did this, before tomorrow nights show, whilst they wouldn't be able to air all, they might just mention that they have had a lot of interest/response to this topic?

Please pass this onto any other contacts you have.

If you think it is worth a try please do message. I just googled The One show and found 'contact'. Easily enough done.

Please also contact the Department of Health. Their statement on the internet -

'What we do

The Department of Health (DH) helps people to live better for longer. We lead, shape and fund health and care in England, making sure people have the support, care, and treatment they need. with the compassion, respect and dignity they deserve.'

I have filled the relevant form to contact them referring to the 'help people live better for longer' and providing the 'treatment they need.'

Again, the more of us who do the more notice may be taken

I also mentioned that there is an open consultation regarding GF foods, but not one for T3. I have asked how we go about having a consultation opened for the topic of T3.

Again, please ask. A few minutes of your time might just make the difference?

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  • JGBH SilverAvocado Treepie MajorTom marigold22 Polaris Button11 Bluecat101 siddooo1

    Again, names in no specific order...continued from above post

    I hope you don't mind me bringing your attention to this post in the hope that you may be willing to make contact with The One show and the D of Health.

    Many thanks.

  • Thanks UrsaP ๐Ÿ‘ill get on to it asap ๐Ÿ˜€

  • Thanks Ursla I will do the same this forum has saved my life.

  • healthwatch.co.uk/about-us

    enquiries@healthwatch.co.uk

    Healthwatch seems to be an organisation that says it looks out for patients.

    I've just emailed them

  • marigold22 I have contacted Healthwatch in my area too...

  • It certainly will. Thanks for posting. I will include lynmynott t as she is the CEO of Thyroiduk.org.uk. and we wouldn't have this forum but for her.

  • Thanks shaws with my apologies to lynmynott and LouiseRoberts for not including them. I quickly went through posts and tried to include anyone I had contact with and don't know how I missed them. I wonder who else I missed! Hopefully others will pass on too...

  • Have emailed the show too!

  • Will email too - newbie on levo, but hey, who knows if I might need this, so very happy to support :)

  • Thank you Solstice. Who knows what their needs will be in the future. So please do - I was on T4 for 20+ years before ending up on T3 only. I doubt I knew T3 existed for 15 of those 20 years!!

  • Just sent it. Feel very strongly about this. Hope Lyn's slot gets shown.

  • I do hope so too. It should when she has made the effort to go there. Can't be that easy to do either.

  • I'd love to find out if t3 would make me feel more human, but I've suggested I might need it and basically been ignored. What have you said when contacting the Department of Health? Don't want to copy you, but want to ensure I cover similar issues. Cheers.

  • Morning Bijourain If I can remember! I did fill in the form, but have also now emailed Dame Sally Davies CMO at sally.davies@dh.gsi.gov.uk - so far so good.

    Points I covered roughly -

    I highlighted my serious concerns regarding removal of T3.

    Queried the DH statement on web - helping people 'live better for longer'. Said taking t3 away will have opposite effect.

    Many reliant on active T3 as unable to use inactive T4.

    Mentioned that most of us on T3 have already been on T4 - found it to be less or ineffective. So T4 is not a viable option for many.

    Mentioned T3 used for HypoT - potentially fatal if un/mistreated. Lack of correct treatment would lead to myriad of disabling health issues and probably premature death.

    Asked where is evidence of 'low value' and 'low benefit'?

    Evidence of benefit is ourselves - using T3 and being well/better for having it, than not. (c 55K on here alone, then other forums, Fb etc)

    Gave my history - potted - 30 years mistreatment - on t3 only for 7 years, no side effects and massive positive difference to health.

    Said I wasn't happy that T3 was being misrepresented in media by being banded with GF foods/sun cream etc - over counter, cheaper alternatives etc. There is no alternative.

    How so called 'proposal' has already become a 'ban' for some.

    How to stop t3 is to condemn many to life of increasingly disabling health issues, impacting on their ability to function, jobs and social life. Would be immoral and negligence.

    Mentioned there is an open consultation on web related to removal from prescription of GF foods - not one for T3, asked why and how we go about getting a consultation opened for this topic.

    I hope this helps?

  • That's brilliant ;))

  • Great idea UrsaP thanks for tagging me in the post!

    I'll send them an email asap ๐Ÿ˜Š

  • Worth mentioning as well that by treating the symptoms and not the cause we could well be costing the NHS more money.

  • Very true... silverfox7

    The more of us who take the time to write even a short email will help highlight the scale of this problem.

  • Very good point, especially if they can't work and are on sickness benefits.

  • I shall contact them too. Thanks for posting! I've been on T3 since 2011 when my excellent endo (who has now sadly retired) decided to try me on it because I wasn't doing at all well on T4. He changed my life! I went on to do a university degree in History and Creative Writing and managed to hold on to my business which was destined to go down the pan because I just couldn't cope with the day-to-day running of it. I will be damned if I have to give it up and it may well return me to the almost suicidal state I was in before I got it.

