Thursday, September 23, 2010

Graves' Disease - Now What?

I have Graves' Disease.  I have officially been diagnosed with this Hyper-Thyroid Auto-Immune Disorder. What does that mean?  Well...I'm still not sure. Over the last few months I have been seeing a few different doctors who have had my blood drawn about every other week. Back in July, ultrasounds and radioactive uptake and Gamma Ray X-Rays were taken to check my Thyroid. 

Apparently I have a goiter which is one and a half times the size of a normal thyroid. I don't have bulging eyes but I do have eye sensitivities.  I have tremors and intolerance to heat.  I sweat profusely even when sitting still.  I'm moody and full of anxiety (of course, I've been that way my whole life).  I'm always hungry.  Rapid heart rate. I have hyperactivity...tehehe, I've always been hyper-active.  Really, I have always been this way.  Supposedly I'm supposed to get fatigued but I don't. I swear I'm the Energizer Bunny except instead of stopping I get sick so I'm forced to slow down. My doctors have been confused with the symptoms because I don't present like a true hyper-thyroid patient but my new Endocrinologist said blood work doesn't lie and my blood work is showing severe sky high levels of thyroid. 

The funny thing is that I went into the doctors office because I had increased swelling in my legs and feet which I assumed was from a Kidney Infection but the doctor said...no, it's your Thyroid.  Whatever!  The thyroid doesn't cause legs to swell or does it? I went to another doctor who said that yes, indeed, there was blood in my urine and I did have an infection so she treated the kidney infection but also said that I did have thyroid issues.  hmmmm....The first doctor was ready to give me a pill with no investigation.  She didn't even check for other symptom or a hidden illness.  The first doctor also wanted to ignore my kidneys.  I shouldn't be surprised since this doctor's office has mis-diagnosed another kidney infection which ended up hospitalizing me ten years ago while pregnant with my daughter.  Yeah.

For the last few years my other doctor has monitored my thyroid but never took action because the levels were within range but sometime after my Dad died, my body broke.  I had the shingles during the spring, then massive kidney infections and now my thyroid is breaking.  Actually, my thyroid didn't break...my body did.  My body is attacking the thyroid that is being produced.   My thyroid levels are insanely high yet my body isn't getting any of it.  So...what do I do?

My doctor told me that we can treat my Graves' but the internet says that it's not treatable.  We are going to start by me taking a couple pills every day.  The side affect are itchy bumps (yeah, because I need more of those) and possible liver failure and a few other side affects but since I don't plan on having any more children we don't have to worry about that.  Of course, can you imagine the toxins I'm now going to put in my body?  Apparently this thyroid issue is more serious than my liver working.  Yikes!  If this pill taking, which I'll be doing for quite awhile, doesn't work then I'll have radioiodine treatment but my doctor said that some people have taken two to three times for this treatment to work.  Finally, the complete removal of my thyroid.  The other part is will my auto-immune system still attack my thyroid even when we get the levels back under control?  My new doctor would not answer that.

My medical pet peeve:  Quit whispering about me when I'm sitting in the room with you.  Argh!  This is so frustrating.  Apparently, with my food allergies, there is something else they are considering about my condition.  Nice.

Like I wasn't an emotional basket-case before, now I have this to deal with.  Why can't I be healthy?  Why me?  Really!  Haven't I paid enough medical dysfunction dues?  How much more can I take?  How much more is going to be dealt to me?  I don't want to take a pill every day for the rest of my life.  I watched my father die taking pills every day.  Did it save him?  Why can't I be healthy?

Oh...as I read further about Graves', I see that mental issues, depression, mood swings, anxiety, bi-polar are all part of prognosis...Eye Disease too.  So...I have possible liver, mental and eye failure in my future.  Oh, Goody!

