GP and Endo will be cancelling my T3 prescription Help

[foggy50361]

Hi guys/gals,

My GP will be no longer renewing my Liothyronine meds after being on them for 2 1/2 years and feeling like my normal self and I’ll just be getting Levo. (No evidence that it does anything BS). I’m looking to buy myself and am asking for PM’s for reliable sources.

TAI

Marc

[SlowDragon Administrator]

The guidelines say that if doing well on T3 it should not be stopped

british-thyroid-association...

Print out and give copy in writing to GP and endo

Also some more info on Facebook page of Improve Thyroid Treatment campaign group.

Letter templates and other facts to include

Clutter has some other links

[shaws Administrator in reply to SlowDragon]

I gave my GP a copy of the BTA 's info and he scoffed - "The BTA" so the GPs obviously have to take their guidelines from elsewhere.

[Clutter]

Foggy50361,

If T3 was prescribed by an NHS endo I would write to your GP (cc your MP) and say you believe your GP is in breach of GMS contract by withdrawing treatment you have been told you need. Say you have been well on Liothyronine and wish to continue taking it. Attach the BTA guidance for patients and GPs.

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

CCGs are expected to do impact consultations with the public and stakeholders before implementing change. Failure to do so leaves them open to legal challenge so check whether your CCG did an impact consultation before advising your GP to withdraw T3.

mills-reeve.com/files/Publi...

[foggy50361 in reply to Clutter]

The T3 was prescribed by a private Endo, I completely lost it with one of the doctors in my surgery. From 2011 till 2015 I was only on Levo and although I felt better than not being on anything I returned to my surgery to explain that I was still suffering the usual symptoms badly the worst of which was weight increased up to nearly 24 stone and I'm 5'9" when I was only consuming around 1000 calories a day. Because I couldn't take any more of the doctor sending me for THS tests ( "Your levels are fine") and diabetes tests (No issues there either), in 2015 I completely lost it and told the surgery that if they were not concerned about my health that I'd take matters into my own hands and booked an appointment with a private Endo myself. He put me on Lio and within a week I started to feel like my old self also dropped weight to 16.5 stone and its been stable ever since.

I'm going to try and find out if the private Endo that put my on Lio also sees NHS patients and ask my surgery to put me on his waiting list. The most infuriating thing is my NHS endo appointment set up by my surgery ins't until the middle of march but I've already been told by my surgery that the NHS Endo will not be continuing my Lio prescription.

[Clutter in reply to foggy50361]

Foggy50361,

I would complain to the hospital, BTA, your MP,your practice, the CCG and anyone else you can think of. The point of sending you to see a NHS endo is to ascertain whether you have a clinical need for T3. It's not supposed to be pre-determined box ticking exercise to get the practice or CCG of the hook. Why waste your time and the endo's time?

[McMurtagh]

I had a letter from my GP to say that he wanted me to see an Endo at the local hospital. There was an additional comment to the effect that my T3 was doing me harm even if I wasn’t aware of it!

I’ve been on T3 only for about 20 years and I have no symptoms of over-replacement and my BP is really good.

Is this scare mongering or is there new evidence that T3 causes harm?

[eeng]

It's scaremongering. A flawed study once suggested that having a suppressed TSH predisposed people to atrial fibrillation and bone thinning, however the study was shown to be flawed. Doctors however still believe that a below-range TSH is terribly unhealthy so don't like people taking NDT or T3 which suppress your TSH.

[TaraJR in reply to eeng]

Do you know which study that was, and how we can show it was flawed? That'd be brilliant evidence for my endo too

[muirfoot107]

I was on Levo/Lio combination but I’m now self medicating on NDT/Nature-Throid, I can privately send you details of where I buy that from if you like. Not cheap and I do feel pretty alone being responsible for my own care, but I feel great so hey ho!

[Stourie]

Hi reallyfedup123 do you know if it is the same in Scotland and they're not allowed to stop t3. I think that my doctor is about to stop my t3 as my tsh was 0.01 but it has sat there for about 4 years but the doctor who I used to see has now retired. I am rather worried as the last time I was due to have my repeat done a week later it wasn't and I had to go to reception and tell the doctor that they couldn't leave me with none. She came back with the prescription but clearly WAS NOT HAPPY. She practically threw it at me and just glowered and told me to get bloods done. Jo xx

[SlowDragon Administrator in reply to Stourie]

Recent debate in Scottish parliament about T3

scottishparliament.tv/meeti...

Might give you some info on who to see or contact

[Hillwoman in reply to Stourie]

Do have a look at the Scot Parlt debate SlowDragon has linked to - I'm pretty sure the minister speaking at the end said that patients doing well on current T3 meds should not have it withdrawn.

[lynmynott Partner Thyroid UK]

Is it feasible for you to see a different NHS endo? We have a list but it will probably mean travelling.

[foggy50361 in reply to lynmynott]

That's the wonderful thing, I booked an appointment with a private Endo through shear frustration with my surgery not caring about my issues. he prescribed me Lio in Feb 2016 (I've been on a combo mix ever since). Now my practice is sending me to a NHS Endo and before speaking to me, he's going to cancel my script. I've thought about asking for my practice to send me back to the Endo who originally prescribed under the NHS not private me but he works for a different health board, I'm lead to believe that because of this I can't be referred to him as he's from another Health board

[lynmynott Partner Thyroid UK in reply to foggy50361]

I'm afraid I don't know how the Health Boards work. I know here you can ask to be referred to any other specialist.

[foggy50361]

Battle number one, so far so good. Spoke to my doctor today after dropping a letter to her and the practice manager regarding how the practice has mislead me around the licensing of Lio and how I've benefited and feel better on Lio/Levo combo etc. and now my doctor is trying to support me and I've had my script renewed but only until I see the Endo which is the middle of March.

But as the Endo has already indicated that he will not ok Lio, I have already asked for a second opinion. Battle number 2 will commence.

Thank you everyone who's helped.

Foggy