Long Time, No Post

I apologise for the lack of updates. A lot of stuff has been going on and I've been very distracted and preoccupied.

I missed my sonogram a few weeks ago; I'd come down with a nasty cold and couldn't go. So the sonogram has been rescheduled for the morning of my birthday (November 10th). Not exactly the birthday present I was hoping for, but c'est la vie. My symptoms have been about the same. Being sick kind of distracted me from my neck lumps so I suppose that's slightly good in a way. Also having gotten my tongue pierced last week has made me focus more on my tongue than anything else. So I suppose these physical distractions can be sort of good.

In other news, I have the most amazing boyfriend as of October 14th. He is the kindest, sweetest guy I have ever been with and we are so much alike it's crazy. He's planning to bring me back home to WA in January and I'm pretty damn excited about that. I have never been happier with anyone else and that's no exaggeration.

I think my next post will probably be on my birthday after my sonogram, either that or when the results come back. My mind has been preoccupied, but I know I'll get nervous again.

Probably.

I saw my new general practitioner today and I love him already. He is helping me to finally get some answers. His theory is that one of my nodules probably became dominant and that is why it's pressing up against my neck. Of course, we can't be sure without the ultrasound. The only slightly alarming thing is that apparently my blood pressure is surprisingly low. That's unusual for hyperthyroidism; I'm wondering if maybe there's something else going on too.

I am very happy that I have a doctor who is not only local but respects me and everything I bring to the table. No more doctors judging me by my clothes or philosophy on life. That's the way it should be and I am very happy and satisfied. Hopefully everything will be fixed before 2012. I'm hoping that with a new year comes a new clean bill of health.

I'm not too worried about malignancy anymore because I know I'm going to be treated soon no matter what the case is. I'm also not too worried about my immediate danger because my doctor said the shaking was probably from my having taken Haldol, which can apparently cause a Parkinson's-like condition. I have not shaken in days and I've been off my Haldol for a while so I think I'll  be fine.

Breakthrough?

I went to the ER yesterday after all that. I spent about 4 hours there and they referred me for an endocrinology appointment today. In the ER, they took some blood out of me and looked me over a little. The doctor said my eyes are starting to bulge a little bit; it's in early stages so it's not very noticeable.

Today at my doctor's appointment, my doctor compared all of my blood results and decided she wanted another test because my symptoms and levels weren't matching up (the tests said normal while I presented as otherwise). I have a sonogram ordered for the 6th of October and I'm scheduled to see my endo again in December, but I predict she will want to see me sooner. I've been shaking again and a friend of mine had to walk me to the subway station after class; I was pretty embarrassed but I'm glad I'm making friends. Right now I'm just going to eat and drink something and try and relax, maybe my shaking will stop again. It is already stopping which is a good sign, but I want it to keep stopping.

I'll probably report back soon about my symptoms. I don't know if they're going to come back again and, if so, how frequently they will be coming back.

Whole Lotta Shakin' Goin' On

My entire body's been trembling since yesterday and I don't know why. I usually have a tremor in my hands, but I feel my head shaking and my legs shake uncontrollably sometimes when I'm standing up. I don't know what to do. I have no doctor. I was talking to a family friend and she suggested to just truck myself over to my local ER. I just might do that, considering that my local ER is amazing.

My muscles are like Jell-O. I feel like I can't control my movement anymore. I'm clumsy and can barely type right. I'm sweating and my hair is still falling out like crazy. I need help already. That's it. I'm ending this post and calling the doctor and/or going to the ER now. This is ridiculous.

Losing My Head (Actually, Just My Hair)

I started noticing it a few days ago. I am wondering if it could be related to having dyed my hair a few weeks ago, but dye couldn't cause THAT much hair to be lost...could it? It's incredibly disconcerting. I do all this work to try and grow my hair out and now it's falling out. I'm really hoping it's the hair dye, but I do know that hair loss is a common symptom of hyperthyroidism, and I am losing hair in small patches on other parts of my body, so it is very possible that my thyroid is doing this.

