There are so many of us either paying for through a back door only option or other desperate to get their hands on this drug can't we collectively do anything why should these non suffered dictate to us
Why can't groups like this approach the GMC for... - Thyroid UK
Why can't groups like this approach the GMC for Prescription NDT
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bossbird
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107 Replies
•
Absolutely agree. It is so frustrating to be the Cinderella patients, whom nobody cares about. My GP told me I was one above Diabetes in terms of interest by Endocrinologists but I think diabetic patients get better care than we do and a choice of drugs. How do we go about our mutiny then??
I have often pondered this issue as I have diabetes T1 and hypoT and have noticed the difference in care/range of drugs. Most diabetics have options for different medicines although the doctors don't really tell you the options, they just start you on a drug and see how you respond.
I think part of the issue is that diabetes/insulin dependency is a very labile state - your blood sugars are constantly changing from one 15 minute period to the next so this means:
1) patients take responsibility for diabetes on a day to day basis and have to make decisions so doctors can't afford to be so paternalistic and controlling over issues like dosage. With hypoT doctors are controlling and dictatorial over dosage/treatment as we mainly take the same dose every day.
2) doctors are more aware of the consequences of having diabetes eg. they may see you at the A&E in a terrible state so perhaps they take diabetes more seriously whereas hypoT is kind of a silent disease.
3) Diabetes is very numbers driven. I think the training of endocrinologists is so focussed on diabetes that it leads them to think like accountants. They only view endocrine disease in terms of the numbers. This approach works well with diabetes but it doesn't work so well with other disease like hypoT where the tests may not be an accurate reflection of what's going on in our tissues.
4) Also I think there may be gender discrimination on the part of endos with regards to hypoT. It's seen as a women's disease and women are treated as mentally ill/simple minded by the medical profession. Diabetes has a fairly equal distribution in terms of gender so I think this is less of an issue.
There is some history of diabetic patients' concerns over synthetic insulin being dismissed. When diabetics were switched from animal insulin to synthetic insulin, some of them had very severe hypoglycaemia but the endos refused to listen to them.
Diabetics had to fight the endocrine profession and take the issue to parliament. Maybe we could learn from them on how they managed to keep animal insulin available.
I agree that we need to take positive action to bring about change and over the last few days have been thinking how to go about it. There are various options on the web for creating petitions which could be put to the Secretary of Health etc
LouiseRoberts• in reply to
In case anyone missed it:
epetitions.direct.gov.uk/pe...
Thanks, I have signed.
I think there is a lot of activity going on, via groups like this, in the UK and abroad. The Scottish parliament petition is still going too. And the Saatchi bill also hopes to open up medicine to more non standard treatments.
I'm not what else we can do individually, but no doubt Louise will pop up with some more ideas 
Hi My take on this is there are a few hard core Endos that have hold of the royal College of Physicians. For some reason they don't think there is a problems with the treatment that is given by the NHS for thyroid patients. Unless somebody with a lot of funds can sue them for mal practice or we just have to wait for these drs to be replaced.
John C
• in reply tostockman27
And don't forget that a lot of patients don't even go to Endocrinologists, but to ENT doctors. I certainly did. I started on my road to thyroidism with a goitre (in the throat - geddit?) which, once zapped, has rendered me hypothyroid, unsurprisingly. I have never seen an Endo. As I understand it, these Endos are 'specialists' in glands - not necessarily thyroid glands. Even to have a single national clinic, staffed by people who understand the whole range of thyroid disease would be a massive boon.
stockman27• in reply to
Hi Humprey, let look at this from the nhs view. the only blood test your GP will do is a TSH . If that is ok there is not a problem and your depressed. DHEA and testosterone and full thyroid profile including RT3 and Free t3 and Free t4 are not done. So there is no problem here that way the NHS saves money and we have to pay our own medical bills by going private. its a scam.
Cheers
John C
• in reply tostockman27
Yes, I know it is a scam, John. I have just wasted 2 months telling my MP this and trying to get a message to Jane Ellison in the Department of Health (who was foolish enough to show some interest in thyroid sufferers for whom the standard treatment doesn't work). Instead I ended up with a long waffle from somebody in the department of whom I had never heard and who managed to be patronising, ill-informed and wrong at the same time. I'm sure he's been on a "write to stroppy constituents" course.
