So many of you know that I have hypothyroidism. It's such a minor "disease" compared to most, but it has played a big part in my life for more than 15 years. The older I get, the more I realize how common thyroid issues really are and how many people they affect. It's kind of like when you buy a new red truck, all of the sudden, you become aware of how many red trucks are out on the roads. Approximately 10 million Americans have hypothyroidism and as many as 10% of women may have some degree of thyroid hormone deficiency. I am constantly asked when I was diagnosed and how my experience with hypothyroidism has been. I've decided to take the time to write down my thyroid story, something that I have never bothered to document until now. Hopefully this information will be of use to some of you who currently struggle with your thyroid. If you are interested, keep on reading! :)
When was I diagnosed? I was diagnosed with an extreme case of hypothyroidism at age 11, but unfortunately I had the condition for 3 years before it was discovered. Your TSH (Thyroid Stimulating Hormone) is supposed to be between 1-3 and mine was 2000. Yes, you read that right. My TSH was
2000. The levels work inversely, so when your TSH is high, you consequently have a low producing thyroid and when your TSH is low, your thyroid is working too hard. My thyroid was barely working and unfortunately that was taking a major toll on my young body.
What is hypothyroidism? Simply put, hypothyroidism is an "abnormally low activity of the thyroid gland, resulting in retardation of growth and mental development in children and adults if not treated quickly. Hypothyroidism upsets the normal balance of chemical reactions in your body." Your thyroid controls many things within your body including your metabolism and when it is off, it really screws up everything. Your thyroid affects your physical and mental state. The affects that can come from hypothyroidism are somewhat surprising and can be dangerous over time.
What symptoms did I have? Because my case was so extreme, by the time I was diagnosed I had almost every symptom. The symptoms to look for and that I experienced were:
Hard stools or constipation
Increased sensitivity to cold temperature
Fatigue or feeling slowed down
Heavier and irregular menstrual periods
Joint or muscle pain
Paleness or dry skin
Sadness or depression
Thin, brittle hair or fingernails
I was 11 years old and had almost no energy. I would go out and play and then take a nap afterwards. I didn't even have the energy to go outside and play some days. I had gained a good bit of weight out of nowhere. My skin was extremely pale and puffy. I was shy, sad, and very inward -- always pulling myself away from the crowds. My hair started to fall out and I even started my period during my 5th grade year. The biggest and most concerning symptom I had was that I hadn't grown in almost 3 years. Little did I or anyone know that I was a very sick little girl.
How was my hypothyroidism discovered? My mom had noticed I wasn't growing much after almost a year and mentioned it to my pediatrician. Being that I was only 9-10 years old at the time, my mom knew that consistent growth was supposed to be happening at this age. I was too young to be slowing down. Unfortunately because I was so young, the doctor never even considered testing me for hypothyroidism. She chalked it up to my parents being short and assumed that meant I would be too. My mom was still very uneasy, but tried to trust the doctor. I went back to the doctor for my regular check-ups and each time my mom would mention different symptoms I was having and that she was concerned. Again, the pediatrician didn't act on any of it and told my mom maybe I was just going to be a "bigger girl". My mom then asked my aunt, who is an endocrinologist (thyroid specialist), about my health. Once my mom told my aunt everything that had been going on, my aunt immediately wanted me to be tested for hypothyroidism. Yes, I was young and it was very rare to be diagnosed at such a young age, but the disease is also hereditary and it runs in my family. In fact, 3 of my aunts, my grandma, and my dad all have it. The blood results were clear: my thyroid was extremely hypo (very, very slow) and I needed to get on medication ASAP. Needless to say, we never went back to that doctor again and thankfully my condition was discovered before things got any worse.
What happened after I was put on medication? I was originally put on Synthroid (but later switched to Levothyroxine) and have to take a tiny pill each day for the rest of my life to maintain healthy thyroid levels. I was like a new kid once the medicine got in my system! I had energy. I dropped about 20 pounds in a matter of a few months. I was much more confident and outgoing. I was happier. My hair stopped falling out and my nails became healthy and less brittle. My periods stopped coming (they had only begun because of my untreated hypothyroidism) and my skin became warm and much more full of life. I was no longer puffy and sick looking. I also started growing again! The doctors say I might have lost .5 - 1 inch off my adult height, but thankfully my body was able to make up most of the growth I had lacked for years. My body had gone from being very sick to functioning very healthily and it showed.
