I came across this pdf from the Brighton and Sussex CCG. I didn't think that such decisions could legally be made and certainly not publicised in the way that this is. Is this a typical response and how many like this missive are there in other groups? It is a monument to ignorance of the situation and dismisses airily the reality for sufferers who can only use T3.
Withdrawal of T3 from NHS-based prescribing - Thyroid UK
Withdrawal of T3 from NHS-based prescribing
diogenesRemembering
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diogenes
Remembering
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Thank you for the article and apologies I can’t she’s much light but it’s dated September 2016 for review September 2018. I wasn’t aware it was a decision made so long ago! I thought it was in the pipeline for April 2017. And would be blanketed in each city. I’m now wondering if Brighton and Sussex was the earliest City/ county for this.
My understanding from the experience of patients in the forum is that T3 was being withdrawn by many CCGs long before this recent debate. Several members were involved in lengthy appeals. The recent change was an attempt to strengthen even more the blacklisting of T3.
Really shocking document! A few things I find the most amazing in it:
- They acknowledge that a number of people need T3 and cannot manage on Levo alone.
- Mentions several times that T3 can be acquired privately, including a strong suggestion at the end that patients who need it should go private.
- Mentions NDT. Strange as most doctors haven't even heard of it! Then very sensational language used to describe it.
- Describes what T4 and T3 are in language very similar to this forum, except for making the extraordinary claim that all tissues that need it can convert T4 into T3.
Really scary and very sad leaflet. It has a very hostile tone, and its completely shutting down the medicine with no real explanation for why. If anything it undermines it's own argument by saying that T3 is necessary for some patients and strongly pushing them towards the private sector.
in reply to SilverAvocado
I cant bear to read it but if they acknowleding the need for T3 this document in its self might be helpful to someone appealing to that CCG for T3.
I thought however the recent guidline decsion was that T3 should be available if prescribed by consultant.
SilverAvocado in reply to
This leaflet is from about a year prior to that decision. That discussion was the most recent in loads of moves to cut off T3.
I had a brief discussion with my Endo where she suggested she can no longer prescribe T3. I had had a scare of my cancer returning, so I wasn't concentrating enough to pin her down and see if that's what she meant. But she has been very okay with T3 in the past.
in reply to SilverAvocado
Are you Ok?
I wonder why she felt she could no longer prescribe T3.
SilverAvocado in reply to
I self medicate with NDT, so I now don't take anything she prescribes.
I gather that its her interpretation of the recent NHS decision. But I wish I'd asked if those are the instructions she's getting.
Previously she's had no problem with T3, and was prescribing it a lot as part of cancer forearm my.
in reply to SilverAvocado
A lot goes missing in translation when you hear stuff working in NHS. It is run on rumour and here say. I think the decision was here somewhere. Perhaps if you have time you could take her a copie to next appointment. I dont think we have any endos in Bristol who prescribe T3.
Brighton and Hove CCG's Prescribing Committee are meeting on 23rd January to discuss their position following the NHS England consultation. Any bets as to what the decision will be?
Swale CCG in Kent have apparently set up a new Thyroid Care project. They are offering DIO2 gene test and recognise that gut biome can be badly affected. As result will be prescribing T3 to affected patients
See Improve Thyroid Treatment group on Facebook for more info.
Perhaps someone can send relevant info from Kent CCG to Brighton before this meeting
I agree with everything SilverAvocado says: shocking and ignorant.
Might be worth sending that to the BTA
Really shocking. I hope we have a member living in this CCG area who feels able to challenge the statements.
Their statement isn't even factually correct!!!! It's time someone took the NHS to court. Can we do it as a group?
I've been thinking about this. Probably judicial review is the most appropriate course. TUK would need to find a barrister willing to work pro bono and there would need to be crowdfunding for the court process.
I contacted a no win no fee lawyer in Glasgow yesterday who specialises in personal injury etc to ask if they would consider my 16 year old daughter's case (GP refuses to prescribe T3 prescribed by private Endo and NHS endo refused to see her despite her having numerous long standing symptoms of hypothyroidism whilst on Levo). They said it may be considered a case for medical negligence. Next step is to fill forms. I'm thinking it might be worth a try especially as it stated they have a passion for justice!!