  • thank you

  • Can't help feeling they are going to be a bit confused about the amount of interest surrounding something they haven't aired yet! LMAO! x

    #internetpower

    :D

    x

  • But hopefully Louise, if they get a lot of contact they will see the extent of the problem?

  • It wasn't a criticism. It made me laugh at the thought of them trying to figure it out.

  • No worries LouiseRoberts it wasn't taken as a criticisms. I suspect they will have figured it out, as had someone on the T3 action group fb page, saying something about - don't bother contacting One Show as they know the extent of issue...seemed a bit of an odd response but...

    I'm just hoping that they will publicise the amount of people being affected by all this. To say nothing of the stress it is causing to a group of people for whom stress could be another trigger, to increase and accelerate their health problems!

  • Let them be confused ;))

  • UrsaP, i can't comment on t3, as I've never been offered it. My gp won't even test for it. So I can't really bring anything to the party on that issue. I agree with silverfox7, the symptoms should be treated and not ignored just because bloods show in range or normal.

  • Bijourain I was never 'offered' it, in fact I was told 10 years ago that there was nothing else but t4. I had to fight for T3. I think we all need to fight now to keep T3 as an option, as none of us know how we will be further affected by this condition. If, your treatment is not optimal, what is to say that further damage is not being done that may mean in the future you may need t3?

    I was on t4 for 20+years - never felt well on it, gradually lots of other problems arose that GP would not acknowledge as linked to thyroid. But when stopped t4 all these other symptoms disappeared. I had become T4 toxic.

    And there in lies another linked problem. GP's won't even test for T3??

    I disagree Bijpurain, I think we all can bring ourselves to the party, to fight for better treatment for us all and for those who are to follow... (for what my opinion is worth!)

  • UrsaP I've asked, produced literature from Thyroid Uk website, written an extensive letter explaining my current symptoms , none of which has even been acknowledged by my gp or surgery.I'd originally spoken to the gp to ask if she would prescribe me t3 or ndt on a named patient basis, as I'm still experiencing symptoms so asked her if I could be having trouble converting t4. Her response was to send me for tsh/ft4 test which shows I'm normal. I really don't know what else to do, to get them to even listen to me. I was told 3yrs ago by the endo that my antibodies were over a 1000, no idea if that is good or bad and no idea what they are now. My next plan of action is to pay for a full range of tests, including vitamins and see where I go from there. Is it the case that unless you get on top of the antibodies then they will eventually destroy the function of the Thyroid ? This will I presume, mean I'm put on a higher dose of t4. Once my results are back I want to try t3 or ndt myself.

  • Hi Bijourain It does sound like you need to change GP! But I'm not getting much from my current GP -(the good one retired!...very inconsiderate!) And the trouble is to change could end up jumping from frying pan into the fire! We have to fight for better treatment and understanding all around and for the option to make decisions for ourselves, knowing the risks, as to whether we try a different medication.

    We should not have to be dictated too.

    I'm afraid I'm rubbish with bloods, should understand them better by now, but... Antibodies over 1000 sounds a lot but what were the ranges? If you have a copy post it on here someone will advice you better than I.

    If you are struggling so much still then all the more reason to fight for the right of the right of the proper treatment - hey...maybe that could be a campaign slogan? 'Fighting for the right for right treatment' or just 'right for right'.... lynmynott juniperex Kitti1 .....

  • UrsaP you're right about fighting to receive the correct treatment. I haven't got my actual blood results, they were given to me at the hospital by the endo , 3yrs ago.

  • Have emailed One Show x

  • Hi have emailed the one show. Although I am on levo I feel for others who can't function without t3 and would like the choice of being able to take it if I need to. Well done to all of you that are leading the fight for this.let me know if there's anything else I can do.

  • Cheers Raventhorpe

    I've just contacted anyone I thought of or was suggested, whom may be worth doing so- MP/BMA/BTA/BBC/Journalists/CMA/Dept of Health - they should, at least, open a consultation! I've sent a message to Watchdog too... Like I say, anything that may be heard by someone somewhere. Not many responses as yet, but journalist interested and active.

    If anyone knows a good lawyer that may come in handy!!

    As you say, it is not just about us T3/T3&4 people, it affects all who may need it at some point in the future too. 30 years ago I wouldn't have known I was going to be relying on it.

  • Hi what about loose women and this morning these programmes are watched by millions of people especially women who are the ones most likely to suffer with thyroid problems maybe we should all email them as well asking for this topic to be considered if they get alot of emails they might be more inclined to listen. For Me the t3 issue is the last straw I'm fed up with being a second class citizen where my health is concerned having to pay for bloodtests and fighting to get increase in meds it shouldn't have to be like this.if you want someone to hold a placard up in downing St I'm in.

