A Guide To Dealing With Congenital Hypothyroidism

An Informative Hub on Living With This Disorder

Do you know anyone diagnosed with hypothyroidism? No? Well, you do now.

I've been hypothyroid all my life. I'm not kidding. I was diagnosed with congenital hypothyroidism at thirteen weeks of age. Most of the literature I've read on children being born hypothyroid says that this condition goes away after a time.

Unfortunately, I was not in those ranks, and I find it disturbing that, despite the ratio of babies born with the sort of hypothyroidism that does not "just go away," (1 in 4000, last I read) more mention is not made.

How to deal with discovering your child is hypothyroid and will remain that way for life

I am not a parent yet, but my parents have told me often that even though they did their best to come at the notion as scientifically as possible, it did not mean they did not experience grief at realizing their child would not be completely like other kids.

So what does it mean, this diagnosis?

30 years ago, when I was born, medical science still did not know much about hypothyroidism. That was in 1978, when testing for such conditions was not mandatory, like it is now. Now, if test results show your child has this issue, be thankful you are not in the 1970s anymore. Why?

For one thing, not catching childhood hypothyroidism in time can cause all sorts of developmental problems, usually starting at about 12 or 13 weeks old. I was diagnosed at this very breaking point, so thankfully, my developmental problems were far fewer than what they could have been had my condition been overlooked out of sheer dismissal or lack of knowledge. The discovery was due, thankfully, to the usual first-time-parental anxiety--and the general intelligence--of my parents.

Okay, so your child's been diagnosed. Next up is hormonal treatment, usually with levothyroxine (aka "Synthroid.). Or, if you are into alternative/complementary therapies, a naturopath, or perhaps a more open-minded allopathic doctor, will usually prescribe Armour, a natural thyroid supplement made from desiccated pig and/or beef thyroid hormone. It is said by those who have taken the latter after having been on Synthroid, that Armour works better for them, though with this supplement, it is said to be a bit tougher to get a pin-point accurate dosage, so more vigilant care is supposedly needed. I have not had the experience of Armour, though I'd like to try it.

Keep in mind that once that kid is on Armour, or Levothyroxine, they're on it for life. Their condition will not go away. The levothyroxine is not a cure all, either, so be sure and keep your child very active. Whether they're into dance class or more sports-related endeavors, it doesn't matter. Hypothyroidism is a metabolic disorder, after all, and therefore activity levels must be kept high to supplement the medication, as well as to offset any potential weight gain if refined sugars or starches are kept around the household.

That is not to say they shouldn't be writers or musicians (both of which are moderately sedentary occupations), but do encourage them to take frequent activity breaks to keep bad sedentary habits at bay. Exercise with them, too, so they don't feel like it's some sort of "punishment," or chore that they have to do all by their lonesome. Doing this with them will also set the example they need to continue good habits into adulthood.

Once your hypothyroid child hits school-age, be sure and reassure him or her constantly that no one can tell they are hypothyroid. I particularly emphasize this because I was so afraid, so sure that the other kids would be able to tell I was different, and that they'd make fun of me, or worse, exclude me because of that difference. Camping situations were also not fun for this reason, and I would avoid taking my medication for the full week because I did not want to appear unlike the others. This, of course, made my parents very upset, as they should have been. It wasn't until I did full-on research into what makes a normal thyroid tick and what can go wrong, that I fully understood why my parents were so worried when I did not take my medication.

So do your best to not only reassure, but educate your child--and yourself--on his or her condition. Now, while you don't want to make light of it, you also don't want to belabor the issue to the point of being overprotective, which is all too easy for parents to do, especially if you only have one child.

When your hypothyroid child reaches puberty, that's another extra-large hurdle to cross because you're likely to get even further into the rebellion issues, especially if your child is anything like me: bold, brash, stubborn, defiant (within reason!), and other dynamic traits that tell you your child will go places and do things if their energy is channelled in positive ways.

And yes, it is likely they're going to rebel where it hurts: not taking their medicine, in order to look or feel "normal." Again, I say, regular, genuine reassurance that no one really sees their condition anyway will go a long way towards letting your teen know that you understand their position, both physically and emotionally.