I have horrible stomach cramps today and am accepting the diarrhea that come with it, but it hurts so bad I've been sweating. Thyroid disease really does affect everything. That's the worst part. My stomach is fucked up, my temperature is fucked up, my cardiovascular system is fucked up...Now that Irene is gone, I am going to be more vigilant about calling doctors since offices will be opening again. Because this hair loss is the last straw. I've had it up to here, not gonna lie. It's embarrassing, as well as debilitating. Really embarrassing.

If anyone reading this is familiar with thyroid disease and hair loss, could they be connected in what I'm experiencing?

Symptoms and Signs

So basically, I'm done with my doctor. I received my last blood test results and my TSH is far away from normal. It's worse than it was a few months before, too, granted only by 0.008 points, but changes like that should not warrant "no treatment", especially when those hormone levels are worse than before. Unlike hypothyroidism, when left untreated for a long time, hyperthyroidism CAN KILL YOU. That being said, I am still EXTREMELY uncomfortable.

I still have neck lumps. I still have ear pain. I still have trouble talking sometimes. My AC broke, I sleep with two fans on, no covers, minimal clothing...and I still feel like I'm in an inferno. My heart started pounding last night in my sleep. IN MY SLEEP. I've had my share of stomach problems; they are getting far more troublesome than they have been. I am spending way too much time in the bathroom. Can there just be like ONE day where I can be free from all this? I beg and I plead and nothing ever happens. School is starting in 12 days and I can't live like this. What makes anyone think I can focus in school when I can barely focus on anything else but what happens to me physically? I'm incredibly worried. Worried I'm not going to make it. I'm terrified I'm going to fail out. They didn't want me sick in school but it's going to happen anyway. And they better not turn me away at that door. I'm not letting my health interfere with my productivity any more than it already does. I'm not going to let people boss me around.

I don't care if I'm held up on the phone for hours. I'm calling the ENT department at my local hospital. Their ER is the best I've ever been to and I believe they're going to give me good treatment and I think everything will be fine. I'm off the whole calcification theory thing because I can't trust my doctor, so essentially I'm back where I was a few months ago: clueless and scared. I keep putting this off but I know I can't afford to anymore. It's for my own good. I need to stop being scared and just get it over with already. Because clearly, I can't function like this no matter where I am; home, school, the supermarket...wherever I am, my thyroid goes with me, and there's nothing I can do about it.

I know the thyroid is an extremely complicated organ and it can fuck around with you in so many different ways, and often people don't know what to think, even doctors. But I still believe there's an answer for me out there. There's always an answer for everything.

A Dedication and a Potential Prognosis

Before I get into my post for today, I want to dedicate this post to a little 8-year-old boy by the name of Leiby Kletzky. If his name hadn't been spread all over local news because of his being horribly murdered, I wouldn't even know his name. A few weeks ago, somebody abducted him off the streets of Brooklyn, drugged him, suffocated him, and dismembered his body. When I first heard the story, it was like a knife had hit my heart. For me, it wasn't like just any other murder story on the news. This was a child. A Jewish child. I was once a Jewish child in Brooklyn. I didn't know what true danger was like, and that's how it should be for any child, anywhere. I said a silent Mourner's Kaddish for Leiby, having not prayed in several months because I'd lost my faith. Because I have strong Jewish roots, and because I am very concerned with the welfare of children, wanting to go into pediatric nursing and all, this story really broke my heart. Condolences go out to the Kletzky family. I am dreadfully sorry that this had to happen. My half-brother is a young child too, and although I can't be in his life right now, I hope he is always safe and in good hands (to the extent that he can be, anyway.)

Anyhow, let's get back to my condition. My doctor called with the results from my last sonogram and blood test. She simply says, "They are benign, hormones are normal. No treatment." I'm thinking, something isn't right here. I know how I feel inside, and I know my hormones are overactive. With help from my social worker and threatening to switch doctors, I caught her in a lie; my hormone levels WERE elevated, but they did not need to be treated. I also got more details about what's growing out of my thyroid. She believes they are more cystic than tumour-like, but are significantly calcified. I have no idea what she meant in terms of calcification or how it happens, what it can do to me, etc., but I need to get these things taken care of, because I am dreadfully uncomfortable. They interfere with talking sometimes, and last night, they interfered with my sleep.