  • Great Idea...will get onto it too.... anyone else willing to respond to Raventhorpe

    Kitti1 Kitten1978 juniperex Bijourain humanbean Rapunzel dang cinnamon_girl SeasideSusie MajorTom marigold22 fingers getting tired so if anyone else can add a few names to a post to forward it on please.

  • Raventhorpe UrsaP marigold22 Zephyrbear Bijourain

    This is all so great ! I was thinking on similar lines re 'this morning' and 'loose women'. What I was wondering was if there is a celebrity we could get on board to go on to these programmes and champion our cause. At worst it would raise the profile and get more people on board. At best help us get a lot more media coverage across the board. Any one any ideas ? I've searched and searched online but can't find anyone that's opened up about it apart from the obvious Hilary C and Opera Winfrey.

    Just realised Rod Stewart has had thyroid cancer. ! And his wife's on loose women ! I'll get on to that !

    Yep let's get emailing everyone we can think of ๐Ÿ‘

    Hi all if you have any time please could you get emailing with us - the one show obvs. This morning, loose women, your mp, BMA, BTA BBC, CMA, Dept of Health, and anymore you can think of

    Hillwoman Sweetart wakemeup endomad Babette Trixie64 T3sortedme jimh111 Shelley1954 Snoddyoddbod

    More in a minute.

    UrsaP and others would it be possible for you to outline what you've put in your messages. So we sound united, so its quicker for people to formulate a letter, and four newbies like me so we don't miss any important points. Just read your comprehensive points included list, thanks ๐Ÿ‘

  • Hi please have a read of this thread and if you can spare anytime to join us emailing ๐Ÿ‘

    Treepie Marz Tiredmum75 Brieabailey Singoutloud moyramm fibrolinda nonstopmummy Liverbird1964 jgelliss

  • Kitti1 Do you want more or will that list cover it? Main point of emails I've been sending. Be careful not to all sound the same, write in own words. 'Standard' letters would not get as much notice as independent.

    This is a REAL issue, affecting 'REAL people.

    Re celebrity. Anyone got any 'Royal' connections? Isn't Prince Charles quite a advocate for 'complementary' medicines...? ? Might try writing to Buck House? Ask for his backing? Might get some publicity?

    Keep up the good work!

  • Yep you too ๐Ÿ‘ re Prince Charles anything is worth a shot. Don't know if you don't ask. That's why I'm going to have a go with Rod Stewart, and try and contact his wife Penny Lancaster through loose women. Might email louise TUK about it as it may come better from our CEO.

    Oh gosh yes, I'm putting my own story on it and not always including every point but with a couple of my own. Eg the cost of people like myself on sickness benefit on and off for years due to levo not making me well. And yep that list is great ๐Ÿ‘

  • That is great, we all have different emphasis on the same problem, so will see other points, but enough points to consolidate us....just what we need. I'd put a thumbs up back if I knew how!

  • ๐Ÿ˜‚๐Ÿ˜‚ ๐Ÿ‘ its cause I've got imojies on my tablet Cheating ๐Ÿ˜‰

  • UrsaP

    Just thought have you seen the post from Marz re t3 supplies in Greece ?

  • Yes Kitti1 I believe that is what I was reading earlier today - about the trouble getting it? Production and such?

  • Prince William and Kate and Prince Harry are all involved in advocating for mental health. It's hugely relevant to hypo as it causes depression, anxiety, even psychosis. T3 has been used for years as a treatment for treatment resistant depression (in addition to antidepressants). I've included the research studies on T3 and depression in my letter to MP.

  • Could you possibly do some links for those. I'd love to have a read / use them as evidence for my letters. Depression & anxiety are my biggest problems alongside fatigue and brain fog.

  • Kitti1 ,

    If you look at the NZ letter (I emailed you yesterday) - in Appendix A there are articles on hypothyroidism and mental health problems and on the use of T3 in psychiatry, mainly in depression.

    Appendix A โ€“ Cognitive and Emotional Impairment with Thyroid Disease, page 97

    xx

  • Depression and anxiety are very common - after all they are symptoms of low thyroid.

  • Kitti1 Also: thyroiduk.org.uk/tuk/TUK_PD...

    if you choose "find" option in your browser and put "depression" in search box lots of stuff will come up. It has been mentioned numerous times throughout the report. xx

  • One of the presenters on Loose Women has thyroid issues , Sherrie Hewson, maybe she would head up a campaign.

  • Brilliant!!!

  • I'm not in the UK unfortunately, as much as I'm in support

  • Loose Women is a good idea... will try to do that

  • Can't find how to contact Loose Women. Regarding This Morning, Dr Chris Steele is often on that programme (I think, but don't watch it). Shaws was trying to contact Dr Chris Steele

  • I've just put it on plus1 so they may hopefully mention it. Although I've read before people have trouble getting in touch with them ?

