Update

A few people have asked how things are going. If I am feeling better. If I think the medicine is working. If it is helping. 


The short answer is no. 


The problem changes from day to day. 

Some days I have terrible breakouts. 

Others, I am sick and tired. Or sick, but not tired. Or not sick, but so very tired. 

Some days I have shooting pain behind my eye. Others, the pain is in my entire head and neck and shoulders. 

Some days I feel like the act of breathing will make me vomit. I try to hold my breath. Pretend I don't need air. Try to convince myself that the motion of taking in air and then expelling it like any normal person won't make me physically ill. Like my stomach doesn't feel like it is revolting. 

Some days, my body just hurts. 

I am exhausted, but I can't sleep.

If I am hungry, I am all too aware that eating just gives my stomach something to expel. 

But most days, I'm not hungry. 

I struggle to consume enough calories each day. I resort to eating something nutritionally terrible, so that I can be done with eating. 

I keep reading all the things that people with autoimmune diseases say they can't eat anymore and I wonder what on earth they do eat.

Go gluten free. Don't consume sugar. or dairy. or eggs. or carbs. or fats. or blah blah blah. The highly recommended diet is Paleo. However, one of their main sources of food is eggs... So there ya go.

The thought of all of the work that goes into what I should and should not, can and cannot eat make me want to just be fed intravenously. The whole joy of eating, of savoring food has been ripped away. 

I am tired. I don't understand how people live this way all the time. 

I don't understand why I have to live this way from now on. 

I can't wait to get back to the Endo's office so that I can rip into him with my million and one questions. Make up for lost time. That time he should have spent with me when he diagnosed me... in his office, not in a letter. Reassuring me and answering any questions that I might have. 

It is hard for people to understand all of this about me. When you look at me, I don't appear ill. I haven't had a stroke or broken a leg or had any lengthy stay in a hospital. In fact, long ago, when this illness wasn't yet understood, people who had it were sent to asylums. It is often thought that it is all in our head. As long as it took me to get a doctor to listen to me, I can understand why people began to think they were crazy. If you know anyone with something "invisible", be it Grave's or Fibromyalgia, or Hashimoto's or anything to do with autoimmune illness, please don't assume that because you can't see it, they can't feel it. That is something I never truly understood until now. 

Thank you for staying with me through my ramblings. Please let me know if you have a question. 

Snail Mail

"To whom it may concern, 

You have hyperthyroidism likely from Grave's Disease... I will start you on thyroid blocking medication.

Sincerely,"
(blah, blah big wig doctor)


Yes, you read that correctly. That is how I was diagnosed. 

I finally found a doctor qualified to speak to me about this issue. It took years of looking for just one doctor that would listen, fighting for tests, and giving a mind numbing amount of blood. The doctor that I found chose to notify me of my condition via snail mail. How cold.

He didn't call me into his office to tell me the news that I already knew. He didn't give me the opportunity to discuss treatment, ask questions, and give my input on how I would like to proceed with my life.  He basically told me to put a bandaid on it. 

"Dear patient who is just a number, 
You have an illness that has caused another illness. I have decided that you will live this way from now on. Your input is not necessary." 


I am trying to find comfort in finally getting a diagnosis. I am trying to not feel shoved aside. Just a number. So insignificant that a simple two line letter in the mail will suffice. 

I've got my little angel on my shoulder telling me that this is just one more step in the right direction. This is a small victory. To be strong. To have hope. 

I filled the prescription.  Not because agree with this method of treatment. 

I filled the prescription because my symptoms are getting worse. 
I find myself exhausted when I should be awake and awake when I should be exhausted.
I find myself shaking while trying to cut strawberries for my children's lunch. 
I find myself hugging the toilet a lot more that I'd like to admit. 
This very evening, I found myself rushing out of our small group at church and praying that I'd make it to the bathroom in time.  And pleading with my body to not fail me in public. It did.

The endocrinologist sent my labs attached to the two line notification. Of course I don't speak lab test, so it has taken me a while to decipher it. 

Today, it clicked and I understood. My numbers at not just bad, they are very bad. 

No wonder I am so tired and sore and sick. 

I will take the pill for now. 

However, I expect a face to face with the Endocrinologist very soon. I hope that we regain some lost ground, some trust that was lost. I know I have the strength to get the answers. I hope he has the strength to deal with me when I put my foot down. I can be pretty hard headed. 

