The Reality of what we are up against in the UK

I believe that the below links open official documents that make it clear that the UK government and NHS will not change their position no matter how many petitions:

british-thyroid-association...

google.co.uk/url?sa=t&rct=j...

I think the only way to change their position would appear to be a number of studies carried out scientifically on sub groups of patients proving that ndt or t3/t4 combination treatment is beneficial enough to those sub groups..

Hi to all you suffererers out there. I am suffering from under treatment (mistreatment) of thyroid replacement hormones, having had a total thyroidectomy for amiodorone induced thyrotoxicosis. My symptoms are:

- Mental health problems

- Headaches

- Cold patches on my body

- Joint aches

- Serious fatigue

- Weight gain

- An undescribable horrid feeling throughout my body and mind that I guess some will relate to.

I'm currently taking 150 mcg levothyroxine daily, my tests have been FT4 mid to upper end of range, FT3 lower end of range, TSH high end of range usually above 5.0

Because they are all "within normal range" there is nothing more the NHS will do in terms of treatment/testing. I exercise a lot, don't smoke, drink, or take rec drugs.

I have teenage boys who I love immensly and a wife who is trying hard but sometimes we all bicker and fight.. When that happens I feel like something is wrong in my head and I start to have rages that I can@t get out of for days.

Thanks to the wonderful folk on this forum, I have an affordable source for the medicines that I think I may need to help me and I have some here. I haven't started taking them yet because I have one more meeting with the endo on sept 09 and hope to convince him to prescribe the medication I need along with a testing regime so that I can continue trying to get well within the safety of testing regularly. I don't hold out much hope because he seems to be very corporate about it nowadays...So most likely I will start self medicating Sept 10 but I cannot pay for the regular testing privately, actually I am nearly bankrupt now!

For me this is complicated because of having had a cabg two years ago and then atrial fibrillation I was given amiodorone for the AF which apparently triggered underlying Graves disease resulting in a long course of carbimazole and eventually a TT. I wish I had known about all this before having the TT but alas I was ignoramus and just trusted the cardio and endo with my health. Like I said it's complicated but after everything has been said and done I truly believe that the surgical removal of my thyroid gland was certainly more beneficial for the 'ologists' than for me!! But all of that has since led me to this.

Having done some research (to the best of my ability) and arguing with various GPs and an Endocronologist in the NHS who is known to have prescribed Liothyronine in the past. I have come to the following conclusion:

Without any disrespect to anyone involved with Thyroiduk, (I think this is a wonderful resource for all us sufferers!!) people on this forum are brilliant!

This situation needs a serious benefactor who wants to leave a legacy of helping thousands by funding the necessary testing and trials to force the UK govt to rethink its position if indeed, as many believe, we are being denied truly beneficial medicines. I think this would cost serious money and would take serious committment. Is there anyone out there like that??? or willing to offer up a testing facility and some serious funding?? If so please get in touch..

Maybe I'm completely crazy to even think about all this? Perhaps it's all just insanity, in my head like the GPs infer!

21 Replies

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  • The problem is that the NHS is an unresponsive dinosaur. Since the dates of the references these organisations quoted, the whole story has been changed and the essential need to a) promote the individuality of presentation of the patient over biochemical results if they disagree b) archive FT4, FT3 and TSH results (when well and before disease onset), c) use FT3 as a target test (with due regard to alterations in non thyroidal illness) in patients whether on T4 only, T4/T3 combination or T3 only and d) downgrade the use of TSH as a test for adequate treatment (retaining it for screening firstline hypothyroidism only) is now well founded. The real obstacle is that the powers that be are like mules - the harder you pull the harder they resist until the strength of your pull overwhelms even them. Put frankly neither the BTA, BTF nor the commissioning groups (who only parrot what the other bodies tell them) have any clue about modern thinking and are completely out of touch with modern research. In the USA for example, a leading thyroid researcher actually asked rhetorically concerning T4-only treatment ; "could we be wrong and do some people need T3". Such a question would not occur to the boneheads that typify a lot of British thyroidology. I think the US will eventually lead the way and we will drag our feet ever so reluctantly, and be forced to follow. When that day happens don't think the power that be here will apologise - actually they never thought otherwise and to suggest they did would be insulting and met with either bluster or dignified silence.

  • Diogenes you know this dinosaur well I can sense. What you seem to be saying is that it wouldn't matter what proof was offered that they will just refer back to some outdated documents somewhere that disagree! Oh dear I really thought that there were some proactive and sophisticated people at the cutting edge of medicine? Not a bunch of "boneheads". What a huge disappointment..

  • bardak - diogenes is an Advisor to the ThyroidUK charity.

  • I think serious consideration should be given to moving treatment of Hashimoto's from endocrinology to gastroenterology, as well as dietitian/functional medics treating vitamin deficiencies, food intolerances, especially the gluten connection, but also all other leaky gut issues.