These CCG's need their wings clipped as they've forgotton who they're serving.
helvellaAdministratorThyroid UK
reallyfedup123,
diogenes, the original poster of this thread, is Dr John Midgley B.Sc (Leeds) D Phil (Oxford)
You can see his picture here:
thyroiduk.org.uk/tuk/About_...
He devised FT4 and FT3 tests - not TSH.
Lyn Mynott has posted this:
healthunlocked.com/thyroidu...
Links to that paper - and several more by the same team - have already been posted here many times.
The paper is also highlighted on the Thyroid UK website:
I think that would be a good idea too. The link to the TUK website is not that obvious for newcomers to the forum.
It's a disgraceful statement. I have seen it before. My CCG is next door - High Weald Lewes Havens. Their 'Medical Opitmization Team' would appear to have started picking current recipients of T3 off one by one. Monitoring....
In terms of prescribing practice, these two CCG's are effectively one 
Then the fight will be interesting! And at least I’m up for it these days.
A while ago the idea of moving to the Brighton area appealed to me, until I found this document. I used it in my reply to the NHS England consultation as an example of NHS discrimination against patients who haven’t the money to pay privately for treatment that’s acknowledged, even by the endo cretins of Brighton, to be of benefit. So depressing.
Well, that's the biggest load of 🐂💩 I've read for a long time! I suggest you print out the FAQs for Endocrinologists and GPs from the BTA site and take them along to your next appointments!
I think there is a lot wrong with the format of HealthUnlocked It would be great to have a proper forum/bulletin board structure, where there was a page that showed all the threads in the order they've been commented on. Then popular threads would remain on the page for days or weeks if they were useful - for example there could be one thread about T3 news or campaigning. And then several stickied threads at the top with things like resources or forum rules.
What we've got is more like a blog structure. Every post anyone makes is treated with equal weight, and slips down the list until in a few days it's gone!
Get ill, or go private? Hmmm...
I wonder why only Armour is mentioned, & how this reflects on the general ignorance of endocrinologists!
My Endo has only heard of Armour. It seems to be the shorthand for all NDT. Maybe has the best marketing 
T3 doesn't cross the placenta? What's that all about? May be it goes by carrier pigeon.
silverfox7,
At least one paper suggests the possibility of something VERY different:
It is conceivable that the considerable differences between maternal and fetal serum T4 concentrations in healthy animals are explained by the T4 impermeability of the placenta.
Yes can appreciate a variation but suggesting T3 didn't cross when the foetus is at maximum growth level didn't add up!
There is a new section called 'Discover' - we are not yet sure what information we will be able to add to this.
Why not have a section that collects research paper headings, divided into different topics like thyroid-diagnosis, thyroid-treatment, and similarly for papers linking to PA, gut problems etc etc.
Unfortunately, we don't get a choice - we will get what we are given!
We will have something which looks like that on OUR new website though. 
x
It will include all the research that we have - eventually!
A clearly defined resource section sounds like an excellent idea...but how readily might that be achieved here?
I for one have trawled thro' many posts seeking info only to find the same replies repeated many times over which must be time consuming for those offering advice. I ended up doing Copy and Paste into a doc casually titled, "Thyroid Stuff", after I found what I was looking for....otherwise that info was either lost to me or took ages to find again. This method works for me. It just involves a bit more effort and self help, but, it means I have an easily accessed resource doc. tailored to my needs.
I fear this forum, as it exists, may end up being the victim of it's own success due to the ever increasing number of ill thyroid patients who are struggling to get adequate/proper advice and help elsewhere.
This should be the responsibility of the highly paid NHS bosses...unfortunately they so often slide out of this one; the overworked doctors and nurses then get the blame and the onus then falls on charities like this one to pick up the pieces.
The pressure on admin here must be immense...help them to help us by encouraging people to check previous posts in search of answers before posting questions already asked and answered a dozen times over!
Sorry...I'm ranting but I think we need to be prepared to do some of the "leg work" ourselves!
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