Insomnia

Insomnia is back.

Hmmmm.

Heart rate was up while bowling. Since when is bowling exercise?

I'm really hoping that my thyroid levels are just going up and down a bit until they balance out at normal.

We will see!

The Results Are In...

Kind of. We think. My endocrinologist called today and said, `It looks like you have had Post Partum Thyroiditis. Your TSH and free T4 levels are almost in the normal range'. This is very, very X 100 good news. She said that I should feel good in about 6 more weeks and generally women with PPT are 100% normal within a year. I see her again in 2 weeks and we'll see how things are then. My heart rate still gets really high quite quickly (walking, stairs, etc). I tried to jog a week ago, because I was so excited that I was having a good day, and after 4 minutes my heart rate was up in the 190's. She said it's because I have developed additional adrenaline receptors and this should also get better.

Dudes, when you look up Post Partum Thyroiditis, they make it sound like it's something that's not that big of a deal. If that's what I had/have, I did not get the mild kind. I got a severe case that is going to take a lot of recovering. My body has never been so weak. Ever. My leg and arm muscles are so soft. Good thing I've had to continuously lift Koen (22lbs) because that has kept my core somewhat strong. I have a lot of work ahead of me and I have to be patient with just walking right now.

I'm a little hesitant to be 100% overjoyed because I've had 3 different diagnoses within the hyperthyroid realm during the last 4 months. I'm scared that `something' will come up. I guess for now, I just have to embrace my health and assume that it is `just' PPT. My eyes have a lot of healing to do and she said that they should also be better in the next 6 weeks. The steroids have helped with the inflammation but still feel dry, gritty, and are light sensitive.

So thankful. Thank you for your thoughts and prayers! Please know that I am truly thankful.

How Am I?

I have no idea. I don't know if I feel sick from a cold, woman hormone stuff, eye disease or my thyroid. Hypo? Hyper? I don't know what symptoms to attribute to what. I don't know if I'm still getting better but just really getting hit hard by a cold that has elevated my heart rate?

I called the endocrinologist today. Office is closed Friday afternoons. Great. I'm assuming I'm in a healthy-ish range or they would've called yesterday...right?! Right?!

I've been putting steroid drops in my eyes from Dr. R. They cleared up the redness overnight. The steroids work to decrease inflammation. My eyes are still dry and gritty and sore. Oh well, at least they don't look bad:)

Have a great weekend. I'm confused:)

Sick

I now have a cold which has knocked out my exhausted body. My eyes are sore and sensitive today after all those tests at the ophthalmologist. I have a feeling that the endocrinologist will say, `I can't say for sure if you have Graves' , Hashimoto's or PPT, so we will have to do an iodine uptake test'. Or something. I'm suddenly not feeling very positive. My body and eyes feel wrong today. My emotional state (as those with wonky thyroids know) is a little out of sorts; irritable, frustrated, impatient...etc. Soon I hope to know what I'm dealing with. Hopefully.

Ophthalmologist

(Terrible picture but I'm too tired to take another and it's hard taking a picture of your own eye at night...)

Today I went down to the AMAZING Eye Care Center down at VGH. It was so awesome. Three floors full of ocular/orbital specialists. It's times like these that I don't mind paying my taxes to see some super awesome specialists. A whole building of people who specialize in eyeballs!

Okay, so my greatest fear about today was that Dr. R (whom I had never met) would say something like `What are you doing wasting my time? There are way more serious cases out there!'. However, that was the furthest thing from what actually happened. I almost wanted to hug him at the end because he was the perfect ophthalmologist for me!

So, although I did end up waiting an hour, he was very efficient, friendly, validating, and I can't think of the word right now, but he talked to me like an equal. Ya know? He was saying things like, `I'm so glad you came in', `You've been doing all the right things', `Your summary is very accurate' etc.

The equipment was awesome and high techy. I was scared because he told me to look straight into this laser beam type light. I'm sorry, but when you've been hiding from the light, that is a scary feat. It was fine. The only actual pain I had was when he had me keep my head straight but look up with my eyes. OUCH.

