RyannJordanStandingAs thyroid patients have become more knowledgeable over the past few years, some have made the startling self-revelation that many of the signs and symptoms of hypothyroid and/or low cortisol were happening in their childhood…but no one caught it. Here are stories by real individuals, looking back. They tell their stories with the hope that if you are a parent, family member, or friend of children, you might spot those signs so they won’t have to say “no one caught it”.

TRACY’S STORY: From childhood pictures, it is clear to see that I had an enlarged thyroid gland. Even in pictures as young as 2-3 years old, it is very visible. Additionally, I always had a weight problem as an elementary aged child. At one point the doctor put me on a “diet”, even though my family ate very healthy meals. We never had snacks like chips or soda in our house, and I ate less than the average girl my age. Since we lived in the country, we also got plenty of exercise outside. My mother grew her own food in the garden so we had plenty of healthy fruits and vegetables constantly. There was no reason for me to be overweight. As a teenager I was able to shed the extra pounds and be very active in sports and typical high school activities.

It wasn’t until my senior year of high school that a doctor finally noticed my enlarged thyroid. At that time they gave me a low-dose RAI scan and discovered that I had an enlarged thyroid. It is ridiculous that I was put through this test and no action was taken to help me. I still was not given any medication or treated for my condition. The doctors told me that my thyroid was just growing larger to produce more thyroid hormones and that I was fine. Just a year later, as a freshman in college, the university clinic did blood tests because they suspected I had mono. My symptoms were extreme fatigue, weight gain, frequent sickness and several bouts of strep throat. The tests came back as elevated TSH and the absence of mono. The university finally found my problem after many years of being undiagnosed. To this day I wonder why no doctor ever asked my parents about a family history of thyroid disease (I have it on both sides of the family), noticed my obviously enlarged thyroid, or treated me after my initial scan revealed a goiter.

CAROL’ S STORY: Constipated from birth up until about 22 years ago when IBS kicked in. Since then I’ve been to you-know-where-and-back with my intestines. Irritable bladder started at the age of 2 with the need to go to the bathroom at night (as well as frequently during the day). Sick ALL the time growing up. Colds, flues, sore throats, fevers, low grade infections. I used to get what doctors called the stomach flu coming out both ends at the same time 24/7 for 3 weeks. Never missed less than a month of school every year with that alone. I was the penicillin queen of the 50’s and 60’s. Motion sickness, below normal temp, tinitus (ringing in the ears and probably some other things as well. RLS (restless leg syndrome) started in 6th grade followed by muscle problems but I didn’t realize it then.

As a teenager I was lethargic, sleeping 10 hours a night and 2 hours every afternoon. My mother was CONVINCED I was anemic and would take me to the clinic telling them “This girl’s anemic. FIX HER!” They would prick my finger and tell her “There is nothing wrong with her. Quit wasting our time and yours!” NEVER once did they offer any suggestions as to what was wrong with me. She did this no less than 3 times. I left home at 19 and continued to get worse. 6-7 years ago I had the ACTH stim test which showed a DEFINITE problem. Base reading was at the bottom of the range. 1/2 hour reading I only came up 1.5 points. You are supposed to double or come up 7 points. I also had delayed reflexes. I now realize I had the classic symptoms of both low thyroid/adrenal during childhood. Even had a top doc tell me (after reading my 7 page health history) that I was CLASSIC low thyroid/adrenal. Treatment hasn’t worked for me but I recently started iodine (in addition to treating candida) which I hadn’t looked into before. I now understand that maybe I needed iodine and that is why the Armour didn’t work. Time will tell that’s for sure.

OLIF’s STORY: As a child, I wasn’t very active, preferring to read instead of active play. The underneath of my eyes were often dark. By age 13, I realized that I couldn’t run long distances in track, like many of the other kids. After only 1/4 mile, I would feel like I was going to pass out. I just had no endurance.