So let's NOT look at it from the NHS view, just for a change.
stockman27• in reply to
Hi Humphrey, I think the Royal society of Physicians have a big hand in this. All the private drs are very scared about getting taken off of the medical register and losing their income. I really don't know why this is. I went to see an ENDO privately and he had a heart to heart with me and said it is the RSP that dictates what and why patients are treated and its wrong. We need a law suit to stop this but its costly.
JC
stockman27• in reply to
Humphrey, just had a idea, I am sure you have heard of the pen is mightier than the sword. Why not publish this letter with the approval of the moderator and get everybody to write into this person.? Its worth a try. ??
If I can help you with a NON NHS view try me although I am going through a rough patch at the minute.
John
• in reply tostockman27
The pen is what I've got, John - being a writer!
When I wrote to Caroline Spelman, MP (another MP who showed an interest in thyroid problems) she advised me to write to Jane Ellison via my MP. Which I did. Waste of time. Mrs Spelman was clear (and so was my MP) that MPs only deal with their own constituents. Hence the rigmarole. However, Ms Ellison is also Something in the Dept of Health (what I would need to check). Does anyone know what the procedure is for approaching what may be a junior minister?
I would be very happy to dust off my letter and for everyone to customise/mail it to Jane Ellison. Although bear in mind she showed a smidgeon of support for us - we don't want to alienate her.
stockman27• in reply to
MY idea is to publish your letter from the Dept Health and then as many of us as possible and factually reply. Its no good saying that you don't feel well etc, you have to have facts.
I watched the You tube video of the two scottish ladies presenting to the Scottish parliament they were well organised and gave facts . Now before we do that we have to get Louise blessing and Lynn Mynot as they have a big picture of what is going on. I remember seeing Dr Peatfield and I am sure he said if you use the blood counts for TSH that are un use in the USA then half the women in Britain would be on replacement Thyroxin.
I do feel that a slowly slowly approach biting away at the Dept health would be a good start. My first objective would be to get NDT VAT free of import duty.
Yours John
• in reply tostockman27
It is several pages long and purports to address my points one by one. In fact, every point is smothered in cotton wool and packed away somewhere where it can't do me or him or anyone else any good. He has not one improvement to suggest vis a vis care of thyroid patients who do not do well on Levothyroxine. He sees no need to change the status quo in any way, throughout all those pages. He obviously majored in waffle. I think they believe that if they throw enough words at one, one will be intimidated/satisfied/go away. And - most importantly - he was not the one to whom I addressed my letter via my MP. I pointed this out to my MP, who has now gone strangely silent on the matter. Sigh.
I'm not, actually, sure how to post the pdf of the letter here (technically).
(I don't pay import duty on my Thyroid S NDT :o) )
stockman27• in reply to
Ahh can you respond to me off of the board on how you don't pay import duty please, my email is Johnccodling@hotmail.com
• in reply tostockman27
Doh! Didn't read your post properly. I've PMed you instead of emailing you. Hope that's OK. It's OK with TPTB on HU to share that kind of information that way (ah, acronyms - doncha just love 'em ...)
You cannot post a PDF here.
What you can do is place a copy of the PDF on any of the many "cloud" storage services and then post a public link to the PDF. I use Dropbox for this purpose and it is excellent. And free.
Alternatively, depending on the PDF itself, you can sometimes extract the text out of it and simply post that in the usual way. If you have a copy, Microsoft Word 2013 usually does a pretty good job of opening a PDF and converting it into a text document (older versions do not do this).
Rod
• in reply tohelvella
I suspected the PDF couldn't be uploaded. Thank you for the 'cloud' thought. I have had experience of Drop Box in the past. Mine wasn't as happy as yours :o). I found it to be a VERY public place. I don't think I or Mr Lamb would be happy for the level of exposure Drop Box would provide.
I will see if I can change its format. Although, it's so long it's going to be a real bore to wade through, even if I do render it postable :o(
• in reply to
Jane Ellison is the
Parliamentary Under Secretary of State for Public Health
if that helps
• in reply to
Thank you, Hypnoteq - I shall make a note of that.