So, what if your child has some academic issues, and are they related to the thyroid stuff? It depends on how soon your child was diagnosed. If all the proper tests were administered right at birth like they should have been, and medication prescribed faster than you can say "bad handwriting," the chances of your child experiencing academic problems is very slim. If academic issues persist, and your child's been on thyroid hormone since before you took him out of the hospital bassinet, then other tests need to be run.

Living With Congenital Hypothyroidism As Adults

Okay, so maybe you're an adult with congenital hypothyroidism, like myself, who is reading this. Many of the same procedures need to be followed: LOTS of extra activity, refined sweets kept to as much of a bare minimum as possible (ideally speaking), and I highly recommend doing one of two things:

1) Get going on a vegetarian or pescatarian(vegetarian with a bit of fish) diet. The latter is, in my personal experience, a bit more beneficial to the hypothyroid patient, for while you are still eating animal protein (if you're concerned about the ethics of this), it keeps your soy consumption to a minimum, and gives you the iodine you need to supplement the levothyroxine. Soy, however, contains natural phyto-hormones that may interfere with the proper function of your thyroid medication. It is for this reason I do not personally advocate a vegan diet for my fellow hypothyroid patients. If you prefer to go full-on vegetarian for ethical, planetary reasons, and not even eat shrimp or fish (sea vegetables notwithstanding), at least go lacto-ovo , because you will get lecithin from the eggs, which is good for excess fat removal from the body while exercising, and of course, B12 from both the eggs and the milk.

Of course, it goes without saying that going veg or at least semi-veg will boost other aspects of your well-being, like avoiding cancer. And you can never go wrong with eating organically, either.

2) Find a health food store or co-op and join! Plenty of thyroid-friendly foods exist in these wondrous places, and the smells of the herbs and veggies are divine, on top of everything else. ;-)

Important note for women who are congenitally hypothyroid and are considering pregnancy: you do not need to worry about your thyroid medication interfering with the experience of pregnancy, for your medication is simply replacing what wasn't there or in super-low amounts in the first place. But I would say to get extra pre-natal care if you choose pregnancy, because the doctor you see will help you manage the proper weight gain for your thyroid condition and for the baby to grow properly. In essence, the doc is there to help you keep things in balance, however precarious that balance might be for you.

Also, if you are worried you'll pass on your condition to your infant (as I am!), keep in mind that if your partner is healthy, thyroid-wise, there's a fifty-fifty chance of the fetus developing with either a healthy or not-so-healthy thyroid themselves. And if your child is also hypothyroid, you of all people will know how things will go down.

Keep in mind, too, hypothyroid ladies, that because your menstrual cycles are irregular, getting pregnant might require some extra help from fertility treatments or IVF. Neither is illegal or immoral, though with IVF you might end up with more children than you planned, unless you specify how many embryos get planted inside. (I personally want to stay away from the "Jon & Kate Plus 8" thing, though. I do not view that having that many kids is sustainable for the planet--nor for my sanity! O_o)

I hope this Hub has helped you understand what goes on in the lives of people with hypothyroidism, and the parents who brought those people into the world.










Books from Amazon on Dealing With Hypothyroidism

Living Well with Hypothyroidism: What Your Doctor Doesn't Tell You... That You Need to Know (Revised Edition)
Living Well with Hypothyroidism: What Your Doctor Doesn't Tell You... That You Need to Know (Revised Edition)

"Living Well With Hypothyroidism" is probably one of Mary Shomon's best-known works. Being a hypothyroid patient herself, she has a website, and an online newsletter about the disorder, and in "Living Well,' she writes extensively about going through life successfully with hypothyroidism, exploring both conventional and alternative/complementary treatments.

 
The Thyroid Diet: Manage Your Metabolism for Lasting Weight Loss
The Thyroid Diet: Manage Your Metabolism for Lasting Weight Loss

"The Thyroid Diet" is something of a follow-up to "Living Well with Hypothyroidism," as it gives more detailed advice for managing one's weight and metabolism.

 

More by this Author


Comments 25 comments

Robyn Lee 6 years ago

Hello I'm writing in terms of this article i just readf and i 'd like to say thank you. i have a 7 year old daughter with this condition and i was worried about when she gets older and you answered all my questions.I will watch her sugar habits because she loves candy lol as we all do at times. Thank you so much


Hledis 6 years ago

Hello, I'm a 16 year old congenitally hypothyroid girl from Iceland. I don't really know that much about the illness, mainly because my doctor doesn't seem to have much to tell me about it. I want to do research on my own and I was wondering if you could recommend any good books on it and if you had any tips on what to eat and what not to eat.

