Letter received from the Health Secretary. Ironically it ended up in my junk!
Dear Ms Vaughan,
Thank you for your correspondence of 23 November to Jeremy Hunt about hypothyroidism. I have been asked to reply.
I appreciate your concerns about the availability of treatments for hypothyroidism.
The vast majority of patients, once diagnosed with hypothyroidism, can achieve successful management of their condition with a synthetic hormone replacement treatment.
Best practice on the identification and management of hypothyroidism has been provided in the Royal College of Physicians’ guidance ‘The diagnosis and management of primary hypothyroidism’. This document was developed on behalf of organisations such as the British Thyroid Association, British Thyroid Foundation and Society for Endocrinology, and is endorsed by the Royal College of General Practitioners.
The guidance states that overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism. This is usually prescribed as levothyroxine (Thyroxine) tablets. The guidance does not recommend prescribing additional T3 hormone in any presently available form. However, this does not prevent clinicians considering other forms of thyroid hormone replacement if appropriate.
Finally, whilst I note your request for a meeting with Mr Hunt, I am afraid that diary commitments mean that he is unable to meet you.
I hope this reply is helpful.
Yours sincerely,
Jane Spencer
Ministerial Correspondence and Public Enquiries
Department of Health
I look forward to your comments ...
Written by
vavthyroid
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Vavthyroid, Can't really expect politicians or GPs to ignore 'expert' guidelines. It's the BTA, BTF and Soc of Endos not acknowledging the limitations of Levothyroxine which is the real problem. Sadly, even if GPs were inclined to prescribe T3 or NDT on an individual patient basis, some are prevented from doing so by CCG bans on prescribing T3 and NDT. I think the cost of T3 and NDT compared with the low cost of Levothyroxine is a significant factor too.
Still, looking on the bright side, you don't have to shake hands with that oily little toe rag Hunt
Ellismay, I certainly got better guidance from this and other fora than from my endo. I think patient experience and common sense will often trump theory. Having overcome the hurdles of getting a diagnosis and optimal dosing, the next is to get the right medication. It defies logic to assume that Levothyroxine will work for every patient. Most chronic illnesses have a variety of medications which can be tried in order to establish the best patient response. Thyroid patients not recovering on Levothyroxine should have the same options.
I think that one of the problems could be due to so many being treated with T4 and not complaining that they have not reached optimal health. They are so used to feeling rotten that they just accept the very slight improvement once they start medication. Also there are many people who still accept the Docs word that everything is normal - in spite of feeling far from well.
When you read the various journeys here - from people who are informed - then there must be thousands in a far worse situation. It is very sad that so many people are still struggling and suffering. Maybe a leaflet drop into every surgery in the land ? - or some other places. If there could be a standard informative leaflet from say TUK - we could all download it - and distribute. If all 30,000 of us did a 100 - we could reach many
Hubby often says I need leaflets in my bag when I'm out and about ! ( Ex Marketing guy ! )
Love this idea. Lets get a standard leaflet that we can all download. I'll speak to TUK after Christmas. In the meantime, it would be good to get a list of supporters who will help distribute these leaflets. I'm not giving up. The email I received as reignited my passion to push this further. I'll start a mailing list too.
Sounds like they have NOT properly watched your presentation.
Other thing I can't understand why media is so lame these days. It is all about kardashians ( term I have given to media, that these days worries more about celebrities than would do proper job writing real articles). Would think wasting tax payers money to be bigger issue than who has got new boobs.
Why on earth Wd she think it was helpful???? Tell us done thing we don't know if she wants to be helpful rather than patronising us by towing the boring old line!
Look like that's from a civil servant. The last letter I received from Under Secretary of State George Freeman via my MP ,early last month, stated they were aware of the rise in cost of T3 ( hope so!) ,that cost had to be balanced with treatment needs and potential consequences and additional costs if supply is interrupted i.e. Reemergence of symptoms or relapse on stopping treatment. He also pointed out the danger of buying on the internet rather than your local pharmacy.
He goes on to say if a CCG denies a treatment that the patient and their doctor has requested patients must be given the reasons for that decision in writing. Patients can appeal through their clinician or complain directly to the CCG.
