Oh... here were go 👿 T3 fiasco continues. Edit... - Thyroid UK

Thyroid UK

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Oh... here were go 👿 T3 fiasco continues. Edit...sorted 🥳

TiggerMe profile image
138 Replies

So much for seeing the NHS Endo and becoming all legit.... now need to go and lead the GP to the letter they have had for a month so that they can take over the prescription..... 🤬

Same saga after the Meno Clinic, they act all dumb and then all of a sudden realize, oh yes we can do that 😐

Haven't asked them to dispense just provide the script, as this would be too much of a learning curve for them all in one go 🙄

Edit: I have now been told my prescription had been send to my rather brilliant independent Pharmacist! Who has it ready in a basket for me 🥳 also added to my repeat meds

Quite a result as the group that the Surgery is now part of has not prescribed in the past!! Education for them 😏

Thanks for all your help and insight everyone👏🤗 ... no doubt it won't last but here's to progressing the cause

Loads of really useful responses within this post... read on and be empowered 🤗🤗

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138 Replies
Jazzw profile image
Jazzw

Arrrggghhh!

tattybogle profile image
tattybogle

i'm confused Eyesore.

the route to getting GP's to prescribe T3 on NHS goes :

NHS endo does trial.. and prescribes (and hospital pays for) T3.... until end of trial :

THEN endo writes to GP to request they take over prescribing on Shared Care Agreement .

if this accepted 'trial of t3 by Endo' route is not followed , then GP's aren't allowed to prescribe T3 ,

So i thought the endo should be issuing the prescription at this point , not the GP ?

There is a clause in most CCG / ICB area's Liothyronine prescribing guidelines saying that privately sourced T3 does not count as a trial, and GP's should not take this prescription over. The only route is after 'trial by endo' THEN GP agreeing to take over prescribing via shared care agreement .

Have i misunderstood .. you got referral to NHS endo , then he just said what dose to take and wrote to GP to ask them to prescribe on shared care agreement straight away ?

Surely ENDO needs to be prescribing it for now while you are 'on trial' ?

what a bloody fart about this all is ,... they weren't joking when they decided to call it "a trial".. you could probably get yourself aquitted from an armed robbery charge with less effort than it takes to get some 'legal' T3 sorted .

Jazzw profile image
Jazzw in reply to tattybogle

It’s been a few years ago now but when my OH finally got T3 on the NHS via the endo, it was still the GP who had to write the prescription.

Barking mad.

I’m going to guess it might depend on the area?

tattybogle profile image
tattybogle in reply to Jazzw

Ah right .. maybe i''ve got the wrong end of the stick .,,, but yes hard to know exactly what the 'rules' are unless you read the local prescribing policy RAG (red amber green) codes carefully .. several have been revised during the last few years ..and different areas do have slightly different rules .

Jaydee1507 profile image
Jaydee1507Administrator in reply to tattybogle

I wanted to say all of this but my brain wasn't up to it today.

This is just more reasons for me to dig my heels in deeper and continue to fork out for T3 from my own pocket. There's yet another post today about being messed around with NHS T3 prescriptions. 😡

TiggerMe profile image
TiggerMe in reply to Jaydee1507

I'm cruising for a fight to be honest 🏋️‍♀️

I'll never be fully reliant on them that's for sure!!

Always keep a little something for the weekend 🤣

Delgor profile image
Delgor in reply to TiggerMe

Good for you and I hope all works out in your favour Eeyore. Personally my one and only experience of being under an NHS endo was absymal - paid out for numerous tests myself and still doing so. Although I was offered a 3 months trial on combo he wanted me to come off all thyroid meds first to see what was happening even though I'm so chronically fatigued already. At the end of the day I didn't need any more stress and so I'm still funding my own NDT although it scares me as to what will happen if I end up in hospital for any reason - sometimes life sucks😱

TiggerMe profile image
TiggerMe in reply to Delgor

I'm with you on that worry... should we just get a T3 dependent tattoo?

I don't mind buying my own but why should I? This isn't in my head or a request for unnecessary cosmetic surgery or botox? Forced to act like some underground druggie!

'You'll have to keep buying it on the internet as the NHS won't supply' 😡🤬🤬😡

Delgor profile image
Delgor in reply to TiggerMe

T3 dependent tattoo sounds good🤣

TiggerMe profile image
TiggerMe in reply to Delgor

If you have a smart phone you can set it up under your health setting which can be accessed through a locked phone by medics... assuming you are glued to your phone which alas/ thankfully I am not 🙃

Delgor profile image
Delgor in reply to TiggerMe

My brain not working today - perhaps I've caught a bug from Jaydee1507 🤷‍♀️

Batty1 profile image
Batty1 in reply to TiggerMe

I thought about getting a medical alert bracelet that has a list of my medications just in case something happens and I don’t have my phone. I’m not sure how those medical alerts bracelets actually work.

helvella profile image
helvellaAdministratorThyroid UK in reply to Batty1

They work by having an identifier - the medic can contact the issuing company to get details.

A small amount of ultra-critical info. will be on the thing itself. E.g. Steroid alert.

Everything depends on you, the individual, making sure the information is up-to-date.

They all depend on the attending person finding the bracelet (or whatever) in the first place. I'm sure medical people know the standard locations to look (wrists and neck being obvious).

TiggerMe profile image
TiggerMe in reply to tattybogle

🤣 you certainly have to be persistent, I'm good for not much else yet though so 💪

No mention of trial by the endo... just 3 month follow up and overseeing...