Oh, do you want to know the kicker?  I'm supposed to have a strong emotional support system.  Yeah, that's happening now isn't it?  Let me tell you about support systems....they DON'T WORK!  I was the anchor in my father's support system.  People, friends and family failed him.  They weren't there to watch him die, I was!  They weren't there when he was scared, I was!  They weren't there when he was spending months in ICU, I was!  Oh, they were there for the good times but not when he needed them. So how can I expect a support system for me when one of the most amazing people I've ever known couldn't keep one? 

Right now I can't handle snark, sarcasm, jealousy, anger or any sort of negativity.  I CAN'T HANDLE IT! I'm sick of pretending to be strong when I'm not.  I'm sick of trying to act like everything is ok, when it's not.  One year ago, next week, was the last time I watched my father drive.  It was the last time I saw him walking around on his own.  One year ago was the last time I saw him show strength.  After that, I became his strength.  I was the one holding his hand...I can't be strong all the time and you shouldn't expect me to be.

I'm supposed to be positive and I am for the most part but don't expect me to be on all the time.  I'm scared. 

So...that's what is happening with my health.  Yeah! Exciting, isn't it?

10 comments:

  1. Thinkin about you Andrea. The greatest strength a person can have is their own inner strength. You know you have it, you've shown it for your Dad. Love yourself as much as you love him. You're worth it.

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  2. Oh, dear. I don't know what to say. The internet can be a friend and a foe in these situations, as can the medical system. I wish there was something I could do. Thinking of you? Praying for you? Small comfort, I know. Prepare yourself for all the dumb things people say, "What doesn't kill you makes you stronger", "God never gives you more than you can handle", and "Special challenges are only given to special people"...these are the few of my faves when my babe had heart surgery. My mental response: "NOT HELPFUL!" So...I'll avoid all the trite comments and just say, hope you find something that helps/works/heals...

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  3. Dear Andrea, I am so sorry to hear this. You have to let your emotions out and I think it was courageous of you to be so honest publicly.

    I've dealt with many health issues of my own and my family's over the years and it's never easy. Just recently my daughter had her third open-heart surgery in her young life.

    Be pissed off, grieve, do what you have to to do to get it all out. When you're ready, try to find some support groups online which may help.

    You can always vent to your blog pals and we'll be there to help you through.

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  4. Dear Andrea,
    My thoughts are with you, I am so sorry to hear of your illness.
    xo
    Linda

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  5. Been offline all week and just had a chance to catch up on blog posts, thinking of you, it sounds rough. A big cross the pond hug x

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  6. Sorry to hear about your health news, must be quite a shock to the system. I don't know you and have only just started following your blog but it looks to me like you love animals so go outside and give your boys a big hug....they know and they understand when we are needing a bit of TLC and they give it unconditionally. Thanks goodness for blogland, I am constantly amazed at how the goodness of people comes thru. Take care :-)

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  7. Hi Andrea,

    I'm so sorry for all your going through both physically and emotionally. When reading your words, I felt your pain and I wish there was something I could do. I know it may not be the same as having people close to you, but we in the blogosphere care and support you.

    The other thing that came to mind when I was reading your post is that maybe it would help to also investigate alternative therapies. There was a time when I was told that I would have to take pills for the rest of my life and it was an alternative therapy that came to the rescue.

    I'm not suggesting anything crazy, but while your looking for answers, maybe look to more than one discipline. You never know. Sometimes it's a combination of things that helps.

    *Hugs* Jenn

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  8. the desiccated bovine thyroid is a completely non-prescription drug, which is known to bring in cent percent relief from an enlarged thyroid and hyperthyroidism; thereby, restoring the proper working of an overactive thyroid and bringing it back to normal.

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  9. Hi, my name is Liz, and I came across this posting while I was searching about my own health. Your story sounds very much like mine, I know that this was posted some time ago, but if you are still struggling with this and ever want to talk, feel free to contact me. I know that sounds crazy, but I was at the end of my rope, when I found a lady that was working at a gas station who had a similar health problem to mine, 2 hours of talking later, I actually felt better. My email is Ms.Liz_Pagel@yahoo.com, if you ever want to talk to someone that would understand:)

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