I really don't know if I can trust my doctor anymore. I may make the switch in terms of general practitioners, but I need to see an ENT about the calcification, because she kept telling me that she herself couldn't handle that sort of thing, because she wasn't qualified. Now, how would I know that she's right about calcification? I don't know. It just makes sense to me. Besides, she was not the one who analyzed my sonogram, or took it, for that matter. Regardless, my next step is to see a specialist and obtain my records. Hopefully I can get this sorted out.

Hungry Hungry (Not) Hippo

My appetite has been huge lately. I've eaten more in one day than I can remember having eaten in one day ever, even on Risperdal (an anti-psychotic, used to treat bipolar disorder, caused increased appetite). But, unlike with Risperdal, I am still losing weight. My mother told me it's a sign of illness. No shit, sherlock. As if I didn't already know I was sick. No progress has been made yet in trying to get my prognosis out of my doctor, but after the holiday is over, I will keep trying.

I think when I'm well again, I'm going to make some lifestyle changes. I want to start working out. I've already started eating healthier, but I want to continue doing it after I get better. I can't use my illness as the only excuse for taking better care of myself. Because I'll stay healthy if I keep doing it. I hope to try and keep my junk food habit at bay by learning to like produce. And I'm well on my way to that goal. My mom's cream of broccoli soup is to die for, and I like homemade strawberry smoothies (but maybe I need to put less sugar in them). But right now, I really need to stop talking about food and try and exercise some self-control. My metabolism (and all of my other bodily processes) may be extremely fast now, but it's not always going to be this way, I'm sure of it.

Time to finish watching the Independence Day festivities on TV. Sure, it's the same old thing, but it helps keep my mind off of food.

Truckin' it Out

I've been getting more symptomatic by the day. I've been feeling a lump on the left side of my neck when I swallow, the lymph node on the left side of my neck under my jawbone is painful and rock solid, and I've had dull, intermittent pain in my ears. I thought this was an ear infection, but it's not that kind of pain, plus, I feel like I usually do otherwise. After a lot of anxiety, I finally called my doctor to see what was going on with my sonogram results. They're not in yet. It's incredibly frustrating because I've been so symptomatic and there's not really a magic pill I can take to get relief. That's reserved for those thyroid patients who only have a simple hormone imbalance. Like my mom. I am so jealous that she can just take one pill and be fine with her thyroid; then again, a simple case of hypothyroidism is far less difficult to treat (and diagnose) than the stuff I've got going on.

Now that I've dropped out of summer school, I can blog a lot more frequently. But don't panic; I'm still going back to school in the fall. It's just that I don't want to deal with a professor who makes me cry in front of the whole class and refuses to turn up the AC. I'd say the puddle of sweat I left on my chair is my way of saying, "Kiss my ass." Psychologically (and physically), I don't need to deal with that. The disability department agreed that I wasn't in any physical shape to be in school right now anyhow, and told me I need to take the summer to get my health in check. It would be much easier if I had my sonogram results back. But now I'm sounding like a broken record.

I think I might take a nap now. I haven't been sleeping much at night these days.

Feelings

Today I'm mainly going to talk about feelings. But first a quick note before I start today's entry: If my condition turns out to be malignant, it is extremely treatable; surgery on my thyroid will take care of the problem, but we're still not sure if I need it yet.

On to today's topic, then. I guess the main thing I've been thinking about lately is, "Why is this happening to me?" I take pretty damn good care of myself. I quit smoking 3 years ago, and even then I was only on a pack a week. I try to eat healthy; I'll admit I'm a bit of a junk food junkie and candy afficionado, but I (almost never) eat candy for breakfast. So where did I go wrong these past 19 years?

Maybe it's payback. Payback for being a b-word (I don't use profanity here because I want to keep this PG rated) to people sometimes. But then again, the reason I am one is often because of my condition. Maybe it's what I get for my behaviour problems as a child. I was aggressive and insubordinate and got expelled from my private school in 3rd grade. Maybe it's some kind of curse. I have the best of intentions no matter how angry I get. I'm not a bad or evil person. So why me?

