I want to cry after talking to my RE's nurse/ Advice appreciated

LO95 · September 2014

Guys, I had the nastiest experience with a nurse at my RE's office today.

After seeing all of your responses to my question about when to stop progesterone I called the IVF line to ask about why I'm stopping Progesterone. Her response to me was, "You don't need it." It was so short that it really didn't leave room for discussion, but I pressed on. It went a little like this:

Me: "Well, I surround myself with infertility friends and many of them are concerned for me because they don't understand why I'm going off this so soon."

Nurse: "Everyone is different. They're doing different things than you."

Me: "Well, I have a friend down the hall from me at work right now who just did IVF and was on progesterone until 11 weeks."

Nurse: "You're a fresh cycle. She was probably frozen." (No, she wasn't but I didn't argue this.)

Me: "Okay, could I at least do a blood draw to check my level?"

Nurse: "No, that won't do anything."

Me: "So I can't even figure out what my level is right now?"

Nurse: "That won't do anything."

Me: "Okay, I guess I'm just concerned about this and not understanding why I can't stay on progesterone. If something goes wrong between now and stopping this early I will have to live with that and I just don't want to risk it."

Nurse: "Most people are just happy to go off progesterone."

Me: "Yeah, but I don't mind taking it if I need it...."

Nurse: "Dr. _____ would never do anything to hurt you or your baby. He must have liked what he saw. You had a strong heartbeat. It's fine."

Me: "Okay, I guess I'm just wondering if I can stay on it anyway."

Nurse: "This is what we do every day. We do this every day."

Me: "I'm not trying to be snarky with you, but I am genuinely concerned about this."

Nurse: "Okay, why don't you just take one pill a night then until you run out?"

Me: "Does this cause birth defects? Why did Dr. ____ say to stop taking it immediately?"

Nurse: "You're fine. Just take one a night until you run out."

WHAT THE HELL, guys?! Did you notice in that convo that my question was never answered. "Why am I stopping?" NEVER answered.

In the meantime I had my work friend call her IVF office for me and her (nice) nurse's words were: "We don't like you to go off until the placenta can take over. So we recommend 10 weeks."

WHAT THE HELL!?

I'm at a loss. Do I use the refill on the bottle and go get more and take the same dose anyway? Do I call and demand to talk to the doctor. I was in tears at the end of this and I know I won't sleep tonight. I guess I would just take the meds and say screw them, but God forbid something happens and I went against advice I would always question that too. I'm just pissed that I have to be a researcher here.

kmc84 · September 2014

I'm sorry they won't give you an answer. I was always told that you stay on until the placenta takes over, and that makes sense.

If I were you, I would keep taking the progesterone until 10 weeks. You may be fine to stop now, but it's the 'what if' that would make me stay on it.

I'm sorry she was nasty. You shouldn't be expected to take medical advice without understanding the why behind the decision.

pltsou · September 2014

According to recent journal papers, stopping it early should not affect much if the baby is healthy. But I really don't like the nurse's way of treating you. You SHOULD demand to talk to the doctor or call back and ask to speak to another nurse. I'd write a letter of complaint if I were you, bring it over to the office and handed to the doctor or whomever is the senior physician.

gsancho · September 2014

Being that they never checked your levels, I'd just keep taking the progesterone until 10 weeks.

indianaalum · September 2014

I was a fresh cycle and my numbers were never checked and I stayed on it for 11 weeks

(though, I am alot older, which I hear does affect how much is produced)

Mrs.McIrish · September 2014

I'm sorry she wouldn't give a medical answer for stopping. There is no way I would stop progesterone this early. I have no issue with self medicating in this situation. I'd refill the script and keep taking. I have been known to increase my p4 dosage when I felt it was necessary.. I just wouldn't tell them.

LO95 · September 2014

indianaalum said:

I was a fresh cycle and my numbers were never checked and I stayed on it for 11 weeks

(though, I am alot older, which I hear does affect how much is produced)

See? And this is what my IVF friend down the hall from me at work did. I asked her very specifically if they were concerned at her office about her ODing and she said "no, they never checked" her levels and she was on 1 200mg in the morning and 1 200mg at night just like me!

