Tag Archives: hyperthyroid

I’m So Low I Have to Look Up to See Whale Poop

Yay! I’ve become the boring person who does nothing but talk about their medical problems. If you knew my family, you’d know it was just a matter of time. This is how conversations with my relatives go:

Me: So, what’s new?

My Mom: Well, Dad had a doctor’s appointment today. Oh, and did I tell you Uncle X came home from the hospital today? His legs are still swollen, but he’s feeling better. Auntie Y’s funeral is on Wednesday and afterwards I’m going to see Cousin Z in the nursing home.

Me: Really? Okay, we’ll I’m going to go throw myself out the sixth floor window. Have a great afternoon.

My grandfather used to give me advice on aging. “Sara Lee,” he’d say, because he had a nickname for everyone. “Sara Lee, don’t get old.”

“Sure beats the alternative,” I’d tell him.

Now I’m not so sure. I’ve seen old. It ain’t pretty.

Anyway, enough about everyone else. Back to me.

Monday I took my two sets of lab orders and I hied me off to a different lab. I walked in the main entrance of the hospital and up to reception. I had to wait a few minutes, but once the receptionist got to me, she was quite pleasant. She took my name, entered it into the computer and asked another lady to escort me to the waiting room.

The attendant was a beautiful little Asian woman who asked me if my hair was natural. When I told her, yes, it was, she sighed with envy and said, “I love it!”

I like this place already.

She courteously pointed me to a chair and told me someone would be right with me. I didn’t have time to do much more than take off my coat and pick up a BHG magazine when a door opened and my name was called.

A third woman ushered me into an office and took my paperwork. Since I had never been there before, it took a few minutes to enter my information into the system, but I suspect that was a one-time thing. She photocopied my ID and insurance card.

I braced myself, waiting to be told I’d need to walk down to East Japeepee to get a blue card or an orange card or a notarized certificate of authenticity, but she simply printed out two documents, asked me to sign the privacy thingamabob and handed me my lab orders back. Then she gave me directions to the lab.

The directions weren’t that great, but there were signs everywhere so I figured it out pretty quickly. I can read like that.

I walked down to the lab and checked in with the lab receptionist. Okay. Admittedly, that’s a lot of check-ins, but so far everyone had been really nice, so I didn’t mind.

Did I mention I didn’t need a blue card?

At the laboratory, the receptionist informed me that if I had both sets of labs sent to both doctors, I would only be charged for one draw instead of two. Sign me up, yo. There’s no reason each doctor couldn’t each see the others’ results, so I said, Yes, please.

I thought it was nice that she showed me that little loophole. She took my paperwork and pointed me to another waiting room. This is the only sub par part of the experience. Not the waiting room – that was fine – but the fact that I was there about ten minutes. I was the only one in there.

It seemed like a long time, but if that was the worst thing that happened to me, it was going to be a pretty good day.

Moreover, the tech who waited on me was both friendly and…wait for it…competent! Yes, that’s right. She managed not to poke the needle through my vein despite the fact that she had to change out six differnt tubes. Count ‘em, six.

Rock on.

I am, however, reserving my final judgment until the process is complete. I still need to see how quickly the results are processed and how the billing cycle plays out. I’ve had problems with both before and am in no hurry to repeat the experience.

But, it’s looking good. It’s looking real good.

I did get one set of results back today: the thyroid. And because I know you’re dying to know, here they are:

T4: 0.79 (normal range: 0.90 – 1.70)

TSH: 1.39 (normal range: 0.27 – 4.20)

The good news is that the TSH (the thermostat) is in the normal range. I mean, I guess that’s good news. Again, I’m not sure why it needs to be and, again, I forgot to ask. Because I am a jackwagon.

The other good news is that my T4 (the furnace) is lower than normal. I say good because it was that, combined with the now normal TSH, that prompted the doctor to adjust my meds to every other day.

Yahootie! I’m now taking half of what I was before. And that can only be a good thing, in my book.

Still, it irritates me that I had to get lower than whale poop to get a change made. Today when the nurse was explaining the results she told me that I “may be feeling a little tired”. Clearly, she has no memory of our last conversation. The one where I told her I was exhausted and depressed. The one that happened four weeks ago.

