Re: CYTOMEL and 'sleeping beauty syndrome'

[Guest guest]

I haven't heard of this particular interview but I did see a report on the news

about this complaint a while back. One sufferer was a teenage boy and another

was a teenage girl. What struck me about it was they said the girl would spend a

fortnight each month asleep. This made me wonder whether it was a hormonal

complaint in her case but hormones weren't mentioned in this report. This was

the first time I had ever heard of this complaint.

Louise.

>

> Hi All – and Bob,

>

> On BBC radio World Service last night there was an interview with a teenager

who has `Sleeping Beauty syndrome' which means she sleeps for up to two weeks at

a time.

>

> In the interview her father said that the British doctors don't know how to

cure his daughter but he said that he had contacted someone – a doctor, I think,

in the USA and had been given a treatment which would help her - CYTOMEL !!

>

> The father said that Cytomel was not available in UK. Although it is early

days, he hopes that it will help his daughter.

>

> Has anyone else heard of this interview or knows anything about this teenager?

>

> B

>

> p.s. I listen to BBC World Service if I cannot get to sleep - I find it very

soporific - but last night it was the opposite due to the Cytomel interview.

>

[Guest guest]

Was it this program?

http://www.bbc.co.uk/iplayer/episode/p006hrsl/Outlook_10_03_2010/

" Sleeping beauty

Fifteen-year-old Louise Ball has Kleine-Levin Syndrome - the so-called " sleeping

beauty " syndrome. She sleeps for up to two weeks at a time, and tells us she

once slept through an entire family holiday. "

[Guest guest]

Hi Louise,

The young girl in the interview lives in Brighton. She said that the sleep

problem started after she was ill with flu.

It would be really interesting to find out if the Cytomel is doing her any good.

B

[Guest guest]

I'd be interested to know if it's helping and if it is, is it because she's got

something wrong with the peripheral metabolism of thyroid hormones? Also the

father says Cytomel isn't available in this country but it's only T3 and that's

available. Although, us thyroid patients have enough of a job getting it

prescribed so maybe no-one would dare prescribe it for any other illness.

Louise.

>

> Hi Louise,

>

> The young girl in the interview lives in Brighton. She said that the sleep

problem started after she was ill with flu.

>

> It would be really interesting to find out if the Cytomel is doing her any

good.

>

> B

>

[Guest guest]

An article in the Daily Mail

http://www.dailymail.co.uk/news/article-1249895/Louisa-Ball-Real-life-Sleeping-B\

eauty-sleeps-weeks-time.html

[Guest guest]

Psychiatrists prescribe T3. As T3 is the active thyroid hormone,

why on earth can't endocrinologists prescribe it. Crazy!

Luv - Sheila

I'd be interested to know if it's helping and

if it is, is it because she's got something wrong with the peripheral

metabolism of thyroid hormones? Also the father says Cytomel isn't available in

this country but it's only T3 and that's available. Although, us thyroid

patients have enough of a job getting it prescribed so maybe no-one would dare

prescribe it for any other illness.

Louise.

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