I had my endo telephone appointment yesterday. Because of the blood test results she will not increase my dose, in fact she wanted to reduce it!Also my vits and mine blood test will be done next week, because the endo letter didn't get actioned until yesterday morning when I had a text message from the GP to book a blood test!.
I tried to disagree with her decision, explaining why, but I was swiftly told that she had studied for many years, and knew what she was doing, and that this forum was used by novices who have not studied and therefore didn't know as much as her!!! And she also quoted the trope about too much T3 can cause osteoporosis and heart damage. I also said that the jury's out because there are different opinions on treating hypothyroidism.
Should I self medicate do you think? At least to try to see if it helps.
Thank you for your input.
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DandyButch
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....that she had studied for many years, and knew what she was doing, and that this forum was used by novices who have not studied and therefore didn't know as much as her!!!
Did it never cross her mind that people who are not specifically medical students are equally ( or more ) able to study a subject
It sounds as if she was sitting at the bottom of her class in med school hugging a closed mind and swathed in arrogance.
I decided to self medicate after experiencing a similar attitude from both a GP and an endo....it's a steep learning curve but one that has possibly saved my life.
My body was slowly shutting down... and needs a supraphysiological dose of T3 to function.
Those who " had studied for many years" thought I would kill myself!
It was the knowledge and experience of a few members here, a number of years ago, that gave me the courage to walk away from NHS treatment for thyroid disease.
I'm sure I owe my life to those scathingly referred to by your GP as "novices".....they proved to be the true experts.
Hi again DippyDame,Thank you for replying, I really appreciate hearing from you because of your own journey and subsequent success. I was not impressed by her dismissal of the learned knowledge of all the people on here, who back up their cases with papers and facts.
Surely if you've been there, done that, you have first hand knowledge of the problem within the NHS and their inadequate diagnoses.
Was this an NHS Endo Dandy? I agree with both Dippy and Greygoose, her ego is bigger than her knowledge. I doubt she will make you well. We have something that trumps all her years of study, personal experience.
Unless she has ever had a thyroid problem she cant possibly know how it feels. You know your body, afterall you've lived in it for 64 years 😊. Unlike her we have a vested interest in our treatment and in becoming as well as possible.
You're just another patient and at the end of the day she will walk away and get on with her day but her decisions will have a profound effect on your quality of life.
You wonder how these types get into responsible posts. A GP's lack of in-depth knowledge may be understandable but an endo is expected to have specialist knowledge. As we know that's why GPs refer patients to them....for life improving and life saving treatment!!
GPs refer to endos because endos have taken all the power away from GPs. This is so they can consistently say that GPs don’t have a clue. Like a bunch of sheep, GPs have been happy to let endos do this, as presumably, they saw this stupid arrangement would make life easier for the GP. I wonder how they feel that is working out for them? There was a piece of truly dreadful research headed up by one Simon Pearce making medics (other than endos) out to be very ignorant of thyroid issues and how to treat them. I often wonder how much clout this had in removing thyroid issues from GPs. In other ‘businesses’ training would have been the main outcome of such a ‘finding’. No, the decision was to give GPs no such opportunities. Just remove the major decision making away from them. Thus underskilling them even more!
I was taken aback recently in an attempt to get an NHS referral. After explaining that I have a heart problem and my own research makes many connections between thyroid status and heart problems; I was asked but what was she going to put on the referral request?? I was momentarily (thankfully) put on my back foot. Then I realised she was on a completely different page. I was then able to trot out all the ‘classic’ symptoms of thyroid I have never managed to improve on. She just wanted the usual refrain. No improvement on the basics. No wonder there are so many ‘built in’ refusals by endos to see patients face to face.
Sometimes it’s the simple stuff they need to hear. They have no conception of the depths of this illness. It’s all the superficial stuff they are aware of. They don’t ‘get’ anything beyond the list on the NHS website. Their knowledge is truly over simplistic.
Again patients have to aware of their knowledge being not only superior to the GP but also of the endo. It’s not just that endos don’t like that - it’s that they don’t have the ability to conceive that the ‘dull’ patient could possibly have something important to discuss and that simply titrate the levo is the answer and that is their reply. Why bother trying to remove all the business in the first place from GPs when their advice is also simple? It’s just a very thinly disguised attempt to show their (unfounded) superiority.
It’s a circular procedure and (so far) therefore a sign of utter insanity in its construction.
As I've said many times here.... if I had continued to rely on medics to diagnose my complicated thyroid problem I would in all probability now be dead!
And I can guarantee my cause of death would not have been recorded as, "Triiodothyronine, cellular deficiency"!
I absolutely agree with you. "They have no conception of the depths of this illness".
I was told by a patronising GP, 25 years ago, that, " This little white pill, taken daily for life, is all you need to feel well again".
She has long gone, but those false words of reassurance still stick in my craw.
I'm convinced that the remaining ptoms and consequent damage in my body, are the result of long term/ a lifetime of untreated T3 deficiency....which are now (almost) beyond repair despite supraphysiological doses of T3.
We will never know how many have lived, suffered and died with undiagnosed T3 deficiency.
Instead of ignoring the vital importance of T3, the naysayers must pull their heads out of the sand, admit they have been wrong for decades, take cognisance of available research and go back to the beginning....patients lives and well being depend on this seismic shift.
And the worst of it is, she's not a GP, she's an endo! Wow! What an ego! lol
Well, it was pretty much the same for me. Different numbers but same attitude. We couldn't possibly know what we're talking about because we haven't been to med school. And a fat lot of good it does most doctors going to med school when it comes to thyroid! Never occurs to them that things have moved on since the left school, more research has been done, new things discovered, and that they are living in the past. If you say anything like that to them they say, oh, I haven't got time to keep up with it all! Well, in that case, you shouldn't be treating me then, should you! So, I decided to treat myself.
I don't doubt that 'too much' T3 causes heart and bone problems - along with many others - but the question is: how much is too much? And I very much doubt that 40 mcg is too much. Your FT3 isn't even over-range. I very much doubt that she knows what she's doing and is trying to cover that up with bluster and hot air. I wouldn't trust her as far as I could throw her - and that would not be very far!
Actually, she is already the second Endo I have seen at my local hospital. The first one was worse.She did ask if I wanted a second opinion, but I declined. I'd probably end up with the first one!!!! Plus all NHS are drip fed group think.
The thing is, hypothyroidism is classed as a chronic illness which can be fatal if left untreated. Why, therefore, is it not considered serious enough to listen to patient's symptoms, but, instead, shut you down.
Best they can do, which is next to useless, and if they tried to treat patient's properly, which they consider 'harmful', surely not treating patient's properly is just as harmful?????
I think it takes a special type of person to be an endo - not the sort of person anyone would actually like, and not the sort of person that wants to help, but the sort of person who is so full of their own self-importance they really don't care if they're talking rubbish as long as they get to talk - they're not there to listen of help, just to let all that hot air they generate through their burning admiration of their own selves, escape through their various orifices to show how clever they are.
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