Re: friend with ME/Fibromyalgia - advice please

[Guest guest]

Hi Nicola

Tell Normal that it might be better if he writes a letter to his

doctor. Doctors DO pay more attention to the written word. First, he should

tell her that he is tired of being given a diagnosis of ME and fibromyalgia

without being given a reason why he is suffering with these or any treatment

that will help him regain his normal health, and that he is now determined to

do whatever he can to get back his optimal health and hope that his doctor will

work with him.

He should list all of his symptoms and signs, and he can check

these against those in our web site under 'Hypothyroidism' www.tpa-uk.org.uk

He should take his temperature for 4 or 5 mornings before

getting out of bed and list these too if they are 97.8 degrees F or 36.6

degrees C (or less).

Next, he should list the names of any members of his family who

has a thyroid or autoimmune disease (if there are any)

Next, he should list the blood tests he wants, i.e. TSH, free

T4, free T3 and TPO and TgAB (thyroid antibodies). He should also ask for his

levels of iron, transferrin saturation%, ferritin, vitamin B12, vitamin D3,

magnesium, folate, copper and zinc to be tested and ask that the results be

made available to him when they are returned, together with the reference range

for each of the tests done. (You could post them here on the forum so we can

help with their interpretation).He should tell the GP in his letter that it is

well documented that if any of these levels are low, no amount of thyroid

hormone, not even his own, can be fully utilised at the cellular level. We have

references he could cite should the doctor try to tell him there is no

association between these and low thyroid.

He should mention that both FM and ME have been found to be

symptoms of hypothyroidism and these are treated with the active thyroid

hormone T3, and that therefore, he now wishes to be referred to an

endocrinologist of his choice. (I will send you a list of such doctors recommended

by our members who will prescribe T3 as many NHS doctors have no experience of

it).

Next, he should ask for his letter of requests to be placed into

his medical notes and he should keep a copy for himself.

Look at Dr Lowe's web site where you will find lots of

information http://www.drlowe.com/geninfo/explain.htm

I hope this helps.

My friend Norman has been ill for nearly 20

years. He was diagnosed as having ME and Fibromyalgia and has had all the

familiar symptoms including extreme fatigue, pain, trouble sleeping, being

bedridden for long periods of time. I recently discovered that his late mother

had a thyroid condition and that Norman himself had been tested for low thyroid

a few years ago, but the results came back 'normal'. I told him all about the

great work of TPA and about the link between thyroid and so-called ME/Fibro.

So the bottom line is that Norman is going to go back to his GP and have his

thyroid retested. My first question is: which blood tests should he request?

Also, if anyone has any references to documents explaining the links between

low thyroid and ME/Fibro, please pass them on to me, so that I can print them

off for Norman and his wife to read. Many thanks!

As always, I appreciate any help you may be able to provide.

Nicola

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[Guest guest]

Hi,

Can I put my oar in - also I tend to copy the Practice Manager into all letters

sent to GP - a third party at the surgery is always a good one - the GP is less

likely to drag their feet!

Good luck

Stacey

[Guest guest]

Hi Sheila

Many thanks for your response to my message. I will pass all of this info to

Norman and take it from there. I really appreciate your help, as always.

Best wishes,

Nicola

>

>

> Hi Nicola

>

> Tell Normal that it might be better if he writes a letter to his doctor.

> Doctors DO pay more attention to the written word.

>

> He should list all of his symptoms and signs, and he can check these against

> those in our web site under 'Hypothyroidism' www.tpa-uk.org.uk

>

> He should take his temperature for 4 or 5 mornings before getting out of bed

> and list these too if they are 97.8 degrees F or 36.6 degrees C (or less).

EDITED TO REMOVE ALL REST OF OLD MESSAGE/S

MODERATOR

[Guest guest]

Problem is Stacey, that a lot of Practices have now changed into

equal partnerships, without a Practice manager. Just make sure you keep copies

of all correspondence you receive and all you send out and get names of people

who phone you or who you phone. This is very important.

Luv - Sheila

Hi,

Can I put my oar in - also I tend to copy the Practice Manager into all letters

sent to GP - a third party at the surgery is always a good one - the GP is less

likely to drag their feet!

Good luck

Stacey

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1913 / Virus Database: 2114/4856 - Release Date: 03/07/12