My first appointment with the endocrinologist was early December. Last week I went back for a follow up to see how my body is reacting to the dosage. I got bloodwork done and the results just came back that my TSH is higher. My initial test back in Dec had my TSH at 2.96; last week it tested just above 3.
I don't get it. I've been taking the dose as recommended for 8 weeks. Why would my numbers go up? My doc is recommending doubling the dose from 25 to 50 and retesting in six weeks. I told the tech relaying this message that I want to speak to the doc because I have questions. Am I supposed to delay a transfer for this? It's too precious and expensive to transfer before fixing this, but in the meantime I'm not waiting six weeks to find out if it worked. If she doubles my dose I want to be on it for a week and then retest. If it's still not good then the dose needs to go up again. I'm not being impatient, I just don't think the endo doc realizes my timeline.
My doc answered some of my questions. First she said the number is within normal variation range so she would interpret the results that the TSH didn't change, not necessarily that it "went up," and the dose needs to be increased. Second, she said it takes a minimum of 4 weeks to see the full effect of a dose so she doesn't recommend repeating labwork within a week but would cut it down from six.
She did say that since my "TSH is in the normal range now, it will not cause a miscarriage or fetal demise so it would be safe to continue with the FET." Do I trust that? I don't know if I believe her. Every single article I read says that TSH numbers above 2.5 have a greater chance of a miscarriage.
I don't want to take Google's word over that of the trained professional doctor who is paid to treat my specific case but it's hard to argue with a study like this: First Trimester TSH levels between 2.5 and 5.0 are associated with increased pregnancy loss
Do I loop in my RE? I can already imagine that his answer would be "it's up to you." On one hand I definitely don't want to delay. Four weeks to wait to test seems like a lifetime right now. And then what if it's still high? That's another increase with an additional four weeks of waiting. What if this is just my normal and no dosage will help? On the other hand I don't want to risk it. I don't want to have found an actual issue and then just plow forward and ignore it. I know I would be devastated if the FET doesn't take and I will feel like we could've done something... like wait for TSH levels to get to the ideal range. But at the same time if we're increasing the dose and then checking it again soon (and possibly increasing it again due to a pregnancy?) then isn't that enough? Some women get pregnant not knowing their TSH levels are up and only add on thyroid meds once they're already in their first trimester. Is that a risk I'm willing to take?
What to do??
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From what I understand, TSH numbers can sometimes vary throughout the day, so it's possible you caught the first TSH value on a low for that day and the second on a high value for that day. TSH numbers are just a "snapshot" so you know what neighborhood your thyroid levels are in.
ReplyDeleteSo it didn't really go up, but it seems it didn't really go down, either. Doubling the dose seems like a smart move, and you may have to increase the dose even more once you start estrogen for the FET, as estrogen can interfere with thyroid hormone function. (My thyroid hormones always went through the roof when I started estrogen -- much more than normal. It got up to 7 or something one time, before I had any idea estrogen interfered with thryoid levels, and before I understood that I should aim for TSH less than 2.5.) I got aggressive and increased my levothyroxine to 125 for my successful cycle -- and it turned out it was too aggressive, as my TSH got down to 0.03, which is hyperthyroid. But hyper isn't as dangerous as hypo to the embryo. I'm on about 110 now and holding steady with my TSH around 1.0. (For reference, I started with a TSH of 4.5 or so before I ever took meds, and I felt horrible at that level.)
It's an inexact science, and who even knows if it was just a coincidence that my successful cycle was the one I was aggressive with thyroid meds. But if I'm lucky enough to have a second shot at pregnancy, I definitely plan to err on the side of caution.
At the same time, if your next blood levels look good, I'd say up the dose to 75 or so when you start estrogen and check the level again when you get your beta, and go from there.
Of course, I'm no medical professional, so please take this advice (based only on my weird body and 3 FETs) with a grain of salt.
Doubling the dose now and then restesting in four weeks. But who knows what it will be then. And if we start estrogen or even a transfer between now and then it means that it throws it off. I feel like it just makes sense to get a baseline dosage before adding anything to the mix (like estrogen or a transfer/preg/hCG). I hate the idea of waiting but how can I know how much to increase if I don't even know the right dosage yet to get to the ideal range. I'm currently at 50 mg but the right dose might be 75 or even 100... who knows.
DeleteI would take the new dose and then get bloodwork done after a week or two to check your levels, not wait for 6 weeks! Definitely try to get your TSH levels lower before the transfer. It's frustrating that more doctors don't seem to take thyroid seriously when it comes to pregnancy. Sure there are women who never get their levels checked and everything is fine but why risk it.
ReplyDeleteI know! Especially with all these studies that show a direct correlation between elevated TSH and miscarriage! Even though I'm not at that range of >4, it's still worries me. I'm still in talks with both my RE and endo and they both seem to think that it's not an issue but I'm still researching and talking before making a decision.
DeleteAnd I second what Pamela said that the IVF hormones can increase your TSH levels. For me 75mg was the perfect dosage. Best of luck!
ReplyDeletei don't know anything about thyroid levels as it wasn't one of my issues, but know the heartache that comes with waiting another cycle, even if it's the right thing to do. Good luck with your decision.
ReplyDeleteThank you, it's such a tough call to make. Delaying is horrible, but a failed FET sucks even worse. I'm trying to do everything in my power to go into a transfer confident that I've done everything I could to help it succeed. So far I'm not convinced one way or the other but I hope to get to a decision I'm happy with soon.
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