Endo letter
TiggerMe profile image
TiggerMe in reply to tattybogle

There is a clause in most CCG / ICB area's Liothyronine prescribing guidelines saying that privately sourced T3 does not count as a trial, and GP's should not take this prescription over. The only route is after 'trial by endo' THEN GP agreeing to take over prescribing via shared care agreement .

Lets hope they are as clueless about this bit 🤫(shush)

tattybogle profile image
tattybogle in reply to TiggerMe

eg. my lot have this lancsmmg.nhs.uk/medicines-l...

TiggerMe profile image
TiggerMe in reply to tattybogle

My area?!

SlowDragon profile image
SlowDragonAdministrator in reply to TiggerMe

which CCG area are you in

The guidelines apply to ALL CCG areas in U.K.

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

page 4

Patients who are currently obtaining supplies via private prescription or self-funding should not be offered NHS prescribing unless they meet the criteria in this guidance.

The consultant endocrinologist must specifically define the reason if any patient currently taking liothyronine should not undergo a trial titration to levothyroxine monotherapy, and this must be communicated to the GP.

and

In rare situations where patients experience continuing symptoms whilst on levothyroxine (that have a material impact upon normal day to day function), and other potential causes have been investigated and eliminated, a 3 month trial with additional liothyronine may be appropriate. This is only to be initiated by a consultant NHS endocrinologist. Following this trial the consultant NHS endocrinologist will advise on the need for ongoing liothyronine.

TiggerMe profile image
TiggerMe in reply to SlowDragon

I think the fact I had backed it up with the wonky DIO2 gene and had shown to have done my homework and mentioned TUK 😏 also filled in the before and after questionnaire I passed the trial bit...

TiggerMe profile image
TiggerMe in reply to SlowDragon

Soz... Gloucestershire

SlowDragon profile image
SlowDragonAdministrator in reply to TiggerMe

1264 prescriptions for T3 in last year

Typically that’s 6 prescriptions per person per year

openprescribing.net/analyse...

SlowDragon profile image
SlowDragonAdministrator in reply to TiggerMe

you can search by GP practice too

Change the drop down menu on Sub ICB to “a practice or practices”

Helps if your GP practice has an unusual name

If it’s called something generic you could be going through a long list

TiggerMe profile image
TiggerMe in reply to SlowDragon

Oh I'd only looked up the county before I started the referral route as they obviously do hand it out more than a lot of other counties.

Interestingly 2 prescriptions in October for my Surgery but none for the Practice that has just taken it over.... excellent ammunition for tomorrows battle 👏

Jaydee1507 profile image
Jaydee1507Administrator in reply to SlowDragon

Turns out my GP practice has 1 prescription. lol

Also this from my ICG. Explains a lot and is horrifying their conversion rate of T4 to T3, also that they exlude people with anxiety! Cannot believe that, well actually I can. Grr.

ICG T3 policy
arTistapple profile image
arTistapple in reply to Jaydee1507

There seems to be a rather superficial level of … what here? It seems to have been constructed from only really their own point of view. There is absolutely nothing here about the patient’s view. What are we? Lumps of meat? I can see why (again superficially) the NHS endo did not want to bother with me with those ‘guidelines/rules’ if they are similar in my area. I had a heart attack with no sign of cardiovascular disease. They check me annually and in the depth of my notes it reports no sign of cardiovascular disease but I am in with everyone with cardiovascular disease (which twenty years later off course I could now have, having been at least twenty years undiagnosed). Another victim of little education/training/experience of thyroid/hypothyroidism by both GPs and Cardiologists. What a blooming tangle? The one about anxiety really takes the biscuit. They just can’t be bothered with those patients because they might need a little more care to settle into treatment. They need to sit up and take notice.

TiggerMe profile image
TiggerMe in reply to SlowDragon

She did send a more thorough report to my GP, which they have just ignored so far...!

Regenallotment profile image
Regenallotment in reply to TiggerMe

Just up the road #herefordshireworcestershire

Hereford and Worcestershire T3 prescribing policy
TiggerMe profile image
TiggerMe in reply to Regenallotment

Hmmm, Glos yet to catch up with such knowledge

SlowDragon profile image
SlowDragonAdministrator in reply to Regenallotment

1433 prescriptions in Hereford and Worcestershire in last year

Typically 6 prescriptions per person per year

openprescribing.net/analyse...

tattybogle profile image
tattybogle in reply to TiggerMe

leads to this .. in case you hadn't found it aready:

ccglive.glos.nhs.uk/intrane...

TiggerMe profile image
TiggerMe in reply to tattybogle

Followed the link...

Is this what your got 😆
tattybogle profile image
tattybogle in reply to TiggerMe

soz . it was a pdf ...

ccglive.glos.nhs.uk/intrane...

go down this list to liothyronine T3/ amber/ and click on 'exceptional circumstances' ... takes you there

Edit :Also click on 'SCG' for copy of their shared care agreement

TiggerMe profile image
TiggerMe in reply to tattybogle

Thanks Tatty 'Exceptional' that's me, I have come across this before as it's in my ever growing unruly file (but forgotten or chosen to not let them put me off 🤷‍♀️)

Thought you were toying with me when the first link popped up 😆

arTistapple profile image
arTistapple in reply to tattybogle

Just an observation. If one lives in a completely ‘NO T3 ZONE’, which says it is fully complying with the rules and yet the statistics show no actual t3 being prescribed. How can they get away with this blatant non-compliance? So I (and others) can never have access to NHS T3 because we just happen to live in the NO T3 ZONE. This must be what is called ‘the post code lottery’. My area says that about three possible prescriptions called ‘outliers’. I have no idea what that means. Special cases? Which off course might be allowing ‘them’ to get away with it. Anyone know what ‘outliers’ refers to?

