Shared care agreement, should I worry?

[Ebx_design]

Hi all,

Having completed a T4 & T3 trial with great successes, my NHS endo is soon due to approach my local GP for a shared care agreement to enable me to collect my prescription from the surgery.

The surgery is in my home town, and it will be infinitely easier if this happens. Since, at the minute I travel to a hospital quite a bit further away where my NHS consultant is located.

My GP in the past has been very blunt and said they no nothing about thyroid conditions, and wiyhin reason, trusted my own research. They were the ones who agreed my referral in the first place. That was over a year ago now.

Anyway, now, having heard how tight it's getting on the NHS and the upward trend for deperscibing T3 I'm quite nervous about this change if / when it happens.

Is there anything I need to be mindful of / ask my endo to inform my GP of etc that will make this transition easier and protect me in the future from any unnecessary meddling? I'm assuming my GP will take up annual labs again... If they remember etc.

Curious to hear of any similar experiences of this transfer period and any pitfalls...

Many thanks, ebx

[Star13]

well done for getting this far but has your GP agreed to do a shared care agreement ? Do your local ICB allow them and will they allow funding for T3?

Sorry to sound a bit pessimistic but these are the issues that most of us have to overcome.

[Ebx_design in reply to Star13]

Not pessimistic - you're being realistic.

I'm in an area where it does happen atm - at least that's what my endo has said to me. (Calderdale, West Yorkshire).

[TiggerMe Ambassador]

I've been working under this arrangement for the last 18 months and though the Surgery acted pretty dumb about setting it up it has been working ok, you are still under the care of the Endo and they will instigate blood tests and any change of dose...

The only time I have an issue is that the surgery insists on annual TSH for their records 🤷‍♀️ and this always comes up low (as I'm on T3) so they instantly mess about with my prescription rather than reading my file, I demand they contact the Endo who then puts them straight and on we bimble... so that's the only down side but when you know this is going to happen you pre-empt it as they really shouldn't alter anything without the Endo's say so

Do I have any great faith in the system... no not really as the Surgery doesn't understand the need for T3 and it obviously costs a whole lot more than T4... initially they refused to dispense the correct T3&4 but for the last 6 months they have been as we had a bit of an issue with the fact that they refused to write the prescriptions correctly to name Vencamil and Roma T3 which made it impossible to get even a very helpful independent pharmacy to get the right things in

So... don't expect a smooth ride but then if you have got this far you know what it's like dealing with the NHS so just keep at it 🤗

[Ebx_design in reply to TiggerMe]

Hiya

This gives me some hope... I'm glad you stay under the endo too - I didn't know that or at least, the exact ins and outs of how it works.

I'm not confident that the pharmacy wont mess it up (I know this sounds bad, but they are kind of terrible here).

Can I ask, how long it took you to get the shared care agreement in place? I've been on a trial for over 6 months now. And it's OK, but my endo has capped it at 25mcg T3 (I'm currently taking a bit more than that tho).

Yep, I'm a bit worried about annual tests, and the suppressed T3 merry go round... So do you get your endo to test at the hospital? or does your GP do it (full panel?) and endo advises GP? This bit seems confusing.

Xx

[TiggerMe Ambassador in reply to Ebx_design]

GP's aren't trained in T3 so they shouldn't get involved and should always go by the Endo's instructions.... you just have to be prepared to remind them of this 🙄

It took about a month of them all faffing about, my Endo wrote to them to confirm what they should prescribe and then I just had to keep pressing them to read the email and set it up as a regular prescription, I've not spoken with a GP about my thyroid since, just send them a message when they try to interfere with my dose.

Endo sends out a test form direct to me and I can get the surgery to do the blood draw and even then it comes through just requesting TSH😳 though low TSH triggers a fT4 result which I keep mid range.... these results are sent straight to Endo. I go on my tests so I know where my fT3 is even if they don't! Tests I do for them are always timed to produce something they can't tamper with though my TSH has been 0.05 since starting T3 we seem to be over that argument 🙂

Seems odd your Endo putting a cap on T3 but then they are a funny bunch to deal with 🙃

[Ebx_design in reply to TiggerMe]

Hiya, when you say you go on your tests so you know where your FT3 is, do you mean you get private tests too to know this, or implying something else? Sorry, I didn't get that bit.

Yeah, my endo has been quite committed to saying 20mcg is a max amount they're willing to give out - although he's stretched to 25mcg atm, and I'm making up the rest. Not sure how to ask for more, because if he'd make it 30 for me, I'd be good with that. Hmm, tricky.

[TiggerMe Ambassador in reply to Ebx_design]

Yes, I get private tests done, as my levels have remained constant I have started taking them at various times after doses to build up a picture of how my body deals with it throughout the day.

You would like to think that if you are still symptomatic and there is room for an increase that keeps you within range your Endo would have the knowledge to up your dose?

[Sparklingsunshine]

This makes me mad, thyroid disorders are so common, especially hypo, Levo is one of the most commonly prescribed medications worldwide. GP's must see it all the time yet they act like its a disease that only two people since time immemorial have ever had.

Why dont they understand it, why dont they bother to read up and learn more about it, surely ongoing professional training and development is a requirement for doctors, as it is for many other careers.

However unlike other professions, doctors literally have the power of life and death over us, as well as a much reduced quality of life if they dont get it right. I dont know what's worse, doctors saying they dont understand it or pretending they do and coming out with complete hogwash.

Smacks of ignorance and buck passing to me. I hope all goes smoothly with your shared care and you get your T3 sorted out.

[Ebx_design in reply to Sparklingsunshine]

Thank you so much. And yeah it terrible. But at least my GP was ignorant and openly agreed he was, and sent me on my way. As opposed to those who don't know jot, but claim they do.

It's a massive mess - the whole system - hence my anxiety about it. I've worked so hard to get well again, and am terrified of it being taken away through lack of knowledge and understanding. I can't go back to that state again.

Thanks for your kind words.