If you have been refused T3 or had it withdrawn... - Thyroid UK
If you have been refused T3 or had it withdrawn, was your MP sympathetic when you wrote to/visited in regard to T3 prescribing?
Hi Lyn, excuse me 'butting in' with a comment (:). It's just that I'm guessing from the way your Q is worded, most who HAVEN'T contacted their MP won't even look at the poll (since that option is only visible ONCE you click thro' to the poll).I was nosy enough to view it anyway (
Just my thoughts.
Kind Regards, Sue
Hi Sue, We only want MPs who have shown themselves to be sympathetic to the problem when people have written/ visited them. If they haven't written/visited them, I'm presuming they won't know if they are sympathetic to this cause or not so they don't need to go into the poll.
Hi, my gp refused it as its only available from hospital through specialist. My specialist has started me on it recently.
Lloyd RUSSELL-MOYLE MP Brighton Kemptown LAbour
He is meeting with the CCG in April and has visited local factory in Brighton who make T3 who say they can make it for a cheaper price
Oh wow! Brilliant"! thanks! Lyn x
Your welcome, yes Mp very helpful. Still awaiting reply to complaint from local hospital endocrinology team who refused to have input into Individual Funding request application and write why T3 helps me. Apparently head of department was due to respond to me but over 6 months later I still haven’t received a response.
I will let you know outcome of MPs meeting with the CCG when I hear.
Thankyou for all your hard work for Thyroid Uk, it’s much appreciated
Hi thyroid555, Do you have more info about the factory for us? Lyn x
Hi thyroid555, Do you have more info about the factory for us? Lyn x
thyroid555 that is good news! I wrote to him but only got a holding reply. I may write again since he has obviously shown interest in the issue.
Yes it’s definite rely worth a try it’s hard fighting these things
I have to buy T3 for my Mum who lives in Brighton so I shall write to the same MP. Also the local hospital refused to give Mum her T3 when she went into hospital for 2 weeks and even threw a new box of T3 away I had left for Mum. Her T3 was 2.1 and should be over 4.1, she was comatose and got better a day after she left hospital when I gave her T3 again. Diabolical treatment and I was totally ignored and no-one rang me back and I never got to speak to a doctor all the time she was there. We have to fight for this as this will happen to our families and friends if we are not careful. I don't want to end up in a care home because of low T3!
I am so sorry to hear of this happening to your Mum and terrible the way you are treated. At lots of GPS don’t even know what T3 is and what sort of hormone it is and why it is so important.
I don’t know of Lloyd RUSSELL Moyle is your mothers Mp bit mag be worth writing to him. He said there is a factory is Bevendean/ Moulsecob who make T3 who have said they can make it for a cheaper price.
I don’t know what the factory is called, T3 used to be made by Custom Pharmaecutils in Hove but o understand that is no longer there.
My local Endo at RSCH won’t prescribe T3 neither will my Gp. My Pyschatrist is prescribing it for me and I know I am very lucky to be getting it.
My Endo wouldn’t write application or input into Individual funding request to the CCG and I feel this is totally wrong. NHS endo previously gave me T3 at the same department for 16 years until he retired and then that paper came out about stopping T3 and it was abruptly stopped.
It’s a scandal and very worrying. Where do you purchase your mother T3 from?
All good wishes to you
My NHS GP wouldn't even test FT3 let alone prescribe T3. Costs me a fortune each month to get it from a private GP.
If you have private prescription you can buy online from Germany £30 for 100 tablets 20mcg Thybon Henning or Sanofi is 25mcg and slightly cheaper
Do you know how much t3 to start with. I have an under active thyroid. My GP refused to prescribe it and gave me a Gym membership I am massively over weight and feel so tired I am almost dysfunctional.
I think there might be only a limited amount a MP can do about what is a fundamentally a medical issue but I think with the current climate they will be contacted by huge numbers of people unable to get health needs met, though Ido think te thyroid issues the very bottom interms of good health care.I have been thinking that the issue is more about the state control ofall doctors and how decsions are made about someones health not by thier own GP but by a more beurocratic doctor who decides NICE guidlines. This means we have only 3 or 4 doctors making remote decisons about all of our health. People we do not know, who do not know us are making important decsions about our lives that they will not even be aware of the consequnces of let alone accountable for. State control is a political issue. It is a nasty system that needs a big rethink.
