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.

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4 responses to “How Low Can I Go?

  1. I just have to tell you that this is so amazingly well written. I, too, dealt with thyroid issues, primarily after my first pregnancy. I also had multiple (like 5) miscarriages after my first pregnancy. After playing with meds and trying to figure things out, the only thing that seemed to help me out the most was acupuncture and going totally gluten free. After one month of regular acupuncture treatments, my thyroid finally was in normal range again, I was not experiencing symptoms, and, low and behold…I stayed pregnant (even though, after all those miscarriage, I was a total wreck for the majority of my pregnancy).
    Thank you so much for sharing your results!!

  2. I just want to give you a hug or at the very least take you out for ice cream (not frozen yogurt – I can’t stand that crap). Ugh, I’m sorry your doctor doesn’t care about quality of life issues.

    And I sympathize with how annoying putting on weight is, except when I gain weight it’s because I licked a brownie or thought about butter too much. To gain because my body wasn’t functioning properly would drive me up the wall.

    My midwife loaned me a book to read called Fertility, Cycles & Nutrition by Marilyn Shannon. It’s an interesting book, not sure if I’d recommend buying it, perhaps looking at the library for it. Anyway one of the chapters mentions a thyroid patient advocate named Mary Shomon. Have you checked into any of her stuff? I haven’t checked any of it out, so I don’t know anything about her, but I thought I’d pass the name along in case you were interested.

    I hope this lab is better than the last, although I never really have high hopes for those places…

  3. LOL! Stupid blue card. Man this sucks. I don’t even know what to say really…other than I’m here, following your trials. I hope things start getting better for you.

    If it helps, I’m that way with doctors too. I always forget to ask the questions I wanted to ask and I never call to bother.

  4. Oh I can completely empathize on how you must be feeling – gaining 5lbs, even when you’re as slim & trim as yourself, is enough to make you feel uncomfortable in your clothes. Combine that with how sluggish you are feeling & it’s no wonder you’re feeling so down :( Glad to hear that you’ll at least only have to visit the lab once! Hopefully the new place will be a better experience!

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