ITT Campaign petition for better treatment approaching 3000 - share your voice

The petition started by Kitti1 is about changing the testing and treatment of thyroid disease.

As someone that was considered to be a borderline case, and perhaps I was depressed (GP words) I am doing a lot better, thanks to Thyroid UK and this forum.

This petition is for change and choice. Your voice counts whether new to thyroid disease and not yet diagnosed or someone that's been ill for decades, and those that are doing well too.

Please sign and share, our voice will be stronger, in numbers.

tinyurl.com/y9wuc8co

[Hidden]

Signed!

[Marz]

Just a small point - on the piece on Change.org - it is mentioned that a TSH above 3 means people are treated in the US. These suggestions for a change in guidelines were put forward in around 2003 I believe - but if you read the articles/websites from the US you will soon realise that it is not followed. Old habits die hard - sadly

[Hidden in reply to Marz]

Maybe, just maybe, the US needs us more than they know 😉

No voice

No action

= no change? 🤕

[Marz in reply to Hidden]

With Big Pharma dominating Private Medicine I doubt that change will come in our time or should I say - my time They earn far more by prescribing so many pills and potions for when the thyroid is not diagnosed or undertreated .... sad but true.

[Hidden in reply to Marz]

I agree, but never before have I felt so inspired to *try* and change things. Foolish Maybe, but I would regret not trying and I think many have that sentiment.

[Marz in reply to Hidden]

Of course. I am only pointing out the US would be a tough nut to crack. Channel your energy where you have the highest return 😊

[Hidden in reply to Marz]

Many of your words and pieces of info and advice have gotten me to where I'm at now. Any pointers on this campaign.

[Marz in reply to Hidden]

Just do not get downhearted when things do not go well - the glory is in the marching .... 😊

[amala57 in reply to Marz]

I think the campaign has to keep a positive focus. If we believe that things can change they will!

We must keep the faith!

[Marz in reply to amala57]

Agree ....

[Kitti1 in reply to Marz]

I realise this is a problem across the globe, because of the reach of big pharma. If there is a chance of cracking this nut, then it may facilitate change else where. I know Justiina in Finland is certainly hoping so.

[Kitti1 in reply to Marz]

I appreciate what you say Marz, and agree. But all the more reason to fight. People need to know about this, as the problem is not solely restricted to thyroid patients. I also wonder whether the fight will be won in my life time and I'm only 47, very nearly 48 (arh ! 50 rapidly approaching) But again not a reason not to fight it as hard as we can. I've been robbed of 30 years of my life, this really has ruined my life and that's why I have to fight.

[Marz in reply to Kitti1]

Of course everyone needs to know and I have signed. I was only pointing out about the US situation and suggesting that maintaining the focus on the UK would bring forth fruit. A big task in itself.

[Kitti1 in reply to Marz]

Just a bit, the US can sort themselves out. But hopefully any progress here can pave the way for others

[greygoose in reply to Marz]

I thought Kitti was focussing on the UK. That mention of the US was to point out the difference between the UK and the US. That's the way I understood it, anyway.

[Marz in reply to greygoose]

hypothyroidmom.com/is-your-...

I was referring to the mention of the TSH levels in the US in the Mission Statement of ITT on Change.org. Didn't want the *experts* picking holes and saying - ah but .... It is my understanding that although the US have made recommendations for a lower upper level for the TSH - is not always implemented.

[greygoose in reply to Marz]

Yes, I know you were. And, whilst it's true that there is this big debate, I believe some reference ranges in the US, stop at 3.5. Which is where they should all stop! 10 being just rediculous. We have to have some point of reference.

You know, as we have people from all over the world on here, it would be interesting to have a poll, and see where the upper limit of the TSH is where they are. The laboratory where I always go - so I don't know about others - the upper limit is 4 (still too high!). What is it in Crete?

[Hidden]

So back to the campaign and petition 😊

If you haven't yet signed and shared make your voice count, you know what to do

change.org/p/itt-campaign-g...

[Kitti1]

The Facebook campaign team has just hit 200, good going since Wednesday. I guess because there is such an appetite for this. Another reason to grasp nettle and harness the frustration and anger felt by so many.

[pennyannie in reply to Kitti1]

Hey there, obviously I've signed but just remembered that, I think,

Dame Maggie Smith was diagnosed with Graves Disease -

sorry, but not computer literate, notice she has a facebook page -

any chance someone can crack this nut ?

[Hidden in reply to pennyannie]

pennyannie Thank you for the mention will let Kitti1 know for FB. 😊

[janey1234]

This forum always recommends the testing of antibodies, folate, Ferritin, Vit D, B12 etc in order to assist with thyroid meds' so would it be possible to include these recommendations in the campaign? I'm sure there are many out there purely on T3, T4 or combined who still suffer due to the other bits not being optimum and will continue to suffer without finding amazing forums like this to help. ☺

[Hidden in reply to janey1234]

I absolutely agree these things need to be included. First things first as this is already a mighty challenge. Included Kitti1 who has organised the petition.