I wrote to my MP Mrs. Julia Lopez (Hornchurch constituency, Conservative Party) about my continuing fatigue and other symptoms and inability to get an endocrinologist appointment. Ms. Lopez and her team were extremely supportive. They said they would take my case to Jeremy Hunt, and they wrote to the Havering Clinical Commissioning Group to ask them about an endocrinologist appointment. Shortly after that, I was given an endocrinologist appointment. I did not however get prescribed T3. At the time of the appointment, my T3 levels had improved slightly and reached the low end of the normal range. My T4 was on the bottom border of normal. I have deteriorated since the appointment. I think my T3 has slipped down again. My MP has been remarkably great. I think the problem though is that the NHS rules regarding T3 are far too rigid. It is obvious to me that I need a combination T4/T3 therapy, due to my chronic fatigue and very high levels of Reverse T3 - but the NHS does not take account of Reverse T3 levels. Thyroid care is not satisfactory. Life is a half-life due to chronically low energy levels which impact every aspect of life. Also, there appears to be no treatment for the autoimmunity side of thyroid disease and little attention paid to other autoimmunity antibodies present in other organs such as anti-parietal cell antibodies or Islet Cell antibodies (pancreas) in my case. It is the autoimmunity that causes the health fluctuations in my humble opinion, but the NHS do not take account of this. Nor does the NHS provide any advice about nutrition and vitamin and mineral supplementation to thyroid patients, despite the fact that most thyroid patients have chronic deficiencies, including anaemias. This is unfair. Diabetes patients receive plenty of nutritional help. So should thyroid patients.
Kind regards,
thanks!
Hi Lyn,
My MP's email address is: julia.lopez.mp@parliament.uk
Her team looked into the issues around T3 - they clearly did their homework and know all about the price hike and difficulty obtaining T3. I think this MP might be helpful to ThyroidUK.
Are you a member of ITT on Facebook? If not please have a look.
George Freeman, Mid Norfolk, Conservative
phone 020 7219 6502
email: george.freeman.mp@parliament.uk
george@georgefreeman.co.uk
Can I point out that an MP can be 'she' as well as 'he'? The question could be phrased 'he/she'. Seems a shame to have to point this out in 2018.
Seriously? We ( people with Thyroiditis and/or Hashimoto's) are fighting for our right to receive NHS treatment and medication that will enable us to manage the illness and live instead of languishing in a twilight zone.
Politically correctness is the least of my worries.
A bit rude, don't you think?
Happy Easter!
I am sorry you feel that way; I do not believe that my comment was rude, merely pointing out that some of us have different priorities.
Please, let's leave this alone now!
Mine didn't even respond
Being nosy enough to view it I was disheartened to see am in the majority. Maybe people have been kept waiting for a response or maybe historical experience has told them "useless"Am seeing my GP later today and will try and ascertain exactly where he stands. According to a private endo I saw he said labs had stopped testing T3 for NHS too .....altho my GP managed to overcome this ban, I will use writetothem.com as its a public site which focuses MP more
My MP is Mary Robinson, the Conservative MP for Cheadle in Cheshire. She sent me a letter in response to the email I sent to her to ask for help, as the Endocrinologist told me that as I do not convert T4 to T3 very well I need T3. Unfortunately the CCG has withdrawn funding for this medication, she was unable to prescribe it, but advised me to source some Henning Thybon myself. Although other brands are available without prescription, this brand and not. I advised the Endo of the brands available, and she said she was unable to recommend any of those, but advised me to speak to my GP. The GP arranged a telephone appointment with a "Prescriber" who he said could appeal my case to the CCG, if she thought appropriate. During the phone appointment, she said in her 20 odd years as a prescriber, she had never heard of anyone who was unable to convert T4 to T3, and seemed supportive of the "Levothyroxine suits all" approach. She commented that as the Endo was unable to prescribe the T3, it would have been better if she (the Endo) hasn't told me that I needed T3!!! However she said that she would put in an appeal. I have asked the Endocrinologist to add her weight to my appeal, along with the MP and (hopefully) the prescriber. I am still awaiting the outcome.
