8 months TTC, 1MC w/ Hashimoto’s/Hypothyroidism

I was diagnosed w/ Hashimoto’s and Hypothroidism in April 2018. I was exhausted 24/7, even w/ adequate sleep, had brain fog, weight gain, some increased hair loss, etc. Started Levothyroxine and felt better pretty immediately.

The following month I same my gyno and had my nexplanon removed and we officially started trying in May 2018.

I had a miscarriage in late-October that was pretty devastating (my due date was my birthday — that’s going to be a rough day this year).

Over the last few weeks, I started feeling some of the symptoms that led to my hypothyroidism diagnosis again and went to the doctor. They ran labs and called and said “your TSH levels are normal but since you’ve having some symptoms we’ll raise your dosage to see how that goes.”

I was so frustrated after that call because what the heck is “normal” what does that even mean. Give me the number. So I called them back and they said their range for normal TSH levels (this will vary by doctor and lab) was .4 to 4.1 and I was at 3.93.

Can we all agree that being at the highest range of “normal” is not in fact normal. And especially for a woman sitting there desperately trying to get (and sustain) a pregnancy. An ideal TSH range for getting and staying pregnant is 1 - 2.

I wanted to cry and scream. Anybody else just completely exhausted with having to learn as much as possible on their own, and then have to fight SO hard to get medical professionals to take them seriously?

***Also, if you’re struggling with getting pregnant and you’ve never had your doc check your thyroid levels — ask them to, and don’t let no be an answer. This can be done by your primary doc/PA/NP or your OBGYN. It’s literally just another check on their lab request software and is so important. A healthy cycle is dependent on a healthy thyroid, and if you get pregnant with thyroid issues, the MC rate is higher in the first 12 weeks AND from the 2nd trimester on.

***And if you are diagnosed with any thyroid issue at all, you need to test test test during the later part of your TWW to confirm pregnancy asap. Once confirmed via a positive home test, get in to see the doc your managing your thyroid levels with ASAP. Your medicine will need adjusting for the health of your baby. I wish I had known this when I got pregnant (because you know how those “what if’s” work).

@mala808 I share your frustration and your advice to advocate for getting thyroid levels tested while TTC. I had a very similar experience to you (two losses and a third pregnancy before OB tested my thyroid, even though I had a history of subclinical hypothyroidism..) Maddening, to say the least. I would be due this month with the first baby I MC had my OB provided a basic level of care.

@mala808 I was diagnosed with Hashimoto's as a kid and I've been medicated since, but I can reinforce that monitoring / medication management totally changes in a ttc / pregnancy context BECAUSE blood levels that would be considering subclinical / borderline / extremely mild can have very a significant impact on fertility / maintaining pregnancy. My doctor raised my dosage as soon as I told him that we were going to start trying, has me come in to check levels more often, and will raise it again as soon as I do get pregnant again. Definitely worth looking into and staying on top of.

@gladdadof4 Sounds like you have a great PCP! I’m still trying to figure out which of my doctors I trust with monitoring my thyroid levels during this ttc journey.

@mala808 I do! I actually found him because he specializes in thyroid issues and is very holistic. I might do some research into endocrinologists in your area that focus on thyroid problems - having someone who knows what they are doing and will LISTEN to you is so key, especially given the narrow margin required for ttc.

@mala808 Thank you for sharing this. I had my PCP/OBGYN run bloodwork during Cycle 6 (CD3 stuff as well as other tests my PCP wanted). I have had major fatigue and once my results came back deficient in Vitamin D my doctor was certain that was all that was wrong. Here I am now not feeling any less fatigued and realize I never found out my actual TSH/T3/T4 numbers because they were “normal” which I know can mean they were within range but not conducive to pregnancy. I just got them redrawn a week ago and hope to look at both results and get some answered.

It’s frustrating to advocate for further investigation but I’m hoping you were spared further cycles of disappointment by trying to address this now.

@mala808 Thank you for sharing! I also have hashimotos and was "normal" with a TSH of 3.5-3.9. I mentioned to my doctor (and obgyn) that I thought it needed to be lower and they wouldn't do anything until after 12 months I wasn't pregnant.