Jazzw profile image
Jazzw in reply to arTistapple

Exactly that, I’d say (“special” cases I mean). Outliers are probably people who were already on T3 before they changed the rules.

arTistapple profile image
arTistapple in reply to Jazzw

Ok that would make sense BUT it would still show non-compliance, I think. That is only a very partial compliance, I would say. Still someone would need a lot of persuading no doubt.

TiggerMe profile image
TiggerMe in reply to arTistapple

More likely staff or Dr's

Jazzw profile image
Jazzw in reply to TiggerMe

Hadn't thought of that.

SlowDragon profile image
SlowDragonAdministrator in reply to arTistapple

arTistapple

Which CCG area

Survey last year on non compliance

thyroiduk.org/wp-content/up...

Write to your MP

theyworkforyou.com/search/?...

arTistapple profile image
arTistapple in reply to SlowDragon

I am lucky I can pay. Others can’t. I will be pursuing this when hopefully my T3 kicks in. It’s the principle of the thing. I have not checked specifically what my area’s guidelines are. However they say they are fully compliant on Tanya and co’s work. Then their stats say no prescriptions. How can they possibly be compliant when there are no prescriptions?

SlowDragon profile image
SlowDragonAdministrator in reply to arTistapple

look them up here

Preston the lowest at 19 prescriptions per year

Kent the highest at 3361 prescriptions per year

Typically that’s 6 prescriptions per person per year

openprescribing.net/analyse...

tattybogle profile image
tattybogle in reply to arTistapple

you'd need to know precise definition of 'no T3 zone' .. ie, what does your areas regional prescribing policy actually say about prescribing T3 for each circumstance and what are the RAG (red amber green) codes for each ?

The rules aren't 'rules' they are suggested guidelines . each area can vote on precisely how they choose to implement them, and with what criteria eg existing patients allowed to continue , but no new ones allows to start .... or maximum dose is 10mcg or ...

arTistapple profile image
arTistapple in reply to tattybogle

The guy who rules here is possibly the most powerful person in endocrinology in the whole country, just at the moment. He makes no bones about being totally anti T3, in public. I fully intend to make a nuisance of myself. I really think this is a very bad situation and I am constantly looking for the correct word to describe it. It’s something to do with the Third Reich. One day!!

TiggerMe profile image
TiggerMe in reply to arTistapple

Good to have something to channel your anger into I find 😏 cathartic.. do it for the team 🥳

What is the collective noun for a bunch of manic Hypo's?

in reply to TiggerMe

Collective noun of tortoises is a Creep...

TiggerMe profile image
TiggerMe in reply to

Oh 🤣🤣🤣 I love it!... lets be Creeps

TiggerMe profile image
TiggerMe in reply to

Freaks...The Creeps 🤣🤣 weirdly appropriate and we all look great, bar a bit of dental work!

youtube.com/watch?v=NYE2uzQ...

ElleBee71 profile image
ElleBee71 in reply to arTistapple

”outliers” is a statistical term which basically means the data points fall outside the expected results. If you imagine a trend line plotted on a chart of data, the outlier data points will fall a long way from that trend line.

So you’re right - these are the “special cases” or the “exceptions” to the rule (oops I mean guidelines 😂😉)

arTistapple profile image
arTistapple in reply to ElleBee71

Thank you ElleBee71. I have seen this before somewhere else, this expression ‘outliers’ and never really understood it. I tried the usual places but nothing described it clearly. I thought it might be a ‘specialist’ reference within statistics itself. Only ‘someone who knew would know’. So thank you again, now I won’t be so ignorant when I am raising the questions I have in mind!

ElleBee71 profile image
ElleBee71 in reply to arTistapple

you’re very welcome! Glad I could help.

HandS profile image
HandS in reply to tattybogle

my GP refused to take over my T3 prescribing after Endo asked them to - he did warn me that might happen but told me not to worry as he would continue prescribing - which he does, and I get 6 months at a time after blood test and phone call . It doesn’t stop the GP ringing me every time I have test to bring up me low TSH 🤷‍♂️. In fact have another of those calls this morning .

It makes we weep to read what people go through on here: all for the crime of wanting to be well …….

TiggerMe profile image
TiggerMe in reply to HandS

It does make you feel like we would be better served seeing a Vet as they are far more about wellbeing and physical symptoms 🐶 along with a weigh in and a treat when leaving

HandS profile image
HandS in reply to TiggerMe

haha - I said the exact same thing to my sister in law last night ! And there’s the added bonus that they can shoot you ….

TiggerMe profile image
TiggerMe in reply to HandS

🤗 Exactly, quality of life no awful malingering

tattybogle profile image
tattybogle in reply to HandS

funnily enough i was in the vets the other day , woman comes in with her 'ancient cat in a bit of a mess poor thing ',... dithering over whether she should have the blood tests to investigate it for Hyperthyroidism , or have it put down.

