Fight for T3 : Hi there, Having reached a stage... - Thyroid UK

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Fight for T3

posthinking01 profile image

Hi there,

Having reached a stage where I need help with T3 I am horrified that nothing has changed in the 25 years I have been 'fighting' for my own health with thyroid issues. I did at one time by going to Belgium get prescribed NDT Armour and ERFA but it did not agree with me at all. However, now my thyroid has completely gone with the autoimmune attack it has endured for so many years - I now once again are unable to get old of T3 via the NHS - it is a disgrace. I am not responding to T4 only any longer - I am making contact with Sajid Javid's office and would ask that anyone who has any 'stories' to tell - if permission granted by the moderators you post them on here or to me personally - I am also making an appointment with my local MP - and will take these 'stories' with me - so would need your permission to circulate them to those in 'higher places' - I will also be contacting the British Thyroid Society or whatever they are called - as I hear from my endo who said she cannot prescribe this medication that the companies who were profiteering have just been fined £100,000,000 - so will this bring the price down? I have just been in touch with Belgium and the pharmacy I used to use charge 10 Euros only for T3 30 tablets. It is outrageous that we are being 'used' like this by the authorities who should be protecting us and by endo's not fighting for us.

My other half has just looked up the data re the fine - and Advanz were fined back in 2017 - not just recently - they went from £20 for 30 tablets to £248 for 30 tablets in 2017 - so someone is pulling the wool over our eyes - the consultant is saying it is the GP and the GP is saying its the consultant - I am so cross that I intend hammering away at everyone I can until this gets sorted out it is outrageous. The endo is willing to help me if I buy them but can't prescribe - how ridiculous a situation is that.

There is a petition on the parliament website that should be signed if we are serious about getting something to change.

petition.parliament.uk/peti...

Anyone any more ideas please let me know - I am on a mission now.

A

139 Replies

I get T3 prescribed by an endo in the UK so endos can prescribe it.The cost from a UK pharmacy of 100 20mcg T-bone Henning tablets is £50. This was given on another post on this site from someone who buys it on a UK prescription.

NWA6 profile image
NWA6 in reply to Lalatoot

* Thybon

Lalatoot profile image
Lalatoot in reply to NWA6

Damn autocorrect!!!

radd profile image
radd in reply to Lalatoot

🤣 ... T-bone sounds much better!

Lalatoot profile image
Lalatoot in reply to radd

It was a mis-steak 🤣

radd profile image
radd in reply to Lalatoot

🤣😆🤣 😆

BrynGlas profile image
BrynGlas in reply to Lalatoot

It drives me daft too!!!

Do you get it via endo o n NHS ?

I get it on the NHS.

I also get mine on the NHS ! You need an NHS endo to say you need it! Then a a 3 month trial at your own expense! Blood tests proved I wasn’t converting T 4 into T3! Just returned from Kefalonia and you can buy T3 at any pharmacy over the counter for €2~30 a packet

Crumbs, why the trial at own expense if through NHS? That seems outrageous.

BrynGlas profile image
BrynGlas in reply to mountainice

Because the NHS has been paying up to £300 a pack up until now it seems.

They are making it more difficult for patients to be diagnosed in order to cut costs on any Thyroid meds, even Levo apparently.

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

NHS been paying substantially less more recently…now £101 per pack…..needs to drop at least by another 75%

BrynGlas profile image
BrynGlas in reply to SlowDragon

Yes, I can't pay that at the moment.

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

If T3 is prescribed on NHS it’s free to the patients….

ilgsds profile image
ilgsds in reply to SlowDragon

Yes here in Scotland I get it free prescribed by a very enlightened Endo consultant!

Was it easy to source in Greece? Now that travel is opening up a bit more I'm considering a trip over to get some. I have some cancelled flights with easyjet that I can book to anywhere in Greece at any time, just trying to decide when and where is best to go!

You can go anywhere in Greece. Big towns better. They might have to order them. I am in Thessalonica at the moment. Just bought 6 boxes less than 2£ each. The only think i have to go and buy them from different pharmacies. Without prescription

BrynGlas profile image
BrynGlas in reply to Fluffysheep

Pm me if you need to buy online.

It depends where you live in the uk as to whether you can be prescribed it on nhs, lucky you

NWA6 profile image
NWA6 in reply to Lalatoot

🤗 I knew it was but was too knackered yesterday to engage.

mountainice profile image
mountainice in reply to Lalatoot

Is that private prescription, as I pay £100

Lalatoot profile image
Lalatoot in reply to mountainice

I get mine on the NHS from my GP surgery. Initially you have to have a trial from an NHS endo. The endo writes the prescriptions on the NHS and monitors you for 3 to 6 months usually. Then if successful, the endo writes to the GP to continue with the prescription.

mountainice profile image
mountainice in reply to Lalatoot

So you got Thybon Henning on NHS ?- I thought it wasn't registered (or something like that) for NHS use.

