I woke up at 8 am, and I already feel like I haven’t slept in weeks. It’s noon. I haven’t written in days, and though I spoke to several people yesterday my brain is so foggy I can’t remember a thing I said to any of them. My latest test results show my Graves disease is improving. But if I’m getting better, why do I feel so much worse?

What is Graves Disease?

Graves disease is a bitch, and it’s trying to ruin my eff-ing life! This of course, is the non-technical answer to that question.

Basically, Graves disease is an auto-immune condition in which your body attacks your thyroid. Symptoms of it include nervousness, shaky hands, itchy skin, aggressive behavior (Moi, aggressive? No way!), fatigue, trouble sleeping, rapid and irregular heartbeat, hair loss, diarrhea (sexy!) and weight loss.

Some people with Graves also develop a secondary condition called Graves’ ophthalmopathy, where their eyes start to bulge out. This condition is not cute and can be emotionally devastating.

Anyone who’s has seen Young Frankenstein has a good example of what this condition can look like. Marty Feldman, who played “Igor” in the film suffered from Graves disease and Graves opthalmopathy.

Marty Feldman's bug-eyed look, courtesy of Graves Eye Disease

Most Graves sufferers will also develop a goiter.

Goiter. Hmmmm. Isn’t that a word as ugly as what it looks like? Even the sound of it is ugly. And yes, I had and still have one. Ugh.

When I was first diagnosed with Graves in 2009, my neck looked like I had swallowed two peaches, and you could easily see my swollen thyroid glands on either side of my neck. It looked like my neck was wearing headphones or something.

Today, my neck looks a lot more “normal” but is still larger than the size it was say, three or four years ago. Obviously during the time my neck was the largest, I refrained from a lot of social activity as it’s not a good look. The photo below shows what my neck looks like today.

My ever optimistic [SARCASM!] doctor doesn’t think it will ever fully resolve on its own, but I have faith that as I progress into remission it will continue to decrease in size.

How Do You Get Graves Disease?

There are many theories on what causes Graves disease, though the exact cause is not known. Many researchers agree that stress can play a part in its onset. The last decade of my life has been extremely stressful, so I believe Graves crept into my life somewhere during this time.

In 2001, I was the mother of a six year old, a one year old and a newborn.

In 2003, I had a very stressful experience involving a close relative. This experience was so emotionally traumatizing…I felt after the experience that I was changed forever somehow, in the core of my being…like I had reached a turning point in my life. I may write more about this at a later date…

In 2007 Best Buy accidentally lost 80% of my data (writing, book research, photos, videos, etc) when my computer crashed because of a non-hard drive related issue and I took it to their Geek Squad for repair….something I have to take at least partial responsibility for as I should have been making back ups of all of my files.

The same year I got into fisticuffs with a neighbor because her bad ass grand kids stole some of my children’s toys off of my back porch. I know, real mature, but I did not instigate the altercation, m’kay?

The police got involved, and since she broke one of my fingers in the scuffle (ratchet ass old ho!) she had to go to jail and then to court. My children and I also had to go to court and having to put them through that was extremely stressful for me.

Anyway…

And then…

In 2008, after not knowing whether my father was dead or alive for over twenty years, my mother…locates a young woman on Facebook with my last name. Being that my last name is unusual, she sent a message to the young lady asking her if she was related to my father.

Lo and behold, she was.

That young woman turned out to be my younger half-sister…who my father had been raising, along with two other half-siblings while I was growing up longing for his presence, and thinking that, wherever he was in the world, he probably just didn’t have what it took to be a father.

So imagine my surprise to find out that he not only has what it takes to be a father, but that he’d rather just not be one to me. In fact, he would have preferred not to have been found at all. Ever.

This treatment from the person partly responsible for me being on this planet also added to my stress.

I made a two-part video discussing this situation, Growing Up the Daughter of a Serial Father, to talk out some of my emotions about this and to help spread awareness about how growing up without a father can devastate young women.

Over this last decade, I did not experience all of the symptoms of Graves (like the diarrhea), but I did experience slowly increasing irritability and fatigue, which at first I blamed on being a writer and mother of three (either one of which is enough to drive anyone crazy).

As my disease progressed, I noticed some hair loss and that my neck was swelling, and that I was losing weight. Weight loss, for most people is a welcome symptom of the disease. Unfortunately for me however, I’ve never had much weight to loose!

In the South, I’m what’s considered “small boned.” Growing up, I was always skinny, frail and small for my age.

I was so small, older relatives like my aunt Big Maggie (RIP) used to tell me with a chuckle, “Gal, you ain’t big as a minute!”

