Re: Hi, I'm new here.

[Guest guest]

Sheryl,

Sorry you are going through such a rough time. I hope that you will turn

your attention to getting well, as it is possible.

I wonder if you were overmedicated and thus gained the weight. If you were

stabilized at a good point for you (that is, your FT3 and FT4 were at a

point at which you felt your best), then you shouldn't gain weight. If your

doctor was incorrectly dosing you according to your TSH (some unfortunately

do this, grrrr), then you were almost certainly hypO, which causes weight

gain. I suggest that you stay on top of your labs, by getting copies of

them and keeping them in a binder. Make notes about how you were feeling at

the time of the blood work, and then attach them to the lab report. This

will help you to find your set point. Important to specifically get Free T3

and Free T4 tests (not other less useful, outdated T4 and T3 tests) at

least every 4 weeks (also important to get a WBC as well). Please try the

PTU again, and read all you can, so that you can be in charge of your

health care. Untreated Graves' is dangerous (thyroid storm, heart attack),

and it would be extremely sad if you were lost due to poor treatment or

neglect.

One place to start is Elaine 's book, Graves' Disease: A Practical

Guide. Also, read Pam B's open letter to the newly diagnosed, which is

second to last listing in the Files section of this site

http://groups.yahoo.com/group/graves_support/files/

In addition, there is a ton of info at Mediboard.com; you can post there as

well, and get info/feedback/support. A good place to start is with Thyroid

Awareness 101

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=004549

I hope you feel better soon!

At 08:46 PM 9/23/2003, you wrote:

>My name is Sheryl. I was diagnosed with GD 3 years ago. I had all

>the classic symptoms, but I ignored them for a long time not realizing

>what it was. I took propranolol at first and then PTU. I hated it!

>I gained 30 lbs and all I could taste for a year was metal. I have

>been getting my thyroid labs done quite frequently for the first 2

>years, but with everything going so good, I slacked off on it.

[Guest guest]

Hello!

You are flirting with disaster here! Did your doctor tell you that untreated

GD can kill you? You were obviously not in true remission when you were

taken off meds a year ago. So if the doc tells you that you can't take ATDs

because they didn't work for you the first time, that is a lie. You were never

in

remission in the first place. I would suggest a new endo and switching to

Tapazole if you don't like the taste of PTU. And you should not be taken off of

it until your TSI antibodies are <2%, regardless of how long you have been on

it. A maintenance dose for life is possible if necessary.

God bless,

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[Guest guest]

that

> she

> didn't recommend putting me on ot if I came out of remission.

One important question is, how was remission determined?

- Were you taken off the PTU at an arbitrary cut-off date?

- Were you taking more than 5 mg. when you stopped?

- Did you stop without ascertaining that you had a TSI of less than 2%?

Yes to any of these questions may indicate that you weren't ready to go

off. I'm sorry that PTU is so hard for you. I wouldn't know because I

took Tapazole but I've heard the stories. About the weight gain -

gradually decreasing the ATD at a rate that's appropriate for you is

supposed to be key. I wouldn't know because I had one of these endos who

must have been taught that it's good for patients to be kept on a

" maintenance dose " (not!) of 20 mg. Tap/ 200 PTU till they're hypo. And

weight gain is quite likely for patients rendered hypo by RAI, especially

if their endos aren't skilled in managing patients on hormone replacement

therapy.

While you're waiting for your referral would your referral would your PCP

consider running some tests that everyone should have as baseline tests

beforfe starting ATDs - liver function panel, CBC, and TSI?

Take care, Fay

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