I’m just wondering if there’s ever been any studies or surveys done in Britain on thyroid patients,I’ve been looking at a lot of the links I’ve been given on here and doing a bit of research myself,but it mostly seems to be from other countries.
I can’t believe that there’s that many people not happy with their thyroid treatment,or lack of it,yet nothing seems to get done about it🤷♀️
Is it really a case of money matters more than someone’s quality of life?
There have been several papers based on the Whickham Survey - such as this one:
The incidence of thyroid disorders in the community: a twenty-year follow-up of the Whickham Survey
M P Vanderpump 1 , W M Tunbridge, J M French, D Appleton, D Bates, F Clark, J Grimley Evans, D M Hasan, H Rodgers, F Tunbridge, et al.
pubmed.ncbi.nlm.nih.gov/764...
And there are others but it isn't always easy to search for them.
Thank you I’ll have a look at this👍
There’s approx 2 million people in the U.K. on levothyroxine
The medical “authorities” generally accept that between 10-20% of patients don’t fully recover on levothyroxine ….that’s 200,000- 400,000 people (90% bring female)
Obviously it would help if the remaining 80-90% were adequately tested and prescribed……we see frequently on this forum that they are not ……many left years or decades on 50mcg or 75mcg and poor quality of life as direct result
It’s just so wrong isn’t it.I’m hoping to have my private blood test results tomorrow🙏
Is that true? 10-20! And yet when you tell your GP that levo doesn’t work for you .. tumbleweed blows.
it's 'acknowledged' to be correct , lots and lots of papers make reference to it ... but most times when you see this approx 10/15/20% figure mentioned in NHS information .. instead of "do not fully recover" it is referred to as "are dissatisfied with treatment" .. successfully making it sound like an 'attitude' problem rather than a 'treatment' problem . Yes to the 'tumbleweed' experience ... pharmacists do it too, if you say you can tell the difference between brands of Levo ... " well nobody else can ... it must be just you "
No-one except for the thousands of people who can!
Yes well , 'all their chickens are coming home to roost' ~ now we can all talk to each other on the internet ~ it's no longer so easy to make people believe they are the only one who's complaining they have not fully recovered their former health with Levo replacement.
Personally i have serious doubts about the "90% do well" figure... i bet it's nowhere near that many.. it's just that no-one in the NHS has actually asked them about all the symptoms that could still be thyroid hormone replacement related, and they all show up on the GP records as having "well treated hypothyroidism + coincidental 'other' health issues" that will of course not show up on any thyroid treatment statistics.
I wouldn't be surprised if it's more like 50% who genuinely "do well" on the Levo/ TSH monitoring method of treatment. and the other 40 % just think their thyroid is treated and if asked on an NHS survey , would record all their 'other' things as 'not thyroid related' , because they've always been told that by their GP.
Everything you have just said, I agree with.No scientific basis to refusing so many people the help they say they need and who then - once they have to pay for it - find out it does work!
Totally agree with you,if it wasn’t for the internet I would be none the wiser.I’m rather hoping she says to me that most of the people do ok on it,I’m going to ask her to point me in the direction of the data to support that,as I can’t seem to locate it on the internet.
yes, i'm really looking forward to the next Pharmacist who tells me "all Levo tablets are the same as each other "
Why would 10-20% of people be dissatisfied if it worked for them?
Eurgh! First name on that paper - I paid to see him. Supercilious and very unhelpful. Told me I needed bariatric surgery and that there was nothing wrong with my thyroid. I paid for that advice and left his clinic in tears.
I know people who pretty much know they are being mismanaged, but won’t say anything for fear of the situation deteriorating yet further if they pee off the GP.
I think 20% is probably a somewhat conservative estimate as most of the population are groomed to expect little or scared to ‘rock the boat’.
Yes I'm one of them. The experience has persistently been so negative I've left GP after GP appointment in tears, been shouted at on one occasion for asking for an increase in Levo and the more I persisted it was eventually put on my notes that I'm suffering depression. This without my knowledge. How do I know? I went for a Pip assessment and the assessor said 'I see from your records that you also have mental health difficulties'
I've given up. Showing tests results which clearly show almost no conversion of T4-T3 made no difference. I have always had to increase my levo off the books.
