been away but back now with disappointing news

[Guest guest]

Hi Ruthie,

Good to see you back but sorry you weren't truly in remission. I suspect you

might have still had appreciable levels of TSI when you went off meds and

weren't truly in remission.

Hopefully, will chime in as this happened to her and many other people.

In Europe, ATDs are frequently used long-term and a number of people in the

States also using them long-term. who posts mostly on Mediboard, has

been on ATDs for more than 20 years.

There is no risk to long-term use, as any adverse effects, which are rare,

usually occur in the first 4 weeks of therapy when ATD doses are high.

I'd ask for another course of ATDs and before you stop them make sure your

TSI is low. While normal is <130%, truly normal people have TSI levels of <2%

activity. Take care, Elaine

[Guest guest]

Hello ladies,

I have been away from the group for quite a while...just couldn't

keep up with every post the way I wanted and life gets hectic enough.

I was diagnosed in Nov of 2000...had good results with Tap for just

over 2 years and went off all meds this past February with hopes of

remission. One month post meds all was well. 2 days ago, I felt my

neck and noticed enlargement again along with having a few

palpitaions recently and Weight watchers never worked so well before!

Anyway, blood work was done yesterday and Endo just called. Labs are

as follows:

TSH <.01 range .40-5.5

Free T4 3.1 range 0.8-1.8

Total T3 238 range 60-181

What I need to know is this....I recall someone on this list having

reported being on Tap for 20 + years. Please tell me...what are the

risks and have many people done this...stayed on Tap long term?? My

Endo was sure she had never heard of anyone doing so unless they were

quite old and suggests surgery since I told her I would never do RAI.

Anyway,

aside from being a bit sad that remission didn't happen...I am scared

to death of surgery as I've never had any before...never been

unconscious before and the thought is frightening. I'd rather just

stay on the Tap. I am 42 yrs old. Looking forward to hearing from

any and all of you,

Ruthie

[Guest guest]

Hi Ruthie,

I just posted about this, but specifically I've been on Tap for about 9

years and have no problems from it. My endo has no problem with my staying

on it either. Granny might just chime in, I don't know if she's

monitoring but put her name in the subject and you'll see. She's been in Tap

for a whole lot of years more than me.

Terry

>

> Reply-To: graves_support

> Date: Thu, 29 May 2003 21:15:09 -0000

> To: graves_support

> Subject: been away but back now with disappointing news

>

> Hello ladies,

> I have been away from the group for quite a while...just couldn't

> keep up with every post the way I wanted and life gets hectic enough.

> I was diagnosed in Nov of 2000...had good results with Tap for just

> over 2 years and went off all meds this past February with hopes of

> remission. One month post meds all was well. 2 days ago, I felt my

> neck and noticed enlargement again along with having a few

> palpitaions recently and Weight watchers never worked so well before!

> Anyway, blood work was done yesterday and Endo just called. Labs are

> as follows:

> TSH <.01 range .40-5.5

> Free T4 3.1 range 0.8-1.8

> Total T3 238 range 60-181

>

> What I need to know is this....I recall someone on this list having

> reported being on Tap for 20 + years. Please tell me...what are the

> risks and have many people done this...stayed on Tap long term?? My

> Endo was sure she had never heard of anyone doing so unless they were

> quite old and suggests surgery since I told her I would never do RAI.

> Anyway,

> aside from being a bit sad that remission didn't happen...I am scared

> to death of surgery as I've never had any before...never been

> unconscious before and the thought is frightening. I'd rather just

> stay on the Tap. I am 42 yrs old. Looking forward to hearing from

> any and all of you,

> Ruthie

>

>

>

>

>

>

>

>

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> intended to replace expert medical care.

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

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[Guest guest]

Hi Ruthie:

Welcome back, I just showed up again also. I was on PTU for about 18

months before going into remission, thereafter, I had some months of

changes in my levels - I had to work my PTU dosage and with labs every

3-4 weeks. However, the range I was fluctuating in was not as high

(or low for TSH) as your recent labs.

Now, I'm watching myself and always in the back of my mind is the

question of how long the remission will continue. Of course I don't

want to take anything at all, but I know that I would get back on ATDs

for as long as it takes if I needed to. I completely understand and

agree with your concerns about surgery. Never had one until I was 40,

and then had 3. I know that the first surgery (along with quitting

smoking) kicked my kind of dormant Graves into full swing.

In retrospect, I wish when I was at the point you are at now, that I

was a bit more careful in monitoring my dosage and my labs - I got

impatient because I so wanted to be in remission, and sometimes made

moves in adjusting my meds that caused confusion and discomfort - so I

hope you will take your time and be as methodical as you can as you

deal with this new challenge.

Good luck,

> What I need to know is this....I recall someone on this list having

> reported being on Tap for 20 + years. Please tell me...what are the

> risks and have many people done this...stayed on Tap long term??

[Guest guest]

Hi Ruthie,

Sorry to hear of your relapse. I believe it is Granny that has

been on Tap for over 20 years. I understand she is having some

computer problems right now and is not online.

I, on the other hand, have been taking Tapazole for just over 4

years. I've been on an ultra low dose of just 2.5mg a day for over 2

years. Currently I take 1.25mg a day.

There is a mention in the book " Thyroid for Dummies " by Dr. Alan

Rubin, of long term ATD use. It is in a special shaded box titled

something along the lines of " my treatment preference " . In this

section he says that he prefers ATD use to treat Graves, even long

term ATD use because he has never bought the RAI then one pill a day

line we are told. He goes on to say that if it's just one pill a

day, then why not continue taking that one ATD a day?

I agree with his way of thinking, that's why I've been on Tap for 4

years. If need be, I will gladly take my small dose of Tapazole for

the rest of my life. I'm regulated and happy with my Tap.

Hope this helps!

Doris

> What I need to know is this....I recall someone on this list having

> reported being on Tap for 20 + years. Please tell me...what are the

> risks and have many people done this...stayed on Tap long term??