educating the educated

As someone quite new to these forums, despite 20 years of being hypothyroid, thanks to Hashimoto's, the common theme throughout is how ill-educated and uninformed GPs and even many endocrinologists are in the realities of living with and treating this condition. Surely there must be something we can do as a group to change this? Does anyone know if there is any lobby group I could lend my voice to?

I looked into forums as I have reached the end of my tether after 20 years of high dose levothyroxine, inability to lose weight and a general day to day feeling of everything just being too much effort - though I do make myself perform functionally. Although it is wonderful to find all the support I have through forums like this, wouldn't it be even more amazing to be able to go to my GP who, if she was unsure herself, would refer me to an endocrinologist who would understand all the tests I would need to have, the diet I would need to adopt, the deficiencies I have that can be helped by supplements, and advice on which? It is a crazy state of affairs that people are sharing their test results on Facebook for us to diagnose and comment on. I was thinking of beginning by contacting the Royal College of Physicians to ask why this state of affairs persists and why few health professionals seems to be au fait with the latest thinking and research and approaches to treatment. I don't believe my doctor knows I have Hashimoto's or would know what to do about it if she did. She sees my hypo thyroidism as isolated from all those other auto-immune problems I have, including my psoriasis, aching muscles, arthritis, multiple food allergies, Reynaud's, gall bladder removal etc. And that is all I expect from her too. No help or understanding whatsoever. How can we change this? There must be a way.

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  • I know. I think many of us share your feelings on this. At times, I read posts here and feel utter despair that someone's been left to suffer needlessly.

    I think (and this is just my view) that the short answer is that there simply isn't enough money in the NHS to sort out this situation. And if they spent it on us thyroidies, what would they not be able to spend on other diseases? And yes, I know that many of those other diseases might not be such a problem if thyroid problems were treated properly.

    The other thing is terror of litigation. There's not enough research done out there on different treatments and the research that's done is often paid for by pharmaceutical companies who have a vested interest in keeping us sick, and if possible, making us get side effects that require even more medication to keep at bay.

    Incidentally - I've often observed that hypothyroidism is linked to paranoia ;) :D

  • I was paranoid long before I was hypothyroid, Lilymay :-D

  • Or were you...?

    :D :D :D

  • just a little footnote ......... I've never been paranoid ---AND NEITHER HAS THE FAELLA THAT KEEPS FOLLOWING ME !!!!!----- alan xxx

  • Alan, he's probably from the recycling centre wondering why you hoard ali cans :-D

  • MEEOW !!!!!----- just wish I could print a few smiley faces on this ......alan xx

  • Even paranoids have enemies.

  • not enemies .....but opponents of the mind !!!!!! ...... just make sure you keep 1 step ahead of them !!!!! .....alan xx

  • Blimey, it's enough to make you paranoid. Feeling like you're the victim of a very complex conspiracy to not help and make you feel worse about yourself by saying things like eat less and exercise more and try harder.

  • Welcome to the forum, Amiedecannelle.

    Thyroid UK (and other thyroid fora) do raise awareness but it is a struggle and many medical professionals just don't 'get it'. If thyroid disorder was simply cured with Levothyroxine or Carbimazole you have to wonder why there are upwards of 9,855 research papers published worldwide mentioning thyroid issues.

    Have look at the Thyroid UK site thyroiduk.org.uk/tuk/index.... and perhaps you could sign and share the petition into funding research into T3 and NDT too epetitions.direct.gov.uk/pe...

  • Indeed, Clutter. It seems to be an impossibility to get doctors to understand and meanwhile my life ticks away, year by year, without feeling 100% or even close. I have signed the epetition. Maybe I just have to try and educate my doctor and work up from there.

  • Amiedecannelle, sometimes a supporting piece of research can persuade a GP to increase dose when TSH is middle of range but it's hard to see what more can be usefully done in a 10 minute consultation particularly if you have the sort of GP who can tell, by looking at you, that you aren't B12, ferritin, folate, and vitD deficient or low.

