Found A Friend

July 24, 2022

I was recently contacted by another person who, like me, was born without a thyroid. We met on Facebook and have started communicating privately. This is precisely the reason I started this site and blog, to connect with others, few though they may be, who were born without a thyroid. Hypothyroidism is not an uncommon condition, but to be born without one… in 45 years, she is the first person I have come in contact with in the same boat I am in. Same conditions, same complications.

To her, and to others – you are NOT alone!

I am so grateful to have found another who shares this unusual condition. If you are struggling with the same issues, please reach out to me here or on Facebook. I have not been particularly consistent in my Facebook access, but I will do better, for her sake and for yours. Even if you were not born without a thyroid and developed your thyroid issues later in life, you are welcome here. I hope to provide education, connection, and above all, caring support to any who struggle with these issues.

It has been over two years since I started this website (in another form). Work and life have kept me from staying up to date with it. The website needs a lot of work. Many of the links may not go where they are supposed to anymore, and most of the pictures need to be updated, but I will be working on that and will try to make updates weekly.

Yours in Christ,

Laura

Hypothyroidism Symptoms: Brain Fog

Originally published October 2020

Howdy everyone!  Sorry it’s been so long since my last post, but I’ve been involved in so many projects.  I also went through a week of brain fog shortly after my most recent post.

What is brain fog?  It’s pretty much exactly what it sounds like.  It’s a form of mental confusion that, in this case, is related to hypothyroidism.  We all have days where we can’t seem to remember things or just have those little “senior moments”, but brain fog is a bit more pervasive and can be quite distressing at work, during projects, while trying to write, or when you’re just busy with life. 

I would characterize brain fog as general confusion touching nearly everything I’m doing (or trying to do).  I feel “out of it”, disoriented, not fully conscious, and I can’t concentrate.  I have a very difficult time trying to think of the correct words.  I get to the word, and it just floats away.  This is exactly what happened a few weeks ago, after my last post.  I couldn’t write because I couldn’t think straight for about a week. 

I eventually get back to the words I’m trying to find, but I have to concentrate too hard at a time when concentration is just plain difficult.  I feel lethargic and get increasingly uninterested in or frustrated by my task.  This is especially irritating when I’m trying to work.

Regaining Focus

Whenever possible at these times, I try to find something fairly mindless to do – things I have done so much, they are automatic and don’t require a lot of thought – video games, for example.  It may sound funny, but they actually help a lot because I can regain focus and work to concentrate on something unimportant until the fog lifts. 

Creative tasks also help.  I did a lot of sewing that week.  It requires concentration and focus, but not the same kind as my writing and other work tasks (like my former job as an accounts payable clerk).  I could have also fallen back on my crochet work – I have a huge waffle-weave crochet blanket that I occasionally work on.  It’s a good thing to pull out and work on when I’m in the fog.  It’s non-invasive to my brain, and I feel like I’m at least accomplishing something.  Plus I can watch TV or listen to an audiobook at the same time. Reading a book during a period of brain fog is iffy for me. I end up reading passages several times over to comprehend/remember what I read, though Douglas Adams is a good choice.

The Link Between Hypothyroidism and Brain Fog

So, why does hypothyroidism cause brain fog?  The simple answer is that your brain requires thyroid hormone, just like the rest of your body, in order to function properly.  Remember when I said that one of the drawbacks of getting all of your thyroid hormone from medication is that your body cannot adjust to what it needs, particularly in times of stress or trauma?  Because of this, brain fog is something to pay attention to. 

If my brain fog hung around too long, I’d go straight to my doctor to have my thyroid hormone levels checked.  Likely, other symptoms would be manifesting themselves as well, but brain fog is as good a metric as any for potential problems. It does not necessarily indicate a big problem. Even when my medication is stable, I still get it from time to time. 

Taking Care of Yourself

As with any other symptom of hypothyroidism, it is the severity and continuation of symptoms that should raise your alarm.  Anything going on that makes you feel particularly uncomfortable should be discussed with your physician or endocrine specialist.  Certain thyroid medications may work better for you than others like natural dessicated thyroid medicine vs. synthetic or a time-release formula vs. a generic.  

It is also important to remember that thyroid problems tend to be co-morbid with other conditions like diabetes, Celiac disease (gluten allergy), rheumatoid and psoriatic arthritis, and auto-immune diseases, including lupus and multiple sclerosis.  Staying on top of your health, getting your thyroid hormone level tested regularly, and paying attention to your body and your symptoms are your most important weapons against complications from hypothyroidism.

Remember: YOU are in control of your body, your symptoms, and your comfort level with them. 

Stay healthy and safe!

