Re: MAIL ON SUNDAY - REVIEW SECTION

[Guest guest]

Hi Sheila

Congratulations on getting the piece in the Mail on Sunday. For a non sufferer, I think the journalist has explained the problem very well.

Have you had a chance to email the group with a link to the survey?

Kind regards

From: SheilaT <sheila@...>thyroid treatment Sent: Sunday, 3 July 2011, 9:07Subject: MAIL ON SUNDAY - REVIEW SECTION

Dear MemberTHYROID ARTICLE - TPA MEMBER'S STORYAt last, the promised article has been published in the Mail on Sundaytoday. You will find this in the Review Magazine on Page 23. It startsout with Gail's story (one of our members) and then goes on to talkabout Dr Peatfield (with some very old information that should have beenupdated) and what he has to say about the lack of diagnosis andtreatment for those with symptoms. The article gets in quite a few ofthe points I made thankfully but there could have been more, but we haveto be grateful for the points that have been published. Dr MarkVanderpump of BTA states that yes, there are approximately 5% of peoplewho don't get well on levothyroxine-only and that they need to find outwhy t his is, but then talks about the 12 studies that show that T4/T3doesn't work any better than T3 and that T3 is dangerous, but I haveonly had this article

read out over the phone to me by Marie, so don'tknow of the details.TPA gets an honourable mention.I sincerely hope that after you have read the article, you will help ourcause by writing to the Editor of the Mail on Sunday, either online orvia snail mail and put your story across and tell him what you thinkabout the way you have been treated and also about TPA to help put us onthe map for those people who don't know about us and who we could help.The article sadly did NOT mention the 1032 counterexamples alreadylisted in our Register who remained ill on T4 only, yet whose symptomswere mitigated or went away completely when they started taking someform of T3, but they did mention that over 250,000 citizens in the UKare being left to suffer.It's about time that members of certain thyroid associations were madeto declare their interests

.....Sheila

[Guest guest]

Dear ShielaI'm running desperately low on T3 and dont know where I can get it from JeanOn Sun, Jul 3, 2011 at 9:07 AM, SheilaT <sheila@...> wrote:

 

Dear Member

THYROID ARTICLE - TPA MEMBER'S STORY

At last, the promised article has been published in the Mail on Sunday

today. You will find this in the Review Magazine on Page 23. It starts

out with Gail's story (one of our members) and then goes on to talk

about Dr Peatfield (with some very old information that should have been

updated) and what he has to say about the lack of diagnosis and

treatment for those with symptoms. The article gets in quite a few of

the points I made thankfully but there could have been more, but we have

to be grateful for the points that have been published. Dr Mark

Vanderpump of BTA states that yes, there are approximately 5% of people

who don't get well on levothyroxine-only and that they need to find out

why t his is, but then talks about the 12 studies that show that T4/T3

doesn't work any better than T3 and that T3 is dangerous, but I have

only had this article read out over the phone to me by Marie, so don't

know of the details.

TPA gets an honourable mention.

I sincerely hope that after you have read the article, you will help our

cause by writing to the Editor of the Mail on Sunday, either online or

via snail mail and put your story across and tell him what you think

about the way you have been treated and also about TPA to help put us on

the map for those people who don't know about us and who we could help.

The article sadly did NOT mention the 1032 counterexamples already

listed in our Register who remained ill on T4 only, yet whose symptoms

were mitigated or went away completely when they started taking some

form of T3, but they did mention that over 250,000 citizens in the UK

are being left to suffer.

It's about time that members of certain thyroid associations were made

to declare their interests ....

Sheila

[Guest guest]

The article is on the website now so if anyone missed the paper they can read it

here: http://www.tpa-uk.org.uk/mail_on_sunday.pdf

x

>

>

> Dear Member

>

> THYROID ARTICLE - TPA MEMBER'S STORY

>

> At last, the promised article has been published in the Mail on Sunday

> today.

[Guest guest]

Thank you for this , really helpful to forward on

JxOn Tue, Jul 5, 2011 at 12:50 AM, Galathea <galathea@...> wrote:

 

The article is on the website now so if anyone missed the paper they can read it here: http://www.tpa-uk.org.uk/mail_on_sunday.pdf

x

[Guest guest]

Hi if you are already taking T3, where do you get it from

at the moment.

Is this supplied by your GP. Have you increased the dose

yourself lately so you are running out of tablets before your 28 days supply is

up? I would telephone your GP and speak with him (or endocrinologist) and tell

him of your predicament.

