Legend of the Dreambox

I don't know about you, but even though I don't put too much stock into legends or wishes coming true, when I need something to believe in, I can't resist these things. 

Aaron and I are visiting an awesome little northern Arizona town bordering an Indian reservation this weekend. We had a great day exploring antique shops and an open air art festival. It really was a lovely day. 

We visited a particularly odd little Native American place called Harvest Moon Antiques. It had all kinds of odd things for sale from sun bleached bones to coyote pelts and sage burning kits. We looked around for a bit, and I told Aaron I wanted to find something that would be good juju. About a minute after I said that, I spotted the Dreamboxes. They had all kinds of animals hand carved on them from wolves howling at the moon, to snakes and bears. Above them was this sign. 

It was exactly the kind of juju I was looking for. This particular box caught my eye. On it is a beautifully carved Ram and a tiny aquamarine bead. My astrological sign is a Ram (Aries) and my birthstone is aquamarine. Believing in signs is kind of like believing in legends, but it was too cool to pass up. 

So, my sweet husband bought it for me, and when we got back to the hotel, I wrote down my fondest dream, greatest desire and strongest wish on a small piece of paper, and I placed it inside the Dreambox. 

Who knows! Maybe this legend of the Lakota Sioux Indians will make my wish come true :)

Because sometimes, you just have to believe. 

Learning New Words

Let me tell ya, in the last 4 years I've learned so many new words I've lost count. Medical jargon I never had an inkling I'd have to learn, nevermind understand. It's amazing how most of us walk around never knowing what everything in our body is called. Did you know you have a hypothalamus? Neither did I. But I had to learn what it meant and why it was involved in my diagnosis. As an endocrine patient, I've learned so much about my hormones, glands, metabolism, and how they all connect together to make a human body work. It's fascinating, really. There is so much to learn and understand about our complex selves, I now sympathize with scientists ;)

Returning to my ever evolving vocabulary. Today's new word? Idiopathy.  

id·i·op·a·thy

ˌidēˈäpəTHē/

noun

MEDICINE

1. 1.

   a disease or condition that arises spontaneously or for which the cause is unknown.

   
   

   
   

Rigorously verified  Idiopathic AGHD likely comprises less than 10% of adult GHD patients, an already rare disorder.

Yep... That's my diagnosis. Idiopathic adult onset human growth hormone deficiency. Meaning they finally discovered what's wrong with me, but there is no logical reason they can understand. It's rare, then add more rare on top of that. Yayyy me. 😒 Thankfully, it can be treated just as if there was an obvious cause (like the tumor I was convinced I had) and after I start the hormone replacement therapy, I should start feeling better. It will likely take at least 6 months, but there is hope on the horizon. 

It took me a few days to fully wrap my head around what it meant, but I think I'm finally at peace with this explanation. At first, I was frustrated that I didn't have a definitive answer like I wanted. I wanted proof and solid evidence as to what was causing this. The "we don't know what's causing it" I got from my doctor wasn't good enough. I felt I deserved more. I stayed frustrated for a few days until I could accept there was no other answer they could give. This was it. 

I am truly appreciative that I don't have to face brain surgery. I was all brave armor, but scared as shit at the prospect. Not only that, this means I can start the recovery process this much sooner with the injections, rather than having to wait until after surgery. Also, sparing all the expense is a huge relief. 

Overall, I can say I'm okay now. I just want to start the treatment so I can begin feeling better and living like a normal 30 year old woman should. 

MRI Results

Dr just called! No tumor. She said there was nothing obvious on the MRI. So I asked why I was deficient if there was nothing compressing the gland and she said if there's no tumor, 99% of the time they have no idea what's wrong and it just is what it is (aka I assume I have to take the injections all my life since there's nothing to fix) So next I'm being contacted by the drug company who will come out and teach me how to administer the injections etc. She said it will take about 6 months for me to feel better, at which time they'll review the dose etc. So. That's that. I don't know whether to be relieved or frustrated. I'm relieved I don't need surgery, for sure, but frustrated that yet again, they have no idea why my body is doing what it's doing. Oh well. As long as it can be fixed and I feel better. That's all I want. 

MRI

The date of my MRI got moved a day UP! Ususally things move backward, not forward! I was very pleasantly surprised :) So this coming Tuesday, April 1st, I will be getting an MRI of my brain done to hopefully locate the tumor that is very likely crushing my pituitary gland. 

I've made peace with the fact that chances are very probable that I DO have a tumor. I'm okay with it. I just want to get it the eff out, start feeling better to get on with my new healthy life. Just trucking along on this journey. I'm just glad things are actually moving forward at this point. 

Yesterday I went to Sedona with my family, and we went to the healing energy vortex and the chapel of the holy cross to pray for my health, and future children. It was a very beautiful and calming experience, and I will carry that in with me to my appointment. 

This is it.

I was prepared to wait the 2-3 weeks they told me it would take for news, but this morning, the morning of my 30th birthday, I finally got an answer. This is it. After almost 5 years or feeling terrible and struggling through life, I finally have a diagnosis. 

