A Grave Problem

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?

It’s delicious.

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.


10 responses to “A Grave Problem

  1. I am so sorry. I can’t imagine what you are going though, so I don’t know what to say. Remember, you have “T” to discuss this also with you. I know….it is your body, but you are not alone anymore, so stop. This does suck. I know you are saying, why me? It sucks, it sucks and it sucks somemore. The only humor0us thing I can say…hey, you get out of meetings at work for a few days (that is a great thing), you have more content for a great Hallmark movie and/or book and another category to write in your blog. Just remember the footprint you have on this earth, it is very important, you just were given an uneven amount of crap to deal with, which is unfair. But remember, you have family, “T”, family, “T” and the friend who do care about you.

  2. :( I didn’t have much information on this before reading your post. Thanks for enlightening me. I’m so sorry that you’re dealing with this. It broke my heart for you as I read the “after treatment precautions” and the warnings when TTC. I hope things start looking up for you soon.

  3. Oh my goodness, I’m sorry you are struggling with this. I hope something works out for you soon!!

  4. What a terrific writing style you have! If only I could incorporate this kind of humor into writing about my own maladies and experiences with medical doctors and the medical community. You may have OCD (undiagnosed) but it doesn’t show in your writing. The person who wrote this and other posts seems to have a great perspective on matters! And I talk to A LOT of people with medical problems these days.

    Caught this by chance.

  5. Mike has hyperthyroidism… and people all the time say he looks like is on speed. They retested his to see if that is what is causing all his sleep and memory problems too… but the tests were inconclusive.

    Those treatments sound awful. I think I would just do it though and get it over with. It would be kind of nice to have a vacation away from husband and kids… lol

  6. Oh honey. I can’t even imagine what you are going through. I hope these tests were just a fluke and things start to settle for you again. I’m sorry for the heartache that this is causing you. ((HUGS))

  7. I am so sorry. :( Any chance of getting another opinion from a different naturopath? I hope and pray you don’t have to go through the radiation pill procedure, but I also believe God has a plan here, though it might be hard to see. Praying for you.

  8. Oh bummer! Sounded like you’ve been relatively nicely controlled for a decent length of time – such a pain (to put it mildly) that you’ve spiked again. Also not easy to be between a rock and hard place when it comes to choosing your therapy options. Hope you manage to reach some peace with your next course of action – seems like you’re faced with choosing the lesser of all evils :(

  9. thinking of starting my own graves disease blog – i did a google search and read this entry! i am so sorry you are going through this and i can totally identify, though i have only had graves for 2 years give or take. i have a phenomenal natural doctor who has complete confidence that i can keep my thyroid – she does Nutrition Response Testing and we are working hard – though right now i am on Methimazole (which i don’t want to stay on given how bad it is for pregnancy etc) cause i was SOOOOOOOOOOO hyper that i couldn’t really breathe and my heart was up to 150-180 just hanging out on the couch! maybe don’t give up your thyroid just yet – or maybe do if you are just SO sick of dealing with the flux! but given it is autoimmune in my case i feel like i would be getting rid of my biggest problem (my thyroid) which is really just an innocent victim of the real problem (my immune system) who has decided to attack it! i really appreciate the eye references – i spent 3 hours in tears yesterday cause i got dry and watery eyes watching 3 hours of tv in the dark with a fan blowing on me – of course it is thyroid eye disease right??? well that’s hyperthyroid for you!

  10. I was just diagnosed with Graves Disease on Friday, I am so lost on WHAT to do or what this even means. I can’t imagine taking a medication that will leave me astray from my daughter for a week, or not sleep next to my significant other for 5 nights. I feel like I am making a big deal out of nothing but I don’t want to do something that is going to be harmful to others to just be around me, that can NOT be healthy to my body. I think that you have opened my eyes to a lot but it’s also even more scary for me. Would it be bad to just ignore it? I mean, I have gone 25 years without knowing?

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