Laura

Born Without A Thyroid – A Review of Congenital Hypothyroidism

General Information, Symptoms, Causes, Rates of Incidence, Screening, Treatments, and Prognosis of Congenital Hypothyroidism

There’s all kinds of information out there about hypothyroidism. Part of the reason I wanted to start this blog is because I have not found much information regarding permanent congenital hypothyroidism. In fact, “anathyroidism” seems more appropriate a term due to it not being there at all, but as I understand it, “anathyroidism” isn’t actually a word.

Many children who are born with hypothyroidism grow out of it or at least improve over time, so a lot of the research on hypothyroidism deals with that rather than a permanent condition. I found a wonderful open-access article from the Orphanet Journal of Rare Diseases. It’s quite long and pretty dry, so below are excerpts of the most relevant information. You can read the entire article here, if you are interested in learning more.

[My comments and tips will be bracketed like so].  

General Description of Congenital Hypothyroidism

“Congenital hypothyroidism (CH) occurs in approximately 1:2,000 to 1:4,000 newborns. The clinical manifestations are often subtle or not present at birth. This likely is due to trans-placental passage of some maternal thyroid hormone, while many infants have some thyroid production of their own. Common symptoms include decreased activity and increased sleep, feeding difficulty, constipation, and prolonged jaundice. On examination, common signs include myxedematous facies [puffy face with dark circles under eyes], large fontanels [soft spot on head], macroglossia [thick tongue], a distended abdomen with umbilical hernia, and hypotonia [decreased muscle tone]. “Congenital hypothyroidism (CH) is defined as thyroid hormone deficiency present at birth. Thyroid hormone deficiency at birth is most commonly caused by a problem with thyroid gland development (dysgenesis) or a disorder of thyroid hormone biosynthesis (dyshormonogenesis). These disorders result in primary hypothyroidism. Secondary or central hypothyroidism at birth results from a deficiency of thyroid stimulating hormone (TSH).” “Congenital hypothyroidism is classified into permanent and transient CH. Permanent CH refers to a persistent deficiency of thyroid hormone that requires life-long treatment. Transient CH refers to a temporary deficiency of thyroid hormone, discovered at birth, but then recovering to normal thyroid hormone production. Recovery to euthyroidism typically occurs in the first few months or years of life.”

Incidence Rates

“Prior to the onset of newborn screening programs, the incidence of congenital hypothyroidism, as diagnosed after clinical manifestations, was in the range of 1;7,000 to 1:10,000. With the advent of screening of newborn populations, the incidence was initially reported to be in the range of 1:3,000 to 1:4,000. With more experience from state, regional, and national screening programs, it has become apparent that the incidence varies by geographic location. A report from the French newborn screening program summarizing a 20 year period found the incidence of permanent hypothyroidism to be 1:10,000, whereas a report from the Greek Cypriot population over an 11 year period found the incidence in newborns to be 1:800.” “In addition, there is some variation in the incidence among different racial and ethnic groups, and the mix of these groups has changed. Several U.S. programs have reported a higher incidence in the Asian, Native American, and Hispanic populations and lower in the American Black population as compared to the White population… A summary of the New York State program during the years 2000 to 2003… found the incidence nearly double in twin births (1:876) as compared to singletons (1:1765), and even higher with multiple births (1:575). Older mothers (> 39 years) had a higher incidence (1:1,328) compared to younger mothers (< 20 years, 1:1,703)… Nearly all screening programs report a female preponderance, approaching 2:1 female to male ratio.”

Congenital Hypothyroidism Symptoms

“Symptoms of congenital hypothyroidism are initially nondescript; however, the maternal and pregnancy history may provide some clues. In twenty percent, gestation extends beyond forty-two weeks . One may also find evidence of maternal autoimmune thyroid disease or an iodine deficient diet… Once home, these babies are quiet and may sleep through the night. Additional symptoms include a hoarse cry and constipation.” “Up to one third have a birth weight greater than the ninetieth percentile. On initial examination, the most common signs are umbilical hernia, macroglossia and cold or mottled skin. Thyroid hormone is also important in the formation and maturation of bone. This can lead to a wide posterior fontanel of greater than 5 mm. This, along with persistent jaundice and poor feeding are the most striking clinical features.” “Congenital hypothyroidism appears to be associated with an increased risk of congenital malformations… Of these, the majority were cardiac. Other associated malformations include spiky hair, cleft palate, neurologic abnormalities and genitourinary [urinary tract] malformations. Also, the incidence of congenital hypothyroidism is increased in patients with Down’s Syndrome.”

