Thyroid Concerns...

Since thyroid problems are commonly dealt with in people with Down syndrome, I thought I'd share an article a doctor wrote for our book.

This doctor has dealt with quite a few people with Down Syndrome and thyroid problems. There is a lot more info in our book on the thyroid also :).

Doc Don, Downs, and Hypothyroidism

The Major Handicap

As infants, they begin life with a host of handicaps. Their mothers are usually advanced in age. Indeed, their risk of their illness increases with each passing decade of their mother’s age at conception.

Infancy is difficult as they tend to be less active than healthy newborns, often feed poorly, and growth is usually sluggish. Bowel movements are frequently a problem, and constipation can be so bad that rectal prolapse is not rare.

They lag behind their peers with linear growth being more retarded than their tendency to gain weight. If the diet includes adequate carotene, there might well be a yellow-orange tinge to their thickened, puffy skin. They retain fluids easily, and may have dry and scaly skin.

Mental and physical retardation are the most common outcomes, and parents are frequently frustrated by the difficulty getting health professionals to help. They are prone to frequent illnesses, obesity, hearing problems, and delays in mental, emotional, physical, and sexual development.

The above is pretty much a classic textbook description of Cretinism that is Undiagnosed, Untreated, HYPOTHYROIDISM in childhood. Also, it is very similar to descriptions of Down’s Syndrome (DS). Indeed, these conditions overlap often enough that some investigators feel that Hypothyroidism is not only the cause of many of the problems associated with DS, but that it may indeed be a causative factor in DS. (David Derry, MD, PhD, personal communications)

 If an infant is born without a well functioning thyroid gland, the physician has a matter of weeks to figure out what is wrong and fix it. If the doctor misses this Golden Window, that child is condemned to a lifetime of mental and physical retardation; and even good treatment later in life cannot make up for the missed critical time for maturation. The window lengthens as the child matures, but the severity of the consequences is always much greater for the underdeveloped brain than for the adult.

Golden Carmen

Carmen was a beautiful baby with DS crawling around my office as her mother told me that she had serious worries that Carmen had Hypothyroidism. Ginger had brought Carmen from Connecticut to see me, because she could not get her Pediatrician or the Pediatric Endocrinologist to listen to her concerns. Over the past months, Carmen had suffered from ear infections, eye infections, asthma, a heart murmur, and extreme difficulty functioning normally. Her favorite “play” was to sit in front of the mirror and look at herself. Later, her mother told me that when she revealed to me that Carmen was 20 months old and had not grown an inch since 10 months, she saw my jaw drop. (Her mother, a wonderful person I met on a DS therapeutic nutrition bulletin board, gave me full permission to share this story, “if it had a chance to help just one person.”)

Carmen ate poorly, tended to whine a lot, and didn’t especially like activities with other kids. It seems that the Pediatric Endocrinologist didn’t feel that “lab tests were abnormal” enough to consider treatment of Carmen. If you carefully treat for Hypothyroidism when it doesn’t exist, no harm will be done. If you do not treat when it is present, that child will suffer for the doctor’s stupidity for the rest of their life. (At times, I have trouble not cursing an arrogant physician who would risk the life of a child for some lab slip.)

Long story made short: I initiated treatment for Hypothyroidism, Carmen and Ginger went back to Connecticut, and we chatted on a regular basis. In a short time, Mom wrote to tell me, “Carmen is eating like a little piggy and giggles all the time.” She had real toys and real friends, and the Pediatric Endocrinologist reluctantly “allowed” Carmen to stay on the appropriate treatment.

Over the years, I’d choke back tears when things like this happened. Not for my patient who had the wherewithal to get the needed help, but for the countless people who were victims of uniformed, arrogant, ignorant, or greedy physicians who didn’t recognize and treat what is the basis for the most serious health problems that exist.

It’s Everywhere And Affects Everything…

Because thyroid hormone activity regulates how many calories each cell is allowed to burn into energy, for its own use; that small, butterfly shaped gland weighing less than an ounce sits in your throat and controls virtually every function in your body. Thyroid disease plays a major (if not the major) role in: conception, fetal development, pregnancy and delivery, ongoing growth and maturation, cardiovascular diseases, stroke, brain development and thinking, skin and hair texture and growth, and any other health concern one could imagine. (You might like to read, “Solved: The Riddle of Illness” by Langer, MD.)