• in reply to
Right, coincidentally I have just sent an email to another member of government at the behest of a petition. It seems that this coy 'going through your MP' is just a load of hooey. So I shall send my letter directly to Jane Ellison. And report back. Nobody hold their breath - I suspect you'd expire long before anything happens ...
Actually, I'm going to amend it to plead for at least one national NHS thyroidism clinic where the staff know what they're talking about and are able to access all the medications available (for the rest of the world) to treat thyroidism in its many forms.
Are we downhearted? (Don't answer that ...)
• in reply to
Just in case anyone find it useful, this is the text of the letter I sent to my MP. It was Mrs Spelman who advised me to do it this way.
"In December 2013 Mrs Caroline Spelman, Conservative MP for Meriden, raised the subject of hypothyroidism in Parliament. Here is a link to the Hansard debate, for your convenience: publications.parliament.uk/....
There is a large number of people in this country with thyroidism (not just hypothyroid) who find that the limited treatment options available to them do not help them. Many have difficulty getting diagnosed at all. I belong to an online community where such people congregate to share their woes and successes: Health Unlocked - Thyroid.
Mrs Spelman raised the subject as a result of one of HU-Thyroid's Trustees contacting her. The Parliamentary Under-Secretary of State for Health (Jane Ellison) was present. Her response to Mrs Spelman is at 11.13 on the Hansard report linked above. This was knowledgeable, as far as it went. However, that there are so many people still so unwell with thyroid problems points to some kind of failure in the current diagnosing and treatment of thyroid malfunctions (there are a number of different - sometimes very subtle - ways in which thyroids can malfunction).
I wrote to Mrs Spelman, setting out some of the more important changes the HU-Thyroid website members would like to see to the way the NHS treats thyroid patients. She advised that I write to Jane Ellison, via your goodself, with our concerns. This is that letter. Below is the list of things we would very much like to see improved.
•More research into what is causing the epidemic of thyroid disease across the world.
•Better training for Endocrinologists and GPs.
•investigation into a broader panel of treatments for thyroid malfunction. Most hypothyroid patients do well on Levothyroxine, the only drug offered by the NHS. However, a significant minority do not (I am one such).
•a regular, broad, panel of blood tests being done for thyroid patients who still exhibit symptoms, to assist in diagnosis and treatment
•Investigation into why the NHS is paying higher prices for T3 the rest of Europe.
•A ban on the practice of drug companies paying commission etc to surgeries and GPs to use their drugs.
•putting Thyroid issues on the occupational health agenda so as to help safeguard individual employees, and potential employees, ensuring that the symptoms and impairments experienced are acknowledged by NHS and employers; the current failure to do this is ethically wrong and discriminatory .
•And, perhaps most importantly, we need an acknowledgement that current diagnosis and care is inadequate for a significant minority of sufferers from thyroid disease. The thyroid affects the body in many subtle ways (too many to go into here). The experience of unwellness expresses itself differently in almost every sufferer. There are commonalities, of course. But the differences are legion. Currently only a few symptoms are acknowledged as being a legitimate part of a diagnosis.
With all good wishes,
In case anyone missed it:
epetitions.direct.gov.uk/pe...
• in reply toLouiseRoberts
Yep - missed this one too. Thanks for reposting it here. Signed and shared on FB
Then maybe we should collectively get a lawyer involved
I believe Sheila at TPA would love to do this, and believes she has enough evidence to win, but the funds needed are enormous!
Hi Harry,
you will be up against a GMC what you we need to do is target one Dr for mal practice then if we can win take it from there. Asthe GMC did with the late great Dr skinner.
Its not going to be easy , the USA are still treating the same as us so if they cannot sue what chance have we got.
Many years ago , I went to a British Thyroid meeting , there was around 200 patients there, all complaining they did not feel well. The endo kept saying for most people this treatment is right , I asked for a show of hand and almost 90% of the people put there hands up and said they did not feel well. To cut to the chase, the endo who was very tolerant and a nice guy , ended the meeting with "I have to follow RCPhyicans guide lines as he wanted to keep his job. Thats what drs are up against.