Congenital Hypothyroidism Causes

“Permanent congenital hypothyroidism may be due to primary or secondary (central) causes. Primary causes include defects of thyroid gland development, deficiencies in thyroid hormone production, and hypothyroidism resulting from defects of TSH binding or signal transduction. Peripheral hypothyroidism results from defects in thyroid hormone transport, metabolism, or resistance to thyroid hormone action. Secondary or central causes include defects of thyrotropin releasing hormone (TRH) formation or binding and TSH production.” “In iodine sufficient countries, 85% of congenital hypothyroidism is due to thyroid dysgenesis… Thyroid dysgenesis presents in three major forms: thyroid ectopy, athyreosis and thyroid hypoplasia [incomplete development]. Thyroid ectopy refers to an ectopic location of the thyroid gland. This accounts for two-thirds of congenital hypothyroidism due to thyroid dysgenesis and is twice as common in females. In these cases, a thyroid remnant is usually found along the normal pathway of the thyroglossal duct. This represents the path taken by the developing thyroid as it descends from the base of the tongue to its final location in the neck… Athyreosis refers to the complete absence of thyroid tissue. Athyreosis and thyroid hypoplasia account for the remaining one third of thyroid dysgenesis.” “Thyroid dysgenesis is generally thought to be sporadic in occurrence. However, recent evidence points to the possibility of a genetic component. One study of all cases of thyroid dysgenesis found that 2% were familial in occurrence. Additional studies also showed that 7.9% of first degree relatives of infants with congenital hypothyroidism had a thyroid developmental anomaly.”

Congenital Hypothyroidism Screening for Infants

“The specimen used for newborn screening tests is blood from a heel-prick collected on special filter paper cards. The specimen is routinely collected between two and five days of age (or at discharge from the hospital, if this occurs earlier); some programs use [umbilical] cord blood for screening. In addition, some programs also routinely obtain a 2^nd specimen between two and six weeks of age.” “Once an infant has been detected with abnormal thyroid screening tests, they should be recalled immediately for examination, and a venapuncture blood sample should be obtained for confirmatory serum testing… In the first few days of life, serum TSH [Thyroid Stimulating Hormone] can be as high as 39 mU/L, as a result of the TSH surge that occurs shortly after birth (this is the reason that the filter paper screening test cutoff is approximately 30 mU/L)… Although levels of all hormones are higher at 1-4 days of age, by 2-4 weeks of age they have fallen closer to the levels typically seen in infancy.”

Hypothyroidism Treatment

“Congenital hypothyroidism is one of the most common treatable causes of mental retardation. Studies have shown that the timing of therapy is crucial to neurologic outcome. Indeed, there is an inverse relationship between intelligence quotient (IQ) and the age at diagnosis. Even when diagnosed early, neurologic development may suffer if treatment is not optimized in the first two to three years of life. It is therefore important for these patients to receive early treatment and close follow up.” “The overall goal of therapy is ensure that these patients are able to have growth and mental development that is as close as possible to their genetic potential. This is achieved by rapidly restoring the free T4 and the TSH to the normal range and then maintaining clinical and biochemical euthyroidism.”

Hypothyroidism Medication

“Levothyroxine (l-thyroxine) is the treatment of choice. Although triiodithyronine (T3) is the biologically active form of the hormone, most T3 in the brain is formed from local deiodination of T4; thus, T3 replacement is not needed for normal neurologic functioning. In a study of forty seven infants given varying treatment doses of l-thyroxine, serum T3 normalized and remained normal regardless of the treatment dose used, again suggesting that treatment with l-thyroxine alone is adequate.” “Currently, only l-thyroxine tablets are approved for use in the United States. Thyroid suspensions prepared by individual pharmacies may result in unreliable dosing. In Europe, however, l-thyroxine drops have been successfully used.” “Some nutritional supplements or drugs are known to interfere with absorption of l-thyroxine.” “These include:

• Soy protein formulas
• concentrated iron
• calcium, aluminum hydroxide
• Cholestyramine and other resins
• fiber supplements
• Sucralfate

Finally, prolonged heat exposure may reduce the efficacy of l-thyroxine tablets.”

Congenital Hypothyroidism and Developmental Delay

“The dose and timing of thyroid hormone replacement are important in achieving optimal neurocognitive outcome. A delay in serum T4 normalization over one week can result in lower intelligence scores.” “Infants with severe congenital hypothyroidism are at greater risk for developmental delay. This has been illustrated in studies done in both Europe, the United States and Canada. Therefore, rapid replacement with adequate doses of l-thyroxine is particularly important… [A] study done in 61 infants compared early versus late treatment with low versus high dosing. Results showed that in infants with severe congenital hypothyroidism, only those treated early (< 13 days) and with higher doses (>9.5 mcg/kg/day) achieved normal psychomotor development at 10-30 months of age.” “[H]igher doses of l-thyroxine lead to better overall developmental outcomes. However…[studies note that] children on high dose l-thyroxine treatment had significant problems with hyperactivity, delinquency and aggression. Other studies have also shown that high serum T4 levels contribute to poorer attention in school aged children. These highlight the dangers of overtreatment in congenital hypothyroidism.” “Clinical evaluation should be performed every few months during the first three years of life along with frequent measurements of serum T4 or free T4 and TSH. The American Academy of Pediatrics recommends the following monitoring schedule.

