Saw my endocrinologist this afternoon, and took him some research papers that have come out since I last saw him (thanks to Diogenes for the links). Sadly, there was one he said I'd given him last time ie last August (even though it was only accepted for publication in December), and he glazed over when I gave him a one line summary of what each of the others showed.
He chose not to keep them to read, he just gave them back. He also gave back the result of my genetic test, showing that I have Dio2 polymorphism related to decreased conversion of T4 to T3 etc.. He wasn't interested in the gene as "there are other genes involved .....".
I said it was sad that the medical profession chooses to accept the results of poor research in the past where everyone was given 25mcg of T3 with a big drop in T4, and they concluded that it didn't work, and then they ignore good research done recently that shows different results.
He's a very likeable man, but totally unmoved by my stress and frustration due to the fact that no-one will prescribe T3, and I have to buy it from drug dealers on the internet. Also unmoved that I told him I am now taking antidepressants, and going for counselling, due to the stress caused by this situation. He happily and politely doesn't take responsibility for any of it. He explained at great length about the cost and the fact that this is why I can't have it. Not his problem then!!!
He did volunteer to write to the CCG to ask if I could be a special case, and get T3 prescribed, but I think we can all predict how that will go, especially as he doesn't actually think I need T3 (despite all my improvements while taking it), and he still wants me to take lower doses to raise my TSH.
SO FRUSTRATING!!!!! I feel that I have well and truly achieved a sense of "learned helplessness". NOTHING MAKES ANY DIFFERENCE!
So, rant over ...... SORRY!!!!
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dolphin5
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It is good to come on here and get rid of all your rage otherwise you might do something you regret to the Endo. It is all very well him being 'nice' but not at your expense when he will not read or want to expand his knowledge. He would have more patients then but maybe he is quite satisfied whilst patient is unsatisfied.
You have the option of resolving your own symptoms without him. In the meantime he may well be causing you to develop more symptoms.
I'd go it alone, although when a novice hypo I was nervous about going it alone but it is only hormones we are dealing with: ones we have too little of and we need to increase in order to relieve symptoms.
I am now well thanks to Thyroiduk.org.uk and we didn't have this forum which is a blessing to many sufferers worldwide.
I effect, I do go it alone, as I refuse to drop my T4, and I buy my own T3. So basically I control how much I take. The reason I keep seeing the endocrinologist is so that I can educate him. But I think next time I won't waste my printer ink. I'll just keep going to make sure he knows about the stress he helps to cause! If I disappear, I'll be helping him to think everything is fine.
Hi Clutter, my reply to you somehow ended up in the wrong place, thanks to the new Health Unlocked web page. The answer is "absolutely not". See below.
I can relate to your Rant! dophin5 ! my story regarding endo docs is similar along with your description of 'learned helplessness', etc is huge for me, too - and something i am glad you pointed out, cause it is like, to me, part of the problem with our medical systems - worldwide ! a big problem there, no doubt. (definitely part of a much bigger conversation, for sure.) ... ha, as for now ...
It takes courage and i think you are smart in staying in contact with the doc as that way you are pushing him to do a bit of documenting your experience, too. (maybe)
Seems to me Thyroid medical issues are very fluid at this time, meaning there is still so much to learn - for doctors, too! as you pointed out, too in your post dolphin ... a big ? is though - will doctors want to learn more ?
i have had similar doc experiences where there eyes glaze over and just dismiss what i have to say ...
hard for me to not take it personally and be negatively affected by that - which just adds to my anxiety and stress.
Also, i like your way of expressing the rage you feel here ! Thanks for your example - i appreciate it as i have a endo appt next week and may be back here with a similar response to what you shared dolphin ! (aargh)
all the best in your health work everyone n later, realeyes
The point is that I buy it without a prescription, from websites on the internet. I don't know who they are, or whether they will send a genuine product. The last batch was ordered from a site that looked as if it was a UK one, but it was posted to me from Romania. I want to be able to get it from a proper pharmacy with a prescription, ideally free on the NHS, and failing that, at a sensible price.
It would be illegal to sell T3 or NDT in the UK. I don't see that buying without a prescription means one is buying from a 'drug dealer'. Turkish pharmacies don't require a prescription for many meds which are prescription only in the UK.
The problem is finding websites that you can be sure are legitimate. The ones I've managed to find out about from other members have been good once, and the next time I went back they had no stock. So I seem to have to keep looking for new ones. I will eventually get a private prescription, and then I will have a better choice of websites.
What a mess! It's not exactly an optional drug - there should be more than one available to ensure a constant supply. Perhaps in about 30-50 years things will come good?
Problem is there isn't always more than one drug available for any condition. There have been shortages of some types of insulin, epilepsy and cancer drugs in the last couple of years.
