AW: Help with RE problem? loss mentioned; all welcome

[tiresiastheblond]

This is VERY long; I'm sorry.

I was scheduled for the FET of my last normal embryo on April 9th.  After my last FET, which ended in a c/p that used up my other two normals (my third loss since I've been seeing this RE, BTW), I had an extensive battery of immunological and metabolic tests done, and the RE and I discussed modifications to the protocol (their usual estrace-only protocol didn't work for me, so we were doing a low-stim protocol designed to induce ovulation so I developed my own hormones and lining). One of the modifications I wanted to make was to skip the PIO. I had about 18 follicles (~6 mature) at trigger this time, and I really think that since they weren't retrieved, the corpus luteii (or whatever the plural is) will generate quite enough progesterone on their own. I converted an earlier cycle using this protocol to TI, and the unsupplemented P4 reading I had done (36, at just 2 dpo) backs this up.  I'm reluctant to add MORE progesterone because I've been struggling with high blood sugar, and I've read (and experienced) that high progesterone makes it harder to control.  I made this case to them weeks ago, and was under the impression that to go without PIO was to go against medical advice, but that it was my choice.

I obviously misunderstood. I called them this morning to discuss something else, and it came up that I had elected not to take the PIO. The RE has since decided to cancel my cycle and will not test my progesterone to be sure that's necessary.  I'm incredibly frustrated, because I've spent the last two months dieting, exercising, supplementing, and generally working EXTREMELY hard to get to transfer, and to have it summarily canceled against my wishes seems very unfair--it's MY embryo, after all, and all I want is for them to actually test my progesterone. If it's inadequate, I would obviously be just fine with canceling. The RE has conveniently made herself unavailable to meet or talk until the week after the scheduled transfer (she actually had their billing clerk call me with the news.  Classy).  This feels more punitive to me than anything else.  I'm assuming that she plans to terminate the caregiver relationship for noncompliance, which suits me fine, but I don't think she should be able to do so in the middle of a cycle without compelling medical reason.

Can anyone offer any tips, resources, ideas, compromises, lines of argument, or anything at all to prevent my having to waste this cycle?  I'm incredibly upset right now...

[dancerspose]

tiresiastheblond I am so incredibly sorry, all the (HUGS). I also can't believe how unreasonably your RE is being in not even finding time for a phone call! Is your RE a lone practitioner or she is part of a larger practice? If it's the latter is there maybe a way you can talk to another RE at the practice?

If that's not possible, since you RE is being so...well cruel, the only other option I can come up with is a pretty dishonest one. How would you feel about just telling the RE that you'll take the PIO but then just not doing it. I'm assuming you don't want to consider this without them testing your progesterone pre-transfer to see what it is, though. So, disregard all that...bad idea. Maybe there's a way that by telling her you'll go ahead with the transfer "on her terms" she'll test your progesterone if that's their protocol...my RE never tests progesterone post-ovulation so I don't know if that's a common practice.

Sorry, I know none of that was very helpful. I'm sitting here wracking my brain on what you can do. I will certainly reply again if I think of anything...

[tiresiastheblond]

Apr 5, 2016 20:41:54 GMT -5 dancerspose said:

tiresiastheblond I am so incredibly sorry, all the (HUGS). I also can't believe how unreasonably your RE is being in not even finding time for a phone call! Is your RE a lone practitioner or she is part of a larger practice? If it's the latter is there maybe a way you can talk to another RE at the practice?

If that's not possible, since you RE is being so...well cruel, the only other option I can come up with is a pretty dishonest one. How would you feel about just telling the RE that you'll take the PIO but then just not doing it. I'm assuming you don't want to consider this without them testing your progesterone pre-transfer to see what it is, though. So, disregard all that...bad idea. Maybe there's a way that by telling her you'll go ahead with the transfer "on her terms" she'll test your progesterone if that's their protocol...my RE never tests progesterone post-ovulation so I don't know if that's a common practice.

Sorry, I know none of that was very helpful. I'm sitting here wracking my brain on what you can do. I will certainly reply again if I think of anything...

Thank you so much for your response, dancerspose.  I don't think that's a bad idea, but they told me today that they don't CARE if I start PIO. Since I didn't start yesterday, it's TOO LATE and the cycle is RUINED.  I'm pretty sure that's not what they would have said if I'd told them I had accidentally forgotten, which is yet another thing that makes me think they're just being punitive.

