Under-active Thyroid

It has been going on 9 years since I was diagnosed with an under-active thyroid, and every time I go to a doctor, for any reason, I still get nervous, anxious, and crippled with worry.  Even if there is nothing wrong, or I am going for something routine.  Blood tests, check ups, going for something unrelated like a cough or sinus infection- anything- and I get all worked up.  To the untrained eye it looks like, why?  It’s nothing serious, thyroid conditions are common, doctors are helpful, etc.  But for me, it is more then that.  I think I was, for lack of a better word, traumatized a little back when this was first diagnosed, and now every time I worry that something scary will happen again.

But first, I would like to tell you what an under active thyroid does.  Most commonly it involves weight gain, fatigue, low mood, and feeling tired.  The most common reaction I get is usually along the lines of, “I think I might have that too”.  Why?  Well because the biggest complaints among the Western world, especially women, are wanting to lose weight, have more energy, etc., especially for busy people who work long hours, get little sleep, have a family to care for, and the like.  Well, for me, it is so much more then feeling just tired.  When I am low or feel like I need a medication increase, I usually gain weight, and I am not talking like 5lbs, I have in the past gained as much as 20 pounds in less then a month.  For no reason.  As a young women entering adulthood, that sucks.  I was even skating about 4 days a week for a good 2 hours each time, it is not like I was lazing around, although the fatigue wanted me to.  Most recently, other then a bit of weight gain, was the extreme fatigue.  Getting 10 hours of sleep a night was not cutting it.  My brain was foggy all the time, it took everything out of me just to function for the day and stay awake, I was overwhelmed and stressed out easily, and by mid afternoon I was so tired I couldn’t stay awake.  Yes, sometimes in life an afternoon nap sounds great!  Especially during hectic times.  But this was all consuming.  If someone asked me a question, trying to respond was too taxing.  I felt like I couldn’t control it, and sleep was coming for me.  My eyes were heavy, my brain was foggy, I had no energy, and therefore despite my hugest efforts, I could no longer fight it at this point.  Extreme lethargy is the best way to describe it, but even that doesn’t quite hit the nail on the head.  And to the world, I just look like a lazy bones taking a nap, but really, I am trying with all my might to stay awake.  I tried to take advantage of being in the car and would take a little nap then, or if I am home alone I would sleep for a bit so my life would experience as little interference as possible.  Because in the end, wherever I was, I would sleep.  At this point, falling asleep is beyond my control.  On the bus, subway, in the car, at home, when I was in school- during class, on the couch, in bed, sitting up, etc.  This is just the main way it affects me.  Other things that have occurred include, thinning of my hair (all over my body, especially my eyebrows), constipation, low appetite, low moods, brittle hair (on my head), puffy face, among others.  I take medication daily for hypothyroidism, which relieves most of these symptoms if I am on the right dosage.  Occasionally I need an increase, which is usually accompanied by these symptoms to various degrees, and then after awhile on the new dosage, I feel better.  But one thing that has never left me, is my need for sleep.  Less then 8 hours- forget it.  A good 8 hours allows me to function, but 9 allows me to function, feel alert, feel refreshed, and consciously be present and enjoy my day.  I can cope with less then 8 hours once in awhile, but it can’t be a regular thing.  It is a physical need for my body’s conditions.

So going back about 9 years, I was 15 years old and going in to see the doctor about my knee.  He asks questions, doesn’t seem too worried, but runs some bloodwork anyways.  Well it turns out, he found some hormones that were quite out of whack.  My free T4 was extremely low, and my TSH was, literally, off the charts.  The lab stopped counting at 600.  The normal range is 0.5-5.0, I think.  Something like that anyways, which pointed to a hefty case of hypothyroidism.  So he ordered a “semi-urgent” MRI of my head to look at my pituitary gland.  I went to the appointment a few weeks later, got the MRI, and they told us it would be a few weeks to get the results.  So we asked where the nearest walk-in clinic was because I had a nasty chest cold, they directed us, and my mom and I went.  When we got there and I handed them my health card, they told me my doctor was looking for me, and to call him right away.  It turns out, they looked at my MRI images right away, found something, called my doctor, and told him we were planning on going to a walk-in clinic.  He, in turn, called every clinic in the area asking them to watch for me to come in.  So my mom was on the phone with him, crying, and dragging me back to the car.  The doctor told me I had a pituitary adenoma, and arranged for me to see a neurologist immediately at Sick Kids Hospital in Toronto.  We hopped in the car and drove.  As a kid, if I was ever scared, I knew it would be ok if my mom told me not to worry, or went into my scary dark closet to check for monsters, and appeared calm.  But she was crying, and exploding with worry all over.  Hence, I was freaked right out.  You know it’s bad if your mom is scared.  The neurologist, and my family doctor, were concerned about my peripheral vision because my pituitary was so enlarged it was pressing on my optic nerves.  But nothing.  To their astonishment, my vision was, and still is, normal.  He referred me to an endocrinologist, and ordered another MRI in 3 months time.  Meanwhile, I returned to see the endocrinologist.  She put me on medication, which is essentially synthetic thyroid hormones.  She started me on a low dose, and increased it slowly over several months to avoid “shocking” my body with such a high dose.  I went for the next MRI and to everyone’s amazement, everything was normal.  The neurologist discharged me, saying he thought that it was mainly a thyroid issue, and I had follow up eye exams for a little while afterwards.  They expected it to take a long time, but in a very short time, my images were normal.  They continued increasing my medication slowly for about 2-2.5 years and I had found a comfortable dose, when I was about 17.  Then when I was 20, I needed an increase, again when I was 23, and now again at 24.