Trouble is I self-treated with levo initially as got nowhere with NHS/ Private endos (especially as the private one was also NHS!). I don't know how to get everything swapped over to NHS. I am still buying levo from abroad - the words of the last private professor I saw was that they were cheap enough to buy, but I really would like confirmation that I need them and have them on NHS. Now that I understand more about my thyroid problems I feel I should write to the endos that said I had nothing wrong. I did write after starting myself on levo and the one I wrote to replied but said I am bound to feel better on a hormone!

I do have a note I found on my gp record from my now-retired gp who wanted to trial me on levo in 2013 but I never got it! She never told me her plan and I knew nothing about thyroid at that time, only that I kept going backwards and forward to the doc about not feeling well. All that time I thought it was still to do with my B12 deficiency, and then after that Vit D severely low deficiency, plus I had zinc deficiency, but no-one joined up the dots. Talking about joining the dots, this is exactly what my current gp said to me when she set me on the path of millions of tests and doctors to find out what was wrong, resulting in my being told I have severe health anxiety. I wrote to the psychiatrist who gave that diagnosis, no reply of course. I really feel like writing to all 3 again (actually 4, if you include the first consultant who was for old age things who said I had Meniere's Disease).

marigold22 profile image
marigold22 in reply to Lalatoot

Lalatoot I get my T3 on NHS from an endo at hospital. They insist on still making me get it that way. It would be so much easier if they handed over to my GP. Never any mention of that.

Lalatoot profile image
Lalatoot in reply to marigold22

The guidelines say that after the trial period the endo requests the GP to continue the prescription. Don't know why that hasn't happened for you. Also when my endo was prescribing from the hospital, I got a paper prescription and I could take it to the chemist - I did not use the hospital pharmacy.

marigold22 profile image
marigold22 in reply to Lalatoot

I have to use the hospital pharmacy; hospital is 20 miles away as I moved but decided to stay with that hospital to save me having to deal with a different hospital. I was a weird case as I had been on T3 only since 1995; when GP tried to stop T3 when the furore started I insisted she did anything to let me keep it. It was then that I was sent to the endo.

Lalatoot profile image
Lalatoot in reply to marigold22

If you have been with the endo a long time and there is some measure of trust then maybe they would give you 2 presrcription at the same time one of which could be post dated. Save monthly trips.

marigold22 profile image
marigold22 in reply to Lalatoot

Thanks Lalatoot I do get 6 months of T3 at a time

penny profile image
penny in reply to mountainice

Wow, mountainice, that sounds a lot. I’m paying just over £11 for 100 for Tiromel without prescription.

mountainice profile image
mountainice in reply to penny

Well, I was buying Tiromel from Turkey for £26.29 (including a small discount) for 100 25mcg tablets. When I saw the last private endo he prescribed Thybon Henning which I did find better, felt like a new me and that is £100 for 100 tabs 20mcg

Ness21 profile image
Ness21 in reply to mountainice

Please could you pm me the details too. Thankyou

mountainice profile image
mountainice in reply to Ness21

Hi, I can pm you but which details do you mean?

penny profile image
penny in reply to mountainice

Things have changed in the interim (Brexit) but I did have a German supplier of Thybon, 50mcg 100 off for about £45, but that was a few years’ ago. I’ve not been in touch with them for a while.

Fluffysheep profile image
Fluffysheep in reply to penny

Where from please (please pm me if you can as not allowed to name on here).

BrynGlas profile image
BrynGlas in reply to penny

Me too I paid £85 for 7 packs including shipping. Here within a week.

Lalatoot profile image
Lalatoot in reply to mountainice

It is now £50 per hundred at UK pharmacies on private prescription. There is a post somewhere on this site which stated that the other day.

ATVMWF profile image
ATVMWF in reply to mountainice

Mountainice, I've just started on T3- 5Mcg(SigmaPharma-private script). 2 months supply cost me £227 inc P & P. Had to source a sympathetic doctor via Thyroid U.K. list as endo referral refused when G.P. wrote to them. Scandalous price but worth it if it makes you feel human...

SlowDragon profile image
SlowDragonAdministrator in reply to ATVMWF

Much cheaper if you can get endo to prescribe 20mcg and cut in to 1/4’s

50p per tablet

ATVMWF profile image
ATVMWF in reply to SlowDragon

Yep, I'll have to work on her to do that, or source a supply from abroad.🤣

mountainice profile image
mountainice in reply to ATVMWF

That is a lot! Mine are 20mcg and I cut them into quarters and take two quarters a day and there are 100 tablets and they cost £100, so not too bad when you think about it. The price has gone down so will be even cheaper.

BrynGlas profile image
BrynGlas in reply to Lalatoot

Yes, but you need a GP to refer you to am Endo who is Thyroid trained and not Diabetes trained. I have found the Endo I want, he is NHS only. But my GP refuses to refer me to an Endo in another Health Board area.

Lalatoot profile image
Lalatoot in reply to BrynGlas

My endo was very much diabetes trained! She now does diabetes only. As i was originally hyper I had been on her books for many years maybe that was one of the reasons I got T3. Also I had all the arguments lined up and set down on paper and she took note of them.

BrynGlas profile image
BrynGlas in reply to Lalatoot

Oh well, if you got there in the end that is fine. But the treatment generally if Levo doesn't suit you is appalling in the extreme. You would never know if you weren't hypo.