So small, bus drivers in Brooklyn would let me ride for free because my great-grandmother would tell them I was six–(at the time kids six and under rode NYC buses for free).

She did this until I nine.

As the weight fell off, my fatigue and irritability also increased. I became easily enraged and started yelling at my kids over the smallest things. Then things started going downhill fast.

At one point, I was too tired to get out of bed for more than four hours at a time.

Months later, my out of bed time dwindled to 20 minutes.

By this time I had stopped checking my emails. Stopped answering phone calls. Stopped writing. Stopped blogging. I even stopped going outside.

And then I stopped getting out of bed at all.

During this time days passed of which I have no memory. In the few moments I remember from the time, I was severely depressed and was constantly crying over nothing when I wasn’t sleeping.

Depression is not widely acknowledged by doctors as being an actual symptom of Graves, but I can tell you that I definitely suffered from it and so have many others who are frustrated at how this symptom is sometimes ignored by physicians.

During my descent into Graves Disease Hell, I experienced depression so severe I’ve been afraid upon waking that I wouldn’t make it through the day alive.

According to some reports I’ve received from family members, I also stopped eating–sometimes for days.

In this state, slowly degrading into a shell of your former self who doesn’t eat and sleeps all day, life can feel like an overwhelming weight pinning you underneath it. I felt like I was in a hole with no way out, with the light at the top slipping farther away from me each day.

This was in late November 2008.

I was suffering from full blown Graves Disease but did not know it, as I hadn’t seen a doctor in years due to a lack of health insurance.

Sometime during the first week of January, 2009, I was rushed to the hospital by ambulance and induced into a coma to keep my heart from giving out because my heart rate was so high. I was in the midst of a thyroid storm and almost lost my life.

I received excellent care at the hospital and up until recently, almost three years after my thyroid storm my Graves seemed, at least to me, to be improving–which makes it hard for me to understand why I feel so horrible right now.

Is There a Cure for Graves Disease?

Since getting out the hospital, I’ve spent much of the time I would usually spend writing, blogging or networking trying to research my way to a cure even though modern science tells us there is no cure for Graves disease. I don’t believe it.

I believe, due to lack of research funding, there’s just no cure available right now.

Most doctors who treat Graves believe there is only one way to “fix” it–by removing the patient’s thyroid through surgery or by having them swallow an iodine pill in a bio-hazard level setting, then placing the patient on thyroid replacement medication for the rest of their life.

This “treatment” is barbaric and does not heal the root of the problem because it destroys a vital organ which isn’t even broken. You see, in Graves disease, the problem isn’t actually the thyroid–it’s the immune system. And often, having the thyroid removed makes the eye disease worse.

No thanks!

Destroying my thyroid was the only option given to me by my ever optimistic [SARCASM!] doctor at the hospital. It is also the only option she gives me at every visit, every six weeks.

For several reasons, including the primary reason that destroying my thyroid won’t heal the root of the issue, I’ve decided that this “option” is not right for me….at least not right now.

And, because of several negative experiences with my current endocrinologist and with other physicians in the past, I felt a strong need to be proactive in my own healing, so…crazy as this might sound, and with no medical training…I decided to devise my own healing plan to compliment my doctors prescribed medications.

I DO NOT advise anyone else to do this!

Part of my skill set as a writer is the ability to do find in-depth research, and this is one of the main reasons I felt empowered enough to attempt this. And over my years of exhaustive research a lot of experimentation (on myself!) has also been involved–something else I recommend that people do not do!

It took about a year of research (some of which I started in the hospital) to come up with what seemed like a good initial course of action to battle my disease, and in 2010 I began implementing it.

My Graves Treatment

First, I have to say that I strongly advise people not to blindly follow any of my advice. I am only putting this information out there to describe what has worked *for me*.

Everyone’s body is different, and everything cannot work for everyone, especially if you take other medications for other ailments you may have, so again…please know that although I am sharing parts of my treatment I advise anyone who thinks about pursuing some of the avenues I have to please print and take this blog entry to your physician and discuss any parts of my personal treatment you’d like to try with your physician first!

Now…some details of my treatment, along with my latest test results.

My partly natural Graves disease healing protocol consists of:

• getting 8-10 hours of sleep a day (to let my immune system “rest” and get a full dose of healing sleep)
• getting at least 45 minutes of exercise in at least every other day (usually something calming like yoga, Tai Chi or Qi Gong, weight lifting to prevent muscle loss, or something dance related for the fun of it)
• getting sunshine (which for me means going outside walking, climbing trees, riding bikes with my kids, etc.)
• eating properly (lots of fruits and veggies, reduction of my bread and sugar intake, and cooking lots of home-cooked meals–which I’ve done for years anyway, only now I’m extra careful about using any refined products)
• taking herbs like bugleweed, motherwort and lemon balm
• taking supplements like iodine free vitamins in addition to my prescribed medication
• and last but not least, meditation

Why meditation?

