Re: Sittin on the fence - Terry?

August 5, 2003

(Terry, I put your name in the subject line because long-term ATD use

comes up later.)

> I thought there was only one ATD - Methomercazole. Are there many

> others.

Where are you? I'm in the US and the two ATDs are PTU (propylthyoruricil

or something close) and methimazole, commonly referred to by the brand

name often used - Tapazole. I think what you're on is a form of the

second. If your daily dose is in the low double to single digits then it

most likely is.

> I am very sensitive to methomercazole i.e. meaning that it works

> quickly. The trouble is that I am left on it for 2 weeks and feel

> very hypo - really sad and weepy, dizzy when I bend over.

What dose do you start at when you start all over? Most people find that

they can stay on the same dose for 4-8 weeks, then gradually decrease it.

For you to have such a strong reaction would mean that you are probably

started at a lower dose than is typically recommended.

> I usually go off it at the end of 2 weeks (having test tomorrow)

Do you go off it to be tested? That is not necessary - at least I was

never told to and this is the case for people who are hyper. Thyroid

patients who are now hypo may have to skip their meds on the days they're

tested.

and

> then start on a lower dose and eventually end up on half every

> second day.

How gradually are you being reduced? Also, I think I may have mentioned

this but I wonder if you would do best on a quarter every day, instead of

half every other day.

I have never had a problem with half every second day

> and wonder why I cannot stay on this regime for ever.

This is where Terry's input would be especially helpful, also with

suggestions for pill splitting. She's been on ATDs long-term, and isn't

the only one.

The endo may

> be really wrong for me in that case, because he is not offering any

> option except RAI.

Not even surgery? Or trying PTU? Though I think it may just be a matter

of making sure you're being administered the ATD properly.

>

> 1.What is the TSI?? Is this the antibody test? If so, I have never

> had one! Should I? What will it tell me.

This, along with gradually decreasing the meds, is what's crucial for

success. There are great articles on antibodies - try checking out Elaine

's on suite101. I'm not as up on antibodies as other people but do

know some of the logistics of TSI (which also goes by other names, which

I don't know offhand). TSI is the culprit in Graves disease, as well as

thyroid eye disease, and it's important not to go off ATDs till it's not

just within what is considered the normal range (less than 130) but

preferrably less than 2. Many endos will scoff at the TSI and say that

since it wouldn't effect treatment - after all, you're on ATDs - it's

irrelevant but it most certainly is not.

> 2.What is the block and replace therapy?

We've had discussion of this lately.

The idea is (and this is very simplistic and possibly not even totally

correct - I base this on what I've gleaned from the list, not any outside

reading on the matter) to go on a very long term course of ATDs, which

suppresses the thyroid, to give the thyroid time to recover. But, of

course if a person is on ATDs for too long s/he'll go hypo. Thyroid

hormone supplement is added to the regimen to balance the excess effect

of ATDs. How BRT is often done in America is not how it's done

elsewhere. Elsewhere this is done over 3-5 years and has a respectable

success rate.

It is possible to achieve remission on ATDs alone when ATDs are properly

administered. My questions for you will help the detectives on this list

figure out if you were ever given a decent shot at it. True BRT is a real

commitment and needs a skilled practitioner, but might be a good option

for you if a qualified and experienced endo is available.

Take care, Fay

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August 5, 2003

Hi Terry

Sydney Australia

My dose is 30mg of methimazone per day for 2 weeks. I go completely hypo during

this time and really drag myself around.

Am going for blood tests tomorrow.

I presume that I will be put on 1 tablet twice per day for 2 weeks.

Then 1 tablet per day for 2 weeks.

Then half a tablet a day. This is the tricky bit because my GP says that the

thyroid is normal now, you should go off it.

This is where I feel I need to take control again myself.

Neither GP nor Endo are interested in me taking ATD for a long period of time at

any dose. I am on my own then.

Will I corrupt my GP by asking to keep me on ATD's for much longer at a really

low dose for a couple of years.

The more I talk to you the more I realise I have to change Endo asap because I

need to talk to someone about your suggestion of thyroid replacement to stop me

becoming hypo on long term use of ATDs.

Cheers Liz

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liz.jameson@...