Intro, question about thyroid antibodies (TW: LC mentioned)

[moto]

Hello!

I hung out on 3T a fair amount on the other site. On this site I've mostly been on SAIF. Here's my story: my husband and I suffered through unexplained infertility - although we think it was likely caused by his treatment for colon cancer. He was diagnosed at 28 and 6 rounds of chemo left him with extremely low testosterone. His doctor put him on testosterone therapy, which ended up causing his sperm count to plummet all the way down to zero. We found out, got him off the medication, and 12ish months later his sperm returned enough that after our first round of testing with the RE, they declared his sperm fine and said we were unexplained.

Despite that we tried 7 IUIs and 2 rounds of IVF with no success. We won the lottery with IVF #3 (over four years after we initially started TTC) and I gave birth to twin girls in June of last year. We have one embryo left, and are preparing for a FET hopefully later this month.

I recently dragged myself to my PCP for an annual physical for the first time in years, and her bloodwork discovered I have very high thyroid antibodies. My other values (TSH, T3, T4, etc) are fine. My RE tested my TSH in September. It was normal, so he's not concerned. My PCP told me to go see an endocrinologist for the antibody issue. I did some googling, and discovered that these antibodies are associated with lower implantation rates and increased miscarriage rates. That's obviously not what I want for my last chance at another baby.

So I'm kind of freaking out and wondering if I should cancel/delay my FET while I figure out how to treat this. My RE is not concerned, and my husband thinks I'm overreacting. I will start calling endocrinologists, but I doubt anyone can get my in before my FET, and I also doubt they will know the intricacies of how this affects fertility. I'm trying to tell myself I had a successful pregnancy before despite (probably?) having these antibodies. I don't know what to do - any advice or insight would be much appreciated!!

[charliefox]

I have no experience with thyroid antibodies but if this is your last chance then I don't think any amount of worry is overreacting. It sounds very reasonable to me to get things checked out further. If this cycle were to not work you wouldn't want to be left wondering if the reason was these antibodies. ((hugs))

[happyin14]

I am not the best person to advise, but here’s what I know. For fertility, there are two ranges of “normal”. One if you DO have the antibodies and one if you don’t. I’d want to talk to someone who understood that (an RE?) and get help deciding if it needs to be treated. Maybe the endocrinologist would also know, but I would definitely want to hear it from someone who fully understands the impact on fertility.

My other understanding is that they can treat the thyroid. My levels were normal - but then we tested for the anitbodies because they weren’t normal if I tested positive. If that makes sense.... so it didn’t end up being an issue, but my RE spoke to me about it in case it was (before getting the results back). And my memory is that she just said you’d treat the thyroid and wait for levels to land in the new normal zone.

Hope this helps!

[happyin14]

Sorry - I missed that you asked about this specifically. If the RE has levels from September and knows about the antibodies, I think you are good.

[sunshiney]

Hi, moto!! I'm sorry you're having to deal with this again. You said your RE is not concerned - were you able to have a conversation where they addressed what you'd learned about how these antibodies can impact fertility, and they still felt that in your situation it was not a problem? I would want to have that kind of conversation before moving forward, and if it seems the RE is not super informed about it, I'd probably wait for a consult with an endocrinologist. Just to be able to know in the future that I'd done what I can. Good luck!

[twohopes]

Hi moto, here as well. I second what sunshiney said; I think it is good to have a conversation with your RE about whether the lack of concern is evidence based (which would be really reassuring to you) or because it is not something that he/she has researched closely or believes to be an issue. I know that the two different REs I saw had vastly different approaches. My PCP, who actually discovered the issue, told me to disregard them completely, it is nothing. That was what the first RE I had also more or less said, as long as TSH is normal. My current RE has a more aggressive approach and talked me through why, including the peer reviewed studies. One of the more actionable steps was to conduct more testing to uncover the extent to my autoimmunity; thankfully, so far this is the only concern. Fundamentally, though, other than medicine and monitoring, there is not a whole lot that can be done. Some do say that eating gluten free can make a difference, and some research backs it up. I think in the end, you just have to be comfortable with the next step you take, and I wish you all the luck. I do remind myself that this is very common and many women have had many babies without even being aware. I guess because the stakes are so so high for us, we tend to overanalyze and overthink.

[moto]

sunshiney - no I haven't actually spoken to the RE. I told my nurse about the antibodies, and she just said that he "wasn't concerned" and the FET could still go as scheduled. I could delay and try to see an endocrinologist, but I'm worried they wouldn't know much specifically about fertility. My RE is also an endocrinologist, so I'm trying to just trust him (and after all, he got me pregnant before!) but it's hard. I just really want this baby!

twohopes - thanks again! From what I've read there are medications they can put you on during treatment cycles to try to counteract the antibodies, which would make me feel better - but I really only found one study about it and I know my RE doesn't prescribe anything unless it's proven a million times over. If the embryo implants maybe I'll be more aggressive about asking endocrinologists/obgyns if I should be on medication.

[twohopes]

moto, I think the medication is just Synthroid, at a low dose. Let me know if you have seen something else.

[moto]

twohopes - I found this study that suggested three different meds: rbej.biomedcentral.com/articles/10.1186/1477-7827-7-137

[sunshiney]

Wow I just read that study and there is such a significant difference in ovarian response and implantation rate... The three meds together bring rates for women with anti thyroid antibodies right up there with women without ATA. I would definitely insist my RE look it over and if he didn't want to prescribe, I'd want a good reason why. Also, thank you for raising this issue...I am going to double check if I've been tested for this because I have PCO and hyperprolactinemia, both of which had higher prevalence in the women with ATA then without, and hypothyroid runs in my family.

[moto]

sunshiney - Yeah this study is the reason I'm so stressed out! But... the study wasn't that big (36-55 women per protocol group) and it was 8 years ago. And I can't find any others like it. So I'm not sure if I should take this as the absolute way to treat the antibodies. Plus I never know how hard to push for a treatment that I discovered myself on the internet, and of course I feel like my PCP and RE think I'm over reacting. I wish I knew whether or not I had all these antibodies when I got pregnant the first time.

[twohopes]

Hi moto, one of the three medicines is the generic name for Synthroid (levothyroxine), which has been proven by more than one study to help with pregnancy/IVF outcomes in euthyroid women with antibodies. The second one is aspirin, and the third is a steroid (which suppresses the immune system) and many women with immune issues take these to modulate the immune system. For what it's worth, the latter two have not been brought up by my team, and I do feel they are the ones overreacting to my antibodies in my case. But still it would be great to hear from your doctor about what he/she thinks. When is transfer scheduled for?