The service is definitely good ... (and they have quality street on the counter )

mind you the blood tests were £190 .. and the medication would be £50/ month. .....ouch.

Vets are taught to take the time of Dobbins last dose of Levo into account when interpreting fT4 tests unlike GP's. (Apparently horses have it sprinkled on their breakfast oats)

TiggerMe profile image
TiggerMe in reply to tattybogle

We have all felt like that cat... oh to have the choice eh

How very civilized, yes it wouldn't be a cheap route but at least the understanding and knowledge is there and the willingness to treat your condition... probably cost about the same as a private Endo?

Probably get a good deal on worm and flea treatment thrown in 😉

DippyDame profile image
DippyDame in reply to tattybogle

I've always said I would be better consulting the vet!

Oh! And a cat has the option of sticking it's claws into the vet if it's unhappy!!

tattybogle profile image
tattybogle in reply to DippyDame

My cat's vet even allows it to "swear" during manicures .. "get off my F**in paws .. NO -ONE touches my paws"

DippyDame profile image
DippyDame in reply to tattybogle

Love it!!

HandS profile image
HandS in reply to tattybogle

yes I have a v good vet for horses, dogs and cats……so much easier to deal with than GPs!

TiggerMe profile image
TiggerMe in reply to HandS

Vets understand about quality of life and then a mercifully quick death the NHS seem to prefer to prolong suffering at every opportunity 😕

Mugs19 profile image
Mugs19 in reply to TiggerMe

That’s in spite of not having much meaningful conversation with their patients just like GPs

waveylines profile image
waveylines in reply to tattybogle

Actually, not quite like that for me..... When I saw a NHS Endo re a ndt. He wrote to the GP instructing them on what dose etc. The GP issued the prescription and then after four years of monitoring me the NHS Endo passed care back to the GP as I was very stable. GP had no problem with prescribing as they were just following the NHS Endo instructions. Now of course it's different and after being left alone for a few years they've decided it would be good to meddle with my dose! They know nothing about ndt so am not best pleased!! Sigh 😢

TiggerMe profile image
TiggerMe in reply to tattybogle

Script has just been sent to pharmacist!

    Jazzw     Jaydee1507     Delgor     Batty1     SlowDragon     Regenallotment     Hidden    Hidden    Citrinesun    turquoisea7

Who else… sorry walking over a muddy field and no glasses 🤣🎉🤣

  DippyDame   SarahJane1471   Mlinde  arTistapple  Misstee2

Run out of heads ups 🤗

Delgor profile image
Delgor in reply to TiggerMe

That's fantastic - Well Done You!!!!!😁😁😁😁😁

tattybogle profile image
tattybogle in reply to TiggerMe

hurrah .. mind you i now can't get the image of a 'myopic donkey stumbling around in a field trying to text with its hooves' out of my head ....

tattybogle profile image
tattybogle in reply to tattybogle

looks like they were just trying the "say no and hope she goes away" strategy.

Bunch of A*******'s

TiggerMe profile image
TiggerMe in reply to tattybogle

'myopic donkey stumbling around in a field trying to text with its hooves'

Bunch of A*******'s

Spot on 🤣🤣 on both counts!

I need to invent mud ski's with an attached magnifying glass.... off to my little stable

Delgor profile image
Delgor in reply to tattybogle

🤣🤣🤣

DippyDame profile image
DippyDame in reply to TiggerMe

Well done!

meme profile image
meme in reply to tattybogle

I saw an NHS Endo earlier this month. He gave me t3 and t4 tablets for 28 days. My GP to test blood after 6 weeks and Endo will see me in 3 months. The t3 and t4 are already on My NHS app for reorder. So I guess I can just re order when I like ?

I have a copy of the letter he sent my GP. That stated I could continue with the combination t3/4 or go back on NDT if I wished, depending on how I felt. Nothing about shared care.

tattybogle profile image
tattybogle in reply to meme

What CCG / ICB region are you in ?

they all do it a bit differently .. some have to use shared care agreements , some perhaps don't.

edit .and the details of what is written in shared care agreements will vary by region too. you may have one that says gp prescribes/ tests and endo oversees.

meme profile image
meme in reply to tattybogle

I saw an Endo in Lincolnshire. I told him my symptoms and he just said “ you need T3 !”

Citrinesun profile image
Citrinesun

Oh Eeyore 😐 I'm so sorry you have to go through all this, its unnecessary I can't believe how wrong they get simple instructions..

It's obviously a bit different where I am as my Endo just sent a letter to my GP to prescribe T3 and it was done when I spoke to the clinical pharmacist,

I don't get a hospital prescription like it seems some do for the first few prescriptions?

Endo said they will manage me for a year & do bloods but as far as I know my GP prescribed my first one as 'clinical letter' is clearly on my record now, X

TiggerMe profile image
TiggerMe in reply to Citrinesun

Kind of expected really as my surgery has form! Good to know it's working for you 🤗

Guess my Endo works in the same way as yours, had hoped the takeover by another practice would bring things up to speed but early days yet

SarahJane1471 profile image
SarahJane1471

🙈

DippyDame profile image
DippyDame

I need high dose T3-only to function but the endo I saw said ....levo! That, after 20+ years on levo nearly killed me.

I have the Dio2 polymorphism/ homozygous so very poor conversion

I have a form of Thyroid Hormone Resistance....most likely all my life, which results in low cellular T3

So, both glandular and cellular hypothyroidism.