That is why my family think I am a complete head case, because they don't have the problem, and just think I am crackers, as I get Levo from NHS but still complain that I feel ill.

I can see their reasoning, but...........

radd profile image
radd in reply to BrynGlas

BrynGlas,

If your GP considers you need a referral then you have the right to choose whom you are referred to and where, even if in another health authority.

.

nhs.uk/using-the-nhs/about-...

BrynGlas profile image
BrynGlas in reply to radd

Hello Radd,

Yes, but I live in North Wales at the moment and I am unsure of exactly what the rules are here. Although I did fight the Health Board some years ago, I had a recurrence of epilepsy after some years of not having fits. I sent my licence in straight away and investigated the local Neurologist, who as it turned out was completely rubbish and I forced the Health Board to pay for treatment for me at the Walton Centre in Fazackerly, Liverpool, because I had no faith in the Neurologist here.

So I know I can do it, but there is no point now me fighting for treatment in South Wales, because I am moving back to England by early October at the latest. So I am saving myself for a fight in England now. LoL

I am up to my eyes in packing, at the moment and don't want to take anything else on board for a while yet because of that.

Wow fantastic mine told me it is banned - is this now you get it or years ago - would you mind telling me what area you live in.

I live in NHS Grampian. I have been getting it for 2 years.

ilgsds profile image
ilgsds in reply to Lalatoot

I get it in Tayside no problem

My GP refuses to allow me to say 'T3' to him because he insists it is an illegal drug.

Mine said it was illegal!

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

My GP said

“You can’t take that ….it’ll kill you!”

She has been utterly astounded at its opposite effect….of giving me my life back

BrynGlas profile image
BrynGlas in reply to SlowDragon

Yes, I do feel for GP's because they think they have been taught correctly, but they don't have a clue do they?

I can also appreciate the fact that stroppy women like me upset them by telling them that I know more about my hypothyroid than they do.

He doesn't have a clue about the laws concerning illegal drugs, otherwise I would have been arrested by now, surely. I refuse to lie about T3.

why are these gps so clueless

penny profile image
penny in reply to SlowDragon

When I told my GP that I self-medicate with T3 he told me to keep going.

SlowDragon profile image
SlowDragonAdministrator

56,000 prescriptions for T3 on NHS in England in last year

Searchable by CCG area

openprescribing.net/analyse...

Price has dropped considerably on NHS from £268 per 28 tablets 20mcg

Now £101 per 28 tablets

So on typical 3 x 5mcg per day that’s £70 approx per month

Private prescription enables access to Thybon Henning 20mcg tablets at 50p per tablet

So, on typical 3 x 5mcg per day that’s £12 per month

Depends where you are and if endo is agreeable to prescribe T3

Most endocrinologists are diabetes specialists

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

Bless you for that information thank you

SlowDragon profile image
SlowDragonAdministrator in reply to posthinking01

I also get my T3 on NHS

More on my profile

Ord’s, gluten intolerant, vitamin deficiencies, heterozygous DIO2

Thanks so much I can now 'hit' the endo with it.

what happens if you get a private prescription and the endo then retires, which could happen with older endos - would I then be stuck?

SlowDragon profile image
SlowDragonAdministrator in reply to mountainice

Possibly

Would have to either

A) self medicate

B) find different endo

I'm scared that will happen and I am just starting to feel right.

BrynGlas profile image
BrynGlas in reply to SlowDragon

So, I buy what I can get and what I can afford.

Do we have any clues about what seems to act better in the T3 stakes?

I take Tiromel, I have never even heard about the Thybo Henning until today.

mountainice profile image
mountainice in reply to BrynGlas

I hadn't until it was prescribed, and find I became even better on that than Tiromel. A bit more energy.

BrynGlas profile image
BrynGlas in reply to mountainice

Oh, well, that is good news then, thank you. I am doing much better on Tiromel, but I can't stop thinking that there is something missing. I wouldn't mind trying either another brand, or perhaps NDT

I too had a fight to get T3 from the NHS - I sourced it for 30 euros for 100 20ug thybon-henning tablets using a private prescription, from Germany, until Brexit put a stop to that, but the Endocrinologist had accepted that my blood tests showed conclusively I am a poor converter - get your nutrition right, according to your blood tests, or that will be blamed... there was some argy-bargy between the GP surgery and the Endocrinologist when Brexit meant I had to get my next prescription from a UK source, but that was to do with oversight - the GPs openly admitted they were not happy taking responsibility for issuing the prescription, so the Endocrinologist has appended his name and touch wood, all is working. Like you, I have written to my MP, and the Secretary of State for Health about this too, and am happy to disclose personal information as this is an issue that affects more women than men, and I believe, sadly, that that is why it has not been sorted out before - the profiteering is just amoral although I believe the brothers in Essex were prosecuted, it's not actually seen as a crime - it should be - the NHS belongs ( at the moment ? ) to all of us.Petition signed and shared.

BrynGlas profile image
BrynGlas in reply to BumbleyM

I would be happy to disclose sensitive info too. I can't see any reason not to do so. We have nothing to hide.

