Has anybody in Cambridgeshire managed to get ND... - Thyroid UK
Has anybody in Cambridgeshire managed to get NDT prescribed on the NHS?
It would be nice if there was one. I hope someone is able to reply, but this is from the British thyroid Association on Armour:-
british-thyroid-association...
Dr Lowe said that he doesn't know why they can make such false statements.
Endocrinology at Addenbrookes definately won't prescribe it. In fact when I was a patient there I was clearly told if I didn't switch to T4 they would refuse to treat me at all.
Thank you powderpuff.
I was a patient at Hinchingbrooke and then referred to Addenbrooke's last year where I am still a patient. Both hospitals refuse to prescribe NDT.
My GP wrote to the PCT who also refused.
All of them spewing the same old tired lies.
The lack of respect for my quality of life is heartbreaking.
I am devastated.
NHS's own statistics for England & Wales show that prescriptions for "Armour" have increased by more than 200% in the last couple of years so more than a few people are getting it on the NHS.
Private/black market is not an option for me.
Do you know on what ground the PCT had refused? Maybe you can contest it? Could you get a private prescription from your GP and buy from elsewhere where it is cheaper?
PCT told the same tired old lies; unlicensed, unsafe etc etc.
As I said private is not an option, I am on welfare benefits due to losing my job because of hypothyroidism and the treatment nightmare I have endured. ESA has been cut by £10per week (one weeks food per month!) to the point where I can no longer afford to live independently.
I understand your disappointment Hypoman.
Do you see one of the Professors? At least one of them is not adverse to combination T4/T3 therapy if that is any help to you. I was prescribed it but unfortunatly did not do at all well & now take a combo of T4/NDT which works beautifully for me.
I saw a doctor, not Professor Krishna Chatterjee.
I have been on synthetic T4/T3 combination treatment for 16 weeks now. After an initial "bounce" my health is again deteriorating albeit not to the depths experienced for 9+ years of T4 only hell.
I have educated myself as best I can in my current mental state and everything points to synthetic T4 being the problem.
Delighted to hear that you are enjoying improved health powderpuff, long may it continue, and thank you for taking the time to respond.
Hi Hypoman. Just curious, did you get your T3 dose small to start with and if so have you had any increases in T3 subsequently as your T4/T3 treatment progresses?
I'm curious as they put me on the lowest T3 dose of 5mcg, and I've seen a bit of improvement, hoping they might let it be increased at my 2 month checkin but not sure if they'll like T3 doses any higher - think they seem more in favour of increasing T4 based on previous comments.
Hello Hansaplatz, I was told to slowly build up to 20mcg as long as there was no negative reaction.
I now take 10mcg first thing, 5mcg early afternoon and 5mcg early evening. I take my T4 before bed. Most people dose T3 throughout the day (2, 3 even 4 times) because of it's short half-life (8 hours-ish).
I have read and researched that I should expect my TSH to be suppressed now that I am taking the active hormone T3. However my endo states that suppressed TSH is indicative of HYPERthyroidism (over-treatment... I KNOW) and would want to adjust my dosages, hopefully lower my T4 not T3, I am willing to do this as I realise I am fortunate to get any T3 at all and do not want to rock the boat... well not too much! 
I find it very difficult to strike the right balance of assertiveness and compliance with "healthcare professionals", when at the end of the day it is my health, and the last 9+ years have been hell.
Good luck on your journey.
I know this is an old post, but how are you getting on Hypoman? I've been referred to prof chatterjee, and he's diagnosed hashis and yet to start treatment. Are you still on both T4 and T3?
Best wishes
Doubtful you'd get it prescribed at Addenbrookes endocrinology at least. If you are lucky you might be able to make a case there for combined T4/T3, but from the sound of it at my appointment they were not T3 only friendly there and I wouldn't have thought NDT would be on the cards for combined T4/T3, I suspect synthetic only is their preference.
But maybe somewhere in Cambridgeshire there's a GP willing to subscribe NDT. Your best bet, if you don't find anyone here replying, would to ask at pharmacies to see if you can find anyone who got a prescription filled (not who, just if the pharmacy has recently fulfilled one for NDT) and try to find out what practice is was from.
Hansaplatz; thank you for taking the time to respond.
Please see my above comment regarding T4/T3. The doctor at Addenbrooke's did mention that one patient is on T3 only.
Thank you for the tip regarding tracking down the mythical GP who prescribes NDT medicine that will possibly help to heal me.
Intersesting they mentioned one person on T3 only, as at my last appointment I got told T3 only (when being talked about generally, not specifically for me) wasn't something they believed in. So I wonder what led to that one person getting T3 if they generally don't think it is good to do.
The mind boggles.
A GP locum persuaded me to "see the professor" at Addenbrookes to discuss alternatives to T4 which clearly wasn't working for me. When I arrived there were about 100 people waiting (not all patients) and I was told by a nurse that "the professor" was busy and I may not be able to see him.
I was called to a store room containing two chairs, by a junior who at least apologied for the room and proceeded to tell me that I would be treated only with T4 because "we don't do T3 or anything else". The suggestion was that I stop taking all medication and see what happens. If I didn't do this they would not treat me. I had no intention of doing any such thing, so I refused and I have never gone back.
I am lucky enough to see Dr Skinner who prescribes a mix of NDT and T4 for me.
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