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 5th, 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.