I think there is some sort of mind/body feedback loop involved in healing immune disorders, and that as my body heals so does my mind.

I am working on both as part of my healing method, even though my ever optimistic [SARCASM!] doctor doesn’t believe in any of that mumbo jumbo.

She acutely told me to stop doing yoga when I was first diagnosed (which I didn’t), and upon telling her I wanted to change my diet because I believed it would help my condition she replied, “Diet doesn’t have anything to do with Graves” (which it does).

When I’ve brought up the subject of adding herbs to my treatment, she flatly told me to stay away from them and regularly tells me things like “you have the type of Graves disease that doesn’t go into remission” (HUH?). When I told her I was thinking about getting acupuncture (which has helped some Graves disease patients) she replied, “I don’t think it will help, but I don’t see what it could hurt.”

Under these circumstances, I felt it best NOT to tell my doctor the full details of my healing method.

I do not advise any other person in the world to keep details like this from their physician, but because my doctor is behind the curve when it comes to holistic healing, there is a serious communication block between us and as my treatment progresses I will likely be switching doctors to one who feels more like a partner than an adversary in my quest for total health.

And now…drumroll please…my last four test results, in a handy dandy chart!

People who aren’t into the insanely fun and zany world of endocrinology are not going to understand what these results mean, but those who are will immediately understand that, according to the numbers my Graves seems to be improving at least a little.

It’s hard to see them in the chart, so my numbers per month are below–it’s helpful here to quickly point out the “normal” ranges of these numbers, because the severity of Graves is usually determined by how far outside these “normal ” ranges your numbers are along with some other diagnostic factors.

Normal ranges:

Free T3: 2.3 to 4.2 (the higher your numbers are above this, the more severe your hyperthyroidism)

Free T4: 0.7 to 2.0 (the higher your numbers are above this, the more severe your hyperthyroidism)

TSH: 0.3 to 3.3 (the lower your numbers are below this, the more severe your hyperthyroidism)

Test Results (Taken Every Three Months)

March 14, 2011: Free T3 – 5.3, Free T4 – 1.37, TSH – 0.005

June 7, 2011: Free T3 – 4.0, Free T4 – 1.03, TSH – 0.005

August 29, 2011: Free T3 – 3.3, Free T4 – 0.87, TSH – 0.005

November 9, 2011: Free T3 -2.4, Free T4 – 0.67, TSH – 0.275

These are just the results for three of my levels. My doctor only tests these three, and a few other minor levels. When I look for a new doctor I am going to try to find someone who does more in depth testing.

Supposedly, once all of your levels are within the normal ranges, you are what’s called “clinically euthyroid” which basically means your thyroid is behaving normally under current conditions and medications.

In light of the change in my hormone levels (especially the improvement in my TSH level), I hope my current effed up feeling (like I’m walking underwater or something) is my body just adjusting and attempting to re-balance itself.

My doctor has also reduced my prescribed medication in light of my latest test results, so this adjustment in medication could also be one of the reasons I feel like crap.

But I can’t be sure. I’m not a doctor, and I’ve never been through this before.

I’m just someone who, like many Graves disease patients, feels frustrated at the lack of real treatment options available and felt desperate to take matters into my own hands.

Despite Graves being the number one cause of hyperthyroidism in the United States, there’s not a whole lot of personal stories about it on the internet so Graves can feel like a really lonely condition to have.

Especially when so few people understand how devastating the symptoms can be or how hard it is to discuss it with people as most people don’t even know what a thyroid is.

So this is my contribution to the Graves disease stories on the internet, and I hope this blog entry helps someone in some way.

Although I’m not sure what’s going to happen next in my treatment because I need a break from life to figure out how to adjust my supplements accordingly, I do know I need to start the new year with a new doctor, and together we can take the rest of my treatment from there.

In the meantime, if you believe in the power of prayer as I do, please pray for me as I step out on faith into continued recovery and I promise to keep you all updated.

Thank you reading this super long entry!

Do you have any advice or wisdom you’d like to share about living with and surviving Graves disease?

Do you have Graves disease? What treatment option did you choose and why?

Do you have any questions about Graves disease or my treatment? I’m not a doctor but I’ll do my best to answer.

Other comments? Leave ‘em below–I’d love to hear from you!