I have been told by my endo that I do not convert T4 to T3 and have been prescribed T3. My local hospital will only test T3 if asked by the endo or if you are already taking it.
I am in Scotland, it might make a difference.
Why can't your endo write you a private prescription then you could get Thybon Henning.
Thank you for your reply. I asked the Endocrinologist that same question via email, and told her that there are websites where I could obtain Henning Thybon with a private prescription, and advised her that I am willing to pay for a private prescription! I got a reply via email telling me that as I saw her as an NHS patient she is unable to provide a private prescription, and the pharmacy at Salford Royal is not able to dispense T3. I feel thwarted at every turn!
Does she see patients privately? If so then you need to "repeat the consultation " privately and then she can prescribe
If not email Dionne at Thyroid Uk for list of recommended thyroid specialist who are T3 friendly
Thanks for your help! I will wait to hear the outcome of my appeal first, but if I am not successful, I will make a private appointment. Dr Annice Mukherjee does have a private practice, but will check with Dionne from Thyroid UK first to find out if Dr Mukherjee's T3 friendly! Please could you let me know the email address for Dionne? I am a member of Thyroid UK x
My endo nhs was told to stop prescribing me t3 due to cost, i saw him as normal, blood tests as usual and he just wrote me a private prescription for it instead as he knew i can use prescription in france and its cheap over here. My t3 has now been reinstated. I think a lot of what i read is endos/gp's/mp's just making excuses to get out of it, they know the ccg's want it stopped but if you are prepared to put the ground work in and just dont accept NO it can be over turned. Tbh i didnt think we would get leicester ccg to reverse its decision as they were one of the first to blanket ban it but they have. I know groups are great but a group wont get your t3 any time soon, do it as an individual. My endo helped me find ways round and i am now getting nhs t3 again. Dont be put off, it took 3 letters from my mp to ccg, nhs england called them on my behalf, iv spoken to them twice, my endo wrote a firm letter, they just got sick of me, its not easy, its exhausting and time consuming but it can be done, dont be fobbed off.
Anyone with labour party mp, my mp is jon ashworth shadow health minister, tell them 'well jon has reversed it for a lady in leiccester and suggest they speak to him, do a letter for you mp to sign to send to jon.
Only the most persistent will get it until HUK and other interested parties can over rule the whole thing nationwide, till then your on your own xx
My GP writes me private NHS prescriptions for T3 that I send to an online German pharmacy. He says they're the kind of prescriptions you get for things you have to pay for, like travel vaccines. I don't pay my GP himself for anything.
After March 29th 2019 there is possibly a question mark as to wether EU pharmacy will continue to accept a UK (non-EU) prescription
Thanks- a couple of online German pharmacies have told me they won't accept my UK prescription after Brexit. But a pharmacist friend in Germany has told me that's premature as nothing has been decided yet. I read this on the BBC website yesterday-
'The UK is seeking "associate membership" of the European Medicines Agency, which evaluates and supervises medicines and helps national authorities authorise the sale of drugs across the EU's single market. '
Fingers crossed!!
I am trying to find out if my endo has made any contingency planning for the many patients who are supplied their T3 via Germany
I am fortunate, I still get NHS prescription
It is difficult to see what contingency planning can achieve if UK prescriptions are no longer recognised within the EU.
But I wonder if many medics prescribing Thybon Henning have even considered this
Or patients. I have - since before 2016.
Yes I agree, it was one of my main considerations on fighting to get NHS treatment.
Brexit, combined with Greek supply issue
Just underlines how outrageous it is to expect thyroid patients to self fund an essential daily medication from abroad by precarious supply chain
Dr liam fox. Tory
My doctor told me that the Labs in Swansea area will not test for T3
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4 plus vitamins
Private tests are available
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
By “doctor” do you mean GP ? I am also in Wales (Cardiff), and although it seems GPs can’t usually get FT3 tested (especially if TSH and FT4 are in range), endos most certainly can.
I’m hyper, so have TSH, FT3 and FT4 tested every six weeks. On one occasion, my local practice had lost the blood test envelope provided by my endo, so my GP said she would write a new form, but wasn’t sure whether they would test FT3. She wrote ‘on Carbimazole’ (an anti-thyroid) across the form, which seemed to do the trick
Daniel Zeichner Labour Cambridge. I wrote to him about the cost of T3 and proposals to stop prescribing and he sent a letter to the department of health, and got a reply which he forwarded to me. He was very good. I was not refused T3 as such - as I was already prescribed it - bu I was concerned about the price and the proposal to withdraw it from the NHS.
