A proper intro....sorry

[Guest guest]

56959.1

I'm sorry all, I have never been polite enough to introduce

myself. Actually,I have difficulty typing much due to Repetitive

Strain Injury..can only use left hand at moment which makes it hard

to tell a long story..never mind.. here goes. This is 's

(Fluffy) story :

In my twenties I was diagnosed with Graves and treated with

Carbimazole. It flared up again a few years later and I was treated

with PTU as I was breast feeding at the time.

After this I never really felt well, but lived with it until 4 years

ago when in sheer desperation I ordered a thyroid function test that

came back with a TSH of 9. Alleluia I thought..all my troubles will

be behind me and I will begin to feel well. How wrong I was. I was

started on Levoxyl and my dose was slowly raised to150mcgs. That's

when the real problems started. My legs suddenly went so stiff that

I couldn't walk. They diagnosed MS and started me on steroids...but

that just made me worse..and so they decided that it wasn't MS.

After going through Lupus. myasthenia Gravis, general

neurpdegeneration, etc. etc...and treating me for all of those

without me getting any better, somone suggested that maybe I had

never been hypothyroid and that it was the thyroxine that was causin

the problems. However here are some bloods from the time...as you

can see my T3 was really quite low!

TSH 0.1 Free T4 ....23 (ref 10 - 25) Total T3 ...1.6 nmol/L ref

(1.2 - 2.9)

Anyway to find out whether I really was hypothyroid in October of

last year I slowly stopped taking my thyroxine. About three months

afer I stopped taking it I felt better than I had for a long

time..able to walk easily..and even returned my wheelchair..oh

yes..I had been so bad that I needed a wheelchair, and this from a

former climber/canoeist! In February of this year, despite feeling

very tired we even managed a family skiing holiday.

HOWEVER..bloods taken last month show that I am really quitw hypo..

TSH 43.56 and T4 of 8 (ref range 10 -25) my T3 was I think in the

middle of the range, but certainly higher than it had been when I

was on levoxyl

My endoprat phoned me at home and after asking how the skiing had

been (great!) told me I was well hypo. I said..yes but when I was

on Levoxyl, despite normal bloods, I felt worse..what did he

suggest?

After refusing to prescribe armour or T3 he told me the ball was in

my court. He wasn't telling to take Levoxyl, and he wasn't telling

me not to take Levoxyl..THE BALL WAS IN MY COURT!!!!!! but he was

giving me NO alternatives to Levoxyl!!!!!! He told me it wouldn' do

me any harm to have an underactive thyroid for a few years!!!!! he

told me that the decision was mine..take it or not!!!!

I must also tell you that I found out last week a serum ferrittin

taken at the same time was extremely low... 5 with a ref of 7-

90 ...(note we use different units in the UK...5 is really

low!!!!) No-one told me..and I would not have known if I hadn't

made a fuss and got my notes.

Needless to say I have now found a top-doc who has prescribed me

Armour, and am now on 1 grain..half a grain twice day..and

increasing slowly! However my GP is appalled and won't support

me..they think I should stick with Levoxyl!!!!!

So that's my story in brief..hope that helps you to get to know me a

bit better,

(Fluffy)