Congenital Hypothyroidism
1 in 3000 babies have it. Go figure, my Layla has it :(
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@altimuse how did the ultrasound go?? Is the thyroid in the right place?
Yes they are we actually are going to do that on Monday so the specialists can read before our appointment. We started medication last night and I feel sooo bad. My little guy takes Zantac in the morning and does just fine but we had force him to take this stuff, I'll be so happy when he can chew it. Are you mixing the tablet with water?
@altimuse oh I'm so sorry to hear that!! But yes. At least it was caught early. Are they gonna do an ultrasound on the thyroid?
We start her medication today. Yea, I don't like the idea of putting my 3 month old on medication, but if that's what we gotta do, that's what we gotta do.
@may We officially got the same diagnosis today, they diagnosed him unofficially at 1 month we go to meet with the specialist after 2 weeks of treatment. We were blind side because they were high at birth but "normal" at 1 week well they retested at 1 month to make sure and it came back "normal" tested again at 7 weeks for the last time and even though they hadn't changed they were considered high for his age. We tested at 9 and then today 11 weeks and they are still high. Have they started her on the medication yet? My doctor gave us a good prognosis especially sense it was caught so young. I just feel bad we have to do all these doctors visits now.
@hazel her blood work they did after she was born, showed ridiculously high levels, so they wanted her retested a week later. They number went down dramatically but it was still 3x over what it should have been. So she had to get her blood drawn a third time a month later, and it was one point away from normal. But the other number went down to almost below normal. Ugh.
Awwwe poor Layla
So sorry you have to go through this mama. Praying it's only temporary and nothing serious. Luckily they caught it now tough. May I ask what made them check her to notice she has it. Poor baby medication and has to be poked to get blood taken. Prayers to you and the family that Layla won't have it long term and it goes away
Thinking of you ???? hugs xx
I'm sorry to hear this love. But I am glad you caught it now. I hope it's temporary and little Layla can thrive and grow in spite of it. It seems very promising that she is growing and developing like she should. I know you don't want to medicate her but if this helps her in the long run then it'll be so so so worth it.
@Shari I have no idea what this means for the future. If it's temporary we won't know until shes almost 3. But she will be on medicine until then, if not longer.
Thanks everyone! Hope it's temporary too!! She has zero symptoms. Gaining weight like she should be, nothing out of the norm. She got bloodwork done today. Last month when she had it done, her TSH went down from abnormaly high to almost normal, but the T4 went down from normal to almost below normal. Cant wait to get her results back from today!
She's had 3 blood tests done to check her thyroid levels since shes been born, and while her one number is stabilizing, (theres 2 very important numbers to pay attention to) the other number is dropping. And that second number thats dropping shouldn't be. It could lead to developmental problems if it goes lower and doesn't get corrected, because that second number, is associated with the pituitary gland in the brain. So we met with an Endocrinologist today and ruled out 3 out of the 5 main causes. It could either be caused by genetics, (which is permanent) or it could have been passed to her from my placenta, (which is temporary) She is put on medication and will need monthly blood checks. Poor baby. I don't want my 12 week old baby taking medication!!
Our oldest, Hunter, has it. I'm so sorry to hear that for your baby but it is manageable and we've seen specialist after specialist. We've learnt a lot, he's 21 months, about managing foods to help as well as how times affect the medication. We've had growth issues when his TSH has dropped. We've been through the ringer with him - constipation, I mean everything!
He's currently on 75mcg which is a ton compared to his weight. I'm on 375mcg which the dr said is equivalent to a person over 600lbs (I'm 150lb). It's tough but manageable. Little miss priss has shown signs as well so testing had been done on her - still awaiting results. Please feel free to message me and I can try to help you or answer any questions you may have. We are two years into this.. whew!