Thyroid Disease Is Common…

Some parts of the Country have always had an abundance of thyroid problems. The Great Lakes Basin has long been called the “Goiter Belt.” (A goiter is an enlarged, probably malfunctioning thyroid gland.) Iodine is critical for adequate thyroid function. The use of fluorides in the water, tooth paste, and plastics, and many drugs has seriously contributed to an increase in thyroid disease by preventing iodine utilization. (And, incidentally, there is NO reasonable evidence that adding this dangerous, toxic industrial waste to drinking water helps teeth.)

The chlorine that is put in water to “purify” it, actually displaces iodine in the diet and prevents adequate uptake, as well. (Incidentally, it reacts with impurities in water to form known carcinogen; and it is not banned in Europe where ozone-activated oxygen does the same job, safer and cheaper.)

Iodine was used in bakery goods as a dough conditioner, and a slice of Wonder Bread (for all of its evils) could easily provide a reasonable supply of dietary iodine to prevent a goiter. But, that is not allowed, and instead, bromine which is another iodine antagonist is now used. (“Iodine: Why You Need it, Why You Can’t Live Without It” by David Brownstein, MD does a great job with the role of iodine in health.)

In addition, many of the chemicals used in plastics and foods prevent adequate thyroid function. For all the problems most people have, DS makes successful adaptation to Hypothyroidism even more difficult. Communication difficulties coupled with low expectations from health care professionals often condemns the DS child to one more unnecessary difficulty.


There Is No Money In Treating Not Thyroid Illness…

If a doctor adequately treats thyroid illness, the patient gets markedly better in a relatively brief period of time and uses cheap medicine. There is no thyroid replacement that is still expensive and on patent, and no well patient will want to come in more that every few months. Your doc is not going to get neat gifts from the thyroid replacement (about 30-50 cents a dose) people that Prozac ($2 to $5 a dose) or Lipitor ($5 or more a dose) people pass out. And, adequate thyroid replacement can solve many depressions and many problems with elevated cholesterol so that people don’t need frequent trips back to the doc.

If you do surgery, it is even more lucrative to not treat thyroid problems. If a women comes in with “Periods from Hell,” (Crampy, clotty, heavy menses that go on for 7-10 days and end with passing “things that look like calf’s liver,” as a patient explained to me.) adequate thyroid replacement usually resolves it. End of story, end of financial gain. However, don’t treat; and she will eventually return begging for a hysterectomy. That is about 4 grand for a morning’s work. You do the math. Coronary Artery disease is far more common in hypothyroid people, and bypass surgery or a stint is even more lucrative than a hysterectomy that could have been avoided with a 50 cent a day pill.

In general, almost all medical problems are more common in hypothyroid people. Heart disease, obesity, cancer, stroke, and infectious diseases all occur much more often in the person with low thyroid function.

Not Much Is Expected From DS Kids…

When I used to do Psychiatry, nothing would anger me quite as much as when another physician would ignore my patients’ valid complaints with a shrug and, “(what do you expect) they’re a Psych patient.”

I feel the same way about doctors who ignore valid complaints of weight gain, constipation, increased infections, decreased alertness, and slowed mental and physical maturation with the rationalization that it’s because “they have Down’s.”

This sin is especially frequent when the DS kid has one of the many sorts of hypothyroidism which cannot be diagnosed by labs alone. I have people come from all over the country because they could not find a doctor smart enough to shut up and listen to the very cogent argument that they made for Hypothyroidism, just because the lab could not do the thinking that the other doctors should have.

Thyroid Labs Or The TSH, Full Speed Ahead…

When this chapter was suggested to me, I think that I was supposed to help parents second guess doctors and other lab jockeys with the numbers that the labs crank out. More important than that is to realize a thyroid condition cannot be diagnosed by labs alone, and there are NO labs that can rule out the presence of a thyroid problem. Anytime a doctor is looking for a Diagnosis (That’s fancy for “What’s wrong?”), 85% of the information comes from the History (What has been happening to my patient before they came to the office?); about 10% comes from the Examination (How does this person appear to the, hopefully, well trained eye?); and the Labs, in reality, only contribute about 5% to most diagnoses. This formula is the one we are all taught in Medical School, has been the model of Good Medical Care since Hippocrates, and which no reasonable doctor would deny.  Yet, all this good sense is totally ignored daily by physicians dealing with thyroid problems.