That's where they go wrong - we all know that there are quite a few different types around. They need to be more flexible about where they buy it from. I've always used either Unipharma T3 or Tiromel. They must be the cheapest, but they work very well for me. I've read that some people have used the UK brand (the one that has been around for a while) as well as other brands, and they have found the other brands better.
I have had to write myself, lots of tiring work, trying CEO of hospital, PALS, NICE etc finally CCG, so yes, let them try for you!!! It’s exhausting!!!
I unlearned my helplessness, & have a sense of empowerment from treating myself. I have empty pockets, but not feeling like a cold slug is worth being broke.
I've not seen a single endocrinologist that knows what they're doing. My faith in the medical profession has all but vanished aside from my helpful podiatrist & a nurse at my pain management clinic who I trust to needle me safely,
My reason for getting some counselling is to unlearn the helplessness, and learn to feel that it's OK to have doctors who know less than I do about the condition they're treating me for etc etc etc ..........
That will never be an ok thing, i'm sure for any of the poorly people that end up here. It's the doctors that need counselling for their arrogance & dumb****ery, in tandem with retraining!
I've already switched to a new practice - with 16 GPs to work through. I've found a GP I really like. He says he's not allowed to prescribe T3, but he's happy to let the endocrinologist look after my thyroid issues, and unlike others in the past, he doesn't get unpleasant about me wanting to take T3. So I'm happy with him.
Hi. I'm sorry you have to even deal with a doctolike that. Nothing like a closed mind. So I guess we have to drive our own treatment. Fortunately we CAN do this and be successful. Good luck and take care. irina1975, PS I love dolphins too "silver dolphin" is a part of my email address. irina1975
I'm very sorry but not surprised that you have had that reception. It's a bold medic who dares to move away from the herd and act individually. Fear of sanctions is now uppermost in their minds. Knowledge now comes from on high, brooks no dissention, and is based on the beliefs of older, stultified minds who have difficulty in admitting they may have been wrong all along. An old saying: If you ring on a cracked bell often enough, it seems to be a beautiful sound. For me it's interesting that the more work we do, the stronger the evidece against current thinking is. But the other saying "You can take a horse to the water ----" is just as appropriate.
I also mentioned to him the your paper that I gave him last time - for which he promised me written feedback. I mentioned that you were looking forward to hearing what he thought. He has once again promised to get back to me on that one. However, I think we had better not hold our breath!!!!
Well, there is still more to come from us. We've engaged some Mercedes car engineer systems analysts from Stuttgart to do the frighteningly complicated computer analysis of thyroid function and body T4-T3 conversion and how it all works together. The maths is beyond me but I'll summarise what this accepted paper in Frontiers in Thyroid Endocrinology says. The thyroid when healthy doesn't just produce T4; it produces some T3 as well. This T3 production is directly controlled by TSH. Thus the thyroid isn't simply a producer of required material for use somewhere else. So we can look at the whole situaion as a parable. The pituitary TSH is the impresario; supplies the money to fund the orchestra but is not so good at conducting. The thyroid's T3 production is the conductor of the orchestra.The T4 produced by the thyroid is the score given to the orchestra (the body) to play the correct tune (T4-T3 conversion). All work in perfect harmony: money given, conductor conducts, orchestra plays. Now the thyroid is lost. No conductor any more. T4 must be given or T4/T3 combo by mouth - a different orchestra with a different score. However the impresario by himself is not good at conducting, so the orchestra can produce a bit of a cacophony and the harmony is definitely inferior.
Hi D. I didn't want to just 'like'your response 3 days ago to dolphin re her thread "Need to have a rant." Rather wanted to be specific about the parable. Such an easy way to explain the whole process. Copied it and am bringing it as part of my documentation when I see my GP later this month as part of my argument for wanting off levo and trying NDT. Thanks. Very simple and well-put. Even a doctor should be able to "get 'it. irina1975
I just happened to chance on an old thread on HU...and I can see that you know what you’re talking about.
I don’t want to be boring....but wonder if you can give me a bit of guidance.
Cutting story extremely short...to fill you in..
Almost 70...
Hahimotos.
NDT...was 2.25 grains bit since this time last year 3/4 grain..due to Progesterone cream
Am on lowest dose HRT patch,.25 mcg..since total hysterectomy at 45 due to Endemetriosis.
LAST two years on Adrenavive..
Am overall better than I have been...but still suffering this that and the other...and being completely unscientific struggle with understanding it all and what to do about it...
Lack of funds makes the whole testing area difficult...
A friend sent me a link to the Tom Brimeyer website..and an article about what he thinks is wrong with taking cortex and the like...plus his own take on it all.