And not a snowballs chance in Hell of being prescribed my therapeutic dose of T3.

So to function/ survive I have to source my own T3

If I have to be in hospital or in time, a care home, the best I can hope for is levo which would put me back to square one.....with no T3 I probably wouldn't last very long anyway!

My GP knows all this and has her hands tied behind her back. At first she was horrified but I have explained why I need to do this so she has now come to understand what I'm doing and now leaves me to it. A good doctor who cannot treat her patient through no fault of her own

My self medicating in her care puts her at risk so I heve signed a document stating that I take full responsibility for my use of T3.

T3 brought me back from the brink but the endo just didn't understand my inability to respond to levo or my explanation as to why.....or my need for a supraphysiological dose of T3-only.

I've given up being angry and am now resigned to taking care of my own thyroid health it's easier than trying to reason with people who have closed minds and deaf ears....and I feel in control.

it is a scandal of monumental proportion.

I know I'm not the only one by a country mile

I know people have decided to end it all because they felt so ill and desperate

I'm in Scotland and followed the excellent petition to Holyrood. Some time ago I emailed every MSP and MP about the T3 debacle....I received only a handful of sympathetic responses.

Following the petition the guideline became that if a patient needs T3 it should be prescribed....sounds hopeful.... but it needs an endo to agree that need. And we know how that pans out!!

TUK also have an ongoing campaign seeking change

And I know that there is very little hope that much will change unless the decision makers climb down from their lofty pillars and admit they have been wrong....and risk losing face!

I realise I'm very fortunate, despite ill health and dense brain fog I managed to work out why my health was declining. I'm also able to pay for my T3 and any tests required which is uncomfortably divisive and should not be. So much for the genesis of the NHS with free care from cradle to grave!

I had the support of my husband who did some of the things for me that I wasn't able to do myself. Had I not done this I would most likely now be bedridden like my grandmother before me.....or dead.

it took nearly 3 years of " digging" and trial and error before I began to feel some improvement. Unfortunately decades of declining cellular T3 has caused irreparable damage but I now function fairly well.....thanks to a therapeutic dose of 100mcg T3. I've made it to age 77 and my heart and bones have not suffered!!

I'm so, so sorry you have to go through this struggle to get the T3 you need. I expect it's a fairly low dose compared to mine and should be readily available

I can think of no other chronic condition ( life threatening even) where essential medication is refused.

I write this rant not seeking any sympathy but to highlight the absolute madness that is thyroid care and to share my despair at what seems like a never ending fight to see justice for thyroid patients.

Fingers crossed you get a prescription!

TiggerMe profile image
TiggerMe in reply to DippyDame

Thanks Dippy, it does all rather fly in the face of their patient safety strategy... Insight, Involvement and Improvement

DippyDame profile image
DippyDame in reply to TiggerMe

It's utter madness!

arTistapple profile image
arTistapple in reply to DippyDame

If you live in Scotland I assume you have thought of referral to an endo working in Scotland. Your case does seem to be highly unusual even for the stuff we read on here. Would your case be too outrageous even for someone very much onside for T3?

DippyDame profile image
DippyDame in reply to arTistapple

If you live in Scotland I assume you have thought of referral to an endo working in Scotland

I'm sorry I don't understand your point...

The endo I saw works in Scotland.....I live here and for numerous reasons would not wish to be treated far from home.

Like many, he was not a T3 enthusiast but fortunately I had done a lot of reading before I saw him and soon realised he did not know how to help me.

Charming.... but condescending!

When a professional tells you that taking T3 is like getting into a car....you can arrive safely but you might also die ( I paraphrase!) ....their professional credibility goes out the window. They clearly do not understand the issue.

Then again, most endos are diabetic specialists!

My case is not so unusual...as a high profile example, .have you heard of Lorraine Cleaver? There are other patients who have writen about their dire treatment.

Consider the late Dr Gordon Skinner and Dr John Lowe? They understood T3!

I'm quite sure there are people out there who are suffering and dying from thyroid disease, behind closed doors, because lack of appropriate treatment has caused their bodies to slowly shut down.....poor diagnoses and treatments.

Right now, after much "digging", I'm in control of my treatment. It is working, and I really don't want to have my health deteriorate again, as a consequence of treatment by medics who do not understand my condition....my body was slowly shutting down.

Would your case be too outrageous even for someone very much onside for T3?

My case is not "outrageous"....it is just badly understood by the people who are supposed to be able to treat their patients.

Man was able to successfully develope the James Webb telescope so the intelligence exists to do extrordinary things....but it takes the will. And in my experience the will to deal with patients who do not readily respond to fairly basic thyroid treatment is just not there.

If the treatment offered doesn't work then invariably the patient is considered non-compliant

Perhaps, in an ideal world, I might find an endo who might prescribe supraphysiological doses of T3.....but, the cost would inevitably have them running for the hills. Yet, vast amounts of money are ( rightly) targeted at other diseases.

At age 77 I'm not prepared to put myself through another battle to be heard. I know what is wrong and I know how to fix it.....it was hard work establishing that So, I'm not prepared to be told again, by anyone who cannot verify their opinion, as I can, that I am wrong.

Science is on my side and it provides the facts....for a large part the rest that is trotted out is just opinion.

My views are strongly held and over some time I have become increasingly intolerant regarding the current perilous state of thyroid treatment . .. I wish I had the strength and the clout to contribute to the battle to change things.

