Re: Labs... and still having difficulty finding a doctor.

[Guest guest]

Hi Lucy, I know what you are going though - that is why I ended up doing it

all alt med - because I couldn't find an endo or internist who would treat

me without that stupid uptake scan.

The good thing is that you have an RX for PTU - it's not often a doc just

takes you off an RX that another doc put you on - except these endo-gods you

have run into - you need to fire them and find yet another one... OR here is

a thought... will your GP monitor you on the PTU?

Another idea - can you call the doc in Alabama and ask him if he can send

orders for labs somewhere local to you and then have the lab send him and

you copies and then perhaps consult by phone one month, in person then next

- strike some kind of deal like that with him?

Good luck, I know this is one of the hardest parts of graves - getting good

treatment.

Pam B.

[Guest guest]

Hi Lucy,

Again, I think this guy is preparing you for RAI. If you are determined to

go the medication route, I would make it my business to go back to the doc

who gave you the meds, or find another who is willing to medicate you.

(Perhaps you can do phone consults with the doc in Alabama, and pay him in

advance, with you faxing results of blood work done by a local doctor or

lab. Not sure if they do this, but it's worth asking.)This is my humble

opinion, from a newbie ;-)

P.S. As you are probably aware, RAI can make eye symptoms worse. I would

opt for surgery over RAI, but that's me.

At 04:35 PM 6/30/2003 +0000, you wrote:

>Hi again, I am the one who was abruptly stopped form PTU by endo #2

>(400 to 0). After 10 days off of the PTU, today, they told me that I

>should continue to stay off until July 10th when they can do the

>thyroid uptake scan. The endo aparently decided that I need the

>uptake scan because of my increased palpatations. We had previously

>agreed to an ultrasound (thanks for reminding me about that) and

>continuing on PTU after 10 days. Today is the day that I was

>orginally scheduled to continue on the PTU so I started it this

>monring. The nurse has implied that they will not treat me if I

>continue on the PTU and do not have the uptake scan. It seems ironic

>to go to a place of healing that contains so much stress for me.

>Part of me considers just following their orders but my intuition is

>still with the PTU, I am very torn about what to do. I cannot find a

>physician who is willing to treat me with ATD's, except the one who

>orginally prescribed it for me (thank God) and he is 5 hours away in

>another state (Alabama, I live in Pensacola, FL). I had intended to

>go back there every 5 weeks but due to a demanding work schedule,

>have not been able to do that. I have classic Grave's disease

>including the eye protrusion. My lab test have not been consistent

>due to my " search " .

>

>FEB. 2003

>

>Free Thyroxin 6.3 (High limit 5.5)

>T4 13.8 (normal 4.5-12.0)

>T3 " normal " (59-174)

>TSH 0.020 (normal 0.50 - 4.70)

>

>

>APRIL 7, 2003

>

>Anti-TPO Thyroid Peroxidase (Microsomal) 305 (normal <100)

>TSH 3rd generation <0.003 (normal 0.35-4.94)

>

>

>JUNE 19, 2003 - after 10.5 weeks of 400mg/day PTU

>

>T3 113 (70-170)

>Free T4 0.04 (0.7 - 1.9)

>TSH 4.11 (<3.3)

>

>

>Since June 19th, I have only taken 125mg PTU, could I be back near

>hyper levels again? It appears to me that my body responded to the

>PTU, is this a good sign that I could go into remission? The endo

>thinks that PTU is too high risk for the WBC problems and because it

>causes liver problems. He excitedly described several events of

>persons who ended up in the ER due to PTU. ALthough each case was

>preceeded by " forgot to take their medication... " . I am a strong-

>willed, determined person, but it is getting difficult to face the

>stress of these people who consider me a problem patient. Was my

>disease too far advanced intially that I should just give up and have

>the RAI? I have been misdiagnosed for at least 3 years, been on

>Toprol XL for 1.5 years due to the strange PVC's that suddenly

>occured. The current endo #2 told me to stop the Toprol also (after

>1.5 years).

>

>Sorry for being so lengthy... Thanks for all of your help.

>

>Lucy

[Guest guest]

Hi Lucy,

If this doctor keeps all his patients on 400 mg PTU so they end up severely

hypo, it's no wonder they eventually end up in the ER.

He first overdosed you and then tries to get your hyper symptoms to return by

telling you to abruptly go off meds for too long of a time, for a test that

isn't even needed. Since you have thyroid antibodies you don't need any more

tests to diagnose GD.

You don't have to see an endo to be treated locally. But if it is a problem,

the Alabama doctor could do most of your monitoring by phone since you'd be

primarily having lab tests that could be done anywhere. And you could see him

every six months.

You did respond well to ATDs but you would need a TSI antibody test to see

where you are in terms of remission. Take care, Elaine