I gave up on GP and went to private endo. Now get T3 from them at £100 for 100 tablets (3/4 a tablet per day). My results weren’t off enough for GP to accept I wasn’t properly medicated. T3 has made huge difference to quality of life. I also got hit by long covid so dread to think what I’d be like on levo only now. Wouldn’t be able to keep working as currently do.

SlowDragon profile image
SlowDragonAdministrator in reply to Cica77

Thybon Henning 20mcg tablets now 50p per tablet

£50 per 100 tablets

I pay £100 for Thybon Henning 20mcg 100: tablets on private prescription

SlowDragon profile image
SlowDragonAdministrator in reply to mountainice

They are now £50 for 100

Price dropped last week

on private prescription. I have this note on my gp record, hope ok to share:

Per Clinic ltr 12.8.21 - Levothyroxine dose 75mcg om for six days a week and 100mcg om once a week.

Plus consultant requests gp to prescribe T3 5mcg bd.

T3 is also known as Liothyronine which per LMSG / UHL Formulary is RED (only hospital can issue) but there is conflicting information on LMSG which states can be rxed in primary care if SCA supplied and

Per S1 - Liothyronine is available as 5mcg tabs - cost is £198/56tabs/month while 10mcg tablet cost is £148/28tabs but it is not scored.

Plan: Endocrinologist (?private) has not supplied an SCA and I'm unsure of the document's advice - ?gp can prescribe Liothryonine after 3mon trial issued by Endocrinologist -> I've emailed LMSG today.

I googled and LMSG is Leicestershire Medicines Strategy Group, but I don't know what SCA is - do you know by any chance?

SlowDragon profile image
SlowDragonAdministrator in reply to mountainice

Guidelines usually will not allow you to transfer to NHS if initially prescribed via private consultation

It’s just a way to reduce numbers of T3 patients getting T3 on NHS

You would probably need to see NHS endocrinologist, and 3 month trial on NHS before funding would be agreed.

impossible to get Thybon Henning on NHS.

NHS T3 prices and brands

20mcg £101 per 28 tablets

Morningside, Teva or Mercury Pharma

10mcg £148 per 28 tablets

Morningside only

5mcg £90 per 28 tablets

Morningside only

BrynGlas profile image
BrynGlas in reply to SlowDragon

I would never trust Teva brand for anything again!

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

Teva T3 is apparently fine

BrynGlas profile image
BrynGlas in reply to SlowDragon

OK, but I think I'd try the others first! LoL I am taking no chances !!!! ;-)

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

Yes, I would be reluctant to try it …unless lactose intolerance meant had to

BrynGlas profile image
BrynGlas in reply to SlowDragon

I am glad you approve of my stance! LoL

tzracer profile image
tzracer in reply to SlowDragon

Except for splitting! I've been getting 20mcg mercury pharma prescribed from the hospital most of the time and they're scored and cut quit easily into quarters. (Similar to the cytomel I started on) . Have been given 20mcg Teva and they're a nightmare to split, pill cutter shatters them, brand new scalpel blade is struggling as they are hard and much more domed. Haven't noticed any difference, but only been on it 4 days.

but I don't know what SCA is - do you know by any chance?

SCA = Shared Care Agreement (arrangement ?)

(Not so) technical meaning

~ it 's that bit where NHS endo asks GP to agree to continue prescribing T3 after the endo's trial of T3, but still sort of under the endo 's instruction/ authoirity .. but i think? the cost is then paid by the GP funders , rather than the hospital's funders.

It is what allows the GP to prescribe T3 ,when without it they are not 'allowed' to

Sort of ....

thank you

BrynGlas profile image
BrynGlas in reply to SlowDragon

Still on private script?? How much is a private script?? I have no idea.

SlowDragon profile image
SlowDragonAdministrator in reply to BrynGlas

Private prescription costs the price of consultation with specialist…typically £250 initially and cheaper at review

Plus cost of the medication

So most U.K. patients getting T3 on private prescription get Thybon Henning 20mcg as it’s cheapest option

£50 per 100 tablets

BrynGlas profile image
BrynGlas in reply to SlowDragon

But Tiromel is £10 for 100. It wouldn't pay me to go private would it?

When I move to England I need to know where the best Endo is. I have just asked Dionne for the lists of private or NHS.

I am hoping to move to North Staffs, but I might be convinced to move where the best Endo is.

Wow, yes, it works out much cheaper. What if he retires?

Thank you for the petition link and all you are doing posthinking01.I have been on Levothyroxine for 16 years and have regularly gone to my gp over those years saying I still had underactive symptoms only to be tested (just T4) and told ‘you’re in range’.

Since joining this forum recently I’ve learnt so much including that I have Hashimotos.

I had a throat scan on nhs recently due to difficulty swallowing , from the scan I was told my thyroid very small due to it not needing to do much through years of taking Levo .

