Thursday, October 29, 2009

Inquiring Minds Want to Know....

I know I haven't give a lot of details here about my illness. And I have had tons of emails and comments asking what the verdict is. So, I thought I'd just write a post illustrating the whole rundown, so every one's questions are answered.

I believe I was getting sick before I knew or felt I was sick. Last winter, sometime, I started feeling tired, lethargic. I forced myself to keep running/exercising, even though I was tired all the time. I thought I was just in a funk. After running the Ogden marathon, and then the Ragnar relay, I decided to seriously take it down a notch. Whenever I would run, I would run out of breath, and feel the need to stop and walk. (Just so you know, this is a big deal. Before this, I NEVER would stop to walk).

At first, I thought I was pregnant, or had gained too much weight over the winter (I'm not sure if this is related or not, but I had gained around 15 pounds in 1 month period in the fall.)

Sometime in the spring, I started getting sporadic shakes. Jitters, inner tremors. It would come and go. I didn't know what it was or where it came from.

In June, I had my IUD removed.

In July, I started feeling increasingly more tired, and started having more frequent bowel movements. Ok, ok, diarrhea. I'm not shy. Within 1 week, I had lost 10 pounds.

I just had this hunch. So, I went to the doctor, and told him I thought it was a hormone thing. He said it wouldn't have anything to do with the IUD, and said it was a virus. Gave me an anti-diarrhea medicine.

I then, went to another doctor, talked about hormone imbalance, and he prescribed me Prozac. After talking to my Mom about "feeling like a zombie on Prozac" so I chose to stop taking it.

Things worsened. By August I had lost 20 pounds. The diarrhea, exhaustion and tremors continued. The anti-diarrhea medicine made me throw up. I started to have trouble sleeping at night, which only aggravated everything else. My whole body itches and I developed a nasty rash.

My heart started pounding all the time. I had to stop exercising. This made me tired and depressed. I wore a heart monitor one day, and found that my resting heart rate was over 110, and trying to exercise sent it up over 200.

I googled causes of rapid heart rate. Somehow I stumbled across thyroid problems. Suddenly, all of my symptoms made sense.

I went to my gyno, and told him I thought it was my thyroid. He did a TSH test. 1 week later, I called asking for my results. They said my TSH was low, but he doesn't do thyroid so go back to my family doctor.

In the meantime, called my insurance to get specialists names. They wouldn't even give me names of doctors without a referral.

I found a different family doctor, who finally agreed to do all of the extensive tests. Blood work for my T3, and T4 levels, and ultrasound of my thyroid and a radioactive iodine uptake. Over 2 weeks after the tests, and not hearing anything. I called my doctor. And called and called, without any returned messages. I finally made an appointment, only to have him tell me that he wanted me to do these tests. I told him we already did them, and I'm here for the results. Waiting, waiting. He finally comes back saying I have a VERY prominent thyroid, my hormone levels are off the charts, and there are small nodules that could or could not be cancerous. The official diagnosis though, is severe hyperthyroidism.
So, let's get you into the endocrinologist.
The nurse called and made an appointment for me. I have to wait another 3 weeks, thinking, worrying if I have cancer. And by now, I have lost 35 pounds.
I know I looked sickly, but I went to church, and suddenly everyone started bringing me dinner and stuff.

Finally, last Tuesday, the 20th, I went to the endocrinologist. They don't have my test results, my family doctor didn't fax them, like they said they would. I'm frustrated. They call and get the results while I wait. I'm liking this office.
The doctor walks in, introduced himself, and then pronounces that I have Grave's disease. This is new. I've never heard it before. He explains that it's an autoimmune disease which causes the immune system to attach it's own body, and which affects the pituitary gland, and caused my hyperthyroidism and all of my symptoms.

He then says that my nodules are small and aren't cancerous, and that I don't need surgery. I may possible need radiation, but there's a new anti-thyroid medication. I jump on that, the worst that could happen is that it doesn't work, but it's worth a shot. He then explains in detail everything I need to watch for and what to expect.

So, I have Grave's disease, and I'm taking a pill that's supposed to make it all better. My doc called last Monday to up my dosage from 2 pills a day to 6 pills a day. I'm not 100% but I'm feeling a little bit better. I got back in 6 weeks to get more blood work, and see if it's working.

So, there you have it.

34 comments:

2busy said...

Holy cow! What a scary thing you have been going through. Hopefully this all works out for you!

Annette Lyon said...

Let's hear it for a doctor who finally had a clue and pill that (I hope) will make you feel better.

And now I must Google Grave's disease.

Alyson (New England Living) said...

I'm so glad you have your answer and I hope you continue to stregthen and get healthy!

I went through something similar recently and it was extremely frustrating. So, I totally understand how you must have felt.

kado! said...

i have heard of Graves disease...i'm glad you finally have an answer to what has been bothering you! good luck on the medication...i hope it helps you feel better!

Shauna said...

Oh Sher! Thank you so much for sharing! I am for sure keeping you in my prayers and want you to know you are loved very much! Please keep me posted on how you are doing.

wonder woman said...

I'm just so glad you're finally somewhere with a diagnosis and treatment plan. I really really hope it all gets better.

Thanks for the heads up.

DeNae said...

