Doc: What exactly is going on?

April 3, 2016 3:44 PM

YNMD. I have been trying to get pregnant with my spouse for 6 months. My period, while irregular, is several days late from my longest cycle, multiple home pregnancy tests have been negative, and I don't really know what to do next. More medical history & some planned next steps below. With this ask, I am looking for advice about what to ask my doctor/next steps I should take.

- I was diagnosed with PCOS when I was 13, but multiple doctors have questioned this diagnosis throughout my life. This year my endocrinologist ran some blood tests and told me that I do not have PCOS.
- I have hypothyrodism and take synthroid for it. I have been on the same dose for 5 years with test every year, including after I went off the pill this year. I was diagnosed with hypothyroidism when I went off the pill 5 years ago and after six months my period stopped.
- I have been off the pill for 6 months & trying with my spouse, charting my temp and checking my vaginal fluid. I seem to be ovulating, but charting this stuff is hard (I think). My cycles have been anywhere between 32 days to 42 days with an average of 38 days.
- I am now 46 days and counting & have taken 4 home pregnancy tests. Two were "right away in the morning," & all were negative.
- Reasons why I think I might be pregnant: late period and, for the first time in my cycle, I had some very very light, one time-incident spotting around day 32.
- Reasons why I think I might not be pregnant: negative pregnancy tests & the last time I went off the pill, my period stopped completely after 6 months. I got back on the pill & started taking synthroid at the same time.

What I have done so far:
- I saw my gynecologist (who is not an OB). When I told her all of the above, the nurse asked me if I had "gotten my blood tested," but it was just after we talked about my hypothyroidism & I assumed she was referring to that & said yes. Afterwards, I realized she might have been asking me if I had had the blood test for pregnancy? But surely my gynecologist would have ordered that if she thought it was necessary?
- I am thinking about calling my endo and asking her if she'll look at my lab results again to make sure everything is OK with my thyroid since my period appears to have stopped again. I feel like maybe I am being silly though or that this is overkill?
- Because I had the PCOS diagnosis and because of my age (32), my gynecologist has given me a recommendation to a Reproductive Center. That appointment is about a month away.

My questions:
- What, if anything, should I do between now and my appointment with the Reproductive Center? Should I ask to have the blood tests either to check my thyroid level or to see if I am pregnant? A lot of people talk on the internet about home pregnancy tests having a lot of false negative, but I feel like I am being deluded by wishful thinking.
- When I go to see the Reproductive Center, what info would it be helpful for me to have? How should I present the charting info I've been doing? What questions should I ask? Should I do research on my own beforehand?

I find this to be pretty overwhelming and my google-fu is failing me. I feel like I find a lot of threads where people seem to be engaging in a lot wishful thinking (which I understand...that's the problem...I WANT to believe, but feel like I am just tricking myself).

posted by anonymous to Health & Fitness (12 answers total)

Ok, so one time bloodwork for PCOS came back negative? Did the endo run all of the basic hormones, have you do a 4 hour glucose test and then have you get an ultrasound of your ovaries before saying you don't have PCOS?
I would bring with me to the Repro doc all of my charting for sure. I'd also bring copies of all of my bloodwork and any ultrasounds I'd had done in the past that I could get my hands on. In reality, they'll probably order more bloodwork for you, order an ultrasound and then tell you to come back for results.

I have PCOS and am recently pregnant (though it was a chemical pregnancy) and I peed on an insane number of sticks. Of the brands I used (wondfo, First Response Early Result, First Response Gold Digital and ClearBlue Easy Advanced Digital with Weeks indicator), the ClearBlue Digital and the First Response Early Result were the most sensitive. They both gave positives at 10dpo. If I were stressing out about possibly being pregnant, I'd use one of those two brands again. Also, it can take 6-12 days for implantation and then HCG levels won't rise enough to be detected for about 2 days after that. So, if you implanted late, you might JUST NOW get a positive on a very sensitive test and that would be totally normal. If you do decide to test again, use second morning urine, especially if, like me, you consume a bottle of water through the night. Best of luck! Feel free to MeMail
posted by PorcineWithMe at 4:21 PM on April 3, 2016

Get the pregnancy blood test, even if just to set your mind at ease it is worth it.
posted by St. Peepsburg at 4:30 PM on April 3, 2016

This is SUCH an emotional roller coaster time, and I completely get your urgency, excitement, and concern from your post. Really, you just have two things to do at this particular moment: 1) confirm if you are pregnant or not - and it's still really early for drug store tests to be super-accurate, so get the blood test. 2) start preparing for being pregnant whether you are or not, which means getting a handle on the PCOS diagnosis and any potential complications from the sythroid or something else. In other words:

1. Breathe!!
2. Treat your body as it if is pregnant (start with folic acid etc) just in case.
3. Find an OB (you'll need one anyway) in your insurance network, line up an appointment
3.a Breathe again.
4. Get the HCG blood test
5. Get together every test and piece of documentation you can find for your Repro appt.
6. Breathe.

