Anybody have low progesterone AFTER being on progesterone supplements?

[Elphabaa77]

I apologize in advance for how long this post is, but I felt I needed to add a little background information.

I am feeling a bit discouraged. I knew the moment I was pregnant that I would be on progesterone supplements. With my PCOS, I also appear to have luteal phase defect which is probably why it's been so hard for me to get pregnant naturally. My progesterone falls off at about 9-10 dpo and AF arrives by 11dpo. After over 2 years, 4 clomid cycles, and an IUI with injectables cycle, we actually ended up pregnant on a completely natural cycle. So the second I was sure the test wasn't an evap, I got in to the Reproductive Endocrinologist's office. Sure enough I was pregnant, and sure enough, my progesterone was 8.8 at 10dpo. He put me on prometrium twice a day, vaginally. I never had any spotting or cramping. My 7 week and 9 week ultrasounds showed a baby that measured spot on, had a strong heart beat, was wiggling around, and overall was just perfect.

But I was also seeing my new OBGYN on the side, in preparation for him taking over when I was released from the RE. The OBGYN is a STRONG believer in progesterone support, especially in women with PCOS. He wanted me to have a more detailed progesterone test done that had to be sent to the Pope Paul VI Institute in Nebraska. That progesterone test at 6 weeks came back at 9.3. Again I say, I never had spotting or cramping. Not once. All the same, he pulled me off the prometrium and put me on bioidentical progesterone injections from a compounding pharmacy twice a week. Then we were retesting in 2 weeks. That test was Monday, I am technically 10 weeks now. The test came back 7.3. So my progesterone just keeps dropping, but we've increased the support. I still am not spotting (other than after a vaginal ultrasound) or cramping. Baby was fine last week, but that was my last ultrasound. So now, in addition to the injections twice a week, I am back on prometrium vaginally before bedtime. So just once a day. Then we retest again in 2 weeks.

I just don't understand how with all of this progesterone support, my number is steadily getting worse. Especially since most women with low progesterone at least spot and cramp some. My RE wanted to take me off progesterone this week, but the OBGYN is now saying I will likely be on it my whole pregnancy. Then to make things worse, the progesterone test he sends to Nebraska is out of network with insurance at least once a month, but more often twice a month... I get an $80 bill. Plus my progesterone injection is not covered by insurance because the pharmacy isn't covered. At least the prometrium is just a $15 copay. So in progesterone support alone, I am paying $250 a month out of pocket and was told I probably would for the remainder of my pregnancy.

I guess what I am looking for is a little reassurance that I am not being taken advantage of. My OBGYN has been great so far and I hate doubting him. I understand how important progesterone is in pregnancy. I hate to get a second opinion from a doctor that thinks 'bad progesterone means nonviable pregnancy.' If I stopped the progesterone support and lost the baby, I'd never forgive myself.

So has anybody else out there ever experienced continually low progesterone even AFTER being on progesterone supplements? Or had to be on progesterone their entire pregnancy? With being on injections and prometrium, it just doesn't seem like my number should be so low.

 

[trumpetbeth]

My progesterone was at 8.5 at week 10 when they tested again and that was after 4 weeks of vaginal suppositories twice a night every night. They were super expensive too. They took me off of them at 12 weeks and I was really nervous. But your placenta takes over and I have been ok since! Good luck!

 

[messica]

Have you brought your thoughts directly to the RE and OB?

I know it can be tough for some women to be blunt but it's not hard for me lol. I'd point blank ask - WHY IS THIS NOT WORKING???

And then not leave until I'd gotten a reasonable explanation.



Tell them it's expensive for you.

Tell them you've become doubtful.

Tell them you don't want to stop because you wouldn't be able to forgive yourself if something happened but at the same time, are really freaked out it's not working.

Tell them you want to know WHY.

Tell them you need to know what their plan is if it keeps decreasing.

Tell them you need to know what else can you do and question if their plan is one you need to go to NOW as opposed to waiting any longer.



Don't be afraid to be your own advocate and get a bit pushy until you get some answers that can put your mind at ease!


I was on progesterone through week 8ish because ours was an IVF cycle (Endometrin suppositories) and now started back up with injections at 16 weeks (not due to low levels, but rather a history of preterm labor and with multiples p17 compound has been shown to help). I can't imagine low progesterone/subsequent supplementation not being covered by insurance! The Endometrin wasn't because it was related to uncovered infertility treatments, but the p17 certainly is 100%!

 

[Elphabaa77]

I have an appointment with my OBGYN tomorrow. It's my first official appointment, even though we've been in contact every week for awhile now. I was released from my RE at week 9. My RE would have removed me from progesterone at week 10, but the OBGYN is the one really pushing to keep me on it. The RE had no plans to retest my progesterone which didn't seem quite right either.