Go to an RE if you can. I'm going to my second appointment today, but Hashimotos is known for fluctuations and when you do become pregnant it can fluctuate a lot. The baby will rely on your thyroid for the first 20 weeks and you need to be closely monitored in that time.

@mala808 You're right about the TSH 1-2 or 2.5 range, for sure! That is the recommendation from TES and other organizations. I hope they will listen and adjust! How frustrating that you have to tell them this, rather than a doctor being on top of it. If it's of interest, I can add some links to the published research, my PCP referenced a few when she gave me overview of hypothyroidism/treatment.

PS- If you have biotin in your prenatal, that can impact the TSH test measurement, among other panels.

@cristal19 Wow, I have never heard that before. Do you know if it's recommended to note take biotin at all or to just skip the prenatal before labs? I really need to get a referral for an endo. My PCP kind of sucks and didn't even want to test my thyroid when I told him I was pregnant. My OB ended up doing it for me after I miscarried. After learning this I'm not sure I can trust those results. TSH was the lowest it's ever been and I've been consuming 35 mcg of Biotin in my prenatals.

@kathy01 My PCP told me to stop taking prenatals with biotin for 3 days before the labs and to replace it with at least a folate supplement in the meantime if we were actively ttc. The biotion interferes with the assay they use to test the blood sample, but it doesn't actually change the TSH level in your blood. I have two bottles of these prenatals and then I think I'll just find one without biotin to make this easier since I'll prob have to be monitored a few times. Currently waiting to try until my thyroid levels look better!

@cristal19 The prenatals have been making me nauseous so I was thinking about switching to folate anyway based on OB's advice. Gah, now I'm frustrated. Another mc is the last thing I want to go through and would hate myself if it happened due to something that could have been prevented. Thank you so much for sharing this, I am very grateful.

@cristal19 Yes yes! Links please!

Also, I need to check my prenatal for biotin.

Thanks!

@mala808 Sorry for the slow response, I went down a rabbit hole reading! I work in biotech so I have access to a ton of journals. I hope the links work for you but at the very least the abstract and conclusions should be visible.

My doctor referenced a large, multi-year study on subclinical hypothyroidism (SCH) out of a group at Parkland Memorial Hospital. In women with untreated SCH, they concluded the following: 2x higher preterm delivery rates, 3x increase in placental abruption, higher rate of infants in NICU. The lower IQ is thought to be linked to preterm birth. There is a larger review published in NEJM last year that found no benefit to treating SCH in terms of cognitive outcomes, though the treatment began between 8-20 weeks of gestation, not prior to conception. Their recommendation is not to screen all pregnant women.

Most studies about sub-fertility and TSH levels are done in the setting of reproductive assistance so there aren't any clear studies on how treatment of SCH could increase conception odds. Since there is decent evidence that outcomes improve, it'd be unethical to leave some untreated!

• TSH>4.2 was treated in women visiting an infertility clinic for the first time. 76.6% of those treated conceived within 6 weeks to 1 year. (Study didn't include patients with blockages or MFI)
• TSH reduction from on average 5.46 to 1.25 resulted in 84.1% of infertility patients conceiving via ART or spontaneously
• The data around IVF and TSH levels has a lot of variance in their conclusions. This recent meta-analysis concludes is LT4 treatment does decrease miscarriage rate.

This literature review and guideline article is really comprehensive. It is an updated 2017 version of a review done in 2011- so there was enough new research that it was worth updating and revising that after a few years! Overall there is variability in what different studies use to define SCH so that 2.5 to 4.5 range is a bit of a gray area. It does seem that the overall prudent recommendation is a TSH target of 2.5 across many sources, though. And when women are treated, pregnancy outcomes look the same as those with normal thyroid function.

I'm by no means an expert on this, just have some experience with reading through this type of stuff. I would love to get input/corrections/clarification from anyone with more scientific knowledge in this area!

@cristal19 And way you could share a link for the prenatals you've been using? I haven't had much luck finding anything without biotin.