So, since stopping ALL OF MY MEDS as of one week ago, my eyes have improved a ton. I still need my artificial tears and bright lights hurt a bit but nothing like before. Still red, especially in my left eye, but not as bad.

So, what did the lovely Dr. R say? He said some of the following:

-he is very interested in seeing if I have Graves' or PPT because he hasn't seen (any?) patients with eye problems like this with PPT. Usually, it is just some swelling. I will see him again in 4 months.

-my problems are now considered mild (but he did not minimize it). He was glad they are mild now because it provides a great baseline.

-he gave me a prescription for some new drops that should alleviate the red but not solve the problem of the bumps. He told me the name of the bumps, pterygium or pingueclula, which are deposits of fat and protein due to eye irritation, generally a lot of sun or wind exposure. I don't see how I could've gotten it from that but I know my eyes have been VERY irritated!

-if I have any change for the worse, call, and he will get me in.

-because it is painful to look up, most of the inflammation has occurred at the base of my eye. He said they could do a CT scan to see how much but it wouldn't be worth it because there is nothing you can do.

-He also told me that his one year old daughter wasn't walking yet and asked if I had any tips:) ha ha.

He was great. He is an ocular surgeon and orbital oncologist. Doesn't that sound impressive? I'm hopeful that my eyes will heal but I really need to take care of them.

My only question now, is do I have TED (thyroid eye disease also known as Graves' Ophthalmology)? I didn't ask. I need to look into this a little. But not now. Must close the eyes. Bon nuit.

Waiting....

I've been off all my meds for 5 days and am feeling better and better each day. I am still waiting patiently for a blood test next week. Hoping that the TSH and freeT4 levels will be able to indicate if it really was PPT or Graves' or Hashimoto's or what. With the thyroid involved, can you ever be 100% sure what's going on? I'm feeling 80% positive that it is PPT which means I will get better without meds, surgery, radiation etc.

What a roller coaster to re-evaluate your life. Like I haven't had enough of those?!

Reason for everything, this I know.

Definitely going to be trying to have a much more stress-free kind of life.

In the meantime, I'm enjoying the lack of pill popping. Just a multivitamin and probiotic and I'm good to go!

I'll keep ya posted.

Hopeful

I was going to have a post about what a waste of money the ridiculous naturopath was that I saw this morning (so rude, condescending, expensive....and I let everyone in the office know it too-oops!). However, I have gone from tears and frustration onto an immense amount of hopefulness because....

When I got home from the jerky naturopath, there was a message on the machine from my endocrinologist. She said that my recent blood tests show that I have a bad case of HYPOthryoidism right now and need to get off my meds now. That would explain my goiter growth and my eyes having such a hard time. My meds have slowed down my thyroid too much. MORE IMPORTANTLY, SHE SAID I MAY BE HEALED. SHE SAID I MAY HAVE HAD POST PARTUM THYROIDITIS THIS ENTIRE TIME. I asked about the antibodies that were present and she said I might just be `an interesting case'. She also said that if I had/have PPT I should not have been on PTU (my meds) which I hope had no damaging effects to me.

I will be off my meds for one week and then take another blood test. She said buy the champagne and be prepared to drink it in one week. Here are the thoughts that went through my head in the first 2 minutes after hearing all of this:

-I don't believe it

-I need to believe it. There is hope!!

-I want to go for a run!

-I'm going to be normal?!

-(insert some kind of swear words)

-Thank you God!

-I feel so bad for the people that really do have Graves' Disease and have to live this way their entire life

-Please, please, please let this be true!

-cry, cry, cry

-I can't believe I might be normal!

-I want to go for a run

-I can't go off my meds, I'm scared that I will relapse

-I might be almost better?!

-I need to know what's up with my so I can let the people working on my long term disability know!

-Should I be hopeful? I bet it really is Graves' and I'm excited for nothing.

-I really feel bad for people who have Graves', or any other lifetime illness, without a cure.

So, here are some prayer requests if you are the praying type. If not, please remember that next week I will go for blood tests on Tuesday and hopefully by Friday we will know!

Pray that:

1. That it is post partum thyroiditis and I will be healed!

2. That my heart, body and eyes will heal. My heart still feels very strained and seconds away from a heart attack. I don't know if it's the meds or my thyroid or what.

