Case Histories of Hypothyroidism in
Many people with Down Syndrome have had their health, growth, and mental function improve after treatment for hypothyroidism. Here are some of their stories, told by their parents. This is their own experience, not medical advice. These parent testimonies were originally posted on the Einstein-syndrome email discussion list in and around the year 2000.
by Miriam Kauk:
Mary (then age 7) got a complete thyroid work-up in January, 2000. She had normal T3 and T4, normal antibodies, but high TSH (just a bit outside of this lab’s normal range). For almost a year I had had a growing worry that Mary’s thyroid was going out. The problem is that I didn’t have numbers, and doctors depend on numbers. Mary never goes to the doctor, because she is never sick. This thyroid testing was the first we had had since she was a baby. So I didn’t have a history of TSH numbers to compare this one to.
But I had been noticing symptoms. She had stopped growing out of her clothes. A year and a half before I bought her a pair of shoes, and as I usually do, I bought them just a little big because I have too many children to be buying them new shoes every month. Those shoes were still too big! She was wearing the same pants that she wore two winters previous. Her basal body temp has been 96°F consistently, indicating a lowered metabolic rate. Her skin was mottled. Her auditory processing had stalled at a digit span of four for two years, (actually getting to five two years previous and regressing and getting stuck at four) indicating a slowing of brain growth. She was orange, and sufficient thyroid is necessary for conversion of beta-carotene, the orange precursor of Vitamin A. She was becoming increasingly reluctant to do anything the least bit strenuous or difficult, collapsing into a whining pile on the floor when we asked her to do what should be simple things.
When her TSH came back high, I scheduled a consultation with Mary’s doctor. (I love this doctor. She once told me, “I don’t have a child with Down syndrome, but if I did, I would do everything I could do to help my child.”) I wrote up my talking points, and gave her a copy as we met, so she could see my arguments in writing. She was wanting to wait six months to see what happened with the TSH, and I realize that this is standard procedure. But my strong feeling was that this hypothyroid problem had been there a while, based on the symptoms.
I wrote up the list of symptoms of hypothyroid in children and had her notice how similar that list is to classic Down Syndrome. I told her the things we are doing to combat the almost inevitable retardation that everyone expects from a child with Down Syndrome. I told her about the neurodevelopmental program we have Mary on to build dendrite-axon pairs in a systematic, efficient manner. I told her that we were supplementing the precursors to the neurotransmitters (see Cell Biology) because the neurotransmitters are low in Down Syndrome. I told her we are supplementing antioxidants to keep the SOD overexpression from destroying neurons with hydrogen peroxide after we had worked so hard to build neural pathways. Then I said that all that was just spinning wheels if sufficient thyroid hormone wasn’t there for brain growth.
I told her that one of the biggest problems parents of Down Syndrome kids have is this brick wall we keep running into that says, “Down Syndrome is supposed to be that way.” I told her that if Mary was going to be retarded, then I wanted it to be something that was inevitable, and not because of something that I could have treated. And I stressed that Mary was not going to get age seven to do over again. Time was slipping by for her, and her development was slipping.
The bottom line is that I walked out with a 30 day, non-refillable prescription for a very low dose of Synthroid, a T4 supplement. Here is the thing: usually I am a very non-drug, non-medical type of person. So my goal was not to convince the doctor to prescribe Synthroid, but to understand what we needed to do for Mary. Her symptoms and the high TSH told me that something was wrong.
During the past year we have traveled twice to another state to visit Doc Don, a doctor who is aggressive in thyroid treatment. We have tinkered with Mary’s dose of thyroid hormone, increasing it, and also switching to Armour, which contains some T3. Because her blood tests indicated low zinc and selenium levels, we have also tinkered with her supplemental nutrition, very slightly increasing her dose of each. Now, (April, 2001) her skin is no longer orange or mottled. Her daytime body temperature is 98.6°F indicating an improved rate of metabolism. Her auditory digit span has increased from four to six, indicating renewed brain growth. She is growing again. Her energy is back, and we almost never see the whining reluctance to do what we ask. She initiates learning opportunities and physical activity. I shudder to think what Mary’s lot would have been if I had not known to be aggressive with treating her thyroid, writing off her symptoms as “just part of Down Syndrome.”
by Ginger Houston-Ludlam:
In April, when we had her regular bloodwork done, Carmen’s TSH was at 5.5. This is high normal. I spoke to my pediatrician about it, and he said that since her TSH and T4 values were inside the normal ranges, we didn’t need to worry about it. But that just didn’t settle right with me. In my opinion, she wasn’t growing the way I would have expected her to and I knew that low thyroid could cause short stature. An expert in Down Syndrome has said that when evaluating kids, in his opinion it is almost not a matter of if the thyroid will go south, but when. It is a very common problem. This is about the same time that I learned about Dr. Don.