I had a meeting with my MP Ben Wallace (minister for security) about t3 and NDT and my GPs refusal to monitor me. I cannot tolerate thyroxine which gave such drastic gut problems I was worried about leaving the house. They had no solution so I have no choice but to self medicate and monitor my own bloods. The MP was sympathetic but I got the feeling he was brick-walled when he tried to do anything about it. He tackled NICE, other relevant government depts and just got the usual replies about thyroxine being the treatment of choice but no suggestions as to what us poor unfortunates do if we can’t tolerate it.
thats exactly the words my mp used 'he was being brick walled' i said thats disgraceful you are shadow health minister, man up and give em some stick! they cant just withdraw it on a whim by BTA guidelines its not acceptable pft, its my life blah blah, i was very persistent.
He now has a member of staff looking into 'who exactly agreed the price and authorised it' he is shocked little ole me, a little biddy from leicester has better negotiation skills and buying power than the entire nhs corporation!
There is always a paper trail and these agreements will be signed in triplicate somewhere and i would put money on the person having some sort of vested/conflict of interest in keeping prices high.
I wouldn’t bother with Matt Hancock as he is useless. Better to try and sort it out myself.
I didn't write to my MP because the Dr's practice and the consultant have stated that it isn't needed. Drs wouldn't acknowledge my problems are due to low T4 conversation to no one will prescribe T3. My systems are on nhs website for thyroid. My eyebrows have gone, scalp shedding, eyelashes the same and exhausted.
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and plus vitamins
Don't be fobbed off
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
@ MBK 27 I wrote to my MP, Layla Moran (Oxford West and Abingdon) and, after quite a lot of prodding, got a conscientious reply, though I have no reason to believe she followed up on it.
However, the guidelines of the Oxfordshire CCG are truly inadequate. They describe previous prescriptions to Liothyronine as 'historic' i.e. in need of updating to what they call the 'gold standard' of Levothyroxine! Weasel words to put it mildly!
As it happens, we get NDT from a reliable source but I do, very much, understand the importance of Liothyronine being available at reasonable cost, hence my full support. I can't understand how it is that, with the price-hiking scandal being flagged up by The Times, that the cash-strapped NHS is so disconnected it can't act in patients' interests and its own!
I have also been in touch with Dr Mark Porter of The Times and Radio 4's Inside Health. He says he has had such an onslaught from 'both' sides of the debate, as he calls it, that he is loath to discuss it further, despite giving air time to Dr Mark Vanderpump a few years ago. Most recently I sent him a link to Toft's 'Counterblast to current guidelines' and one or two other useful links. No response.
Good luck.
Oxfordshire CCG guidelines do actually say if prescribed by endocrinologist you can still have it. But obviously won't entertain idea of NDT
I was told by my endocrinologist that the NHS doesn't fund T3 but I could buy it privately and he wrote a private prescription for it.
Same for me Dramlouie 
The nurse at my GP practice put on form to test T3 and twice the lab didn't bother.. My GP doesn't care, I got myself diagnosed with Hashimotos and go to doctors to get bloods to monitor my labs as my GP has not once expressed and interest in monitoring me on Levothyroxine.. I had to get a free T3 done by medichecks which was at lower end of normal.. I've put so much weight on that I cannot loose and have stopped training because it is not making me feel good anymore. I was also told by my local pharmacy that they were told not to give out T3 anymore by GPs. Somehow I don't think going to an MP will make slightest bit of difference.... BELFAST
I sent an email to Aileen Campbell's Sottish Minister for Public Health and Sport on 20th of Feb hoping for clarification of her statement made in November saying that T3 would not be removed from the prescribing list as it was in England. I wanted to know if this statement applied only to existing prescriptions or it applied to new prescriptions too as I have been recommended for a trial of T3 by my endocrinologist but he can't write a prescription, my GP won't fund it and now I am waiting on decision from NHS Tayside to whether they will allow me to have it on a named patient basis. I am still waiting on a reply.