Adult onset human growth hormone deficiency. 

It's rare in adults, and hard to diagnose. But it's the answer to everything that's wrong with me. 

The extremely likely cause for this is a tumor growing on my pituitary gland at the base of my brain. The next step in the process is getting an MRI to find out the size and location of this tumor. Then, removing it. Then, growth hormone replacement therapy. Though I have a diagnosis, I'm not out of the woods yet. It's going to be a long process and recovery, but now that we finally know what it is, we can work on fixing it. 

As scary as brain tumor sounds, getting the news this morning was the best birthday present I could have asked for. This is it. I'm not crazy. I've been suffering for years and now I finally know why. As of right now, as I'm sure this will change, I'm not scared. Just ready to move forward to move toward my happy future. 

I've been given the gift of starting my 30s with the answers I've been seeking and the ability to heal. This means so much to me. The prospect of being 30 isn't so scary anymore. It's beautiful, and encouraging. This decade, all my dreams will come true. I'm certain of it. :) 

Finally!!

The day is here! Tomorrow is finally time to have my growth hormone stimulation test done. It's been a very very frustrating few months leading up to it! First, I had to wait nearly three months for my appointment with the specialist who had to order the test. Then it took about three weeks for the hospital to call me to schedule it. My original test date was January 27th. The night of the 26th, they called to let me know the test wasn't covered by our insurance because since it was January, our deductibles had just restarted. Ugh! They quoted me $1200 for the test and basically demanded half down to keep my appointment. We just didn't have it, so they canceled my appointment. Very frustrating. 

Once we had the money raised, I called back to reschedule my appointment. It was then they decided to shock me with the 2014 price. Apparently I'd been misquoted the 2013 prices and now the cost was $1700!! They wanted almost $750 down now! I nearly fell off my chair! 

I told them it was their fault I was misquoted and $400 is what I had. Thankfully they found that acceptable and scheduled me for their nearest time. 

Which brings us to tomorrow! March 17. St. Patricks day! I sure hope the luck of the Irish will rub off on me! To help along, I have rainbow nails and rainbow socks hehe. I have to check in at 7:30 am, and the test will start at 8. I will basically be tethered to an IV line all day. They will give me something to stimulate my pituitary gland to make growth hormone and take my blood every 30 minutes to measure if it works. I'm a little nervous, but not exceedingly so. I'll be ok. I'm nervous about the results, not the test itself. 

I know it may sound weird, but God, I really hope this is it. I've been sick for so long. I just want to know what it is so we can start moving forward with treating this thing so I can start being healthy! Fingers crossed the results won't take forever! 

Test scheduled!

My growth hormone stimulation test was finally scheduled for next Monday, the 27th! I'm relieved and can't wait to get it behind me. 

Results

Well, after spending most of the day pissed off about not getting results because they were closed on the day they told me to call, I missed a call from them at 5:30 pm. Go figure. They left a voicemail saying my test results were ready to view on my patient files on their website if I wanted. I think it's pretty cool that it's an option. 

I went and checked right away, and the test for Cushing's disease came back negative. That means the pill I took to suppress my cortisol levels definitely worked and they were not elevated at all when they took my blood the next day. 

I'm definitely thankful not to have been diagnosed with Cushing's, but part of me is extremely frustrated that yet again, this wasn't the answer. I'm still waiting to hear from the hospital to schedule the growth hormone test. This is what Dr. C sent me in for in the first place, Cushing's was just a secondary test run by the new Dr to make sure she wasn't missing anything. I'm hoping his hunch was right and I'll have answers soon. Just more hurry up and wait. 

Waiting for News

Tomorrow will be one week since my long awaited appointment with the specialist. Things went well, she just went over my history and symptoms and she ordered two tests. 

One test is to check for what Dr. C sent me to her for in the first place, the growth hormone stimulation test. I'm waiting for the hospital to call me to schedule the procedure. I'm hoping they will call this week. 

She also wanted to test for Cushing's disease. When I first started researching the battery of tests Dr. C ran, I came across Cushing's as a possible thing he was looking for, so I am familiar with it. It's a condition where your body produces too much of the hormone cortisol and it disrupts everything in a bad way. 

That test I was able to do at my pace, which I liked. I took care of it right away. I was prescribed a cortisol suppressor pill which I took Thursday evening after the appointment, then went in for a blood draw first thing Friday. That should let them know if Cushing's is a real possibility or not. I'm supposed to call them by Friday morning if I haven't heard anything yet. I'm going pretty crazy....

So fingers crossed I will hear tomorrow, and then we will go on from there. 

100th Post.

Is it a coincidence that my 100th post on my blog is when I return to it? It certainly wasn't planned this way, but at the same time it has a certain ring of irony to it. I came to blog to mourn the fact that it's almost December 2013. In my world, that means it's been nearly 4 years since I first started battling infertility. Four years and 100 blog posts. Still no baby.
For those of you following my weight loss blog, I thank you for all your support and encouragement, but as life is again switching gears to my medical health, I decided to change the pace and blog here, where my entire medical history is. Though my weight loss journey was an awesome experience (and it's not over) it didn't work right for me. Not when these other health issues are holding me back.