Tell us a little about your diagnosis and symptoms and how long

you have been taking T3 and what dose T3 you are taking right now. If you still

have some T3 available, can you cut your dose down slightly to enable you to

spread it through the days until you manage to get a replacement. Do you have

any levothyroxine available, if so, and you have completely run out of T3, if

this was me, I would go back to taking T4 in the interim. It would help also if

you take some form of adrenal support and if you don't take Selenium 200mcgs

already, it would help in the conversion of T4 into the active T3.

It is always best to keep an eye on your stock of thyroid

hormone replacement so you don't run out, and hopefully, this might be a lesson

learned for the future.

Let us know what your GP says and good luck.

Luv - Sheila

Dear Shiela

I'm running desperately low on T3 and dont know where I can get it from

Jean

On Sun, Jul 3, 2011 at 9:07 AM, SheilaT <sheila@...> wrote:

[Guest guest]

You look at younger than 73 Sheila i would never of guessed and keep up the

good work, i showed this story to my dad and his gf and they were both very

interested, and it helped them understand why i went to see Dr P and why i was

so angry at my local gp.

Steve

> THYROID ARTICLE - TPA MEMBER'S STORY

>

[Guest guest]

Hi , thought I should let you know - there seems to be a problem with legibility of this pdf. Sorry - it could be my laptop but I doubt it somehow. What's happening all the text is converted to a long grey/black line so it can't be read. Suggest it may be to do with how the pdf was made. All best, Alison>> The article is on the website now so if anyone missed the paper they can read it here: http://www.tpa-uk.org.uk/mail_on_sunday.pdf>

[Guest guest]

I am delighted that this article helped your Dad and GF

understand your predicament Steve, this means so much. I have heard this from

quite a few people. I am feeling 73 today, and yesterday and Sunday as there

have been so many new members coming here, but I have received masses of Emails

sent direct to me from the web site and I can hardly keep up. This shows even

more what a terrible plight the NHS have put us in and there seems little

willingness at the moment to get us out and make us well, but we will keep on.

At least, they now know we are out here watching them, and speaking up when we

know how badly we are being treated.

luv - Sheila

You look at younger than 73 Sheila i would

never of guessed and keep up the good work, i showed this story to my dad

and his gf and they were both very interested, and it helped them understand

why i went to see Dr P and why i was so angry at my local gp.

Steve

> THYROID ARTICLE - TPA MEMBER'S STORY

>

[Guest guest]

Hi Emma,

This article is on the TPA website as a pdf, if anyone wants to print it

out.....

http://www.tpa-uk.org.uk

and

http://www.tpa-uk.org.uk/mail_on_sunday.pdf

x

> >

> > They always use Vanderpump because I understand they appointed him BTA press

> > officer - they really shouldn't, he gives out so much misleading and

> > incorrect information it is quite frightening, but then, they have a habit

> > of keep kicking themselves in the foot. When will they learn.

> >

> > Luv - Sheila

> >

> > Fantastic, Sheila. They even put TPAs website address at the end of the

> > article. You may get inundated with new members.

> >

> > I believe Dr V mentioned in the article (who my endo wanted me to see but I

> > refused) has vested interest in prescribing T4. Not only is he a member of

> > the BTA but has written books on thyroid disease (one of which you have,

> > Sheila). I shall try and do some digging and see what I come up with.

> >

> > Love

> > Jacquie

> > PS: It eludes me why they ALWAYS get him to respond to anything to do with

> > the media.

> >

>

[Guest guest]

works fine on mine

what version of adobe reader are you on?

>

> Hi , thought I should let you know - there seems to be a problem

> with legibility of this pdf. Sorry - it could be my laptop but I doubt

> it somehow.

[Guest guest]

"FOR TWELVE YEARS I WAS A VICTIM OF "THE GREAT THYROID SCANDAL"

Barbour

ok this was my offering...a letter to the MOS in reference to the above article.

am writing in response to the recent article you printed on the above subject.

Dear Editor,

I am hypothyroid. According to the TSH blood test, taken over 30years, I am not hypothyroid. I had a myriad of disabling, embarrasing and dangerous symptoms, I have a long family history of the disease and a long family history of heart disease (very much associated with hypothyroidism), and I have clinical signs too. Further, I now take high doses of thyroid hormone and the result is I now feel fantastic.

In the past I was fobbed off by a number of NHS doctors. I was diagnosed (incorrectly) with a number of different disorders and further and more importantly I was given wrong treatments, from which I now suffer side effects.

The attitude of the medical profession on this matter is outrageous. It causes us patients a great deal of distress, disability and pain and not least heartache as our loved ones are on the receiving end of this. This situation has been known to result in divorce and suicide. This issue is an important one.

