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Mother Hypothyroid (Hashimoto's), 3 children with congenital hypothyroid
Dr. Lupo,
I have been doing some research and wonder what you think about this. I was diagnosed with hypothyroid about 2 months after having my first child was born. She was found to be hypothyroid on the newborn screening, Thyroid scan for her showed normal thyroid. She was put on synthroid. She only takes 72.5 mcg and is now 13 years old. I have 4 other children. Twins that were found with high TSH, but retested and it was fine. My last 2 children also were high TSH and did not go normal and were placed on Synthroid. At age 3 my first child was taken off meds and her Levels went up so they put her back on it. Tried that with my son and he also had high TSH from it and put back on meds. The last 2 kids only take 25 mcg and 37.5 mcg. From research I am finding this is rare. My docs do not tell me anything about this being rare. I was asked if my husband and I were related but that was all that has been said. We are not. Should I look into this more and have genetic tests done on them. I was never tested for Hasimoto but they just assumed. Just wondering when they go to get married, should they be worried about a gene mutation. THanks, Stacey
I have been doing some research and wonder what you think about this. I was diagnosed with hypothyroid about 2 months after having my first child was born. She was found to be hypothyroid on the newborn screening, Thyroid scan for her showed normal thyroid. She was put on synthroid. She only takes 72.5 mcg and is now 13 years old. I have 4 other children. Twins that were found with high TSH, but retested and it was fine. My last 2 children also were high TSH and did not go normal and were placed on Synthroid. At age 3 my first child was taken off meds and her Levels went up so they put her back on it. Tried that with my son and he also had high TSH from it and put back on meds. The last 2 kids only take 25 mcg and 37.5 mcg. From research I am finding this is rare. My docs do not tell me anything about this being rare. I was asked if my husband and I were related but that was all that has been said. We are not. Should I look into this more and have genetic tests done on them. I was never tested for Hasimoto but they just assumed. Just wondering when they go to get married, should they be worried about a gene mutation. THanks, Stacey
Barb,
My kids are tested every 6 months for free T4 and TSH. I have never asked for the labs as I trusted the doctors, but since I have recently gone through some health issues I realize how much incompetence is out there.I also assume that they base the change in dose on both results, but not sure. My oldest (13) has only had 3 med increases, my son (7) no change since birth and my youngest (5) only one increase. I am also told by others, that that is not the norm. I know that the antibodies can pass onto the child but this usually is transient and when they took 2 of them off the synthroid, they were unable to regulate so they went back on the meds. From what I have researched, the only real familial form is dyshormonogenesis. Not alot of info for more than 2 siblings with this disease. A doctor that I corresponded with that was helping me with some of my own issues, told me that it is so rare that it never happens so I had better get a new doctor for them. I am so confused.
My kids are tested every 6 months for free T4 and TSH. I have never asked for the labs as I trusted the doctors, but since I have recently gone through some health issues I realize how much incompetence is out there.I also assume that they base the change in dose on both results, but not sure. My oldest (13) has only had 3 med increases, my son (7) no change since birth and my youngest (5) only one increase. I am also told by others, that that is not the norm. I know that the antibodies can pass onto the child but this usually is transient and when they took 2 of them off the synthroid, they were unable to regulate so they went back on the meds. From what I have researched, the only real familial form is dyshormonogenesis. Not alot of info for more than 2 siblings with this disease. A doctor that I corresponded with that was helping me with some of my own issues, told me that it is so rare that it never happens so I had better get a new doctor for them. I am so confused.
COMMUNITY LEADER
I'm assuming that you tried to post in the expert forum? If so, please note, that forum only accepts so many posts/day and if it's full, the "overflow" gets dumped into this forum, which is patients helping patients.
I would like to ask one question, though........ are your children only being tested for TSH, or are they being tested for the actual thyroid hormones, as well? And is TSH the only basis for their medication dosing? Oops, that's more than one question!!
Hashimoto's is an autoimmune disease; autoimmune diseases are often passed from one generation to the next, and having one autoimmune increases the changes of having/developing another. .
I would like to ask one question, though........ are your children only being tested for TSH, or are they being tested for the actual thyroid hormones, as well? And is TSH the only basis for their medication dosing? Oops, that's more than one question!!
Hashimoto's is an autoimmune disease; autoimmune diseases are often passed from one generation to the next, and having one autoimmune increases the changes of having/developing another. .
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