If you like my hypothyroid presentation, please help me to share it with the press ...

[vavthyroid]

Good evening lovely people. I've written a press release with a link to my presentation (youtu.be/5jtloVyE7Mg)(Not working as expected?), however, I NEED YOUR HELP TOO (pretty please) in order to make our Health Minister sit up and take notice.

If you like my presentation, please could you copy and paste this press release (below email list) into your email software REPLACING YOUR NAME / MED DETAILS in the first paragraph and then send it from your email to the email address below. Please feel free to tweak it to suit your conditions.

Thank you so much. The hard work starts now if we want to get hypothyroidism to the top of the NHS agenda.

Your emails to Rt Hon Jeremy Hunt MP will bounce back but at least he will see our emails ...

LIST OF CONTACTS: (Please feel free to add your own contacts)

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Dear Editor

SUBJECT: The true cost of not testing or treating hypothyroid patients effectively.

Please view this short presentation created by a fellow hypothyroid patient on our support forum: youtu.be/5jtloVyE7Mg(Not working as expected?)

My name is xxxxx and I am one of 10.2 million people in the UK who suffers from hypothyroidism.

I been taking xxx mcg of Levothyroxine (T4 only replacement) for xxx years.

I am also taking xxxxx of xxxxxx for xxxxxxx

(please add a list of your meds if you think they are related to hypothyroidism)

I believe that the conditions listed above could be prevented if the NHS prescribed hypothyroid patients T3 and T4 hormone replacement meds. A small investment in T3 would save taxpayers money in the long term by reducing meds and hospital stays.

BACKGROUND INFORMATION

A healthy thyroid gland produces hormones which regulate the body's functions, including the heart, mental health, our digestive system and much more. People with an under-active thyroid known as hypothyroid patients, require replacement hormones T3 and T4 to keep them functioning healthily.

Unfortunately the NHS currently prescribes T4-only hormones in the form of Levothyroxine which means that many hypothyroid patients have associated illnesses including heart problems, high blood pressure, mental health issues, digestion and weak bone problems. High blood pressure, if left untreated causes kidney problems.

Between 1934-1960s, online sources indicate that the NHS prescribed Natural Desiccated Thyroid (NDT), made from pigs thyroid, which addressed T3 and T4 issues. There is a grey area as to why NDT was replaced by Levothyroxine in the 1960s but many hypothyroid patients believe that cost was the issue.

The NHS in its report, 'Nottinghamshire Area Prescribing Committee position statement', advises that “liothyronine is not recommended for prescribing within Nottinghamshire. Patients who have been seen privately should be referred back to the private service for private prescription of liothyronine or recommendation of an alternative treatment”.

The same NHS paper states that T3 costs the NHS £1300 per patient per year whereas Levothyroxine only costs the NHS £26 per patient per year. This NHS paper also advises that it considers that T3 and T4 is dangerous for the heart.

However, an independent report states that "In its document on desiccated thyroid and T4/T3 therapies, the British Thyroid Association presented a grossly unbalanced picture of the stability of levothyroxine sodium, Armour Thyroid, and by extension, other prescription desiccated thyroid products such as Erfa Thyroid … "Moreover, the [British Thyroid Association] Committee failed to account for three harmful effects from T4 [only] replacement …” See the presentation to see the harmful effects.

MIND THE GAP

There appears to be a huge gap between the NHS’s advice and advice from independent hypothyroid experts. It appears that the NHS is working against hypothyroid support groups.

As a result, many hypothyroid patients are taking matters into their own hands because they no longer trust the NHS, Hypothyroids are either seeing private doctors or self-medicating with NDT or synthetic T3 from various importers from abroad. Many patients who have self-medicated with NDT have seen improvements in mental health, blood pressure, reduced uric acid, weight loss and acid reflux and even reduced epilepsy. Please see the presentation for hypothyroid patient quotes.