Thank you.


Kayla 6 years ago

Yo! im a Congenital Hypothyroid 16 year old girl as well

I've been living with the effects myself for awhile lol |D

anyway Very informative article ive been looking on more info on my problem so this helped

time too get cracking on a healthier diet!~

thanks alot for this


Angelina  6 years ago

thank you thank you for this article. My daughter is 3 months old now and she was born with CH. i have been a basket case up until now. I have been getting fed up with all the research stuff online, not telling me exactly what i want to know about ch. i have had so many questions about her as she grows up, and you have answered my questions greatly. thank you!


Tina 6 years ago

I just wanted to post to the comment that people with CH have a 50/50 chance on having a baby with CH. That data is not correct. It is estimated that only 15 to 20% of CH cases are hereditary and the gene is recessive. So the math would be exponential to determine the odds of a person with CH having a baby with CH. My sons CH is one of the 80% types that was environmental so he has the same chance of having a child with CH has any other couple.


natural-thyroid-user 5 years ago

Nice and informative hub. In my experience the majority of doctors/specialist have a very black and white, mechanical view of the thyroid - if you are levels are right you should be feeling fine. Then when I didn't feel fine and I still felt tired, achy, emotional and constantly getting colds, I started to worry about having other activities wrong with me.


Kelly 5 years ago

Thank you for writing this article. I really appreciate reading your experience. You answered some of the questions I have related to my 3 year-old CH daughter. Thank you.


Fellow CHer 5 years ago

I too was born with this almost 34 yrs ago. I wasn't diagnosed and treated until 7 months old however my brain was miraculously spared. Also went through the "I want to be normal" phase so didn't take my meds for an entire summer and honestly didn't notice a difference in how I felt. Started it up because I had a doctor's appt - this was before I understood that the test looks at the past 4-6 wks of compliance. I'm actually trying to get pregnant and 15 months later, still no success. Very disappointed in the lack of research articles on human congenital hypothyroid and fertility. Most cover mouse genetics. Starting to wonder if my delayed onset of treatment or my summer of rebellion cost me my fertility.


Fellow CHer 5 years ago

I too was born with this almost 34 yrs ago. I wasn't diagnosed and treated until 7 months old however my brain was miraculously spared. Also went through the "I want to be normal" phase so didn't take my meds for an entire summer and honestly didn't notice a difference in how I felt. Started it up because I had a doctor's appt - this was before I understood that the test looks at the past 4-6 wks of compliance. I'm actually trying to get pregnant and 15 months later, still no success. Very disappointed in the lack of research articles on human congenital hypothyroid and fertility. Most cover mouse genetics. Starting to wonder if my delayed onset of treatment or my summer of rebellion cost me my fertility.


Heather 5 years ago

I am 30 and was diagnosed at about 10 days old (screening at Travis Air Force Base.) I have been struggling with my weight, fertility (nothing in the last 7 years of trying) and trichotillomania as well (I had depression and bipolar disorder diagnoses as well at different times that have since resolved.) This is the first time I have been able to ever find anyone else my age that has the congenital type and was treated in time.


suzan bulca 5 years ago

Hi there, I just want thank you for your take on the condition. I am 27yrs old and have congenital hypothyroidism. I have been struggling for almost all of my life with it. Even with the right dosage of the cheap synthetic stuff, I am always feeling sluggish, tired, depressed and go around in circles due to the effects of being overweight from the condition. What can I say, I dont know about doctors from you region, but the docs in South Australia are clueless and makes it hard for them to diagnose properly, because of there lack of knowledge about the condition. (That not to be said about the hospital doctors who have helped detect this thing like you mentioned in the late 70's).

It's really nice to know I'm not the only 4000th one in the world. Please email me (anyone) if you would like to exchange thoughts, etc.

suzan_bulca@hotmail.com


michelle 4 years ago

Hi, I am 26 years old this year, and I was born with Congenital Hypothyroidism, and I also suffer from being over weight from the condition and find it very hard to lose it, again the doctors that treat me in the UK don't really know much about my condition and my TSH levels are always to high or to low, which also makes me feel like i'm on a roller coaster ride of emotions, either feeling very tired, sluggish all the time, and also depressed. I do have a 6 year old daughter that thank fully was born healthy and has no signs of developing a problem with her Thyroid, sometimes I do just want to experience what feeling 'normal' is, and sometimes its quite upsetting when you TSH levels are up, down, up, and down. But a big thank you for writing this article because as I mentioned with the doctors not knowing much about my condition, they were unable to emplain things to me about it, and it wasn't until I looked on the internet for answers that I am only just now at 26 starting to understand it alittle.