• At two and four weeks after the initiation of l-thyroxine treatment
• Every 1-2 months during the first 6 months of life
• Every 3-4 months between 6 months and three years of age
• Every 6-12 months thereafter until growth is complete
• Four weeks after any change in dose
• More frequently if results are abnormal or non-compliance is suspected.”

“The serum T4 should normalize within one to two weeks and the serum TSH should become normal in most infants after one month of treatment.”

Prognosis

“Prior to the newborn screening era, when a diagnosis of congenital hypothyroidism was made after development of clinical manifestations, studies reported an inverse relationship between the age of diagnosis and IQ outcome. A study from Pittsburgh Children’s Hospital showed that if thyroid hormone treatment was started between birth and 3 months of age, the mean IQ was 89 (range 64 to 107); if treatment was started between 3 and 6 months of age, the mean IQ was 71 (range 35 to 96), while if treatment did not start until after 6 months of age, the mean IQ dropped to 54 (range 25 to 80) . A report from Sweden found that ‘in spite of an efficient National Health Care Program for infants, the diagnosis was delayed until after 3 months in 52 percent of cases’.” “The advent of newborn screening programs in the mid-1970s allowed earlier detection and treatment of infants with congenital hypothyroidism. Such efforts have been successful in achieving a much-improved neurocognitive outcome. Despite this, however, not all studies report a completely normal outcome. In a recent review of 51 published reports of IQ outcome in infants with congenital hypothyroidism as compared to sibling or classmate control subjects, 18 found no significant IQ difference, while 33 found a significant difference, with IQ ranging between 5 and 25 points lower in infants with congenital hypothyroidism. In evaluating important variables, there is evidence that age of onset of treatment, starting l-thyroxine treatment dose, and severity of hypothyroidism each plays an important role in neurocognitive outcome.”

Rastogi, M.V., LaFranchi, S.H. Congenital hypothyroidism. Orphanet J Rare Dis 5, 17 (2010). https://doi.org/10.1186/1750-1172-5-17

Until next time, peace be with you, and stay healthy and safe!

Laura  

Thyroid Function and Childhood Development – Born Without A Thyroid

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The relationship between thyroid function and childhood development is critical.  While I assume most people reading this already know what their thyroid is and what it does, plenty of people out there have no idea. If you’ve never had a problem with it or never known anyone who has, you might not have ever even thought about it.

From WebMD:

The thyroid is a butterfly-shaped gland that sits low on the front of the neck. Your thyroid lies below your Adam’s apple, along the front of the windpipe. The thyroid has two side lobes, connected by a bridge (isthmus) in the middle. When the thyroid is its normal size, you can’t feel it. Brownish-red in color, the thyroid is rich with blood vessels. Nerves important for voice quality also pass through the thyroid. The thyroid secretes several hormones, collectively called thyroid hormones. The main hormone is thyroxine, also called T4. Thyroid hormones act throughout the body, influencing metabolism, growth and development, and body temperature. During infancy and childhood, adequate thyroid hormone is crucial for brain development. Human Anatomy By Matthew Hoffman, MD

The Thyroid Controls Every Cell in Your Body

I have heard it said that this little butterfly-shaped endocrine gland controls every cell in your body. It doesn’t get much more important than that. Imagine starting out in life without something that affects ALL of your systems and keeps them running smoothly.  It’s a bit like trying to run your car without an alternator.

One in every 2,000 to 4,000 people is born with hypothyroidism. We’re talking close to 100,000 people out of 330,000,000 in the United States or 0.03% of our population. Not too many of us running around out there.

While a baby is in utero, it is receiving everything it needs from Mom, including thyroid hormones, assuming Mom does not also have a thyroid function problem. Once born, it takes a while for the thyroid hormones to taper off, so it may be weeks before symptoms appear. Symptoms include poor growth and development, puffiness, poor muscle strength, sleeping all the time, jaundice, large soft spot on the head (fontanelle), etc. At any age, over time and without treatment, symptoms increase in severity to myxedema, coma, and death. I will discuss symptoms more in depth in a later post.

