Interesting Reading

Well insomnia has struck again but I have come across some interesting reading

Started by finding this

healthunlocked.com/thyroidu...

Which lead to this, a bit heavy going but I think I get the gist.

jci.org/articles/view/77588

If your still conscious after 'reading' that. Unfortunately I was ! Then theres lots more interesting stuff in the references at the bottom of the article. Ive selected a few. Most are extracts but the full piece can be viewed by clicking the link at the bottom. If your looking for stuff for your doctor or endo, I hope your black ink cartridge is full. Mines now empty !

ncbi.nlm.nih.gov/pubmed/164...

ncbi.nlm.nih.gov/pubmed/218...

ncbi.nlm.nih.gov/pubmed/197...

ncbi.nlm.nih.gov/pubmed/188...

ncbi.nlm.nih.gov/pubmed/864...

These are just a selection. Lots more interesting stuff in the references

Happy reading

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  • The sad thing is Why isn't anything changing ! Is it just me or does it feel like ground hog day ! I bet helvella and shaws must feel a bit like that : (

  • 3. Just how long was Murray's character, Phil, trapped in Groundhog Day?

    <director Harold> Ramis once said Phil was trapped in Groundhog Day for 10 years, even though the original plan was to have him trapped for 10,000 years. According to the website Wolf Gnards, which ran the numbers, Phil was actually trapped for eight years, eight months and 16 days.

    hollywoodreporter.com/news/...

    (To be taken with tongue firmly in cheek.)

  • How many years do you feel like you've done so far ? 😞

  • Just seven years here on HU... :-)

  • The Endocrinology don't want change and doctors who would offer patients alternatives are now banned from doing so.

    It is more like why doctors like Dr Peatfield and Dr Skinner and others like them who were trained as students on how to diagnose and treat patients were pilloried by the Endocrinology who must have thought they had more knowledge than those two put together. Have you read 'Tears Behind Closed Doors' and the experience of Diana Holmes who wrote? It is not unusual which is more the pity and none woud accept Dr Skinners' Invitation to a Conference with all the Endocrinology about the Parlous Situation patients faced.

    These doctors were then pilloried (other doctors too) because they believed the guidelines were wrong and patients were not being diagnosed by symptoms but on the TSH alone.

    How the Endocrinology fell into the trap of big pharma with palms outstretched, it would seem, as levothyroxine was supposed to be less 'variable' than NDT.

    They cannot admit we are not on this forum for 'fashionable' reasons but for humane reasons, in that we want to get well but are being denied the option of other thyroid hormones if levothyroxine doesn't work for us. We are then given 'extra' prescriptions for the remaining clinical symptoms, anti-d's apparently seem to be No.1 then pain relief. etc etc. They are unaware T3 is needed to relieve everything either within NDT (rumours have been spread about it after being in use in various forms since 1892), sufficient levothyroxine (doesn't agree with everyone) or T3 added to T4.

    It's a pity they forgot they were treating human beings and not machines as 'one size' doesn't fit all. Our body dictates what we need - not Endocrinology - or doctors. Also CFS and Fibro can be eased with thyroid hormones too. Misinformation also shouldn't be issued to frighten us into submission, ie. heart/bones.

    There would be no need for this forum if one or two only were looking for advice/assistance as they'd get it from the GP/Endo.

    Lyn Mynott started TUK due to her mistreatment.

    These are a few of the previous Petitions.

    parliament.scot/S4_PublicPe...

  • shaws thank you so much for that. It is like you read an email I sent UrsaP last night. I'll try and copy paste part of it.

    I've had quick scan of the petition and will read properly with interest later. Just recovering from a slightly large Sunday roast mmmmm 😋👍

  • I had been doing a bit of research just before UrsaP posted this and intended to reply shortly after. But due to my recent bad insomnia Ive been struggling. Anyhows after going to bed at half 5 last night I emailed Ursap what I was going to put as my reply to this

    healthunlocked.com/thyroidu...

    This is hopefully some of my reply

    I do feel a little like Rapunzel that the letter writing is not enough. Its so easy for them to ignore. So is little bits in the media, whether it be on the one show, this morning or even an hour special done by Michael Mossely.

    Part of me feels that the health service is rapidly moving away from what it was initially set up to be, ie: free health care for all.

    I know you know this, but because of the massive advancements in medicine and the growing and aging population I think it is unreal to expect the health service to continue under the same brief .Particularly if the conservatives get in again. I do think this is part why they are so reluctant to include t3 in treatment going forward, particularly at the price it is.

    After saying that I think the best way to concentrate our efforts is trying to change their policy regarding the exclusion of t3 from treatment. There really is good enough evidence out there. But it would probably need more to convince them. I do think it is worth continuing with sending out Lucys letter to MPs etc. But to be honest I think we are pissing in the wind a bit going in that direction.

    I just feel it needs to be bigger. Perhaps a petition would be a good place to start. I think it needs to be 100,000 signitures or more to get any recognition from the government. I was hoping to do a fundraising / awareness raising stand on World Thyroid Day this Thursday, but with the way Ive been health wise Ive felt I just couldn't commit to it.

    But as you know I do feel there are thousands upon thousands out there believing their docs that its not their thyroid that they have a whole range of other medical problems that the doc can through endless medications at. Making the drug companies a whole lot more money than to just treating us properly.

    The other day when I said Id be back soon Id been looking into NICE and RCOP. As these are the people we need to convince. I didn't get far with the RCOP website. But did find some interesting stuff on NICEs website that may be helpful.

    As you probably know NICE was created in 1999. Since then various agencies and bodies have been amalgamated into NICE; ( Cant believe I just spelt amalgamated right with out looking it up ! Wowzers ! )

    Key point no1 - all NICE guidelines regarding the treatment of hypothyroidism, from what I have read are 'inherited'. I cant find what agency they effectively replaced, but it looks like they have never actually done a formal study / review into the treatment of hypo. An achillies heal perhaps ? ?

    The next paragraph is virtually word for word from their website

    Key point 2 - in 2002 they created the Patient Involvement Unit, which later became the Public Involvement Programme PIP. It says - get involved as a national organisation. National patient or voluntary organisations can register as stakeholders for individual topics. this means we can help set the questions we are looking at and comment on the research evidence and draft recommendations.

    They may also be invited to nominate experts to attend meetings or identify people to join working groups.

    How to get involved - PIN - Patients Involved with NICE - is an independent group of patient organisations aiming to ensure that NICE decision making is centred around the patient, their family and carers.

    Email - PIP@nice.org.uk

    PIN - Laura Weir - lweir@mssocirty.org.uk

    Phone 0845 003 7788 to ask about PIP

    Is this our window perhaps ?

    I'll double check the contact details, Ive not been 100% lately, but that's what Ive got in my notes.

    After saying all that one of the agencies first mission statements in 1999 was to - create consistant guidelines and end rationing of treatment by postcodes across the UK. They've had 18 years to do that and how far have they got ? ? ?

    What are these people paid for ?

    Although I do think this is worth a shot. Get it at the core.

    I do realise yous - Shaws Helvella Lyn Louise and all the rest of yous have been there done that. Its just ground hog day, but ground hog day ends ! So perhaps there is hope ?

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