My sister-in-law is a nurse practitioner and while she doesn't know anything about IVF she said it concerns her that the doctor said to stop immediately. She said it's not a good idea to keep taking something after a doctor said to stop taking it. She then said that the nurse was an idiot for saying to just take one if it makes me feel better because she's basically going against the physician's order. Her advice is to call the doctor, but I hate this so much because I know he's going to be pissed that I called him.

I guess this just further confirms though that this nurse was so off today when my sister-in-law is calling her out on making that comment.

pblge · September 2014

I'd bet money that the nurse didn't give you an answer because she doesn't really know it, which would also explain why she got snippy. I've run into some pretty ignorant medical professionals in the past few years.

What really gets my goat is that she refused your very reasonable request to check your levels. THAT seems really unethical to me. She's flat out wrong that it wouldn't change anything. What if it came back super low? Even non-IVF pregnancies get supplemented with progesterone sometimes, too.

As others have said, it does seem like a good bet to keep taking them longer. I'd also add to try to get thee to an OB as soon as you can, and talk to him/her about your concerns.

Sorry you had to deal with this!

ladyteach0505 · September 2014

ladyteach0505 · September 2014

@pblge That's a great idea I hadn't thought of! When do OBs see you? I'm supposed to graduate at 8.5 weeks assuming this goes well. I've been scared to call the ob and make it official but I wonder if they check progesterone anyway. Hmm

Ugh my old account keeps coming up- this is lo95. Sigh...

ccam · September 2014

It sounds like the nurse couldn't answer your question and instead just danced around it. I would call and ask to speak to the Dr. That's what they're there for and you have every right to have your questions answered.

If you have to speak to a nurse again, ask for a different one. And explain that although you know the staff is looking out for your best interests, you just want to know the reasons behind it. And express your concerns.

I'm sorry you were treated like that! I think some nurses/Drs expect patients to take their advice without question.

southernyankeegirl · September 2014

The placenta should start taking over by week 7.5 or so, probably earlier. By measuring the yolk sac during an ultrasound, they can determine if it is likely producing sufficient hormones to support the pregnancy (or this is how my doctor explained it anyway).

I stopped progesterone (IUI cycle) at 7 weeks and was petrified as I had similarly never heard of someone going off that early. Everything is fine with me at 22w still.

That said, I'd refill the prescription and keep taking it. The added stress of worrying about it is worse for your body than a few more weeks of progesterone, I'd imagine!

ETA: Call the doctor. Seriously, he can STFU if it annoys him. He shouldn't hire asshole nurses who can't explain jackshit if he doesn't want to have to talk to a worried patient himself. You paid a lot of money for his services - that includes follow up care and answering your concerns adequately. You have every right to demand an adequate explanation.

weansworld09 · September 2014

I agree with PP. Keep taking it for now, but get ahold of the physician. It drives me crazy when nurses or front staff just bulldoze over people. I had a fresh cycle, I just turned 29 & took progesterone oil 1ml daily through 10 weeks & they also never checked my levels. We had a good strong heartbeat & sak at 6w4d too on our u/s.
If it were me, I would call and say you have a question for the Dr. Hell, I've even spoken to other physicians in my RE practice, and when they could see I was concerned/unsure still they always offered to have my usual physician call me back when he was in the office again, which he did. Love that man, he has impeccable bedside manner, but I digress.

rox825 · September 2014

I agree to just keep taking it and call the dr in the meantime. Not sure of the protocol for IVF cause I did IUI, but I was told by my RE and OBGYN to stop at 9 weeks and was fine, but 6-7 weeks does sound kind of early. Good luck!

AMShark · September 2014

I like @pblge 's advice to find your OB and put the question to him/her. You'll need to find one eventually anyway, so why not find one now?