Today, though, I didn’t even care. I was just so happy for the news.

I have not heard the results from my OB/GYN orders yet, but I did take some time yesterday to look up what exactly the tests were. My doc did explain them to me, but she has a soft voice, talks very quickly and has a little bit of a lisp. I can totally understand what she’s saying, but there is a two-second delay there. Make that a three-second delay. I’m adding a second due to the effect the sheer terror of being in any doctor’s office has on my brain.

All I remember hearing is, “Blah blah blah blah, Day 3, blah blah blah.”

Right. Got it.

So I looked it up. And I was horrified. You guys, I’m basically waiting for the phone to ring to find out whether or not I have any eggs left.

Hoe. Lee. Whale poop.

Oh good. Because between my job, my father’s Parkinson’s disease and my husband applying for grad school, I didn’t have enough stress in my life. This makes everything so much better.

I need a drink.

Oh, wait. I stopped doing that so that I could get pregnant.

In that case, I need some ice cream. Stat!

How Low Can I Go?

Now…where were we with this Graves disease thing? Ah, yes. A few weeks ago I reported out on how I did with the list from my naturopathic doctor. In that post I had seen my conventional doctor and he’d started me on propylthiouracl to inhibit my thyroid production and ordered blood tests for two weeks later.

I also said I’d share my lab results “tomorrow”.

And if by “tomorrow” I meant “almost three weeks later”, then I wasn’t lying.

Oopsie.

Lab #1

Two weeks after I started the meds, I went to the lab to get my blood drawn. Because we all know how I love to go to the lab to get my blood drawn.

The results were ready the next day:

T4: 1.21 (normal range: 0.90 – 1.70)

TSH: so low it was immeasurable (normal range: 0.27 – 4.20)

Not too bad. Actually, my T4 was slightly lower than I would like to see it. I feel best when I’m in the mid to high range, which would be 1.30 – 1.70. I could live with 1.21, but my fear was that it would continue to drop.

I have reason to fear this as, historically, this is the rollercoaster I’ve been on with these meds.

Lab #2

Four weeks after the first lab, I went for another blood test. For a couple weeks prior I had been noticing my “I’m low” signs: exhaustion, depression and listlessness.

So I wasn’t surprised when the results came back looking like this:

T4: 0.92 (normal range: 0.90 – 1.70)

TSH: 0.03 (normal range: 0.27 – 4.20)

In fact, I was a little relieved. I always think I’m crazy (or weak) first and sick second. When I get hard and fast numbers to back me up, then I can be sick with a clear conscience. My T4 was almost as low as it could be while still considered “normal”. My TSH was climbing – or crawling, rather, like a half-dead worm left out in the sun – into the measurable zone.

Yay! Oh, wait. Is that good? I have no idea. I had the following conversation with the nurse when she called to give me the results:

Nurse: And your TSH is 0.03, so that’s coming back up. Everything looks good, so no changes to the medication and we’ll do this again in four weeks.

(My stomach droops with disappointment here. Seems my plea to stay in the mid-range has fallen on deaf ears – again.)

Me: So my TSH is coming back up. Is that why he [the doctor] wants to keep me on the low side of normal?

Nurse: Yes. Why, are you experiencing symptoms?

Me: Yes. When my levels are low I get tired and depressed and it starts to cause some problems for me.

Nurse: Okay, well I’ll tell him what you’re feeling and if he wants to make any changes, I’ll give you a call back.

Me: Okay, great. Thanks.

(I hang up the phone and fight back the tears because I know she isn’t going to call back.)

And she didn’t.

I was left to figure out a few things on my own. For instance, why do we want the TSH to come up? Remember, the TSH is the pituitary hormone that tells the thyroid to create more thyroid hormone. A lot of folks use the “heater analogy”. The TSH is the thermostat and the thyroid is the furnace. When the furnace (thyroid) starts working overtime and the room gets too hot, the thermostat (TSH) says, Whoa! Throttle back, there, Skippy! Or words to that effect. And the furnace stops cranking so hard. My house is so hot that my thermostat was basically turned to Off, but the furnace was still cranking.

So, why do we want to turn the thermostat back on again? Won’t that just make things hotter in my house? (Uh, perhaps I should re-phrase that. Whatever, you know what I mean.)

