Re: Guiding my G.P - advice for Wednesday

[Guest guest]

Hi,

I'm just in the process of applying for Erfa via the PCT. I thought my G.P had formally requested this, but I found out off her secretary that yes she had, in a kind of informal fashion (Why!).

The PCT have of course written back asking for a formal request from her. Also, I don't know the exact words but the PCT have asked for evidence from her and me. So I'm kind of wondering that - why is not responding to thyroxine and remaining unwell with symptoms not enough?! So me being suspicious here is wondering what they will be looking for not to agree to this. I'm initially thinking that they might be looking for symptoms that can occur with other conditions i.e the emotional stuff etc. Then they might be able to say I'm still unwell because of XYZ. I could be barking up the wrong tree here. If anyone could advise pls. I have printed off the hypo symptoms so there are some physical ones that affect me as well as lots of others.

With my G.P nice as she is, I feel that I have to do the directing and thinking ahead and not sure how to play it with the PCT. They only meet once a month if this goes to panel so feeling a tad frustrated as initally asked My G.P in Feb and the PCT still hasn't got a formal request from her.

I've not told my G.P that I've managed to get hold of a small supply of NDT, so she doesn't know I've started it. Any thoughts on this please too. I don't know how it effects the PCT process by disclosing this.

Lv

[Guest guest]

Hi

All doctors have to apply officially to their PCT to ask if they

will fund the prescription of an unlicensed medication for their patients. They

must put the reason why they have decided their patient needs an alternative

medication to the NHS prescribed medication. They need reasons from her

in writing, rather than an 'informal' request as this will have to be discussed

by their committee. She should write that you have been unable to regain

your normal health on levothyroxine alone (put down the number of years). It is

not up to the PCT to decide whether your symptoms are 'all in your head' or anything

else, that is your doctors decision and the PCT will not question her diagnosis.

Your GP should tell them that she has researched natural thyroid extract and

appreciates that it was the only medication within the NHS for all sufferers of

hypothyroidism for over 50 years before synthetic thyroxine was manufactured.

Thyroid extract has been used safely and effectively for over 100 years. She

should tell them that because levothyroxine is only one of the thyroid hormones

(and mainly inactive to boot) that she wishes to give you a trial of thyroid

extract as it contains all the thyroid hormones your body needs.

The PCT may well try to use the Statement on Armour Thyroid

written by the British Thyroid Association as an excuse to refuse to fund it.

This statement is misleading in parts, and downright incorrect in others. You

might, on your part, send a copy of the TPA rebuttal to the BTA to the PCT so

they can see the problems from both sides of the fence http://www.tpa-uk.org.uk/tpa_responds1.php

How are you getting on with the Erfa and what dose are you

taking. If this was me in your particular circumstances right now, I would

wait until after the PCT's decision on whether they will fund thyroid extract

for me before telling my doctor I have started a trial using it - but that is

just my thoughts.

Good luck

Luv - Sheila

I'm just in the process of applying for Erfa via the

PCT. I thought my G.P had formally requested this, but I found out off

her secretary that yes she had, in a kind of informal

fashion (Why!).

The PCT have of course written back asking for a formal

request from her. Also, I don't know the exact words but the PCT have

asked for evidence from her and me. So I'm kind of wondering that -

why is not responding to thyroxine and remaining unwell with symptoms not

enough?! So me being suspicious here is wondering what they will be

looking for not to agree to this. I'm initially thinking that they might

be looking for symptoms that can occur with other conditions i.e the emotional

stuff etc. Then they might be able to say I'm still unwell because of

XYZ. I could be barking up the wrong tree here. If anyone

could advise pls. I have printed off the hypo symptoms so there are some

physical ones that affect me as well as lots of others.

With my G.P nice as she is, I feel that I have to do the directing and

thinking ahead and not sure how to play it with the PCT. They only

meet once a month if this goes to panel so feeling a tad frustrated as initally

asked My G.P in Feb and the PCT still hasn't got a formal request from her.

I've not told my G.P that I've managed to get hold of a small supply of NDT,

so she doesn't know I've started it. Any thoughts on this please

too. I don't know how it effects the PCT process by disclosing this.

Lv

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19:33:00

[Guest guest]

> Hi ,

>

> I'm in the same situation, starting Erfa before contacting my GP. However I

have been to see my GP ...very lucky for me, I'm a radiographer and she was a

junior Doc years ago we worked together in A & E so she recognised me. I went

armed with Shiela's backup sheets saying that it can be prescribed. She noted

that Shiela's info was dated Nov 09, whereas her info was dated Jan 08!!! Bingo.

She made a phone call to someone (I'm sorry I should have noted who it was)

> I picked up the precription 2days later...spelt wrong (Erfra) and called

thyroxine! The GP told me a chemist that was quickest in obtaining overseas

drugs. I have waited 5 days and about to call him today to see if its been

delivered. Watch this space.

> How are you? I'm on 2 grains daily now and feeling good, no side effects.

Although I walked 11 miles on Sun and felt a hypo headache and couldn't sleep

Sun night...I'm prob hoping for too much too soon.

> Take care, Tammy

>

>

> Hi,

>

> I'm just in the process of applying for Erfa via the PCT. I thought my

> G.P had formally requested this, but I found out off her secretary that

> yes she had, in a kind of informal fashion (Why!).

>

> The PCT have of course written back asking for a formal request from

> her. Also, I don't know the exact words but the PCT have asked for

> evidence from her and me. So I'm kind of wondering that - why is not

>

[Guest guest]

Hi Sheila,

Thanks for your reply. I will fed back this info to my doctor. I have

left her all the TPA docs and I will send the two docs you are talking

about to the PCT. My G.P has never really gone into detail how my

symptoms affect me. I am going to show her the symptoms checklist, is

it worth sending the checklist to the PCT or a bad idea?