Margritli · September 2014

I know that this is a little different from what others said, but my RE instructed me to take the progesterone until it was proven to be a viable pregnancy (i.e. normal measurement(s) and heartbeat(s)). For me, that was 8 weeks and 4 days. I understand why you are frustrated with the nurse/RE, but I have always wondered if progesterone supplements really do much, because my body did a poor job absorbing them.

KT416 · September 2014

I agree that the nurse probably gave you a snippy answer because she probably doesn't know the medical reason is just following instructions. If possible, could you talk to your RE directly?

I had my last monitoring appointment right before 7 weeks and then my RE instructed me to stop PIO at 10 weeks, but my dosage was cut in half after my last appointment.

Sophistikitty · September 2014

I am so sorry you had to go through that and still didn’t end up getting an answer.

If I were you I would continue on the same dose you are on until 10 weeks. That is the earliest any of the clinics I know would take you off without checking progesterone values in a fresh cycle. This is your baby and your body and you have to be comfortable with your choices. I wouldn’t feel badly going against your doctor’s wishes in this case.

Also from what I have been told by the RE’s I have seen, Endometrin does not show up in blood results (at least not to a very large degree) so if you are soley on Endometrin (if your blood levels were to be tested) the level would be a fairly accurate reflection of your progesterone. This is one of the reasons many clinics put patients on Endometrin and PIO – they can wean patients off PIO and still be assured that there is very little chance of the P4 diving. Then they can more easily follow the patients natural levels soley on Endometrin. That being said even if your RE was to agree to test your levels, he would probably only agree to do it once and at 6 1/2 weeks I would be concerned that the placenta hasn't fully taken over.

I would definitely just refill the prescription and continue until 10 weeks.

Edit: Just realized you are on Prometrium not Endometrin but the same applies.

chucktgirl · September 2014

Whoo boy. That sucks. I'm sorry you have to deal with this. I'm shocked that the nurse did not confer with your RE after you specifically asked to continue and for a blood test. It's not up to the nurse to decide those things. So, in your shoes, I would be as nice as possible and request a call-back from your RE. I would also absolutely refill the script and continue taking the progesterone. My understanding is that extra will not harm you or the fetus, but a shortage certainly can. I am also surprised that they are not regularly testing your blood progesterone! Mine got checked every single week! It's hard to challenge a doctor, but I've learned the hard way that I must do whatever it takes to get the best care for my fetus and me, and sometimes that's a hard path and it means making difficult choices. I hope you get a real answer soon.

ladyteach0505 · September 2014

I'm literally having my husband call because I feel so beaten down by the office. With a few exceptions the staff is so dismissive and after yesterday I literally dread the thought of calling. I'm hoping if DH talks to him he can do the man to man thing and maybe skip the talking down to part. Fingers crossed he calls back.

(LO95-this is my mobile account since I don't remember my other password. Sigh)

AMShark · September 2014

@LO95 - There's no shame in having DH call. I think its a good solution, that will (hopefully) get you answers, while protecting you from some un-needed stress.

southernyankeegirl · September 2014

I am a total feminist - I'm a strong woman who can take care of myself. But there is zero shame in having your husband handle an issue when it will be a) easier for you and b) possibly more effective.

I've unleashed my husband on problems that just aren't responding to me. Often that's all it takes (it doesn't hurt that my husband is rather intimidating) ;-)

hopeby2015 · September 2014

Any updates from when your husband called?

intheplanningstage · September 2014

I hope you got this resolved! I get so frustrated when doctors act like you don't have a right to be concerned with your own body and child!

LO95 · September 2014

Oh my gosh. Guys, my husband STILL hasn't gotten a call back and now we're heading into the weekend. I'm on the prometrium until I hear that it's bad. But this makes me mad.

kflynn81 · September 2014

I had a somewhat similar experience with the Estrace....without the snark from the nurse. They took me off it at 5 weeks instead of 8 weeks like I was supposed to be. I didn't question but the NP that I happened to meet with caught it and put me back on it. I'd question this one until I got a good answer. Maybe ask to leave a message for the RE directly?