[dancerspose]

Apr 5, 2016 20:47:23 GMT -5 tiresiastheblond said:

Apr 5, 2016 20:41:54 GMT -5 dancerspose said:

tiresiastheblond I am so incredibly sorry, all the (HUGS). I also can't believe how unreasonably your RE is being in not even finding time for a phone call! Is your RE a lone practitioner or she is part of a larger practice? If it's the latter is there maybe a way you can talk to another RE at the practice?

If that's not possible, since you RE is being so...well cruel, the only other option I can come up with is a pretty dishonest one. How would you feel about just telling the RE that you'll take the PIO but then just not doing it. I'm assuming you don't want to consider this without them testing your progesterone pre-transfer to see what it is, though. So, disregard all that...bad idea. Maybe there's a way that by telling her you'll go ahead with the transfer "on her terms" she'll test your progesterone if that's their protocol...my RE never tests progesterone post-ovulation so I don't know if that's a common practice.

Sorry, I know none of that was very helpful. I'm sitting here wracking my brain on what you can do. I will certainly reply again if I think of anything...

Thank you so much for your response, dancerspose.  I don't think that's a bad idea, but they told me today that they don't CARE if I start PIO. Since I didn't start yesterday, it's TOO LATE and the cycle is RUINED.  I'm pretty sure that's not what they would have said if I'd told them I had accidentally forgotten, which is yet another thing that makes me think they're just being punitive.

Holy crap, that's such bullshit! I'm so sorry. I'm sure it's a long shot, but I wonder if there's another RE who would do the transfer for you. Again, I'd imagine that's impossible with only 3 days, but I hope you're calling around regardless....

[dancerspose]

Ooh, I like @wineandcupcakes idea!

[wannabmama]

I still can't believe this. The fact that the RE won't talk to you is what makes me maddest of all. I don't know what the practice is like, structure-wise in terms of who else you can talk to, but if there's someone, that might be a good place to start. I like the idea of trying to get progesterone testing at least like @wineandcupcakes suggested.
Do you have other REs in the area you can try to meet with?
I just hate this whole situation so much. I wish there was something I could do!

[dream2be3]

tiresiastheblond I am so sorry you are having to deal with this situation. It makes me angry to hear your RE is acting so immature by not calling you and not even testing your progesterone. He/She deserves a throat punch. I agree with previous comments - I would see if your PCP would check your progesterone. Or if there are other RE'S in the office you go to?

Thinking of you and hoping everything works out.

[ttcbabyj]

I am so upset for you right now. These REs act like there is some kind of parent child relationship going on. I think she needs to remember who is paying her salary. It seems like some doctors hate that their patients are knowledgable and advocating for themselves. Is this the same RE that thought you were insane for wanting run the repeated loss panel? She's got issues!!
I agree with @wineandcupcakes could you ask your PCP to run the test. When my old PCP refused to run some simple tests, first I found a new PCP but in the mean time I went to one of those labs where customers order their own tests. I think I went to A.cce.ss.a lab. I ordered and paid for the test online (mine was estradiol it was like $60) and then I went to one of their local labs and got my blood drawn. It was pretty easy. And then after I went I sent my results to my old PCP. :/ Btw I was right about my estrogen being very high!

[Evelyn3]

I'm so frustrated for you!
I hate when they won't even bother to have a simple conversation about things. It's their way or the highway is a ridiculous attitude for them to have.

I would have said to agree to take it and then just not do it. It's crap that it's a day late so they don't give a crap.... Can't believe she won't even talk to you.

They act like they are so high and mighty sometimes.

I would probably go to a walk in clinic and ask if I could get a referral for some tests and then just go get them done at a lab myself.

Not sure what else you could do to convince them to allow you to transfer.... Except the argument that you are paying for it. Or get it tested by someone else and bring results back to prove they are sufficient? If they come back that way.

Or I would see if embryo could be moved to another clinic, but I guess it would be a rush to do it in time.

So sorry you are dealing with this.

I don't see what is so hard about her just testing the god damn thing.

[mikaela20]

I'm am so frustrated just reading this. I'm almost speakless that your RE would do this without so much as a discussion with you about it.

I don't have an other advice that hasn't been suggested by PP'S.

I'm so sorry you are dealing with this.

[weeklyplanner]

Honestly, I wouldn't give her another penny. She will likely charge you for that meeting in a few weeks, after blowing you off now and cancelling a cycle so abruptly. I'd continue to be angry and sad, but immediately start making appointments for second and third opinions. I always feel better when I have a back up plan. If she doesn't have the decency to speak with you, how can you trust she's doing best thing for your precious last remaining embryo? I'm so sorry! This is just not right!

[deelopi9]

I'm beyond upset for you! I would show up and demand to speak with her or the Medical Director for the office. You should be able to advocate for yourself, your embryo and come to a compromise with treatment. So unprofessional!

[tiresiastheblond]

Thanks, all. Your support makes me feel so much better!

DH and I talked about it last night and came to pretty much the same conclusion as weeklyplanner. This is too important to have it done by someone who doesn't want to be doing it--just too much bad juju. (I should point out that DH took a virulent dislike to this RE the first time he met her, so this is not a surprising opinion. But I do agree.)

I've already sent an e-mail to the RE I saw for immunological testing, and if they're not willing to take the blood sugar stuff seriously and be flexible with protocol, I'll look for a third. I'm still really frustrated, but I guess it is what it is...

[tiresiastheblond]

Apr 6, 2016 0:30:33 GMT -5 ttcbabyj said:

I am so upset for you right now. These REs act like there is some kind of parent child relationship going on. I think she needs to remember who is paying her salary. It seems like some doctors hate that their patients are knowledgable and advocating for themselves. Is this the same RE that thought you were insane for wanting run the repeated loss panel? She's got issues!!
I agree with @wineandcupcakes could you ask your PCP to run the test. When my old PCP refused to run some simple tests, first I found a new PCP but in the mean time I went to one of those labs where customers order their own tests. I think I went to A.cce.ss.a lab. I ordered and paid for the test online (mine was estradiol it was like $60) and then I went to one of their local labs and got my blood drawn. It was pretty easy. And then after I went I sent my results to my old PCP. :/ Btw I was right about my estrogen being very high!

Yep, that's her.  She also had her PA tell me that progesterone had nothing to do with blood sugar (maybe), that high blood sugar has nothing to do with implantation failure or miscarriage (um, no), and that I shouldn't be testing it. She's also miffed that I started metformin (she refused to prescribe it and suggested I ask my PCP to do so and--I did?)  Her explanation for the loss was "bad luck" and she seems to be taking it as a personal affront that I wanted to investigate instead of saying "sounds right to me--let's throw the other one in!"  Yes.  Issues.

[tiresiastheblond]

Oh, I should add that the clinic is her own stand-alone practice. There's nobody to complain to, or I would. I'm going to follow @wineandcupcakes advice and have my P4 tested, though--for my own knowledge if nothing else.

[emilie]

I'm so sorry you're dealing with this. I can't believe that RE was so immature that she would not discuss cancelling with you herself. I know your embryo is there with that RE, but I'm with the others who say I would probably move on if I were you. Are there any other REs in that practice that you could consider? When you're having to advocate for yourself so much and feel like you're not being heard, it's probably time to move on to someone who you feel will at least listen to you.

I'm so sorry your plans for this month have been upended. Huge hugs.

[tiresiastheblond]

Apr 6, 2016 14:15:40 GMT -5 emilie said:

I'm so sorry you're dealing with this. I can't believe that RE was so immature that she would not discuss cancelling with you herself. I know your embryo is there with that RE, but I'm with the others who say I would probably move on if I were you. Are there any other REs in that practice that you could consider? When you're having to advocate for yourself so much and feel like you're not being heard, it's probably time to move on to someone who you feel will at least listen to you.

I'm so sorry your plans for this month have been upended. Huge hugs.

In fairness, she did call today, but I let it go to voicemail. She just reiterated that she was canceling because having FET patients take PIO was "something she felt strongly about" and added some stuff about how she looked forward to discussing my care with me soon and hoped I would schedule an appointment.

[doves654]

Ugh, how frustrating! I'm with many others and would move my embryo. Feeling good about your RE and protocol is so important.

[4furrypaws]

I would be on every Dr review site writing reviews at the very least. Could you contact a medical board of some sort? IDK, I just want to cunt punch this bitch so hard for how she and her office have handled this.

I'm glad you and H have decided to try and get in with the other RE.

[tiresiastheblond]

Apr 7, 2016 20:45:55 GMT -5 4furrypaws said:

I would be on every Dr review site writing reviews at the very least. Could you contact a medical board of some sort? IDK, I just want to cunt punch this bitch so hard for how she and her office have handled this.

I'm glad you and H have decided to try and get in with the other RE.

The thought did cross my mind (the review, not the cunt punch).