TiggerMe is absolutely right...." the T3 fiasco continues"

Take care!

arTistapple profile image
arTistapple in reply to DippyDame

Sorry DippyDame, my head was quite somewhere else. I totally respect your route. In fact it’s more than respect. I was just thinking of your costs and wondering if there was a way where you could cut costs. I meant your case from ‘their’ point of view was outrageous, not ours, us on the forum. I found and endo in Scotland. I have had to go there because I live in what I call a NO T3 ZONE. I am surprised at how cheap my prescription is but I am not on anything like your dose. However reading other posts I think the NHS actually pays more, which I find very odd indeed and as you say they would probably run for the hills. I have read the things you have highlighted. I am aware of Lorraine Cleaver. I am Scottish living in exile so I take keen an interest in what’s going on up there too. Anyway to get back to the matter at hand, no criticism was intended. I follow your posts and have nothing but admiration for you. I should have realised an experienced person like yourself would have covered all the bases.

DippyDame profile image
DippyDame in reply to arTistapple

Gosh, no offence taken...I'm guilty of getting a bit techy about T3 stuff.

Sorry if I sounded as if I was on a broomstick.....maybe I need Tatty's cat to keep me right!

My sons are also " exiles" over the Border!

We're all in this mess together....so, pleased Eeyore got her prescription.

arTistapple profile image
arTistapple in reply to DippyDame

Oh DippyDame I do hope no offence taken. I do care very much about your “techy about T3 stuff”. Honestly I am too. As you say “We’re all in this mess together”. So glad we have somewhere to talk!

DippyDame profile image
DippyDame in reply to arTistapple

Absolutely not

I'd probably be pushing up the daisies by now if I hadn't found this amazing forum....makes me "techy" ( maybe not the best word to use!) when I think of others who are wrongly stuck in the system

Take care

Barrister profile image
Barrister

My CCG told me about 6 years ago that my case wasn’t “exceptional enough” despite the fact that all brands of levothyroxine cause full body rash and head to toe itching. Finally, after yet another refusal from the CCG, I left the ball in my GP’s court and said “well what are you going to do about it?” “What happens when I end up in a myxodema coma and die because you “cant” prescribe a drug that obviously works and has been recommended by the NHS Consultant Endocrinologist”? (The Endo is a Professor and has just been honoured in the New Year Honours list). Within a week I had my NHS prescription.

Clemmie

TiggerMe profile image
TiggerMe in reply to Barrister

Well done you 👏👏 You just can't believe they will block something so essential for your health, wellbeing and basic function, it totally beggar belief when as you say to leave you untreated could lead to such awful outcomes, how they choose to ignore the obvious signs that your body is in distress, for me kidney function was the biggest scare as my mother had ended up on dialysis and that is a torturous existence.

As you say this isn't really my argument, the Endo has prescribed it so it is over to the GP if they feel they don't agree to pass it back.... in the past they have crumbled under persistent pressure and me producing documents that tell them how they ought to behave 😉

This is a fight that need fighting to make it easier for the many that will follow us

Mlinde profile image
Mlinde in reply to Barrister

Lucky you!

arTistapple profile image
arTistapple in reply to Barrister

Excellent piece of work.

DippyDame profile image
DippyDame in reply to Barrister

it says it all when we have to put them up against a wall before they listen and treat us.

The world has gone mad!!

TiggerMe profile image
TiggerMe in reply to Barrister

Couldn't tag you in earlier.... I got it!💃

Mlinde profile image
Mlinde

My GP arranged an Endo appointment, then I get a (truncated) text informing me that the appointment was canceled.

TiggerMe profile image
TiggerMe in reply to Mlinde

That sounds like the Endo has refused you... which they are allowed to do 😕

Mlinde profile image
Mlinde in reply to TiggerMe

Who knows?

Except I'd already gotten a text from the hospital confirming the appointment.

TiggerMe profile image
TiggerMe in reply to Mlinde

Did you see the GP's referral request? Did he put you forward correctly?

Mlinde profile image
Mlinde in reply to TiggerMe

This is an email from my gP

Following your appointment with one of our clinicians, you have been referred to a specialist at the hospital. Please find the attachment

The appointment has now been made for you. The appointment details are:

Date and Time: 30.03.2023 at 2.00 pm

TiggerMe profile image
TiggerMe in reply to Mlinde

You ought to be able to dig around and find the letter from your GP to the Endo putting your case forward... as this is what the Endo will base the decision on whether to see you or not

Mlinde profile image
Mlinde in reply to TiggerMe

No such luck. All I have is a pdf of the appointment from the hospital. Garbage in, gargbage out

TiggerMe profile image
TiggerMe in reply to Mlinde

No access to your GP records?

Mlinde profile image
Mlinde in reply to TiggerMe

I've never tried. It's such a hassle just connecting to the surgery, waiting forever on the end of a phone or for a response from the online request. I had to get 'aggressive' just to get a reply to an email ('a response would be curteous').

TiggerMe profile image
TiggerMe in reply to Mlinde

You should re able to request access via their website and then you can log in whenever to view your records... like you say dealing with them in person is soul destroying 😕

Mlinde profile image
Mlinde in reply to TiggerMe

Dear Eeyore100, Frankly, I've lost all interest in the entire thing after 14 years of it. As long as I can function reasonably well which right now, I can, I just want to let sleeping dogs lie wherever they are, lest they wake up and bite me. I've reached the point whereby the less I have to do with the NHS, the better off I am, it's just too stressful.