Anyway, I won’t relay the full experience but will write a letter about all of this when I feel a bit better. I just wanted to let you know I pushed to see an nhs Endo, she sent me for a Short Synacthen Test which I had yesterday to check adrenals, if all ok they will start me on a trial of T3. Endo said I’m lucky in my area (North Hampshire) as I can get a trial. She also told me my difficulty swallowing can be ‘imagination’! I have details of a private Endo from on here who I plan to see for guidance with my T3 trial etc.

Good luck with your journey 😊

I got mine on nhs but in 2017 I had to fight for individual funding which took 10 months, my Endo gave me private prescription to keep me going. Gp's don't like to fund it, I had to get prescription every 3 months from Endo at hospital. My MP Jon ashworth shadow health secretary helped me with funding.

BrynGlas profile image
BrynGlas in reply to endomad

Yes, I suspect my GP is only in medicine as a way of making big bucks, so he will fall over backwards to save money.

He bought out at least 3 more local surgeries in the area as GP's retired.

Now we are reliant on one GP who is definately not up to par. And who is very selective about who he sees. The whole area is complaint about poor service from him, and not all about Thyroid issues.

There’s actually an MP circulating a petition about this issue at the moment and asking people to contact him with their stories. Might be worth contacting him? I can’t find his name at the moment, but thyroid uk were promoting it.

BrynGlas profile image
BrynGlas in reply to Horsey07

Where can we find this MP's name and contact details?

Horsey07 profile image
Horsey07 in reply to BrynGlas

This link takes you to the right place. facebook.com/RedLabour2016/...

Horsey07 profile image
Horsey07 in reply to BrynGlas

This is the link for the petition about pricing of generic medicines.petition.parliament.uk/peti...

Thank you for posting and I'll definitely read and sign later.I too have been on levothyroxine only for many years and just 2 days ago went private to see someone who was suggested to me by SlowDragon. I'll post on here separately re this but the consultant has offered to prescribe me 100mcg (I think mcg) of T3 x 3 day and his secretary will advise me how to purchase from Germany. I'm sure he said they had just come down in price from £100 to £50 per 100, 40mcg tablets. Spoke to gp's yesterday re another issue and on discussion he too said the government had just been fighting the drug companies re cost of T3. He thought it was expensive to buy them but I feel that even if one tablet costs a £1 then less than a pound a day to feel better is well worth it.

SlowDragon profile image
SlowDragonAdministrator in reply to Baggiesfan

It would definitely NOT be 100mcg T3

You probably meant your levothyroxine dose at 100mcg

How much levothyroxine are you currently taking?

Usually levothyroxine is reduced slightly

With SMALL 5mcg dose T3 added at 3 x a day

And the tablets are 20mcg (not 40mcg)

You're very right, my typing error SlowDragon . He wants me to start on 10mcg x 3 a day. I did think it was a bit high to start on after reading other posts on here but I'd had my bloods done the week before as advised and he dosed from that. He definitely said 40 mcg tablets, cut my 100mcg levothyroxine to 75 and add in T3 10mcg I'm sure but I'll obviously check when something arrives from his secretary. Looking forward to feeling myself again hopefully x

SlowDragon profile image
SlowDragonAdministrator in reply to Baggiesfan

I think you need to double check that

Vast majority of patients are on 3 x 5mcg T3

And you need to start VERY VERY SLOWLY

Typically

Reducing levothyroxine for 2-3 days before adding just 5mcg in morning

See how that is, then 2-5 days later adding 2nd 5mcg dose approx 10 hours after 1st dose

a week or so later adding 3rd dose and change dose times to roughly equal 8 hours intervals

I am still on 5mcg twice a day only.

Oh dear, it does sound a lot now what he said doesn't it? I'll await his letter then question it if it is still what I think. He did say any problems to let him know. I'm so disillusioned now, just when I thought I was getting somewhere. He did say reduce levo to 75 from 100 but not before starting T3. I feel like I'm fighting a losing battle 😥

Thanks for your reply x

SlowDragon profile image
SlowDragonAdministrator in reply to Baggiesfan

The advice to start slowly is from members on this forum

Some people can start quickly, many find it important to start slowly and increase slowly

I would prefer slow as I seem to be sensitive to many meds. How on earth can I challenge a consultant when I went to him specifically for T3? I so hope I heard him wrong but I'm pretty sure that was what he said.

SlowDragon profile image
SlowDragonAdministrator in reply to Baggiesfan

You don’t need to challenge him

You just start T3 cautiously

You will likely find that’s what the detailed instructions say when they arrive …..anyway

Morning

This is so relevant to me at the moment. I was refused a referral to NHS Endocrinologist twice because my bloods were “in range” so in desperation I went privately and was prescribed T3. The Endo wrote to my GP requesting that T3 be added to my Levo prescription! My GP refused because because it wasn’t initiated by an NHS Endo.

I did kick up a bit of a fuss, which I didn’t really like doing because my GP is fantastic and was so sympathetic about the whole situation. He wrote to the local hospital Endocrinology department and yesterday he rang me to say he would prescribe T3. I have to have a referral but that will take so long that they have agreed to allow him to prescribe in the interim.

I realise that I’m lucky and it’s a much harder struggle for others but it is definitely worth the fight and I will absolutely sign the petition and help others if I can

Signed and shared on Facebook

Brilliant great - love your 'tag' I am having a hot flush at the moment and saw 'mountainice' and in my mind I was imagining lovely mountain ice and it helped me cool down.

