just FYI as suggested by Terry

[Guest guest]

Hi, there,

After I posted last week, I got a few reponses. As Terry suggested,

I posted these posts here. Hope it will be benefitial for friends

here.

Many thanks

Liang

From: " leon_lz " <leon_lz@y...>

Reply-To: graves_support

Date: Sat, 18 Oct 2003 21:57:24 -0000

To: graves_support

Subject: thank for your support

Thanks everyone here who replied or took time to read my post. Yeah,

I got RAI last week. I have been on PTU for almost 6 years. During

the last 6 years, I have been on and off for 3 times. I started with

450mg per day and got to a point only needed to take 25mg per day.

But after got off 3 times, I needed to take 450mg per day again and

the symptoms were not well control.

I am working in research lab and got access to a lot of resources

and also got support from here as well. In a certain degree, I am

well informed. Just each after the endo weaned me off from PTU,

hyper symptoms just kept coming back, each time i had to double the

dose to control it. It got to a point that 450mg PTU just barely got

it control well. So after some struggle, I decided to take the RAI

last week. This is the second week after RAI. I still felt a bit

hyper but not as bad before, still need beta-blocker. and the

radiation counter does buzz but not as bad as last week. I drank a

lot of fluid, i mean a lot.

I will go back to check TSH in 6 weeks. If TSH is still very low,

then I am really not sure if I want to go through this again.

Thanks, everyone

Liang

gaves since 97

in this group since 01

Liang,

I hope you do well and remain comfortable with your decision.

Having not had

RAI myself, I can't add much there--but I do have a question: each

time you

were weaned off of the PTU, was it because your antibodies were

2% and

staying on any ATD made you hypo, or was it because the doctor

said " time's

up " in one or another way?

I am asking this because I have chosen the course of staying on

ATD's, and

had one time where my levels got to the logical stopping point

including low

TSI, and then I relapsed, just as you seem to have done. I thought

at the

time that it was due to switching brands of generics, but now I am

not so

sure. I had to up my dose after my relapse to 12.5 mg. of

Tapazole, and

gradually wean down again. I've been back on a low maintenance

dose for well

over 6 months, and in the last few weeks have had to raise the

dose a bit

again. I started to get a bit hyper again, much to my surprise.

I am trying to figure out if this is some sort of " seasonal "

fluctuation, or

if my very low dose (about 2 mg. of Tapazole/day) was just too low

to have a

long-term repressive effect on the thyroid hormone production. Now

I'm back

up to about 3.75 mg. (I hedge myself there because the pills are

so hard to

split evenly).

It's my intention to stay on ATD's for the rest of my life if I

have

to--I've had no adverse reaction to them, I am just trying to

figure out

what the optimal way of managing my thyroid health on them is.

Thanks for any input you may have from your experience,

Terry

Date: Mon, 20 Oct 2003 22:52:41 -0000

To: Terry ding

Subject: From Liang

Dear Terry,

Thanks for your support and wishes.

Here is my situation:

1. family history:

I have very severe family history of Graves. My

mother's family had some kind of gene mutation, I

guess. (ironically, I am a molecular biologist:))

Five out of six of the siblings developed

Graves so far. One got it at age of 14 which actually

evetually outgrew it for some unknown reasons.

Two developed into graves in their 30's and actually were on Tapzole

for 6-8 years(maybe longer, I forgot how long, it was long),

evetually they recovered in their 40's. One is in her

50 and had graves for 3 years and is still

battling with Graves along with Tapzole and hormone supplement. My

mom is the only one got RAI in her 20's and she is on replacement

even since. She is in good health condition otherwise and needs to

get bloodwork once a year. My sister got thyroid cancer last year

and she had surgery and still in a process of follow up. Her

prognosis is very good because of her age, cancer type and cancer

stage.

2. Illness history:

In 97, I was working on my startup company, a biotech

firm, which eventually I sold. I worked like crazy for

3 months. At the end of 3 months, I

knew something went wrong with my health condition. In

an early morning, I got a mug to get coffee, but my

hands started shaking and I spilled most of my coffee.