    Being knowledgeable about thyroid and vitamin/minerals definitely empowers patients in requesting relevant tests and understanding the difference between 'normal' and 'optimal' though.

    I've had some lively discussions with my endo about T3, evidence based randomised control trial research and vitamin D. We don't agree on much other than my health has improved since I've been taking T3 in addition to T4. :-D

  • Clutter, I would love to be a fly on the wall during your endo appointments! But if you, with all your knowledge, can't convince your endo to look again at the way thyroid disease is treated it doesn't look like things will change anytime soon.

  • MB, We tend to agree to disagree and I sometimes do as he suggests :-D I haven't tried to teach him to suck eggs but I did quote research re the benefit of T3+T4 for thyroidless patients. He rubbished it, too American, or not robustly random controlled trials etc. but I'd been self medicating and the improvement in my health was undeniable so he prescribed it. I laughed out loud when he said vitD deficiency doesn't cause musculoskeletal pain at our last consult. Probably the first time he's ever seen me laugh, thinking about it.

  • My doctor said that to me 'we must agree to disagree', meaning you will do as I say because I've been a doctor for 40 years blah blah blah. I said, no way! We do it my way or not at all. He said, alright, on your head be it! Well, yes, it's always on my head. If you get it wrong, I suffer!

    This was after he had seen my TSH at 0.45 and wanted to lower my T3, even though my FT3 was bottom of the range. He said, oh, we don't care about that. The most important test is the TSH. Sooooooo, we had a long row, voices raised, about blood tests, and that was the result. We did it my way! lol

  • GG, they forget we're the ones living with the consequences whether they, or we, are right or wrong. Endo made a point of saying and writing that I should take 20mcg T3 in the morning and 10mcg at night. I've found some European research saying the larger dose should be taken at night as it mimics circadian rhythms closer. I'm going to try it that way and see if it makes me less sluggish on waking. Not something I need to make an issue of to the endo if it is better for me (unless he irritates me).

  • I take all mine in one go at night. It suits me.

  • GG, I used to until endo suggested 2 x daily. Tried it, and didn't notice any difference, so I've stuck with it.

  • Well, it is easier, because you don't have to wait for breakfast. And the one thing I want when I get up in the morning, is a nice hot cup of something! I need that warmth in my throat. But plain hot water just will not do!!! lol

  • I tend to suspect that most GPs are too old to have kept up with the latest research. I have a new GP who is very young (under 30 I think) and quite knowledgeable about thyroid treatments and causes and who acknowledged that most GPs are just not up to speed on the subject. She even acknowledged that 'sub-clinical hypothyroidism' does actually exist!

  • I don't thinks the age of a GP is necessarily the guiding factor wbowles. I chose a young female GP to discuss my severe deterioration on T4, and to request the addition of T3, on the basis that she was likely to be empathic , open minded, recently trained so lots of information in the memory banks, and not worn out by age therefore motivated to help me. Pah! I would have been better off talking to Methuselah or Attila the Hun. ;-)

  • Bad luck! My current GP seems to be the exception, she actually seems to care about me not as a dis-ease but as a person, so perhaps I lucked out. My previous GP was also hypothyroid like me and didn't seem to think it was such a big deal. It's the luck of the draw apparently.

  • If there was any accountability things would be different. Even the GMC don't care when GPs misdiagnose patients leaving them to a miserable existence.

  • The answer to that is simple : Big Pharma! We are their 'milch cows' (their words, not mine!), we bring them in so much money with the statins, the diet pills, the antidepressants, etc. If doctors were correctly educated and knew how to diagnose and treat thyroid, we would need all their little extras to treat our symptoms. And they would lose a fortune!!!

    How to turn the situation around? Bring about the demise of Big Pharma! Think you can do that? lol The rot has started to set in, though :

    naturalsociety.com/monsanto...

    Wish them luck!

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