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My Childhood Development Journey

My husband (Joel) and I moved to McGregor, Texas about a year-and-a-half ago from a house I had lived in (and accumulated stuff in) for 34 years, and there are many, many things I cannot find. One thing I was able to find is a stack of papers discussing developmental tests related to thyroid function that my parents had set up between ages 3 to 5. I remember at least one of these occasions because I got to ride a tricycle up and down the halls while the test administrators were talking to my parents.

The first test was by The University of Texas Health Science Center at Dallas, and they have the wrong birth date listed! It does list the name of the physician who discovered my problem – Dr. Richard Bates, and that I was nine weeks old when I was diagnosed (August 30, 1977). Somewhere in my scrapbook boxes, I have a note that my mother wrote dated August 30, 1977 – a prayer for her baby daughter who was very sick and the cause unknown – the very day it was diagnosed.

Dr. Jim Marks was a pediatric endocrinologist I saw from that point on until 1984, and again from 1989 until the mid 90’s. I remember him well including his fuzzy beard, masculine cologne, and giant horn-rimmed glasses.  He was a wonderful doctor who took excellent care of me for the time that we had. I say it that way for a reason, but I don’t want to get ahead of myself.

Childhood Development Evaluations

Attached here is a copy of the childhood development evaluations in PDF format from that time, if you are interested in what they were testing for and the results of those tests. Basically, what it says is that I was a super cool kid who was astronomically smart, hilariously witty, fantastically entertaining, really, really, really, ridiculously good-looking, and sincerely humble.

I might be laying it on a little thick there!  What it actually indicates is that with proper treatment and consistent medication, even above-average childhood development is possible! Proper, consistent monitoring and treatment of thyroid hormone levels is critical!  This cannot be over-stressed. Monitoring consists of blood samples taken several times a year during childhood.  They should be taken any time when fluctuation is detected or likely.  For example, puberty causes many changes in the body, and it is important to keep a close eye on thyroid hormone function during this time. Self-awareness is also very important!  Listen to what the body is telling you about itself. We know our bodies better than anyone else, and if you believe there is a problem, get it checked out!

On my next post, we’ll continue our journey in 1984.

Stay healthy and safe!

Laura

Congenital Hypothyroidism – Inadequate Thyroid Hormone Replacement

Originally published Spring 2020

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

web.archive.org

My parents and I were killed in a car accident…

Originally published Spring 2020

Joel and I talk about before-and-after events.  These are events in our lives that cause fundamental changes to who we are, what we do, and how we live.  Sometimes, they don’t even have to occur – just the recognition of the depth of what could have been. 

For example, Joel nearly cut his finger off with a butcher knife one time.  He sliced it very deeply at an angle, all the way down to the bone.  He wouldn’t even look at it at first because he was afraid of the severity, but the worst-case scenario did not occur, thankfully.  The flap of skin healed up nicely without stitches, and he was none the worse for wear.  We talked about it though – how quickly normal life (the before time) could have ended in seconds with the loss of a finger – his left index finger, if I recall correctly. 

This post is about a before-and-after event that did occur.  It’s about traveling happily down life’s highway and being whipped around a 90-degree fork in the road, never to see that old highway again.  I have never written all of this out.  For one thing, I didn’t believe I needed to, and for another, I didn’t know some important details about it until I was in my 30’s.  In fact, the title of this post comes from the knowledge I gained in the last decade about what really happened and how much was actually lost. 

I have told countless people the phrase “My parents were killed in a car accident when I was seven years old,” throughout my life – it has become a cadence – but in the last few years, my mind inserted myself as well, and I have to catch myself to keep from saying I was killed, too.  But perhaps, it is just as accurate.  It’s the before-and-after effect.  That life and its future are gone, and another takes their place.  I was there, and I am here, but I would never again be the person who woke up on June 30, 1984 and walked out of the house with my parents for the last time.

Before – and – After

My father worked as a store clerk for 7-11 in Waco, Texas, when he was young.  He joined Southland Corporation and rose to district manager of 7-11 before he died at age 37.  He was quite successful, and we were living well in a beautiful, 4-bedroom house in Grand Prairie, Texas, near his office in Dallas.  As I recall, he wanted to find a piece of land – maybe a small farm or ranch that we could go to on weekends.  (He spent some years in Nebraska as a child, and our family had some land at the Lake of the Ozarks in Missouri).

On Saturday, June 30, 1984, a week after my seventh birthday, my parents and I were driving around north central Texas, casually looking at land and just enjoying the day together.  Toward evening, we were traveling on what we locally call “Corsicana Highway” – Texas State Highway 31.  I’ve no idea where on the road we were, just that we were close to Corsicana. 