Meggietoo I am with Tayside, probably the same endo, I would look at changing gp's, I get T3 prescribed. However it its cheaper to source your own than go on a named patient basis which is basically a private script.
Im with Nhs tayside too and the clinical lead said that the withdrawal of t3 hasnt been fully implemented yet, and said I should stay on it meantime.
I was told that anyone already prescribed will still get it. Hope that's true, I'm only on my pension and I know it isn't expensive to source but it would be very difficult for me, especially as I am on 60 mcg per day.
Im in Grampian n GP and endo replied with conflicting views on prescribing , as one said it was due to cost but that it was unlicenced. Endo stated nothing to do with money but no clinical evidence and that there was high risk of heart problems and osteoarthritis if she was to prescribe it. GP had that table showing the savings to NHS to switch patients back to levo that were previously prescribed T3. She basically said her hands were tied. Then wrote on my notes that i had a mood disorder as i dared to disagree with her!! 😡
There should a question, have you been refused a T3 test?! The head of phlebotomy in Northwick Park hospital explained my results were not straightforward (although within the limits, think showed a poor conversion of T4 to T3) and said I should always have the T3 test. Here in Bournemouth my GP will not request the T3 blood test. I have asked several times.
As for an endocrinologist ... even after a few months of unbearably itch wheals which I read could be associated with hypothyroidism ... my request has been declined.
And yes, half my eyebrows are missing.
Thousands on here forced to do private testing. They won't even test FT3 if you're prescribed T3
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4 plus vitamins
Private tests are available
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
Stella Creasy, Labour MP for Waltham Forest has called and has promised to follow-up once more specific details have been provided. office@workingforwalthamstow.org.uk
For your information
Ian Liddell MP could not even be bothered to reply. I have written and emailed to him in three occasions.
Lillian Greenwood, Labour.
Email: lilian.greenwood.mp@parliament.uk
She was sympathetic, but did nothing helpful.
Hello, Thankyou for your message. There are research studies etc which are you can print out from the Thyroid UK Website on the benefits of T3. You can go armed with this information and Dr Toft's article which you can print out. Good Luck and let us know how you get on.
With Best Wishes,
Where can I find this article please? Well Done for all your help!!
Sorry I am new to this, and would appreciate any help at the moment.
Which article do you mean?
Sorry, I missed this...
Tom Brake, MP for Carshalton and Wallington understands the problem and is willing to be helpful. email: info@tombrake.co.uk
Hello
My GP allowed me to have a test for T3 but said the T4 was not good so he increased my Levothyroxine . Like others I have low energy, low pulse rate (43 beats) and aching joints to name a few charming symptoms. I need to go back but fear I will get nowhere.
I am badgering mine about Slingbthe Mesh , because been refused 3 times 3 different Endos l have been taking NDT got fed up
Hi Lynne John Woodcock MP for Barrow in Furness.was very supportive about this issue when. I first contacted him but he seems to be busy with more urgent matters at the moment. I am going to try to contact him again later this week
Asked my doc today about t3 levels as i think its causing depression was fobbed off with if you t4 levels are ok that means your t3 are
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4 plus vitamins
Private tests are available. Don't be fobbed off, get tested
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
Lynne I have spoken to Tim Farron's MP for South Lakes office several times about the issue and Tim is very supportive but Tim can't act on behalf of C.A.T.S. (Cumbria Advisory Thyroid Service ) as we are out of Tim's area Moyra Marshall C.A.T.S.
I actually still get T3 on NHS but emailed my MP regarding ridiculous cost issue and that many are having it stopped. That I had also been threatened with withdrawal due to cost.
My MP is John Howell Henley on Thames
howelljm@parliament.uk
He wrote to Lord O'Shaughnessy (only got a standard often repeated reply from him)
I hear Vince Cable is looking into this too
Also Sarah Wollaston MP for Totnes campaigned to get law to stop generic price rises
sarah.wollaston.mp@parliament.uk
I wrote to Sarah Wollaston in her capacity as Chair of the Health Select Committee. Received a standard reply; it seemed she was either unwilling or unable to make anything happen.
My GP refused to fund it. My endo claimed that "it did not work" despite her being off on maternity leave when a different endo covering her allowed me one month trial on the lowest dose and then referred me to the GP to fund it, who threw it back to the hospital, who threw it back to the GP who said it had to be secondary care that funds it so I gave up.
