I have to share this anecdote. It makes me laugh, cry and despair in equal measure.
After 8 crappy years with thyroid symptoms getting worse I put myself on T3 in November. On day 5 I woke up and said the words "I feel better" before my conscious had even engaged my brain. 4/5 months later I can sit up every night (writing this) rather than being comatose on the sofa or retired to bed early. Theres a heap of other benefits too.
The last 4 years I had been on Levo (had to push hard for that), but despite an initial uptick I just went downhill. I was trapped being on just enough levo for bloods to be in range and the clinical resistance to treating anything other than overt hypothyroidism.
Short story I gave it an intense 6 month push in 2024 with my GP to get to the bottom of it. She was willing and earnest but admitted she lacked tools and good no clinical guidelines to take it much further. Privately I had tried upping levo twice but really struggled with it .
After improvement and some deliberation I wrote to my GP, set out what I thought was a very good letter explaining my home trial and outcome and asking politely for her to seek endo guidance to meet or put me on a trial of T3 for a year or t4/t3 combination. She was game.
Endos reply on my patient record
- "sounds like he might have graves" (showing he had misread my letter or misunderstood my condition)
- " of course we do put some patients on t4/t3 combo therapy" (accepting it has value I assume?)
- "but not at the patient's demand!" - this was in brackets like a shakespearean aside
That was it, flat no and no offer to talk. GP felt very awkward I believe
But what I thing to admit. i keep muttering the line to myself 'not at the patient's demand' Ill get it put on my headstone.
M.
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CapnM
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The sheer arrogance. You don't want to see that one with that attitude. Ask for a different one. I did, and thank goodness I did, because my new one listens, although, once again, tied by NHS and NICE guidelines.
☹️ Awful!! You got a rotten one, should at least be willing to speak with you, don't be put off.... request the Endo list from Thyroid UK and choose the one you would like a referral too, sounds like your GP is at least aware of this route and would be willing to do their bit
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Prior to the pandemic, I was a volunteer medicines champion for our local CCG. The job was to go to meetings where the CCG tell you what is going to happen and we go about explaining it to anyone and everyone. For example if someone asks something here that is relevant to what is going on I would be able to explain it to them. "Not at the Patient's demand" was something they were very hot on. Doctors must not give in to what a patient demands and in fact they were going to be given training, to teach doctors how not to be bullied by their patients. Yes, they actually used the word bullied. I guess the moral to that story is to try and let the doctors think it was their decision to give you something rather than you demand it. I do not know how to do this, perhaps saying a lot of times to the GP "what do you think".
What I’d like to know is what they are defining as being “bullied”. Not thyroid related, but I’ve been the victim - and “victim” really is not too strong a word - of poor judgement/decision making on the part of a GP twice - both in relation to asthma. I went undiagnosed with the condition for five years as a small child because a GP refused to take on board everything my mother was telling him and medical evidence which supported an asthma diagnosis, and then twenty years later eventually ended up in hospital after a GP refused to acknowledge, despite everything I was telling him, that the inhaler I’d been placed on by a consultant was insufficient to control the condition (at the very least he should have referred me back to the consultant).
Being insistent that a doctor has not got it right is not “bullying”. It might be telling them something they’d rather not hear, but that is not “bullying”. Quite frankly if they haven’t been taught that they are as fallible as the rest of us and so can sometimes get things wrong there is something wrong with their training.
it’s a about time we were given real choices in treatment, and stopped being treated like children.
We ought to be able to DEMAND the treatment that suits us best, given that we and no other inhabit our own bodies. It’s called freedom of choice! Why are these arrogant know it alls trying to stop us from taking an active part in our recovery? I wish we could rid ourselves of these dreadful dinosaurs.
Where I live this is definitely the culture with thyroid issues. I am sure this is the experience for many patients.
Do you remember in the recent past (and even today) over the excessive use of antibiotics and their resistance building in the population. Many doctors were bullied by patients into prescribing them. This was along with being bullied into writing sick notes. So there are acknowledged incidents of this behaviour. Crikey advertising campaigns were bought and paid for to stamp out the behaviour. Just remember there are few people in our population who are able to legitimately write prescriptions or sick notes. Is this the patient’s fault or is it actually the prescribers fault?
