confused about flu shots/thyroid issues

October 6, 2004

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

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