It’s getting more difficult to get prescriptions for T3

[Lovecake]

Hi all

I’m needing a repeat prescription for my T3 that I get via private endo. Usually I message his secretary and she sorts. I would send them my NHS blood results approx once a year and speak/zoom call the endo every now and then. More often if there was a change in my results/a need to talk.

But now I’m being told I have to have bloods taken twice a year, they won’t do a repeat without them and I have to see the endo every 12 months.

The email reply I got when I said I wasn’t told about the new rules - plus I’d get a home fingerprick test done asap (I had put it off due to the strikes as the post was dire where I live)……

“I don't think you do T3 on a finger prick?  Its from a medicolegal standing now, patients need to have thyroid function tests done within the last 12 weeks to prescribe and the consultant must see the patient at least yearly. ”

I obviously confirmed I’d been getting FT3 done for over 4 years now (even though I’m struggling to get the blood out and hurting my fingertips) and mentioned Thyroid UK too. (Endo is on their T3 friendly list)

I don’t want to get my meds without an endo, but this is just getting more and more difficult and costly. I also think it’s strange having this rule for the endo. I bet an NHS endo doesn’t see someone “at least yearly” and many people wait over a year to get bloods done at their docs just for levothyroxine.

So I will get my blood done next week as I have a kit here. Then I’ll book my appointment and have a chat with the endo. And that will include “your TSH is too low” discussion again (it’s been 0.03 or lower for a long time). My FT4 is usually no more than 50% through range and FT3 around 85%

So I’d be interested if anyone else has now been told about the “medicolegal” reason for having more blood tests and more consultations. I’m sure I can speak to the endo ok, but I really feel it’s a waste of money if nothing has changed and the results are the same 🤷‍♀️

[mountainice]

Yes, I too was told that, and I think by the same private endo as yourself. It was when I went to renew my prescription that they said I needed a Zoom consultation yearly for medico-legal reasons - the very same as you. I had the call and got the 'too low TSH' conversation and now he wants me to repeat bloods in 6 weeks (as I changed the way I took my T3 - splitting it morning and afternoon - to hopefully raise TSH) and then a further consultation at 8 weeks, but I don't want to pay more money, so I hope I can email. He has already written to my GP saying about heart and bones, which contradicts a previous latter to the GP saying that the patient (me) is willing to take responsibility, but I suppose we have to do this dance e-v-e-r-y s-i-n-g-l-e t-i-m-e.

[Lovecake in reply to mountainice]

Thank you for replying.

When I first went on T3 (with this endo), a GP from my surgery sent him a letter (I only got to see his reply) about me having heart issues. He told her that in his specialist opinion the T3 I was taking would not cause me heart problems. 🤷‍♀️

I don’t think the governing bodies that send out the rules to these “specialists” know one end of a thyroid from another 🙄

[Jaydee1507 Administrator]

I'm only about 4 months in to private T3 prescriptions. At my first appointment with the private Endo he said he would require an annual blood test once I had settled on the correct dose, obviously more frequently when adjusting dose. He generally wouldn't need to see me in person other than the first appointment but could do Zoom calls as and when which are a bit cheaper. Generally he would be unlikely to need to see me. He did add a rider though that he reserved the right to call me in or ask for bloods whenever he chooses to.

I've recently asked for a repeat prescription and not been given any new advice about new regulations although I provided blood results due to needing a dose increase. It is their medical licence and they do need to be accountable. Some Endo's might be more 'twitchy' than others and feel they need to see you more frequently I'm guessing.

[Lovecake in reply to Jaydee1507]

Hi

Yes, I understand your points. As I am someone who seems to need a rather low TSH on levo only to function (and not very well), I don’t stand a chance with the TSH now I’m on T3 too. It was 0.05 when I first took 10mcg T3 and gradually dropped to 0.03

Some people can have similar FT4 and FT3 results to me and their TSH is at least 10% higher so they don’t get the stressing from the consultants.

I’m going to just have to do the blood tests more often. Trouble is, I’m finding it more difficult to do the fingerprick tests and really don’t want to be trudging around getting bloods taken. It’s hard enough getting up in the mornings as it is.

[Jaydee1507 Administrator]

I'm the same as you with the finger prick blood tests, cannot get enough blood last time I tried so having to pay the extra price for Medichecks + £30 for the blood draw! Hopefully in time my tissues will have recovered enough for me to be able to actually do the cheaper finger prick tests.

Some consultants are more tricky with TSH than others I think. It's awful when you're not even properly replaced on private T3, not good at all.

I'm not at optimal yet, but when I get there and if things get tricky I probably would go it alone. From what I've seen though it's quite expensive, more so than the Thybon-Henning I can get on private prescription, also you wouldn't be sure what you are getting was good.

[Lovecake in reply to Jaydee1507]

I’m on Thybon too. I don’t want to change brands. I don’t do well on different fillers. I still don’t see why the NHS can’t put Thybon on their list. It’s not like it’s from somewhere untrustworthy. And my great grandfather was German, so it’s in my DNA to have a german brand 😂

I’ll plod along and play their game and hopefully all will be well.

My endo said my GP should now prescribe my T3, but apart from not wanting to change brands, I don’t want to be another person who suddenly gets told they can no longer have it on the NHS. It would be like jumping out of the frying pan into the fire for sure.

[Jaydee1507 Administrator in reply to Lovecake]

Totally agreed about transferring to the NHS. They put up so many obstacles and move the goal posts so frequently I've already ruled that option out for myself.

If the Endo get's too sticky about things you could try a different one. There's even the option for pharmacy prescribing now. No clue how that works or what kind of sticklers they are but looked worth looking into.

[Lovecake in reply to Jaydee1507]

Thank you, yes, I’ve read that some people are able to get a consultation with a pharmacy. I think it’s the one that sends me Thybon. I’ll try that if I give up on the endo. Need to give them a bit longer and hope that they are ok