The Battle, Part 1: Diagnosis

Over the last 8 years, I have struggled with my weight.  As a teenager, I could eat anything and everything I wanted, and I was a size 0 (actually I got down to a 00 at one point).  But around the time I turned 18, things started to change.  I started gaining weight, which most people, including my doctor, attributed to “The Freshman 15” but I probably gained a good 30lbs in one year.  However, I was living at home while going to college, so my diet relatively hadn’t changed— I wasn’t living on campus eating in the dining halls every day.  There were other changes that started happening at the same time too.  I started losing a lot of hair.  I would take a shower and clumps of hair would fall out (thank goodness I have a TON of hair).  I also started noticing the hair on my face was thickening and darkening (attractive, I know). I also was tired all the time, which again didn’t seem too big of a deal, I mean what teenager doesn’t like to sleep?!  

Then at 19, I stopped having my period. I knew I wasn’t pregnant (I did not have sex until I got married).  After 5 months without a period, I made an appointment with my family doctor, who sent me to have an ultrasound done and to see a gynecologist.  When the ultrasound results came in, the gynecologist, who was male and I had never had another appointment with before, told me I had PCOS (Polycystic Ovarian Syndrome).  He told me that I would never get pregnant without fertility treatments.  I was devastated! I have wanted kids as long as I could remember.  I accepted this diagnosis and went on birth control (as I was told by my doctor that was pretty much the only option) so I could start having regular periods again— by this time it had been over 7 months since I’d had my period.  Some of my symptoms did go away, including the loss of hair on my head and the thickening of hair on my face).  I even lost a little weight, but not much, and the fatigue did not get better at all.  As the years went by, I really believed there was something going on with my thyroid, especially based on research I’d done and people I had spoken with, but my thyroid levels kept coming back “normal” (there is a HUGE debate in the medical field about what is normal… I might delve into that another time) so my doctor kept saying nothing was wrong.

Flash forward 6 years… I am now almost 25 years old.  I am still exhausted all of the time and struggling with my weight.  I feel yucky all of the time. I can’t think of a better way to describe it but I just didn’t feel right.  I actually tried Metformin in a desperate attempt to lose weight, but it DESTROYED my stomach.  Ironically, I did lose weight, but that’s just because I wasn’t able to digest anything I ate lol.  I came off of that within two weeks because it made me so miserable.   Anyway, at Thanksgiving that year we had some friends join us for our family get-together.  The subject of thyroid issues came up while  talking to my friend, Sally, who recommended I go see her doctor.  Her “doctor” is actually a FNP (family nurse practitioner) but she focuses the whole picture, not just one symptom, and she is also very educated on thyroid issues.  I pretty much called her office the next day to set up an appointment!

It took a couple of weeks to get in, but I went in for my first appointment about a week before my 25th birthday.   I went in to my first visit hoping for the best, but expecting to be given the same small 15 minutes of time then be told again that I had PCOS.  However it was nothing like that.  I spent nearly 1.5 hours at the office, and I spent an hour of that just with the FNP alone!  She sat and talked to me about every symptom I had been having and how I came to be diagnosed with PCOS.  After about 45 minutes, she told me that she doesn’t believe I have PCOS.  Well, she said I have PCOS symptoms, but that she thinks there is a lot more going on than just PCOS.  She tells me she thinks I have a thyroid issue and she wants me to get bloodwork done.  I willingly oblige as I am getting hopeful we might have an answer.

Now comes the waiting part again… the bloodwork had to be run, which took over a week, then with Christmas and New Year’s, I finally get to go back in early January to find out my results.  When I went back for my follow-up, I spent another good hour with my FNP. She actually SHOWED me my bloodwork results, going through each test and result one-by-one, explaining what each one was, what the result was, and whether it was good or bad (to me this was a big deal because at most doctors’ offices you see the doctor all of 15 minutes, and they never show you what your results are or take time to really explain them).  She explained that my B12 and D3 levels were extremely deficient, which explained some of the fatigue I had been having.  Then she showed me my thyroid levels and said that they were “okay” but not really okay.  She said that though it showed normal right now, it probably fluctuates a lot.  Finally she showed me a test she ran for a specific antibody called antithyroid peroxidase (anti-TPO) antibody.  The antibody should only be within a range of 10-50.  Mine was 392!  She explained to me that my immune system was attacking my thyroid, a condition called Hashimoto’s Disease.   There is no cure for this autoimmune disorder, but there are ways to treat it.  One of the major ways is to reduce the gluten in my diet.  My body sees gluten as a poison, so it starts attacking it when I eat anything with it.  The antibodies are raised to fight off the gluten, but then they start attacking my thyroid because the hormones the thyroid produces look very similar to gluten (at least they look similar to these antibodies).  My FNP put me on a thyroid medication called Levoxyl (I can only use this specific brand-name medication because a lot of thyroid meds contain gluten– crazy right?!).  I also started taking 8000+ IUs of liquid Vitamin D3 per day, and 5000+ mg of  sublingual B12 (I think that’s right— I need to look) so that it would absorb directly in my bloodstream.  Note: I don’t still take this amount. This was just to get my levels back up to normal. 

So with this diagnosis has come relief and challenges of course.  I really struggle with cutting out gluten (what can I say, this Greek girl loves food!).  I will talk more on this in Part 2.  But I am happy to have an answer and the changes I am making have had positive results so far.  I am definitely feeling better overall than I have in years.

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6 comments

  1. I have been diagnosed with PCOS. I knew I had it before I was diagnosed, but my doctors keep checking for Thyroid problems because of my hair loss or fatigue, I am not sure why, but it has been checked several times in the last year. It always comes back fine. This post really opened my eyes! Thanks for sharing.

    1. I am sorry to hear you have PCOS too, but I am glad you have an answer! I am so glad you found this post helpful! That is my main goal in sharing this journey— to encourage others. It came seem very lonely when you struggle with diseases like these because you look “fine.”

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