Ha ha, that came about many years ago when I was having mental problems and I had been in a psychiatric unit in 96 and 97 which I believe now was caused by B12 deficiency as well as thyroid. Anyway, many years later I had a vivid dream/waking dream about white horses and a mountain and me being on top of the mountain and feeling I could conquer the world. I even wrote poems about it. That is how 'mountainice' was born.

It’s unfortunate that we’re in this situation but I love your attitude to fight against it.

I’m the same as many of you. I’ve suffered symptoms of hypothyroidism since my late teens. I’m now 52. I’ve also had vitiligo since I was 12. GP doesn’t accept I have Hashimoto’s as blood tests don’t show antibodies. I had a scan several years ago which showed I only had a “tiny, withered piece of thyroid left”. NHS endo says my levels are “fine”. FT3 is at the bottom end of the range. “Discharged”. My weight keeps on going up. I can’t even say what it is now, I’m so ashamed. My ankles are always swollen, it’s hard to walk. I gave up work as I just couldn’t manage it anymore. I had a source for T3 back in 2017 (the only time in 30 years I ever lost weight) but the last 2 times I ordered, I’ve received nothing. And lost £180 as a result. Not working, it’s going to be difficult to afford the crazy prices for sourcing T3 myself from somewhere new.

I have given up.

I had given up.

posthinking01 You’ve given me a tiny ray of hope. I’m signing the petition and will also write to my MP. I am just so weary with it all. It’s exhausting.

SlowDragon profile image
SlowDragonAdministrator in reply to Juhu123

Juhu123

Suggest you write a new post with latest thyroid and vitamin results

Members can advise on how to make progress

Juhu123 profile image
Juhu123 in reply to SlowDragon

Thank you - I will, just as soon as I get them done. GP only ever does FT4 and TSH. I’ll get an up to date set done privately. Forgot to add I am on levo. Been on it since age 19. Apparently it’s enough 🙄

Oh bless you - I feel so for you - I was fighting for 15 years to get help and so know how you feel. Keep your spirits up - remember there are a lot of people fighting this in the background - it has to change it cannot go on like this. Endocrinology - and the treatment of patients to me is the biggest medical scandal this country has ever seen.

You’re right. It has to change. I know it’s a scandal. And now my daughter, age 24, is also on levo. And I see her weight very slowly creeping up. If I can’t fight for me, I can damn well fight for her.

BrynGlas profile image
BrynGlas in reply to Juhu123

I saw a recent photo of my daughter too the other day and I am sure she is hypo, she has the puffiness around here eyes, is on anti depressants too. I am trying to get her to agree to a blood test if I pay for it for her.

She lives in Hertford and I am in North Wales, so we don't get to meet often.

Juhu123 profile image
Juhu123 in reply to BrynGlas

I hope she agrees to a blood test, and wish you both well. My daughter has confirmed Hashimoto’s, but she still believes our GP who says that T4 will help her. To be fair, T4 did work for me in the early days. It’s when T4 stops working that the NHS fail us all.

Hi, after much fighting and self advocacy I’ve been prescribed T3 on the NHS via my NHS Endo. It’s a 3 month trial which I’ve started this week.

It’s absolutely disgraceful how thyroid patients are treated and how we have to battle for our health.

Thanks for the petition link. Will sign.

Have you considered doing the DIO2 gene test through Regenerus Laboratories as promoted on here, as if positive this is a way of proving you need the T3. I did it and I am positive. My GP scanned the result onto my NHS file. I did a private 3 month trial of T3 plus Levothyroxine and it was a huge success. I now get T3 off the NHS but it wasn’t straight forward as my private only Endocrinologist had to step in to ensure I got it. NHS has prescribed it for me now for about 2 years. The NHS Endo threatend me that he’d stop prescribing if my TSH went suppressed. Luckily for me with 18 blood tests it’s only gone suppressed twice. I try to make sure I stay within ranges I do this by lowering my Levothyroxine dose very slightly snd not the T3 doses per day. So far so good. I also wrote to my MP Justin Madders on the situation. He has my back now and told me to let him know if my NHS Endo refuses the medication at any time. I got a letter back from Matt Hancock’s office this year with a load of rubbish in my opinion on the prescribing of Liothyronine.

I’ve signed the petition 👍

Hi there thanks for this - I have just phoned the lab I use in Guildford and they say they can't do this one - where did you get yours done?

I got it done through Regenerus Laboratories. It’s a sure way to find out if you are a poor converter of T4 Levothyroxine to active T3. Even though my blood results were saying I was only converting 8% to T3 the NHS refused even a trial of T3. I went private and within two consultations I was on a 3 month trial. Oh boy I cannot put into words how fast it worked and how good I now feel. It was definitely a light bulb moment when it came back positive. For 11 years I’d been really struggling just on Levothyroxine. Now I’m like a spring chick. I actually feel like I’m getting younger each day. A positive result may just be your turning point too.