So, I struck up a conversation with him. He sent me a bunch of MEDLINE abstracts regarding people with both Down Syndrome/thyroid and also some information about familial thyroid problems correlated with Down Syndrome. I started one of my infamous research projects, and stumbled across an article that showed a noticeable decline in growth for kids with Down Syndrome when TSH levels were at 5.7. And Carmen’s (at last check) was 5.5. So, when I was making an appointment to see Dr. Don for my own suspected thyroid issue, I also made an appointment for Carmen. That’s when the her current bloodwork was done.
I brought my cutie pie into Dr. Don’s office for him to have a look-see. (She proceeded to crawl all over his office and dismantle whatever she could get her little claws on—the bookshelf, the potted plant, the filing cabinet with all his drug samples…ooh… lots of little boxes and pill bottles that rattle when you shake them….it doesn’t get much better than that, does it? The little varmint!) It was only when I pointed out that she was almost two years old that the doc’s face dropped. Most people guess just from looking at her that she is just over one, mostly due to her size. After he scraped his jaw off the ground, we looked at her lab results and in the four months since her prior bloodwork, her TSH had shot up from 5.5 to 8.6. She was now officially and clinically hypothyroid, so we started her on Levoxyl (Synthroid) immediamento.
We followed her progress very closely, especially at the beginning. When we were first adjusting Carmen’s medicine, she was hyperthyroid for a couple of days, and she was very clingy (very unusual for my independent girl) and basically acted like she had a headache or the flu. We adjusted her dosage.
She started eating like a horse and going through cycles of heavy activity followed by collapse from tiredness. She basically acted like she was going through a big growth spurt.
A couple months later:
The difference in Carmen when I was aggressive about thyroid treatment was remarkable— her growth and muscle tone improved dramatically, and her teeth and hair, both very delayed and sparse, popped out. One and a half months on thyroid medication and 1.5 inches in growth height kind of speaks for itself. I used to joke with my husband about foot binding because her feet were so proportionally small, and that has also normalized. She is still a petite thing, of course, but she is not so out of proportion.
Cody was pretty much on target until the age of one. His babbling was good. He was standing up in the middle of the floor without assistance for a few seconds (however, it took many months of this before walking). He took a little bit of food from our forks, held beef jerky in his hand (I add this food thing cuz Cody is very food sensitive, it’s almost a traumatic event for him to touch it). All in all, we had it pretty good…good health, no surgeries, etc.
And then…we lost him. Progress became almost nonexistent. Things changed. We could no longer give the NuTriVene-D night time formula as he would wake up all night long if we did, very restless sleep (restless legs perhaps?). And constipation hit us hard. He wouldn’t go for days and suppositories were a way of life.
Life goes on…slowly…
At about three years of age, we hear the hypothyroid issue coming to the forefront…much of it through Ginger’s posts. During the next year, I buried myself in thyroid land. I talked about it at length with many people: other moms… doctors… books…others.
One thing I read in some of the various articles made me realize how long we had been dealing with one symptom: turning orange from Vitamin A. Cody did that at about one year of age. That gave me a clue that we might well have been dealing with this since that time. It is still my conviction that giving him soy infant formula pushed him over the edge into hypo-thyroid-land. Until that time he was holding his own—possibly borderline hypo, but not over the edge.
As many of you know, we upped zinc and organic selenium to assist his thyroid. There was a definite change in our boy for the better. His thyroid was getting part of what it needed. I did that for some time. Then after being exhausted and constantly worrying where his thyroid was, he went on Synthroid…after the Armour didn’t work. He is on one-half of the smallest dose available.
Now here’s where some interesting things have happened, all of which I believe is because of our addressing the thyroid issue:
First: Recently, I decided to again try the Night Time formula fully expecting to have a rough night with him. It didn’t happen. He slept all night. Hmm. It’s been the same ever since.
Second: Some of you will remember that I have tried to give B12 to my little guy. I’ve been trying to give it to him for at least eighteen months. Every time I gave it to him— eeoowww —he was a cranky child who would stay up for hours. I knew that B12 messed with melatonin and figured that was it. Even if I gave him the mere dust from a crushed pill (and I’m talking left over dust from the plate it was crushed on) he was a wild child.
Because we are participating in Dr. Jill’s research (which requires our giving B12), I wanted to check Cody’s B12 levels before we started and did so via SpectraCell. Perhaps his reaction was because he already had enough, I didn’t know. His levels came back normal.
However, last week we decided to go ahead and try the B12 again as I’m supposed to be supplementing it for Jill’s study. Again, I expected to have a really miserable time with him. I only gave an eighth of the tablet. He was fine. As of today we are at the full half-pill dose for Jill’s study and he is doing fine.
Third: Cody has been on senna tea for three years for his constipation. Yes, I know..no one is supposed to be on laxatives for that long…but what was I gonna do? My kid doesn’t eat well, doesn’t drink well. So we were stuck doing something we didn’t want to do. When we first started, my kid didn’t have BMs unless we steeped the tea for fifteen minutes. I’ve gradually been able to get it down to nine minutes. Nine is the lowest I’ve been able to go—until recently.
