When people find out that my children have congenital hypothyroidism, they often ask me how I found out. I explain that my children’s newborn screen results revealed that they had very high TSH levels. People often admit that they didn’t know there was mandatory newborn screening in the US, and that they didn’t know what tests were conducted as part of the newborn screen. I have to be honest that before my oldest son was diagnosed, I didn’t know about it either. I recalled that we consented to various tests and that his heel was pricked, but I couldn’t have told you what they were looking for at the time. 2013 marks the 50th year of newborn screening in the US. Screens are conducted for congenital hypothyroidism (CH) and … [Read more...]
My Journey
That is a picture of me climbing at Joshua Tree in CA. Climbing is something that both thrills me and terrifies me. Overcoming my fear of heights to be able to do climbs like that was quite a feat and quite the journey. Similarly, my journey with thyroid disease has been an adventure. I have shared a lot about how my children were diagnosed, but I haven’t talked much about my journey with thyroid disease. I’ve heard some people say that we should call it a disorder, but to me, it feels like disease is the right word. Lots of folks ask me what my symptoms were and what led to my diagnosis. The truth is I didn’t have any symptoms – at least none that I had really been paying attention to. I was in my twenties, and my husband and I were … [Read more...]
Read the Fine Print
Have you taken time to read the prescribing information (“PI”) for your thyroid hormone replacement medication? If not, you should. Because as Francis Bacon said: “Knowledge is power”. You can ask your pharmacist for the information (if it doesn’t come with your medication) or you can find it online here: http://www.rxabbvie.com/pdf/synthroid.pdf Recently, I spent some time reviewing the over 20 page PI for Synthroid (levothyroxine sodium tablets) and found many interesting things I wanted to share and discuss. Below I have highlighted the items that caught my attention. These are the things that interest me the most, but not a replacment for reading the PI for your medication and discussing it with your doctor. SOY AND … [Read more...]
“Of all the sly, subtle problems…”
“Of all the sly, subtle problems that can affect physical or mental health, none is more common than thyroid gland disturbance. And none is more readily and inexpensively corrected. Yet none is more often untreated and even unsuspected… One of the most common symptoms is fatigue. It can vary from relatively mild to severe. It may come on so slowly that a victim, feeling no sudden or precipitous decline in energy level, may come to accept fatigability as--for him--a virtually normal state. I have seen many children who suffered from repeated colds followed by complications such as tonsillitis, sinusitis, ear and mastoid infections, who needed repeated antibiotic treatment and went right on getting new infections until their … [Read more...]
Congenital Hypothyroidism: A Dad’s POV
I'm happy to introduce my husband, Mac, as my guest blogger today. I asked him to write about what things were like for him when our boys were infants and share his advice. Here's what he had to say: My wife aka Thyroid Mom asked me to write about what I have learned as the Dad of 2 children with Congenital Hypothyroidism. I hope it can help other Dads out there, or at least let them know they are not alone. First, let me start off by bragging because that's what we Dads have to do. That picture you see is of me holding my oldest son when he was an infant in the "football hold" as we call it in the US. It was his favorite way to be held, and I could always rock him to sleep this way. Isn't he a handsome baby? Okay, … [Read more...]
Test Anxiety
What is the optimal time of day to have your thyroid levels tested? Tests, tests and more tests! Sometimes I think I have test anxiety when it comes to thyroid hormone level testing. Ever wonder what time of day you should have your child’s thyroid levels tested? Well, I have! I asked our pediatric endocrinologist whether we should give our kids their Synthroid (Levothyroxine, etc.) on the mornings that we are going for blood draws or wait until after the draw to administer the medication and whether we should go in the morning or the afternoon. Our doctor said there are schools of thought that believe there could be an issue with getting an accurate picture of the thyroid hormone levels if the draw is performed within an hour of … [Read more...]
The Hyper-Hypo Roller Coaster
Fasten your seatbelts and prepare for the ride of your life! The first year of life with a child who has congenital hypothyroidism is quite the roller coaster ride. The first thing we heard was my son had a high TSH, and we needed to start medication. Then, the next blood test revealed that his TSH was still too high and we had to increase his dose. Soon after, the next results showed that he was severely hyperthyroid (his was TSH too low). This went on for the entire first year of his life – back and forth - always having to adjust his dose and then repeat blood draws. After the first year, though, he seemed to level off and we had many more results where his thyroid levels were in the normal range. When my second child was born … [Read more...]
The First Appointment – Pediatric Endocrinologist
If your child has congenital hypothyroidism, then you will probably be referred to a pediatric endocrinologist. The first few appointments my husband and I went to with my newborn son at the pediatric endocrinologist's office were not so great. My sweet boy hated riding in the car and screamed the entire way to the children's hospital located about 40 miles away (1 hour if you count driving and parking). We waited for over an hour to see the doctor. We didn't bring anything to write on and ran out of diapers. Truly brand new parents. We left feeling a little better about our son's condition, but in general, disappointed with the lack of information. Over time, we learned the tricks of the trade and … [Read more...]
Surviving Blood Draws
If you have a child that is diagnosed with a thyroid condition, be prepared for blood draws, particularly if they are born with congenital hypothyroidism. In the first few days/weeks, your child's doctor will probably want repeated blood draws to be sure that the surge in TSH isn't a newborn surge (sometimes it's so high it's clear that it isn't just a surge) and then once they start medication, they will check to be sure that the medication is working. As infants, my boys were checked every 2-4 weeks for a while. Surviving blood draws becomes crucial to everyone's sanity. Here are my best tips: Blood Draws with Infants 1) RELAX!!! Seriously - take a deep breath and relax. If you are uptight, then your baby will sense this and … [Read more...]
What is Congenital Hypothyroidism?
This is the question I get asked most frequently. Let me answer this and a few other common questions. This is just information I have collected over the years and not an official medical opinion. What is Congenital Hypothyroidism? Congenital basically just means you are born with it instead of acquiring it later in life. Hypothyroidism usually means an underactive thyroid gland (as opposed to hyperthyroidism which is an overactive thyroid). With children, it can mean that they are either born without a thyroid gland, they are born with an underdeveloped or misplaced thyroid gland, or they are born with a thyroid gland that just doesn't work as it should. For my kids, it's the latter - they have thyroid glands that seem normal, … [Read more...]