There must be a barrister or lawyer that is part of this group that can advise,
Its gonna be a slow process.
John c
unless she can google a pro bono lawyer or one that will at on a 'no win, no fee' basis
It needs to be a specialist medical lawyer. The GMC can afford the best, so you need the best to fight them.
Hi i think we should do this but via thyroid uk and lynn mynott..
There are so many of us now I have to pay for a private Prescription then get the pills from Gurney costs me 1000 pound per annum let's do a head count then it won't cost too much and surely there must be a lawyer with hashimotos?
Because the gmc protects doctors' interests, not patients. Plus nobody can take on bigpharma
helvellaAdministrator
The fundamental requirement is that a company applies for a license! Otherwise, no matter what else, it will continue to be available only on the so-called named patient basis and will not appear in, for example, BNF (British National Formulary).
As I have suggested before, European licensing might open the door to this. A company might not think any individual European country has enough demand for them to think it worth going through the hoops, but the whole of Europe might represent a more tempting target.
It is also possible that the Danish desiccated thyroid which at least recently was available in Denmark and, I think, Netherlands and Germany, could also break out of its country-confined niche if issued with a European license.
Actavis is a large company, already involved with several fingers in thyroid hormone pies including their levothyroxine in the UK, and were acquiring Forest who make Armour. (Not sure of current status of that deal.) It doesn't seem entirely fanciful that they could have an interest in this.
European licensing is still in discussion stages and does not yet exist. Who knows what form it will eventually take, if any? I hold it up as the only alternative to UK licensing that I can see on the horizon.
Rod
In the past I have tried to contact the makers of the Danish THYREOïDUM (Biofac, Kastrup, Denmark) but never got a reply.
Ironic that both this and Erfa are actually manufactured in Europe.
Rod
My daughter used to work for Penn Pharmaceuticals (its in Wales)and they test drugs and pack drugs for Forest.Maybe they would be interesting in manufacturing thyroid drugs ,or pack them here for Forest .
Rod, I am happy to be corrected on this but I was informed that NDP cannot be liciensed as its natural , that is why there is a hold on the market by the t4 makers. Again I more than happy to be proved wrong. John C
ive been told this by an endo you are correct
Ok so give up and I'm one of the lucky ones that actually can get NDT although it's hassle but for those who maybe like me can't tolerate thyroxine tough luck
Im not suggesting we give up, just mentioning what I know so far. I think the estimate of bringing any sort of case against the GMC is millions, not thousands. But of course, as Rod says, that doesn't guarantee a licence.
Hopefully we all contribute to ThyroidUK in the form of membership, and those funds may well be able to be used to further the cause.
Details of how Thyroid UK funds are spent can also be found in our Annual Report..
See link below..
L
x
Yes, and you do an amazing job on very little, so a few more members wouldn't hurt 
What we need is a friendly hypothyroid millionaire 
Indeed!
Hi All
Thyroid UK has a 3-year strategic plan place that we are working towards.
Details of the work we do and our plans for the future can be found in our Annual Report:
thyroiduk.org.uk/tuk/About_...
We quite simply do not have the funds or the manpower, at present, to step outside of this plan.
There are several petitions already running, information can be found here:
thyroiduk.org.uk/tuk/campai...
Thyroid UK continues to support the Scottish Thyroid Petition.
Our own petition of 2011/2012 ended with only just over 5000 signatures - FAR below the required 100,000 required for the English Parliament. 
L
x
Can you re do the petition for NDT and T3 I wasn't a member then and if so is there a way of letting members who have commented on these subjects know such a petition is active? We have come along way since then I didn't know the existence of T3 or NDT until around that time or later
I'm not sure what the rules are about re-petitioning....
Investigating this....
• in reply toLouiseRoberts
I only seem to find out about HU's - and other - thyroid petitions by accident (and I'm personally involved!): I wonder if there's something not quite all-encompassing enough about publicising these petitions?
LouiseRoberts• in reply to
You are probably right, but all we can do is point people to them.
They are on our website, people are welcome to link to them..
thyroiduk.org.uk/tuk/campai...