Hypothyroidism affects a large percentage of the population but it is rarely diagnosed. We are often told its our age, its the menopause, its in our mind, we want to be ill, we are mentally ill, or your just plain neurotic. How insulting is that? Eventually I was given the diagnosis of guess what? Yup thats right; M.E. (thats always a good one to fall back on isnt it?), one doctor during a consultation told me I should be in a psychiatric unit purely because of this 'diagnosis'; that all people with M.E. are mad. Those were his words! I used to work as Director of Nursing and Midwifery, I think they would have spotted my mental disorder if that were the case dont you?

I have never accepted that or any other spurious diagnosis...I knew all the time I was hypothyroid. If I wasnt hypothyroid my body would not tolerate the amount of thyroid hormone supplement I have now taken twice daily for the last 6years. Furthermore, my symptoms would remain, instead I am now almost symptom free. The only symptom remaining is due to Statin drug side effects!

If Prime Minister Cameron wishes to save money this surely is one way of doing it. Think of all the revenue lost through people being unable to work, instead claiming benefits and placing demands on expensive medical and other services when theri health crisis occurs, because for sure it will; heart attacks, strokes, suicide, alzheimers, autoimmune dysfunction, surgery (gall bladder problems etc), recurring infections allergies and so on.

Yours faithfully,

Sally Jarvis

Hypothyroid SUFFERER

[Guest guest]

Sally,

You should print this out and send it off to Lansley/No 10 - with a copy of the Mail on Sunday article. Or Sheila how about everyone writes a one pager like Sally and we collate them in a book and send them off en masse.

Best wishes

Mandy

[Guest guest]

This is what we have asked everybody to do Mandy. This is SO

important. I do, however, need somebody to take off this load from my shoulders

and if anybody would put their name forward as the person who would be happy to

collect all such 'success stories' then I will send a message out asking all

those members who have regained their optimal health after being so let down by

the NHS, to pass their story on to them.

Luv - Sheila

Sally,

You

should print this out and send it off to Lansley/No 10 - with a copy of

the Mail on Sunday article. Or Sheila how about everyone writes a one

pager like Sally and we collate them in a book and send them off en

masse.

Best

wishes

Mandy

[Guest guest]

Hi Mandy,

I recently wrote to The House and just got a reply in respect of thyroid problems and Dr Myhill and Dr Skinner etc......a bland reply three lines....but enclosing blah blah from the GMC!!!! so I am just in the process of writing my (very long) reply...including the MOS article amongst others....

That sounds a good idea.....has everyone signed the World register re Dr Skinner set up too? Sally

The more the better lets bombard them and they cant ignor us. Sally xxx

You should print this out and send it off to Lansley/No 10 - with a copy of the Mail on Sunday article. Or Sheila how about everyone writes a one pager like Sally and we collate them in a book and send them off en masse.

Best wishes

Mandy

[Guest guest]

This is a fantastic idea, Mandy. I'd been thinking it would be good to have a

section of successful case histories on the website . Journalists could be

referred to it. And people trying to persuade their doctors could also use it

maybe.

Debbie

how about everyone writes a

> one pager like Sally and we collate them in a book and send them off en

> masse.

>

> Best wishes

>

> Mandy

>

[Guest guest]

Hi Sheila

I'd be happy to collect the success stories if you've no one else in line. It

depends how quickly you want them doing! I have something else I'm working on,

so it might not be the speedist delivery as I think they'll need editing to make

them a similar length and format for busy MPs/journalists to read quickly.

Best wishes

Debbie

I

> do, however, need somebody to take off this load from my shoulders and if

> anybody would put their name forward as the person who would be happy to

> collect all such 'success stories'

>

> Luv - Sheila

>

>

>

>

>

> Sally,

>

>

>

> You should print this out and send it off to Lansley/No 10 - with a

> copy of the Mail on Sunday article. Or Sheila how about everyone writes a

> one pager like Sally and we collate them in a book and send them off en

> masse.

>

>

>

> Best wishes

>

>

>

> Mandy

>

[Guest guest]

Mandy, excuse me for being off topic, but i wanted to wish you well for your new

job

I was off for a year a couple of years ago and I found it hard to return to

work so i know what a big step it can be

i was worried how i was going to cope but i did manage

good luck!

chris

>

> Hi Debbie,

>

I would have offered to do it but I am

> just about to start after 3 years away from work a new job so I am

> absolutely panicked with things to do before I start.

>

[Guest guest]

Oh thanks - I am dreading it but after having temped for over 300 companies in my career over 30 odd years I daresay once I get back into it I will feel like I have never been away.

Will be nice to wear nice clothes again having lost 2 stone on the HCG diet !!! Fed up of slopping around at home in trackies and it will be nice to feel a lot healthier than when I left in 2007.

