Re: Made my decision .....sort of

[Guest guest]

Hi Islander,

Sounds to me like you are following your gut instinct, and THAT has always

proven to be the correct course of action for me. Besides the fact that RAI

is a no going back situation. The drugs will allow you a chance to educate

yourself, and with a clear mind. Which in my opinion should be the law, as

informed consent can not happen while we are still hyper.

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Now this makes me a tad nervous:

"

He said it could be hard with medication because I might have times

that are worse than others "

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It is possible these doctors do not use antithyroid drugs often enough to do

it the best way possible, and their experience is seeing patients not do

well because of their own lack of track record.

This is not a problem however, since we are willing to help YOU learn. In

the end, no matter how experienced the physician, if the patient is not in

the drivers seat after the first month or so, the best any doctor can do is

guess at what the correct dose of antithyroid drugs( ATDs) is right.

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So... lets get you started out right here.

Get copies of all the lab results thus far.

You will probably need help understanding what each of them mean. We can

also make general comments, as to if... in our group experience, if the dose

of PTU they have started you on matches those lab values.

Standard starting dose of PTU is 300mg. per day. BUT... if you did not have

any tremors before the iodine included in the RAI they had you swallow for

the scan, you may well not even be that hyper to start with.

PLEASE be sure you take your PTU in THREE evenly decided doses each day.

They need to be eight hours apart. The last dose can be close to the eight

hours, as loosing sleep to wait on the final dose is not recommended.

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This brings up a few more things.

Since that high dose of iodine DID increase your hyper symptoms, please be

aware that you, like most all of us ARE sensitive to iodine. For right now,

just do not eat seafood , kelp, any supplement with kelp or iodine,

including your daily vitamin.

Later, after things start to settle down, you may want to learn which other

common foods cause us problems, but one thing at a time. This is not a

painful process if you take it all in small , logical steps.

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Back to your labs.

Be sure that a liver panel and white blood count WAS done as a baseline

reading before you ever swallow the first pill !

These will be off from Graves' itself, and if they only check these labs

AFTER you have been on the PTU for awhile, it will falsely be said that the

medication caused this bad result, and they then have the power to force you

into a very difficult position, telling you that you have NO choice but to

take the RAI.

IF you do choose to do RAI later, it MUST be your free will, not caused by

a common mistake.

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I can not imagine the drama of having the time to try to make this choice of

treatments. It must have been so agonizing.

My situation was much different. I had been misdiagnosed for so long, and

all the ailments the doctors claimed was the problem earlier, had treatments

that routinely made me much sicker. So as my hyper became progressively

worse with each passing week, I steadfastly refused to go to a doctor, since

'worse' did not sound like a good option at all. Figured they would kill me

for sure if I went in.

Bad move on my part I guess, since I did not get better doing nothing for

months on end, and ended up in emergency with freaked out hospital workers

and I was not only very ill, but had hit the point of some sort of psychosis

Looked like death, shaking too bad to walk, and had a fever that wouldn't

quit.

They had no choice but to fill me up with fluids, meds etc.

Once they had me to the point they could talk to me and said the words

radiation or die, I totally flipped out and the white trash language I have

heard on the street, suddenly appeared in my vocabulary, with no shame on my

part. Weird... very weird the words I found.

I have always be involved in concern over radiation, and many of my close

friends were instrumental in getting Trojan closed down, and are still part

of the Hanford Watch.

Thus MY gut instinct needed no time to kick in . Real scarry being sent home

with the PTU and the words I would die if not treated with the RAI. But made

it through and am now in remission too!

I have even had time to understand why there was never been one remission

study ever done using " ALL " the proper ATD protocols. Sad, darn sad.

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1.What lab tests confirmed Graves' ?

2.Did the scan show any nodules ?

3. How much PTU ?

4. What is protrusion measurement for your eyes ?

5. What are your TSH - FT4 - FT3 now ?

6. Do you have the liver and WBC labs done ?

Good health to you !

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.