Brilliant thanks for this - how much did it cost and did you need blood or other means of testing. No blood phials at the moment - you could not make it up.

It’s a saliva test so no worries on that. Weirdly my MP Justin Madders has just emailed me. He has read about the companies being fined and said he’s writing to the Health Secretary to see in the light of this will Liothyronine costs be reduced and will this have a positive effect in prescribing for those who need it. So that is a good start too.

Oh fantastic what a brilliant MP you have - wish mine was like that - he's a bit of a waste of space.

SlowDragon profile image
SlowDragonAdministrator in reply to posthinking01

Regenerus test

regeneruslabs.com/products/...

Testing positive can help get T3 on NHS

Sorry brain fog - I can see now where you got it done - apologies.

I am sorry you are having problems. You are quite right T3 is supposed to be available on the NHS in case of need.My story is that, following a total thyroidectomy in 2002 and after a few zombie months, I was prescribed Erfa thyroid and T3 on the NHS. The prescription for T3 was considered by an NHS England consultant in 2019 and continued. The prescription for Erfa thyroid was withdrawn by my GP surgery on April 6th 2020 and I was told I would have to take Levothyroxine. I have IBD which Levothyroxine exacerbates.

I have moved counties and asked my new GP to request continuation of Erfa thyroid from the North Lincolnshire CCG. After 18 months I have heard nothing and have been buying my own thyroid hormones as I do need them to stay alive! I requested a copy of the GP's letter to the CCG last week but it seems not to exist. Instead I have had a copy of a referral to Medefer sent by my new GP asking if I really need T3. Medefer is a private company employed to cut NHS waiting lists. Medefer claim they will contact each patient by phone or virtually, I heard nothing from them until I was told I should continue on Levothyroxine, which I dont take, and drop T3.

Needless to say I have told Medefer I want this so called consultation deleted from my record.

I am so disgusted by the treatment I have had from the NHS. I worked for the NHS as a clinical psychologist for many years and I feel I have been dumped.

posthinking01 profile image
posthinking01 in reply to Mtym

So sorry you feel so rotten as so many of us do - I had a call with an endo yesterday and as previously over many years I was so excited - but no even though I sent the long list of the thyroid deficiency symptoms fro Thyroid UK site and ticking over 100 of the symptoms I suffered prior to treatment with T4 - to show her how my bloods do not really represent as a thyroid problem. I felt so let down again - but then she said well if you want to buy T3 I will help you treat yourself. Disgusting.

posthinking01 profile image
posthinking01 in reply to Mtym

I actually had said to me many years ago - when presenting with so many thyroid deficiency symptoms - are you willing to let me die to prove a point - he said if need be yes !!! I had a sub clinical issue not picked up by blood tests with serious life threatening symptoms at the time - forcing me to go to Belgium to see Dr Hertoghe who immediately put me on Armour. I got a lot better and managed to go back to work.

I live in France and have no thyroid. My GP prescribes Cynomel for me every month. I only take a half every day. The cost for 30 tablets is 4.49 Euros It is made here. If this helps youcopy and show to whoever you want OK? By the way I am reinbursed 60% of this cost anyway.

Many thanks - envy you two things - you get your T3 and wishing you fully well and you are living in France - if I was younger I would have done the same.

posthinking01 if you're on Facebook, you could join ITT Improve Thyroid Treatment group who are actively fighting this T3 situation, alongside other thyroid groups including Thyroid UK and The Thyroid Trust. ITT also has template letters you can use to fight your own case, and to send to MPs, CCGs etc.

posthinking01 profile image
posthinking01 in reply to TaraJR

Brilliant will do thanks for the tip.

Oh, you sound like me in 2019! I agree with everything you say, but getting things to change is another story.

My first blood test for hypothyroid was in 1997, but I wasn't diagnosed until 1999.

I have never been well on Levo, was never referred to an Endo, but had lots of attempts to overdose or cut myself. Got the antidepressants, etc etc etc. Most of us can tell of their problems.

In 2019 I joined Thyroid uk because I had started to gain weight again and I decided to fight back this time. This Forum gave me back my sanity and the more I learned the more angry I got.

Last year I found and bought T3 for myself. My GP (I live in North Wales) told me that I was never to mention Tv3 to him ever again because it was an illegal drug and he would not help me to use it, or prescribe it, or even discuss it.

So I have had to go it alone. I am on T3 only now, which I find very reasonably priced and have never been able to get my head around the reason why the Government went along with this price hike on T3. I just can't get my head around it at all. Because I could easily get 100 tablets of T3 for £10!!!!! How was it possible that the NHS was paying almost £300 for the same thing?? I have no idea and it doesn't make sense to me.

Do I think that these huge fines will change anything for hypo patients? I do hope so, but it doesn't seem to be too likely.

GP's are just not taught about hypothyroid management, if you don't get along with Levo, which I have never done, then you are going to find it very difficult to have a life worth living in the UK.

Endocrinologists we can see on the NHS are often less than well trained in thyroid hormones and you are more than likely to be seen by an Endo who majored in Type 1 diabetes than in hypothyroid problems.

It isn't right, it isn't fair, but that is how it is unfortunately.