BardScribe profile image

BardScribe 3 years ago from Iowa Author

Wow--It has been WAY too long since I accessed my own HubPages account--let alone this particular article. I am SO pleased my article helped so many of you, and I am flabbergasted that so many people in the world are dealing with hypothyroidism and the doctors some of you mention are clueless. If I felt it was my path (and could handle the stress of a pre-med degree program), I'd become a doctor myself and publish stuff like crazy. It's unconscionable there is so much suffering from endocrine issues and so many folks in the medical profession know diddly squat!

Tina: Thank you for the statistical information on CH and heredity. There are reproductive and endocrine issues on my mom's side of the family, and I was the rare one to have been born with CH. My choice to have kids has changed since the main article was written, chiefly based on my discovering what I'm meant to do with my life, as well as how much it would cost me to get fertility treatments. I am also looking into how our food sources (GMOs and the like) have influenced people's endocrine systems. Math is not my strongest point so my interest in genetics and ecology will have to remain "armchair avocations." :-)

Lacey: your choice of a gluten-free diet is a good one. I have discovered I stay fuller longer if I eat quinoa-based pasta, but right now, my budget demands as well as parental skepticism (I am forced, right now, to live with my folks) keep me in the regular pasta aisle. I am aiming to change both situations as soon as I possibly can. It is a challenge. :P


Karen Pender profile image

Karen Pender 3 years ago from Livingston, West Lothian

I was also diagnosed at 3 days old of congenital hypothyroidism. I am 32 now and I have struggled for the past few years. Your article really helped me. For all of you worried about having kids. I have 3 healthy kids who have no problems with hypothyroidism. I am currently trying everything to supplement my levothyroxine as I feel they are not working for me as well as they should.


Noelle Tolbert profile image

Noelle Tolbert 3 years ago

I want to invite you all to a Facebook page for parents with kids that have congenital hypothyroidism. And if you are an adult living with the condition, from birth, you are more than welcome. We love to meet people that can give us insight into the teen and adult years. The page is called Congenital Hypothyroidism Support Group. It's a secret group, so you will need to make a request to join. It's good to meet all of you. My dd is 12 and was diagnosed at 13 days old.


Andrew Berney 3 years ago

I have a 10 year old daughter with CH and feel that there is so little we know about CH that together a few of us have started a website that we would love to have your contributions on. The address is chkids.ning.com and everyone with an interest in CH not just parents are welcome to join. Bardscribe thank you for your post it is nice to know that there are people out there like you who care enough to post some great information about CH and how you are dealing with this lifelong issue. Cheers from Adelaide, South Australia. Andrew


michelle 3 years ago

Hi I was born with congenital hypothyroidism and I am 50 years old .I was three months old at the time .and I am a mother how has passed my condition on to my daughter. And because of it I did not take the risk of having any more .my daughter had also a heart condition my thyroid doctor was wrong when he said the medication would effect my unborn child how wrong


Sam 3 years ago

My wife is 24 old now with CH. When she was 2 years old then found the CH and started the medications.

She followed the thyroid replacement hormones as treatment.

Recently we had one abortion and doctors told us that embryo had genetically problems and died.

So we consulted with a popular Endocrinologist and adjusted her doss into 112.5 mcg (After 3 month’s analysis).Abortion time it was 125 mcg.

Now doctor informed us that when we knew my wife is carrying then please increase the doss 25 mcg..That is total 137.5

After abortion we yet to conceive…So hopefully we are waiting for good things to happen…


JenJen 3 years ago

I'm a 35 yrs old woman from Finland with CH and were diagnosed right at birth (was born in Sweden, where testing these conditions was mandatatory already in the 70's) and been on medication since I was 3 weeks old

Though my T-4, TSH- and T-3 levels seem to be normal according to my bloodworks, been having symptoms of hypothyreosis ever since I got in my thirties:, as if the mdication no longer works:anyone else have these same problems?