L
x
I'm ashamed to admit I hadnt seen them there
Not your fault! Most people on here don't even know we HAVE a website! *sigh*
We have tried various ideas for making it more obvious, but it doesn't really seem to help!
L
x
I certainly know you have a website, in fact I think I found the main website first. I think it's a very good one too, very professional. I must have just missed the campaigns bit!
xx
• in reply toLouiseRoberts
I had no idea you were on facebook! I've 'liked' the page, set up to follow it, and get notifications.
I don't see any way of linking to the page you've given the link to?
Hi Louise , you are doing a great job with this board. I don't think we can ever get NDP on the NHS or not in the very near future. I am a great believer in slowly slowly catch a monkey . If we can get the VAT zero rated for import that would be the first step. Then we can talk about providing the med on the NHS.
I am surprised and saddened by the last of signatures for the the petition, we perhaps can try again, . We have You tube and 38 degrees, and perhaps we can provide a campaign to get everybody interested to start the campaign. I suspect you have the ear of Lynn M and perhaps could mention it. Yours John
Investigating re-submitting the petition...
It seems to me unless something constructive is done to change the status quo we will continue moaning and getting an inadequate service from medical "professionals"
In case anyone missed it:
epetitions.direct.gov.uk/pe...
Thanks. I have posted it in all thyroid groups I am a member of on FB and on my twitter. I think we can change things one step at a time. It is worth trying! Thank you Thyroid UK for resurrecting the petition.
What can we do? A new petition for 2014? I'm pretty sure, with determination and will power, we could drum up support and hit a target of 100,000 signatures. How many people are registered to this site? I'm happy to create a petition. I would need help in writing a catchy and informative paragraph stating the cause and what we want. Thyroid issues are broad varied and complicated. But there are some very knowledgable members on here - can you help. I self medicate. It's been a rough road to sort my own health out. An understanding NHS would have helped. The first stage in self medicating was getting my head around the fact that the NHS weren't helping. Anyway who can help write this petition?
I am investigating re-submitting our petition... bear with...
The GMC were not interested in my complaint concerning 3 GPs who repeatedly misdiagnosed me.
At the summing up of the Harold Shipman enquiry, the Chairperson stated that they had behaved like a gentlemens club.
This may be of interest:
there must be a way of getting a new petition and if successful then we need to make sure all those interested get to know about it maybe there is a way of bring forums together?
No - I'm sorry, Thyroid UK has tried cross-group campaigns in the past and they tend not to go well.
I am investigating re-submitting our petition... bear with...
• in reply toLouiseRoberts
Go Louise!! And thank you.
HarryE where is the link? Can't see it.
I'd just posted it on a separate thread, but here it is as well
This is what has angered me so much over Dr S and his treatment by the GMC. I have said this before but every time Dr S was up before the GMC they couldn't really touch him due to the many testimonials received from his patients. Rationally after so many attempts then the GMC should have been thinking-this chap might not be an Endo but he has performed miracles with some and greatly helped others back to optimum health. Shouldn't we be asking about his methods and why. Shouldn't we put him as an adviser to properly controlled clinical trials, this list could go on. Instead they tried their upmost to get him struck off. That is what really angered me and if his experience couldn't sway the GMC then what can we do. I know that sounds like I'm giving up, I'm not but I can't see a way of changing anyone's minds. Our GP's are ignorant or at least seem to be coming over as that and may be they are really scared of ending up losing their livelihood. Funnily I was also thinking this morning of how you start these petitions. Publicity has to be good but it also has to be sustained. It is also costly to actually take anything through the courts. The GMC haven't responded to what has been placed before them so not the way to attack but what are the alternatives-I don't know what to suggest. I think we should get membership numbers up for a start for thyroid groups and first show the nation that we are a significant body who could actually save the NHS money if they would listen and treat in a proper responsible manner. On the treatment we do get I think we should be more prepared to yellow card drug companies whose drugs are not fit for purpose and we need other licensed drug companies to improve the quality of what little care we do get. Can't see that happening though while ever GP's won't prescribe what many of us feel we really need. Rant over but it makes me so cross!