This was before mandatory seat belt laws, and not one of us was wearing one. My father was driving, my mother was in the passenger seat, and I was playing in the back seat of my father’s new, light blue Lincoln Town Car.  I remember seeing the van that passed us in a no-passing zone, seeing the red pickup truck that swerved out of the oncoming lane to avoid it, and hearing the collective yell rising in our throats that was cut short when we made contact with the pickup truck.

I remember waking up bent over the front seat and feeling pressure on top of me.  I remember turning my head to the left to see my father slumped over the steering wheel, a thin trickle of blood pouring out of his mouth and the sound of it hitting his jeans.  I remember calling out to him louder and louder and getting no response.  I remember sensing that my mother was not beside me on the right.  I remember hearing her voice from outside the car, calling my name.  I answered, and she said in a voice not her own that it would be okay, that “they” would get me out, but I didn’t even recognize that it was her.  She had been thrown through the windshield and would not survive long. 

I remember no physical pain at all.  My right thigh was mangled such that my femur was broken in half, and shafts of it were sticking out the front and back of my leg.  My left femur was broken just above the growth plate, and my right tibia was also broken, but thankfully these were not compound fractures. 

I had hit the dashboard, having flown from the backseat over the front seat, but the damage was minor.  I have a scar about an inch long under the right side of my chin.  It could have been much worse.  My hair was full of broken glass, but there was no brain damage.  Some years later, I found the little blue Jordache bag I had with me that day in a closet and opened it to find shards of broken glass still inside. 

I don’t remember being pulled out of the car, but I do remember something heavy being lifted off me and people talking to me.  I remember the handsome paramedic who put me in the ambulance and stayed with me on the ride to the hospital.  I couldn’t stop looking at him, but he told me to close my eyes and rest as we rode. 

I remember being in the emergency room at the Corsicana hospital and having to turn my head and vomit while the nurse tried to put something in my nose.  I remember my grandparents, Lucile and Walter, walking into the room to see me lying there, damaged but alive, after just having lost their daughter and son-in-law. 

I remember waking up in the hospital room, watching Lucile speak to a nurse, and asking where my parents were.  I remember Lucile leaving the room as the nurse told me they were dead.  At age seven, I couldn’t quite comprehend it, and my response was simply, “Oh…” 

I was in traction.  Both legs hanging up in the air like plastered sausages.  Cards, flowers, and stuffed animals flowed in from everywhere.  Then came the move to Waco, where my grandparents lived.  My parents had written and completed their will not three months prior.  It gave custody directly to my grandparents, so that simplified where I was to go.  Preparing for the move from Corsicana to Waco was the worst pain I recall from the entire ordeal.  I was screaming as they let my tractioned legs down for transport.  I remember nothing of the journey to Hillcrest Baptist Medical Center in Waco. 

At that time, Hillcrest was still on Pine Street, where the police department is now.  The children’s ward was on the first floor, so I didn’t get to enjoy the top floor pediatric unit that they built some years later.  Now it’s all been moved to Baylor-Scott & White Hospital out on Highway 6 and I-35, but back then, I was right there on the ground floor, surrounded by folks wanting to do anything for this poor, sweet little girl who had just lost everything.  I was, obviously, unable to attend my parents’ funeral, and I was much older when I found pictures, letters, and a whole scrapbook full of cards and well-wishes from my Dad’s office.  

Kids, as a rule, are resilient, partly because they don’t understand what’s happening – they have no choice but to just go with life as it comes because all of it is out of their control.  A strong foundation is crucial, and that was something I did have.  I was smart, generally happy, and compliant, and that made the hospital days easier.  I did crafts, read books, and whatever else I could find to stay occupied.  I had many visitors of all kinds – friends, family, doctors, residents doing research, Uncle Miltie the clown, clergy – you name it, they came to see me.   My room was full of toys, plants, and balloons. 

My grandparents enrolled me at St. Alban’s (Episcopal) Elementary School, and I spent most of 2^nd grade in the hospital or at home with my grandparents.  When I was released from the hospital the first time, I was in a body cast from my armpits down to my toes.  Those were difficult weeks.  I couldn’t reach anything to scratch it.  After the body cast, my other injuries had healed, so I ended up with regular cast on my right leg.  This was around Christmas, and we moved to a bigger house near the Heart of Texas Coliseum (now known as the Extraco Events Center).  On January 4^th, 1985, that cast was removed. 

January 14^th was a cold and icy day.  We had someone at the house working on the heater, I believe, and he was on the roof when I fell.  I was hopping around on my crutches and slipped on some ice.  Down I went, and just like that, my right femur was broken again.  The man on the roof came quickly to my aid – he was a former paramedic. 