Interestingly , Dame Doctor Shirley Bond who wrote Natural Progesterone..largely based on Dr Lee’s research...
She told me on the phone that she doesn’t agree with products like Adrenavive at all...but wouldn’t discuss it with me...wouldn’t take me on as a telephone patient because she said my history was too complicated!.
Needless to say, her opinion on Cortex products..and the like, has rather concerned me...
But then, Dr P himself uses it,..
I’d love to be without cortex...but I can’t raise the thyroid dose at all it seems, because of my Adrenal problems...and this doesn’t seem to improve enough.
And I have some difficulty k owing quite what is what withthe estrogen Progesterone equation...
Since being on Progesterone cream it’s increase vaginal dryness and some discomfort..albeit not terrible...more frequency of spending a penny...
You seem very knowledgable...do you have a thyroid condition yourself ?..is that why you write on HU? I’ve been impressed with some things you’ve written...
Do YOU do consultation?
Or would you recommend anyone to me..I live on the Essex coast..
What do you think of Tom. Brimeyer s take on cortex products.... his website is the sort I instinctively steer clear of,..as I can tell he is out to make a buck...whatever ! But doesn’t necessarily mean he’s a dude.
Hope I haven’t overwhelmed you with this lot,..
I tried to be brief.and to the point.
If you do t want to answer ..any of it...all of it...fine.
First of all to try to address your adrenal concerns. I'm not a medic, but if you Google "Dr Henry Lindner" and look at his site you will find an extremely knowledgeable US person who knows a lot both about thyroid problems, therapy and hypocortisol conditions caused by it. And what to measure and what to do about it. I wouldn't touch Brimeyer - anyone who wants paying for info has an agenda I'm not happy with. Secondly, I have not got thyroid problems but my wife who is now 80 has had Hashimoto's for 50 years, no thyroid for that time, has been on T4 only, and always has either undetectable or very low TSH, but no concerns over treatment, bone strength or (after starting to take magnesium citrate) atrial fibrillation. Her doctor has been tamed about this and no pressure is brought to raise the TSH. As you can see you youngsters have a way to go. As I'm only a biochemist turned physiologist I can't recommend medics but I believe Dionne at TUK can help. BTW I don't do consultation, but open my mouth (by this site) perhaps a little too often.
Dolphin5, I think you sound very brave, on the ball, and you're doing a great job. Both at treating yourself, and giving the Lunkhead an opportunity to learn if he wants to!
I gave up with my GP when he stopped my T3 with immediate effect and said that I had never been diagnosed as hypothyroid. I was diagnosed by a private doctor using the 24hr urine test. I had been given NDT and T3 by the GP practice before this so, I postulate, if I had never been hypothyroid why were they prescribing thyroid medication? I buy my T3 from a friendly ‘drug dealer’ (true in the strict sense of the phrase).
The thing is, he totally believes that he is right, and the recent research plus my views are wrong. It's sad to see all these medical professionals so brainwashed and blinkered.
Perhaps we should be setting up a new campaign to rescue GPs and endocrinologists from the abuse they've suffered - the brainwashing and being led all the way up the garden path - into a dead end. They seem to be totally cornered and stuck! If they support us and take on board the recent research, they will, metaphorically-speaking, get their heads cut off!
Good questions! As he's a specialist in diabetes, I suspect that he has published none. As for the research, I have been unable to get any answers about why the research might be wrong (or the old research right). He smiles sweetly at me when I try to get that kind of information out of him, but he doesn't give me straight answers.
Worth a try - just for fun!!!! Sadly, he may just assume that I think he is a thyroid specialist, and then he would grin from ear to ear, glowing with pride!!!
There are tones of voice to indicate just what you are thinking underneath.
I think a big problem is that doctors will rarely learn much from anyone other than other doctors and as NICE guidelines have taken a hold they nolonger even listen to other doctors who rock the boat a bit. They have a very narrow field of learning. I think they have cultural learning difficaultys as a result as every bit as limiting as something like downs syndrome.Even if he read the articles he would not be able to take onboard or understand unless all his medical peers were saying something similar. It does not a just affect thyroid patients. When I first qualified as a nurse I had a chat with an ambulance crew about broken bones in the elderly confused. It was a known fact they were often missed. The ambulance service had found a much better way to spot broken bones in the elderly confused but tried for years to get the local GPs t come to meetings with their chief who completed a PHD to study it more carefully. Nobody medical would come and listen. The ambulance crew showed me what to look for and twenty years later whenever I started a new job in a nursing home I would find at least one untreated broken bone. The doctors has learnt something in medical school, taught by another doctor and they didnt need to listen to anybody else thankyou very much. It is infuriating. Somebody needs to take the piss publically.
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