Re: To Jill and All....HYpo after PTU!!!

[Guest guest]

AJ wrote:

> Hi Jill,

>

> It is nice to hear from a " lurker " . I'm glad to know you.

>

> Hmm!! You are ahead of my progress for sure. I have so many questions

about how you have achieved so much so soon. I wonder what the Graves'

Group thinks about your hypo symptoms after discontinuing PTU.

>

> How did you discontinue the PTU? Did you have a gradual dose reduction?

How did your endo determine it was time to discontinue the PTU? I would

believe antibody testing should be important to predicting remission. Was

adding T4 of T3 to your meds considered...as in Block and Replace?

Hello, AJ, it is nice to know you, too!

Oh, I wish I had something useful to impart here, but I really don't: it's

just my screwy immune system up to mischief again. This seems to be turning

into an autoimmune-disorder(s)-of-the-year routine - not something I would

encourage anyone to emmulate, though being in remission for Graves is

definitely a good thing.

It wasn't my endo who determined it was time to discontinue PTU. To do that,

he would have had to be paying attention. I got tested when I was feeling

good for the first time, and he loved my readings and asked to see me again

in 6 months. (Yes, SIX months!) Two weeks later I came in of my own accord

and got tested again: trending slightly hypo, as I suspected (TSH rising,

but still " normal " ). I reduced PTU from 125 to 100mg and figured I'd wait a

few weeks and get tested again. (My endo didn't say anything about

follow-up.) Before the time passed, I was headed sharply hypo and, convinced

I was going into full remission, dropped PTU of my own accord. I have now

been off of PTU for a couple of months and am mildly hypo, and planning to

test again soon.

I've been meaning to write the group about my situation, I guess this is as

good a time as any.

My immune system went flip-flop in May of '02 following a period of serial

infections and severe stress, alleviating my asthma, trading one set of odd

food allergies for another, and introducing me to full-blown Graves. (I

wasn't diagnosed till August, and didn't go on PTU till September.) In

retrospect, I probably had mild Graves by Sept. '01. I was finally

stabilizing after a couple of long bouts of serious infection late this May,

and got nice blood work results in early June, when my food allergies

started changing again, my asthma came back, and I started to feel a bit

hypo. To make a long story short, I went hypo fast enough that I just

dropped the PTU. (In all other ways, my immune system seemed to be returning

to where it was 5 or 6 years ago, which was way, way pre-Graves, so I was

pretty sure from that that I was going into total remission.)

I feel a bit hypo yet, and now suspect that I have had some kind of

autoimmune thyroid problem since at least the early 90's - low-level and

undiagnosed. Whatever it was then, I think I have it again, only a bit more

so (slightly more hypo). I'm taking a deep breath, and getting ready to set

up an appointment with a new endo - I'm through with the last one. I want to

get retested, especially antibodies.

-Jill