I want to ask him why we are treating a symptom of my disease. 

If you had migraines, would you be happy with the doctor prescribing Zofran so that you aren't as nauseous? Or would you prefer to discuss fixing the migraines? 

It's common sense, right? Why haven't we discussed treating Grave's Disease? Why are we trying to kill my thyroid instead? If there is no way to treat Grave's, it would be helpful to know that. I couldn't tell you if that is an option, we haven't discussed it. 

I am strong. I am determined. I am still up for this fight. 

On the uptake

Why is it that every doctor you see wants to run tests to confirm that the test he has in his hand, that the previous doctor administered, is in fact correct?

Story of my life. 

Last week, a very good friend of mine dropped in, bearing gifts, to check on me. She found out that I hadn't had my appointment with the Endocrinologist yet, so she moved her schedule around and went with me. I am so glad that she did. 

It astounds me how differently we, as humans, perceive information. 

The Endo asked a series of questions. He then told me I may not actually have Grave's disease, that we are here to figure that out. Even though he acknowledged that my numbers were all pointing in that direction. We needed to run more tests. He told me that if the test says one thing, he will never see me again. If it said the other thing (which every test has said so far) then we will have more tests to run and, eventually, I will get onto some medicine. 

I was so frustrated with this answer. I felt like this is ground that we've already covered. Why are we backtracking? Also, if this is nothing, why is it that you squeezed me in with less than a week's notice when you have a 6 month waiting list?  It just didn't make sense to me. 

Bless my friend. She was able to see this in such a positive light that I had to stop my grumbling long enough to consider that this news was, in fact, positive. She saw this as making progress. I saw it as more hem hawing and chewing the cud. I felt like he wasn't listening to the words coming out of my mouth. That the papers in front of him must be his lunch order because, if he could see what the other doctors had told me, surely we would be taking decisive action NOW. (puff out chest, look mean and authoritative) 

She saw it as one step closer to an answer. After some coaxing on her part, I saw her point and I tried to have a better attitude. We headed downstairs to get more bloodwork done. We clowned around with the Phlebotomist. Those ladies are always characters.  I left a little more light hearted. 

I would love to tell you that I wasn't the least bit cynical the next day when I received the phone call stating that I was right, again. I would be lying to you. I grudgingly told my fellowship group that night about the doctor visit and the results. Once again, my friend reminded me that this is progress. What would I do without her? She's like that good fairy tapping my shoulder and reminding me to be nice. To be strong. 

I scheduled a Thyroid Uptake and Scan for this week. Basically, this means that I had to take a pill that is slightly radioactive today. Tomorrow, I will return to the radiology department and they will scan me to see where the thyroid sent the radiation. The process takes about an hour. I will lie with a pillow under my neck and my throat extended for about 50 minutes. The radiology technician advised me that it will be uncomfortable and to take some ibuprofen before I arrive.

So, that is where we are now. It is still the waiting game.

I will try to choose positive thinking from this point on. 
I want to say, "it's just that..."  or "but it's frustrating because..."
I won't say that anymore. I will accept what is and work on what is to come. I hope.
For now, this will be my mantra:

If you want to research Grave's Disease, there is plenty to read when you google it. This disease is still in its infancy, as far as treatment and facts are concerned. However, Google doesn't really tell you what I've been going through. It tells you about the people who get enlarged eyes. It doesn't tell you that only a few rare percent of people actually experience that problem. 

My doctor told me that the thyroid can do ANYTHING. It can cause exhaustion, tremors, weight loss, weight gain, pain in the lower back and loins, skin issues, boils, a goiter, difficulty swallowing, loss of muscle, joint pain, body aches, brain fog, etc. 

I recently came across a blog that lists some 300 symptoms that people with thyroid issues can face. The blog was aimed at people with hypothyroidism, but it holds true for people with hyperthyroidism as well. I identified with so many of the symptoms that it felt unreal. I will share it with you below. Feel free to read more about this and ask any questions that you have. 

http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really/

Here's another blog that I came across. It puts What It Is Like To Have Grave's Disease into words that I haven't been able to find. I encourage you to read this if you are wondering what it is like to be me. 

http://gdcoffeebreak.weebly.com/1/post/2012/06/what-is-it-like-to-have-graves-disease.html 

Thank you for your attention and time. I appreciate your support more than you know. 

Again, if you want to know more, don't be afraid to ask questions. I don't mind answering them.