My progesterone injection is a bioidentical progesterone injection made at a local compounding pharmacy. It's where my OBGYN always sends his patients who need the injections. I plan to talk to him tomorrow though, since this pharmacy is not covered by my insurance. His head nurse seems to think I can be switched to the injections that are covered by the insurance, but since they aren't the same type of injection the dosing will have to be adjusted.

I did voice my concerns in an email to the head nurse yesterday. I am also diabetic, so I email my blood glucose test results twice a week to the head nurse. I told her that I believe stress over this progesterone issue is causing my blood sugar to be elevated at times it normally wouldn't. I mentioned my history of depression and anxiety attacks, but I haven't had to be medicated for it for years. It's only just now that the anxiety is creeping back up. So I had some high blood sugar levels. Nothing REALLY bad, but definitely elevated. I was baffled because I eat the same things all of the time on purpose to help keep the blood sugar steady. Then a coworker mentioned stress is bad for blood sugar. After that, I noticed all of my elevated levels were after times where my anxiety was really bad. The night I found out that my progesterone was still low at 10 weeks, I ended up having a pretty bad anxiety attack. My hubby had to talk me down and remind me to breath. The next morning and afternoon, my blood sugar was elevated higher than normal. Then yesterday morning was a very stressful morning at work, I had to deal with an unhappy customer among other things. So, my lunch blood sugar was bad.

Plus it probably sounds dumb, but my pregnancy hormones are not helping the issue. Things that would normally bother me, but I would brush off and not stress about... are stressing me. For example, how hateful people are being to Tony Stewart (NASCAR driver) after he accidentally struck another driver on the track and the driver died. It was an obvious accident, but people who don't understand dirt track racing and just see Tony as a hot head are calling him a murderer. ANYHOW, not saying that to spark an argument... I definitely don't need to anything like a debate over Tony Stewart to raise my anxiety. I was just pointing out the type of things I am really letting get to me. Also, Robin Williams suicide was a bit more sad to me than I should allow. I've cried over both situations, and the Tony Stewart situation has caused me to walk around with a horrible, overwhelming sense of dread.

Not normally things I would let get to me, but I can't seem to brush them off right now. So perhaps my pregnancy hormones are also making my anxiety over the progesterone issue 10 times worse. All things I will discuss with my doctor tomorrow. I am just hoping he can provide me with some reassurance, something his nurses aren't always the best at. They try, but they can't tell me things they don't know to make me feel better. Plus, if I could just hear baby's heart beat tomorrow, that would help me more than anything else. I just doubt he'll do an ultrasound (which is covered by insurance) or even the doppler at this point. I guess we'll see.

He has all but said I will be on progesterone injections my entire pregnancy unless my numbers make a complete turn around and stay elevated without progesterone. With all the bad results, I have very little faith that will happen but maybe I will get lucky.

 

[Dini]

Hi I just saw this post and realized we have very similar issues! I just got my progesterone tested and it was 9.7, just started taking progesterone orally yesterday and they are having me do a recheck tomorrow. Seems awfully early for a recheck but who knows, the RE knows what he's doing. I'm afraid I'll have the same problem, and unresponsive progesterone lol.

My DH has low morphology and I almost never ovulate but we also got pregnant on our own after multiple failed attempts at treatments and procedures. My RE has started managing me because I can't get into my OB until the 26th and they refused to prescribe my supplements because I haven't seen them in 2 years. That's when I was referred to the RE.

I guess we will see when my labs come back. It sounds like you are doing very well despite the progesterone issues. So maybe your body has found a way to deal without it and the placenta will take over soon and maybe you won't need it the whole pregnancy. Fx'd for you! Keep us posted!

 

[Elphabaa77]

Hi I just saw this post and realized we have very similar issues! I just got my progesterone tested and it was 9.7, just started taking progesterone orally yesterday and they are having me do a recheck tomorrow. Seems awfully early for a recheck but who knows, the RE knows what he's doing. I'm afraid I'll have the same problem, and unresponsive progesterone lol.

My DH has low morphology and I almost never ovulate but we also got pregnant on our own after multiple failed attempts at treatments and procedures. My RE has started managing me because I can't get into my OB until the 26th and they refused to prescribe my supplements because I haven't seen them in 2 years. That's when I was referred to the RE.

I guess we will see when my labs come back. It sounds like you are doing very well despite the progesterone issues. So maybe your body has found a way to deal without it and the placenta will take over soon and maybe you won't need it the whole pregnancy. Fx'd for you! Keep us posted!

Our stories are similar! I am glad you got into an RE that took the progesterone thing seriously. I also had a less than ideal OBGYN who didn't take progesterone seriously. I ditched her and now I am with an OBGYN who is 100% opposite in terms of how serious he takes progesterone.

