Evidence in numbers, of people managing they’re health on T3 or combination T3& levo As my GP: says not enough evidence london & sth east

[Nilly-batu16]

As prescribed T3 in combi with levo from nhs hosp, yrs ago, endo doc left went private, i followed as patient, as hosp endo nhs, would not supply: since these yrs, now i ask my GP, can i have T3 combi:: No knowone can have, even if long standing on this::As GP practice in writing, sais: Not enough evidence, that peoples health has improved & feel managed: in london & sth east england… Is there a record of numbers of people, managing, & well on T3 or combined,as wish to reply to my letter::

[SlowDragon Administrator]

Print this out to give your GP

58,000 prescriptions for T3 in England in last year

Typically that’s 6 prescriptions per person per year

openprescribing.net/analyse...

To get T3 prescribed on NHS you need to see NHS thyroid specialist endocrinologist

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

[e-mail]

[Nilly-batu16 in reply to SlowDragon]

Thnku, for info printing done!

[Thicket]

I get mine via a endo and my GP has just taken over prescribing. I’m in the South West.

[Nilly-batu16 in reply to Thicket]

I had it from endo nhs yrs ago, but endo went private, nhs new endo, would not give, so went back to original endo, which went private hosp:

[Thicket]

God I really despair! I found it easy but I have a very supportive GP. ( who is my age) The endocrinologist was ok but again I had to be very vocal.

[Nilly-batu16 in reply to Thicket]

Yes i have been vocal, with my GP, & sending info: they were so adamant, that (they) would recommend a new Nhs Endo - but i can assure you knowone in london or sth east, will get T3, even if ( like me ) are long standing-that would only subscribe levo - mortified i was reading the letter, which, Now i will reply:: thnku

[Hypopotamus]

I used to get it, and NDT, but my NHS endo has told me categorically that he is not now allowed to prescribe anything but thyroxine.

The real reason that they do not want to prescribe T3 is cost, because the NHS pays well over the 'proper' price for what they buy, The embarrassed/frustrated/don't care as long as the blood tests are OK medical profession then tell the patient that T3 doesn't work, or it will damage the heart, thin the bones, or make your ears fall off.

I don't know how it would be organised, but what we need is a book of sworn testimonies from those using T3/NDT that anybody could use as evidence that some of us require something more than thyroxine. However, even faced with such evidence, most NHS doctors will just revert to reason that it costs too much.

[Nilly-batu16 in reply to Hypopotamus]

All down to £’s - which we all know. “A Good suggestion of A Book with names, should Be” thnku Hypopotamus

[shaws Administrator in reply to Hypopotamus]

Considering that before 1892 hypothyroid patients had a horrible death.

Since 1892 when NDT (natural dessicated thyroid hormones) was invented and then saved lives without the need of blood tests but going by the patients' symptoms alone.

It puzzles me that the BTA (British Thyroid Association) - supposed to be educated and knowledgeable associates - withdrew NDTs altogether for sometime now. The decision left those patients whose health was good on it, shocked and stranded.

No decisions took account of patients' health and wellbeing at all.

No account seems to have been made of whether or not the patient may lose their livelihoods due to the decisions made by 'supposed to be experts'.

I think that patients on this forum become the 'experts' due to their non-diagnosis or still unwell and searching the internet for help/assistance.

[Nilly-batu16 in reply to shaws]

Thnku,

[Thicket]

Yes I comes down to cost! I get the new T3(Roma) And yes he told me about the risks🤣🤣🤣. I told him I’m happy to take them. Ask to be referred somewhere else.

[shaws Administrator in reply to Thicket]

Is Roma in a 'capsule' or a 'tablet form?

[Thicket in reply to shaws]

I am picking it up from the pharmacy tonight. I will report back when I have them in my hand🤣

[Thicket in reply to shaws]

It’s the hard capsules! Pharmacy said it was very hard to get hold of.

[shaws Administrator in reply to Thicket]

I had a conversation with the pharmacist a few days ago and I've been with him a long time (I take T3 only) and I had mentioned previously about Roma but he told me that he couldn't prescribe capsule - only tablets. So I assumed he was telling me that Roma was a capsule.

[Thicket in reply to shaws]

Its a small capsule. I have the 5 micrograms, so no need for me to split.

[shaws Administrator in reply to Thicket]

I've never split my T3 - I take it once daily when I awake with one glass of water and wait an hour before I have breakfast.

I follow Dr Lowe's advice and have recovered my health.

I am fortunate to have no symptoms and I am 'free to do as I want and go were I want'

Dr John Lowe was a scientist/researcher/expert in the use of T3. He was also an AdviserThyroiduk.a org.uk before his death caused by an accident - even though he was injured he still did his Research. He was also a doctor

The following is by Dr Lowe .

web.archive.org/web/2011030...

[mstp]

I thought they were prescribing t3 again since the drug company were fined millions for profiteering. Is that not the case?

[Hypopotamus in reply to mstp]

I have a consultation with my endo tomorrow so I will ask him. But according to the figures in the thread healthunlocked.com/thyroidu... the prices are still ridiculous compared to thyroxine.

[Nilly-batu16 in reply to Hypopotamus]

Well as a pensioner, i still have to pay for my prescription from endo, b4 utility bills: its disgraceful:

[Hypopotamus in reply to Nilly-batu16]

I'm only on a State pension too. And buy my own B12 injections. All I am getting from the NHS is a blood test when I ask for one - they can't even be bothered to make me regular appointments any more.

[Thicket in reply to Hypopotamus]

Good luck. It’s a crap road to walk.

[Nilly-batu16 in reply to mstp]

Not in my GP practice, or Borough, although it has gone down in price: “Oh i haven’t finished with em yet” Even more determined, not for just myself- for all who need & are well on it! Thnks

[jsra]

I've been happily on T4 T3 combination for about 20 years. It took 2-3 years before that to get to a point where I felt comfortable - but not fully well ever, having started on T4 only and just not improving. Initially TSH was too high to measure!

About 4 years ago I had a new GP with a bee in her bonnet and decided that my dose was too high and that I had to see an endocrinologist. That was good; the endocrinologist suggested my T3 dose was increased! I refused the increase. 2 years later the GP insisted I saw another endocrinologist. Because we were moving home, I asked for the endocrinologist in the new area - Berkshire. Without telling me, but telling my GP who has reduced my prescription, they have decreased both T4 and T3. I'm fighting.

[Nilly-batu16 in reply to jsra]

Good luck with that, this is the fight we have to do!!i am being referred to an nhs endo;again, if not successful, will still stay with private:: Had a hard battle even to see doc, “doc telephone call,& i was walking up to surgery,” sorry i am having face to face appointment”” Finally i may have got thru!! Who knows