learning I have hypothyroidism…and thinking it was a joke

Today, on day 2 of my third miscarriage, I am happy to say things aren’t going too badly.  If there is one thing I hate to do, it is to just sit around and waste time.  I do not know if this miscarriage is really going all that better than the last two {pain wise} or because I knew what to expect ahead of time.  Either way, it is not hitting me as hard. 

Regardless of my current pain level, I could not lay on the couch for another moment longer, watching a single additional second of “Honey Boo Boo” without doing something a little productive first {actually, I am lying…I think that show is hilarious and could watch it 24/7}.  In any case, here I sit, typing out the beginning of my story.

I know in yesterday’s post I mentioned that I have been dealing with infertility issues for three years now.  I realized that wasn’t entirely correct.  In all reality, it all started in 2006 when I found out I had hypothyroidism.  It wasn’t until I started trying to get pregnant that I realized how much of an impact this thyroid “disease” was going to have on me.  Now, you will learn later on that having hypothyroidism isn’t the ONLY problem I have run into during this infertility journey, it was just the FIRST problem.

How did I find out I had hypothyroidism?  Well, you probably will not believe this, but I went in to see my doctor as I had been having strange period cycles {while even on the birth control pill}, I hadn’t gotten my period as I should have, and thought there was a chance I was pregnant!  My {now} husband and I had just graduated from college and were living together as we both started jobs, but we were definitely not to the point in our lives where we were ready to start a family.  Looking back at it now, I always wonder if a pregnancy would have gone differently back then or not.

In any case, along with the pregnancy test {which obviously came back negative}, my doctor also ordered standard TSH testing….I guess his thinking was that if I am not pregnant, why have my cycles been acting so funny and why am I so tired all of the time.  Well, his thinking was right {and really, that shouldn’t surprise anyone, he is a doctor}, it turns out the results showed that I could easily be diagnosed with hypothyroidism.

After the results were back, my doctor called to set-up a follow-up appointment along with some additional follow-up/confirmation testing.  It was at this appointment that my doctor informed me that based on my free T4 and TSH levels, I had something that was called “hypothyroidism”, and that I would need to take a dose of Synthroid daily, for the rest of my life, and do follow-up checks on my levels throughout my life as well {just to make sure the Synthroid dosage I was on was still allowing my thyroid to work correctly}.

I am not kidding when, at that moment, I asked him point blank if he was joking.  I had never heard of this “disease” before….so how could it be that all of a sudden I was being prescribed medicine, daily, for the rest of my life?  And how is that all of a sudden I had just developed this problem?  I honestly thought this was just some “preventive” type care he was asking me to do, that is was optional in a way, and was just a ploy to get me to purchase this medicine….almost like the doctor was prescribing me a daily vitamin…..that if I just forgot about it and moved on, life would just go on.  Boy, was I wrong.

To be honest, the next few months were a little bit of a blur as well.  But, before I explain why, let me give my very brief {and officially uneducated} understanding of some of the terms I have already used.  I will mention, for the last time now and forever, that I am NOT a doctor, I am only just sharing my own medical experiences.  Therefore, please do not forgo calling your REAL doctor based on anything you have read on my blog.

Okay, back to the task at hand…trying to understand all that is “hypothyroidism”.  When someone has hypothyroidism, it means that the thyroid is not producing enough of the thyroid stimulating hormone necessary for the gland to work properly…..the thyroid, therefore, is working too “slow”.  On the flip side, you can also be diagnosed with hyperthyroidism, which means the thyroid produces too much of the hormone {I do not know anything about being hyper, or the treatment, however}.

My current treatment for hypothyroidism is a daily dose of Synthroid.  I originally thought of Synthroid as a medicine….it is a pill, that is prescribed, so why wouldn’t I think that?  This was part of the reason for my initial confusion on being diagnosed with something that required daily medicine, for the rest of my life, at the ripe ol’ age of 22.  It turns out Synthroid is really just a synthetic form of the hormone that the body should be producing naturally.  I am just giving my body what it should be getting anyways in order to allow my thyroid to work correctly.

What is a thyroid?  Again, the thyroid is something I had never heard of in my life up until this point, so another reason I was so confused with what was going on.  However, I quickly learned the thyroid was a gland in your neck that is part of the endocrine system.  In my own personal experience, if my thyroid isn’t working correctly {and I am not getting enough Synthroid}, I can pretty much explain any symptom I am having on a “slow” thyroid.