    Yep Chris Steal dies still appear on this morning occasionally

  • Have emailed this morning asking if they would consider doing a topic proposed removal of t3 from prescription. Have received an automated reply so know they have received it, hopefully they will consider it. Am working on email for loose wonen

  • Have also emailed loose women , have mentioned on this one that penny Lancaster might be interested in this cause as her husband has had thyroid cancer as kitti1 mentioned in earlier post which I thought was a brilliant idea.

  • Raventhorpe Brill can you post the contact for 'loose women' please,

  • The one I used was loose.women@itv.com

  • Cheers Raventhorpe

  • @marigold22 - Keep looking...will do the same...post on here if you find a contact line.

  • marigold22 See Raventhorpe 's reply re loose women.

  • It's a brilliant idea ;))))

  • I really do think thyroid uk. Org needs a lawyer,to represent them,we can crowd fund him /her for the charity.

  • Sweetart My husband said that weeks ago- if we all put in so much we might afford one....maybe this will be part of the campaign.

    Did you see the reply I got from the CMO of Dept of Health? Under 'CMO Reply' post (think it was posted yesterday - losing track of time) There is some hope in there, but we need to ensure that there is some representation on these 'clinical' groups during consultations.

  • I will look up and have a read so many posts to catch up on x

  • Sweetart that is the trouble trying to keep up with it all! Missing so much- seeing things months later.

    We also need to be checking with CCG's as believe there are to be consultation. We need to know when consultations are being held. One member posted finding their local one finishing yesterday? Another has said her CCG saying not holding one?

    I need to ring my local one on Tue - these should be publicised, otherwise we will miss having or say, and then they will say that there was not enough evidence of 'benefit of t3'!!! Again!!

  • some lawyers do pro bono work. We need somebody interested in human rights / discrimination on the grounds of gender (majority of us are women)

  • Kitten1978 Do you know of one???.... I think discrimination on all fronts! If you look at the recent slanted study to give them 'evidence' to take thyroid hormones off the over 65's!

  • Have now sent form to Dept of Health

  • gov.uk/government/organisat...

    For Department of Health - scroll down to near bottom of page, find..... Fill in our web contact form (please put โ€˜For the attention of the Complaints Managerโ€™ in the subject line).

  • Have contacted them too!

  • One point we must make is the increase in the hormone T3

    I believe it's been quoted at 1000%. this point must be made as the T3 tablet is not expensive and un likely to be a huge burden to NHS. At the original price of course !!

    The enormous increase in cost has to be challenged by the NHS buyer

    The profiteers in this scandal need exposing

  • I have been on t3 only for 17 years for Hypothyroidism. Started briefly on Levaxin but I was unable to convert t4 to t3 and got REALLY ill. I will email One Show!!

  • Bettan 17 years and no side effects? Please do. Thanks

  • Very good point that it affects only those taking T3. I started off on NDT then went onto Levo and still felt well until menopause then went haywire so now back on NDT! So many ladies still have that to look forward to and as yet don't know whether that will cause problems S it did with me so we all need to fight for it for now and the future!

  • Just written a really good email to The One Show thank you for your verve UrsaP and everyone else... you are all brilliant :-) Already done CMA. I will do my MP and DH next!!!

  • Thanks amasufindme the more of us who do the better chance we have....

  • Anyone hashimotos ? I've also left a message on the gluten free open consultation, as I'm ceoliac. Said I don't want free food but I want an open consultation on t3 and made points why we need to keep t3 and have a proper chat about it ๐Ÿ‘

  • Someone sent in a list of the number of T3 prescriptions through the years. If I'm correct, in 2015 there were 77,000 T3 prescriptions in England. We must also mention that they have always been classified as Life Support Drugs, ie a free prescription. Do a header like - NHS withdrawal of Life Support Drugs.

  • Except Lyn Mynott has just said on The One Show that the figure is different.

  • This is an excellent point!!!

  • Have emailed One Show.

  • I emailed the one show today as was asked.

  • Thanks Redjane Didn't get mentioned, and we know a good few have emailed but if people keep doing so the BBC may see a need for a more in depth 'serious' show.

  • Sorry - I have been completely distracted with work this week, so didn't get opportunity to contact OneShow before the report... however I have followed up with a tweet, which my CCG - City and Hackey - responded to. I have just had a detailed conversation with them on it. Its nice to see some focus on this!

    I'll post separately my CCG status...

  • No worries, I'm encouraging people to contact them following the show too - in hope they may see need for a longer more serious programme? Live in hope!

  • Let's hope so. It's been interesting to see just in the last few months, the Trust me I'm a doctor show and now the one show cover thyroid issues. Perhaps there is starting to be a groundswell?

  • ElleBee71 Let's hope so. We need to up the momentum and keep it going....

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