I have been battling Graves disease for almost five years now.
A couple of days ago I would’ve thought the term “battling” was a hyperbole of the grossest proportions. Sort of like when people say, “That ice cream was out of this world!” As if an alien had handed them a triple-scoop cone with sprinkles. It just wasn’t true.
Now I’m not so sure.
Five years ago at my annual, my OB/GYN noticed that my throat was visibly swollen. She referred me to an endocrinologist who then performed a barrage of tests that I have since managed to successfully block out. (Doctors and hospitals rank up there for me with being buried alive or drowning.) I was told that I had a nodule in the left lobe of my thyroid that was benign and was diagnosed with hyperthyroidism.
This was not good.
Thyroid hormone controls virtually every function in the body. Hypothyroidism is more common and occurs when there is a lack of thyroid hormone present. Without the proper amount of hormone, everything in the body slows down, including metabolism. Weight gain is often a symptom, as are depression and lack of energy.
Hyperthyroidism, is, as you might expect, just the opposite. Having too much thyroid hormone, is a little like being on speed. Actually, I’ve never been on speed, so maybe that’s not a fair comparison. It IS like having too much caffeine, though.
At first glance, this may not seem so bad. Weight loss – how can that be bad? And constant energy – cool! But it’s not cool. It’s basically as if your body was eating itself. The weight loss can be associated with bone and muscular atrophy. The energy is not the good kind. It’s nervous energy, which, in my case, translates into anxiety and even paranoia. And it’s constant, until I crash from sheer exhaustion.
I have always been a perfectionist and a bit OCD (not clinically), but when I’m hyperthyroid, I almost can’trelax, no matter what I do. T and I will sit down to watch a movie and I’ll get up to straighten the centerpiece on the coffee table. Then I’ll place the remote precisely parallel to the seams on the couch. Then I’ll adjust my water glass so that it is perfectly centered on the coaster. Then I’ll tug at the cuffs on my sleeves until they are completely even. I just can’t sit still. It’s not relaxing for T and it drives me nuts, too.
Hyperthyroidism can also cause increased heart rate, tremors and eye problems. The muscles behind the eyes can swell and push the eye forward, giving one the look of perpetual surprise. Do yourself a favor and do not Google “Graves disease eyes” images. Fortunately, I haven’t experienced this symptom (I just ran to the mirror to check), but I do get dry eyes and sometimes my vision blurs when I’m sitting at the computer.
Oh yeah, and I sometimes get night sweats. And did I mention that I feel constantly stressed out about everyday things?
And the best part? It’s an autoimmune disease, which means my body has ceased to recognize itself as a friend and is attacking perfectly normal – and even necessary – tissue. I’m “battling” myself.
This is so classically “me” that I can’t even begin to tell you how appropriate it is for my life.
My conventional doctor told me there were three options:
1. Radioactive Iodine. You swallow a capsule, the radiation knocks out your thyroid partially or completely and you are on synthetic hormones for the rest of your life.
2. Surgery. The surgeon cuts out part or all of your thyroid and you are on synthetic hormones for the rest of your life.
3. Medication. You take a thyroid blocker and try to regulate that way, but more than likely will be on the mediation for the rest of your life.
None of these options sounded all that appealing to me.
So, I pursued other solutions. I tried eating lots of kelp. I tried acupuncture. I tried chiropractic care.
Nothing worked, so I finally had to go on the meds. Those blockers did work…a little to well. They dropped me so low that life barely seemed worth living. I was tired. I was constipated. I was depressed. I was cold. I gained ten pounds.
My conventional doctor thought I was fine because my levels were in the “normal” range. They, however, were in the low end of normal and this obviously wasn’t right for me. So I stopped the meds and agreed to have a blood test in a couple of months.
I yo-yoed back and forth like this for a while – get on the meds, go low, get off the meds, go high – until I finally started seeing a naturopathic doctor who helped me find a little stability through diet and exercise. The time between swings got longer.
This last time, I maintained a normal amount of hormone for over a year – the entire time T was gone, which is pretty amazing when you think about it since stress can be a trigger.
Then yesterday, I went back to get the results of my most recent blood work.
I had spiked again.
To give you an idea, normal range for T3 (the “biggie” hormone) is 2.0 – 3.5. Mine was 4.4.
This didn’t really concern me until my naturopathic doctor told me several things:
1. I should have a(nother) bone density test.
2. I should get a(nother) eye exam. (I just ran to the mirror again.)
3. I should see another endocrinologist to discuss next steps.
Wait. What? I was under the impression that we were managing this. I know what the “next steps” are and I don’t want to take them.
I quickly imagine the apocalypse, which somehow strands me on a desert island where I have no access to the synthetic hormones that I will need after my radiation/surgery and I have to either start drinking pigs’ blood or die a stressed out, lonely death after replanting all the palm trees in impossibly straight rows.
Next, I think, Good thing I have medical insurance.
Finally, I think, This sucks.
Because it does. I have a feeling that the “next step” is going to involve radioactive iodine and hormone replacement therapy. This is the conventional way and my last hope is sending me back into the world of conventional medicine.
I’ve been set adrift.
And, as tired as I am of bouncing around like a hormonal jumping bean, I still don’t know that I’m ready to throw in the towel and destroy or remove one of my glands. THE gland, you might say.
Now, you might be thinking, “What’s the big deal? The chances of getting stuck on an island in a world where no pharmaceutical companies exist is pretty slim.”
True. But peep this. These are the “after treatment precautions” (as listed on endocrineweb):
- You should sleep alone for 3 to 5 nights after treatment, depending on the strength of your dose.
- Personal contact with children (hugging or kissing, for example), should be avoided for 3 to 7 days, depending on the strength of your dose.
- For the first 3 days after treatment, stay a safe distance away from others (6 feet is enough). Avoid public places and drink plenty of water (to encourage the removal of radioactive iodine through your urine).
- For the first three days, do not share items (utensils, bedding, towels, and personal items) with anyone else. Do your laundry and dishwashing separately. Wipe the toilet seat after each use. Wash your hands often, and shower daily.
I’m sorry, but anything that requires you to quarantine yourself for five days can’t be healthy.
Oh, and by the way, my husband just got home after being gone for 14 months. Five days away from him? No, thanks.
But, wait! There’s more!
A Special Caution for Women
Pregnant women or women who want to become pregnant in the next 6 months should not use radioactive iodine, as the treatment can destroy the fetus’s thyroid and impair its development. In fact, women should wait a year before conceiving if they have been treated with the therapy.
Really? Because I thought I just did wait a year before trying to conceive.
Maybe I’m blowing this all out of proportion (because, you know, I have this disease that makes me do that). Maybe I shouldn’t jump the gun. Maybe I should meet with the next doctor in the line up and see what he/she has to say.
But honestly, I’m kind of tired of listening.