Re: UNDERACTIVE THYROID - CRAZY SITUATION TO REPORT!!

[Guest guest]

Yes, I agree Fiona. There SHOULD be some kind of group liaison between ME CFS

and Thyroid since there is such a big overlap. I wonder if there are already

such groupsin existence though...the concept of an overlap is recongised by many

practitioners so I'd be surprised if there is nothing in existence already. I

certainly have overlapping symptoms and technically have the cfs tag, but

acquired this at the time when my tsh hit 9.2 and my GP finally decided she

could justify treating with T4. I'd be surprised if others had not had similar

experiences. It is quite frightening actually - young people seem particularly

likely to get the ME CFS tag with no recognition of the hypot status and then

the knock on effects of " living with " rather than " curing " seem to end up by

dictating the rest of life thereafter. In terms of public health policy it does

not seem to make any sense. I just cannot work out WHY the NHS has allowed this

situation to develop. Unfortunately I do not think it stops at ME/CFS - the

" psychiatric " tags of depression, anxt, bi-polar all seem interlinked in

addition when one looks at the literature. I actually think it warrants an

enormous " push " in terms of radio/television health awareness and media input to

shift public awareness. Maybe some budding playwright who deals with social

agenda/politics/health info would be interested ....maybe " the Archers " or one

of the soaps could be involved....??!

Vicky

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> Firsly this isn't about myself, I quote something I read in the Action for ME

mag that I just got through the post.

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[Guest guest]

> Yes, I agree Fiona. There SHOULD be some kind of group liaison between ME CFS

and Thyroid since there is such a big overlap. I wonder if there are already

such groupsin existence though...the concept of an overlap is recongised by many

practitioners so I'd be surprised if there is nothing in existence already.

I have not seen anything on an official note so to speak, but my local ME group

did push me in the direction of Dr P when I went really ill.

The problems are many:

People who are being told at the start it's ME/CFS when it's treatable thyroid

and others like me who started with ME/CFS and then declined so thyroid becomes

half of the problems.

There are also problems with ME people not understanding why it's possible to

have thyroid problems and yet the NHS not pick it up.

This can be anything from reluctance to re-do blood tests, even though the

patient has been off ill a long time and still gone worse. International

variations in the reference ranges. And of course the one where you dont'

utilize the thyroid hormones at cellular level and the adrenal problems.

Clearly this lady doesn't fall into any of the above controversial categories as

such, but does fall into the category of the NHS being luke-warm towards the

thyroid and not wanting to believe how ill it makes you.

The emphasis on ME is largely " adjust your expectations " rather than treatment.

Looking back I know I had adrenal problems a year before I went off sick again

with the ME. I am sure I had some sort of thyroid problem as well before I saw

Dr P and my situation is complex in that I have had problems in all areas of

thyroid. Yet no warning bells when I went so ill in 2006/7!

In my mind, nobody with a TSH of 9.2 should be tol they have CFS. That can only

be a mis-diagnosis and treatable.

Fiona.

[Guest guest]

Problem is that the NHS believe they are right and are following guidelines..

There is very little come back if this woman later discovers for her self that

she has thyroid problems, the docs will just shrug shoulders and close ranks..

(no... really? )

If you write to her and give her the website address, she might decide to have a

look, or not.. I have a really good friend who has struggled with thyroid

problems, he's on tablets for high blood pressure, statins, thyroxine (about

250) and feels awful. No matter how much I tell him about supplements, this

website, T3 and adrenals, he just says, I'll ask the doctor.

You can't help everyone. Don't waste your time trying. I think it would be

fair enought to point her in the direction of this site, but after that it's up

to her.....

..

>

> Clearly this lady doesn't fall into any of the above controversial categories

as such, but does fall into the category of the NHS being luke-warm towards the

thyroid and not wanting to believe how ill it makes you.

>

> The emphasis on ME is largely " adjust your expectations " rather than

treatment.

>

> Looking back I know I had adrenal problems a year before I went off sick again

with the ME. I am sure I had some sort of thyroid problem as well before I saw

Dr P and my situation is complex in that I have had problems in all areas of

thyroid. Yet no warning bells when I went so ill in 2006/7!

>

> In my mind, nobody with a TSH of 9.2 should be tol they have CFS. That can

only be a mis-diagnosis and treatable.

>

> Fiona.

>

[Guest guest]

Fiona,

Do you want people to write to independently? Do you want to compile

something yourself?

I am quite prepared to email her giving my experiences but feel that as I am not

yet " out of the woods " it might be more helpful for her to have feedback from

those who have had cfs/me and thyroid problems and who have recovered with

thyroid treatments.

I wonder whether the simplest thing might not be for you to simply email her and

suggest she posts her email directly on this site so that she can get replies

and support here directly - that way at least she can have the benefit of all of

our experiences and ask any questions she may have along the route.

Vicky

>

> There are also problems with ME people not understanding why it's possible to

have thyroid problems and yet the NHS not pick it up.

>

> This can be anything from reluctance to re-do blood tests, even though the

patient has been off ill a long time and still gone worse. International

variations in the reference ranges. And of course the one where you dont'

utilize the thyroid hormones at cellular level and the adrenal problems.

>

>

> In my mind, nobody with a TSH of 9.2 should be tol they have CFS. That can

only be a mis-diagnosis and treatable.

>

> Fiona.

>

[Guest guest]

Please don't forget to cut previous messages when replying- MODERATOR.

> If you write to her and give her the website address, she might decide to have

a look, or not.. I have a really good friend who has struggled with thyroid

problems, he's on tablets for high blood pressure, statins, thyroxine (about

250) and feels awful. No matter how much I tell him about supplements, this

website, T3 and adrenals, he just says, I'll ask the doctor.

>

> You can't help everyone. Don't waste your time trying. I think it would be

fair enought to point her in the direction of this site, but after that it's up

to her.....

>

> , I totally know what you mean about you can take a horse to water, but

you cannot make it drink... All I can say is that those people who have not been

as proactive as us, cannot be that ill then, or at least are content peddling

round the same ground, accepting, this is how it is now.

I quite agree, I have more than enough on my plate, sorting myself out.

Vicky, Good thinking!

At the end of the day, I am not out of the woods either but I know I need to go

back on T3, end of! I know that I will stick with the adrenal supplements. I am

even coming to the realisation that my so called low end of normal iron stores,

was actually addiing to my symptoms as well and that it wouldn't surprise me if

I have had that problem for years and not known it!

The problem is that perhaps a lot of TPA people are coming at things from the

perspective of being a thyroid only patient; whereas I am coming from the

perspective of both thyroid and ME patient. But just because I was ill before,

doesn't mean I don't need the relatively newer thyroid diagnosis to be

under-treated. It's only with treatment that you learn how much of it is ME and

how much of it is thyroid. Even if ME people cannot be 'cured' with thyroid

treatment, we can still have a life worth living and be out of the woods.

So what I will do at some point, is wright a short letter to that BOX number,

point her in the direction of the group and hope for the best.

Fiona.

Fiona.

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