Congenital Hypothyroidism – Inadequate Thyroid Hormone Replacement

Physical and psychological symptoms of inadequate thyroid hormone replacement during childhood and adolescence

In my last post, I took y’all on an in-depth journey through the horrific accident in 1984 that claimed the lives of my parents and put me in the hospital. I was seven years old when that occurred, and as stated, congenital hypothyroidism was believed to have played a significant role in slowing the healing process of my injuries due to inadequate thyroid hormone replacement and monitoring.

I moved to Waco to live with my grandparents and started life over again – new school, new friends, new everything. New doctors. My new pediatrician was a beloved doctor in Waco – Dr. Peter Kochman. I went to high school with his two kind, smart children, Sam and Rachel. Dr. Kochman made a mistake, however, and I paid for it for five years before it was discovered.

I mentioned in an earlier post that I had been on a mixed dose of Synthroid – 25 and 50 mcg on alternating days. This is the same amount of medication I had been receiving since I was two years old. I also mentioned that prior to the accident in 1984, I had been seeing a pediatric endocrine specialist – the late, great Dr. Jim Marks – in Dallas, Texas.

 

Growing up without proper thyroid hormone replacement

For the next 5 years, I remained on the same dose of Synthroid and developed a variety of issues consistent with a child who is receiving inadequate thyroid hormone. The problem is, a lot of these symptoms are common complaints in that age group – tiredness, excessive sleep, weight gain, dry hair and skin, brittle fingernails, etc. I was growing taller, but not by much, and since my mother was only around 5’3″, it wasn’t thought to be indicative of a problem.

Keep in mind, this was happening during very important years – ages 7 through 12, when a lot of growth – muscles, brain, approach of puberty, etc. – are occurring. Not to mention the fact that my grandmother, Lucile, frequently commented on how fat I was getting, comparing me to my late mother who was short and skinny.  This added to my psychological strain, especially as I approached the awkward junior high and high school years. I was struggling, but I was still excelling in my school work and trying hard to keep moving forward.

Saved by Dr. Harris and Dr. Marks

One day, we were at Dr. Kochman’s office for a check-up, and he reported to my grandmother that he had colon cancer. He died soon after at the too-young age of 48. I was transferred to another pediatrician, Dr. Glenna Harris, who immediately recognized and solved my problems.

Dr. Kochman was a good pediatrician, but he made the mistake of believing he knew enough about the endocrine system to manage my thyroid hormone replacement himself. He had me tested regularly, but he never adjusted my medication. Dr. Harris found a letter in the back of my medical file from Dr. Marks wanting to know what had happened to me and why I had not been brought back to him. Dr. Harris quickly put things in motion, and I was back under Dr. Marks’ care within weeks. My Synthroid prescription was bumped from 37.5 mcg to 100 mcg, and things started getting back to normal.

What bothered me most about this was that Lucile was more concerned about losing Dr. Kochman than she was about my inadequate thyroid hormone replacement during those important childhood years. Remember, thyroid hormones affect the processes of every cell in the body. I cannot stress enough how important this is!  Growth, brain development, sexual maturity, everything!

 

Assessing the Damage

Having survived this episode at such a critical time in development, I still wonder if there might not have been permanent damage in some parts of my system. It’s hard to say what form it might take. It seems to me that the inherent weakness caused by a continuously increasing lack of support to the cells over time could potentially cause any number of issues. I think specifically about autoimmune conditions and psychological symptoms.

During those five years, I would occasionally call my grandparents to take me home from school – I couldn’t explain the problem, I just didn’t feel well. Usually, Lucile would make me go to the doctor, but I think after a while, even she realized it was in my head and would just bring me home for the day. I heard her, on at least one occasion, tell someone it was because of my parents’ death, and I can understand why she might have thought that, but it had nothing to do with that. I just didn’t feel right and wanted to go home. The next day, I’d be back at school like nothing had happened.

 

Anxiety and Depression

When I was 13 years old, I got a prescription of low-dose Xanax (alprazolam) from Dr. Harris for general anxiety. I didn’t use it much and certainly didn’t abuse it, but I did use it when I needed it, and it helped. Now, it takes an act of Congress to get a prescription for Xanax. It’s sad that it has come to this because I’ve known several people who used it responsibly (including myself) and got a lot of relief from it. I have had anxiety problems on and off throughout my life, particularly with obsessive thoughts about worrisome things, repeatedly reliving conversations and events, analysis paralysis, difficulty making decisions, insomnia, and depression.

