[Wubbie]

#1058648

So I have all the symptoms of being hyper, weight loss, rapid heart rate from time to time, I have an enlarged thyroid, right side is 5.2x2x1.9 cm and left is 5.3×1.2×1.8 cm, mildly thickened 4mm, multiple nodules varying in size. My levels have been normal, and am as of this moment waiting for the antibody to come back, but the most recent labs, were all normal. I also have a condition called Neurofibromatosis (NF) which causes tumors to grow anywhere on the body.
In May 2011 the endo said it is reasonable to consider surgical removal given the 5% false negative of the FNA and the history of NF if my symptoms change but she says I appear, physically hyper.
I have had to FNA’s done in the past, all negative.
I have had moments of rapid heart rate here and there, but on 9-16 it happened and lasted 2 hours and if my machine was right it measured 151, then 5 days later it happened again, lasting 2 hours and measuring 171. Holter monitor showed nothing but early heart beats and now they want me to do an event monitor for 2 weeks.
I am just thinking about waiting for the antibody to test to come in and depending on that, then going back to my endo. Wondering if anyone has done surgery even with "normal" levels but with a goiter and nodules?
Also, how big is a normal thyroid?
Thank you so much!
Megan

[Ski]

#1169172

It’s especially difficult for us to give advice to someone who isn’t dealing with the disease we’re battling, so I’m not sure how much we can be of assistance here. I think thyroid size is likely not exact from person to person, but again, not a question I’ve needed to answer before. For most of us, you can tell when your thyroid is "enlarged," meaning it bulges out of your neck, but "normal" may not have the same dimensions from one to another.

One of the most difficult aspects of Graves’ is that the symptoms mimic those of so many other conditions, so if you are experiencing Graves’ symptoms, it may well be true that those symptoms ARE from another condition, especially given your other results. That’s something you’re going to have to wait and discuss with your physician. I do hope you have someone you trust — make sure you write down all of your questions before going in, because it’s always tough to remember them, even more when you’ve got symptoms you’re concerned about, and even more when you’ve got symptoms that make it harder to remember…

Please let us know how your tests come out, and I hope you find a way to health soon!

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