I’m confused.

My husband pointed out that maybe the doctor wants the thyroid to make enough hormone to be in the normal range while it is on the blocker. Oo! Valid point.

But my husband’s not a doctor. He doesn’t even play one on TV. I’d really like to hear this kind of thing from my doctor. Unfortunately I’m a sucky self-advocate. I can never think of these questions while I’m on the phone (I hate the phone with a fiery, furnace-y passion) and I’m too timid to call the nurse back later because I feel like I’m bothering her.

I know. It’s stupid. I’m the customer and I’m paying them money. But I’m better at passive-aggressive ignoring of orders. I’ve been known to stop taking the medication on my own because I was so miserable. I’m not above doing it again, but considering the TTC situation, I’m trying really hard to figure this all out and get to a place where I’m on the lowest possible dose to maintain the most ideal thyroid level.

It’s not been easy.

I’ve thought about finding a reproductive endocrinologist, but quite frankly every time I start to research it online I get confused, overwhelmed and depressed. How do you find a good doctor when no one can seem to give you a referral? By the number of stars they have next to their name on an internet search? Oh boy! Six people gave Dr. So-and-So five stars! That is the perfect reason to make an appointment. Except that Dr. So-and-So probably had six friends go online and rate him. Yeah, that’s how those things work. So, not so much.

What now? Well, I’ve since received my “orders” in the mail for the next blood draw. (Because we all know how I love to go to the lab to get my blood drawn.) I almost cried with relief when I opened them because I’m praying that my T4 furnace will now be “below normal” and the doctor will finally reduce the meds.

I’m tired of being tired and lead-legged. I hate feeling like life is just a senseless merry-go-round of work-sleep-work. And I’ve gained 5 pounds.

Yes, 5 pounds. I know that’s not a huge amount, but it’s more than enough for me. Before you give me any grief, let me say that 5 pounds puts me in a place where clothes start to feel tight and uncomfortable. I don’t do uncomfortable. And I don’t gain weight. I walk an average of three miles a day. I do strength training. People at work hide their lunches in shame when they see me coming to the kitchen. My husband and I eat dessert only two (okay, three) nights a week.

There is no reason on this Earth – other than my thyroid levels – why I should be gaining weight. And that just sucks. Because losing weight is not easy. Because I don’t feel it necessary to spend money on a whole new wardrobe because my doctor thinks my TSH should be higher.

So, yeah. I’m complaining about five pounds.

Anyway, I’ll go to the lab this week, which will be about four weeks since my last test.

In the meantime, I also saw my OB/GYN who gave me a preliminary good bill of health on my plumbing. The next step is more blood tests (because we all know how I love to go to the lab to get my blood drawn), to be done on Day 3 of my cycle – or Day 4 if Day 3 falls on a Sunday.

Since my cycle has ever been accommodating – did I mention I got my period the day my husband came home on leave from his Iraq deployment? – it made a grand appearance on Friday, which means two things:

1. I’m not pregnant. (Duh.)

and

2. Day 3 falls on a Sunday.

The good news is that I can do both blood draws on Monday, so I only have to go to the lab once. Hey – I’ll take it.

Oh, and I found another lab to go to that, location-wise, is just as convenient as the old one. Aren’t you proud of me? So that should be an interesting adventure. I’ll be sure to give it my critique once I’ve been.

I just hope I don’t need a blue card, because my old one has expired.

Stupid blue cards.

The Joy of the Blood Test

My diagnosis of Graves disease came with a lifetime invitation to the laboratory to regularly test my thyroid levels. Regardless of what path I choose, I don’t see this happening any less frequently than once every six months. Right now, twice a year seems pretty far off.

I’ve had so much blood drawn over the last five years that I’m sure I’ve had a complete oil change by now. At best, I’ve gone to the lab every three months, but sometimes as often as every few weeks.

Blood Work Kit

not my photo

The insanity, by definition, is that I keep going to the same lab, hoping that the way I’m treated will change. Actually, it’s not really insanity so much as laziness. The lab is on my way to work.

When I show up, I wait by the sign that says “Please Wait Here” and is plastered with requests that I wear a face mask if I’m sick. Um, if I’m healthy, would I be here? But what I have isn’t contagious, nor is diabetes, high cholesterol or probably most of the other things people go there to get tested for, so the face mask thing is ridiculous. It serves no purpose other than to make me – the germaphobe to end all germaphobes – more nervous.

I have my lab paperwork and my blue card ready. The blue card is another thing I don’t understand. This particular facility and its affiliates require you to have a blue card to get service. Even if you have a gushing limb hanging by a single tendon, you need a blue card before they’ll get out the sewing kit.

Okay, not really, but I’m telling you, they’re blue card Nazis. The blue card has your name on it and your insurance information and to get it, you have to go deep into the bowels of the lab, stand in line again, hand over your insurance card, then wait 20 more minutes while it is printed up.

It also expires in one year, at which point you need it have it renewed. Fortunately you can do that online by filling out a simple 45-page questionnaire in less than 15 minutes, at which point it logs you off.

It’s awesome.

After waiting at the “Please Wait Here” sign for a few minutes while there are no other patients in sight of the reception desk, one of the women behind the counter glares at me and growls, “Can I help you?”

Either this is the worst place in the world to work, or they require their employees to fast for 12 hours before coming to work. Which would make it the worst place in the world to work.

I smile pleasantly as I approach the bench and say, “Hi there!” I hand over my paperwork and my blue card (because I’m efficient that way) to a silent individual who doesn’t once look up as she asked me the following:

“Spell your first and last name.” Why? Isn’t it right there on the paper?

“Date of birth?” Sure, no problem.

“Do you have your insurance card with you?” What?

Because I already have a blue card, I didn’t bother to bring in my insurance card.

“It’s in the car,” I tell her. She sighs heavily.

“Isn’t that what the blue card is for?” I ask timidly.

“We need both.”

This is retarded. And that’s all I have to say about that.

She lets me go this time with a warning. Yay! Still without looking at me, she tells me I’m all set to have a seat.

Since my blood work doesn’t require fasting, I get to thumb through old magazines about babies or race cars, neither of which I’m particularly interested in at the moment, while all the fasters go ahead of me. Once I finally do get called, a tech ushers me into a room.

Sometimes they’ll ask me how I am. Sometimes, not. But once I’m in the chair, this is always the conversation:

“Spell your first and last name.” Eye roll. I swear by all that is good and holy the next time I’m going to spell my name wrong, just to see what happens.

“Date of birth.” Didn’t we just do this?

As the tech preps the instruments, I roll up my right sleeve. I’ve only encountered maybe two people who have been able to draw blood out of my left arm. Without looking at me, the tech says, “Do you have an arm preference?”

Yes, I do. Please take the blood through the sleeve of my left arm. That’s how I like it done.

I really don’t have the patience for this kind of thing. But I answer civilly, if not pleasantly.

“Small pinch,” the tech says as she pushes the needle through my vein and out the other side. I can’t tell you how many times this has happened. It is not a pleasant feeling.

I used to cringe when I saw the interns coming because they looked so nervous. Now I pray for one. The interns are awesome. They are still new enough to be pleasant and they are so anxious to do a good job that they actually do. In my experience, it’s the seasoned techs that suck the most because they’ve stopped caring.

They draw a couple of vials (changing the vial sucks, especially when the needle is all the way through your vein), pull out the needle and press on the gauze pad. Invariably, they rip off a seven-foot piece of tape and practically wrap it around my arm five times.

Okay, that’s an exaggeration, but still. A two-inch piece of tape would suffice. Remember, I’m Italian. There’s no need to put adhesive on the front of my arms. If I wanted them waxed, I’d wax them, thanks.

The tech then recites the speech about applying pressure for 3-5 minutes to prevent bruising. I feel like saying, If you didn’t stick the needle clear through my vein, that would go a long way towards preventing bruising. Instead I smile and say, “Thank you.” Then I grab my jacket and high-tail it out of there.

I’m determined to find a new lab to try next time I get my “orders” in the mail. I’ll report out once I do – it should be in about three weeks.

How about you? Have you ever had to have blood drawn? Was your experience good or bad? Any suggestions or ideas on how to make the process smoother?

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.