Since high school, nurses would always double take my blood pressure and then ask me if it is always low, which it was (around 98/58). If I ever inquired with a doctor, he would tell me that low blood pressure isn’t a concern, unless I am passing out, which I wasn’t. No one ever mentioned weak adrenals to me.

When I was 14, my menstrual cramps got extremely painful, and my first couple days were always heavy. Since my periods were regular, neither my mom nor I mentioned it to a doctor. Now I know that this was due to low thyroid function.

CATHY C’s STORY: I was born to a woman who was single and pregnant in 1953. If that wasn’t enough stress, she was abandoned by the father of her baby after finding out she was one of a string of girlfriends. She relinquished me to adoption because she felt she had no other option as a single woman. I just found out that though I was a 6 lb. 3.5 oz baby, I was fed boiled milk with dark corn syrup in it, standard formula for the 1950’s, for the first three months in a foster home. I was a big, bouncing, chunky baby, puffy looking, who grew into a very chunky toddler who didn’t sleep well during naps or at night.

I was always overweight on the same diet as my family, who didn’t gain weight on it. I had digestive problems, fatigue, weight gain, puffiness (which I think must have been water weight), sugar/carb cravings, terrible, horrendous constipation (for which I was given lots of laxatives), and depression. I was suicidal in high school and my 20’s. I had lots of symptoms; major allergies and reactions to things, like nylon, which made my feet crack and bleed. I was too tired to play most of the time so spent my time in my room reading. Didn’t sleep well at night, so read under the covers with a flashlight or daydreamed until I could finally fall asleep, which meant I was also always sleepy. Did ANYONE put two and two together and at least do some basic testing? NO! Not until I was 53.

KAREN’S STORY: Signs when I was younger of being hypothyroid that went undiagnosed were occurring when I was in junior high. No matter what sport I tried to participate in, I would always overheat and end up with a beet red face. No other kids in the entire school ever had this problem. I remember one comment a male teacher made which embarrassed me: “Wow, you get red”. Like I didn’t know that, but back then who knew that was a deeper symptom? I also believe thick thighs and knees were a symptom of my early hypothyroid. Kinda strange, I know, but no one else I knew had legs like I did! lol

DS’ STORY: When I think back, I had so many signs of thyroid and adrenal issues when I was little. My temperature was never normal, and always below. I seemed to constantly have respiratory problems, was listless, hated physical activity, wouldn’t ride on the carnival rides because I got very motion sick, and was withdrawn. When I was 13, I started having major panic attacks and went through all the testing…and of course, never found anything wrong. I also had depression, a need to withdraw, fatigue, allergies, red rash across nose, low blood pressure. It seems I was constantly at the doctors office and of course I was “just fine”.

I just turned 60 years old and I regret losing most of my life and the opportunities I could have had for an active, vibrant, meaningful life when all this probably could have been avoided with some simple, accurate testing and treatment. I have changed my thinking about myself. I am no longer a psychiatric patient that is having symptoms because I have emotional problems; I am a person with PHYSICAL, diagnosable problems that CAUSE the emotional problems. I wish we could hand out fliers in school with all the symptoms of thyroid and adrenal problems and say, “Does your child have these symptoms?” Here’s what tests you need. Wonder how many kids are diagnosed with ADD but never had their thyroid checked. What a waste of life.

MARTI’S STORY: When I was young (grade school through high school), I remember feeling faint in the morning if I didn’t eat breakfast within a half hour of getting up… and sometimes would have to sit with my head between my knees for a while to avoiding actually fainting. My blood pressure was always low and I would have to run in place for a few minutes if a med tech needed to take blood out of my arm. I was very skinny. Weighed 88 pounds when I graduated high school. Married at 90 pounds after college.

Want to order your own labwork for your children?? STTM has created the right ones just for you to discuss with the doctor. Go here: https://sttm.mymedlab.com/ 

Want to discuss issues with other parents?? Check out patient groups on the Talk to Others page–you’ll see two groups for parents of hypothyroid children, one on Yahoo and the other on Facebook.