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Old 12-08-2004, 10:18 AM   #1
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Looking for other parents of hypo children

Does anyone else have a child/ren who have been diagnosed with hypothyroidism (not congenital)? My daughter is four years old and recently diagnosed. Seems to be doing well on her medication, but I would like to hear from anyone else who is dealing with the same things we are.

Old 12-09-2004, 05:48 AM   #2
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Re: Looking for other parents of hypo children

Sorry to hear about your daughter, I can't imagine being so young and having to deal with this stuff.
So far my children do not have it, hopefully they never will. I did have a cousin with thyroid problems as a child.
I know there have been other posters with children who have had thyroid problems, I'll bump your post up since its soon to end up on page 2.

Take care, glad to hear she is doing well on the meds.

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Old 12-09-2004, 06:38 AM   #3
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Re: Looking for other parents of hypo children

HI Retro- Sorry to hear about your daughter. I also have a daughter that is hypothyroid. She just turned 9 and started medication about 3 weeks ago; I do believe that she has been hypo for a while now and has needed meds for a long time. We had a lot of trouble getting her diagnosed. Everytime her levels were checked we were told that they were fine or borderline and that they would keep an eye on them. I was convinced that there was a problem and finally starting learning as much as I could about the thyroid and quickly found out that her levels had never been normal! The first time her TSH was checked it was 3.89 but the doc we were going to still goes by the old lab standards and thought that that level was fine! Anyway I hope you have not had as much trouble as we have about getting your daughter diagnosed and treated. It is very sad that they have to go through this as such a young age; but I tell myself that I am thankful that it isn't something worse. THe best advice I can give you is to learn as much as you can about the thyroid and treatments so you can make sure that your daughter is getting the proper treatment. It really takes a strong and determined Mom to help our daughters to deal with this problem! I wish you and your daughter the best of luck! What was your daughter's levels and side effects? Post them and maybe we can continue to help each other!

Old 12-09-2004, 12:14 PM   #4
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Re: Looking for other parents of hypo children

I am glad you kept pushing the doctors to get her help. We had problems with our doctor, but not in the same way. My daughter has been 36" tall since she was 2 1/2 years old. I do daycare, so I could really see the difference as all my daycare kids got bigger, and my daughter didn't. I knew something was wrong, but everyone kept telling me that she was just going to be petite. I had asked my pediatrician about why her hands and feet were always cold, and he said some kids are just like that. Finally, at a checkup for preschool, I told my doctor that she had not grown in two years and I wanted some tests run. He looked at her growth chart, and finally said that it was not normal, and gave me a referral to a pediatric endocrinologist. He told me there was no hurry, that she was obviously healthy and in no distress. Turns out that a lot of her personality can be attributed to feeling horrible all the time. She had always been very moody and not very sociable. When we had her levels tested they were:
T4 of 1.8
free T4 of 0.58
TSH of 559 (that's not a typo, she was over 100 times the normal level)
She is on medication now, and is doing much better, but we are trying to find the right dose of synthroid. We just switched her dose from 37.5 to 25mcg. It is hard because she has a hard time telling me if she doesn't feel right, because she has never really felt normal to begin with. I have been trying to find info online, but there is not much about kids that are hypo except for the congenital form.

Old 12-09-2004, 05:30 PM   #5
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Re: Looking for other parents of hypo children

Wow I don't think I have ever seen a TSH quite that high before. How long has she been on medication? Have you had any more blood work since she started the meds? My daughter has always been real moody also. Sometimes its hard to remenber that the mood swings are not completly her fault. Her height has not been effected by her thyroid problem (yet). The main symptom that made me believe that there was a problem was her weight. No matter how little she eats she continues to gain. My husband and I both have a small build and have never had a struggle with weight-it was hard to believe that our daughter would. At first she was just a little chubby and everyone said that it was something she would "outgrow". I beleived that untill she was about 7 and then I realized that the problem was getting worse and the weight was starting to bother her. Her other symptoms come and go but she does have dry skin, complains of headaches often, mild hair loss, and muscle aches. Something that puzzles me though is that she doesn't have a low body temperature-she actually sweats easily.?? Does your daughter have trouble with weight? I wish you the best of luck finding the right treatment for your daughter. At such a young age it is really important to get the thyroid under control so that it doesn't have long term effects on their development. Please keep us updated on her progress-it's nice to talk to others with similar problems.

Old 12-14-2004, 01:22 PM   #6
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Re: Looking for other parents of hypo children

My daughter has been on medication for a little over 2 months now, we just had her levels checked and they were a little high so we have cut her dose to see how that works. How long has your daughter been on medication? I wonder if that has something to do with her sweating easily. Since my daughter started taking her meds she has complained at night and at naptime that she gets all sweaty. Something which certainly never happened before. She always slept with fleece jammies and piles of blankets and loved it. We never had any issues with her weight, when she stopped growing any taller, her weight just kind of stalled. She just looks like she is about 3 years old even though she will be 5 in a week. When we took her in she had a lot of symptoms that never ocurred to me that they meant anything. Cold hands and feet, cold intolerance, extremely dry skin, thin hair, very slight breast development(which I had never noticed, I just thought that was how her body was), puffy face, pale, delayed reflexes. Some have resolved since she started meds, some are still there. The good news is in the first 6 weeks she was on medication she grew a 1/2". Have you had a hard time keeping your daughters levels where they should be? I would imagine it is pretty hard to pinpoint the right dose when the patient is a child that is constantly growing and changing. It is great to hear from other parents going through the same thing, thanks for all your feedback!

Old 12-15-2004, 04:52 AM   #7
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Re: Looking for other parents of hypo children

Anyones child suffer 'seizure' type episodes before been diagnosed? Good luck all x

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