I guess I should start with the fact that Aaron and I have a whole new life now. We no longer own Bruno's, and took our dogs and jetted off to sunny Arizona. Well, not jetted. Painstakingly drove our tiny car to Arizona is more like it. We needed a change. Our life back in Washington was going down fast and we decided to jump ship. I am so glad we did. I absolutely love life in Arizona. Our strained financial situation followed us, but it's easier to smile and wait for better days when the sun is beaming down on you :)

Health wise, I am still struggling, hence the return to this blog. After waiting a long time for the "feeling normal" to return after I was diagnosed with Hashimoto's Disease, I began to realize that normal was not coming back. I am still suffering from the same symptoms, and it's taken a giant toll on my quality of life. I am constantly drained of all energy and in bed, dealing with nasty insomnia, STILL losing my hair like crazy, period problems and a whollllle bunch of other things I could list off. But I won't. I don't want to give off the impression that I am a whiner. I am ill. My symptoms keep me from living a normal life. I've come to terms with that. But there is a glimmer of hope. For the first time in a long time, I think there may be light at the end of the dark dark tunnel. It certainly feels like it's meant to go my way this time. The seas practically parted to have me meet my new doctor.

Years ago, I met a wonderful friend through the bond of infertility on a message board. Said friend happens to live in Arizona! I was able to meet her for the first time in June of this year! She is just as wonderful as I imagined she would be. Her doctor, who is now my new doctor, helped her conceive her adorable daughter. When she learned that we were moving here, she was excited to share his info with me for when we were ready to try again. Whenever that was...

In August, we were heading back to the Northwest for an amazing family reunion when my dear friend reached out to me to let me know she had heard her doctor was having a free seminar and was offering a free consultation to go with it. It was scheduled literally for the day before we were leaving. She suggested we try to make it, as it would be a great way to meet him and see his bedside manner firsthand without having to make an actual appointment. If we liked him, great! We could follow up with the free consult when the time was right. If not, we didn't have to pay money to realize he wasn't for us! She warned us ahead of time that he was a bit of an unusual kind of doctor. He is eccentric but brilliant. He really steps back and looks at you as a whole, instead of trying to treat each individual symptom. We decided it was a great idea, and that we should sign up for the opportunity to meet him.

The morning of the seminar, poor Aaron woke up with a bad headache. He doesn't get them very often, but when he does, they are a doozy. It was clear he didn't want to go anywhere with the way he was feeling. I decided we should just stay home, and meet him at a later date. But something kept nagging me to go. I decided to follow my gut, and after tucking Aaron back into bed, headed out to his office in Scottsdale alone. I got there a few minutes early and checked in. The receptionist let me know that they were expecting four more couples before we could begin and to have a seat. So I did. And waited.... and waited.. and waited. After about 40 minutes, she had me come up to the desk and told me that it was clear the other couples who had signed up were not coming. She was sure to point out that this was highly unusual for them. They did seminars every once in a while, and always had good attendance. She then presented me with two options. I could watch the seminar alone, or I could have my consultation with Dr. C right then and there. I was completely unprepared, but decided the consult was the best option.

We spent nearly an hour together, going over my history and discussing my symptoms. Dr. C has a giant art pad on his desk and spent the hour doodling as he explained, which happened to be fantastic for me, since I am a visual learner. He gave me his opinion as to what he thought the problem was. Without any other facts to support it, it was his best guess that part of the problem was my immune system. Due to common viruses that most of the population has, (and doesn't know about if their immune system is working right) my immune system was being held hostage in a dungeon (and yes, he drew the dungeon) and the viruses were running around wildly, using my body as a playground and causing massive inflammation in all my cells. He sent me off with two lab slips to get some blood tests going to investigate further. Between the two separate times I had to go during my cycle, the wonderful *cough* lab took 15 vials of my blood for testing.

A few weeks later, Dr. C called me in to his office to give me the results. He had tested very widely to try to catch the real reason why I was still sick. He believes it is a rare condition called "Adult Onset Human Growth Hormone Deficiency". And I thought Hashimoto's disease was a mouthful! Ha! Since he first said those words to me, I have spent hours researching exactly what that is and what it entails. I've learned A LOT. I won't blog about that until the diagnosis is confirmed, however, no need to worry myself (and you) more.

The next step is hurry up and wait. Again. He referred me to a Pediatric Endocrinologist. Why pediatric, you wonder? (as did I.) Because it is condition that most happens in children. Adult onset is rather rare, so I have to see her since she is so well versed in it dealing with children. I called to make my appointment in October, and the soonest they could pencil me in was January 9th. Argh. So here I am. 4 years and 100 posts later, hoping and praying this is it. Please let this be the real diagnosis once and for all so I can get treated and begin to heal!! I'm ready to lead a normal life and be happy. It's time!

So until January, I won't have much to share here. I will trudge through another childless holiday season, and hope that it's the last one! Happy Thanksgiving, Merry Christmas, and Happy New Year to all my friends reading this who have beautiful families. Enjoy. oxoxoxoxo

A Break..

