congenital hypothyroidism

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Forum -> Children's Health

Congenital hypothyroidism

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amother

Thu, Jul 17 2014, 3:15 pm

dd was born with it and shes on medication(synthroid) does anyone know someone with this condition and how are they doing after a few years on medication? I didnt get a chance to ask the doctor if any of her future children witll be born with this. as I will definitely ask next time. I just feel so isolated not being able to tell anyone. bec obviously pp dont know its so successfuly treated with jus t medication. and theres no side effects at all. which is great. I am so greatful for that. its just so hard not to have someone to talk to about it bec of future shiduchim. now dont give me this whole thing about stopping to worry about that. its just the way our community goes. so dont try to change soemthing you cant. I just want to see if theres anyone here that has this problem and if you can just tell me how you feel about it. I just need to connect and calm down now.

PinkFridge

Thu, Jul 17 2014, 3:31 pm

I don't know about congenital hypothyroidism. I will say a few things about hypoT in general:
- It's extremely common.
- It's generally very well controlled.
- People with hypoT have a very normal life.

Something I've said to hypo people may apply to you too. I had a very positive experience with my state's thyroid support group. (Google 'yourstate's name' thyroid support.) The moderator is very knowledgeable about thyroid and about our region's doctors. You may want to see if you can get more immediate input this way.

Many people do well on synthroid alone. Synthroid is the synthetic form of the thyroid hormone T4. Some of it gets converted to another important hormone T3. Sometimes people can't do the conversion and they need T3 supplementing as well. They can take synthetic T3 or natural T3. It's really important to get hard copies of all your daughter's labs to make sure your doctor isn't going by TSH alone but also testing T3 and T4.

I hope this gets the discussion going.

As a P.S. I just googled congenital hypothyroidism. These support groups came up.

The Thyroid Foundation of America
The MAGIC (Major Aspects of Growth) Foundation

ETA: I wanted to reread your post to see if you mentioned something and caught something else. Please talk to a geneticist to reassure yourselves. If you're worried about future children, the only source I went to on google was the first. Quite reputable. It said that if caught early quality of life will be normal. There are early screening tests so that shouldn't be a problem.
I don't think the secrecy is helpful for you. If you find out that there is a strong heredity thing, of course she'll have to bring it up for shidduchim. But this is the kind of thing that won't have to be brought up before starting, more like a few dates/meetings in. Some people might even say that hypoT is so common that it might not even need to be brought up but I'm into being upfront, so that if it comes up later the other side shouldn't worry about other secrets.
Hatzlacha!

Last edited by PinkFridge on Thu, Jul 17 2014, 3:44 pm; edited 1 time in total

amother

Thu, Jul 17 2014, 3:40 pm

My brother was born with hypothyroidism. He's also on synthroid. It barely affects his life at all, other than the fact that he has to take medication and occasionally go to the doctor to make sure he's on the right dose. He's married with children and thriving.

If your daughter had to have something, this is a much better problem to have than almost anything else. It's easily treated and won't affect her in daily life. You just have to be careful to monitor her dosage when her weight fluctuates and especially during puberty.

Amother to protect my brother's privacy.

amother

Thu, Jul 17 2014, 4:10 pm

[quote="amother"]My brother was born with hypothyroidism. He's also on synthroid. It barely affects his life at all, other than the fact that he has to take medication and occasionally go to the doctor to make sure he's on the right dose. He's married with children and thriving.

If your daughter had to have something, this is a much better problem to have than almost anything else. It's easily treated and won't affect her in daily life. You just have to be careful to monitor her dosage when her weight fluctuates and especially during puberty.

Amother to protect my brother's privacy.[/quote]

thank you so much I really really appreciate your response it almost made me cry. I see how emotional I am about it now. this was so good and reasuring. its not genetic in my family so this was a random thing. can I ask you how your parents dealt with it in shiduchim? I know this is personal I just would love some ideas. I know its early but hey, its never too early to ask around. especially since I cant speak to people openly about it. what did your parents tell him when he asked why hes taking meds? what about camp? by girls its even more important to be descreet bec they make up stories you know. I just want her to be natural about it in the future how do I go about it? obviously dh and I dont want her going around talking about it.

amother

Thu, Jul 17 2014, 4:28 pm

I'm the amother with the brother with hypothyroidism.

