Re: New labs and anti-body question - Elaine or others

[Guest guest]

Hi ,

I was diagnosed right at the end of '94. My dad had just passed away from

Alzheimers in NY as I was closing escrow on 2 homes in CA and in my senior

term at culinary school during that summer, and I was racing from coast to

coast, dealing with my evil stepmother (who auctioned my childhood off

without letting me in my childhood home), trying to pack up a house of 5

people and move into a horribly filthy fixer-upper half the size of our old

home (but in a better school district for the kids), and going to school, a

10 hour a day commitment including commute. Is it any wonder I got sick? For

months, I thought my symptoms were simply stress.

I was diagnosed, finally, because I decided I felt so bad I should maybe get

a check-up, and the GD turned up on routine blood tests. I didn't take any

ATD's for about the first 18 months, but opted to try Chinese herbs instead,

monitored by the endo. They were working, until we took a trip and I had to

go without some of them (the ones not available in powder form) for 3 weeks.

When we returned, I simply was too sick to resist any longer.

I never could stand the beta blockers--they turned me into a total zombie,

I'd forget to pick the kids up, I almost drove through the garage door one

day backing out without opening it, and I was terrified of fainting. I have

always had low BP, and figured they were simply not for me.

Well! That's more info than you asked for, eh? Probably me needing to yak

'cause I've had a headache all day, and sometimes, oddly, the yakking helps.

Take care,

Terry

>

> Reply-To: graves_support

> Date: Thu, 11 Sep 2003 21:41:27 -0000

> To: graves_support

> Subject: Re: New labs and anti-body question - Elaine or

> others

>

> Thank you Terry,

> Your description of your own experience is very helpful, and I'll

> share this one with Lillie, as you're on the same meds as she is, and

> show a good example. The reality of the long-term aspect of this

> treatment is just hitting home for all of us. How many years is it

> again, since your diagnosis?

>

> Please look at my response to the others for a good flax oil recipe!

>

> Thanks again, and I hope you're feeling OK,

>

> -

>

>

>

>

>> Hi ,

>>

>> Now you see why we always harp on slow reductions. The avoidance of

>> " rollercoaster " medication dosage is desirable from my personal

> experience;

>> probably she'll be fine on 15 mg. for a bit, and after a while, her

> levels

>> will come down to the point she can return to 12.5 then 10 mg. and

> beyond,

>> down to an eventual maintenance dose or even remission.

>>

>> Anyway, the rise in levels is probably nothing to worry about--I

> personally

>> went from close to remission, through a rough period a year or so

> ago back

>> up to 15 mg. a day, then down to 12.5 mg. a day and 10 and then 7.5

> and 5

>> and now I'm taking about 2 or 2.5 (the pills are hard to split in

> quarters).

>> It's a long process, but careful self observation of symptoms and

> regular

>> labs helps a lot.

>>

>> Don't be discouraged!

>>

>

>

>

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> Please consult your doctor before changing or trying new treatments.

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[Guest guest]

Hi ,

How does Lillie feel? Her labs are only slightly elevated, so she'd probably

be fine without the dose change. But if she does have some hyper symptoms it

could be that the jump from 20 mg to 10 mg was too much of a jump.

I'm sort of hedging here because these labs fit into a borderline range.

As you know TSH stays suppressed for a long time so it's not helpful now.

Also, most labs (based on the most widely used methods) use an FT4 reference or

normal range of 0.8-1.8 or 0.8-2.0. And T3 is more likely to be falsely

elevated than the FT3.

I'd still go with the 15 mg to be compliant or appear to be compliant, but

I'd watch carefully for hypo symptoms especially after a few weeks. Of course if

you feel you have a good relationship with your doctor and Lillie has no hypo

symptoms, you could ask about staying on 10 mg longer. I say this because the

usual maintenance dose after 6-8 weeks on meds is 2.5-10.0 mg daily and I

don't recall your daughter's symptoms being ecxeptionally severe. And a move

into

hypo is associated with a worsening of eye symptoms. This is because the

thyroid gland itself (the site of thyroid antibody production) slows down when

thyroid hormone levels are on the higher side of the normal range.

I wouldn't push for the TSI and TBII now because those levels will be

changing a great deal over the next few months. Some doctors will run a second

TSI

after a few months to make sure there's a good response to treatment but usually

you can tell this by the lowering of thyroid hormone levels. However, since

these abs take 2-3 months to break down before leaving your circulation, the

results could be misleading if you have the repeat test too soon. Like if the

levels were rising before she started treatment they could reasonably be the

same or higher than the first test. You could become falsely alarmed. Right now,

it's not unusual to have some fluctuating eye symptoms, and these generally

resolve. Overall, younger patients are less likely to have serious eye disease.

Many people also have more noticeable eye symptoms premenstrually due to fluid

retention and fluctuating thryoid hormone levels related to

estrogen-dependent changes. Glad to see you on the board, Elaine