An Update...A HONEST Update

AN UPDATE!  Warning….it is a long one….

I have been wanting to write this all week, but have been struggling with it.  But I finally decided that I might as well put it all out there.  I went to see my Endocrinologist on Monday, and she didn’t tell me what I wanted to hear. (I hate it when doctors do that…)  

As most of you know, I have been dealing with thyroid issues since August.  Here is a recap for those new to the blog….I went to see my PCP back in August ’11 due to a large “growth” in my thyroid area.  Basically, to give you a visual, it looked like I had a large, off-centered Adams apple.  It had kind of grown over time, and because it grew fairly slowly, I hadn’t really noticed it.  (When I finally did get in to an Endo, his first question after looking at my labs was “Haven’t you been extremely tired?!?!”  My answer was, “Yes, I am a full-time, working, mother of 2.  Of course I am extremely tired!!”)  Anyway, My PCP quickly told me I was way out of his realm of expertise, and needed to see an Endocrinologist right away.  Now, I don’t know if any of you have ever tried to get into an Endo in San Antonio, but GOOD LUCK!  After almost a month of my PCP calling in referrals, I took matters into my own hands, and ended up getting in with a guy in San Marcos.  Long story short, I had hyperthyroidism.  But none of my blood work or scans showed cancer, so that was a relief.  The meds he put me on to get my thyroid levels down worked great on paper, but the size of the growth just kept growing.  So he decided that surgery was imminent.  We finally got my levels where they needed to be, and I had surgery on Dec. 28, 2011.  I actually ended up having 2 separate growths, and they did what they call a near-total thyroidectomy – meaning they took all of my thyroid out, except a few pieces of tissue.  I was healing up great, and recovery was going good, and then I got the call I wasn’t expecting at all….on January 5^th, 2012, I get the call that pathology had discovered that the growths were in face cancerous.  So, I had to go thru Radiation treatment to “zap” the remaining thyroid tissue, to get any remaining cancer cells. (this wasn’t a fun process, leading up to or recovering from)  After this, we were able to start taking Synthroid (I was taking the generic kind though...keep in mind, in all previous posts prior to this one, when I said Synthroid, I was meaning generic Synthroid...this will be important later in this update...) to give me all the stuff I was missing from not having a thyroid anymore.  I was told that within 6 months or so, I should be feeling a lot better.  

Well, that was in late January.  It is now mid-October.  And not only am I not feeling better, some days I am feeling worse.  The worst I have ever felt on some days.  I finally got into a new Endo in August.  (The one I wanted to get into from the very beginning but she had a 3+ month waiting list)  She is amazing.  I really like her.  I FINALLY feel like someone is listening to me AND understands what I am going thru and what I am saying.  

The fact of the matter is many Endos try to treat all thyroid patients the same.  Patients are either hyper or hypo, give them meds and send them home.  However, when someone doesn’t have a thyroid at all, you can’t treat them like that, there are other things that come into play.  And when she finally explained this to me back in August, I thought, finally….we are on the right path. 

But I haven’t been FEELING like we were on the right path.  And it was shown to me, on paper, this week that I am not crazy in feeling that way.  Evidently there are about 5% of people in the world that take the generic Synthroid that it DOES NOT WORK ON!  And evidently….I am one of those 5%.  So the last 9 months of upping my dosage, trying to get me back to feeling somewhat normal, have all been for nothing. 

SO….Plan A to fix this….I am now only to take Brand Name Synthroid (ie: more expensive).  We will do this for now (along with the other supplements she put me on back in August) and see where we are Mid-December.  If this isn’t working, there is a Plan B in place, but I REALLY don’t know how I feel about it, so please pray Plan A works.  (Don’t really want to go into Plan B at this time…need to do my own research on it before I hear everyone else’s thoughts…. J)

Here is the thing….if you have seen me in the past 9 months, you probably had no idea I was feeling bad.  This is why I started not to post anything about this at all.  One downfall I have, I guess it’s a downfall anyway, is I put up a good front.  I can put on a mask in front of the world, and no one will know what is going on inside.  This has been damaging to me many times in the past, but I still do it, and I don’t know why.  So I figured I would let you all know some of the things I have been suffering with.  In no particular order….

·         Tired.  Always tired.  If I am doing something (going out with friends, planning an event, focusing on a project with the kids) I do ok.  But the day to day gets to me.  I seriously do not truly sit down in the evenings until the kids are in bed, because I know as soon as I do, I will be asleep too.  It is so frustrating.  To me.  To Steve.  To my kids.  I can't tell you the last time I stayed awake thru a movie.  Or stayed awake, waiting for Steve to get home or finish working on something so that we can talk.  Or stayed awake while riding in the car for any considerable distance.  This is probably one of the hardest parts.

·         Depression.  I am usually a pretty happy person.  So this has been another big obstacle for me.  There are days that I don’t want to get out of bed.  And a lot of days, if it weren’t for those two precious girls, I don’t know that I would.  I have stopped caring about a lot of things that used to mean so much to me.  And I hate it, because I see myself doing it, and I can't do anything about it. 

·         Mood swings.  I hate this.  SO much.  I have snapped at my husband and my kids more times than I can count.  And I hate it.  Steve understands it, to some degree.  But my sweet girls don’t.  And I feel so bad for them.  I have really been trying to control this.  I have also noticed it affecting other relationships as well.  I am so sorry if I have said anything hurtful to you recently. 

·         Weight gain.  All I can do here is try to be smart and careful.  But seeing it slowly happen and clothes not fitting sure doesn’t help my self-esteem very much.

·         Hair shedding.  And I have always shed pretty bad.  But this is BAD.  That is why I originally opted for the pixie cut, and why I will be keeping it short for a while.

·         Cold.  I am pretty much cold all the time.  On the rare occasion I am not cold, I am burning up.  Hormones are a lovely thing.

·         Inability to focus.  This affects me at my job more than any place else.  And unfortunately right now, my placement in the office provides a lot of distraction, making this even more rough.  But I am trying my hardest to make do.

·         Memory/absent mindedness.  I have always had a good memory.  Now, not so much.  I have forgotten some pretty important things here lately.  I think I need to start carrying around one of those big daily planners.  Lol

Those are the main things.  There are other aspects of my life that have been effected, but those are the main ones.

Now, like I said, many people probably don’t realize all of this is going on.  That’s because I don’t want people to feel sorry for me.  I don’t want people to think I am making excuses.  I don’t want to be looked at any differently than before.  But, the short journey back to normalcy isn’t going to happen like I thought, so I have to make people aware.  If I seem down, just smile and give me a hug.  If I seem tired, don’t make a joke about me being up too late.  If I bite your head off about something, just ignore me.  J  Seriously though, people have been asking me how I have been doing, and I haven’t been honest.  So I figured now was a good time to start.  

So there you have it.  An update.  I will keep you all posted as to how the medication switch works out, and how the appointments in December go. 

Thank you all for your continued prayers.