Thyroid Testing: The Basics and My Experience

I am not sure if I have mentioned this before, but I was born with an underactive thyroid (hypothyroidism). Basically this means a lifetime of blood tests and a little pill I take every single day. Except for me it hasn’t really been all that basic.

The normal blood test to check up on thyroid function is to test TSH. TSH is actually produced by the pituitary gland, but its purpose is to maintain stable amounts of the hormones T4 and T3 which are produced by the thyroid gland.   What this means, is if your body is producing a high level of TSH your thyroid isn’t performing as it should and your pituitary gland is working overtime to try to get your thyroid to step it up. In other words, as far as tests results go, high numbers are bad.

So why is the thyroid gland so important? Well and underactive thyroid leads to rapid weight gain, low energy levels/fatigue, the inability to lose weight, dry skin, constipation, hair loss, cold intolerance, and INFERTILITY. I will also note that an overactive thyroid is also a very serious condition with its own set of symptoms, but as I don’t have a lot of experience with that I am going to stick to what I know.

From what I recall most of my childhood my thyroid was well controlled with my medication. I went in for labs to check on things every six months and had a few minor changes in dosage here and there, but for the most part things were steady. And then puberty hit and things went completely haywire. As if going through puberty isn’t hard enough as it is, my thyroid levels were on a roller coaster ride. I started having to get tested every six weeks (which is how long they predict it takes for an adjusted medication level to take effect). My senior year my thyroid was under performing so drastically my doctor forced me to quit the track team (my energy was so low and body so out of whack I was passing out at practice). My junior year I made it to the state track meet in the half mile and even won a metal, and just a year later I could barely make it to the finish line.

My parents drug me to all sorts of specialists and they could not figure out what was going on. About six months later, just like that, everything was normal again. They were able to decrease my medication and I went back to labs every six months. Throughout my twenties things stayed fairly regular other than one issue when I was 25. Again, out of the blue, my TSH came back extremely high, and then a few months later everything normalized again.

When we started TTC 4 years ago I knew it was super important to keep my thyroid levels in check. There is a lot of controversy on what a normal TSH should be. According to my current primary care doctor the normal range is 0.34-4.82 ulU/ML. Thankfully my doctor and I are on the same page and she will increase my medication if my result comes back over 2.0.

Until a few months ago I was on a combined dose for about 6 months. I would take one dosage on the weekdays, and a slightly higher dosage on the weekends. While I am totally willing to do whatever I need to, this is a huge pain in the butt. The largest issue is with getting the 2 prescriptions filled. Because of how insurance works, I was regularly told that the second dosage wouldn’t be covered unless I picked them up on separate weeks. Going to the pharmacy every other week is really a pain, but of course I did it. I had labs done in April and it came back too high (4.2) so my doctor put me on just the higher dosage 7 days a week (whew!). Because my dosage has swung from the low normal to the high normal a few times over the past few years she also decided to do a thyroid antibody test to test for the autoimmune disease Hashimoto thyroiditis. I didn’t know all that much about autoimmune diseases until the past 2 years, and to my knowledge I have never been tested for this. In basic terms having this disorder means that your immune system attacks your thyroid gland as if it were an invader to your body (like an infection), which results in decreased function of your thyroid. My doc thought this might explain my varying TSH levels over the years.

I received my results from my labs this morning and it’s actually all good news. My antibody test came back normal so no autoimmune disease (YAY!), and my TSH is a perfect 1.01 which means I will continue to take one dose 7 days a week for six months or so until I retest early next year. If we decide we are going to go ahead with starting the IVF process in March I will request a retest from my doctor in February. Results are usually available in 24 hours and this will give time to adjust my medication if necessary before I actually do IVF.

Because I have been dealing with this disorder since birth it’s on my radar and I know how important it is to keep it closely monitored, especially while trying to have a baby. For anyone who has been TTC for 6 months or more and hasn’t had this test, I would highly recommend asking your primary care doc to order it for you. While I have had an underactive thyroid since birth, most people don’t actually develop this issue until later in life.   If you do get the TSH result back and it’s over the 2.5-3.0 range ask to be put on a low dose of synthroid (thyroid stimulating medication) and retested in six weeks. At the very least get the test, do your research, and talk to your doctor/RE.