Not me (I have just normal Graves), my 19-year-old daughter. Labs say hypo. Uptake scan says clearly Graves (hyper). Antibodies say clearly Hashimoto's (hypo). Symptoms say hyper. Endo says: I can't treat this until it declares itself.

I think she has Hashitoxicosis, which is Hashimoto's (hypo) with frequent hyper surges. Evidently that's one of those diseases that doctors don't believe in. Even if they did, how to treat it? You can't suppress if she's hypo, but you can't give her synthroid if she's also hyper. I suggested the "block and replace" treatment--suppressants to shut her thyroid down and synthroid to bring her up to normal--but my endo said, "Oh, no, we don't do that any more! That can really mess you up." That may be true. I don't know.

Here we go again. This reminds me so much of my own MG journey. She's obviously sick and even has some numbers on paper to prove it. But evidently when the numbers don't match the symptoms, the numbers win out.

I guess I'm just venting, knowing that all of you will understand my frustration. Thanks.

Abby

Abby, Have they done an MRI? Specifically, a pituitary MRI? Could she have a pituitary adenoma wreaking havoc?

You know how the body compensates, how it has all these built in systems that TRY to balance an imbalance? She could have an immune attack on the thyroid (due to the antibodies) and the pituitary - when it senses a lowering of TSH - kicks in too far and gives her too much sometimes.

It may be more than one thing. It's entirely possible! A person can have two different cancers at one time. What if she has an attack going on to her thyroid and has Graves too? Sort of like thyroid menopause.

I dunno. Maybe a second opinion would be useful from another endo. Is your daughter on any birth control pills (not trying to get too personal!). Sometimes regulation of other hormone levels can help.

I think you should make sure there isn't a microadenoma of the pituitary. Yeah, the TSH secreting one is rare but so what? Lots of things are rare but people still have them.

I'm sorry she is suffering so much. Have they done an ECG to make sure these changes aren't adversely affecting her heart?

Annie

Annie, you're good. I'm in awe. Yes, her doctor ordered the MRI looking for a TSH-producing pituitary nodule or whatever. It's scheduled for Tuesday.

Well, when her first thyroid test last fall came back normal, we thought for a while it was PMDD (wicked PMS) because it does seem to be worse according to her cycle. Tried birth control pills for a while, but they didn't help. or made it worse.

Yup, EKG and echo, because before the tests started coming back abnormal (she tested hyper briefly) they couldn't explain her heart racing.

Well, Annie, thank you. I feel much better now. If her doctors are actually living up to the AnnieB3 standard of care, then I know she's in good hands! Not only that, she has me to take care of her, and I have some experience in this medical-mystery-leave-no-stone-unturned-research-and-grueling-persistence game!

I really do feel better. Thanks.

Abby

Abby, Thank YOU. I'm laughing my behind off. I've been on a daily crying spree since Teddy died. "AnnieB3 standard of care?" Too funny. I think they need a "sensible" standard of care instead of their unyielding "gold standard" of care.

How's her BP? Temperature? It's good you know what signs and symptoms to look for, in case things get worse.

It's not so much me as having a good endocrinologist years ago that took me seriously. They still have to watch me for a pituitary adenoma.

I hope they figure all of this out. I would be VERY wary of gadolinium during an MRI. I hope you will research that drug thoroughly. It can cause kidney failure in some people that is irreversible. They swear they need contrast for an MRI to find a small tumor but is it worth the risk? They seemed to have seen my pituitary just fine without it. I don't have a "bright spot" on it, which can be a normal finding.

Way too much info in this article but it's interesting.

http://www.endotext.org/neuroendo/ne...endoframe4.htm

Well, I'm glad you feel better. It sounds like you have good doctors, which is half the battle. I hope your daughter knows how lucky she is to have such a fierce patient advocate on her side!

Annie

Abby,

How frustrating!

A thought I had...I've heard that seaweed can help to regulate a thyroid that goes up and down like you have described, and seaweed doesn't have side effects like medication. Of course, don't have her try this on my suggestion alone, talk to a doctor first, maybe even do some research. I don't know enough about thyroid problems to know personally if this is helpful, just remembering what was said by other people with thyroid problems. I imagine that eating more iodine in some cases could be a bad thing to do when it comes to the thyroid.

I wish your daughter the best.

Abby,

I would strongly encourage you to read the books by Dr. Lee "What Your doctor May Not Tell You About Premenapause" and "What your doctor May Not Tell You About Menapause." I've noticed that Hashimoto's is discussed in these books as a hormone imbalance that may be fixed through natural hormones. I do understand your frustration in your journey with graves, as I have had my own, and I can only imagine watching your child go through this.
Keep your head up momma!
Christel