I was back in the hospital for another six weeks or so, continuing my 2^nd grade classwork from the hospital again.  My teacher, Mrs. Dupree, and Father Mark and Father Paul came to see me often, and we got through the schoolyear just fine.  Again, that solid foundation supported me, and despite my hardship, it was determined that there was no need to hold me back a year.  I went on to the third grade upright and as normal a kid as I could be under the circumstances, and I made all A’s until my eyesight caused me some temporary problems in 4^th grade. 

The Accident

For many years, all I ever heard from Lucile was that the accident had been caused by the man in the red pickup truck, whose name I do not know.  He was drunk, had five DWI’s, and had thrown his wife through a plate glass window the week before.  I can’t tell you how many times I heard that story.  But that wasn’t the whole story. 

I mentioned another driver who passed us in a no-passing zone.  That started it.  The guy in the pickup truck who was allegedly drunk may not have caused anybody a problem that day if not for the other driver, though I’m sure if he was drunk, it didn’t help matters.  Pickup truck man swerved to miss No-passing-zone man and was forced into our lane.  In addition, a construction company had left material piled up along the road so close that there was no escape possible for us or for Pickup truck man.  No-passing-zone man was not involved in the accident, but he caused the death of Pickup truck man and my parents, and he orphaned a kid.  I have no doubt that No-passing-zone man died that day in his own way, as well. 

Lucile and I had issues with what happened after the accident.  I had my story, and she had hers, based on what she was told – a wrecker service man was the first on the scene.  Per Lucile, I was in the back seat, I never lost consciousness, and the wrecker service man found me choking on vomit and saved my life.  She never believed the story I told her, and I don’t remember the story she told me, so that part is a mystery to me.  I let it go after a time, however, because something else changed that made be believe it was best to just leave well enough alone. 

Lucile told this whole story to everyone – drove me kind of crazy because I was paraded in front of people as this poor little orphan girl, and here now, listen to this horrible story that isn’t quite accurate as she cries while she tells it again, and again, and again.  I’m not trying to be mean to her – she lost more than anyone should have to endure, but I did, too, and I didn’t want to live through it over and over again with what seemed like every person we came in contact with!  

Anyway, as I said, my mother survived for a time after the accident.  She was thrown through the windshield and was calling to me from outside the car when I came to.  Lucile accepted that for a while, but at some point, the story changed – suddenly, one day, Mom had “died instantly”.  It didn’t take me long to realize that Lucile could no longer stomach the idea of what had actually happened to her daughter.  For my part, I cared more about truth.  The truth was bad enough, but at least it represented reality.  I could not change the facts to suit me, but I had compassion enough for Lucile and what she believed she needed to not try to correct her.  Who could blame her?

The effects of hypothyroidism on recovery time and other complications

See, there actually is something related to hypothyroidism here!  Thyroid medication is measured in micrograms – these are exceedingly tiny units of hormone that control every cell in your body.  When the accident occurred, I was on a mixed dose of Synthroid – I took 0.25 mcg every other day and 0.50 mcg on the alternate days to average 0.375 mcg per day. 

One caveat: What follows involves some of my own theories, but they are based on a lifetime of personal observation. 

When trauma or illness or stress occurs, the body changes.  It reacts to adjust hormones to a level needed to deal with the problem.  Without a thyroid, the body cannot adjust like it should.  Periods of stress, just within normal life may cause increased symptoms of hypothyroidism, even if testing indicates your thyroid hormones are in the correct range.  Medication is at a fixed level, so there is no natural adjustment possible.  Can’t just adjust the medication in the moment either because it takes a couple of weeks for the new amount to normalize in your system. 

The car accident caused me severe physical and mental trauma despite my resilience.  It was believed by my doctors that when I slipped and broke my leg the second time, hypothyroidism played a role – I was not healing as quickly.  In fact, a memory just occurred to me that after I had been in the hospital for six weeks the second time, they were unable to release me because my healing was progressing too slowly, and they did not want a repeat performance. 

I have noticed that when I get a cold or the flu, it takes about twice as long for me to get over it than the people around me – especially Joel.  On the rare occasions he gets sick, he is better within a few days, whereas the same condition may keep me down for three weeks or more.  I attribute this to his time in the Navy – he’s been inoculated against everything, and he seems to have a healthier immune system overall. 

I have multiple immune system issues – I am lactose-intolerant, I have a condition called lichen planus (which affects the mucous membranes – I will discuss this in greater detail at another time), and most recently, I was diagnosed with asthma a few years ago and have always been prone to bronchitis.  Inflammation at every turn, it seems, and I think this is inextricably related to my lack of a thyroid and inability to adjust to bodily stress. 