Because of my family history which had alarmed me with

early signs of Graves, I called my physician the very

next day. After blood work then uptaking test , I got the

diagnosis for hyperthyroidism. Since I got all the

strings I can pull for working in a medical center, I

got the appointment the very next day after the

diagnosis.

3. treatment history:

My endo only believes in I-131 in most of graves cases based on his

experience in the past 30+ years, which can

save a lot of time as a quick fix for most of people, he said only

see no more than 20% actually can go remission without relapse with

anti-thyroid medication after prolonged period on medicaiton though

they can get controlled. I believe to try conservative treatment

first with any non-life threatening disease. I also want to try it

because of my uncle and aunt's story. I was on PTU for 18 months, I

started with 450mg per day which put me to hypo. After two

adjustments, eventually, I was stabilized at 25mg per day. I was

instructed by my family members to continue it for

another 2 years while getting blood work every 8

weeks. However, my endo told me that usually 18 months

is enough time to see the effect if I can go

remission based on some clinical trial, which I also agree based on

some of the literatures. So, I stopped. I was good

for 3 months. Then I visited Shanghai, my birth place. I was very

tired after the trip. 3 months later, I was hyper

again. Between RAI and PTU, I decided to give PTU the

second chance, but it never worked as well as the

first time, 18 months later, I stopped, It came back

just in 6 weeks. I knew it was not going to work out with the

medication. Just because of the family situation (my wife was

pregnant), I just went back on with PTU to buy some

time to do the RAI after her delivery.

4. final decision:

After my sister's diagnosis for thyroid cancer last year, I

just wanted to get rid of my thyroid gland so I

furthered my decision.

5. suggestion, just my personal view

From my point of view as a patient, a family member and a

researcher, if you continue your medication from the very beginning

and never stopped and you have a good habit to take medication and

get regular followups, you might have a better chance to benefit

from medication alone. but remember that not everyone will go

remission without replase with anti-thyroid medication and many of

them do need to do RAI after years and years of medication to

achieve more peaceful life. I understand, the group is very much

anti-RAI. But we have to face the fact and be realistic if

medication does not help to achieve remission. Supplement of some

thyroid hormone while being on anti-thyroid medication will help to

achieve higher remission rate. I have literature to support this

theory. But medication (both anti-thyroid medication and hormone

have to be monitored constantly just as anti-thyroid medication

alone). If PTU fails, you may try Tapzole, which I should consider

but I am just tired of even just thinking of being on medication for

another 6-7 years without a fix. Though I can understand graves is

an auto-immune disease and RAI just fix one thing but not all

problems, however, we have to remember not all auto-immune disease

will recover and RAI only causes problems in small portion of

patients after treatment. If you do not have an eye problem, you

will have much less chance to develop it after RAI,this theory is

the same as I learned form medical literature, which is also one of

my reason to choose RAI. From my mom's case , she never had any

other complications after getting RAI in her 20s and she never had

much eye problems to start with.

All right, hope my story did not bore you and will give your

something you might be looking for.

And good luck with your endeavor.

Take care now.

Liang

Hi Liang,

Thanks for such a detailed post. I understand why you sent it

directly to me, but I always wish that the group could share in such

posts, because we all learn from them. Perhaps you could edit it

down and send it to the group, too. If you do, I'll also re-send as

much as I feel comfortable sharing with the group of my answer, as

well.

I, too come from a family with a thyroid history. What you say about

your mother makes me wonder--mine had thyroid cancer before I was

born, and a total thyroidectomy plus probably radiation (I don't

know, since she died from esophageal cancer before I got GD, so I

never thought to ask her these things). This was in the 1940's. So,

I wonder if the fact that your mother

had RAI in her 20's (I assume before you and your siblings were

born) might have something to do with all of you having thyroid

disorders now.

I wish we could keep better statistics on such things. We'll both

never know, huh?

I suspected that your failure with PTU was because they took you off

the meds at 18 months. It seems to be a common problem, this idea.

I'm not sure where it comes from--our bodies don't simply say 'oh,

18 months is up, I am better', do they? At least, mine doesn't. I

have had one small remission, for a few months. I have a stressful

life, and I believe strongly that I have had GD, undiagnosed and in

perhaps a mild form, for many, many years before my symptoms got so

bad as to send me to the doctor.