Jon ashworth shadow health secretary Leicester south constituency. Mine was withdrawn by ccg locally and then also at the hospital in dif ccg. Jon has been instrumental in mine being reinstated. He has doggedly persued the ccg's and asking a lot of questions of people. He is labour party, I do not consider myself labour but voted for Jon as he is also an excellent local mp.
Still waiting for a response from my MP
That MP is J Redwood (Wokingham). He seems to have a senior secretary who has picked up on the various emails I have sent him and states she “has a great deal of sympathy with my case”. Perhaps she is a fellow sufferer.
My GP refused Liothyronine saying that she hasn't heard of it but she did refer me to an Endo of my choice who I picked of the TUK list. Unfortunately when I got to the appointment at Oxford I was seen by a different one. This professor is well known to Diabetes UK so would have been more helpful to my partner. I discovered that he and the endo I wanted to see appear to have changed places. My GP will refer again but this is currently delayed due to my father's illness and death followed by an urgent hip replacement. During this time I sourced my own Liothyronine which has improved things. My GP will refer again if I give her a name but am trying to find out why my hearing has deteriorated greatly on one side at the moment so am back off to Oxford this week for their opinion.
My MP is currently high in this government and sits beside the PM so is really hard to get hold of even when the local conservatives want his support. I know him having been a councillor and town mayor but my experience is that he sits so much on the fence it must be uncomfortable. However if I do see an endo to try and get Liothyronine on the NHS and don't succeed then I will contact him.
My MP never even bothered to reply to my email. I wrote to local MSP who replied by saying i was an isolated case n so could not help. I wrote to MSP Elaine Smith whom forwarded my complaint to MSP Lewis Macdonald at Aberdeen,who is now looking into taking things up with Grampian Health board and ready for debate in Scottish Parliament again soon! Im hoping! 😕
I would have sent a weekly email to that mp saying it is now ....weeks and I have had no reply or even an outline of your plan of action. I would cc a copy of each email to parliamentary commission and your ccg to show they are ignoring letters. When you cc others into emails the mp knows it looks bad so will prob send reply it is standard ccg practice. The next email is 'why is it standard practice when I don't fit the standard profile and tests, why am I being treated on someone else's results. Then they will say it doesn't work so you reply 'It does for me as an individual' or 'how do you know as you have not done a trial on it for me' you need to close down on each point. I would deff email the person who said as an isolated case they can't help, why not? Can't be bothered or it is someone else who should, then you write to that someone else saying ....said you will help me as it's your responsibility etc but only if you think you need T3 I think of it as a game, I don't accept ' we are sorry we can't. ... I want to know why not. Palimentary hearings can take years so it really is down to individuals to fight for their health.
Bill Wiggin Hereford Officeofbillwigginmp@parliament.uk
It’s just been taken off me after being on it for 14years!
My MP (John Cryer) has yet to respond........
My MSP wrote to the scottish health minister and local health board. She was great, really shocked at the price of t3.
Roseanna Cunningham, SNP, Perth
Am just learning that medical knowledge is so limited on thyroid issues, only people living with it truly know how it is
Of course, I left that unsympathetic MP! Many, many years ago and recently in moving to a rural area, where there were more unsympathetic Dr.s (US) - I just don't go to them for any reason. I found a D.O. in Oklahoma and drive over 500 miles one way just to keep my t3/t4 combo prescription. What else is there? Here in the US it seems that the unsympathetic main stream medicine is getting more determined to either prescribe T4 only or remove the gland surgically. And then there is the "attitude", "There, there dear - you are imagining that the T3/T4 combo works better." Will the real healers please make their presence known?! Please stand up!! For the love of human dignity and all that is "first do no harm"!!
My doctor has to write suspected hyPERthyroidism on my blood tests to get the ft3 blood test. Am diagnosed with HyPOThyroidism. Crazy thats the only way the ft3 can be sort on the nhs.
