I've been taking T3/T4 combination for over 3 years. T4 alone did very little to relieve my hypothyroid symptoms, but after 8 months of just T4, starting T3 resolved my symptoms almost overnight. At the time my GP wouldn't prescribe even though she acknowledged that other patients dervived benefit from it and self prescribed. So I have been buying my own T3 & monitor using private blood tests. I now can't afford to buy T3. I explained to my GP, & he said that I would need an NHS endocrinologist to assess my need before he was permitted to prescribe - a private endocrinologist's recommendation would not be acceptable !! So he referred me to the NHS endo. whom he says has prescribed T3 to other patients in the practice.
Unfortunately it is an 8 month wait for my appointment. My GP will not prescribe T3 in the interim as he says it is against practice policy & local guidance. I explained to him that if I stopped T3 my symptoms would return (severe brain fog, weight gain, exercise intolerance, poor sleep, heart irregularities, constipation, dry eye....etc etc - I'm sure many of you will be familiar) and that I would be in his surgery more often than ever. Essentially, by not prescribing he would make me unwell again. Surely it would be dangerous for me to just stop taking T3 suddenly? He agreed to refer me to the practice manager to discuss.....
My understanding is that GP's can use their clinical judgement to prescibe T3 in certain cases - is that true? What documents on guidance/national policy could I present to the Practice Manager/my GP to support my case?
Thanks for the help in advance !!
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muppetme
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he said that I would need an NHS endocrinologist to assess my need before he was permitted to prescribe - a private endocrinologist's recommendation would not be acceptable !!
That's correct, to get an NHS prescription the trial has to be initiated by an NHS endo.
My understanding is that GP's can use their clinical judgement to prescibe T3 in certain cases - is that true?
Not as far as I know. NHS endo initiates trial. At the end of the trial if endo considers you benefit and should stay on T3 then he instructs GP to take over prescribing.
How much T3 do you take? And what brand? I believe it's possible to buy Tiromel x 100 x 25mcg tablets for around the £20-£25ish mark.
What seems crazy to me is that I'm already on T3, so how can anyone initiate a trial? The trial in effect would be to see if I get ill again when they don't pescribe it sigh
I only need 16.25mcg split to 4 daily doses - so need 5mcg tablets Sigma Pharm
But they have to satisfy themselves so they take you back to a state where you are hypothyroid and see what your conversion is like. It's not ideal but it's the way they have to do it. The alternative is a private doctor or continue to self source.
I only need 16.25mcg split to 4 daily doses - so need 5mcg tablets Sigma Pharm
That's a very expensive way of buying T3. In your position I would trial Tiromel, cut the tablet and take 3/4 of a tablet = 18.75mcg. You might find it weaker than Sigma Pharm and that amount might suit you so you could take 3 x 1/4 tablets a day. Many members do well with Tiromel.
severe brain fog, weight gain, exercise intolerance, poor sleep, heart irregularities, constipation, dry eye.... I still had all these symptoms on T4 alone, and they got better when I started T3
if you've got a GP who has agreed to refer you an endo who they know has prescribed T3 for patients in your surgery , and your surgery has agreed to take over the costs of prescribing from that endo , and you only have to wait 8 months, not 18 months for the appointment .. then you have had an extremely good result from that consultation with your GP.
if you lived in a different post code where the CCG had different prescribing limitations for T3, the answer would be a flat "No , T3 is not allowed for any new patients" even if there was an endo in that region who did want to prescribe it on the NHS .
All CCG regions, (even those that do allow 'new' patients to have T3) have this same policy about "T3 initiated in the private sector " ie. they will not just take over the cost of the prescription until the need has been assessed/ agreed by 'one of their own'. and all CCG policies say the patient who started it privately should continue to / source and pay privately until this accepted NHS route has been followed.
And just finding an NHS endo who is willing to prescribe T3 at all is a huge hurdle. The majority of them won't agree its necessary under any circumstances.
it is ridiculous time consuming and damaging i agree , but it is what it is , and there's no way round it (at the moment) if you want the NHS to pay for it.
could you elaborate on ‘not interchangeable ‘ please. I have only tried Roma so far. I have an unused packet of Thybon henning. Are you suggesting I may get a different and possibly better outcome with the Thybon henning ?
I’m on 10 mcg (2 x5) and 125 Levo. Still wiped out in the evenings. I’m just back from seeing my endo who refused to increase the dose at present. He wants me to change the dose timings for the moment from 5am and 1pm to 7am and 2pm. I’m doubtful that will make enough difference.
Edited to add, back on topic, my GP has prescribed Roma on the back of my private endo’s recommendation. She said if I need a regular prescription she will need permission from the area prescribing board but she is not insisting on an nhs endo.
It may not seem fair but it is what we are up against....and it is madness.
We are dealing with is potentially a life saving medication but...
Despite campaigns to both Westminster and Holyrood hurdles still exist.
An endo must first decide if T3 is appropriate for the patient before it can be prescribed....whether right or wrong that decision holds!!
In any case I doubt an endo would prescribe T3 on the basis of blood tests while you are self medicating.
As someone who needs high dose T3-only in order to function I have to self source and self medicate so I understand your frustration.
You may be lucky enough to find an open minded endo, in however how many months time that may be, but frankly that is more in hope than in expectation.
Medics do not like T3, it can be difficult to medicate especially if higher doses are needed. Monitoring then becomes difficult and dose is very individual and has to be carried out by clinical evaluation rather than by blood tests. It takes time and experience....and there is a lot of scaremongering surrounding T3
None of that we have the power to change!
Suggest you write a post asking if members can offer sources of T3....may be cheaper than your current choice which seems quite expensive.
I think this is the latest Glos guidance. Like other ICB (used to be CCGs) they go to great lengths to intimate it's dangerous, then Glos goes on to say you should start on 10-20mcg every 8 hours. Crumbs, we wouldn't recommend starting on that much!
They also put costings in there, which are very out of date. They link to RMOC but don't follow their guidance properly. Both documents are July 2020 and one says review due in December 2022, but I doubt they'll be up to speed on that.
If you're on Facebook, join ITT Improve Thyroid Treatment group. We have template letters to send to endo, GP, ICB, PALS, MP etc detailing all national guidance and parliamentary statements on T3 which should be being followed.
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