Re: Starting Tapazole with irregular bloodwork

June 28, 2000

, I'm glad you found this place. Thanks for the help with my Graves'

book. It's at the publisher's and out of my hands. Your story is inspiring,

and I'm happy that you're sharing it.

June 28, 2000

Faye,

According to the current ' Endocrinology Text, there's no way to

predict how a patient will fare based on their symptoms, including goiter

size, or thyroid hormone levels. If your goiter is interfering with

breathing, you might need more aggressive treatment, but if it's just large,

ATD's should work fine. This particular text also says that more than 90% of

patients eventually go into remission using ATD's. The first sign that ATD's

are working is a reduction in goiter size so you're likely to see changes

soon.

June 28, 2000

Faye,

I'm glad you are working within the bounds of your Dr's. care. As for stats

on remission rates etc., I personally never like to listen to statistics and

have often questioned their validity. For example; the 1% chance of

remission that was quoted to you may in fact be based on individuals who

have not attained a remission within the standard 18 to 24 month period,

which wouldn't surprise me at all given that RAI is usually administered so

early in the game. Remissions don't necessarily happen in that short a

period of time. It takes time for the body to regain balance and heal

itself, sometimes years. For me it was a four year journey starting with

30mg of Tapazole a day (just like you are) to 15mg/Week and then eventually

off. I have read somewhere of the more recent studies which seem to

indicate an increase in remission rates with the passage of time. If

nothing else, getting your body back to a level where you only need minimal

maintenance doses of Tapazole is also a real plus; especially if you are

not experiencing side effects from the ATD's. RAI should be a last resort

and should only be considered if you are putting your body at risk from

ATD's IMHO.

Take good care!

PS. Been interesting reading everone's posts for a number of months now; I

thought it was time that I come out of the shadows and post something

myself. : )

Starting Tapazole with irregular bloodwork

> I'm hoping someone may have some info for me. I'm trying to reach my

> primary care physician, homeopath, and a holistic MD. My endo says that

> it's fine for me to start Tapazole (20 mg in the morning and 10 in the

> evening) even though my bilirubin's double the outside norm (and

> antithyroid meds can cause liver damage) and my white blood count's low.

> Not to be neurotic here but might he be setting up me up for failure? (I

> quote him: " We've seen 15,000 patients and no one with a goiter this size

> has gone into remission. " And " There's maybe less than a 1% chance of

> your going into remission and an excellent chance of your going into

> remission with radioactive iodine. " )

>

> Thanks for any input,

> Fay Young

> ________________________________________________________________

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> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

> ----------------------------------------

>

June 28, 2000

Elaine and all,

If the ' Endocrinology text is accurate; I'm curious as to why RAI

is recommended to patients, especially those who respond well to Tapazole

or PTU. I don't know how many hundreds of posts I have read over the years

on this forum and others where the scenario has been; . . . . Just diagnosed

.. . . . went on Tapazole for six weeks (more or less) . . . . having RAI

done. I don't get it!! It doesn't make any sense to me at all. The best

answer my doctor could give me was; " It's just easier to regulate yourself

on thyroid replacement " and, " We'd rather see you a little hypo than hyper " .

Obviously he hasn't lived in the shoes of someone who has been hypo for

years who is unable to get regulated upward.

Any insights on this line of thinking??

Regards,

Re: Starting Tapazole with irregular bloodwork

> Faye,

> According to the current ' Endocrinology Text, there's no way to

> predict how a patient will fare based on their symptoms, including goiter

> size, or thyroid hormone levels. If your goiter is interfering with

> breathing, you might need more aggressive treatment, but if it's just

large,

> ATD's should work fine. This particular text also says that more than 90%

of

> patients eventually go into remission using ATD's. The first sign that

ATD's

> are working is a reduction in goiter size so you're likely to see changes

> soon.

>

> ------------------------------------------------------------------------

> P.S. - You have to check this link out, it's pretty funny.

> http://click./1/5994/6/_/585824/_/962220423/

> ------------------------------------------------------------------------

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

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

> ----------------------------------------

>

June 28, 2000

,

Why has it got you in a dither?

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June 28, 2000

Hi ,

The big reason for RAI's prevalence in the U.S. revolves around its

discovery. When it proved to do the job (of killing thyroid cells) its main

discoverers and supporters were the country's top endos. They, in turn,

created the treatment guidelines which are taught in med school. Without any

long-term studies, RAI was declared quick acting and effective. Little

thought was given to the effects of hypothyroidism, and the autoimmune nature

of GD was unknown at the time.

The proponents of RAI never considered long term or genetic effects and they

considered RAI basically safe, although early studies showed an association

with thyroid cancer and irradiation. Actually, initially, early researchers

thought RAI was unsafe, but results of a large cooperative study in the U.S.

and England indicated otherwise. According to Dr. Gong, the effects of both

short and long term irradiation were miscalculated.

Also, it's traditionally been suspected that GD progresses to thyroid storm.

Now that the autoimmune nature of GD is known, docs know that the course of

GD for individuals is variable. Still, the idea of progression to thyroid

makes docs leery of being hit with a malpractice suit. If a patient suffers

untoward effects from hyperthyroidism because the doc hasn't used aggressive

treatment, there is a potential for lawsuit. However, the only patients I

know who went into thyroid storm had it after RAI which is then considered a

side effect or consequence. And if the patient becomes incapacitated due to

hypothyroidism, it's considered treatable and debilitating symptoms are

attributed to GD or imagination, not to hypoT. If the patient gets cancer,

it's difficult to prove what caused it (in a lawsuit).

Thus, given these politics, many docs find RAI easy... since little follow-up

is required. It's cheap and insurance companies like it. ATD's require office

visits, lab tests, medications, that prolonged, are more expensive.

The group of endos who contribute to ' Textbook and a number of other

endos are beginning to question the use of RAI. They recommend using ATD's

for a minimum of 18 mo. before deciding on a permanent treatment plan. That

way the natural course of GD can be ascertained and taken into account.

The largest supporters of RAI are those groups influenced by cost cutting

measures. In some cases, physicians are paid a certain amount (by insurance

companies, Medicaid) for each diagnosis. If they're only paid x amount of

dollars, they lose money by dragging things out. Lots of politics are

involved, but with hypo patients becoming more vocal about their complaints,

the tide is bound to change.

June 28, 2000

Hi Fay-

I think it's disingenuous to say that patients with Graves' go into remission

after RAI. Although I guess it's

technically true since hyperactive symptoms would eventually be reduced, I

think it implies that the underlying

problem is better. For example, when someone is remission from cancer, the

cancer cells are gone. Not so with RAI,

your autoantibodies are still there.

When you have RAI, thyroid cells are destroyed so it's no longer possible for

you to be hyperthyroid. But thyroid

cells aren't the real problem, the autoantibodies are. So when you have RAI you

are targeting something that's not

the real problem. What I'd consider a real remission is the reduction in

autoantibodies produced which happens with

people that have gone into remission on ATDs.

Hey you guys! They finished the human genome project and that has me all in a

dither.

Take care,

Utecht

F Young wrote: