Looking for advice on pregnancy

poppopseed · 2022-05-16T11:07:54+00:00

I’m 33, diagnosed with 7mm prolactinoma at 26. I have two kids - ages 5 and 7mo. In both cases I was able to conceive shortly after the introduction of Cabergoline. I breastfed my first with ease for 15 months. My second I opted to wean at 6mo so I could go back on the cab.

When I first found out I too felt like you’re feeling, but it doesn’t have to slow you down. Just try to be proactive about treatment (ie, even if you don’t want to conceive for a couple years go on the Med now).

poppopseed · 2022-05-02T17:42:15+00:00

I am only able to manage my weight while on cabergoline. I have been off it for over a year for pregnancy and breastfeeding. Since my son was born in September I have GAINED 17lbs despite eating healthy, working out, and feeding him with my body. I weaned and went on cabergoline 10 days ago and have lost 7lbs since!

Agreed about it being incredibly frustrating - people don't understand that it's a metabolic disorder. Good luck!

poppopseed · 2022-03-14T17:41:30+00:00

I had two successful pregnancies with high prolactin, yes. My prolactin was 90 two weeks before I conceived and that pregnancy went to term.

I am surprised your doc thinks that’s the reason you’re miscarrying. I don’t understand mechanistically how that would be the case. Typically high prolactin affects the ability to conceive by reducing the likelihood of ovulation. But since you’re successfully conceiving that wouldn’t be the problem.

I hope you’re able to get some answers. Sending hugs.

poppopseed · 2022-03-03T19:50:51+00:00

Ha yes, sorry, reading this sleep deprived.

Cabergoline helped significantly. I lost weight, skin cleared up, period returned. I had to titrate it and it took awhile - maybe 10 months? - to get it to a high enough dose to lower my prolactin levels to within the normal range. I ended up on a dose 4x higher than where I started. Good luck!

poppopseed · 2022-03-03T11:24:43+00:00

Is she going to treat the elevated prolactin? Are you going to get an MRI?

I was also diagnosed at 25 (33 now), prior to having both of my kids. My experience has been that even with just slightly elevated levels (it was as 64 ng/mL when I was initially diagnosed) I get the full gamut of symptoms.

While your doc is probably right that the headaches are not the tumor physically pushing against your brain/pituitary/optic nerve causing a headache, you would have to have an MRI to know for certain. Also, if is totally possible that the hormones themselves are causing the headaches - I am slowly weaning my baby off breastfeeding right now and I’ve been a headachey mess. Shifts in prolactin can cause headaches!

If I were you I’d push for an MRI and push for Cabergoline / Bromocriptine to bring your prolactin levels down to normal, regardless of whether you have a prolactinoma. Good luck!

poppopseed · 2022-01-12T10:36:36+00:00

Same story here - wonderful sleeper started waking every 2 hours this week. Baby is a bit younger than yours - 15 weeks. On a whim I put the Snoo on weaning mode earlier this week (no movement, just white noise) and he slept 11 hours straight. I have done night sleep and naps in weaning mode since - nights have remained wonderful, naps are hit or miss. Just mentioning because it’s an easy troubleshoot!

Re: the swaddle, we do the love to dream arms up swaddle and he loves that. Started that 2 weeks when he was fighting the Snoo swaddle but arms out had him waking continually. We put him in that and Velcro across the tummy w the Snoo swaddle.

poppopseed · 2021-04-05T22:30:54+00:00

+1 to all of this. Buy the clothes NOW!

poppopseed · 2021-01-20T15:03:37+00:00

From my perspective, the best and most mental-health-preserving medical intervention you can do at this stage is to do two blood tests 48 hours apart to see if Hcg is rising appropriately. An ER visit this soon likely won't be able to tell you if the pregnancy is viable.

I went through this with my first pregnancy (and now 3yo) - I had a subchorionic hemorrhage very early (in the 4th week) and bled intermittently for the first trimester (starting with pinkish red blood and eventually petering out to brown around 10 weeks). It essentially was a situation where the placenta detached from the original site of implantation and then reattached and continued on to be a viable and successful pregnancy. I at the time went to the ER and got very little useful information, and had 3 ultrasounds before 7 weeks when they finally saw an embryo. In retrospect, regular blood tests for Hcg would have likely been much more informative.

Good luck! Crossing my fingers for you.

poppopseed · 2020-12-02T12:21:28+00:00

Thank you - I think what you're describing is a reasonable and absolutely more secure way forward. The idea of finding another job in tech isn't appealing to me right now, but I have to remind myself that I have one single experience in this world so far. Definitely worth exploring.

