Re: Hello. I'm a MD and have just joined your group.

[Guest guest]

Hello Dr O!

So glad to have you here! On behalf of every thyroid patient who has

struggled with a thyroid disorder, Thank you so much for caring. I

don't post often here as I have Graves, but my daughter of 17 was Dx'd

with Hashi's (which may have started as Graves with slightly buggy

eyes) after I begged for a blood test for her. We were controlling

things pretty well for a while only rollercoastering slightly, but now

her symptoms are so profound and things have gone downhill so quickly

I am on about every board there is trying to sort out anything I can

do for her to help her. She is a Sr in High school, among the top in

her class and has been dreaming of a career in medicine or

chiropractic. Her brain function has been so affected that I fear she

will not see her dream to fruition if we cannot get a handle on what

is happening to her both mentally and physically. My goal is to treat

the disease of autoimmunity and not only the symptom of thyroid

levels, but cannot seem to find anyone who is very concerned with the

cause, only the symptom. We saw a new endo on Wed. and he his trying

a T4 T3 combo that she started this morning. 4 minutes later she

noticed a slight rash on her lower arms and lower legs which could

very well have been there before she took the drug as she was still

half asleep. She took an antihistamine and we'll see how she

progresses thru the day. I think 2-4 minutes is a little quick to see

an affect like that, but not unheard of for sure. My son has nearly

died from allergies many times, so reactions are something we are

prepared to deal with unfortunately. I just wish I knew which came

first- the meds or the rash!

I would personally like to say " Thank you " for being thoughtful enough

to wander here to try to understand your patients. Your compassion

and interest in your patients is shocking to some of us and it almost

makes me feel personally renewed that ANY doc out there would care

enough to take out the time to do this. If there is one out there,

perhaps there are more. Does your interest extend to Graves as well?

You have my prayers that your research will be fruitful and we may

someday be able to cure the disease instead of merely treating its

symptoms. I thank God you are only an observer and have never had to

suffer thru its effects.

Again, thank you so much for your compassion and thoughtfulness. Hope

to see you post frequently with questions and ideas for us all!

Respectfully,

E (Ellen in Missouri)

>

> Hello. I'm a MD and have just joined your group. I hope it will be a

usefull participation to follow patients' problems here. I hope to

learn more about the feelings of patients here. I don't have any

secondary (economic) aims, cause I live out of USA. I'm one of the

expert & investigator of AIT (autoimmune thyroiditis) but I feel

myself as a simple observer of it, still... Best wishes... Dr.O.

>

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

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[Guest guest]

A hearty welcome to you, doctor. We're glad to have you here.

Just a heads up - you will hear a good deal of frustration and

confusion over treatments here, so don't be surprised. Most of that is

around not being allowed to try different kinds of thyroid (Armour,

for instance), and tests not matching how a patient feels (TSH is

normal, for example, when many signs of hypothyroidism are there). I

think we've also gotten the sense that much more research needs to be

done as it can be a complex disease. And finally, folks seem to

respond to treatments differently, so we maintain respect for

variations between individuals' protocols.

I really appreciate that you're here to listen to us! Please let me

know if I can be of help any time.

(owner/moderator)

>

> Hello. I'm a MD and have just joined your group. I hope it will be a

usefull participation to follow patients' problems here. I hope to

learn more about the feelings of patients here. I don't have any

secondary (economic) aims, cause I live out of USA. I'm one of the

expert & investigator of AIT (autoimmune thyroiditis) but I feel

myself as a simple observer of it, still... Best wishes... Dr.O.

[Guest guest]

Doc, I am so happy that you have joined this group.

I recently had to see a cardiologist, who just happens to have Grave's disease. She, along with her husband, had several questions to ask the Endo , with whom she had an appointment. She said the doctor wouldn't even acknowledge her husband, and she left his office with no better information than when she came in. She said that since Endo is nor her specialty, she is just as confused about her disease, as we are.

On another note, I am having so many problems with this disease and other related autoimmune disorders, and I have been talking to my HR person about what I am experiencing, and though she listens, I am not sure she quite understands what I am going through. What I am asking, is , would all of you be willing to just send me a short email, explaining some of what you are going through? Something that I could pass along to people to understand?

I know this is done everyday on an ongoing basis, but this is something special. The exhaustion I am feeling can't be explained, unless you have this disease yourself, and I want her to know that it isn't just me, but several other people with this disease experience these "symptoms"

Thanks,

Candace

[Guest guest]

Hi Dr.

It would be really interesting to hear your take on it all. Should we

all have our thyroids whipped out and live on synthetic hormones

forever or do you feel there is a chance to avoid that?

Thanks.