Re: Re: WITCH HUNT - The New Heretics - A WARNING

[Guest guest]

Sheila

I cant believe you are even thinking about going back on Levo, dont do it, why make yourself ill? You know it will make you ill, how can they do this?

Can you not continue to take it and buy it privately?

This is truely disgusting and quite frightening

Oh my God Sheila, This is truly frightening.Thinking of youLeah xxx

[Guest guest]

Can you

find me any references to this particular research Louise. This is the sort of

information I need for my rebuttal.

Luv -

Sheila

Also the BTA ect can't be unaware of Colin Dayans research? I believe

it was about genetic mutations in one of the deiodinase enzymes?

Surely this proves that some people can't get better without some

direct T3? In other words that's why the thyroid gland functions the

way it does (giving some T3 directly) to allow for genetic differences

in the peripheral metabolism of thyroid hormones?

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[Guest guest]

I wonder what happened to the Hippocratic oath- first do no harm.

Subject: Re: WITCH HUNT - The New Heretics - A

WARNING

This is terrible. I don't know what to say. The state of medicine in

this country is a disgrace.

Love to you Sheila and hoping you'll be ok.

------------------------------------

TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

[Guest guest]

Hi ,

The problem is getting a big enough media person to actually broadcast

or print what it really going on- Sheila has had contact will several

journalists who initially seem keen, but always something happens and the story

is withdrawn. How do we actually get the word out big time.

I understand diabetics managed to get animal insulin restated, who coordinated

that successful campaign and could they give us some pointers.

Subject:

Re: WITCH HUNT - The New Heretics - A WARNING

Clinical trials for

Armour vs Thyroxine would be prohibitively expensive , I believe .... costs

would be in the many hundreds of thousands, probably even Millions of

pounds.

Still, there is a

positive side to all this. " They " must be scared that Armour is

becoming too popular with their patients, and they want to squash it before the

snowball becomes an avalanche - which means, word has got around

that there is an alternative treatment, and they are scared. As more and more

patients become disgruntled with a drug that does not work, eventually

something will have to give. Success speaks louder than words. So we'll just

keep spreading the word. The media is a most powerful tool - and

possibly our best weapon. Eventually, when there is enough

noise, somebody will take note. As so rightly said ... it's not over

until the fat lady sings ;o)

[Guest guest]

Hi Miriam,

But then they will say that conversion problems don't exist.

Subject: Re: WITCH HUNT - The New Heretics - A

WARNING

If your doctor agrees that you have problems converting T4 to T3 then

surely this doesn't apply?

Miriam

------------------------------------

TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

[Guest guest]

Not

sure , because they have the argument that Armour isn't licensed and

doctors are putting their livelihood at risk by prescribing it in the first

place as their medical insurance doesn't cover them - however, the facts are

that the information the BTA and RCP et all is misleading and in parts,

incorrect and they have backed up nothing with medical science. I don't qualify

for legal aid unfortunately - and I'm damned if these devils are going to take

away what little money I have in fighting them in the same way they have taken

away my Armour.

Luv -

Sheila

Does the withdrawal of your medication open any legal

doors. Can you or someone on low income get legal aid to challenge

the withdrawal of the medication that you know is right for you.

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[Guest guest]

Hi

Things ARE going on in the background, but

the one thing I have learned is that you keep whatever you are doing close to

your chest. I have had one or two plans of action scuppered by 'going public'

on the forum. However, having said that, if anybody has any connections

anywhere, please contact me privately, as somebody has already done today. The

politics behind all of this are huge and we need to be seen to be doing

everything in as a correct way as we can.

We also need to be writing to the owners of

every UK and world-wide thyroid patients Internet support web sites and forums

and as many local thyroid groups as we can to gather their support. If there is

anybody out there who is willing to get their address and contact details

(preferably email addresses) and list these please let me know.

Luv - Sheila

I have no doubt that our " thyroid story "

is potentially capable of achieving a public outrage too....

But what would one have to do to get such presenters on board for

us, who won't jump ship for fear of repercussions ?? Guess

you'd need connections in very high places and it would help if

some much loved family members of TV bosses and/or

politicians or celebrities were to suffer badly from unsatisfactorily

treated thyroid disease and were prepared to make their feelings heard.

We've got nearly 950 members.... there must be some

among us with connections in high enough places ?

[Guest guest]

Sheila,

I have already told my Practice Nurse that if anything happens to me or my father a full postmortem is on the cards and instructions have been left to sue.

My father has had 2 blood tests in the last week and he hadn't had any for ages - his mother died of Myxodema and he has Parkinson's (I think it could be Graves as you can get the same tremor).