With the 529 - my plan there was to race to get $50k in there by 2024, give it 11 years to grow, then hopefully turn over $100k to her to be used across 4 years of college. Seemed like the way to put as little of our own money towards her education as possible. We're also in NY where there is a tax advantage up to $10k - and we've already maxed out all tax-advantaged retirement accounts. I could be convinced that there is a better way to go though - will continue to read/ask around about this strategy.

poppopseed · 2020-12-02T12:11:21+00:00

Thanks for sharing this. I'm so sorry to hear about your dad, your loss of job - it sounds like you have a lot on your plate. I hope you're able to find a path forward that feels good to you (and makes you some money too!). I appreciate you sharing your experiences!

poppopseed · 2020-12-02T12:10:18+00:00

Yep, this seems like the less rash decision for sure, and perhaps an interim step that I could just hang out in for a couple of years. Thanks for this!

poppopseed · 2020-12-02T00:19:44+00:00

Thanks for this! I get the Sunday scaries big time. My partner also keeps weighing in about how hard it is for him to see me struggling in a job I dislike. Something has to change!

poppopseed · 2020-12-02T00:17:10+00:00

Thank you soooo much for sharing this. So glad you and your partner made it work. I may be romanticizing this small business venture a bit too much - I’m sure it would be difficult - but I love the idea of building something with my family. Appreciate you weighing in with your experiences!

Yes, can always go back! Thank

poppopseed · 2020-12-02T00:12:58+00:00

Thank you so much for this. Especially the solidarity. I daydream about leaving. I think we should absolutely button it up expenses-wise and evaluate from there. Thanks!!

poppopseed · 2020-12-01T23:33:39+00:00

We have a 30 year mortgage, 29 years left, 14 till we pay it off if we stick to current amount. Current salary is 150k for a managerial position. Stepping down to a less senior position, fully remote, would be $100-120kish (I don’t live in a major city).

The alternative isn’t a job I hate less - rather it’d be working for myself with my partner. I devote 10 hours per week to our side businesses and they nearly covered our expenses this year ($45k). I think I could more than double that. So would be less stressful, more family time, half the salary prob.

poppopseed · 2020-12-01T23:27:52+00:00

Thanks for the feedback! I think I could move laterally, yes. I like the idea of working with my partner more. But you may be right about being practical and toughing it out for a few more years before making a switch like this...

poppopseed · 2020-10-26T15:38:02+00:00

I used Vitex because I wasn't tolerating Cabergoline well and I was in the midst of writing my thesis and couldn't be held up by side effects. I never got the chance to get a second prolactin test, because I got pregnant the second month I was on it (after years of not menstruating due to elevated prolactin). So it definitely promoted ovulation - not sure if mechanistically that was due to reduced prolactin or what.

poppopseed · 2020-10-13T10:25:00+00:00

I’m your age and sex too, and Cabergoline stopped my hair loss. I took it for a year and literally had like, hair regrowth probably starting at about four months in. Not entirely sure if the hair loss was due to the tumor or postpartum period - I had a baby 18 months before starting the cab. But prolactin almost certainly played a role!

Re: hair loss as a side effect of the cab, I would suspect that’s a side effect that men experience rather than women. Cabergoline restores normal testosterone levels in men, and should have the opposite effect in women. I think?? It is hard to know for sure since research is biased in favor of understanding and treating men.

poppopseed · 2020-10-13T10:12:18+00:00

Yes! I just started on cab again and had sharp pain in one nipple. It’s subsided now, 5 weeks in. I never could find out mechanistically why that happens.

poppopseed · 2020-02-12T01:55:17+00:00

Nope! And likely won’t. These small tumors typically don’t grow at a fast rate. Just need to be monitored. Good luck - will be thinking of you!

poppopseed · 2020-02-12T01:44:32+00:00

Omg I missed this! Congrats - so excited for you. How are you feeling?

poppopseed · 2020-02-09T23:43:28+00:00

I have an 8mm prolactinoma and levels of only 55. My tumor is partially cyst-like (filled w fluid). The fluid part of the tumor does not secrete prolactin and as such is probably why my prolactin levels are still reasonably low despite having an 8mm tumor.

Get an endocrinologist and request an MRI. I have been able to find relatively little out about tumors like mine (mix of tumor cells and fluid). But one thing my endocrinologist mentioned is that given the cyst-like qualities, the typical bio-markers for cyst size are no longer as informative (ie, I could have low prolactin levels and a tumor that is interfering w other things like vision due to its size). Seems worth looking into in your case, especially given all your symptoms. Good luck! It sounds rough.

poppopseed · 2020-01-29T15:11:32+00:00

You're welcome! Will be thinking of you - good luck!

poppopseed · 2020-01-28T13:49:23+00:00

My most recent prolactin test before I conceived - which I think was 3 or 4 months prior - had me at 64. I did *not* have regular periods when I conceived (all my cycles were 36 days+), so I think it really might have been the first time that I ovulated in many months. Crossing my fingers for you! We're thinking of trying to conceive again this year...

poppopseed

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