Re: thyroid Carol Joanne

[Guest guest]

Some easy reading sites..

http://thyroid.about.com/ a mine of info lots of peope have 'more

than' just plain thyroid some even suspected mito.(grin) and other

weird things...really lovely folks..

http://users.bestweb.net/~om/thyroid/ adrenal thyroid connection

http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=endocrin.section.375

http://www.thyroidmanager.org/

http://www.thyroidhistory.net/thyroidhistory.net/index.asp this one

is addictive and if you ever want help Edna can be reached !!! She

just does research in the British Library and is wheelchair bound!!

Gillian

>

> Hi Carol,

>

> I just thought I would add my 2 cents worth on the thyroid issue.

I

> was just like you for years. My mother and my sister were both

> diagnosed as hypothyroid. I was tested many times. Every time

the

> doctor said that I was " normal " . I kept researching the issue. I

> found information on the internet (where else since most days I

was

> too sick to go anywhere). It talked about people that are

> hypothyroid without having it show up on the usual tests. You

need

> to get your free T3 tested. Mine was low. My T4 was at the very

> low end of normal. My TSH was normal. At first my PCP refused to

> treat me for this. It is not mainstream after all. I found an

> alternative doctor that was willing to treat me. I found a

referral

> at this web site. (http://wilsonsyndrome.com/) The treatment for

> this is to take a T3 supplement. It is in a time release capsule

> and is compounded at a local pharmacy. Wow! what a difference. I

> felt so much better. I went into a sort of remission for 3 years

it

> helped so much. I did really well until the leads to my pacer

both

> cracked. I had this happen before and I told my cardiologist that

I

> thought that is what was going on. Needless to say no one

listened.

> Story of my life. AAAArrrrrrgggggg. Since I am 100% pacer

dependent

> that does not make for a good quality of life. Well they finally

> discovered that I was right. After 3 operations they got it

right.

> Well you know how well we do with the stress of surgeries. (Not to

> mention having an intermittent heart beat for 6 months) I have

been

> down for the past 2 years since then. Last Year I went down to the

> Endocrine clinic at UCSF. The doctor there was going to prove me

> wrong. He told me that I was taking way too much thyroid

hormone.

> That there was no way I needed that much. Guess what? He was

> wrong. After running a bunch of tests, with surprise in his

voice,

> he said " I can't explain it, but you need this. For some reason

you

> are Thyroid Hormone Resistent. " Lately I have been really

interested

> in the information Gillian told me about. In Italy and the UK

they

> are researching the relationship between thyroid problems and

FOD's

> (Fatty Acid Oxidation Defects). I have had so many doctors

puzzled

> over all my 'wierd' symptoms. It makes sense to me that they are

> all connected. Someday we will put this all together. Hang in

> there and don't take no for an answer.

> Keep the faith

> Joanne