Re: A few what if's

[Guest guest]

He indicated that a pituitary problem should be

investigated and my GP " should " be happy to refer me to an endo and

the ones at the western/royal infirmary have excellent people working there.

Now my problem is - #1 - i've already spoken to an on-call endo there and she

spat me out pretty quickly when I mentioned my Free t4 was 11 (your NORMAL she

said. Go back to your doctor, there is nothing wrong with your thyroid)

This is why we have our recommended doctors list - there are too

many NHS endocrinologists who specialise in diabetes and know little to nothing

about thyroid disease and if your thyroid function tests are seen to be

ANYWHERE within the so called reference range, the laboratory staff write

'normal' and the endocrinologist accepts this, never once questioning whether

the result is at the bottom, the middle or the top of the range.

#2 - the chief up there (it used to be the

famous Dr T) is on the BTA council and he's a member of the guidelines for

thyroid testing. And we know what their thoughts are of people in range and

dishing out NDT?

Say no more!

So;-

Based on the nice Doc's email, I'm going to aim for the GP to refer me.

Question is ??

#1 - do I accept the referral she will likely give me to the Edinburgh Endo's

and worry about not being listened to, fairly treated or thrown out. and given

yucky Levo.

You may well be lucky and find a wonderful doctor who knows

about thyroid and thyroid related issues. It is, however, very likely that the

first thyroid hormone replacement they will give you is synthetic

thyroxine-only. You may be lucky in that you could do very well on this,

because you could well be a good 'converted' of the mainly inactive T4 into the

active thyroid hormone T3. You will never know unless you give it a go.

#2 - Ask for a referral to the nice Doc (he's

outwith my area and has already suggested I go to Edinburgh. How can I convince

him to see me?)

Ask for a referral to a 'good' doctor that has been recommended.

You can convince him/her to see you by writing a letter, setting out your

symptoms, signs, listing your basal temperature taken for 4 or 5 days, listing

members of your family who have a thyroid or autoimmune disease. Listing all

the blood tests you need, e.g. TSH, free T4, free T3 and testing to see if you

have antibodies to your thyroid. Asking for ferritin, B12, D3, magnesium,

folate, copper and zinc to be tested to see whether any of these are low in the

range, which would need to be supplemented to help the thyroid hormone to be

fully utilised at the cellular level. Tell him/her that you have not had a

thorough clinical examination which you need. Tell him/her of your

determination to find out exactly what is causing your problem as you are not

prepared to continue to suffer any longer without everything being thoroughly

investigated.

#3 - Get a direct referral to Skinner or

Peatfield? (how much are we talking as a matter of interest as a consultation

fee? I can't really afford private but if needs must!)

You don't need a referral to see Dr Peatfield, you can make an

appointment with his secretary on 01883 623 125 or with me if you can attend

the Yorkshire clinic on 7th to 10th June. Dr Skinner charges £180 an hour, but

if you have adrenal problems, he doesn't treat those and he would give you

private prescriptions for whatever medication he recommended. Dr Peatfield

charges £150 an hour and a quarter for a first consultation and then £70 for

follow ups. He does not give prescriptions because he is now retired and no

longer registered with the GMC but recommends where you can buy the medications

he recommends. He will and does treat adrenals and all the other associated

conditions that go along with having a thyroid/adrenal disorder.

thanks for any advice. Is there way to convince

a GP to refer me if they don't think there is anything wrong. Should she be

convinced by the email from the " nice Doc " ?

See my comments are #2.

Luv - Sheila

[Guest guest]

thanks Sheila :-

> This is why we have our recommended doctors list - there are too many NHS

endocrinologists who specialise in diabetes and know little to nothing about

thyroid disease and if your thyroid function tests are seen to be ANYWHERE

within the so called reference range, the laboratory staff write 'normal' and

the endocrinologist accepts this, never once questioning whether the result is

at the bottom, the middle or the top of the range.

You may be lucky in that you could do very well on this, because you could well

be a good 'converted' of the mainly inactive T4 into the active thyroid hormone

T3. You will never know unless you give it a go<

that's true - but they don't do the Reverse T3 any more do they? i'm just

terrified of this Levo stuff and putting on any more weight - I can't afford to

buy any new clothes - I will have literally nothing to wear....

>Ask for a referral to a 'good' doctor that has been recommended. You can

convince him/her to see you by writing a letter, setting out your symptoms,

signs, listing your basal temperature taken for 4 or 5 days, listing members of

your family who have a thyroid or autoimmune disease. Listing all the blood

tests you need, e.g. TSH, free T4, free T3 and testing to see if you have

antibodies to your thyroid. Asking for ferritin, B12, D3, magnesium, folate,

copper and zinc to be tested to see whether any of these are low in the range,

which would need to be supplemented to help the thyroid hormone to be fully

utilised at the cellular level. Tell him/her that you have not had a thorough

clinical examination which you need. Tell him/her of your determination to find

out exactly what is causing your problem as you are not prepared to continue to

suffer any longer without everything being thoroughly investigated.<

do you mean to the GP? I've already sent a letter with the detail you describe

to the GP I will be meeting next week and also to that nice Doc (Dr P on your

list in Scotland) who I think is an Endo and it was he who said - " your GP

should be happy to refer you but go to Edinburgh as there are good Endo's there "

Thanks for the private info - as I suspected outside of my budget, although

perhaps by June I could save up that much. I will know in the next few weeks if

i'm banging heads off brick walls.

Do you (Sheila) remember who mentioned Dr P in Falkirk? He certainly seems to

know a bit about pituitary and even if the Edinburgh Endo's do know a LITTLE

about Thyroid - I bet they know even less about pituitary - although it's the

same treatment for hypo anyway.

thanks for your help Sheila!

take care

sarah