So now, after that initial whirlwind, being terrified, I think it affects my appointments now.  I went to the doctor to get my knee looked at and I was sent immediately to a hospital to see a neurologist because of a pituitary adenoma?!  So when I see a doctor for a chest cough, routine bloodwork to get my levels checked, a physical, anything, you can see why I get a little anxious.  Who knows what they will stumble upon.  And at the time, I didn’t think anything was wrong.  Symptoms don’t come overnight, they gradually take over your body, and from a day-to-day perspective, you don’t notice changes.  But looking back, I had lots of gradual symptoms.  I was 15 years old, with no signs of puberty whatsoever, I was less then 5 feet tall, I was very chubby, had a puffy face, pale skin, no hair on my arms, thinning eyebrows, 24/7 lethargy, brain fog, no energy or ambition, constipation, no appetite, and other things that are probably a little too descriptive for this blog.  But feel free to ask me if we are Facebook friends 🙂  It is like being on autopilot, and when my medication gets adjusted, I feel like I come back to life, haha 😛

Now recently at my last doctor’s appointment, I got a physical with the nurse practitioner, and bloodwork done.  My free T4, which is my thyroid levels, were normal, but my TSH, which is what stimulates the thyroid gland to produce hormone, was high, at 29.  So if one has hypothyroidism, TSH is high and free T4 is low, because the TSH is working hard telling your thyroid gland to produce, but it is not.  She said that TSH can still be high when thyroid is normal, but it does need to be brought down, so she increased my medication.  Initially she wanted a 6 week follow up blood test and a referral to an endocrinologist, because my TSH was even higher then my previous test.  I was freaked right out.  I had been discharged from my endocrinologist when I was around 17, because I was under control and could continue care with my family doctor.  And now I needed to see one again?!  Yikes!  Obviously something is wrong if I am producing too much TSH when my free T4 is normal.  But, she had misread something, and the blood test and medication increase that she thought was just 3 months ago, was actually 1 year and 3 months ago.  So the TSH increase was over the course of a year, and not just a couple months was fine, and normal.  She was only concerned because she thought I had a medication increase due to high TSH 3 months ago, and my levels got even higher instead of staying the same or lowering.  So I now take 137mcg.  She told me what to look for in case it is too much, and I get a follow up bloodwork check in December, provided I don’t have any big symptoms that it is too much for me.  I have been taking it how for a bit less then a month, and my days of experiencing that mid afternoon crazy lethargy are now few and far in between.  So, hopefully, this new dosage is all I need, and the blood test in December will at least show improvement.  But I know too much for my own good.  I can’t help but think why is my pituitary producing TSH if my thyroid is normal, and doesn’t “need” it?  Or what if my free T4 gets to high from this dosage, but my TSH improves, then what?  Oh the scary thoughts that run through my head.  I try hard not to “google” it, because that will just make it worse.  There is a lot of stuff out there that isn’t necessarily true, or reliable information.

But to make it all better, I have my Artist.  He is extremely supportive, and drops everything if I get worried or upset or anxious around this stuff.  He is so comforting, I am such a lucky girl to have such a great husband.  He knows exactly how to calm me down, because in reality, I am not worried about some”thing”, but rather, what “could happen”.  So he brings me back to Earth, somehow, and soothes me.  “One step at a time, no matter what, we will figure it out.”  “If that is what your body needs, then it’s fine, everybody is different.”  And he always brings me back by re-telling me my own thoughts; life is precious, take advantage of your time, lets do something fun together instead, and if something happens, we will figure it out when the time comes.  And of course, our mantra that we always say, “No matter what, we always have each other.”  When one of us is stressed, worried, frustrated, etc. we say “no matter what….” prompting the other, upset one, to say “…we always have each other”.

And it is the truth.

No matter what.

That is all I need.

P.S.  The Artist always cheers me up, he is so hilarious, and can get a laugh out of me anywhere, anytime,  Literally.  One time he was in the shower, and I was sick, so I bursted into the bathroom and threw up in the toilet, and while I was vomiting, he said something that made me laugh 🙂  Haha.  Currently, he has been having really bad allergies, and uses this as a trick to torment me 😉  He plays the “sick” role, and when I bring him something, what I think is a hug or snuggle, is really a trap to tickle me (I am extremely ticklish) or pull a prank of some sort.  And it makes me laugh, sometimes to tears 🙂  I am so much less stressed then I used to be, and can handle things so much better now.  Thank you, my Artist, for teaching me.

Happiness is contagious.


*Note:  This is my personal experience, and how a low thyroid affects me personally.  Everyone has different experiences, to varying degrees.


2 thoughts on “Under-active Thyroid

  1. You are a very strong person Emily, and have been through a lot. It is so good the artist is such a great support for you through the difficult days. Lynne has started a very much lower dose of medication for low thyroid about 2 years ago, that came out of a routine blood test from a doctors visit. You mentioned on one of my Old Fellow posts of you being anxious about seeing doctors, and totally understand why now.
    Do take care Emily!!

    • There have been times where it is a struggle, and times when I feel good. So far, no crazy symptoms of it being too much and it has been about a month on the new dose. I am nervous that my TSH won’t come down, or my thyroid will spike up even if I don’t feel symptomatic, because “then what?” But I try to stay positive. There were some other abnormalities on my last routine physical that I have to see a specialist for too, but catching things early is always important! As well as taking care of oneself and being aware. Thanks for the kind words, Carl.

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