So that brings up COVID-19.  I worked for Dealers Electrical Supply Corporate Office as an accounts payable clerk for nearly four years.  When the coronavirus became a thing here in Central Texas, our business was deemed an essential business because we are part of the electrical infrastructure.  The way our system works, it was not going to be possible for me to work from home, so I had a choice to make, and it was a difficult one.  I was good at my job, I enjoyed it, and I worked with wonderful people.  I also recognized that my asthma, at the very least, put me a greater risk for serious complications from coronavirus if I should contract it.  Joel was very concerned, and as the number of infected people in our county rose, I made the decision to leave Dealers and try to find work from home. 

I don’t know exactly what effects my hypothyroidism would have on my prognosis if I were to get the virus, but I gotta say, I don’t want to find out.  What I understand about coronavirus and the lungs is that the lungs get overwhelmed with fluid and the mucous membranes get inflamed.  Between my asthma and lichen planus, and the slow progression of illnesses that I postulate is related to my hypothyroidism, I am extremely concerned that coronavirus would kill me and kill me quickly. 

So this has been the motivation behind leaving my job, staying home, and beginning to write.  I have always wanted to find a job involving writing – I prefer it so much to speaking, so maybe this is my chance to do what I have always thought I would be best at.  In the past, I couldn’t find a topic I felt interested enough in or knowledgeable enough about to get serious.  I hope that finally I will succeed in this and ideally, find a way to support myself with it.

Thank you for taking the time to read this story.  It is my life, and despite my tragedy, I love my life.  I have a wonderful husband, two fantastically entertaining dogs, a good family, and friends who think too much of me.  Most importantly, I have God Almighty as my Father, and Jesus as my Hope for the next world. 

God bless.  Take care of each other.  Stay healthy.

Peace,
Laura

In my next post, I will tell you how my hypothyroidism was affected by a lack of proper medical knowledge for five years after the car accident.

Congenital Hypothyroidism: Born Without A Thyroid – My Story

Originally published Spring 2020

Thank you for visiting my site! I hope I can offer help and encouragement in your or someone you love’s journey through life with congenital hypothyroidism or the loss of this important little gland later in life.  I’ll begin with my own story.

I was born in June of 1977 in Dallas County, Texas.  My mother had carried me 10 months – I was supposed to be born May 18th, but I made it all the way to June 21st. She had normal thyroid function, as far as I know. I was 8 lbs. 9 oz. and otherwise healthy, but after a few weeks, my grandmother (Grandma Lee), who was a nurse, knew that something was wrong. She was very concerned but did not say anything to my parents, as they were already trying to figure out if something was wrong.  For instance, my navel would not heal.

A Little History

I regret that I do not know the doctor’s name who diagnosed me with congenital hypothyroidism (edit: Dr. Richard Bates), but he saved my life and likely many others. The story I was told (I have not been able to find a way to verify it, for the sake of full disclosure), is that the doctor who diagnosed me went to the Texas State Legislature and worked to make it a law that all children born in Texas should be tested for congenital hypothyroidism. It has become a nationwide law.

Congenital hypothyroidism is one of the most common and preventable causes of intellectual disability. Because most newborns show no signs of it, the condition is usually detected during routine newborn screening, which is mandatory at U.S. hospitals. The newborn screen, which is collected by gathering blood via heel prick 24 hours after birth, checks for congenital hypothyroidism and a number of other congenital diseases.
EndocrineWeb.com

By law, all newborns are screened in the first few days of life for serious diseases. The testing is done with a few drops of blood taken from the baby’s heel. One of the tests is for thyroid function. The blood is tested for amounts of hormones from the thyroid. It’s also tested for amounts of hormones that tell the thyroid to make more hormones. Your baby’s healthcare provider may also advise an imaging test of the thyroid gland.
University of Rochester Medical Center

Medication

After my diagnosis of congenital hypothyroidism, I was started on Synthroid, synthetic thyroid hormone, and I will require this medication daily for the rest of my life. I have tried the generic version – Levothyroxine – but on it, I am incredibly tired all the time. It is my understanding that Synthroid is a time-release formula, and I seem to function very well on it.  It’s a little pricier than the generic, but it is worth it to me.  Runs about $30.00 – $35.00 without insurance.

Being born without a thyroid is a very different thing than having a malfunctioning thyroid. I don’t have the insane ups and downs and severe struggles that people with Graves Disease and Hashimoto’s have. It is easier to regulate medication, identify changes in physical and mental symptoms, and to live with overall. I have great sympathy for people who are on the thyroid hormone roller-coaster and their loved ones.

That is not to say that living without a thyroid is easy. In my next few blog posts, I will discuss my history more in depth and how the long-term destruction caused by a violent auto accident in 1984 that nearly killed me five years later and changed my life forever.

Stay healthy and safe!
Laura