My mom says sometimes it's just dumb luck. Luck? Generally that word is associated with positive things. A fluke? Again, associated with the positive. I want to know why this is happening but nobody is giving me a clear answer. Just "dumb luck". So I'm pretty upset about that right now. I just wish I knew what the heck happened down the road that I ended up like this.

On a positive note today, I had orientation for college today. The room was highly air conditioned, and I was the only one who didn't complain that it was cold. Although I was comfortable temperature-wise, it was very boring, but I plan to look at the materials they gave me at home. Now I'm just relaxing. Gonna go have a glass of ice water and try and keep my mind off what irks me day in and day out.

Introductions

I was inspired to start this blog by someone I used to know. I am going through a lot and I think it's important that I share my experiences to let people better understand thyroid disease. I, personally, am in a very rare situation, particularly for a 19-year-old girl. These are my stories.

First, let me explain the thyroid gland. The thyroid is an endocrine gland located in the lower part of the front of the neck. Its main job is to regulate metabolism through secretion of hormones. These hormones not only affect metabolism, but they affect all processes of the body. So, really, thyroid disease is systemic symptom-wise. Because of these systemic factors, thyroid disease can make you quite miserable all over.

My struggle started with hypothyroidism, which I believe I had suffered from for quite some time before diagnosis last September. Hypothyroidism is a condition in which the thyroid does not secrete enough hormone. Some symptoms I experienced in this phase were weight gain, cold intolerance, fatigue, and high blood cholesterol. Upon diagnosis, my doctor decided to order a thyroid sonogram (ultrasound) to make sure nothing potentially serious was going on. And believe me, I did not like the results of this sonogram.

My sonogram revealed several complex cysts; in other words, they are abnormal growths that are partially solid, partially liquid. But because of the solid components, they are classified as a type of tumour (ugh, yes, I said the "t" word) and have a chance of malignancy (cancer; ugh, it's the "c" word), particularly in people as young as I am. Soon after this discovery, my symptoms completely changed.

Around February of this year, I started to develop hyperthyroidism, which is an overactive thyroid gland, secreting more hormone than usual. My symptoms have included weight loss (20 pounds in a month and counting), extreme heat intolerance (the worst), heart palpitations, muscle weakness, increased digestive activity (which ain't fun, to experience or talk about), and restlessness. This has been going on for four months now and is getting progressively worse. I have begun to feel lumps in the front of my neck, particularly on the left side, mostly when I swallow, but that is only occasionally. I also have what doctors call cervical lymphadenopathy, which is swelling of the lymph nodes (glands) in the neck. My doctor decided this was a bad sign and ordered another sonogram.

I had my sonogram done roughly three weeks ago. I am still waiting to hear back from the doctor. I am getting to be so miserable that I am considering just plain calling, but I'm incredibly nervous. Naturally with cystic tumours, I have every right to be nervous. But as a friend told me, it's better to know what's going on than to psyche yourself out thinking about the possibilities. Yay friends.

Over the months, I have been to some crappy doctors, which have made me even more frustrated about my condition. But my general practitioner is amazing. She is worth the trip to Long Island to go see her (I live in NYC). Thyroid disease is a very complicated subject, even among doctors. I think the main reason for this is because the symptoms are systemic, which would cause a crappy doctor to think that something else was going on besides a thyroid problem and completely miss the big picture rather than testing the blood for thyroid hormone balance (a TSH test). This, in turn, creates a lot of negative feelings when seeing a crappy doctor.

The feelings don't just come from crappy doctors, take my word for it. I experience a lot of anxiety, depression, worry...you name it, I feel it. I hate feeling disabled; my condition prevents me from doing many things, and I want to be as free as I can be. I'm 19 years old. I have the right to be a free spirit and a free body.

I'm going to wrap this up with a little more background about my health history. I also suffer from asthma and obstructive lung disease, COPD generally, chronic bronchitis specifically. As if this didn't make my life any easier, I was diagnosed with bipolar I disorder at age 15 (I am on great medication so you really can't even tell) and obsessive-compulsive disorder (OCD) at age 7. But I try and live my life and not let anything stop me. Thus concludes my introductory post. I hope you all keep reading and get edumacated (ha. ha. ha.).