Gingernut44 profile image
Gingernut44 in reply to Mlinde

You need to ring your surgery and ask for a copy of your referral. Don’t be fobbed off, it’s legally yours. I did that before a referral back to NHS Endo. It’s a good job I did because the referral notes were greatly biased to the GPs ideas so I wrote a rebuttal and took that with me to my appointment. You need to be proactive.

They were very hesitant to give me a copy but I told them it was my legal right. I think my GP will be less frugal with the truth if I ever need a future referral 😊

Mlinde profile image
Mlinde in reply to Gingernut44

Dear Gingernut44,

I'm sure you're right but I've run out of enthusiasm, I'm fed up with tackling all the BS, I just want to get on with my life.

Gingernut44 profile image
Gingernut44 in reply to Mlinde

I’m so sorry that you’ve run out of enthusiasm - I know exactly how that feels but I’ve always been a stubborn b****r and I’m not letting them get away with the BS anymore. I’m sure my GP hates me but the feeling is mutual. He’s partly responsible for my ongoing problems so I don’t care what he thinks of me anymore 🤬

Mlinde profile image
Mlinde in reply to Gingernut44

Dear Gingernut44,

Well good luck with your quest, I really hope that you're successful. As for me, I really need to focus what energies I have on more creative endeavours than battling the morons who have abandoned the Hippcratic Oath in favour of the status quo. ¡A luta continua!

arTistapple profile image
arTistapple in reply to Mlinde

My NHS endocrinologist (at the request of an appointment from me via the GP) replied in a letter to my GP and without seeing me, giving instructions to titrate up the levo, with a side note “Hope this helps”. I got the distinct impression he was hoping the GP got help from this piece of advice - not the patient! I was more ill than I have ever been in my life - even when I had a heart attack I felt better than on that dose. When reported to my GP the reply was something like ‘Well you have plenty of room in your TSH.” They really have no idea.

Mlinde profile image
Mlinde in reply to arTistapple

Well, I was on 125mcg of Levo for several years which reduced my symptoms a little but clearly, I'm a bad converter of T4 to T3, so last year I increased the T4 to 150mcg with mixed results. I felt better but I had problems with my throat feeling tight and I got a hoarse voice, so the GP cut it back to 125mcg (my TSH was 0.02 mIU/L (0.35 - 4.94mIU/L). It took several months in fact, for my throat to return to 'normal'. I've yet to get another blood test. It all seems arbitrary to me and a bit of a lottery, the GPs are clueless, the Endos are a law to themselves and we, the patients are last in this NHS chain of indifference.

arTistapple profile image
arTistapple in reply to Mlinde

Could not agree more Minde.

Jaydee1507 profile image
Jaydee1507Administrator in reply to arTistapple

You may have responded to me on this thread as I got an alert. Thing is, HU won;t take me to that reply and the thread is now almost 100 replies long and I cant find it. Sorry!

TiggerMe profile image
TiggerMe in reply to Jaydee1507

If it was this morning it was just to give you the heads up that I have been successful... this time 🤗😬

Jaydee1507 profile image
Jaydee1507Administrator in reply to TiggerMe

Yes I saw that, congrats! I'm cheering you on with pom poms and virtual dancing and encouragement from the side lines. No way I would want to be put through similar. May not respond to this thread now as its too long and too hard to find the post!

TiggerMe profile image
TiggerMe in reply to Jaydee1507

Thanks, if you use the link on the email to contact Health Unlocked a very nice chap called Brett will sort out your misfunctioning

arTistapple profile image
arTistapple in reply to Jaydee1507

It has been a very popular thread. No worries. I can’t find anything now either.

Brightness14 profile image
Brightness14

Off topic but how much GT3 are you taking and for how long?

TiggerMe profile image
TiggerMe in reply to Brightness14

T3 just dropped to 12.5mcg Tiromel in readiness of starting Roma 2 x 5mcg next week

Had been on 100mcg x 6 T4 but I'll return that to 100mcg per day might add in an extra 100 per week also... as currently T4 is 14.4 down from 15.8 when previously taking 700mcg per week which was too low at 38%

I started taking T3 in August 2022 so have been between 12.5 and 25 mcg

Brightness14 profile image
Brightness14

It should have read T3 and not GT3 even if it's super fast!

helvella profile image
helvellaAdministratorThyroid UK in reply to Brightness14

Leaving it at least gave us a laugh. :-)

helvella - Editing HealthUnlocked Posts/Replies

helvella.blogspot.com/p/hel...

TiggerMe profile image
TiggerMe in reply to helvella

I'd be lost without the edit option... most of my original posts need doctoring once read back 🙂

TiggerMe profile image
TiggerMe in reply to helvella

Help pls is there an easy way to contact all on this thread to say I have accomplished the mission 🎉🎉🤗… script enroute to pharmacy

Walking in a muddy field with no glasses 🐕🤓

TaraJR profile image
TaraJR

TiggerMe arTistapple are you on Facebook? If so, join ITT Improve Thyroid Treatment. We have template letters for you to use, giving details of all national guidance and parliamentary statements on T3 to send to everyone you need to - endo, GP, MP, ICB. Pharmacist, PALS, Healthwatch etc.

TiggerMe profile image
TiggerMe in reply to TaraJR

Thanks Tara, I have joined ITT but I find Facebook massively irritating 🤣

I've just had another message for the surgery... they are looking into it 🙄

TaraJR profile image
TaraJR in reply to TiggerMe

I know some people do!