Thanks again for your good wishes.

Best wishes

Mandy

[Guest guest]

Can I suggest if everyone who wishes their story to be told writes their story....bu further writes a very short abstract of what their story is....so that the whole story doesnt have to be read when someone is having a cursory glance through the 'book'. xx

Hi Debbie,

This needs to be done very carefully not in haste - we need to have a one pager so that we keep it punchy - I would have offered to do it but I am just about to start after 3 years away from work a new job so I am absolutely panicked with things to do before I start.

But I would be interested in seeing them all before they go off and I would be prepared to get them printed and bound so we can get them to Lansley.

So let's have the stories - I think we should have good ones and bad ones - but separately - i.e one page on bad one page on good

Best wishes

Mandy

[Guest guest]

Hi Mandy

I’m not sure if I’m doing it yet. There may be other volunteers! But I very

much agree that it needs to be done carefully and kept punchy . That's why I

didn't want to do it if it needed to be done quickly as I know it would take me

some time.

I thought maybe it would help if we had a loose form for people to fill in or a

list of headings. That way we would get similar information from everyone and

it would make it easier to create an easy to read format for the case histories.

MPs/journalists are only going to skim read so I think it's got to look as

professional as possible, be accessible at a glance, well laid-out, as well as

informative.

That's great that you would be prepared to do the binding etc as, if it is me

that does it, that's the bit that would be a problem for me. I'm not an IT

genius either so someone else may be able to enhance the layout when I've done

my bit. And it would be great to have you alongside to run through things with,

for input and checking for errors.

Good luck with the new job. You sound like a success story. I’m a way off

that myself but hopeful.

Best wishes

Debbie

>

> Hi Debbie,

>

> This needs to be done very carefully not in haste - we need to have a one

> .

>

> So let's have the stories - I think we should have good ones and bad ones -

> but separately - i.e one page on bad one page on good

-

>

[Guest guest]

Can I also remind people of the Dr Gordon Skinner World Register. I gave the link to the page previously, if you dont have it just use yur search engine.........Let use what we have as well as devising something new, but I am with you all the way. Sally xx

I thought maybe it would help if we had a loose form for people to fill in or a list of headings. That way we would get similar information from everyone and it would make it easier to create an easy to read format for the case histories. MPs/journalists are only going to skim read so I think it's got to look as professional as possible, be accessible at a glance, well laid-out, as well as informative.That's great that you would be prepared to do the binding etc as, if it is me that does it, that's the bit that would be a problem for me. I'm not an IT genius either so someone else may be able to enhance the layout when I've done my bit. And it would be great to have you alongside to run through things with, for input and checking for errors.

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[Guest guest]

congratulations on your new job...very well done and inspiring

like you i aslo did temp and or contract work for 30 odd years ...i realise now

i have always had bad health from untreated hashimoto's...i took in to my being

that i was lazy and bad because i couldn't guarantee i'd be able to make it

through a whole month without being ill ...so i thought if i was paid by the

hour it would force me to go to work because no work = no pay ....i felt so

guilty about being ill. my adrenals took a huge hammering of course and then i

mistakenly tried to prop up the failing system with all sorts of interesting

substances ...i am sure i am not alone in this story of decades of ignorance

about how our bodies work!

you, quite clearly, have been through many hoops but you have arrived at the

other side with valuable knowledge and insights derived from extreme

experiences...thank you for all your information and very best wishes for your

new job

trish

>

> Oh thanks - I am dreading it but after having temped for over 300

> companies in my career over 30 odd years I daresay once I get back into it I

> will feel like I have never been away.

[Guest guest]

Hi Sally

We are thinking along the same lines as I woke up this morning thinking there

needed to be a short summary at the head of each case history. Maybe I'm

reading emails in my sleep... Best wishes, Debbie

>

>

>

>

> Can I suggest if everyone who wishes their story to be told writes their

story....bu further writes a very short abstract of what their story is....so

that the whole story doesnt have to be read when someone is having a cursory

glance through the 'book'.  xx

>

>  

>

>  

>  

>

[Guest guest]

tehe...I would buy th latest copy of HELLO mag...might get you to sleep again quicker!!!! tehe.

Great midns they say! ;_0 xxx

We are thinking along the same lines as I woke up this morning thinking there needed to be a short summary at the head of each case history. Maybe I'm reading emails in my sleep... Best wishes, Debbie >> > > > Can I suggest if everyone who wishes their story to be told writes their story....bu further writes a very short abstract of what their story is....so that the whole story doesnt have to be read when someone is having a cursory glance through the 'book'. xx> >  > >  >  >