For my part, I think you are still receiving the old story simply a) because the politicians know no better, being "guided" by the experts and b) the "experts" haven't yet taken in what the newest work is telling them. It requires intelligence, which I'm afraid too many endocrinologists are lacking. The only way forward is twofold. First keep the papers coming out showing the proper story and its implications, covering all the aspects as closely as possible and second, apply the same condescending tone in your replies - i.e. that the original sender to you is obviously not up to speed with the latest findings or if they have read them, do not fully understand the implications. When this happy turn of events actually comes to pass, perhaps they will feel able to engage more meaningfully in the debate when possessing a better background of the facts. Do not ever lose your temper with them - that confirms their belief in your "unsoundness" and thus a rejection of all you write and say. the medical/political Establishment are all the same - cocksure of their position and defensive to the last. And when the last eventually comes, well let's somersault intellectually, "we thought that all along".
I notice she says 'the vast majority of patients once diagnosed can achieve successful management etc' (on T4 only). No mention of what happens to the minority, like me, who do not do well on T4 monotherapy. Having had many years of combined T4/T3 treatment with amazing improvement in my health they have still decided to take away my Liothyronine so I see little chance for anyone else.
I have written to the CCG and Endo without success as they just trot out the old T4 treatment is all you need etc, they completely ignore all my history and disregard the DIO2 test showing a faulty gene that inhibits T4 to T3 conversion. The main problem lies with the CCG's who will not allow Consultants or Drs to prescribe long term liothyronine even if they feel their patients would benefit (or have benefitted) from it and the Dr's and Consultants seem afraid to stand up to the CCG.
Having got fed up with banging my head against the CCG brick wall I have now given up on them all and am self treating with NDT. I actually feel quite liberated, although still very angry that I have been forced down this self funding route.
Unfortunately I don't see things changing, but well done vavthyroid for trying.
I'd like to play devil's advocate - please don't go on the attack.
I know many people who do well on T4. One is even a very successful personal trainer and one of the fittest people I know. GPs see that this works (for these people).
Levothyroxine didn't agree with me, to the extent that I considered not taking it because I still had fatigue, brain fog, tremors, etc. and with the side effects of chronic pain and headaches. I can't be the only person who experienced this. At my last endo appointment I was asked whether I would consider moving from T3 only to T4/T3 because of the concerns about heart disease and bone damage in the next 20 to 30 years. The endo in a large hospital listened (and I appreciate that not everyone is in such a fortunate situation) and understood the dilemma of being ill now or taking a chance that I might be ill in the future. He said that I'm the only patient the department has who is on T3 only. My GP, and I'm lucky to have one that I can talk to, was reluctant to provide a prescription for T3 but has seen how much better I am on it. I've always been open and honest with GPs and endos about what I'm taking and have met people taking T3 or NDT who aren't.
I fully understand how difficult it is when we feel so ill and are faced with arrogant doctors who refuse to listen but if we're not telling them what we're doing and show how much better we feel on T3 or NDT, are we not harming our own case for improved treatment?
I do agree that more needs to be done at government level too, starting with reducing the price of T3!
Don't worry, I don't attack and I hear what you are saying. I understand that many people do well on T4. I did for years and it is only recently after 17 years on Levo that I started getting symptoms such as weight gain, high blood pressure and abnormal TSH results which indicated I was still hypo. That was on 175mcg Levo.
From experience with NHS, that they seem to put hypothyroid patients into a box and there is no out-of-the-box thinking (apologies for the cliche). In other words there is one approach - Levo. If you don't like it tough. I understand what works for one person doesn't work for another, however, the NHS isn't willing to explore other evidence or options, or value our opinions.
If the people on T4 are happy with their meds then fine. However, as you know, not all of us are. Therefore, prescribing T3 or NDT to people with related symptoms upon request could save the NHS £millions. It would also give us a better quality of life.
To be completely blunt, what I'm trying to say is that the docs don't necessarily see the full extent of the problem. They see people doing well on T4. They don't tend to see the people on here asking for help, asking how long they have to be off T3/NDT before having their blood test so the docs don't find out, and where they can source T3 or NDT. The medical establishment might be able to ignore the odd person who complains that they're not doing well but if we're more open and honest about what we're all doing, eventually the penny will drop. Or the psychiatric hospitals will be full as we're all sectioned for self-medicating! By hiding what we're doing, we're not highlighting just how widespread the problem is.
