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Re: was: thyroid rage - 900 mg PTU??? and question

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On Wed, 3 Sep 2003 22:40:47 EDT allecatz1970@... writes:

> Sandy....In March 2003 was i was diagnosed with Graves Disease. My

> enodcrinoligist had put me on PTU right away at 600mg/day...and also

> on Atenonol

> 50mg...to ease the tremors and lower my heart rate....

>

> June 16/03

> Free Triiodthyronine 27.1..should be 8.5-6.5

> Thyrotropin( sensitive TSH) .05...should be 35-5.00

> Free Thyrotropin( Free T4) 46..should be 9-23

>

> July 30/03

> TSH .05..should be .30-4.70

> T4 Free 24.3..should be 9.1-23.8

> free T3 16.8..should be 2.5-5.7

>

> August 29

> TSH .05 should be .30-4.70

> T4 Free 24.1

> T3 Free 18.4

>

> When first seen by Endo....blood pressure was rangin between 170/98

> and

> 150/89...

> By August I was sittin at 126/70

> Blood preesure as of tonight September 3 2003 (chiropractor read it

> ) was

> 150/80

>

> Currently on 900mg of PTU

> 100mg of BB

> 25mg of Vioxx

Hi Alle. I guess I didn't read your numbers properly last week because I

thought the ATDs weren't having any effect at all when this isn't so. You

really made progress between your first 2 rounds of bloodwork. Here are

my thoughts:

1. Does your doctor routinely start patients at 600? This is not standard

and sets off the alarms, IMHO. 300, occasionally 450, is a typical

starting dose even for very active Graves.

2. Ideally, one starts at a high dose and gradually decreases. Increasing

medication after the first round of bloodwork once on medication also

gets me nervous. You know, I'm all for frequent bloodwork but if you

were fairly stable from the end of June to just 4 weeks later then I as a

doctor would have kept you on that dose and checked you another 4-6 weeks

later. If I would have still felt a dose increase was in order I wouldn't

have increased by more than 100 mg.

3.Your side effects - weight gain, confusion, etc. - are not typical in

that they're too dramatic. Yes, it's easy to gain the weight we lose when

hyper back, and ocassionally, even with a competent endo we can go a

little hypo which messes our heads a bit, but this is tremendously scary.

Most of us saw tremendous progress starting at 300 or a bit more (or 30

for methimazole) and were able to reduce from there. Many incompetent

endos then keep their patients at 200 (or 20) for much longer than

warranted because they rely on TSH, so beware of that happening too. I

believe that you will be able to decrease your dose to more normal

numbers and that you have to for your health.

Here's a question for other members: How should Alle best reduce her

medication? (Alle, sorry to be talking about you as if you're not in the

room.) I'm thinking of this analogy - the need to decompress to avoid the

bends. Reduce by 50 a day every two days, and till what point? Obviously

she needs to get her doctor in on this but also obviously he (she?)

doesn't seem competent or trustworthy, so Alle will have to come in with

some kind of a game plan to get the dr.'s rubber stamp.

Keep us posted Alle. Also, try to be philosophical about any weight gain

you may have IF we're talking about it slowly creeping up - try to eat

healthily and move a bit (something gentle like walking, especially

outdoors for your mental health). BUT, this is not normal! Even if it's

due to the BB and Vioxx (which I'm not at all familiar with) it's still

dangerous!!

Take care, Fay

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