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" 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.