So
Had a TT in aug due to cancer
Rai in oct 18
Endo has explained I am not converting T4 to T3 very well and has given me a trial of T3
On week 4 now
Last bloods
TSH 1.01. Needs to be under 0.1
T4 19
T3 5.5
Endo sent a letter to gp to request they take over and give me the T3
Got a call today saying they will not issue
The CCG won’t allow it
What do I do now to get it on the NHS
Endo won’t give me it long term
Which CCG area ?
If an NHS secondary care doctor, (endo or psychiatrist ) says you have clinical need you should be prescribed.
Initial 3-6 months trial is via endo at hospital
Once trial has established you need T3 ongoing care and cost of prescribing should be taken over by GP, with annual review at endocrinologist
thyroidtrust.org/a-gp-write...
Hartlepool and Stockton-on-Tees
Very useful website giving data on T3 prescriptions by CCG area
Hartlepool
openprescribing.net/analyse...
Is your endocrinologist NHS?
Or Private?
If NHS you will likely need to apply for individual funding request via endocrinologist
NHS
Use version of this letter within this post by holyshedballs
Also go see your MP in face to face interview at MP surgery
Recent debates in parliament
theyworkforyou.com/search/?...
Contact PALS and also ring CCG and speak direct to some one
Worth watching
SCOTTISH PARLIAMENT
Print that letter out from GP
Give copy to your GP and request they honor your endocrinologists request for medication you have clinical need of
Yes that's a good letter - It originated from ITT Improve Thyroid Treatment, but The Thyroid Trust now have it prominently on their website, so you can print it off. The Thyroid Trust have another good leaflet thyroidtrust.org/uploads/3/...
It's great, very useful
One amendment needed....on the Guidance section the link goes to wrong page on BTA website
Should be this link
british-thyroid-association...
SlowDragon The link you suggest is the BTA response to the NHSE Consultation, rather than a BTA statement in itself. I assume that is why TTT chose that link.
That link is primarily to discuss patients having T3 stopped
None of those links mentions clearly that patients can still be referred to endocrinologist and can/should be offered trial of T3 and if successful, ongoing care and cost to be taken over by GP
The link I added, is not easy to find .....it's on home page ....just above image
A good point, I can contact TTT and ask them about it.
After a TT and RAI you have 2 options when your health deteriorates and you are referred from pillar to post to get a solution:
(1) Continue on your journey to get T3, speak to MP, apply for an individual funding request, complain to BTA, NHS,etc etc etc for many years to come whilst in the meanwhile continuing with bad health, having carpal tunnel syndrome, gaining much weight and perhaps even getting cancer as I did. Eventually giving up and becoming a permanent bedbound invalid. If you were by some miracle to get T3 it is more than likely that the combined T3/T4 treatment would still not work successfully.
(2) Start taking NDT, perhaps from Thailand, dump the levothyroxine and get your health back to the best it's ever going to be. Tell your GP exactly what you're doing and why, which is that levo does NOT work properly for anybody in your condition, just as it never did for me in pretty much exactly the same condition. The improvement in your health will give your renewed energy to continue with your efforts to get the proper treatment you SHOULD be receiving on the NHS. According to the rules of the GMC your doctor MUST give you all the information he is aware of as to drugs that could improve your health irrespective of whether he is allowed to prescribe them:
GENERAL MEDICAL COUNCIL: “CONSENT: PATIENTS AND DOCTORS MAKING DECISIONS TOGETHER. (9) YOU MUST give patients the information they want or need about (l) any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.”
He should also have told you of the significant possibility that you woul fail to get well on levo alone:
“COMMON LAW. RISK. Patients should be told of any possible significant adverse outcomes of a proposed treatment.”
I have approached the GMC about these seemingly excellent rules for doctors which very few of them seem to take any notice of and received the answer: "We don’t tell doctors what they must do in a particular situation". This is utterly pathetic and most typical of the sort of answer you would also receive if you too started to complain like me.
If you have a strong stomach, read up on the 2011 trial that your doctor is probably totally unaware of here :
ncbi.nlm.nih.gov/pmc/articl...
Excellent piece of research
Not seen that before
See also, from 2018:
Finally had a good day - I think T3 is starting to work!
Good source of t3
HELP PLEASE. I need good reasons on why my Endo should not pull the plug on my T3 treatment. 
Got my strange results back after 6 weeks of being on T3.
Is Low Reverse T3 good?