How did my hypothyroidism affect my teenage years? My diagnosis is very different from most because I was diagnosed right before going into my teenage years. Most people's medication dosages stay fairly constant because their bodies are not constantly changing, but mine was a different story. Your thyroid already has a major effect on your hormones and being a teenage girl definitely didn't help the process. My teenage years were filled with switching medication dosages every 6 months. I couldn't ever find the right dosage for me because my body was at the pinnacle of growth and change from ages 13-18. Thankfully, my doctor stayed on it and my levels were fairly stable despite all the hormonal and bodily changes I was experiencing. I did go to a specialist every 6 months to a year until I was 18 years old. At that point, my thyroid levels were much more stable and I began going to a general practitioner. In case you weren't aware, specialists are expensive!
How did hypothyroidism affect my pregnancy? Thankfully my hypothyroidism has been stable for a while now, but little did I know that pregnancy would majorly change that. When I found out I was pregnant, my thyroid levels were also tested. At that point, my levels were showing I was slightly hyper (thyroid working too hard), so my general practitioner reduced my dosage. My doctor asked me if I wanted to resume seeing a specialist during my pregnancy and being naïve, I said no. I figured the general doctors had it under control. My OBGYN asked about my hypothyroidism and I told them I was seeing my regular doctor for it. The OBGYN assumed it was handled because I had basically told them it was or at least I thought it was. At 12 weeks pregnant, the OBGYN tested my thyroid levels during a check-up because I had asked them to. It had only been 8 weeks since I had seen my general doctor and my medication had been changed. I thought surely not much could have changed during that time. Unfortunately, I am one of the lucky ones whose thyroid is majorly affected by pregnancy. (Some people who have thyroid issues go throughout their entire pregnancy without changes in thyroid levels.) My levels were extremely off and my thyroid wasn't making enough hormone. I immediately was terrified that my baby wasn't getting enough thyroid hormone which can, if untreated, lead to a miscarriage. I found all of this out while I was out of the country, so I had to wait until I got back to find a thyroid specialist. I was able to go in first thing Monday morning after getting home Saturday night. Needless to say, I was terrified and almost in tears, so scared that I had hurt my baby. I had no idea hypothyroidism was an issue during pregnancy and apparently sometimes it's not at all, but that wasn't the case for me. Thankfully I was able to find a wonderful specialist who sees me every month and tests my levels at each visit. She has been able to monitor my levels and make sure the baby is getting what it needs. I'm so thankful I was able to get it all under control before it caused any harm to my baby. That being said, having hypothyroidism during my pregnancy has been stressful and a constant battle because I have to get new medication almost each time I go in. The bigger the baby gets, the more thyroid hormone I need. It's a constant change and it can be overwhelming at times.
Specialist or General Practitioner? I get this question a lot, and I will give you my honest opinion on the matter. No I'm not an expert, so please don't take any of it as fact. My experience has been that both a specialist and a general practitioner have been useful and effective at different times in my life and my thyroid journey. When you are getting diagnosed and getting your thyroid under control and regulated, please see an endocrinologist. At that point, you need much more specialized care and increased attention given to your individual situation. A specialist is key to diagnosing and getting your thyroid levels stabilized. That being said, specialists are expensive and depending on your insurance, they can clean you out. My experience was that once you are at a point where your thyroid is consistent, a general practitioner can do simple blood tests and help you maintain your levels. They are also a much more cost effective solution if you aren't experiencing many changes with your thyroid levels. But if a special situation arises, such as pregnancy in my case, that could affect your thyroid, then going back to a specialist during that time is probably best. That may seem obvious, but unfortunately no one shared that with me until my levels were out of control. I have been and will continue to see my endocrinologist throughout the rest of my pregnancy and post-partum until my body and hormones get back to normal.
Advice: Wherever you go to, find a doctor that you feel comfortable with and that you trust. Don't be afraid to get opinions from multiple doctors to make sure it all lines up. Also, always ask for the numbers when you are given your blood results. A lot of doctors have a very broad range for "normal" and that may not always be the best indicator of healthy for you individually. Ask for the numbers and do some comparing to your other past results yourself. The biggest piece of advice I have is to trust your body. I can almost always tell when my thyroid levels are off. The longer you have hypo/hyperthyroidism, you will be able to tell when things just aren't right or when things are right. I can usually tell based on my weight, metabolism, and energy levels where I stand. If you feel like something is off, don't be afraid to say so! You know your body best.