However I think with thyroid patients it’s a bit more pathetic. It’s a case of maybe the bullied getting their own back on the weakest but complaining, patients. This might sound iffy but we do know that people who are ‘bullied’ themselves do often ‘act out’ similar behaviour when they can, to make up for their own perceived weaknesses.
That ‘little hitler’ type behaviour is particularly disgusting in our medical helpers. It’s abusive. It does them no favours at all. AND in the meantime we are left to either self help or rot.
Wonder if he is the same one my GP went to last year...he stated that the endo I saw at Wythenshawe had said stop taking T3, GP can help wean you off..Funny 'cos the endo I saw at Warrington, 20ish miles away from Wythenshawe, said I won't prescribe but if she feels better taking it, leave her alone.Very abrupt and clearly had not read my notes. Shouldn't be practicing half of them.
Going private was what worked for me. Once I had been stable and thriving on T3/T4 combination therapy for a year, the old GP and endo were more accepting and continued what someone else had begun because they had proof it worked (with no ill effects) and they weren’t having to do something on their own initiative—-something apparently so terrifyingly bold as to prescribe what has been proven to work. Lockstep cowards, they were. Good luck to you!
I thrived for over 20 years on T4/T3 (NHS endo prescribed.) They took the T3 off me because the price went up and for no clinical reason, so I buy my own. I'm still not back to how I was, after months of no/not enough T3. The problem now that the price has reduced a bit is that they denied price was a consideration when they took it away.
How do they suddenly say it's useful when they said it wasn't?
I'm glad you had a good outcome, keep up the fight
I had RAI treatment 12 years ago and gradually became very hypo and couldnt even get on levo for abour 2 years and when i did it made no difference and i kept feeling ill and gaining weight. I did research and got on this forum and started on thiroyd and gradually over the next few years felt better and was able to lose weight. I didnt inform my gp or endo but eventually came clean as i could no longer obtain thiroyd. They were not happy so i told them they gave me no choice as their levo didnt work for me and i felt good on thiroyd. They sort of offered me an ultimatum but knew they had a duty of care and told me they would start me on a 6 months trial of t3/t4 combo and if i continued to self medicate they would cease treating me. So i started the combo and then covid came along with no hospital appts so they just kept renewing my script. I then started seeing my endo at the hospital every year and told him how my life has changed and i feel like a normal person. Last visit i saw a consultant who was so nice and told me my bloods were good and i dont have to see him again for 2 years and am still on the combo
I've never demanded anything, I'm always polite and respectful, I go in ( on the fleetingly rare times I actually see a real human medic) with my symptoms and wait for them to suggest a treatment plan or further tests .
I may make suggestions or ask about a certain medication or therapy, but I always phrase it as a question, never an expectation. I've certainly never demanded they give it to me. I've never acted in an entitled fashion, been rude or aggressive.
I just wish I could say the same about all the health professionals I've seen 😒
Trust me I feel your pain. I too went through the gamut. Honestly I would laugh if if I wouldn't know better. But in all honesty thyroid journey is not a laughing matter. But it would be very helpful for all of us thyroid patients if Medical Academia would teach future Dr's to recognize patients symptoms over labs. And that T3 and T4 in many of us is the protocol. And in some T3 sole or T4 sole and in some NDT is what is needed. They should further teach Dr's to be open minded and to think out of the Box and respect what patients feel. Instead of laughing or crying we should be singing the Dr's praises for treating us the way we ought to. *Optimal *.
Hi CapnM, unbelievably in the U.S. we are barraged with advertisements telling patients to ask their doctors regarding certain drugs admitting long lists of possible side effects, including death. I don't think T3 has that reputation! Quite the opposite, It is a relevant hormone your body depends upon and tries to produce itself. To deprive it is malpractice in my opinion.
I hope you can convince females to be as vigorous. Ever since I began ordering my own T3 at least six years ago I have encouraged all who had this obstacle to do the same. Why let your body deteriorate when you have another option?
My GP, also amenable, referred me to endocrinology to explore Liothyronine after four years on various doses of Levothyroxine because of a pattern whereby either my TSH or my FT4 is elevated above reference range, and I’m left symptomatic. Private blood test results show low T3. Endo rejected referral saying if I’m on Levothyroxine my symptoms must be due to something unrelated to my hypothyroidism 🤦🏻♀️ He added, for good measure, there is a blanket ban on T3 prescribing in the county - also hogwash
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West Norfolk NHS GP useless for Hashimotos Thyroid Patients it seems!