It makes me so cross too. I knew nothing about this situation until I found TUK when I became ill at Christmas. I work for the NHS and I have to say that I am ashamed of it at the moment!
Membership will help, you're right, and I hope that every one of the 15000 members of this site who get so much help and support are also members of TUK.
Not only are many of the 15,000 here not members, many are not even aware of the main site and TUK itself.
Further, with the original TUK epetition, the number signing was lower than the number on the HU group at the time. Yes, that's right, not even every HU TUK member signed, let alone others. It was exasperating knowing that there were so many who I thought would be interested, but who for whatever reason were not interested enough.
Rod
• in reply toHarryE
I find it very confusing what site(s) are part of what. This is Health Unlocked, right? There is a sort of front page here thyroiduk.org.uk/tuk/campai..., right? There is another part of the same site that has general postings. One can have the questions and the postings sent to one's email inbox. I don't see a way of linking to that front page. Or to a campaigns page (which I would be keen to do). So when you talk about TUK, this is aka HU-T? Or not?? If TUK isn't the same thing as HU-T, then why are we doing all our business here, on the HU-T site? Pass me a wet towel someone ...
Thyroid UK is a charity with its own very useful website. Here:
This is one group within Health Unlocked a commercial organisation which sees these forums as a way to run a business.
This forum was set up by Thyroid UK and HU talking to each other and agreeing to set the forum up. Setting up and managing a reliable, decent forum is quite a job with significant costs and was beyond Thyroid UK's own resources. Thyroid UK are "in charge" and appoint admins, set guidelines, etc.
The Thyroid UK site does not have any facility for members to post. It does have various ways of contacting Thyroid UK.
Rod
• in reply tohelvella
That's very clear, Rod - thank you.
Is there any way to link to the Thyroid UK site, so one is notified of activity?
HarryE• in reply to
This is my take on it, someone will no doubt correct me! Thyroid UK is a charity, with their own website, which you have linked above. Health Unlocked is a separate entity that hosts various forums on health related subjects, of which this forum is just one. You get email notifications from Health Unlocked telling you about replies to posts etc.
As a retired teaching lawyer perhaps I can throw in my threepennorth. If anyone on this site is suffering adverse side effects from their medication and the GP is unwilling to give an alternative like NDT and I know that there are some who do and others who write private presriptionsfor it, but many will not touch it, then if a member of this site who is on benefits could seek the advice of a solicitor with a view to taking out a class action on the basis that their medication is making them ill. They may be able to persuade a good legal practitioner to take up the case on a 'no win no fee' basis. Just remember that levothyroxine is being withdrawn in July and reformulated and ask yourself why?. The more people who lobby the Royal College of Physicians regarding a bigger choice in thyroid medications and the licensing of NDT in this country, the more likely we will get our needs met.
Hope this helps
I've not heard that Levo is to be withdrawn in July! What have I missed?
Hi silverfox7, I have tried several times to PM you and my computer will not allow me to send a reply. My answer to your question is that I completed a yellow card survey for MHRA complaining about side effects of levo and I got a thank you and also a comment that they would be reviewing. But a very knowledgeable contributor on this site posted up that the MHRA would be withdrawing levo and reformulating it in July. My GP was also aware of problems with levo.
Kind regards
Thank you very much for your reply
My recent post gave some information - basically the formulation of 50 microgram Mercury Pharma Levothyroxine ONLY will be changing, very slightly, around July. After then, both MP Eltroxin and MP Levothyroxine will be absolutely 100% identical differing only in packaging.
More detail here:
healthunlocked.com/thyroidu...
Rod
Thanks very much for your detailed reply Rod. I don't know how I missed it earlier but life has been rather hectic recently at the same time my meds seem to have gone haywire! Typical!
Hi Veronica
Do you have more information about the withdrawal and reformulation please..!?!?