Good luck!
posted by nkknkk at 4:39 PM on April 3, 2016 [2 favorites]

I highly recommend paying the membership fee at fertilityfriend.com to use their charting app or desktop program and full access to their forums. The women there are experts. Ignore the sparkly signatures and euphemisms like "baby dancing" and you can learns ton about reproductive endocrinology and get some great input.
posted by Kriesa at 4:45 PM on April 3, 2016 [3 favorites]

I hope this is your big fat positive, but in the event that it isn't:

1. Keep charting
2. When you're close to your ovulation day (within 5 days) start using the Clear Blue Easy Ovulation tests. I used the cheaper ones that either give you an open circle or a smily face. This will tell you for sure if you're ovulating for not. My cycles were also roughly that long before this pregnancy, and I usually ovulated around Day 18.
3. Agree with Kriesa that you should use fertilityfriend.com. I was super happy with it. I tried using temping, I tried NaPro, and after a few months I was comfortable just using digital ovulation tests to predict my fertile window.
4. Make sure you're taking prenatal vitamins with folic acid now.

In the meantime, test again each morning. I am currently pregnant and was pregnant last spring with a miscarriage. Both times it took me a little while to get a BFP and when I finally did, my HCG levels were low both times. It matters that they double more than it matters what they are, but if you are someone whose HCG is lower during pregnancy, you will take longer to get a positive on a home test.

Good luck!
posted by notjustthefish at 5:06 PM on April 3, 2016

I know that you said you're charting temps and mucus, but the thing that finally got us pregnant after 6 months of trying was that I read somewhere that you'll know you're ovulating because when you wipe after your morning poop, everything will feel slick and hard to clean. My cycle is also longer than normal and my period tracker app was completely miscalculating--telling us to do the deed a full week too early. That month, I noticed everything was slick and glossy, we had sex that day and two days after, and now I have a 2 year old squirming on top of me as I write this.

Good luck! I hope this is your month, and if not, that everything will happen soon!
posted by PhoBWanKenobi at 6:45 PM on April 3, 2016 [1 favorite]

You could do all the charting and temperature taking and period tracking and hope that you've got it right, but honestly, it's much easier and more accurate to pee on a ovulation stick and KNOW that it's the right time, instead of second guessing consistency of fluid etc. I've done it both ways and I know which one I prefer. Good luck!
posted by Jubey at 7:21 PM on April 3, 2016

For what it's worth the ovulation tests never came back positive for me, even though I now have a happy healthy 18 month old. My basal temp measurements and similar symptom trackers were far more useful to me. The ovulation tests just don't seem to work for everyone.
posted by olinerd at 8:12 PM on April 3, 2016

I would definitely ask to get a pregnancy test - I'd guess you're not pregnant but it can't hurt and it's kind of excruciating to wonder for too long.

I also like the idea of having your bloodwork looked/redone by your endo - I don't think that's overkill at all. They should reevaluate your synthroid dosage - there's a level that puts you at acceptable generally and another level (less than one or one-point-five percent, if I recall correctly) that's ideal for conception/maintenance of pregnancy. (My OB put me on a low dosage of synthroid for subclinical hypothyroidism before I even saw the RE, so I think it's completely sensible to see your endo ASAP.)

If you're not taking a prenatal, start doing that. Consider getting some fertility friendly lube. You might as well get your partner to get a semem analysis now, it will just speed things along and present a bigger picture.

Oh man, good luck! I hope you have an easy road toward conception.
posted by vunder at 8:17 PM on April 3, 2016

one time-incident spotting around day 32.
-->Implantation and therefore spotting may happen between 5-12 days from ovulation. How many days since your supposed ovulation? Start counting from the day your basal temperature was suddenly higher on average. Did your temperature get suddenly higher on average? Is it still high? If yes, then there is a stronger chance you may be pregnant.

If your temperature didn't increase or increased and then dipped back down over time, then you may have had an irregular or non-ovulatory cycle. I would definitely make an appt to see the endo in this case.