Some supposed nurse (highly suspect) posted the other day about medical qualifications and stated doctors are trained. But that is the problem, the training as far as thyroid disorders is concerned is faulty, so the bad experience is replicated over and over, like a cake baked in a dented tin.
And you can't blame them, as the knowledge gap means even among the few willing to listen, you have explain quite a bit first. I told a doctor about the small amount direct T3 produced by the thyroid and was told no, T3 is converted only in the cells and 'isn't part of thyroid function. The thyroid only produces T4'
There are knowledgeable GPs out there, but it's pot luck. Even those willing to listen, I don't have the energy. I now feel real anxiety going to the doctors about anything.
But this is also a womens issue. Women get rubbish hormone treatment too. Women are treated quite badly in the health service. It's not until you get there that it becomes apparent. Complain and it's all in your head.
I was once asked by a consultant what my marital status was. No man would ever be asked that.
I’m at my wits end honestly,but I’m determined I won’t be dismissed!I saw a mental health nurse in January whose first suggestion was anti depressants🙄without even asking me anything,I thought I would have more joy with him on my side trying to get through to doctors,how wrong was I!
I suppose it is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.
If all you are competent to prescribe is an anti-depressant...
Hi Alanna012 PrincessAnnie
If you read my profile, I’ve documented my journey (whilst being in range). I have been able to explain to them (GPs) why I needed an increase in a way that fairly clearly showed them the shortcomings of their knowledge - only one was stupid enough to continue the conversation with “You don’t know what your talking about”. Ten minutes later she was bleating down the phone “You have got want you want why are you still having a go at me?”. I was at no point rude, but she was made to feel very small that day. Not pleasant having to do that, but it may have helped her reflect on how she treats her patients in the future.
Truth is the reason I was “still having a go” was her opening statement was “got your blood test back- your NORMAL”.
Not a problem for me, I simply steamrolled her with her lack of knowledge (found out doesn’t actually take that long to overtake them). But for my deferential comrades this might be hard to do. Not because they are stupid in any way shape or form but because just the can’t unleash the b!t8h from within as I can.
She did not ask how I was feeling - at any point. I had to break in to tell her.
I told her she should have asked how I was FIRST. Not after her announcement of my normality 🙄
Symptoms first!
Thank you I’ll take a look and hopefully pick up some pointers🙏I’ve just received a letter today telling me to make an appointment for repeat bloods in 4 weeks time,I haven’t a clue what for,she was supposedly running other bloods to see if there was anything else causing my symptoms,I guess I’ll have to just guess🤷♀️
I’m waiting on my medi check results then I’ll be straight on the phone to her.
Go girl!
I should take you with me in appointments Charlie. You're right I don't have enough B1t8h in me!
Although I really can't be asked these days anyway...too tired.
If you bring blood results here and give detailed account of symptoms it is possible for forum members to advise on best way to move forward.
Getting genned up and overtaking their (GPs) fairly limited knowledge allows fertile conversation with most. Only the really ignorant ones as I described above get confrontational. I used latest NHS guidelines as a basis to ask for more Levothyroxine and also used my friend as an example of the same dose working for her but not me. I also quoted a scientific paper discussing ‘ranges’ and ‘normal’ to help them understand medical ping pong doesn’t work;
Range =cup
Patient =ping pong ball
Ping pong ball in cup = job done
WRONG 😂
during my journey to full therapeutic dose the only thing that changed was where I sat in the range for FT3 and FT4. My TSH is well below one and I have been able to get them to rethink how I am treated by asking simply what is more important here? Treating the lab work or treating the patient?
I’m lucky, I’m not the least bit deferential these days. My situation was never improved by being so, nor did I ever get the ‘quiet life’ I so richly deserved by being deferential and obedient.
CURIOUS
I’m exhausted and weight increase of 12lbs in 14 months
British Thyroid Foundation Blocked Me! 😓
I’m awe of this site. 