The template letter is in our files; I recently added the latest version at the top.

"T3 national guidance and statements guideline at 8.1.2023"

facebook.com/groups/ITTCamp...

Kowbie profile image
Kowbie

hello eeyore , I know your frustration, I can’t believe the way they treat us all , it’s a pity some of them don’t have the same problem they might understand a little better than they do at the moment hope you get on better than I have , good luck

Lovecake profile image
Lovecake

I get my T3 from private endo.

He said my GP should now prescribe it. I declined as don’t want to go through all the aggro, especially if it is declined after a while. I also don’t want to change brands as I don’t do well on some fillers.

My endo has now changed to requesting to see blood test every time he resends a prescription. This is causing me issues as I can’t seem to get blood out of fingerprick tests any more. I’m hoping my GP will oblige with more frequent tests. And even a private endo bleats on about my very low TSH - even though my FT4 is 50% through range and FT3 80%

It’s like getting blood out of a stone (well literally with my fingers at the mo 😂) and all I want is a small dose of T3. I’d like to try T3 only, but don’t have the strength at present.

I’m glad you’ve finally got your prescription and hope you don’t have to go through so much hassle again. ☺️🧁

TiggerMe profile image
TiggerMe in reply to Lovecake

Hi, it is a bloomin drama whichever route you take isn't it 🙄I've got the anger in me at the moment so I'm unstoppable in this my first battle... no doubt of many...

Your bloods look very like my optimal so no doubt trouble ahead😫 I've just done 10 weeks on reduced T4 ( to raise my TSH 🙄Endo speak!) I don't recommend it (but you don't know unless you try).... down to 24% now, fog returned below 50%, weight increasing, even less energy reserve, possibly reason for current anger and intolerance of the world?😠🤣

The whole finger prick drama must be mind over matter, it never flows... but then an hour later when you take the plaster off it bleeds and it hurts so much more than a proper blood draw.... just another weird hypo blood thing?

Lovecake profile image
Lovecake in reply to TiggerMe

I had the “let’s reduce your T4 to see if the TSH will raise a bit” last January. I felt dreadful. Like I’d hit a brick wall and it causes bad fatigue and migraines. So I messaged and told them id put my dose back up as I couldn’t function.

My GP has just authorised a thyroid blood test for me (she’s my favourite 🤩). So I’ll get that done and then have a zoom call and politely tell the endo “I’m not over medicated and I’m aware of the possible long term issues” blah blah blah.

My life is rubbish without T3 so I’m not prepared to give it up. And it’s not like I want to go out and party past 8pm! But I do need to be able to drive to check on my mum if there’s an issue any time night or day. (Rarely happens thankfully)

And if I can’t look after my grandsons once or twice a week then what am I here for?

I look like I’ve been using a hammer and missing the nail after doing my test 😂 2 fingers on each hand with plasters. Totally get what you mean. Predict text gets even worse when you’re pressing 2 letters at once due to bits of plaster sticking out………

Onwards and upwards 🤪

DippyDame profile image
DippyDame in reply to Lovecake

Can't they teach them that TSH and FT4 fall when T3 is added. It's not rocket science!

Beggars belief!

TiggerMe profile image
TiggerMe in reply to DippyDame

Might get a T-shirt printed for my next visit.... too subtle? 🙃

DippyDame profile image
DippyDame in reply to TiggerMe

Dare you!!

Lovecake profile image
Lovecake in reply to DippyDame

He was ok down to 0.02 but at 0.01 he starts fidgeting.

One minute I’m a person, not a number. Then I’m not ok on 0.01 again! Getting on my wick now (must remember to not say that in front of 3 yr old grandson as he says the same to other grandparents 🤭)

But we can all roll our eyes on here as we know we are ok 🙃

DippyDame profile image
DippyDame in reply to Lovecake

He would self combust if he saw my labs on high dose T3-only.

We're not machines that can be calibrated to a set point...and they find that difficult

They had a better grip on thyroid hormones a hundred years ago when we weren't just numbers to be slotted into convenient ( to them) little boxes.

I was once having a discussion with my 4 year old grandson when my son entered the room and said, " Don't argue with Granny you won't win".

I might not have so much clout with adults ....AKA medics!!

Better go....I feel another rant starting!!

Lovecake profile image
Lovecake in reply to DippyDame

My backside won’t fit into a little box 🫣

DippyDame profile image
DippyDame in reply to Lovecake

I rest my case!!

TiggerMe profile image
TiggerMe in reply to Lovecake

That'll be the 0.01 turning you into a monster and teaching innocent 3 yr olds your evil ways 😆

Lovecake profile image
Lovecake in reply to TiggerMe

😂 that’s on top of the fact I’m already crazy grandma

TiggerMe profile image
TiggerMe in reply to Lovecake

Oh no the grand parent hierarchy dilemma, stay crazy 🤪

arTistapple profile image
arTistapple in reply to Lovecake

I think more and more each day similar. It feels like forever to have got this far. I have no intention of giving up my private prescription because of exactly all that you outline but I want to do something, if I can, to help support those who can’t afford it. My endo is writing to my GP so this will be interesting. My guess is if the protocols affect her (GP) then I will hear from her. However if it’s something to discuss with me, FOR ME, adult to adult, I won’t hear a blooming thing.

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