I thought MP meant medical practitioner lol
My son's endocrinologist wont even put him on Thyroid replacement despite him being prescribed both T3 and T4 from a specialist when we were living overseas.......we have had to go private and at the moment buy NDT from overseas...... BUT we are not getting the help we need from a so called 'specialist consultant' !!! Arrogance beyond belief
How about getting a petition going? If you get 100,000 signatures it will be considered for discussion in Parliament. At 10,000 you will get a response from Parliament. petition.parliament.uk/help. There is is also change.org . Then of course there is always the press. As long as this issue is not in the public eye there is a good change the NHS will continue to treat sick people like idiots. They always want to give you medication for something you might get (like dishing out statins) instead of something you have!
Hi Lyn, I didn't know there was already a petition, but have just signed the ITT Change.org one now. (l'm a bit late as usual!) It says that signatures are up to 31, 283.
I gave trying to get thyroid treatment from my GP about 15 years ago. She said I just needed HRT, which didn't work and made me ill. When she finally started doing thyroid tests she kept saying I was not bad enough yet. Do they wait for you to go into a coma! Anyway have been seeing someone privately for about 15 years and was taking a combination of T4 and slow release T3 which I got from a compounding pharmacy in the USA and was fine. Then suddenly they stopped supplying. I tried other compounding pharmacies in the USA and eventually found that they can no longer supply outside of the USA. Have just been in T4 since, but not as good. Does anyone know where I can get slow release T3?
Hi tiggicat, I believe that the UK Government will only accept UK signatures for a debate. I thought you had to use the Government e-petition site for this but maybe they will accept a change.org one too. However, if Vince Cable can get a debate now, rather than wait to see if 100,000 signatures can be achieved, all the better!
Slow release T3 is available from Europe but only on prescription.
Thanks Lyn, My private doctor will give me a prescription. Can you give me details of Europe suppliers please?
My MP merely send a reply in line with official Health Board policy and did not respond to my follow up letter.
Chloe Smith - Norwich North
I contacted my GP last year via email. He has written to Jeremy Hunt on my behalf and forwarded the unhelpful reply from Lord O`Shaugnessy. He has said to contact him if he can help anymore. His name is Stephen Twigg, West Derby, Liverpool, Labour.
Edit. That should read MP!
I'm in Scotland. Endocrinologist has said yes to T3 but GP refuses to sign a prescription. Does anyone have a 'template' letter they would be willing to share to send to my MP? I'm normally pretty articulate but brain fog seems to have robbed me of putting a letter together - it's horrible!
My MP didn't even acknowledge or respond to my email!
I wouldn't know where to start with contacting my local MP about reinstating my T3 I feel so overwhelmed with how I am feeling (muzzy brain etc)
My MP was sympathetic but took no action after saying he would. Very disappointed. Clive lewis (lab)Norwich south.
Mercury liothyronine is made by Custom Pharmaceuticals in Hove, see medicines.org.uk/emc/files/... , note date February 2018. Custom Pharmaceuticals has an annual turnover of £15 duedil.com/company/gb/01431... . They make many drugs for many companies so the revenue they get from making liothyronine is just a small bit of the £15m. This gives the lie to Concordia's claim that liothyronine is expensive to manufacture. I passed this information onto the CMA a while ago but it might help if you could also raise the issue.
My MSP has responded to me and will contact health board on my behalf. My MP has not responded yet. Brexit issues probably taking up the time.
nuiq When I went to the Drs Phlebotomist to have my bloods taken I requested T3 to be tested but was told she couldn't arrange that as it was up to the lab and they only tested it if they considered it was necessary. I didn't contact my MP. Last tested 27/11/17 TSH 2.7 free T4 20.9. Given up trying to lose weight.
Wrote to her last week and she’s normally a fabulous MP , but hasn’t replied yet .
LIOTHYRONINE T3
I haven't technically been refused it yet but my wonderful GP who is sticking by me warned me that "the powers that be" would probably tell her that at some point she must stop prescribing it. She has said "let's lie low for as long as we can"! I get nervous every time I put in a repeat prescription. I phoned my MP's office in October 2017 to make an appointment as I was also aware that other women in the Lancashire Support Group were either under threat of withdrawal like myself or had already had it withdrawn. I was advised that my MP (Seema Kennedy) liked to have something in writing first. I duly put together a letter and have never even had an acknowledgement.
I did not get a reply from mp. still struggling with thyroid and gp keeps saying that nhs cant fund it.