Babette, My thyroidectomised friend and thyroidless sister and several other hypothyroid friends have been well on Levothyroxine for years. I had no concerns about being switched from T3 to Levothyroxine and was looking forward to taking one daily pill instead of 3. I did very badly on Levothyroxine and became 90% bedbound and only improved when I was taken off Levothyroxine for more RAI.
Endo insisted the adverse symptoms I accrued after starting Levothyroxine were not caused by Levothyroxine and ordered FBC, coeliac screen, a variety of different ECGs, chest X-ray, lung function and spirometry, all of which were clear.
Thoroughly fed up and desperate, I bought T3 and stopped Levothyroxine for 3 months. Having cleared a build up of T4 I resumed Levothyroxine and had palpitations, breathlessness and tremors within hours. I added T3 to T4 next day and symptoms calmed down. 3 months later I had a heated argument with my endo who told me there was insufficient evidence to support T4 + T3 whilst agreeing my health was considerably improved. I'm still not sure whether he prescribed me T3 because of the improvement or to stop me buying it on the internet.
Ideally patients will tell their GPs that self medicating T3 or NDT relieves their symptoms if there's to be acceptance that Levothyroxine doesn't work for everyone. Unfortunately some GPs can be very high handed and seem to prefer their patients remain symptomatic on prescribed Levothyroxine rather than well on T3 or NDT they're self funding.
I completely understand. I've had my share of docs who have no idea of how to diagnose let alone treat thyroid problems. What I can say is that for me, a ventolin inhaler had no effect at all on my Hashi's. (I wish I was joking!) My current GP (the 7th) is great, and the last 2 endos (I've seen 4) and specialist nurse have been good too. They've been approachable and listened. That's not always been the case.
During my last endo appointment I explained that the side effects of levothyroxine for me were so bad that I faced being unable to work and returning to being practically housebound. Docs see some people do well on levothyroxine. We need to explain how we feel when it doesn't work for us - the personal impact on ourselves and our families. I'm not ashamed to say that I've cried when reading some of the stories on here. It won't be easy or quick but, if we don't let the docs know these stories, even when we meet with obstruction and arrogance, how can we possibly expect things to change?
Thanks for the link. It's very reassuring and I'll take it to my next endo appointment. I took the view that I could be hit by the proverbial bus before I develop any possible complications from T3. I could be housebound now or housebound in 20 - 30 years. I want quality of life. And when I can't, there's the one way trip to Switzerland that I considered when on levothyroxine!
Babette, I felt so bad on Levothyroxine that I was planning my own exit strategy after Xmas 2013. Happily I'd recovered enough to enjoy family Christmas and haven't looked back since. My only regret is not trusting my instincts and self medicating sooner. I agree, quality of health today is more important than adverse health outcomes 20 years in the future.
It's easy to understand why everyone just needs T4. In my experience, GPs never even bother to ask for symptoms when one's feeling unwell. I have been repeatedly told by just about every GP that I've seen in the past four or five years that I am over medicated and need to reduce my T3.
It would be bad enough if they knew my symptoms but to just say reduce T3 must solely be for financial reasons and not for medical benefit.
Like a lot of other people, I can't change doctors as I live in a village and no other surgery will accept patients from here.
I think the problem is that we don't have access to policy/decision makers only GPs and endos who mostly toe the party line.
Have you ever written to your own MP abot this? If not perhaps consider asking for their view on the woefully inadequate response you got from DoH? I used to work in Whitehall and know there is nothing more likely to get attention than a letter from an MP complaining about how a constituent has received a dismissive and patronising letter from a junior in the correspondence section.
I wrote to my MP under TUK's recent campaign and received a reply last week that was so patronising - along the same lines as yours. It was as if they hadn't even read the information and facts (with references) that had been put together by TUK. Made me very angry
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I found this off another site.
My response from the DOH in response to my contacting my MP - on 1st April!! 
Dr Anthony Toft speaks out in “Thyroid Hormone Replacement - a counterblast to guidelines”
