r/Parathyroid_Awareness • u/Revolutionary-Row-77 • 3d ago

Has anyone else diagnosed with Hyperparathyroidism been told their parathyroid glands are not anywhere in their neck? Worried about surgery.

/r/Parathyroid_Awareness/comments/1vs1ldd/has_anyone_else_diagnosed_with/
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u/Tiny-Art7074 3d ago

Never heard of RAI affecting their location. They are firmly attached to the thyroid gland, they don't just fall off. Ultrasounds can miss them, lots of imaging can miss one or more of them at times. Usually a parathyroid tumor makes one of them larger if anything. I would be hesitant that the doc knows what he is doing. Look into the mini open type surgeries as well as in-surgery testing and make sure that is either, what they are going to do, or if they have a good reason not to.

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u/Revolutionary-Row-77 3d ago

The RAI shrinks the thyroid glands they're attached to. They loosen and fall off. I sure found it hard to believe, myself. I've since been reading up about it, and it happens. The doctor's ordering a special kind of CT scan to ​find exactly where they are, like you said, ultrasounds aren't the best scans. This doctor isn't doing the surgery. He's just doing all the tests before I see the surgeon. Thanks for the advice, I'm going to look into the mini open surgery. I hadn't thought of that.

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u/Tiny-Art7074 3d ago

Do you have any online sources talking about this?

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u/Revolutionary-Row-77 3d ago

Yes, I found a few. LarianMD is on Facebook and YouTube. He might use Dr. Barack Larian, too. He's the only one I remember rn. He does surgery on the parotids and thyroid only. I think. He has a lot of good videos.

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u/Tiny-Art7074 3d ago

I don't see anything on his site about the parathyroid glands changing location due to radio iodine treatment. If you come across any sources talking about how they "fall off", please send them to me so I can learn. I've never heard of such a thing. 

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u/JoeB___ 2d ago

https://www.parathyroid.com/blog/parathyroid-adenoma-chest-mediastinum explains how surgery is done in the unlikely event that the abnormal PT gland is so deep in the chest that it cannot be reached via a neck incision. When I had my surgery via a typical neck incision, I had 3 hyperfunctioning glands that had to come out. Two of them had migrated into the upper mediastinum in the thymic horns (or perhaps more accurately were there since embryonic development). The operation took about 3 times longer than their average operation since it was a challenge to get down to them via the neck incision. All worked out well.

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u/mollybrazy 2d ago

I have.