Let's keep on sharing and ask them to share too 😊

[Kitti1 in reply to janey1234]

Definitely, the guidelines we will be recommending will include all the elements that play a part in achieving optimal health as a thyroid patient. Up until a few months ago, when I saw the 'Trust me I'm a Doctor' program with Michael Moseley & Dr Toft, I didn't realise I needed to search for a site like this. As I'd spent too many years believing the doctors, its not your thyroid it your head. This site has changed my life and I have a passion for reaching out to other people who are still struggling unaware of what we know. That is why street campaigning is one of the elements of our campaign.

If you'd like to come and join us at facebook.com/groups/ITTCamp...

Everyone is welcome

[amala57 in reply to Kitti1]

There also needs to be improved information and treatment for people with Graves disease. Especially pre RAI/surgery. I was never told anything about what it would be like to not have a thyroid gland. There's so much more info re Hashimotos and not so much re Graves or post RAI. Even less re TED!

[ThorpeBay24]

I tried to sign this petition but it keeps throwing me out. Saying I will receive an email but I'm not getting it. Is this happening to others?

[Hidden in reply to ThorpeBay24]

Sorry you have having problems. Keep trying in case it's a temp glitch.

[ThorpeBay24]

I am one of the lucky ones I have recently been prescribed T3 by a London specialist, the change to my life is radical. I fear ever having it removed but it is way to dangerous to self prescribe. I have to be monitored for the side effect of the drug, some of which can ver very frightening. If someone self prescribes buying drugs on the internet they are putting themselves at risk of a stroke or heart-attack and worse out of date drugs as T3 has a very important shelf life.

[Hidden in reply to ThorpeBay24]

ThorpeBay24 that is wonderful news and testament to effectiveness of T3. 😊

Please spread the message to sign the petition and share it, and pester them to keep sharing. The petition has a long way to go and we need to keep momentum up.

Edit - Just read you msg about sign in problems.

[Kitti1 in reply to ThorpeBay24]

Not at all ThorpeBay24 you just have to do its sensibly and be well informed. I self medicate and its made a massive difference to my life, as it has yours. Its really not that hard or dangerous if you are sensible. I monitor my basal body temperature and resting heart rate. I also have regular private bloods. These doctors have ruined my life, 30 years under medicated with serious consequences. I know more about how to use T3 than most GPs and endos by becoming informed and taking charge of my health. But couldn't have done it without the amazing people on here.

[ThorpeBay24]

I am so pleased for you.

My THS is 27 my life has been hell, I see my London Specialist next week . I am currently suffering massive heat problems, really serious and frightened they will remove me from T3. Will let you and others know their reaction. I'm having heart problems too, hence saying how important to be monitored. I somehow was given out of dat T3 and the reason I said be aware.

[amala57 in reply to ThorpeBay24]

ThorpeBay24

My endo suggested I take a massive dose of t3. When I got home from my appointment I double checked on this forum. I was shocked!

I started at a much lower dose than endo suggested. Honestly you are lucky if you get an endo, private or not, that knows what they are talking about.

[ThorpeBay24 in reply to amala57]

I take 20m T3 7.30 am. 20mT3 2pm, plus 25m T4 10pm. I am on trial at the moment. I see the specialist next week after four months. I lost all of my memory, and I mean all of it, my body hair, energy, nil sex life, total exhaustion. I was/am so afraid. I am now suffering massive heat problems , rapid heart beat and missing heart beat, very frightening. I somehow got out of date drugs from my local chemist, now changed, but it made me very ill. I am new to the forum, but I hope my journey will help others? Can't say anymore at he moment until I see the specialist next week in London. I feel so venerable like I don't know what I am talking about, yet I want to help others!

[Hidden in reply to ThorpeBay24]

ThorpeBay24 post another message about the problems you are experiencing so that more people see your message and can offer help. When you do they'll find it helpful if you can post any recent blood test results.

Only thst this thread might not be seen by members that can offer advice.

X😢

[ThorpeBay24 in reply to Hidden]

Next week I will have the latest results, I will be back, if not for me then to let others know of my progress or failure. I go to the hospital on Thursday.

[amala57 in reply to ThorpeBay24]

I'm not a doctor but it sounds like you are on a very high dose of t3. Are you on 65mcg per day? If so that is high. Without test results and ranges it's hard to tell. As Solstice e said best to post blood test results with ranges and quantity of tablets on a separate post. Good luck. Hope you feel better soon.

[Hidden in reply to amala57]

I misread at first but 2 x 20 T3 and 1 x 25 T4 at night. So 40 T3.

But if new to T3 I thought the idea was to start lower and increase gradually. Though I'm not on T3 just what I picked up from the forum.

[amala57]

I misread too. 40mcg t3 is still quite a lot. I had palpitations on 18. 5mcg!