I think Human Rights is the only way to go now and the fact that we are not treated equally, as most GPs check for Hypothyroid and when bloods are normal, they don't look for anything else, I have asked why they have stopped looking if they are so sure its not thyroid, they should be looking for something else.

I was told my white blood count has been out of range since 2001 - top of range is 10 and I twitter around the 13 but nobody had looked into it further because its normal for me - I said normally ill not normally healthy.

I'm hoping to work with the Norfolk Coalition for Disabled People, there will be hundreds more contacts for us there as West Norfolk especially has a dreadful Endoprat reputation.

Will let you know how things go, you're not alone, there are a few of us working to the same end, but thank you so much for what you do and if you think that I can help with anything please let me know. I think a demo of hobbling heavies would be wonderful - sign me up!!

Luv

Jane

Jane

RE: Re: WITCH HUNT - The New Heretics - A WARNING

Hi

Things ARE going on in the background, but the one thing I have learned is that you keep whatever you are doing close to your chest. I have had one or two plans of action scuppered by 'going public' on the forum. However, having said that, if anybody has any connections anywhere, please contact me privately, as somebody has already done today. The politics behind all of this are huge and we need to be seen to be doing everything in as a correct way as we can.

We also need to be writing to the owners of every UK and world-wide thyroid patients Internet support web sites and forums and as many local thyroid groups as we can to gather their support. If there is anybody out there who is willing to get their address and contact details (preferably email addresses) and list these please let me know.

Luv - Sheila

We've got nearly 950 members.... there must be some among us with connections in high enough places ?

[Guest guest]

Sheila,

Are there any research projects going on into biochemicallly normal thyroid patients at present?? And if not why not? Another question for the GMC, or perhaps we could ask the Pharma Dears to sponsor, they might be able to come up with another alternative, or rehash Armour and sell it as their own. If they paid for it to be licensed, they could probably sell it under their brand name.

Jane

RE: Re: WITCH HUNT - The New Heretics - A WARNING

Hi

Things ARE going on in the background, but the one thing I have learned is that you keep whatever you are doing close to your chest. I have had one or two plans of action scuppered by 'going public' on the forum. However, having said that, if anybody has any connections anywhere, please contact me privately, as somebody has already done today. The politics behind all of this are huge and we need to be seen to be doing everything in as a correct way as we can.

We also need to be writing to the owners of every UK and world-wide thyroid patients Internet support web sites and forums and as many local thyroid groups as we can to gather their support. If there is anybody out there who is willing to get their address and contact details (preferably email addresses) and list these please let me know.

Luv - Sheila

?

[Guest guest]

Hi Sheila,

I’ll do that for online groups online if you want.

Subject: RE:

Re: WITCH HUNT - The New Heretics - A WARNING

We also need to be writing to the

owners of every UK and world-wide thyroid patients Internet support web sites

and forums and as many local thyroid groups as we can to gather their support.

If there is anybody out there who is willing to get their address and contact

details (preferably email addresses) and list these please let me know.

Luv - Sheila

[Guest guest]

Oh

- that would be wonderful. Thank you so much. I sincerely hope that the

UK thyroid websites and forums will join forces with us on this very important

occasion. We must be seen to be working together - as says.

Luv -

Sheila

Hi Sheila,

I’ll do that for online groups online if you want.

[Guest guest]

I qualify for legal aid Sheila. The only way for me is up - ring me 01366 347962.

Jane

RE: Re: WITCH HUNT - The New Heretics - A WARNING

Not sure , because they have the argument that Armour isn't licensed and doctors are putting their livelihood at risk by prescribing it in the first place as their medical insurance doesn't cover them - however, the facts are that the information the BTA and RCP et all is misleading and in parts, incorrect and they have backed up nothing with medical science. I don't qualify for legal aid unfortunately - and I'm damned if these devils are going to take away what little money I have in fighting them in the same way they have taken away my Armour.

Luv - Sheila

Does the withdrawal of your medication open any legal doors. Can you or someone on low income get legal aid to challenge the withdrawal of the medication that you know is right for you.

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[Guest guest]

Diabetics do not have the choice of what insulin they can have.

When my blood sugar was very unstable the diabetes nurse said I would be better on another type of insulin but the endo had to give the OK. He would not and I stayed ill. Fortunately he left and a new endo came and he immediately changed my insulin. Ever since my blood sugar has been stable and well controlled.

About six months ago I mentioned another new thing. He looked at all the diabetic medication I was taking and said yes, he can justify the expense of it.

So if I was not taking so much medication, regardless of whether it would benefit me or not, if he could not justify the expense I would not get it.

Actually after researching it and the side effects etc. I decided not to go for it anyway. But it shows decisions are not necessarily clinical.