I'm on 1 1/4 of the NDT at the mo, I have had to take things a little

bit more slowly as I had to reduce from the 1/12 dose as it was too

much. I am now supported with some Nutri Adrenal products so starting

to feel a bit better on those - little bit more stamina and a bit more

productive. I am due to up my dose of NDT to 1 1/2 next week, so maybe

when my dose gets more to an optimum level I will hopefully feel much

better...

I'm glad you said to wait about disclosing about the NDT until have

heard PCT decision. I thought too, best to keep secret squirrel and it

would be better anyway when I'm on a higher dose and can say that I feel

fabulous. In the meantime, I feel really happy that I'm on the right

track and feel that NDT is definitely right for me.

Thanks for asking and for your help

Lv

>

> Hi

>

> All doctors have to apply officially to their PCT to ask if they will

fund

> the prescription of an unlicensed medication for their patients. They

must

> put the reason why they have decided their patient needs an

alternative

> medication to the NHS prescribed medication.

[Guest guest]

Tammy, your GP must write a letter to give to the pharmacist

with the prescription to let him/her know why she is prescribing thyroid

extract and not levothyroxine. All she has to say is something along the lines

that you are not regaining your health on levo-thyroxine and giving you a trial

of natural thyroid extract. She needs to write specifically Erfa 'Thyroid' -

for the prescription of hypothyroidism " on the prescription form. She

should also write a letter to the local Primary Care Trust to check they are prepared

to fund thyroid extract because it isn't licensed within the UK.

Luv - Sheila

> Hi ,

>

> I'm in the same situation, starting Erfa before contacting my GP. However

I have been to see my GP ...very lucky for me, I'm a radiographer and she was a

junior Doc years ago we worked together in A & E so she recognised me. I went

armed with Shiela's backup sheets saying that it can be prescribed. She noted

that Shiela's info was dated Nov 09, whereas her info was dated Jan 08!!!

Bingo. She made a phone call to someone (I'm sorry I should have noted who it

was)

> I picked up the precription 2days later...spelt wrong (Erfra) and called

thyroxine! The GP told me a chemist that was quickest in obtaining overseas

drugs. I have waited 5 days and about to call him today to see if its been

delivered. Watch this space.

> How are you? I'm on 2 grains daily now and feeling good, no side effects.

Although I walked 11 miles on Sun and felt a hypo headache and couldn't sleep

Sun night...I'm prob hoping for too much too soon.

> Take care, Tammy

>

>

> Hi,

>

> I'm just in the process of applying for Erfa via the PCT. I thought my

> G.P had formally requested this, but I found out off her secretary that

> yes she had, in a kind of informal fashion (Why!).

>

> The PCT have of course written back asking for a formal request from

> her. Also, I don't know the exact words but the PCT have asked for

> evidence from her and me. So I'm kind of wondering that - why is not

>

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found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.437 / Virus Database: 271.1.1/2762 - Release Date: 03/22/10

19:44:00

[Guest guest]

Just give the checklist to your GP. If she comes back to you and

tells you that symptoms of hypothyroidism are non=specific, then tell her that

groups of these symptoms can be quite specific. Baisier, WV, Hertoghe, J., Beekhaut, W., Thyroid

Insufficiency? Is Thyroxine the Only Valuable Drug?, J Nutr and Environ Med,

September 2001, 11(3):159-166.

Also, give a list of the 'SIGNS' too. A slowed Achilles tendon

reflex is SPECIFIC to hypothyroidism.

Luv - Sheila

I'm glad you said to wait about disclosing about the NDT until have

heard PCT decision. I thought too, best to keep secret squirrel and it

would be better anyway when I'm on a higher dose and can say that I feel

fabulous. In the meantime, I feel really happy that I'm on the right

track and feel that NDT is definitely right for me.

Thanks for asking and for your help

Lv

>

> Hi

>

> All doctors have to apply officially to their PCT to ask if they will

fund

> the prescription of an unlicensed medication for their patients. They

must

> put the reason why they have decided their patient needs an

alternative

> medication to the NHS prescribed medication.

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.437 / Virus Database: 271.1.1/2762 - Release Date: 03/22/10

19:44:00

[Guest guest]

ok that's great, I have printed everything off that I need, so fully prepared!

Thank you again

Lv >> Just give the checklist to your GP. If she comes back to you and tells you> that symptoms of hypothyroidism are non=specific, then tell her that groups> of these symptoms can be quite specific> >

> > >

[Guest guest]

Hi Tammy,

You lucky thing is it a case of not what you know but who you know. I've been alright thanks but my dose is still quite low 1 1/4 as having to take it a bit more slowly due to the little fellas (adrenals). Having said that I did have a horrendous night last, getting off to sleep is often a problem but last night took the biscuit - 8am in the morning. Its rarely that bad but having my adrenal products too late didn't help things, silly me.

11 miles is brill perhaps you over did it a bit though if you had a headache and couldn't sleep. It could have been due to another reason though

bye for now

> > > Hi ,> >> > I'm in the same situation, starting Erfa before contacting my GP. However> I have been to see my GP ...very lucky for me, I'm a radiographer and she> was a junior Doc years ago we worked together in A & E so she recognised me. I> went armed with Shiela's backup sheets saying that it can be prescribed. She> noted that Shiela's info was dated Nov 09, whereas her info was dated Jan> 08!!! Bingo. She made a phone call to someone (I'm sorry I should have noted> who it was)>