How exactly did my doctor know I have hypothyroidism?  As simply as I can put it, he checked my TSH levels.  As long as your TSH level falls into what the medical world signals as “normal”, you know your body is receiving enough of the Thyroid Stimulating Hormone.  If I am not mistaken, the last time I talked to my doctor about what the normal range was, I was told it was anywhere from 0.33 to 4.5.  When I was first diagnosed with hypothyroidism, I was at an 8.4. 

One thing to note {that may be confusing going forward otherwise} is that when my TSH levels are HIGH, it means my thyroid is too SLOW {hypo} and I need a higher dose of Synthroid.

Now, the normal range of TSH noted above, was not relevant for me once I started trying to get pregnant this last time.  After the first two miscarriages, and seeing how my thyroid had sporadically acted {more on this to come}, my doctor decided it would be best if my levels were 2 or lower {but not below 0.33} when getting pregnant.

Why did I develop hypothyroidism?  I do not know and will never get a for sure answer.  This is the most frustrating part.  Of course my gut reaction was fear that there was something wrong with me that would eventually lead to something else being wrong and have it be something even more serious.

I have been told that hypothyroidism can be due to many different factors, and that even if we were to figure out exactly what caused the “permanent” disease of hypothyroidism, more than likely the treatment for what had been hanging out, just waiting around to give me hypothyroidism, would most likely be Synthroid or just regular monitoring. 

I have finally gotten to the point {very recently} where I am okay with not knowing what caused it.  My doctors have assured me we have done all of the testing to check for anything that would cause problems in addition to hypothyroidism….but this goes back to the time after being diagnosed as having been a blur.  So much testing got done, I just cannot claim to fully have a grasp on it to this day.  But, I have been seeing the same doctor since being diagnosed {and now the endocrinologist he works with} so he has all the background, knows what has been checked for, and has left me assured in at least this aspect of my life.

But, now that you have a bit of background on what hypothyroidism is {because I will mention it a lot}, I can finish this particular chapter of my story.

Like I mentioned above, the few months after I was officially diagnosed with hypothyroidism were a bit of a blur.  Because of my high TSH levels, among some other results, my doctor ordered a few additional tests on the thyroid gland itself.  What he was checking on was a nodule that they found had developed on the gland.  Nodules such as this one are not a normal growth to have on the thyroid, but as long as they are not “hot”, as it was explained to me, and that they do not grow, we can continue to simply treat my hypothyroidism with the Synthroid and leave the nodule be.

Therefore, plain and simply, the next few weeks/months were spent determining whether or not they thought my nodule was “hot” or “cold”.  If after ultrasounds on the thyroid gland, a barium test, and a few other test results came back and it was determined that this nodule was “hot”, they were going to have to do surgery to potentially remove my thyroid entirely as there was a good chance the nodule was cancerous.

So, by this point, in just a couple weeks time, I had learned I have this “disease” and that there is also an abnormal growth that might be cancerous.  Although the nodule ended up being “cold”, and it has not caused any issues since {it does get checked up on every once in a while}, this whole whirlwind of emotions that I had to go through definitely left me with a bad taste in my mouth in being “hypo”.

Even though the experiences I had to deal with at that time really have no immediate relation to my pregnancies and miscarriages over the past three years, being “hypo” in itself is definitely relative.  Some of the same unsure feelings {and then some} have resurfaced and I have been dealing with them ever since.

One thing I talked about yesterday was feeling embarrassment and that what I have gone through has labeled me as abnormal.  I am not going to sit here and say that I think a TON of people will go through the same {and entire} journey that I have, but each piece in itself will certainly be experience by many others and in no way should justify an abnormal label.  Having hypothyroidism while trying to get pregnant does not make me weird…I have just had to learn what the additional {necessary, non-multi-vitamin} care steps are.

I was given the statistic that there is an estimated 27 million Americans that have a thyroid disease (either hypo or hyper) and out of those 27 million, only about half of them are diagnosed.  So, as you can see, having hypothyroidism hasn’t made me abnormal and there is a good chance it wasn’t caused by anything I did, or have, that is abnormal….I just had to become an educated adult on it so that I can be treated for this “disease” properly, giving myself the best chance during a pregnancy {and really, to be healthy for the rest of my life}.