I have a question which I hope you can answer. As you’ll know my journey has been quite bumpy and this forum has made a huge difference to my health. I have been self medicating t3 for quite a while due to my local endo saying it’s blacklisted in my area. Through my treatment I was referred to a specialist endo out of my area. He agreed t3 made a huge difference to my health and prescribes it to his patients. He couldn’t do my prescription as I am out of his area. So, he wrote to my local endo and asked him to provide a prescription. He refused again. I am now part of the postcode lottery for medication. My GP is useless and doesn’t know what to do. Can you help direct me in how I can fight back?
Thanks again to this amazing forum x
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Have you received an explanation of your local endo's rationale for refusal?
If so, the contents of that might provide some basis for argument/justification. For example, based on out of date information, lacks recognition of some details of your case, etc.
If not, I think it is entirely reasonable to request, even demand, to know the rationale.
Obviously, you have to avoid antagonising him (maybe, antagonising him further?) but, at heart, you are entitled to know why.
TaraJR i'd contact ITT (Improve Thyroid Treatment) Efm2022 , they successfully campaign about lack of access to T3 on NHS, they have various useful resources , template letters etc , can probably help you find the exact details of each areas' policy etc . i think they are only on facebook , but i've tagged TaraJr for you , she's on here and works with them .
i think they were looking for people who have been refused T3 in the last 12 mths .
this post is from a couple of yrs ago, (about T3 prescribing policy review in Lancashire and South Cumbria Medicines Management Group ~which includes Preston i believe) ,
prescribing T3 for 'new patients' was previously not allowed/ under review , but policy review a couple of yrs ago means it now is allowed for new patients.
however i'm not sure what /if any difference it makes that CCG's have now changed into ICB's.
Humphre is in east lancs (also part of this area) and has been told no, despite the area in general clearly now allowing trials of T3 for 'new patients' , but east lanc endo's were clearly against allowing it as seen the minutes for these meetings , and they seem to be being allowed to ignore the policy for the whole area and do their own thing, so i can't get my head round what that means to be honest.
i haven't tried to get it on NHS, so can't offer any direct experience.
Tatty, is this the right information and if so, are you able to understand? It seems a bit ambiguous to me.. but I don't understand anything with my brain lancashireandsouthcumbriafo...
(basically says it must be initiated ( trial) by endo , but following that , it can then be prescribed by GP if GP agrees to take on prescribing)
Liothyronine ~ "Amber 0 " ~ "Add-on treatment for refractory hypothyroidism despite adequate replacement with levothyroxine – new patients (RED RAG for Pennine only for this indication)"
(RAG codes key ~ "Amber level 0: Suitable for prescribing in primary care following recommendation or initiation by a specialist. Little or no specific monitoring required. Patient may need a regular review, but this would not exceed that required for other medicines routinely prescribed in primary care. Brief prescribing document or information sheet may be required. Primary care prescribers must be familiar with the drug to take on prescribing responsibility or must get the required information. When recommending or handing over care, specialists should ask primary care prescribers to take over prescribing responsibility, and should give enough information about the indication, dose, monitoring requirements, use outside product licence and any necessary dose adjustments to allow them to confidently prescribe " )
note: the bit about 'RED RAG for Pennine only ' i'm assuming 'Pennine' means the east lancs sub district that Humphre is in ? and this is why they are refusing it to her . RED code here is basically 'brief hospital use only' ie in intensive care , or briefly for a few wks as part of thyroid cancer treatment to prepare for RAI.
yes , that document says it's allowed to be prescribed in Preston and everywhere else in Lancs and South Cumbria except for 'Pennine' (i have no idea the precise part of this area that 'pennine' covers. other than i suspect it's the bit of east lancs where humphre lives)
~it's not allowed for hypothyroidism unless it's "refractory despite adequate replacement dose of levo" (which is of course open to interpretation by their endo's)
~ it's not allowed for the purpose of treating treatment resistant depression /
~GP's are not allowed to take over prescribing if it was started by a private endo, the patient must first be seen by NHS endo for NHS trial , and if that is successful then GP is allowed to continue prescribing .
If you come under Lancashire and South Cumbria Formulary, I think I've found the information. I'm a bit confused as how to read it correctly. Hopefully someone knowledgeable will help
Through my treatment I was referred to a specialist endo out of my area. He agreed t3 made a huge difference to my health and prescribes it to his patients. He couldn’t do my prescription as I am out of his area. So, he wrote to my local endo and asked him to provide a prescription. He refused again
Did you see both these Endocrinologists via NHS
If they are ..
I don’t see why first endocrinologist can’t initiate prescriptions and after 3 months trial via hospital then endo can write to your GP and request GP take over care and cost of prescription with annual referral back to endo
yes I saw Preston first then was referred to Chorley who then referred me to Manchester to someone who specialised in this condition as opposed to diabetes. The one at Preston said absolutely not which is why I went about it myself via this fabulous forum. I’ve then been fighting my case with my results as evidence. I’m hoping if I keep pushing they won’t be able to ignore me.
Thank you to everyone who has commented. I will update you on my progress x
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