Lilian

[Guest guest]

…but

have the NHS stopped the treatment that gave you back your health and put you

back onto the synthetic treatment that made you so ill Jane.

I qualify for legal aid Sheila. The

only way for me is up - ring me 01366 347962.

Jane

[Guest guest]

No - they have just let me drift on without a diagnosis - I'm biochemically normal - not.

See your point, but surely I could do the Human Rights thing?

RE: Re: WITCH HUNT - The New Heretics - A WARNING

…but have the NHS stopped the treatment that gave you back your health and put you back onto the synthetic treatment that made you so ill Jane.

I qualify for legal aid Sheila. The only way for me is up - ring me 01366 347962.

Jane

[Guest guest]

Thats the most sensible idea yet!

Jane

Re: WITCH HUNT - The New Heretics - A WARNING

Or perhaps we should lobby Forest Pharma and get them to license Armour in the UK? Leah x>> Sheila,> Another question for the GMC, or perhaps we could ask the Pharma Dears to sponsor, they might be able to come up with another alternative, or rehash Armour and sell it as their own. If they paid for it to be licensed, they could probably sell it under their brand name.> >

[Guest guest]

Hi Jane,

Yes! Threaten to sit on ‘em1

Subject: Re:

Re: WITCH HUNT - The New Heretics - A WARNING

Sheila,

I think a demo of hobbling heavies

would be wonderful - sign me up!!

Luv

Jane

[Guest guest]

Hi Miriam,

I think why porcine insulin was reinstated was the higher risk

of death actually attributable, but our slow lingering early deaths will

be recorded as due to heart failure obesity etc and not attributed to

long years of inadequate thyroid care or even lack of diagnosis.

Subject: Re: WITCH HUNT - The New Heretics - A

WARNING

I have just been reading " The Rise and Fall of Modern Medicine " by

Le Fanu where there is another example. He tells the story of

the development of genetically engineered " human " insulin (pages

289-290). Inexplicably " many diabetics found 'human' insulin to

provide poorer control of their diabetes than the animal-based form

they had used before. " It even caused some deaths because there

weren't many premonitory signs of hypo before slipping into a coma.

So a supposedly superior product had some unexplained drawbacks.

Miriam

------------------------------------

TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

[Guest guest]

Hi

Jane - yes, certainly you could do your Human Rights thing as an individual. Once

we have sorted where our complaint should go in the first instance, and we have

posted it off, I will upload it to the FILES and to our website, so any member

can look to see what specific points we are complaining about.

Luv -

Sheila

No - they have just let me drift on without a

diagnosis - I'm biochemically normal - not.

See your point, but surely I could do the

Human Rights thing?

…but have the NHS stopped the treatment that gave you

back your health and put you back onto the synthetic treatment that made you so

ill Jane.

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[Guest guest]

Been

tried before - they won't do it. They do very well without licensing it in the

UK - they have the rest of the world….

Luv -

Sheila

Or perhaps we should lobby Forest Pharma and get them

to license Armour

in the UK?

Leah x

[Guest guest]

Hi Leah,

They won't because of the cost-we've already asked them- they

are quite satisfied by UK sales- though these will drop slightly when

those getting NHS prescriptions are no longer doing so if this goes

through.

Maybe we could work on one of the generics, but with this costing

millions I won't hold my breath.

Subject: Re: WITCH HUNT - The New Heretics - A

WARNING

Or perhaps we should lobby Forest Pharma and get them to license Armour

in the UK?

Leah x

>

------------------------------------

TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

[Guest guest]

I think why porcine insulin was reinstated was the higher riskof death actually attributable, but our slow lingering early deaths willbe recorded as due to heart failure obesity etc and not attributed tolong years of inadequate thyroid care or even lack of diagnosis.<<<<<

However, if insurance companies are not insuring someone (as per Sheila's message) who is hypothyroid, then they are putting it on record that there is a correlation. Another aspect, of course, is people will not want to be diagnosed with it if they are not going to be given insurance.

Now is this part of the overall picture that is emerging.

Lilian

[Guest guest]

Hi Lilian,

This is an interesting angle-

maybe the insurance companies know something the docs don’t ( or refuse to see).

our slow lingering early

deaths will

be recorded as due to heart failure obesity etc and not attributed to

long years of inadequate thyroid care or even lack of

diagnosis.<<<<<

However, if insurance companies are not insuring someone (as per

Sheila's message) who is hypothyroid, then they are putting it on record

that there is a correlation. Another aspect, of course,

is people will not want to be diagnosed with it if they are not going to be

given insurance.

Now is this part of the overall picture that is

emerging.

Lilian