I think we grew up in a different world than you live in. My parents didn't worry about shidduchim as much as you seem to be. They didn't go out of their way to broadcast his condition, but it wasn't a deep, dark secret either. His friends knew about it. My family is just very matter-of-fact about it, almost casual. If you treat it as no big deal then so will everyone else. And my parents taught my brother about it at a young age so he would understand what was going on with his own body.

Thu, Jul 17 2014, 5:09 pm

I was born with congenital hypothyroidism. It barely affects my life. I am on synthroid and take a blood test every few months to keep on top of it. I have 2 beautiful and healthy children. If you have any questions you can pm me.

amother

Thu, Jul 17 2014, 5:10 pm

Hi my child was born with it as well, gave synthroid as well but he was on a low dose, we did blood work once a month till we figured out the right dosage amount.... Bh heS out grown it now , we stopped giving medicine at around 3 years old. I didnt tell anyone besides my mom about it because if people don't know what it is it sounds terrible, but on medicine they are perfect!

amother

Thu, Jul 17 2014, 7:01 pm

[quote="amother"]Hi my child was born with it as well, gave synthroid as well but he was on a low dose, we did blood work once a month till we figured out the right dosage amount.... Bh heS out grown it now , we stopped giving medicine at around 3 years old. I didnt tell anyone besides my mom about it because if people don't know what it is it sounds terrible, but on medicine they are perfect![/quote]
actually I spoke to the doc today and he said that there are some that outgrow but not the one dd has. she has nonfunctional. and her numbers were close to 300 when she was in the hospital so no she wont be outgrowing it. although I would love for that to happen.

amother

Thu, Jul 17 2014, 7:04 pm

[quote="dv"]I was born with congenital hypothyroidism. It barely affects my life. I am on synthroid and take a blood test every few months to keep on top of it. I have 2 beautiful and healthy children. If you have any questions you can pm me.[/quote]
is it a possibility for it to be genetic? I see your kids dont have it. it gives me encouragement

amother

Thu, Jul 17 2014, 7:08 pm

amother at 6:01 thanks but I dont like pming or receiving pm

chanasmom

Fri, Jul 18 2014, 4:44 pm

A mother.
I have Graves' disease, which is an autoimmune disease which attacks the thyroid and causes hyperthyroidism. The two most popular treatments for this destroy the thyroid which then causes the thyroid to go hypo, which causes the necessity of taking synthroid ones entire life. Although I have not elected to do this, I know many people who have, from my support group.
key points which you might consider.
1. I understand that you don't want your daughter ostracized, however, keeping something such a deep dark secret, something so treatable, can't end well. It's no different than wearing eyeglasses, getting speech therapy, or wearing a cast. And you're missing an opportunity to educate people about this extremely widespread issue-did you know that Synthoid is one of the top prescribed medications in the US? Why pressure yourself and your family making this into such an issue?
2. As far as the treatment itself. The thyroid regulates many things-heart rate, mood, metabolism, just to name a few. There are many idiot doctors out there, even the so called "top" ones. Make sure you're comfortable with the treatment your daughter is getting. There is a wide range of normal, and your daughter may have an exact number that she will need to be at to feel good. Don't let the doc say, your levels are fine, your weight gain/ mood swings/sluggishness is not thyroid related. Because many endocrinologists are dealing with other endocrine issues, and are not all that knowledgable about the thyroid at all. I can tell you, one person mentioned taking an additional med if the synthroid isn't working...it's not always simple to get the doc to agree to it, from what I understand.
Best of luck to you"

Fri, Jul 18 2014, 5:58 pm

is it a possibility for it to be genetic? I see your kids dont have it. it gives me encouragement

