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Monday, December 18, 2017

Endocrinology update

Endocrinology report came back: My TSH came in at 2.96 and the doctor suggested starting low dose thyroid hormone.

My initial reaction: so many questions. What causes the number to fluctuate so much that this wasn't flagged earlier? Once I start medication, how often will I need testing? How do I know if meds are working? What if meds don't bring the number down? What are symptoms I should look out for? What, if anything, do I need to tell my RE? Does this mean I don't need to take the prednisone/lovenox next transfer? Would dosage need to be increased in pregnancy?  Is there a Vitamin D deficiency connection? Does the miscarriage make the number fluctuate?

Online research says that normal TSH is between 0.5 - 4.5, so I'm kind of skeptical to believe that with 2.96 I have "thyroid disease." I remember the doctor saying that while the general community sees 4.5 as the upper limit, she likes to see numbers below 2.5 for regular people, and under 2 for pregnancy.

I grabbed the following quote from here: "The study found that even mild thyroid dysfunction could greatly increase the risk of serious problems. Women with mild thyroid dysfunction had double the risk of miscarriage..."

Is it possible that this was what was causing the chemical pregnancies? It's such a small difference. Maybe it fluctuated even more during transfers? Maybe the fertility meds make it go higher and it was a greater difference during critical times? Maybe my body is just so sensitive? Maybe the developing fetuses just drained all TSH and my thyroid just couldn't keep up? If that's the case then why did the blighted ovum pregnancy not spontaneously abort like the previous transfers? Maybe it's not such a small difference if the optimal number is 0.5 - 1.5 for pregnancies. I don't know. I have more questions than answers but I don't think I'll ever really truly know all the answers to our five failed FETs.

I had a follow up phone call with the endocrinologist and she addressed all my questions. She will send a report to the RE and I'll follow up with her with an appointment before my next transfer so she can monitor my TSH before a potential pregnancy.

Here's hoping...

11 comments:

  1. I had bad symptoms with borderline TSH levels (around 4.5), and starting levothyroxine (a very cheap pill that's very easy to take -- I just take one every night before bed) made a big difference. I got it down to 3 or something, and that was fine for a long time.

    Then when I was TTC, I noticed it skyrocketing every time I did an embryo transfer. I think it even got up to 9 one time. Apparently estrogen interferes with thyroid hormone uptake, or something like that, and I'm especially sensitive to it. And estrogen goes way up for both IVF and FETs.

    Also, I read research that said TSH should be in the 0.5 to 2.0 range to be safest in pregnancy. (I've had two blighted ovums myself, including one with a donor embryo, so I did a ton of research.) It sounds like you are a prime candidate for trying this. It's really easy and cheap, it generally can't hurt anything, and it may help.

    The embryo/fetus is totally dependent on the mother for thyroid hormones for at least a few weeks, so it makes sense to me to make sure you're not borderline but strong during those weeks. I've been SUPER careful to keep my TSH between 0.5 and 2.0 this time (as of last week, it was 1.0), and I was finally successful (with my second donor embryo transfer).

    No doubt there were MANY factors that went into it, but I'll never take chances with TSH again.

    The annoying thing is that it takes time for levels to go up or down based on both estrogen levels and dosage, so you have to keep checking it every two weeks or so. But even on my crappy insurance, the test "only" costs about $20 each time. Might be free for you.

    Of all the things that you can "try" or "pay extra for" to increase your odds, this one is about as cheap, easy, and safe as it gets, and the research says it really could matter for some people. Wishing you nothing but luck!

    ReplyDelete
    Replies
    1. It's such an easy catch and a simple fix that it's incredibly frustrating we're only finding this out now. Then again, who's to say it was even an issue back when we started. There's just no way to know since it fluctuates every time I get blood drawn.

      Did you have to up your medication once you got pregnant?

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    2. I know, it's all so frustrating. I still can't even say if it was a factor in my early losses. There are literally dozens of factors (if not more), plus dozens of unique ways our bodies might process those factors, and so much that's just unknown. Feels so often like throwing very expensive darts. At least this dart isn't so pricy...

      I did have to up my dose in pregnancy, from 50 to 75, then when my TSH doubled from 1 to 2 after estrogen to thicken lining and transfer (with good beta), I panicked (afraid it was on a crazy upswing again) and cranked it up to 125. Next time I tested it was down to 0.03 (hyperthyroid -- not ideal, but not as dangerous as hypo). I adjusted the dose to 107 (100 5x/week, 125 2x/week), and now I seem to be holding steady around 1.0.

      It's all so completely individualized and often requires some weeks of tinkering. You'll probably need a lower dose than I do. I'm lucky I have an endocrinologist who'll order a TSH test for me pretty much whenever I want (within reason) and prescribe 50 AND 75 mg, 90 at a time, so that I can fine-tune the dosage pretty easily.

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    3. Yes it sounds like TSH seems very finicky. Considering all the fluctuations I've had I kind of lost faith in the regular blood work method but there's no other way to test it. I'm glad you were able to find something that works for you.

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  2. So for non-pregnant/TTC folks, 'normal' has a wide range -- 4.5 is fine and I think sometimes, they don't treat even above that.
    My TSH has fluctuated all over the place on levothyroxine (within the last year, 1.1, 3.4, 2.4, 1.1, 3.2). And that last one was the level during my positive HCG tests. Long story short, I think the research isn't the strongest in understanding thyroid levels of ~5 and their relationship to pregnancy.

    But there seems little downside in going onto levothyroxine. And as Pamela said, it's a cheap, easy fix. It's is super well tolerated by the body. And yes, they'll increase the dosages while you're pregnant.

    ReplyDelete
    Replies
    1. Right - since anything below 4.5 is ok that's why mine never got flagged, even when it reached 3.8s and higher.

      Now that I know to ask, it amazes me how many people are on it. Seems to be a pretty common deficiency.

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  3. I think pregnancy and fertility meds can cause TSH to get elevated. When I wasn't taking the thyroid meds during one cycle my TSH went way up. It's a good idea to get it to closer to one before a transfer if you can.

    ReplyDelete
    Replies
    1. and like the others said it might take some adjusting to get the meds right. I was on 50mg of levothyroxine initially which was increased to 75mg. I've been on it for this entire pregnancy and my doctor checks the levels in my blood each month.

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    2. How long were you on 50 mg before they upped it to 75? Doc put me on 25 mg and wants to retest in a month.

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    3. sorry, thought I replied to this. I think it was probably about a month for me too

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  4. The estrogen makes my tsh go up during FET. My r.e checks my tsh and ft4 weekly when I’m in a Cycle. I usually get bumped up on synthroid one time during fet. He keeps it below 2.5.

    ReplyDelete

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