I began to think “well since he finally has the tryptophan (which is in the night time formula) which is a precursor to serotonin, (necessary for bowel function) perhaps, just perhaps, I can lower the steep time and try and wean this kid off of senna.” As of today, we are down to five minutes! That has never happened around here.
So where am I heading with this long tale of mine?
This road reminds of the old song “the thigh bone is connected to the hip bone.” All these steps wouldn’t have happened without a first step—that being getting the thyroid fixed.
My thoughts are that by fixing the thyroid, when Cody now takes the Night Time formula which aids in the release of growth hormone, it now has a place to go. I’m no endocrinologist, but I would assume that if the thyroid is not functioning well, then the growth hormone isn’t taken up and used where it is needed.
Could it also be that by fixing the thyroid, the tryptophan can also now be used properly, producing more (or keeping available) more serotonin so that his bowels function better?
As for the change in the way he can handle the B12, I’m not sure, but something has changed, he can now utilize the stuff.
Danny had an elevated TSH (10.3, normal range = 0.4 – 5.5) but since his T4 was in the normal range, his doc told us that the results were “OK” (at the time, I didn’t know enough to ask for the numbers, just took his word for it). Eight months later, when I started looking into thyroid issues, I asked for the numbers (and almost stroked out when I got them). By that time, Danny had had a slowdown in growth; he didn’t grow at all for four months. We asked for another thyroid test, and by then, his TSH was 23.11 (normal range =0.40-5.0), and free T4 was abnormal, too. He was active, alert, hair was shiny, etc, so we had not suspected hypothyroidism before his growth slowed. Well, he was constipated of course, but all “Down Syndrome kids” are constipated…and he had big time feeding problems, but that “goes with the territory.”
After he was put on thyroid replacement, his growth picked up for a few months and he grew more than four inches in about four months. He went from being merely alert and active to curious—he had to see what was in those cabinets. He moved faster (and he was no slouch before). But the real kicker was that within two weeks, his gagginess was completely gone. He had had that problem for months, and we thought that it was a reaction to having had a nasogastric tube for almost five months. Within two weeks after starting the Levothroid, he went from eating only Allsoy/sweet potatoes to eating things like fruit cocktail and chili—table food style stuff.
Evan’s TSH was 5.7 for two years at a lab where the upper normal was 6.0. He wasn’t growing much and was always cold. Fearful of hypothyroid, I asked for a recheck after months and just got the results yesterday. His TSH is now 2. Sounds like a significant improvement, doesn’t it? And he grew at least an inch this 6 months! The main thing I’ve done differently is adding 1/4 pill of zinc (12 mg). He has of course been on the TNI (NuTriVene-D) protocol since five months old (most of the time). [The Nutrivene formula has been changed since this writing. The zinc component was doubled. -ed]
Evan has not been on thyroid medications yet. At a TSH of 5.7 all the docs here thought that was fine. Their get excited point was 6.0, but I got excited anyway and I started supplementing the zinc gluconate. Evan was not growing much before February. Now he is. Zinc was the thing that changed the TSH—after all it was 5.7 for two years before that. We check every six months.
I might give a caution here that Dr. Leichtman gave precautions that some mothers might not understand how toxic this zinc and selenium can be and that too much is dangerous. In fact he was quite emphatic about it. So I’m only saying what I did. I am afraid too of overtoxing on some of this, but so far so good with Evan.
Jamie started on thyroid supplements at age two, but became hyperthyroid immediately following open heart surgery and removal of heart medicines at age seven. There was alot going on. We just assumed she was agitated and severely aggressive due to pain. She had looser stools, aggression, hyperactivity, feeling warmer, less sleep. We didn’t think to test her thyroid right after the surgery. We did finally, and the free T3 showed up way too high as she was on Cytomel (T3) replacement. She calmed right down after the medicines were lowered.
After that every time she was tested over the next four years her medicines needed to be lowered still more until she was off thyroid supplements completely. And now, a year later, her TSH is back up to 12, meaning that she is hypothyroid again. And so she is back on thyroid supplements. Jamie was diagnosed with thyroid antibodies a couple of years ago. This means we will always have to keep close watch on her status.
Related Pages on This Site
From the “Top Fifteen Things New Parents Should Know” series.
As we work to keep our children with Down Syndrome healthy, it is wonderfully helpful to build on the research and experience of parents who have gone before us. The health of our children is a major topic on the Einstein-Syndrome list. The discussion above is selected posts from the list. This does not constitute medical advice, but only the experience of other parents dealing with Down Syndrome.
Remember that every child is different. What works for one child may not work for another. The ideas presented here are sometimes out of the medical mainstream. Your doctor may not endorse them. We strongly advise that you use our discussion only as contributing data for your own research, consult with appropriate medical professionals and make your own decisions. If, after doing your research, you decide to follow a practice that is out of the medical mainstream, carefully monitor your child’s progress by appropriate medical testing and oversight.