[Nat82]

#1058662

Is there anyone who was diagnosed with GD as a child (I was 12 when I was diagnosed, full thyroidectomy at 15, I’m about to turn 30)?
I’m asking because I’ve been reading posts all day and I’ve noticed that 99% of the replies seem to say "you will feel normal again". I don’t remember the last time I felt normal; maybe in grade 4 or something. Mine has been a battle in every way, and I feel crazy… all the time. I promise you I’m not just being negative; I’m generally a happy person, crazy but happy, and I have a bright outlook on life in general but I know what GD has done to me, physically and emotionally.
Can anyone relate to this?
Nat

[VanIsleGal]

#1169232

Your story is so disappointing. Have you talked with an endocrinologist? I haven’t had my surgery yet, but I hope to feel much better after. I have had Graves’ 3 times now and in between, during remissions, I thought I should have felt better. I read a book awhile ago (forget the name) and it talked about disability for some people after treatment.

I hope you hear from others that can relate.

xoxo

[adenure]

#1169233

I’m curious about this, as I figured that if someone has a thyroidectomy, he/she takes the synthetic thyroid hormone after and is fine. Wouldn’t the right amount of thyroid hormone make your thyroid levels normal and then you would not have the symptoms of either hyper or hypo thyroidism? I haven’t really researched the surgery much as I’ve been on methimazole for almost 6 weeks (I was just diagnosed 6 weeks ago) and it seems to be working. But, I wondered how the surgery works if I ever had to do it or opted for it. I guess I just assumed that it’s a guaranteed “normalizer”- that synthetic hormones always worked and, with the right dose, your thyroid levels would normalize without any issue. Am I wrong in thinking that?
Forgive me, as I’m pretty new to all this.

Alexis

[snelsen]

#1169234

Hi Alexis,
generally, things go along just fine, and you do stay on the same dose for years on end. Short story made long by the following conversation, when the thyroid is gone, the pituitary gland does not have a gland to regulate. So, the doctor and you do that, by how you feel. But it happens, especially in women around hormonal changes, that you just don’t feel “right.”
Remember, before all this Graves business, the body does small adjustments all by itself, and we are not aware of it. The anterior portion of the pituitary gland senses how much thyroxin we need, and it sends it to the thyroid gland. Just like the pituitary gland regulates growth, and lots of other stuff. If you feel good, and most people do, it is working fine. But if you feel lethargic, and begin to gain weight, and you know it is a change, hopefully, the doc will check thyroid levels, in both men and women. But much more common in women.
So, without a thyroid gland, the pituitary gland cannot do those subtle changes to keep us feeling “just right” as it did when we had one.

That is the time to see your regular doc or your endo. I have thyroid labs every year or so.

Sometimes, women (especially) end up on thyroid hormone because they have been tired, or maybe some other signs of hypo, end up on thyroid hormone. In this case, it simply is not working quite right, and the thyroxin that is being produced, is not enough to maintain an optimal euthyroid state.

The big message is that the body does it in a feedback look from the pituitary gland to the thyroid gland. When it is gone, the endo and you, based on how you feel and your labs, get it right with the dose of thyroid hormone we take every day.
Shirley

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