I love this blog. It has my journey written all over it. My pain, sorrow, discovery of myself and my limits.. And I think it's a shame that I don't write in it anymore. But my journey (and fight) with infertility is at a standstill, and has been for a while. I reluctantly put trying to get pregnant on the back burner quite some time ago, and now it's time for me to begin another journey in order to continue this one. I will be back to this blog. I promise. I will finish it with a happy ending. This is just a pause in the process.

7 Months

It has been 7 months since I wrote in my blog, yet I didn't notice when I stopped. For several months last winter, I was in a very dark place. I was living somewhere I felt completely trapped, and a depression ensued. Long days of doing nothing but stay in bed turned into weeks and months. I started taking an anti depressant a few months back, I don't recall when.. It's been hard to remember things lately. It seems to be helping, I suppose. After all, I do get up each morning now. I haven't felt a HUGE difference, but I think I'm definitely better than I was before.

A lot of things have changed in the last few months, too. Aaron and I finally moved the hell out of the horrible place we were holed in, and got our own apartment. We moved in February 1st. For the first time in a long long time, I had something to smile about. Then, in March, we were completely floored and surprised with an amazing opportunity.With the aid of an investor, we were able to purchase a 107 year old photography studio, very well known in our area. It was very exciting, but a very emotionally taxing experience as well. A few months in, things are better and we are settled, but we still have some stress getting the business back on its feet after a slight absence in the community. I'm so thankful to have somewhere to go everyday, though. A job again. Somewhere where I am needed and do productive things with my time. It's been a healing thing for me also. Taking a little piece of my life back.

On the health front, I honestly have not been doing so well. Everyday is a struggle to find 5 minutes when I feel "normal". I just feel sick all the time. I don't really know how to describe it, other than to say that I just don't feel well. It's hard. I hate having to tell my husband every day that I don't feel good. The look on his face almost kills me. I know he wishes I was better and that he could do something more to help me get there, but I'm sure he is getting pretty sick of hearing about it. I try not to complain too much, but when I don't feel good, I just don't. My symptoms feel like they have been escalating lately. I feel yucky/tired all the time. The simplest task (a good example of this is taking a shower) becomes incredibly taxing to the point where I have to lie down to rest afterward. I've been having dizzy spells and heart palpitations. Sometimes I'll be sitting still and my heart will start to beat wildly as if I just ran a marathon. It's very unnerving. One of the worst symptoms to me, is how badly I've been losing my hair. Everyday, I lose handfuls. When I shower, I don't exaggerate when I state that I pull out at least 2 fistfuls. I can never wear my hair straight any more. The minute I exit the shower after untangling it, it starts the nasty cycle again. It dries, starts falling out, but has nowhere to go so it gets stuck within itself and tangles to the point of needing conditioner and a hairbrush in every shower. It's fairly long right now, past my shoulders. But tomorrow I'll be headed to a salon to have it cut short., probably somewhere between chin and shoulders. A layered bob. I figure it will be easier to take care of this way, and I might actually feel pretty again. Speaking of feeling pretty, the unrelenting weight gain has been so painful and difficult. No matter what I do, I don't have the energy to exercise properly, or, let's be frank, the metabolism to even warrant trying. My doctor made it pretty clear that having this disease makes it next to impossible to lose weight (no matter how much you exercise) unless your medication is on the right dosage. Given my symptoms and their severity, I do believe I am wayyyy off.

Unfortunately, owning your own business means you don't have a corporate daddy to pay half of your insurance bills anymore. No insurance = no doctor. For now at least. I am working, but not making any money quite yet. Fortunately for our situation, Aaron was promoted to district manager of CPI Corp. a few weeks ago. His salary bump should help us to get caught up and stay afloat a little higher.

Basically, all in all, things are good in some aspects, just not in my health department. And let's face it, it's hard to focus on all the good when you don't feel good. I am trying, though.

I really hate how my mind thinks, but I really can't help it sometimes. I just go back to the place when we decided to start our family. It's been two and a half years. Still no baby. And no hope of even HOPING for one any time soon, either, with how I'm feeling. My body is so messed up it can't even function on it's own. How I remember how gleeful and giddy we were at first... only to be so disappointed. We wanted a baby. What did we get instead? A pile of doctor bills and a shitty disease that make my life hell.

I've come to terms with the fact that we aren't trying right now. I know with how I'm feeling, I wouldn't be healthy enough to have a good pregnancy. Yes, I've come to terms. That doesn't mean it's easy. Usually I get by okay. Yes there are the pregnancy announcements by the dozens, and the fact that my friends are now lapping me and are pregnant with their second child... That stuff doesn't faze me anymore, on a good day. But then there are days when something will catch you so out of the blue, that it knocks all the air out of you.

Father's day, for instance. We went to Aaron's parents' house for brunch. Our little nieces are growing adorably, and are now old enough to be little nonstop chatter boxes. We were all sitting around when they innocently sang the "Happy father's day" song for uncle Aaron. My heart stopped and I could hardly take my next breath. And it hit me just how incredibly sad it was that they didn't grasp the concept that uncle Aaron wasn't a dad, because he's the only married adult male in his family to be childless. Heart wrenching.