A few years ago, I went through severe depression that lasted a couple of years.  It was the most difficult time in my life, and I’ll try to talk about it more at a later time.  In late 2017, my primary care physician put me on Zoloft, and all of those things improved to a degree I never thought possible. I still struggle in times of stress, but I am no longer underwater, gasping for psychological breath and lacking the ability to act.

In my high school years, things were better. I saw Dr. Harris and Dr. Marks regularly, I thinned out and grew up a little more and resumed a more normal type of life for my far-from-normal history. I still thought I was fat, but more in a normal-teenage-girl way. Lucile did not help.

In 1995, I entered Texas A&M University, and I had a wonderful endocrinologist in College Station – Dr. Aiyanadar Shanmugam, or Dr. Shan, as he suggested.  He took wonderful care of me, and I still miss him.  

Lasting Effects of Trauma and Hypothyroidism

Partially due to the complications caused by inadequate thyroid hormone replacement after the car accident, my right leg is 3/4″ longer than my left leg, so I limp a little, and my back isn’t straight. I wore a lift in my left shoe in high school and participated in tennis (I do say “participated” instead of played – ha ha!), but the difference in leg length (I was kinda clumsy and off-balance anyway) and an ever-present fatigue was a hindrance to playing much sports. I had been through plenty of physical therapy in 1984-1985, but my right leg had sustained so much damage that I never regained full movement in that knee. It’s hard to ride a bicycle, and I can’t sit on my feet or sit cross-legged anymore.

One thing that never seemed to go away was the fatigue, and yet, I had a lot of trouble sleeping. Saturday and Sunday mornings, I would sleep until noon if I was allowed to. Late morning has always been (and still is) the period in which I get my best sleep and have my most interesting dreams! During that time, people would frequently come to visit on weekend mornings, and I wasn’t too happy about having to drag myself out of bed to socialize at 9:30 in the morning. Sorry, people. I just wasn’t wired that way.  They didn’t know, of course.  

I’ve spent a lot of time talking about myself. I do plan to talk more generally about hypothyroidism, but I wanted to start by explaining how it has affected me and why there would be any reason to listen to what I have to say.  If you have any questions, please ask!  I’m happy to help any way I can.

Until next time,

Peace be with you, and stay healthy and safe!

Laura

4 thoughts on “Congenital Hypothyroidism – Inadequate Thyroid Hormone Replacement”

  1. I am so sorry about your parents and the trauma you went through during your childhood. It is not easy going through these trying times without your parents, especially your mother, I can only imagine!

    The worst part of it is being unable to explain yourself and people not understanding you and getting tired of your attitude. Although I don’t have”congenital hypothyroidism” but I understand what it means to be traumatized.

    Reply
    • Thank you, Lizzy.  It was hard to write all that down, but I was glad I finally did it.  It is truly frustrating to be a witness to something and have others, particularly someone so close, to tell me it didn’t happen that way. 

      The older I get, the more I miss my them both, but especially my mother.  I miss the opportunity to know them as an adult.  Thank you for your comment.  Have a great weekend!

      Reply
  2. Having hormone Thyroid deficiency is huge psychological issue, especially discovery was not found until later part of her childhood, which causes some permanent intellectual disability. and to depend on medication for the rest of your life. 

    My experience with thyroid, I develop thyroid gland during adult hood, and had to get an operation for an over growth lump that was hindering me from breathing, I was never placed on any medication, just had a long scar to show for that procedure. 

    Given the history she maintained the strength of a hero that cannot be broken. Loosing both of her parent at such  young age, it’s a trauma by it self. But, looking on her pictures she looks very normal no form of disability. 

    The overall of this topic is an excellent piece of writing and history behind it. 

    Reply
    • Thank you for your kind words!  I am sorry to hear about your experience.  That must have been quite scary for you!  I’m glad to hear that your surgery was successful and that you do not have to be on medication – truly a blessing. 

      Take care, friend!

      Reply

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