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addedendum

My Adrenal tumor. That is an interesting story.

My GP sent me to an Endocrinologist for a close look at what was

going on, because I had scads of bloodwork in my file showing me

hypothyroid and the blood tests he ran the day I collapsed and he

put me on IV introduced beta blockers showed me extremely

hyperthytoid. He sent me home with Toprol XL and told me to stop the

synthroid immediately.

The Endo he sent me to was...clueless. My doctor had sent the entire

medical file along with a cover letter introducing me and explaining

that I was very ill and needed immediate attention. I read the cover

letter. I was impressed with my GP in his concern for me.

The Endo picks up one paper from the pile and starts reading it

while asking me questions.

It just happened to be one of my " hypothyroid " bloodwork sheets. I

mentioned that I had been getting dizzy at work at times for several

months, and related the story of nearly passing out in the GP's

office.

He tells me I am hypothyroid, I should go back on my Synthroid, and

started talking about a Neurological disorder and tilt-table tests.

He sent my GP a not saying the same without looking at my file or

running any test at all.

I was not happy. My GP was dumbfounded, and I told him I was tired

of piddling around and wanted to see some doctors at Mayo Clinic. He

said, yes, it is time. His secretary told me it might be quicker if

I contacted them directly, so I did.

After two weeks of me sending info and the clinic sending info, Mayo

told us I was not sick enough for them and they would not do

anything my doctor had already done. They were too busy and I was

not going to be getting an appointment with them, period.

I had not had a cat scan or any testing other than the bloodwork

that a small town hospital can do, and a twenty four hour urine test.

Mayo Clinc could not offer any better effort to diagnose an unknown

condition that was dibillitating me and endangering my life.

One day I ran into an old friend and when he asked how I was doing I

broke with tradition and told him the truth. Hadn't worked in over a

month, how I was ill and all the gory details. The next thing I know

he is telling me to call his wife in late afternoon because she had

been going through this for three years and I should talk to her.

She has Pheocromacytoma, a very rare endocrine gland tumor. My

symptoms matched hers to a tee, and she gave me the name of an

Endocrinologist in Iowa City that is running a study on pheo and

urged me to call him. Two days later he was cat scanning my adrenal

glands and ran at least ten blood tests.

I don't have Pheochromocytoma, I have a big ol benign tumor on one

gland, and he had lots to say about my thyroid. He agreed to treat

me and wrote me a scrip for Methimazole 10 MG to put the thyroid to

sleep, and Levothyrox 125MCG for my synthroid replacement.

He told me the tumor was medium sized, surgery-wise, and the y would

look at it again in three months when I go back for more tests. If

it's bigger, they will remove it. If it is not, they may leave it IF

it is not irritating the adrenal gland.

Pituitary gland is next visit too, and who knows what else.

He said I have very high titers and my thyroid anti-bodies are about

ten times higher than way to high. He is concerned about Hashimoto's

Encepholapoly.

google that. :(

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