I used the Kindara app on my phone for tracking my fertility. There were forums and instructional articles on tracking your temperature, including irregular cycles. They were very helpful at making the charting informative. My doctors have appreciated that I have good data on hand.

I've got pretty regular periods but have been late by over a week a few times, with negative home tests. Most likely due to stress or screwed up hormones from a recent miscarriage. When my temperature dipped back down I knew I wasn't pregnant, and sure enough a day or two later my period came.
posted by lizbunny at 8:17 PM on April 3, 2016 [1 favorite]

I'm a doctor (but not endocrine or OB) who also had issues with infertility, so just writing this as more of personal anecdote but from a person who's been somewhat where you are and also speaks medical language. I have PCOS and I agree that charting is really difficult when your cycles are irregular. It's also a huge pain in the ass to use the ovulation sticks if you don't have any idea when you're ovulating. Peeing on a stick for 2 weeks straight for ovulation detection and then peeing on way more sticks because you keep not knowing if you're pregnant yet or not is.... way too much peeing on sticks.

You're in a gray zone as far as the pregnancy testing goes. For the average person with a normal length cycle, 46 days should definitely be enough to show a positive on any drugstore test, it should be far beyond enough. Drugstore tests are usually sensitive to an hCG level of 15-50, which is very early pregnancy. The false negatives are generally defective tests, not being read right, or too dilute, and you're taking them first thing in the morning so they should be accurate from that perspective. But since we're not sure when you ovulated that makes it really hard. Medically speaking, it makes the most sense to just wait and keep taking home pregnancy tests, because it makes no difference whether the pregnancy is detected now or later (you should already be on prenatal vitamins and all that either way, and you generally don't go to an OB appointment until you're 6-8 weeks along) - however obviously for your peace of mind, it's a different story. So basically, get the blood test done if you want to (and I'm sure you want to!).

If your endocrinologist knew you were trying to get pregnant then I assume they already felt your levels were optimized enough for pregnancy 6 months ago. A reproductive endocrinologist may have a different view on it, but I suspect they're going to run that test on you in a month either way, and I doubt your own endo is going to do anything different than they did before (unless you didn't tell them about trying to conceive), so I would just wait on that, but it wouldn't be harmful to get it checked if you're really spinning your wheels and need something to do.

A side note on the diagnosis of PCOS. It is fairly straightforward. By the current guidelines for diagnosis, you have to have 2 of 3 of the following:
1. Androgen excess (on blood work, although features you might notice would include facial hair and/or acne)
2. Polycystic ovaries (on ultrasound)
3. Ovulatory dysfunction (signaled by irregular periods).

We therefore know that you have one of these criteria (called the Rotterdam criteria) if you have irregular periods. Your endocrinologist presumably checked your hormone/androgen levels i.e. testosterone level and those weren't out of whack. You could still have PCOS if you have polycystic ovaries, i.e. at least one of your ovaries has 12 or more follicles noted on ultrasound. I'm mentioning this because you are wondering about your diagnosis and you didn't mention getting an ultrasound. The current criteria for PCOS diagnosis did not exist when you were 13 - they were published in 2003. Feel free to MeMail me if you want to talk further about any of this stuff. Best wishes.
posted by treehorn+bunny at 9:52 PM on April 3, 2016 [4 favorites]

I am a woman with non-typical PCOS. My androgen levels are totally normal, but you can see the cysts on the ultrasounds and I have no kind of regular cycle whatsoever. That's enough to get the diagnosis, and minor PCOS treatment helped me conceive. Were you undiagnosed with PCOS based only on hormone levels, or did you have a transvaginal ultrasound to rule out cysts as well?

I was 31 when I learned I had PCOS, after eight months of post-pill charting without detecting any kind of regular cycle. Based on those charts, my OB ordered the blood test and the ultrasound and I had a diagnosis and treatment plan right away. I conceived very quickly using a low dose of metformin to help stabilize my cycle. I did the same thing when we tried for our second baby, and conceived right away that time as well. My doctor said that in her experience, women without the hormone aspect of PCOS have a good, fast response to metformin and often don't need to go on to more involved levels of fertility treatments.

As for what you should do, keep charting and bring in the charts to your OB and/or the reproductive center (I used FertilityFriend and printed them out, and my doctor actually added them to my chart). I'll tell you to stop researching, but I doubt it'll help - I remember that drive to do something about it, and sometimes the only something is research it to death. But just make sure that the sources of information you're seeking are not crazy-making - no babycenter or TheBump.com forums! Stick to FertilityFriend!
posted by peanut_mcgillicuty at 7:33 PM on April 4, 2016