I asked my GP to refer me to an Endo who is a professor in a Cardiff University hospital. But once again he told me that he wasn't allowed to refer me to an Endo which isn't within the local Health Board area.

The fact is that most GP's are just not interested in helping those of us who can't get along with Levo. They think we are trouble makers and can't possibly know better than them.

The Internet has been cursed by many a GP I am certain, because we could find our own way of treating all sorts of health issues, including hypothyroid.

Blood tests on the NHS are usually only for testing TSH only, because this is what a GP was taught in Med School.

I had to demand to have my medical records printed out for me and it was quite a fight but I was successful in the end. Most records of blood tests simply say normal, or give the TSH only. I can't even find how much Levothyroxine l was taking at the time of any blood tests in my records. It is no wonder that I had to fight to have access to my records, the best medical record filing it definately isn't, no wonder they don't want us to see them.

Blood is taken, sent to the lab and my GP's have then had the offer of 'advice' from the lab if they don't know how to treat their patient.

Hypothyroid treatment by numbers!

You have to remember that even the lab staff are only taught the same as aGP, just that TSH is king! It doesn't really tell you anything when the only active hormone is T3. We need the whole gamit of thyroid hormones, but mostly we don't get them.

I struggled for years to find something that made me feel better and stopped me from gaining weight in a never ending steady way. But in the end I gave up because I was driving my family insane with my constant search for a way of sorting myself out finally.

Even good GP's - as far as hypothyroid goes - such as Dr Barry Peatfield had to save his own life, by resigning as a GP so that he could stop the constant negative feedback which he had, just because he knew how to get Thyroid patients well, but the hierarchy wouldn't let him treat patients correctly. He was hounded out.

There are others, John Lowe, Dr Skinner, I don't have a good memory so can't recall all names unfortunately.

But they all struggled to treat hypothyroid patients who couldn't get along with Levothyroxine. Because the NHS system knew better, though they didn't know anything at all.

I would love to help you in your efforts to bring Hypothyroid and the shocking way that hypo patients are treated to the fore.

I have wanted to March on the Commons for years, but I didn't know how to get it started.

If I can help you, I will.

Just one thing though. I am moving back to England and packing my house up as I speak, but contact details etc will stay the same.

PM me on here if I can help once I have moved please.

Brill thanks - will let everyone know which way it will go

I have been on T3 only for 13 years initially from endo but now all repeat prescriptions from G.P. despite moving counties over the last 10 years. I am always being told to reduce dose though. So in 2020 as I got hit with long covid and was housebound also worried about brexit supplies, I did just that. Guess what reducing fro 60mcgs to 40mcgs my TSH shot up to 14.5 and was very ill. I insisted that these got added to my notes ( checked on NHS app) it was there. Clearly without 60mcgs a day I get very ill indeed.A facebook group might be a better way to reach people to get petition signed which I have now done. I am worried as cuts to NHS means we may more of a battle to keep this drug. I have also bought supplies from Turkey in past in case mine ever gets stopped.

Signed, we must all sign this petition and bring this debilitating illness to the forefront of government my gp knows nothing about thyroid disease as many others also. We shouldn’t have to keep fighting for what we deserve. Thankyou for bringing this to the forums attention

I've signed the petition and I get T3 from turkey

Signed and reposted on Facebook...

Hi, I've had T3 for many years. After doing my research, because I felt so lethargic all the time and had read about T3 making a difference to some people, and sacking my narrow minded Endo who retired anyway, I was taken on by a new Endo who prescribed it straight away, making me fully aware of the dangers and it's volatility. It made a huge difference to me but sadly not to the extent that I could continue my fitness career. I am currently working in France and they don't have T3 here, full stop, so I get mine prescribed in the UK and sent over as I have paid into the system all my life. I feel it may be down to your GP surgery as I get mine from my GP no problem. I hope you re able to get it prescribed, if it works for you it makes a real difference and unless people have lived through the fog that is a Thyroid disorder, they have no idea what you have to put up with. As an aside, I also take a good quality Vit B complex double dose, you need check by having blood tests that this is right for you, but this works well for me.

Thanks for this - let's hope it will work for me.

Can I just ask why didn't it work for you.

I was on T 4 for many years and did not feel much better, hair loss with thin fragile remaining hair was my most devastating side effect, but feeling tired, and so on awful too. I eventually (after moving area) saw an endo, a lovely German professor who asked me to take a gene test to see whether I convert the T4 to active T3, not available on the NHS, I paid privetly for the test. I don't convert T4 to T3 very well at all and the test was proof. After much consideration and being told of the cost of T3 over and over I was supplied through my GP surgery. I reminded them it's the only medication I take and I will never waste it. Unlike so many pharmaceuticals in this country. My health has improved hugely and even my hair is better. I'm brighter and have my life back.It's an absolute travesty of corruption that people with thyroid problems are not properly helped in this country, an outage most are left without medication that will change their lives. Thyroid is vital for so many body functions. Not everyone is helped by T4 alone. Other countries do not have this terrible greed situation over such a vital medication.

I hope things can change, mine was a long difficult journey to better health.

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