3. If I am normal, that I transition well into whatever role that may be. My job is now `gone' and we are starting the process of looking into a local adoption.

Woohoo!! Thank you God. Hopeful. Thankful. A little scared.

A New Symptom

Look at my nail bed. You know, where your nail meets the skin. I have a depression there. I'm sure it signifies some nutrient deficiency. I don't care about my nails at all (they used to be strong and long). They are short and brittle. What I don't like is how it indicates that my body is not okay. I can't just take multivitamins, or iron, or whatever I want because it interacts with my meds. I learned this the hard way. So, I am seeing a naturopath, who is apparently very good with thyroids, and I'm hoping that things will improve. I hate that it is not covered, well, sorry, $25 is covered. LAME. Oh well, better than nothing. I see him Monday!!!

My eyes have not gotten better or worse over the past week. I am learning how to cope. I use my lubricants and artificial tears, I wear hats and glasses, and I stay away from bright lights. Oh my goodness, I think a week ago I was holding the light meter with our studio lighting and Gary set it off while my eyes were still open. Terrible, terrible pain. As long as I can still do photography, I will not complain....too much. I was supposed to see the ophthalmologist for Graves in FEBRUARY but I said two months was too long so I'm seeing a coworker of his in 2 weeks!! Woohoo!! I hope I wasn't annoying, I called there two times about their wait list etc. I'm not messing with my health. I will do whatever it takes to get as good as possible.

(Eyes have not gotten worse...below)

Below is my `going out' wear. I wear glasses inside the stores and so far no one has said anything. Phew. The other day Gary came home and I was watching tv in the dark, with sunglasses on. I felt quite pathetic. At least he said I was cute. It just sucks that 90% of my social life (getting out) involves visiting specialists or doctors or BC Biomedical. I mean, they're nice, but still, that's not really cool. Can you think of anything fun to do that doesn't involve light or eyes? Books on tape maybe? Don't mention any bedroom stuff, that was Gary's suggestion. Thanks, dear.

I know things could be worse. I'm scared they will get worse. My goiter has grown and my neck is so sensitive. This is tough with two rambunctious boys. I can't believe I have a life long disease. I never expected this. I expected cancer. No, that wouldn't be better, I know. I'm sure I'll get it anyways. I'm not being pessimistic, just realistic. Both of my parents had it and my mom died of it.

Once a week, I'm like `Okay, as long as it stays like this, I will be happy and enjoy life, just like before' and then another symptom comes. Grrrrrrrr. I really, really do not want to get depressed about this. I really, really need to maintain a positive mindset.

Later this weekend, I am going to post a `Friends and Family; What to Know' kind of post. Things that I would like everyone to know about Graves' Disease and how to support me. So, check back:)

Graves' Ophthalmopathy

Graves' Disease is an autoimmune disease. The antibodies that attack my thyroid also attack my eyes separately. Even if one is under control (my thyroid), my eyes can flare up. I had a tough week on my eyes and have since then taken very good care of them with eye lubricants, lights off etc. They have improved drastically. I asked my endo why it got so bad and she said it could've been too much iodine (I'm not supposed to have iodine).

Key symptoms can include:

-eyelid retraction

-bulging/proptosis

-dryness (YES)

-tearing

-puffiness (YES)

-twitching

-staring

-uneven motion of upper eyelid

-lid lag

-blurring of vision

-reduced color brightness

-double vision

-light sensitivity (YES)

-aching and sore eyes (YES)

There is a 6 level classification for eye problems:

Level 0: no signs

Level 1: only upper lid retraction and stare

Level 2: Soft tissue involvement (pain behind eyes, light sensitivity)

Level 3: Bulging

Level 4: Double Vision

Level 5: Corneal Involvement

Level 6: Sigh loss (due to optic nerve involvement)

So, I am at a level 2.

One study found that over 12 years, more than half had double vision, 28% had reduced clarity of vision, and 60% had bulging.

Here are my well lubricated eyes. It's important to document pictures of your eyes for the ophthalmologist to recognize changes. I don't know if you can see it, but between the iris and the inner part of my eye (right side of picture), I have a small growth. It exists on both eyes now.