Normal Means You Are Like Other Sick People…

On the average lab slip, you will see a number which is your value, and next to it a Range which the doctor is supposed to look at to tell if your number is “normal.” Something like this is common on lab slips:

Free T3                             2.4                                      2.4-4.4    pg / mL

Free T4                              0.80                                    0.80-1.80 ng /dL

TSH                                   4.0                                       0.4-4.3     mIU / L

In the “Good Old Days,” they would make the doctor look at each number and each range to see if your number was between the little number and the big number. Now they print abnormal values outside the normal column, and to be sure that you don’t screw things up, they will put an “H” or an “L” next to the abnormal value.

Ranges will vary from time to time and from lab to lab. While the above lab work is “Normal,” it is not necessarily healthy. Actually, if this was my lab work, I probably could not walk around the block under my own steam. That “Normal” range represents the middle 95.5 % of the scores of the (sick) people who we send to the lab because we suspect their thyroid is too high or too low. (Technically, “2 Standard Deviations either side of the mean of the scores.”) And if, by some fluke of luck, you are sicker than those other 95.5% of the people, you will lower the average, and it will then become that much harder for the next poor soul who comes along.

“We are People, NOT lab values” Mary Shomon

The next problem is that the lab values do not have anything to do with the state of health of the patient. Those same labs could have come from a living patient or a dead one, and there is no way to tell from the labs. The lab values are merely the lab’s estimate of the amount of various chemicals in the blood. And, those chemicals may, or may not, be related to the health of the patient. There are countless conditions that could allow identical labs and a range of patients from moribund to relatively healthy.

And Those Estimates Are Not Always Good Ones.

To further muddy the waters, labs do not always do a reasonably good job. When the Centers For Disease Control has sent out standardized laboratory specimens to hospital and commercial laboratories, between 8 and 25% of those tests come back with erroneous results, according to an article in The American Medical News (Langer, op cit). 

Turn Around And Look At The Tree!

To pay attention to lab slips, instead of to your patient, is as foolish as looking at the shadow of a tree, instead of looking at the tree. When I was in Medical School, back in the 60’s, if we dared to base treatment solely on a lab slip while ignoring the condition of our patient, we would earn a glare with admonition from staff, “Doctor, around here, we treat patients, not lab slips!” and we would be lucky to pass that rotation. Today, it is done routinely and is called “Standard of Care.” Be advised: your life and the lives of those you love are far more important than any lab slip. If the doctor you hire will not maintain your priority, it is time to look for another doctor. 

Labs are NOT a substitute for brains

Labs cannot diagnose anything! The labs only know what is healthy from what is sick because Clinicians have told the lab those things. Hypothyroidism was treated (more adequately) for more than a hundred years before the Clinical Lab was anything more than a place to ‘taste’ urine to detect diabetes. (Diabetes Mellitus means “passing through sweet” referring to the sweet taste of the urine of uncontrolled diabetics.) Physicians, who now think that they can use the lab instead of acumen, are crippling and killing countless patients. But, that keeps patients ill and is good for the Medical-Pharmaceutical complex.

Don’t Believe Any Doctor Blindly, Not Even Me

I advise all my patients to bring someone with them when they go to the doctor, listen carefully, ask lots of questions, and take notes or record the session. Then, learn as much about their problem as they can. Finally, decide what treatment and which doctor they want to work with. Your health is too important to risk on someone who doesn’t listen, understand, respect, and explain. No one can be as interested in your health as you and your loved ones. You would never take your car to a mechanic who insults your intelligence, makes things worse, charges an arm and a leg, and refuses to hear your real complaints. Give your health as much respect!

If You Think Hypothyroidism Is A Problem

Excellent books include: Hypothyroidism: The Unsuspected Illness by Broda Barnes, MD; Solved the Riddle of Illness by Langer, MD;  Iodine: Why You Need It, Why You Can’t Live Without It by David Brownstein, MD.

Great web sites include:  http://thyroid.about.com Mary Shomon who knows more about thyroid disease than any two Endocrinologists I have met; 

www.wilsonssyndrome.com/ A good look at a different kind of Hypothyroidism that is not found with labs.

www.drrind.com/ Dr. Rind has a good understanding of the interaction of thyroid disease and Adrenal Fatigue, a common illness that few doctors find.

www.dmichaelmd.com a chance to look at some interesting materials and an opportunity to share ideas.

A prayer that you and your loved ones get what is needed to get well.

D. Michael, MD, PC
(AKA Doc Don) © 2008