ATDs

[Guest guest]

Personal Perspective

What you need to know about Graves Disease

I was diagnosed with Graves Disease in March 2000. My diagnosis came

fairly easily, thanks to my OB, who ran a routine TSH as part of a

early visit. So I quickly connected the dots of my symptoms which

included rapid weight loss, rapid heartbeat and elevated blood

pressure, anger and anxiety, muscle weakness, and split nails. I

didn't start treatment till June, when my endocrinologist agreed,

with some arm twisting, to start me on Tapazole. I decided on

antithyroid drugs (ATDs) after learning that my thyroid wasn't

diseased; my immune system was causing my thyroid to produce extra

hormone. Suppressing hormone production made much more sense than

destroying my thyroid. I stayed on Tapazole till August 2001 and

have been in remission since.

Graves Disease, more than any other condition I've encountered,

taught me the need to become as informed as possible, to get copies

of all my records, and to accept the possibility that sometimes the

most accepted standard of care recommended is not in the patient's

best interests. Many doctors rush patients into RAI without giving

the patients time to make an informed decision. RAI is a serious,

permanent treatment. Hypothyroidism almost always results,

necessitating life-long HRT (which can be especially difficult to

modulate after RAI).

Please check out the sources below for solid info you may not be

aware of. If it all seems complicated due to thyroid brain fog, join

the support group and don't be afraid to ask anything.

This was all a wake-call for me and led me to make some major

changes, such as better nutrition and supplements and stress

reduction, which may well have played an important role in achieving

and maintaining remission. What I would like to focus on here is

what I learned about anti thyroid drugs (ATDs) during the course of

my treatment. Many patients have been told that ATDs didn't/won't

work for them, but more likely the ATDs weren't administered or

monitored properly. I'd like to offer some basic guidelines for

achieving success with ATDs:

1) Preliminary blood work before starting ATDs:

a. liver enzymes and CBC. While ATDs can cause these to become

dangerously elevated

hyperthyroidism also causes elevation. A baseline is useful. These

tests will also be done monthly for the first month or two.

b. antibody testing, particularly TSI (thyroid stimulating

immunoglobulins). This is useful for the diagnosis of GD and is also

an excellent indicator of remission so it should be done again when

the patient is on a minimum dose of ATD and otherwise ready to be

weaned off medication.

2) Regular monitoring

a. Regardless of when your doctor wants to see you, don't go longer

than 6-8 weeks without having blood work done.

b. Some doctors encourage the patients to have the blood work done

about a week or so before the appointment so the results will be

ready for discussion in person. (Nice and sensible idea, isn't it?)

c. Routine testing will include: TSH, which is a useful screening

tool but should never be relied on alone for treatment. It can stay

suppressed in a hyper patient for extended periods, even once the T3

and T4 go down into the normal range. The Free (not Total)

T3 and T4 are much more accurate assessments of how much thyroid

hormone the patient has available.

3) Dosage - prescription changes should ideally be in very gentle

increments, no more than 5 mg. (or 50 for PTU). Larger increments

can be a shock to the system and cause relapse or other

unnecessary distress.

(Sometimes a larger dose reduction IS in order, for example, if the

patient starts at a very high dose, or if the medication brings levels

down fast.)

4) Miscellaneous

a. Never stop beta-blockers cold turkey. Ask about weaning gently

once on ATDs.

b. Reactions to ATDs: Itching (absent of anaphylactic symptoms)

isn't necessarily a reason to stop. It may not signal an allergy but

either that an inappropriately high dose was prescribed, or a

temporary reaction that will go away once you're used to the ATDs.

Benadryl and Aveeno maybe helpful. Ask your doctor. Also, itching,

especially on the

arms/hands and legs/feet is a symptom of GD. Sore throat: Can also

be a symptom of GD. Have a CBC to determine if it's caused by the

ATDs. (White blood cells will be suppressed.)

c. If you have a serious reaction to one ATD you may still have

success with the other and should I insist on a trial.

d. Don't accept an arbitrary cutoff date to stop ATDs. They can be

safely taken for longer than 12-18 months. If your doctor is worried

about reactions, let him/her test for them. Stopping prematurely can

lead to relapse.

I'm not a difficult patient but I'm on my fourth endocrinologist! I

think he's a keeper.

Suggested sources:

Turn on your printer and get out a yellow highlighter. I started

with the support group. The homepage has a file section and links to

invaluable info such as an annotated list of 20 reasons not to have

RAI, a letter to family members on how to cope with a loved one with

GD, questions to ask a surgeon, hyper and hypo symptoms lists, and

much more. Book: Graves Disease: A Practical Guide by Elaine ,

available through Amazon or and Noble

http://groups.yahoo.com/group/graves_support/

http://www.mediboard.com/cgi-local/ubbcgi/ultimatebb.cgi?ubb=forum & f=1 & D

a

http://daisyelaine_co.tripod.com/gravesdisease/

http://www.ithyroid.com

By: Fayge Young Fay cfyoung2@...

(This is a rough draft of an article that appeared in the Spring 2003

newsletter of the Michigan Thyroid Support Group. Though I originally

sent this to the group, the same version appeared in the newsletter with

a copyright by Green, the group's organizer so I want to

acknowledge her.)

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