    Isabella Wentz, Chris Kresser, Amy Myers, Susan Blum ......all American, are making great strides forward in demonstrating that possibly ALL autoimmune disease, but especially Hashimoto's begins, is caused by, or continues to be unresolved, by problems in the gut.

    As Hippocrates said over 2000 years ago

  • Read the latest response from the Scottish Government regarding the (Scottish) thyroid petition. Does it look as though anyone within the Government actually cares???

    parliament.scot/S5_PublicPe...

  • That petition response is very disappointing, but somehow not surprising.

    Is it the end of the petition? Or are there more stages to go?

  • humanbean - I don't know. What's needed is folk from the Committee to stick their head above the parapet and tell that person who responded to flippin' well open her eyes and ears and think for herself.

  • It's a committee reply e.g. the reply to recommendation 5 is a clear example of how not to answer the question asked properly.

    It would have gone through a lawyer and been modified so it says nothing.

  • hi cinnamon girl

    Thankyou and you are right, they don't care! Those responses could have been drafted by the Endo I've been seeing. So corporate and unyielding! I wonder if the people who uphold these views would do so if they or a family member was suffering? Or is it that they can afford private testing? How depressing!

  • You're right, it is depressing. Not everyone can afford private testing or indeed a private doctor. The crux of the matter is those that devised the guidelines are too cowardly to admit that they got it a bit wrong and failed to listen to patients.

  • "could we be wrong and do some people need T3"

    At least Jonklaas in New York Times. Says foxnews: foxnews.com/health/2016/04/...

    A participant reported that in 15. International Thyroid Congress 18.–23.10.2015 (Orlando, Florida) many doctors privately admitted that combination therapy made their patients feel well at last. "But we do not know why."

  • diogenes may I say re 'being led by the US' at one time I would have agreed but my recent experience there shows signs they may be taking a big step backward.

    My mum (who lives there) has changed her gp from one who recommends ndt to one who only prescribes it reluctantly, and who has steadily reduced her dose until she feels exhausted. She saw an endo in the hope she'd get an increase and has been sent down a rabbit hole of DEXA scans and osteoporosis treatment and the endo doesn't seem interested at all in discussing actual thyroid issues nor raising the dose.

    I wondered if when they changed the tsh range (raising the high end of the range) if they were preparing to shut down some of the more progressive changes that had happened in the previous 10yrs.

    I think the only thing to do is for my mum to go back to her old doctor, but if her other docs are too conservative I'd say the old one is kind of a loose cannon. We may have to put up with their idiosyncrasies just to get our hands on the meds my mum needs to feel well.

    But perhaps - I hope - you know things I don't, or maybe my mum is just unlucky.

  • In the big picture US may at last be the game changer. Antonio Bianco (president of the American Thyroid Association) with his team at Bianco Labs (Rush University Chicago) is devoted to find why Levo doesn't help all: foxnews.com/health/2016/04/...

    Bianco tries to be diplomatic saying "the guidelines recommend only against the ROUTINE use of combination therapy" medscape.com/viewarticle/83...

  • Oh gosh, that does sound positive. Whatever we think about the private healthcare system in the US, it does seem less stuck on uniformity than the NHS.

  • Thankyou Ellismay.

    It's nice to know someone doesn't think I'm mad! I have tried convincing several GPs but they all say the same thing and won't override the Endo...it's a broken record, a dead duck!!! On fact because I have tried a few gps they can all concur that I'm a head case and I gave become easy to dismiss for the next gp I try...believe me I've tried!! The Endo I see os the only one on the list of "friendly" endos around here, but he must have been got to by the CCG because he is now unwilling to do anything other than follow BTA guidelines. Maybe he got burnt or something.. I can't just keep getting referrals to more and more endos there are a limited number around here nth essex/west Suffolk.

  • I've just seen this news headline - theguardian.com/society/201...

    If it's cheaper in the short term due to working on a yearly budget for those with long term chronic conditions to be given cheap drugs and ignored then that's what is going to continue to happen.

  • I would refer the NHS to the Monopolies Commision.

    The NHS itself as an entity is very good, but the institutionalised thinking of the Managers working within it need adjusting.

  • Every few years the NHS reorganises at great cost ,the wheel keeps turning although it looks like it is coming off the wagon this time.

    And we are one of the richest countries in the world? Just read quarter of births are to foreign born mothers.Our local maternity service moved to a hospital a dozen miles away at the end of a choked up road.A nurse tells me baby's have died because of the extra travelling.

  • That is so sad! If a nurse is saying things like that then the politicians need to listen good!!! It would be great if the nurse would make the report to the media or the appropriate authority (whoever that is). Everyone should know about this!

  • Did you see the recent article in the Telegraph that whistle blowers in the NHS who had been dismissed and won at a Tribunal were unable to get a NHS job!

  • No didn't see it but doesn't surprise me, not just NHS like that we are living in a society that accepts people being mistreated in the way you describe. But pls don't get me started on politics coz that's what it always comes down to!! And the elitist class wins every time.

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