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Old 03-07-2011, 08:04 AM   #5
Join Date: Aug 2010
Posts: 9
falkenkb HB User
Re: Pituitary Resistance to Thyroid Hormone


Thanks for the info.

My daughter sees a Pediatric Endocrinologist out of Mayo Clinic. Her doctor has not seen a patient with RTH this young before, but was very knowledgable about RTH from the start. She also saw a Geneticist at Mayo clinic to test for RTH, but under their current knowledge...she tests negative for RTH. Apparently 10% of people with RTH will have a negative genetic test for it...but they still do have RTH. He is hoping in the future there will be more tests available as they learn more.

I'm not sure why they want to take her off the atenolol. I think they are hoping that her symptoms go away as she gets older. She is currently taking 18.75 mg per day...which is 3/4 of a tablet. They keep saying that most people with RTH don't have symptoms because their cells are resistant to the thyroid having excess hormone doesn't create symptoms since those cells are only getting the amount of hormone they need...not extra. They figure my daughter's problem is that not all of her cells are ones that ARE resistant to the hormone aren't getting enough hormone...which results in her body making more thyroid hormone because it thinks it doesn't have enough. There is plenty available...but the cells aren't letting it in, so if there is extra hormone...then some of it will get in eventually...whether the cells are resistant or not. They figure that the other cells throughout her body are NOT resistant, and these cells respond to the excess thyroid hormone and thus create her symptoms.

I have noticed that she seems worse after illnesses as well. She recently had strep throat and for a month after things were "off". She recently had night sweats. Have you ever had that? She also complains of itchy skin and back pain. I can't figure out how any of this goes together. She has another follow-up appt this we'll mention all of this then. She also seems to have very little endurance. Did this happen to you? For example...she may be very hyper and excited about going for a bike ride. Seeing her, you'd think that she'll have a ton of energy. In reality...she can only bike/run/etc. for a short distance and then she gets tired and complains of her legs hurting. When she "over-does-it" that seems to set off some of the other symptoms as well and it takes her a while to get back to "normal".

Her doctors aren't proposing any thyroid treatment. They all seem to know that this isn't a problem with her thyroid...her thyroid is simply following directions and making the hormone like it is being told to. That's why they were looking at the pituitary gland. It also appears to be working that is how they diagnosed as RTH. I'm glad her doctors are so knowledgable. They keep saying they'll just have to watch her and see how things go since there isn't a whole lot of research...especially for kids her age.

Do either of your parents have RTH? My husband and I do not. Apparently it is a dominant genetic her kids will have it too (from what I understand). Is that what you were told as well? They were surprised that my husband and I didn't have thyroid issues...but they said it is possible a gene mutated only within her and that created the problem. We have two other children that haven't had any issues yet...but they are supposed to have the genetic test done this summer just to make sure.

Thanks again for your help. If you think of anything else, please feel free to share. I'm sure I'll think of more as well.

Last edited by moderator2; 03-07-2011 at 08:23 AM.

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