Usually, I won't have two bad days in a row. But as luck would have it, today was not good for me also. Aaron had to go to one of his stores for work, and I tagged along. This store was Babies R Us. I was actually excited to go in, because TTC or not, I've always loved baby items. At first I was fine. I walked around and looked at the clearance racks. Then suddenly, I looked up and there was a pregnant woman. I looked away, and there was another. I looked all around me and realized I was surrounded by women who were at Babies R Us to plan the future of their real baby, not their hope to have someday baby. I walked away, but my heart started beating very fast and I could hardly breathe. I felt myself breaking apart, but thankfully, I didn't let it happen. I picked up my phone and called my best friends for a distraction. It worked. I felt so unsettled afterward. It really did hit me out of nowhere. I wasn't going in to feel sorry for myself, but I certainly left feeling so.

 When I was blogging before, I always felt that writing down my feelings was helpful. I realize now just how therapeutic this 2 am writing session really was. I'll be back.

Ever feel like you're sitting at the edge of your life, waiting for it to begin? You see everyone around you moving forward, but you're sitting still. You're in a glass bubble and you want nothing more than to break free and join everyone on this journey called living. You try to stand and punch holes in the bubble, and when you succeed, you feel an incredible rush. Only to crumble again when you realize your bubble has one thousand layers and you do not have the energy, or; admit it, even the desire to keep punching. You sink back down and continue watching everyone through the glass. No one is flaunting their forward motion, but it's so glaringly obvious, you feel like they're laughing in your face. You watch everyone seemingly glide through their twenties with every ounce of poise you only wish you could muster. Dream jobs, dream homes, dream families. Everything you wish you had, so far out of reach seems to come so easily for others. You recognize that they have worked for it and deserve it, but didn't you do something right, too? My bubble feels like it's getting smaller now. I have to curl up in a ball to keep my heart from feeling like it's falling out of my chest. With my face pressed on the bottom of my glass prison, I continue watching and hoping that someday, I can break free....

UGH.

I always promised myself I wouldn't be one of "those" TTCers.. The kind that go on facebook and start to cry. The kind that see everyone they've ever known post updates about their pregnancies and adorable pictures of their babies, and get angry and bitter. It's not at ALL that I'm unhappy for my fortunate, fertile friends, not at all.. I am happy. They have every right to boast about the happiness they are feeling.. Because you bet your ass when it's my turn, I'll be doing the same damn thing. It's just difficult. It's been getting harder lately. The problem with being friends with lots of women in their twenties and thirties, is that eventually, they all get pregnant. And you feel left behind. I don't know what kind of water the women within my friends circle have been drinking lately, but it's a god damn baby boom out there on facebook land. I shit you not, every second or third update makes me want to cry.

I don't have any plans of blocking anyone, or avoiding facebook at all, so I guess I just better grow a thicker skin.

Being a LTTTCer SUCKS!

Results

Well, there was improvement. Not enough, but we're definitely moving in the right direction.

Before starting on the hormone replacements, my thyroid levels were so low, there were almost literally undetectable. They started at 0.3 and now went up to 1.3. The normal levels are 3-5. We are definitely going up which is good.

Before, my Thyroid Stimulation Hormone (TSH) levels were ridiculously high; 123.6, while they should have been somwhere between 5-15. I am happy to report they plummeted down to 8.3. In the comments section of the paper my doctor gave me, though, she marked down that 8.3 was still higher than she'd like it.

Based on those results, my levothyroxine dose was increased from 100 mcgs to 125 mcgs daily. It's now been 10 days since the upgrade, and I think I feel a little better. It's hard to tell yet, but I feel a twinge of good. :)

I also received an unexpected shot while I was there. I was a bit of a baby about it (you would be too if you didn't know it was coming!) but it was mostly pain free (most of the tenderness and pain came days after!). It was a shot of vitamin B12. Apparently that came back low when they measured my vitamins (vitamin D is still low also) and it has a lot to do with feeling tired and grumpy. So right then and there, they injected me with B12. I can't say I felt much of a difference energy wise, but we were just coming home from a super busy tiring weekend, so I'm not sure if it compromised the results. Today I went to town and picked up a bottle of B12 vitamins that I'll start taking daily, so we'll see later if it makes a difference!

So there we have it. I go back in on August 24th for my next blood draw and hopefully I'll see an even better result!

On a side note, I just finished up my period. It was much more normal this month, but still dragggggged on for 11 days!! But it looks like I may be back on track :) yay. I will probably test with OPKs the next few days to see if I'm ovulating :) Just for fun...

2 more days!

And I will know the results of my blood draw. The last week has gone by fast and slow at the same time. Fast, because I had a blast with my family at the beach, and slow because I've been trying not to drive myself crazy wondering what the doctor will say Monday morning.

On another note, I think AF is here. I've been spotting for a few days and today it seems to be picking up (unfortunately, along with back pain and cramps) but it would be a good thing to have a real period considering last month.