The way it was explained to my mother and then to me is that it is not genetic it is usually a fluke. No one in my family has it. My parents found out when I was born. They got abnormal bloods back for thyroid function and then they did US and it was not there. I was started on synthroid at 10 days old

amother

Fri, Jul 18 2014, 6:29 pm

Hi. My daughter was diagnosed with Hashimoto's Thyroiditis when she was 6. This is an autoimmune disease that affects her Thyroid function. She has been on Synthroid since the start of 2nd grade, she is now 13, going into 8th. As far as I can tell, there has been no affect on her life at all. She is growing nicely, and started her period within a normal time frame. She manages her medication independently at this point, I never even have to remind her. The immediate family knows, and maybe she has told friends...I never told her not to. She has gone to camp since she was 10, and gets the synthroid every morning from the camp nurse, alongside many other girls in the camp, who get meds for all sorts of things, from allergies to ADD. Nobody asks and it's not a big deal for her. Many women end up taking synthroid when they get older...it's very common...both my husband and I take it as well now. We are MO and don't really worry about shiduchim for her at the moment. Her MD said we will discuss pregnancy as it relates to thyroid function when it becomes relevant for her, which is fine with us.

PinkFridge

Sun, Jul 20 2014, 9:42 am

amother wrote:

Hi. We are MO and don't really worry about shiduchim for her at the moment. Her MD said we will discuss pregnancy as it relates to thyroid function when it becomes relevant for her, which is fine with us.

The concern with hypo and pregnancy is that the patient should be getting adequate thyroid hormone. Unfortunately some doctors go by TSH alone or don't factor in the need for T3. It's generally very easily manageable.

And Chanasmom, there are 2 of us!

chocolate moose

Sun, Jul 20 2014, 1:15 pm

Having an underactive or overactive thyroid is not inherited; the tendency to have thyroid problems IS inherited.

amother

Sun, Jul 20 2014, 6:12 pm

My niece has congenital hypothyroidism. She is the only one in her large immediate and extended family to have it, so I don't think it's genetic in her case, if at all. Her case is well managed, but her dosage needed to be adjusted a few times over the years, sometimes because of growth and sometimes for unexplained reasons. Her doctors also said originally that she had 0 function, but later they decided that she might have some function, though not enough to really matter. Please let me know f you would like me to put you in touch with my sister.

I would strongly caution you against trying to keep this a secret for so many reasons.
1. If you try to keep it a secret and it comes out that she's on pills, especially when she's older, then people would be way more suspicious of the entire story than if you talk about it straight up. What's going to happen if she ever has a sleepover or goes to overnight camp? Keeping things a secret there is a lot harder than at home.
2. This is a follow up to point 1- If she takes her medication regularly, she will live an perfectly normal life. If she has this enormous secret, she might not. Research has shown that people who have secrets in their life, even the most innocent, become secretive all around, as a coping mechanism for not "blurting out" their secret. No shidduch in the world is worth the risk of stifling her character like that.
3. This is more serious- what's if you need to leave her in someone else's care and especially if it's an emergency? The single most important factor in caring for hypothyroidism is taking your meds every day, especially during the early years.

Whatever you decide about telling other people, please DON'T lie to your daughter about the reason she needs her meds. For all the reasons posted above, but also because as she gets older, she will need to be aware of her body in order to direct her medication dosage. She can't do that properly if she doesn't know what her medication is for.

And even though you said you don't want to hear that shidduchim are far away, I will say it anyway. Not because it's too early to be thinking about her shidduch, but because the world is changing. Even in the chassidish world, people ARE coming to terms with medical conditions and other supposedly "imperfect" situations. People are also becoming more knowledgable overall.

Your daughters condition might be a complete turnoff to someone today but as people become more medically aware, these conditions WILL become more accepted. I don't know precisely which circles you're from, but I can tell you with 100% certainty that people around me are more open minded than they were 18-20 years ago.

And if I'm wrong, then perhaps this condition of hers will let her meet a wonderful boy with a similarly benign medical condition. And in the meantime, you will have the support you need and you will have taken a positive step for the entire community!

Anon in case you do talk to my sister.

mom44

Sun, May 07 2017, 1:59 am

I was born without a thyroid, and I am on synthroid since birth (37 years till 120) b"h I have 4 healthy kids with healthy thyroid gland. My advice is of she is on synthroid keep your kid on same brand. Don't change because I know for a fact that levothroxine does not work as well as synthroid

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