Re: To Tosha

[Guest guest]

Hello Barb and thank you so much for taking time out to help my daughter and I

with this big decision. I feel so scared of what may lie ahead for her. The

only question I can think of to ask the group now is does everyone with GD have

eye problems, almost everyone, or just sometimes?

Re: To Tosha

Hi Tosha -

I know you've already heard from many of us, but you

did ask for any and all responses, so I feel the need

to address this as well.

I have Graves' myself, and I have had two of my

doctors (one endo and my allergist) tell me that I

should have my 12 year old daughter's thyroid levels

checked. I believe this is only because I have

Graves', but they feel she should be monitored just in

case, since it does run in families. Now, I had

mentioned my Graves' to her pediatrician on several

occassions, and sometime back asked him if he should

test her, and he thought it was just me being a

worrier, which I am. At that point, he actually told

me that she was tested at birth. (As if that means

that she still must be fine now, twelve years later??)

He did ask me if I wanted her tested, or if my doctor

wanted her tested. At that point, it was just me.

Now, as I said, two doctors have asked me to have her

checked, and I will do that.

IF there is a problem, I absolutely will NOT allow

them to do RAI on her. Absolutely no way! In my

opinion, that is not a decision that one person should

make for another. That should be a decision that the

patient herself would make as an adult, as you are

killing off an organ that affects just about

everything else that goes on in the body. (As you have

been advised by others, the problem is not with the

thyroid, it's the immune system.) Obviously a child

cannot make that decision for herself - she is not

armed with enough information, and wouldn't understand

it anyway.

The endos are really quick to recommend RAI - in my

case I am very fortunate that my GP diagnosed my

Graves', and his first line of defense is always

anti-thyroid drugs, although he did tell me the other

options. The two endos I've seen since would both

recommend I have RAI. Not gonna happen. And I have

to say that my ophthalmologist helped me as well. I

REALLY wanted to avoid any more eye involvement - mine

is pretty slight so far. I asked him if I had the RAI

would that prevent me from having more eye

involvement. He told me that he has seen people have

the RAI and shortly thereafter their eyes just " pop "

(sorry, his words!) That was pretty much all I needed

to hear. My thanks go out to him!

It was after that that I found this list, and saw

's photos. I can't tell you how badly I feel for

her, and for the others who just followed what their

" specialist " doctors recommended, and wound up so very

sorry that they did. I know that in my case, and if

it comes down to it with my own child, I would NOT

choose RAI.

The other thing I wanted to mention is the fact that

your daughter would not have to go to the hospital

each time she had a sore throat or fever, unless you

go to the hospital lab for your lab work. It's not as

though you have to be an in-patient. I've had to have

a CBC done several times since starting Tapazole in

February, and it's just a blood draw at any lab.

Traumatic for a child, I know, but it's over quickly.

The possible results from RAI are not.

If was on ATD's, she would stop her med when she

realized that she had a sore throat and/or fever, and

her doctor would order a blood test for her. You

could even ask if the doctor might write you an order

just in case you need it, and that would save you some

time if she were to get sick. I know that if I wait a

couple of days for testing and getting results, I feel

the lack of med in my system, and my symptoms return.

I have learned that they can get your results " STAT "

and so I have been able to go right back on my meds,

rather than wasting valuable time and not keeping my

thyroid levels as steady as I would like.

I also wanted to add that I would not want my daughter

to come back to me in later years when she knows more,

to ask me why I opted to give her RAI instead of

giving her the chance for remission. I think that

would be horrible.

Sorry this is so long, I just feel very strongly about

this. PLEASE don't feel you have to decide this this

quickly - please don't let them pressure you to do

this to your child without knowing all the facts, and

how your daughter may feel long-term as a result.

Barb

[Guest guest]

The only question I can think of to ask the

> group now is does everyone with GD have eye problems, almost

> everyone, or just sometimes?

Someone will probably offer a link to the statistics, which should prove

reassuring. Realize that some of our members have dealt with worst-case

scenario experiences that aren't too common - people who somehow sail

through this don't look for support groups.

I for one have had absolutely no eye problems, thank G-d, other than

pressure that accompanies occasional sinus infections. Graves may have

been a factor since I never had sinus trouble before.

Take care, Fay

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