The Results are In

But I won't know until Monday July 18th at 10:20 am. I had my blood drawn this past Tuesday.. No problems this time, thankfully. I got a call this morning from their office that the Doctor wanted to see me in person to go over the test results and discuss the next steps. I'm leaving tomorrow for a 6 day beach vacation with my family (yay) so I have to wait until after that!! Kinda lame, but the fact that they were okay with that and that they said nothing about changing the dosage of my medication until I sit down with the Doctor made me feel a little better. It's always always about waiting though, isn't it? Sigh.

Another bump in the road..

Knowing where to begin is proving to be difficult.. I've been hit with so much new information recently that I've been left kind of staggering, trying to regain my footing in this new change in my life. About 3 weeks ago, I was diagnosed with Hashimoto's Disease. I've been absorbing as much new material as possible, and I feel like I'm still trying to catch up. When you find out you have a disease, the first thing you want to do is learn all about it and try to understand. I am in a better place now, as far as knowing what's going on with my body, but I feel like I still have a lot to learn. I'm trying to take it all in stride and remain positive, but it's difficult.

I guess I should start at the beginning.. For the past few months, I haven't been feeling well.. To be honest, I haven't been feeling well for a lot longer than that, but recently, it's made a bigger impact on my life. I was constantly in pain from cramps in my legs and lower back, I was feeling nauseous and had an upset stomach daily from the medication I was taking (the wrong medication, but we'll get to that), my skin was getting super dry and cracking, my hair was falling out and felt like steel wool, I was packing on the pounds even though I was on a strict diet, and I was really starting to get depressed. It was hard to get out of bed, to get dressed, to do anything. I had no energy and no desire to do anything. I was a complete train wreck emotionally, crying all the time for no reason.. I put on a smiling face for my friends and family, but I was really starting to lose it. I knew something was wrong and that I had to do something about it. I made the decision to go see a general practitioner here in Washington since the last 3 doctors I had seen in the last year were so field specific. The neurologist, the gynecologist, and the reproductive endocrinologist.. I felt like we had too many fancy titles. I just wanted a plain ol family doctor who could help me. I found one online that was close to home and made an appointment mid May.

I went in with 3 major concerns. My leg and lower back cramps, my depression, and my weight. We briefly went over my trying to conceive history and I described my symptoms to her. She had me take a little "quiz" that was supposed to help her diagnose depression, and she said that based on the results of that quiz alone, she felt comfortable diagnosing me with Situational Depression. She said the stress of TTC, moving, and losing my job in the last 6 months were most likely the reason I was feeling this badly. I was offered anti depressants right there, but she asked if I felt I could wait a little longer. Because although she thought they would be beneficial, she wanted to draw some blood and run some tests to see if anything else was really going on. And boy, am I glad she did. I told her I could definitely wait longer before taking any kind of pills, and I left her office with a lab slip in my hand.

The next weekend, I went to get my blood drawn. That was an event in itself... To make a long story short, I had to be poked 5 times and go to two different clinics before they could get any blood out of me, and they had to fill 7 vials. Both ladies taking my blood sure weren't helpful in making me feel better. They kept gawking at the lab order saying that this was so many tests and so much blood. We managed to get it done, and I made a follow up appointment with the doctor to hear the results on June 15th. They told me that was the soonest appointment they had. On June 2nd around noon I had a message on my cell from the doctor's office saying the results were in and that they needed to see me as soon as possible.. I called back, and at first all they would tell me was that they wanted to see me tomorrow if possible to discuss the results in person. I told them I had a follow up appointment on the 15th and she put me on hold, talked to the doctor, and said that they canceled someone else's appointment tomorrow to have me come in. That's when I really started panicking. I said they were really freaking me out and asked if something was wrong with me, and she said that everything was fine, but the doctor wanted to talk to me in person right away so we could start a treatment plan right away. That's when I lost it and demanded they tell me what the hell was going on. She hesitated (I don't think they say stuff over the phone) and said that my labs came back positive for severe hypothyroidism. I wasn't even sure at that point what that really was so I was scared.. I called DH right away and he told me a tiny bit about it, what he knew, which was almost nothing, and he thought the receptionist really freaked me out for no reason. Now that I knew something was wrong, the next day couldn't come soon enough.

The appointment went pretty well. I mostly sat and listened in silence and asked a few questions at the end. My actual thyroid gland was so messed up that it registered no hormone production in my blood, and the gland in my brain in charge of stimulating the thyroid was at a number of 123.6. The normal range for that is 5-15.. So mine was extremely extremely high. Apparently it's the answer to why I've been feeling so awful lately. Almost a month ago exactly, I started taking thyroid replacement pills that I will have to take for the rest of my life. I started on a higher than normal dose to start because my levels are so high, and I have another blood test scheduled for July 5th to see how it's helping put me in the right range. It may take a few months to find the right dose of the hormone replacements I need, but once we achieve that balance I should start feeling much better. I asked specifically if it impacted my menstual cycles and fertility, and she said it absolutely did. Everything is thrown out of whack and doesn't work properly.