Strange your RE has you doing oral progesterone, most have you insert it vaginally. If your numbers are low, I would ask about that. When you take it orally, your liver metabolizes most of it and very little of the dose gets to where it needs to be. When you do it vaginally, it's absorbed through the vaginal walls where it enters the bloodstream, but it passes the uterus before heading to the liver to be metabolized. Therefore, doing it vaginally doesn't show up as 'strongly' in a progesterone test. The best method for insuring that you are getting the most of the progesterone is to do injections. Honestly, I prefer the injections to the grossness the pills cause as they seep out of the vagina. Of course, now I am doing both.

If you do need injections, let me warn you that they are VERY intimidating when you see that needle they use... but my husband gives me my injections and they almost NEVER hurt. The site will be tender the next day, but the injection itself I barely feel. He has to give me 2mL over the course of 2 minutes... so that needle is in there a long time too. I actually had the giggles last night during my injection and was kind of horrified that I couldn't stop laughing with that big needle in my butt... but then he starts laughing too! All was fine though. So don't be TOO terrified of the needles. It's all in a person's preference, but I find that I prefer the needles to the suppositories.

My OBGYN also does a different progesterone test than 99% of RE's and OBGYN's do. He sends my blood to the Pope Paul VI institute in Nebraska for a more in depth analysis of the progesterone issue. Apparently there is a WIDE variance between the standard lab test most doctors do and the test done here, mostly because they have some fancy machine that's been around for years but since it isn't made anymore, most modern facilities don't have it. So even though this fancy test says 7.3, my numbers on a standard lab test could be over 20 and 'look' fine. So I often think my OBGYN is literally FISHING for problems... BUT if I lost the baby because I didn't believe these fancy tests were necessary, I'd never forgive myself. My RE wanted to take me off progesterone at 10 weeks. The OBGYN has no plans of taking me off of it at all. We just might back the dose off.

So, all just something to think about as you go through similar issues. Good luck to you!

Good luck!

 

[Dini]

Thought I'd update you, my labs from yesterday were good, progesterone went up to 40. Nurse said they my body likely started pumping it out on its own and the supplements boosted it even more. That being said I had a very small light pink spot on my panty liner after work tonight. No more spotting since so I'm hoping I just overdid it at work, but I'm really nervous that it's something more.

 

[Elphabaa77]

It's likely nothing, especially if it didn't recur. Anything could have caused it. True story and since my cousin isn't on here she won't mind me sharing. but when she was around 7 weeks she was super constipated and she was straining trying to take care of it. Well she started bleeding the next day. Doctor got her in for a scan and baby was fine. She fessed up about the constipation and the doctor said she likely busted some blood vessels in the cervix/vagina area when straining. So really, out blood vessels are pretty frail down there. So if it is just a spotting incident and no big clots, I wouldn't worry too much as long as it doesn't recur.

 

[Dini]

Well so far no recurrence. I think it was just from straining. I am going to call my OB tomorrow just to let them know so hopefully it will convince them to scan me on the 26th, because I girl I work with goes to the same OB and they made her wait until 14wks for a scan! But with my progesterone and fertility history I think they may do it earlier for me.

 

[Elphabaa77]

14 weeks!!! I would go crazy. Completely crazy! I had a scan at 7 weeks, 9 weeks, and then after I had a bit of an anxiety attack in front of my OBGYN, he scheduled another ultrasound at 11 weeks for reassurance. I am high risk for a number of reasons (age, diabetes, infertility history, borderline high blood pressure) though and it's easy for them to justify my ultrasounds with insurance.

Even my cousin was scheduled for a scan at 10 weeks and she's not high risk. She ended up in at 7 weeks, like I mentioned before, because of the bleeding due to straining. Then her doctor just did another ultrasound at 13 weeks for her. So she's had 3 as well.

Hopefully your doctor will get you in sooner than 14 weeks.

 

[Rhapsodi]

I haven't read everything but I think we have a lot in common. I had infertility issues for 5 years. After 2 years I found a dr to check my hormones and help balance them due to my mom having estrogen receptive breast cancer. I saw a NaPro dr (who works with pope John Paul institute). Found out I likely have endo but my estrogen wasn't high, it was low as was progesterone and cortisol.

I was put on progesterone suppositories during luteal phase to help balance things. We were trying but not seeking help.

I got pregnant in February was put on progesterone right away (we knew I had low progesterone). It was so low and I was dealing with bleeding that I was taking 800mg/day! I was weaned down to 200mg/day in the second tri. I'm still taking progesterone as it is still on the low side. Could I be ok without yes but we are not taking any chances. My last level was the highest at 61mg at 27 weeks (I think).

This is the site I reference and I know my dr uses something similar. I know my lab is sent out but not sure where. https://www.naprotechnology.com/progesterone.htm

Hope that helps.