The cost of hope

I’m feeling pretty low tonight. This is the dangerous side of hope. At first you feel so good, but when it’s gone you’re left feeling worse than ever.

Last week, a reader commented on a post where I talked about the symptoms I’ve had when I’m pregnant, and mentioned that it sounded like hypothyroidism (a definite plus for blogging, btw!). Specifically, I was talking about how I start to feel extremely exhausted to the point that just standing up long enough to brush my teeth is enormously hard, and things like breathing take a ton of effort. I know its normal to get tired during pregnancy, but its hard for me to beleive that what I’m describing is just normal pregnancy symptoms. Plus, there are other things too, like a really low body temp, really low blood pressure, and super-duper low pulse. When I’ve been in the hospital waiting for a DnC and hooked up to the machines, every single time my pulse is so low that it sets off the monitors. It hovers around 45-50. The nurses always come over to turn off the monitor and just say, ‘oh your so young and healthy’. Well, as nice as it would be if that were true, it’s just not. I’m no couch potato, but I’m not in the greatest shape. I get winded walking up a flight or two of stairs. So, that just didn’t sit well with me as an explanation.

I’ve looked in to these things before, but I there are other symptoms of hypothyroidism I’ve never had, like scaly skin and a hoarse voice. I just figured I was being a hypochondriac. Plus, by the time I had these symptoms, the pregnancies were already failing. I remember thinking, if I ever have a normal pregnancy I’ll have to ask about these weird symptoms. It never occurred to me that it might be something that was affecting the pregnancy itself. But after I started looking in to it this past weekend, I immediately saw it’s very clearly associated with recurrent pregnancy loss.

And this is where the hope comes in. It all just started to fall in to place. I figured, here is the solution I’ve been looking for all this time. I just wasn’t paying enough attention to the signs, and now that we know what’s going on it’s easy to treat and next time will be totally different. I really tried to keep it in check, I tried to tell myself it was a terrible idea to get this in to my head before I’d even had a test. Plus, even if I do have hypothyroidism when I’m pregnant there’s no way to know that its causing the miscarriages. We could do all kinds of treatment and I could still miscarry. Hope is just such a stupid idea.

Well, yesterday I called my doctor and requested a thyroid test. I was shocked when they called and said I’d had a test (along with all my other tests) over a year ago. I can’t beleive there are tests I don’t even remember having. But, at that point (when I wasn’t pregnant, and wasn’t having symptoms), my TSH (thyroid stimulating hormone, the most common measure of thyroid function) was 2.5. Labs often use a normal range of .5 to 5.0 as normal, but the most up to date standards are to use a range of .3 to 3.0 (that is, greater than 3.0 is potentially indicative of hypothyroidism). Even with the more narrow range though I was well within it last year. So, I figured if I’m only having the problem when I’m pregnant it would have to be going up quite quickly to be having an effect on my pregnancies so early, but maybe that’s possible.

This morning I went in for another test, to get a more current number. At this point, I should also mention that it’s possible that I’m pregnant now. I’m about 10 dpo, and I have all the classic symptoms I usually have at this point. BUT, I had chemical pregnancies the last two months in a row, so it could very well be a false alarm. Point being, when I got my thyroid test this morning, I had in my mind that I could be pregnant and so the levels should be higher. I was hoping it would be really high (weird to be hoping something is really wrong with you), so that we’d know that was definitely what was wrong and could hopefully start a treatment in time for this (not yet even real!) pregnancy to work out. That’s a lot of hoping for a lot of things.

I spent all day on the edge of my chair waiting unrealistically for the phone to ring even though they said it would probably be tomorrow. When it didn’t ring I came home ready to relax after feeling so tense all day. Then a few hours ago a little email popped in to my box, saying I had an update to my health record. I didn’t even know that was an option! Well, there were my results, and they were not what I had hoped for.

My TSH is 2.72, and my T4(free) is 1.07. These are both within the normal range, although my TSH is higher than last year. I think the rational way to interpret these results is that there is no problem and this is not causing my miscarriages. In fact this is basically what my husband said, which got him promptly yelled at. I’m so frustrated with the possibility that I was just totally wrong and got my hopes up for nothing I can’t stand him telling me what I know is probably true.

But my brain is not rational, and this is where its going. So, if my normal number when I’m not pregnant is 2.5, and I’m barely barely pregnant now and its already 2.7, it must be going up fast. And I shouldn’t be surprised that its still normal at this point since I’m not really having symptoms of it right now (although my body temp was 97.2 this morning and I’ve been shivering under a blanket even though its 80 in here). So, if I’m not really having symptoms yet, I shouldn’t be expecting the number to be elevated yet. If we track it, maybe in a week it’ll be elevated. Or, maybe I’m not even pregnant, and so the number especially wouldn’t be elevated yet. But here’s where it gets tricky. If this is actually something that is affecting my pregnancies and I start bleeding around 5 weeks, how could my levels be changing fast enough to affect the pregnancy that fast but we can’t detect it yet? The rational side of me says that’s not likely.

So at this point, the best case scenario is that I’m pregnant and we keep tracking my levels and they go up really fast. But realistically it seems very unlikely that we could treat it fast enough to work for this pregnancy (if it exists). So the best I’ve got now is that I have to be pregnant to diagnose the problem, have another miscarriage and then treat it proactively next time?? Not sure I like that best case scenario, but it’s better than the alternative.

Which is that my hope has all been completely pointless, we still have no idea what the hell is wrong with me, and I will just keep having miscarriages forever.


6 thoughts on “The cost of hope

  1. Not sure this is helpful at all but have you been tested for thyroid antibodies as well? There seems to be a connection between thyroid antibodies and miscarriage even when diagnosed with normal thyroid function. It might be worth looking into.
    Hang in there, keep asking questions, keep pressing on the elevated levels. I’m crossing fingers you are BFP and that everything resolves itself so you get what you want and deserve so much.

  2. This post was so hard to read, but I also completely relate. It feels like every time we take a step torward to becoming parents, we also take two steps backwards. We’re just stuck in a constant infertility limbo. Sometimes we feel ok, other times we don’t. I’m sorry you didn’t get the news you hoped for. Keep us updated on how you’re going this month. xx

  3. Just as an FYI, “normal” and “optimal” are two different things. Though 2.5 is considered the upper end of “normal” for fertility, the ideal range is between 1-2 for conception and pregnancy. I’m hypo, and my medicated TSH was 2.2 before we started our last IVF. At beta day (so, just two weeks after conception) it had jumped to 3.7!!! And that was WITH an increase in my meds. We continued the higher dose (it can take several weeks to have an effect on bloodwork) and my TSH is now 0.8. It will continue to be monitored monthly throughout my pregnancy.

    I have no proof, but my heart tells me that elevated TSH may have played a role in at least one of my earlier losses. My RE at the time neglected to tell me to increase my medication, and we had slow fetal heartrates and an eventual missed miscarriage at 8 weeks (discovered at 11 weeks). So you may have to push for continued monitoring/treatment, but it is well worth it if you have a successful outcome.

    Much love,

  4. Pingback: A little grey blankie | Recurrently Lost

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