The NHS is not seeing the bigger picture and as a result hypothyroid patients have also fallen victim to serious associated illnesses through being treated with inadequate T4-only replacement hormones.

We believe the true cost of NHS of treating Hypothyroid patients with Levothyroxine is costing more long term than if it were to adopt a holistic approach and treat us with either synthetic or natural T3 / T4 combinations. Please see the presentation to see the enormous cost of cardiac operations, kidney dialysis and blood pressure, much of which we think could be prevented.

We realise that what works for one person may not work for another, however, the positive reaction to this presentation from fellow hypothyroid patients via thyroid support forums has been overwhelming.

Thank you for reading. Please help us to have a voice. We look forward to hearing from you.

Best wishes

xxxxxx

[Justiina]

I am not from UK so this does not consider me but I listened to your presentation. Was easy to listen, good information and you speak very well. I hope this works

[vavthyroid in reply to Justiina]

Thank you so much Justiina! Had a bad night so your message made me smile. Have a lovely evening x

[Justiina in reply to vavthyroid]

I have to thank you. Your very well made presentation made me think if I should try something similar, have a bit different point of view. You are showing all sides, not just talking about simply well being of patients, but the costs. I am not sure if people over here have tried to do that thorough job.

Money moves people and especially those who make decisions unless they have experience of the illness.

[vavthyroid in reply to Justiina]

I was hoping my reference to cost might spark some interest with those that be! If they don't care about us, hopefully they care about their money!

[Spareribs]

Thanks Vicky - that must have taken some doing!

I so agree - public money could be saved & us 'roidys as a bonus!

It would have tied in nicely with our TUK petition asking to consider alternatives to Thyroxine - if only they sat up and realised that many of us are self-treating with T3 and/or NDT - which is dangerous really as there's no record e.g. if we have to go into hospital.

I wonder how many of us are?

The recent survey has also gone to the Scottish parliament (as requested) & results published in the TUK Harmony magazine.

just a teensy thing, not sure it was called 'the NHS' in 1934 & also (NHS value 4) we are affiliated to the NHS via HU - many members find this support forum by googling the NHS website....

nhs.uk/conditions/Thyroid-u...

J

[vavthyroid in reply to Spareribs]

Thanks Sparerib! Why are you called Sparerib? I know my presentation is far from perfect. Every day I add a valuable comment from a viewer. I can easily add annotations - if not the NHS, do you know who it was in 1934? I can't see from your link - sorry!

[Spareribs in reply to vavthyroid]

I sympathise.... you can end up editing forever!

Sorry to confuse - that link is just to the NHS/HU & this forum.

Aneurin Bevan (a Welshman) fought for an NHS & got it in 1948

(I think) I don't know who it was pre WW2.

I name myself Sparerib, (formerly Spareribs) due to my love of piggies, and congenitally having 2 extra neck/cervical 'ribs'.

Co-incidentally spareribs used to be a satirical magazine... so my excuse not to be taken seriously. J

[MrsRaven in reply to Spareribs]

The original idea for a health service I bekueve was A Liberal onr, and it might have been Lloyd George.

[vavthyroid in reply to Spareribs]

Hey Sparerib. Thanks for your reply I'll annotate the YouTube presentation and I can change it in Prezi as well. Thanks for your hawk eyes. Have a lovely evening.

[Hidden]

Fantastic...all done and sent out already receiving auto reply messages. I am so very proud of you. xxx

[vavthyroid in reply to Hidden]

Thank you Mango! Much appreciated xx

[Hidden in reply to vavthyroid]

You are the one to be thanked Lady vavthyroid x and definitely appreciated x

[Hidden]

Dear Vavthyroid - and also Sparerib, thanks so much for this excellent post and presentation (Vavthyroid) and also for your comments (Sparerib) - all of great interest to me.

I was diagnosed with borderline hypothyroidism about 11 years ago and have taken various doses of Levo ever since. Looking back I've always had immune problems which have manifested in me being highly allergic to many things - usually idiopathic.