L
x
Hi Louise,
Would you look at my reply to silverfox7? I have been on Eltroxin for over 40 years when I was forced on to levo with no coherent reason given. After 3 lunar months on levo, I complained to my GP about the side effects. He then told me that he only ever prescribled levo and, Erfa which he would not recommend. I asked him about NDT not realising that Erfa was NDT and he said that he could not prescribe NDT. When it became known that levo was being reformulated in July he made the absurd suggestion that I should stay on this medication until July or he could refer me to an endo. For a GP to suggest that you stay on medication which is making you feel ill, to my mind, is gross negligence. Rod, on this site, put me right on Erfa and I rang to speak to my GP on Tuesday, only to be told that he was on holiday and would not be back until next Monday. The locum I spoke to said that they would not prescribe Erfa because it was not licensed in this country. I was absolutely fuming as to the attitude of these young GPs from a surgery with whom I have been registered for more than 40 years with rare visits from me. I will be looking around for another GP. I had one levo tab left last Sunday and I had taken the risky precaution of buying a very small amount of NDT off Amazon. I have written to this GP and told him that I will be lobbying Parliament for more stringent laws on the machinations of pharmaceutical companies. I have been promised a platform to address Parliament on a different issue by the Shadow Minister for Health, who despite not being our M.P. invite a group of five of us to his offices and listened to our grievances. If I get my chance on this issue. I will go back to him on the NDT issue.
My local MP, after a long delay, put the matter to the Health Minister, Jeffrey Hunt, who in turn passed it onto Earl Howe in the House of Lords. All of them were singing the same tune that levo was identical to Eltroxin, which I know is not true.
If necessary I may go down the legal route, but, unfortunately this is not an option for most people because of the cut backs in legal aid. I am a retired teaching lawyer with only a small pension, but I have successfully won leave for judicial review in the High Court and I am not easily phased by clever advocates or, indeed judges, and believe that were there is a will there is a way. But, of course, the best route is to get 100,00 signatures for Parliament to change the law and give more choice regarding medication.
Kind regards
There's an easier way - get a prescription for 25 mcg MP tablets instead, they're fine, it's the 50mcg there's a problem with.
• in reply toveronicahoward
Did you see my letter to Jane Ellison, posted in a separate 'questions' thread? Perhaps it might be useful to you in your own campaign? If you can see a way that we could do better together (with the back of these good folks), I'm game.
I have asked thyroid UK this question before, surely there are enough of us using it now to warrant a petition to get it. I have just gone without my Armour for a week because it was held up by customs and excise, and had to pay the £16.71 fee to release it. I now feel terrible so fatigued without having my medication for a over a week. Go on Bossbird please get Thyroid UK to listen to you.
I am investigating re-submitting our petition... bear with...
In case anyone missed it:
epetitions.direct.gov.uk/pe...
hi have you just set this up? I've signed and sent on x
Thanks!
As there are members on here from other parts of the world ,what about going to the European parliment .x
Hi , I am in a posting mood tonight , does anybody know if there is country that prescribes NDT normally in their medical system. I do not think there is.
I have met two endos that want the med band, because one the risk of cross contamination from the animals. 2 the consistency of the drug they tell me it varies from batch to batch,
Now if we do raise our heads and bring NDP to the forefront, we have to be careful its not banned. The GMC did this with the MMR vaccine, for measles, They refused a licence for the drug for Merrick and they stopped making it now all you can get is the MMR.. So be warned.
BTW I am on your side but playing the devils advocate here.
I would welcome a more educated view on this!!!
John C
Taking about sueing, I have very high thyroid antibodies but tsh and t4 within range so the endo said no treatment. What I would love to do is to ask him to put in writing that he will not offer me prophylactic treatment and that I will have to wait until these antibodies have damaged my thyroid to such a severity that my levels fall out of range. Then I would like to show him the evidence of prophylactic treatment and tell him to await my solicitor's letter for negligence. There must be a solicitor just waiting to take this type of hallmark case on somewhere?
Having read loads of comments on here I'm feeling a bit better about my health. I've been under the impression I had M.E. for the last 20 years. Had to leave a fabulous job in Cape Town, horse, dog, cat and friends and come back to UK to work part time. I have just had the full thyroid blood test and have been diagnosed hypothyroid, also had a mitochondrial function test throudh Dr Sarah Myhill who said I have probably been hypo for years! Now starting the fight for treatment.
Forgot to say - have signed the petition.
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Has this guy got the right approach?