Karen 3 years ago

I was born with congenital hypothyroidism 33 years ago and was diagnoesed at 3 days. I have had 3 children naturally and they are all healthy. There is hope for all you guys trying to have kids. I was told at 16 I probably wouldn't have any


JGHunter 3 years ago

I am honestly surprised at just how many commenters are or are talking about female sufferers.

I was born without a thyroid gland and no advice from medical sites have been helpful, as they all talk about people who suffer from hypothyroidism as a level of activity but as I have no thyroid I don't know how relevant it is to me. My whole life I have never had a GP who has offered me advice on diet and activity.


daire menzemer 2 years ago

Hey! Im a 19 year old with congenital hypothyroidism. Ive actually never been embarrassed about my thyroid issue. Im actually really thankful to be alive. I've done plenty of projects on the thyroid and have informed many people who don't understand.

When I was 12, I went pescitarian (sp?) And was very skinny. I also stayed away from starch and gluten. I knew I had a hard time digesting things so I just stayed away from them.

I know I'm not like other teens, I'm tired. I drink coffee a lot and still feel down. I get depressed easily, anxiety is at a all time high all the time, and I'm now starting to gain weight. Im 5'5, 135 pounds, and im on levothyroxine. NOW this is my only issue with the way doctors perscribe my medication.

I know the way it affects me, if its too low I cant think straight and sleep all the time. I proceed to tell my doctor, so she draws my blood. If I'm at a 'normal' level according to the test results, they keep my dosage the same... Even after I have told her the way I feel.

Now, the way the tests are done is on a scale. There is a range of numbers of what doctors say is 'normal'. I always get my test results sent to me. There has been times where I was at the bare minimum of normal... And I preferably like it higher then low.

Do your studying, ask your doctor what she thinks a normal free t3 level is. Don't be afraid to disagree with her. Its YOUR body. same with if your child is ch. Get the test results sent to you.

feel free to email me at dmenzemer@ymail.com!

Btw, thanks for the article. I love learning more about this!


LeslieAD 2 years ago

Hi,

I'm also a CH patient, and incidentally also born in 1978. They caught mine in a random study being performed on babies in MA to try to get it included in the infant heel stick. Mine is due to hyperplasia, which means that it's in the wrong place (near my collarbone) and is itty bitty.

Anyway, the reason for my post: hubby and I are trying to get pregnant. I'm sure you've read about the problems that hypothyroidism can cause in pregnant women. I feel like the congenital version of this condition doesn't work the same way the acquired version does. I've defied the books so many times that it scares me a little when a doctor says they've treated my condition only to then get all wide-eyed when I say it was caught at 3 weeks.

Have you, or anyone on this page, ever encountered an endocrinologist who has experience with CH in adult women who are either pregnant or trying to conceive? I'm in the Boston area, which seems like it would be loaded with doctors who can handle it, but sadly, no.

Thanks,

Leslie


Kelley 5 months ago

Hello, I love finding board with comments and questions about Hypothyroidism but even better as CH. The !st thing I look for is who is writing the post, parent or patient. Then age of diagnosis. Once again I'm not finding anyone like me as usual. I'm 51 and born with CH but drum roll please....not diagnosed until 8, yes, 8 years old. Never ever once was I ever offered any education about my disease. Take your pill was the only thing I was ever told. Oh so wish I could tell you all how many times I have been called a freak of nature. Not that I'm proud of it. Oh to all of you be grateful you were all diagnosed young and had education. If anyone wants to know more I will tell you. Hoping I can actually find someone to help me try to make my family who know nothing understand that I'm nt just fat, dumb and lazy.


Jennifer 5 months ago

Hi all. I was born in 1978 with congenital hypothryroidism. I was tested at birth, one of the first groups of infants tested in WA. I started on synthroid medication at age 3 weeks. At age 12, we discovered that my thyroid gland had dissolved and was completely gone. Now at age 37, I am struggling greatly with my weight and depression. I have been gaining nearly a pound a day for the last several days. I was in tears about it this morning. I'm so sluggish and just have no energy. My last thyroid test showed my levels were high and they changed my dosage, I go in next week to get tested. I'm at a loss. I would love to hear from others who are dealing with this as well. We can be supports to each other.

Kelley, you are not fat, dumb and lazy. It's a medical condition and I'm so sorry your family can't see that. I would love to chat with you as well.

boersmachick@gmail.com

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