On a good note, the results for PCOS came back negative! She said the RE absolutely assumed and diagnosed me with the "variant" without doing the further testing he should have.. So when we do get the green light to TTC again, I won't have that complication to deal with. The even more exciting part, is that I can stop taking Metformin! It's been making me so sick because I don't need it! My blood glucose levels came back perfect! I can't believe I've been making myself feel awful all these months by taking these pills. I felt a flash of anger at the previous doctors who misdiagnosed me, but I let it go pretty quick. What is done is done, and I can get mad all I want, it still wouldn't change anything. I do feel very irked that if this had been diagnosed properly to begin with, we might have had success with a pregnancy by now, but I can't dwell on that for my own sanity's sake. Still.. Months and months lost.. 5 rounds of fertility treatments with all it's side effects, the stress, the hope and total devastation. There were many tears shed and many sleepless nights.. It's hard not to be upset, but I have to be positive. I have to.

She also said that since I was so severe, there is literally nothing I could have done to prevent the weight gain I've been dealing with over the last year. That made me feel somewhat better, but not really since I have to deal with the fact that I'm at my absolute heaviest currently and HATE IT. She said I could have literally starved myself to death and still gained weight. So messed up. Once we acheive that balance with the medication, the weight should start coming off. That was a releif to hear. I hope she is right.

After I learned that my thyroid gland was in my throat, something clicked in my head. For the past few years at least, I had been feeling a tightness in my neck that bothered me every few weeks. If I focused on it I could really feel it (like anything) but if I just pushed it out of my mind, it was okay. I'm not sure why it never entered my mind that it was something I should have checked out, it just felt like I had a little something stuck in my throat. It feels a lot like that feeling you get when you are trying to choke back tears. As embarassing as it is to admitt, I honestly thought it was because I was gaining so much weight my neck fat was just putting pressure on my throat. At the end of the appointment, I mentioned it, and she examined the area. She felt a bump there and scheduled an ultrasound to take a closer look.

That appointment was a few days later, and it went alright as well. It was rather uncomfortable, but doable. The tech spent quite a bit of time over the area where I felt something was off, but wouldn't really say anything.. I knew he couldn't, so I tried to be as still and relaxed as possible. He told me he took 65 pictures and that he was going to go talk to the radiologist to make sure that they had what they needed before I could leave. He was gone for about 15 minutes and came back in with a doctor. The doctor asked me several questions, like if I'd been feeling bad recently, what were my symptoms, had I been sick recently, and how long had this thyroid problem been going on. I told him I just found out 4 days ago and this was all new and I didn't really know what was going on. He asked me to lie back down so they could do the test over while he was watching. They took several measurements and listened to how the blood was flowing in my arteries. They had to switch ultrasound wands several times. I'm guessing for different kinds of measurements? At the end I said that since he was a doctor, could he tell me what was going on. He was still pretty vague and said that my doctor would discuss it with me further, but that they found no nodules, it was my actual thyroid gland that was swollen in the middle and on the right side. I asked why that was and he said there could be lots of reasons but that most likely it was because my TSH levels were in the 120s. He said I shouldn't worry and that my doctor will call me with the results and the next steps. A few days later I got the call with the official Hashimoto's Disease diagnosis.

So here we are now. I haven't been feeling too well lately, I don't feel a difference since I started taking the medication.. Well, I guess I take that back a little bit. The cramps have improved. I hardly feel them anymore. But everything else still feels the same. I can't wait to go get my levels measured on tuesday and see what needs to be done with the dosage. I can't wait to start feeling better.

I guess in a way I'm fortunate and should be thankful that this disease is very treatable and that in the long run, it will tie into our plans to have babies. I will have to be more closely monitered during a pregnancy, as there is a high risk of miscarriage if the hormone levels aren't balanced, but it's possible. Meanwhile, it's the waiting game again. Who knew that such a little gland could have such an impact on my health and fertility... Four days after I started the medication, I started spotting and it lasted for 15 days straight.. Needless to say, it's messing with my hormones already. I guess that's a good thing though? I wish I could fast forward time and be better already, but this journey is far from over I guess. I just need to focus on holding my head high and try not to let the finish line out of my sight. I can do this. I might be wobbly, but I'm learning to stand strong again.

It feels good to let this all out. Thank you, whoever you may be, for listening. I just wanted to add that if you try to leave a comment, it won't work.. =( My blog is broken and won't let anyone post comments. If you so desire, you can always reach me privately in a message on facebook.

I will leave here, at the end, a pasted description of Hashimoto's Disease if you would like to know more about it:

Hashimoto’s disease is a common cause of hypothyroidism (underactive thyroid). It is an autoimmune condition. Immune system cells attack the thyroid gland, causing inflammation and, in most cases, eventual destruction of the gland. This reduces the thyroid’s ability to make hormones.

The thyroid gland lies at the front of the throat, below the larynx (Adam’s apple). It is made up of two lobes that sit on either side of the trachea (windpipe). The thyroid gland makes chemicals called hormones that regulate many metabolic processes, including growth and the rate at which your body burns up energy. Hypothyroidism means the thyroid gland is sluggish or underactive.