At certain points during my life I have thought I should live in one of those glass bubbles we used to be told about in documentaries decades ago. I had allopecia as a child and terrible eczema - which dominated my life on and off until my menopause started in my mid 40s. I turn 53 in a month and my eczema disappeared into thin air about 7 years ago and my hair is now thick and my skin is fine too. My allergies recently have all been reactions to medications rather than the air I breath.

I was never critically ill with

these allergic reactions but have come very close to full anaphylaxis a couple of times and this last year I've had five hospital admissions and week long stays. Two of these hospital stays were put down to UTI sepsis and autoimmune flare up. I'm fairly certain that they were both actually due to pancreatitis from an immunesuppresaant drug called Azathioprine.

I was diagnosed five years ago with rheumatoid arthritis but after trying four disease modifying antirheumatic drugs the symptoms have disappeared - leaving me just with this widespeead parasthesia that no one can account for. It started before the RA symptoms so I can't blame it on recent immunesuporesant drugs or others I've been prescribed for nerve pain or restless leg syndrome or whatever.

I have been on this community before but have taken fright at all the suggestions that I self treat with NTD. I worry that, if the RA comes back and I'm put back on steroids (just got off these), I will be taking a thyroid replacement hormone that hasn't been prescribed for me - without proper medical advice or monitoring. My thyroid bloods were last taken in May and as always these days, my TSH is suppressed at about .2 and my FT4 is low within normal range. On the rare occasion my FT3 has been taken its been bang in the middle of normal range.

I recently moved from an island to the Scottish mainland and was diagnosed by my new GP with borderline hypertension and am taking a medication for this now. I can't say whether it's made much difference yet because I'm quite newly off steroids and my eGFR dipped so I then was discovered to have traces of blood in my urine. I also have ongoing facial pain which isn't TMJ and no one can account for. Basically my mouth feels tight, as if my front teeth were in a vice, and I have pins and needles in my gums and nose. I've had three stroke like events this year and was found to have a flame haemorrhage in one eye recently. I also have paired Oligliclonal bands - as discovered in a lumbar puncture when looking for MS in January of this year. This shows I have something systemic occurring but is otherwise non specific. My CRP and ESR have fluctuated dramatically over the past five years and I'm told all this is confirmation of my autoimmune status.

I'm under a new rheumatologist whom I saw 11 weeks ago and still haven't heard back from. He took a very full history and was thorough and also rechecked my bloods including a few autoantibodies which hadn't yet been looked at. I'm guessing nothing conclusive has shown up yet.

When I read your presentation I was really galvanised to learn more about the thyroid. I'm almost ready to try and find a doctor who will supervise me with taking NTD - even if I have to buy it myself on the Internet. I am not sure yet whether I should go down the naturopathic route or whether to remain under the care of the NHS rheumatology service - even though I have tolerated so few medications and have no wish to be put back on steroids again.

So I will do as you request and send this to Jeremy Hunt because I feel autoimmunity, in all its forms, costs the state and individuals far more than is ever remotely understood by politicians, who are so busy focusing government expenditure on the war on terror that they fail to see a form of terror going on under their very noses!

Sorry this reply is so long and so much of it contains my own story. But I believe I am a good example of the cost to society when the NHS fails hypthyroid patients and hopefully supports what you are arguing re better research and funding to address thyroid diseases in a way that is more sustainable for everyone.

[vavthyroid in reply to Hidden]

Hello Twitchytoes. Thanks for your reply and please don't apologise for the length. It is good to talk My NDT arrived yesterday and I took my first dose this morning. I had been nervous self-medicating but with my high blood pressure, gout symptoms, foggy mind, acid reflux and lack of support from my GP meant I was desperate. These forums are so supportive. I probably should have seen a private doctor but no-one knows my body better than than me and I know how I am feeling. Thank you for your support with the press release. Much appreciated. Let's keep sharing so we have a bigger voice together. Good luck!