Gosh, and only a year to figure it all out. Damn doctors. I sincerely hope you are on your way to finally feeling better.

And like Annette, I'm off to Google-land!

Sarah said...

I am so sorry you have had to go through all of this. You need to do something to get your mind off of all this stress. Might I suggest a girls night out? MCat wants to get together for lunch or something. Let me know when you are available will you? As always if there is anything you need you know where I am!

Janice said...

I went through a similar thing about 8 years ago. I understand doctors telling you there is nothing wrong with you, it is "all in your head" etc. After being tested for MS twice, it was determined that I have chronic migraines.

I so feel for you and glad you finally got an answer.

Rebecca said...

What a physical/emotional nightmare! Hopefully it's coming to an end for you.

Vanessa said...

Glad they figured it out! Hope you are back up and running soon!

Erin said...

I am so glad you finally got an answer. I hope the pills help you feel normal again!

Cynthia said...

I'm glad you have a solid answer. I hope the little pills work their magic and you can get yourself back!

Rachel Sue said...

I'm glad you finally got a doctor to listen to you! Knowing is half the battle. I hope things continue to get better for you.

Hilary said...

Wow, that does all make sense with hyperthyroid. Phewsh! It'll take a while for things to stabilize though, expect that!

Teri said...

I'm glad you got some answers. Sometimes doctors frustrate me to no end. GRRRR. Let's hope you get some relief and start feeling better soon!!!!!

Terresa said...

I've never heard of Grave's disease before. I'm glad you got to the bottom of it. Hopefully those pills will do their work!! Hugs to you!! You are brave & have all of us bloggers behind you. You can get through this!!

Love Fam said...

So glad you got to the bottom of it!! Hope you start feeling better!

Sherrie said...

I truly am sorry for all the troubles you have been through dealing with doctors and insurance. I am glad you finally have a diagnosis and a treatment plan. I will be praying for you.

The Garden of Egan said...

So glad that you finally have some answers! Your symptoms sounded so like what was going on. Hope you get feeling better soon.
Since I'm not a neighbor or ward member I'll send you some cyber chicken soup.
Hugs

debilyn said...

what an ordeal, sher!
although i know you still have tough times ahead, i'm glad to hear you finally received some answers. sometimes the not knowing is the worst part.

i have a sister who's been going through a similar experience, only they "suspect" it could be MS. all signs point to it, but the road to getting an actual diagnosis is full of twist, turns, and detours. we just keep praying that something will give soon so that treatment for whatever it is can begin.

keeping you in my thoughts and prayers...

Motherboard said...

Amen and amen to what everyone else has said!

H&H!!

Peggy said...

I'm glad to know you finally have an answer and that your disease is manageable. I really hope that something works for you and that you can feel better again.

Becca said...

I'm so glad that you finally have some answers--and better yet, a doctor that actually listens to you! I have been thinking about you and wondering how you are doing and this post just made my night! Here's hoping that your new found knowledge will bring you power!

Mikki said...

Thanks for sharing all this Sher! I'm so glad you're on top of things enough to keep after these doctors. I'm glad you were able to finally get an answer and I hope the meds work.
Keep it up, don't let them slack off now either!

AS Amber said...

Love your guts! So glad you're on your way to feeling better!

H&H

M-Cat said...

Oh.My.Hell! I can't imagine the roller coaster that you have been on. Ridiculous.

Bottom line, you have an answer. Once you have an answer you can start to do something about it.

Grave's is no little thing, but it's dealable from what I understand.

Did you know Bob Welti has had it for many, many, many years? (just a bit of trivia)

Anyhoo, I am hoping you start to feel better and I sending hugs and love

xoxoxox

Jami said...

Holy Moly! What a journey. I'm so glad you found a doctor who is persistent. And glad there's something to do about the condition. I hope the pills get you up to 100% again.

Chad and Tenaya said...

Well finally, dang doctors. Can't they get their act together and actually do their job. Most of them make enough money to at least do a bit of their job (sorry, I'm a little bugged with doctors right now).

I am so happy to hear that you have figured out what is going on. I hope you start feeling back to 100% soon.

wendy said...

Well, I guess KNOWING probably gives you some comfort eh.
Graves disease eh ---wow, never heard of it.
I sincerely hope things start to get back to normal for you Sher.
It certainly makes us aware of how important good health is.

And don't worry about people who say you have small nodules (they have training bra's for that)

Natalie said...

what a journey. I hope things get better from here.

LITTLE MISS said...

What an ordeal Sherrie!! I'm glad you kept at it though. I have a friend with Grave's Disease too (which is why I was wondering about your thyroid a while back)... such an elementary test could have been done long ago-- when you ASKED for it the first time. Doctors aren't gods, but they certainly hold all the power. I'm proud of you for taking charge of your health and seeking answers, despite they way you were blown off again and again. [I am going through a similar (but mild) situation and finding a doctor that will actually LISTEN is becoming increasingly difficult.] But YAY for answers-- at least now you can start working on a solution ; D

((HUGS))

Elizabeth said...

Thank you so much for sharing. I'm so glad you were persistent--sometimes you really have to push to get what you need. Keep us updated, I'm hoping for the best for you. :)

Nick and Stacey said...

My goodness that is crazy! Hopefully in a few weeks everything is on the up and up! Sounds frustrating though!