Causes
Various conditions can cause hypothyroidism. One of the most common causes is Hashimoto’s disease, which is inflammation of the thyroid gland that reduces the secretion of thyroid hormones.

Hashimoto’s disease is considered to be an autoimmune disease. Immune system cells that normally defend the body against foreign invaders (such as disease-causing bacteria and viruses) attack the thyroid gland. About one in every 15 people is diagnosed with Hashimoto’s disease.

The condition is also called Hashimoto’s thyroiditis, chronic lymphocytic thyroiditis or autoimmune thyroiditis.

Symptoms
Hashimoto’s disease progresses very slowly over many years, so the symptoms may go unnoticed. The symptoms and signs vary depending on individual factors including the severity of the condition, but may include:

• Unrelenting fatigue
• Feeling the cold
• Constipation
• Swollen face
• Dry, coarsened skin
• Dry hair that is prone to breakage, hair loss
• Voice changes, such as persistent hoarseness
• Fluid retention (oedema)
• Sudden weight gain that cannot be explained by dietary or lifestyle changes
• High blood cholesterol
• Stiff and tender joints, particularly in the hands, feet and knees
• Cognitive changes, such as depression or forgetfulness
• Enlargement of the thyroid gland (goitre) 

Hashimoto’s disease reduces production of thyroid hormones
The thyroid gland makes two main hormones – thyroxine (T4) and tri-iodothyronine (T3). Two brain structures, the pituitary gland and the hypothalamus, regulate the hormones released by the thyroid gland. The steps in the process are:

• The chain of command begins at the hypothalamus, which prompts the pituitary gland to make a chemical called thyroid-stimulating hormone (TSH).
• The pituitary gland checks the amount of T4 and T3 in the blood and releases TSH if the T4 and T3 levels need to be topped up.
• The thyroid gland secretes T4 and T3 depending on the ‘order’ it receives from the pituitary gland. Generally speaking, the more TSH the thyroid receives, the more T4 and T3 it secretes.
• The pituitary gland may order the thyroid gland to make T4 and T3 but, in the case of Hashimoto’s disease, the thyroid gland can’t deliver.
• The immune system creates antibodies that attack thyroid tissue. The thyroid gland becomes inflamed (thyroiditis) and thyroid cells become permanently damaged, which hampers the thyroid’s ability to make T4 and T3.
• In response, the pituitary gland secretes more thyroid-secreting hormone (TSH).
• The thyroid may enlarge (goitre) as it attempts to obey the pituitary gland.

Common complications
Complications of untreated Hashimoto’s disease may include:

• Goitre – the thyroid gland enlarges. In severe cases, the throat looks as if a tennis ball is lodged under the skin. Occasionally, a large goitre can interfere with breathing or swallowing.
• Emotional problems – low thyroid levels can increase the risk of depression and libido problems, such as reduced sex drive. 

Treatment
With treatment, the outlook for most people with Hashimoto’s disease is excellent. Treatment usually includes medication with the synthetic thyroid hormone (thyroxine). The doctor will recommend regular blood tests to monitor your thyroid hormone levels to ensure they are within the recommended range.

You will need to take the medication for life. Medication does not cure the condition, but helps maintain normal thyroid hormone levels. The symptoms will return if thyroid medication is stopped. Surgery may be required if the enlarged gland causes pressure symptoms.
 

break

I thought posting on my blog daily would help me stay on track with all that's going on, but I honestly feel a little overwhelmed right now. I feel there are other things that I need to focus on currently that have nothing to do with what I'm eating, so I'm taking a break.. A break from what, I haven't truly decided yet, but it's the best I can come up with right now.

Day 13

There is a line I read about this diet that I truly understand and believe after the last few days; because I lived it.

"Eat anything you like. Go ahead and have Pizza, Burgers, Chips, whatever your heart desires. You will come to learn how much you really enjoy these foods... not much at all."

Needless to say, I had a little "break" from Paleo the last few days (and not proud of it, but not giving myself too much hell either) and I TOTALLY feel a difference in how I'm feeling. I kind of had a revelation this morning while driving to town with DH and feeling absolutely wretched. The last 48 hours I had had - (another) cheeseburger basket, a few beans and olives, and a few bites of cold pizza with processed meat, and my stomach felt turned inside out. Sure, it tasted good at the time, but how do you really justify that when the same or next day you feel horrible? I was bloated, and had stomach cramps and just.. not good.. stuff you don't wanna know! When I ate strictly Paleo I had none of that. Weird? No. I'm a believer that this diet makes a difference on what happens on the inside. It truly helps from the inside out.

So here I am, Day 14, and getting inspired to get back on track. I need to go fruit/veggie shopping, that'll help, but I want to feel good!

Today was my worse eating day since I started this diet. I had absolutely nothing to day ALL day until 6 pm. We were on the go ALL day and I was getting super grumpy from not eating. we had some tacos on the way home and I inhaled them.. Not feeling so great right now. Lesson learned. Must keep and apple and nuts in my purse.