[Hidden in reply to vavthyroid]

Well done you for taking this big step. I hope you don't mind me asking but how do you know what dosage to take in order to replace your dose of Levothyroxine?

My autoimmune issues appear to be coming under "very rare disease" heading so my confidence wavers quite a lot about my symptoms. I think i would need to have my hand held with both the ordering and starting NTD. I've had such multiple symptoms and severe intolerences that I can't rely on my instincts anymore to say that that I know and trust my judgement about what's causing what. I'll just have to hope that Jeremy Hunt wakes up and smells the coffee for himself one day soon!

[vavthyroid in reply to Hidden]

Your post indicates that you have suffered far more than me so I'd recommend you saw a doc. Contact Thyroid UK. They are amazing. They will give you a list of doctors. I have joined as a member!

[Spareribs in reply to Hidden]

Hi Twitchytoes

You would be better served posting anew - as more folk tend to respond to help you, rather than on someone's thread. J x

[Hidden in reply to Spareribs]

Thanks Sparerib - will do. And sorry to hijack your thread a bit Vavthyroid.

I wish you much luck with your bid to get hypothyroidism much further up on the list of priority diseases for funding and research than it currently is. I think the sheer numbers this affects and the economics of the NHS's failure to address the needs of sufferers, are In your favour.

I read somewhere that Hilary Clinton takes NDT. I first learned about T3 first from a key politician's wife who was taking T3 with support of a private endo - who had been marginalised by their colleagues for believing in t3/ t4 combination medication and explained this to me. I've never met her again and have since moved location myself. However I believe she is a proactive campaigning type of person so probably already does a lot to try and raise awareness.

I am not in a position to go private just now but I'm already a member of Thyroid UK. However I have my work cut out raising awareness for more rare autoimmune diseases and volunteer for other much smaller charities in this capacity -an uphill struggle always.

[MrsRaven]

Brilliant piece of work. Why not use this as a basis for a petition, eother through petitions.org, or 38 degrees, who are a power in the land and schieve amazing results. Just a suggestion. Once a petiton achieves a certain number of signatures it has to be debated in parliament.

Just a thought.

[Spareribs in reply to MrsRaven]

TUK petitions,

the last one got over 12k signatures - a gov response - 100k for debate in parliament (if my memory serves)

petition.parliament.uk/arch...

petition.parliament.uk/arch...

however a petition to the Scottish government only needs 3 people with a good argument

healthunlocked.com/thyroidu...

thyroiduk.org.uk/tuk/campai...

[MrsRaven]

Reply received from Jeremy Hunt. This is a standard reply as MPs will not address issues brought to them by people outside their constituencies. I wonder if it would be a good idea to take it to your own MP, as well as direct to the Department of Health.

Btw woukd like to post the video on Facebook.

"Thank you for your email, sorry for the auto-reply but I just wanted to let you know that your email has been received.

For Non-Constituents (those who do not reside in South West Surrey):

If you are not a constituent of South West Surrey, and are writing to me in my capacity as Secretary of State for Health, then please forward your email to the Department of Health contact via the link below:

info.doh.gov.uk/contactus.n...

as I am unable to respond to non-constituents from my [e-mail] address or my [e-mail] address.

If you are a Constituent and you have not included your full postal address with postcode please re-email your entire email including this information (as my office is unable to deal with any correspondence without these details).

Many thanks.

Best wishes,

Jeremy Hunt

Rt Hon Jeremy Hunt MP

Member of Parliament for South West Surrey

Secretary of State for Health"

[vavthyroid in reply to MrsRaven]

Yes, everyone will get the same ;-( I think they receive our emails though. If he gets enough he will read them.

[Musicmonkey]

I have emailed most of the email addresses and my own MP. Thank you so much. I do hope it leads to change.