I'm content to stay on Tapazole for the rest of my life if I have

to. RAI scares me, totally. I'm the one who wrote (with a lot of

help from the group, especially on the citations) the " top 20

reasons not to have RAI " list. It's on the home page in Files.

Partly I'm afraid because of my mom, and partly, because I knew one

lady who had it when my sons were growing up,

they were friends with her son. Well, she was a normal, normal-sized

woman--and after RAI she gained 150 pounds! I don't think I could

stand myself as a 300 pound woman, honestly. But the strongest thing

is my mom's esophageal cancer. I can't help but think it was either

lurking thyroid cancer that metastasized 40 years later (if that's

the right term) and moved to her esophagus, or, that the radiation

she probably had caused the future cancer. I don't trust radiation

in any form, it's just not logical that we cure with something so

deadly.

Anyway, the logic for me of zapping the thyroid, when it's the

immune system that is wacky and simply attacking the thyroid, is

just not there. It seems to me to be an open invitation to the

immune disorder to attack somewhere else, such as the eyes. And, I

know people with the eye disease, it's not pretty. They have ended

up with decompression surgery, pain, and misery. Unable to work,

drive, even read. I couldn't take that!

We all make our choices, and I do hope yours works well for you. I

hope you stayed away from your baby after RAI, too. That would be a

real threat, I think, to have that radiation near a newborn. But I'm

sure you knew that and took all the appropriate precautions.

One thing that's helped me considerably is Chinese herbal medicine.

My husband, who is not Chinese, studied and has his Masters and

licenses, and practices acupuncture and herbal medicine. I believe

I've had an easier time with GD than many because of the herbs I

take daily.

Your being a biotech start-up kind of person makes me suspect you're

also a Californian, am I right? I'm in the east bay.

Nice to talk with you!

Terry

Terry,

Good to hear from you again.

I would think your mom might not receive any of the

radiation following her total thyroidectomy. My

understanding is that the I-131 was not used in 40's.

In past 50 years, there were a lot of documents about

its safety. They indicated there was no increased risk

of cancer or other disease in the patients who

received it. But I am not sure about the effects on

the offsprings.

You are right, my mom had her RAI before she had us.

Seven years after she had RAI, she had my sister then

me. I would think my sister's and my thyroid problems

are more genetic linked because of the family history.

We just can not tolerate too much stress. She was working

on her startup for couples, then she got thyroid cancer

So, relax.

PTU and Tapzole are quite safe in most of patients.

But make sure you check your CBC and liver function

periodically. As long as you do not develop reaction

to the medication, as long as all the symptoms are

well controlled, as long as you do not get on and off

as I did, you can stay on medications for the rest of

your life. But keep in mind, should you develop any

bad reaction to the medication or symptoms get worse

even with high does of the medication, you might have

to think about something else, such as sugery or RAI.

Compare to sugery, RAI is a more preferred method

nowdays after numerous of studies and clinical trials.

After all, RAI might not be as bad as most of people

think. I am a scientist, I only believe in solid fact

from study based on large statistics instead of

assumption or individual case. People just got too easy

to be freaked out about radiation, do people work under

the sunshine, hehe, there is radiation there. So, does

that mean we should avoid sunshine?

I am a molecular biologist in School of Medicine,

Washington University at St. Louis. Too bad, middle of

nowhere:), I would love being the sunshine state.

During daily experiemnts, we use a lot of P-32, P-33,

S-35, I-125 and other radioactive material. A lot of

people just got freaked out even just hearing about

radiation. But it is not the atomic bomb, some of the

radiation even can not penetrate your skin, such as

S-35.

My sons are 3 and 5. They are doing well. I am still

trying to keep a distance from them for 4 weeks after

I took the I-131. If the counter in my lab can not

pick up the signal, that means safe. So I will keep a

proper distance from them until the counter stops

buzzing.

All right, so much for today. As you suggested, I will

edit the post and post it in the yahoo group.

Take care and best of wishes.

Liang