Week of August 26th

[joenali]

I finally had my follow up with my RE. He recommended no further IVF cycles, which I kind thought would be so. My eggs are just not quality anymore. We talked about using an egg donor and also using a known egg donor. I haven’t even approached my sister about it, but she’s young, 22. But it’s even more expensive than using an unknown egg donor because you need to have legal representation, etc. So that’s off the table, because of so many things. And unknown egg donor may be off the table as well, because of cost.

For now we are taking a break. I’ll most likely be going on a few months of depot lupron to suppress my periods and give myself a break from the bleeding and pain.

I feel so sad that this might be it for us. My mom even brought up counseling and I think she’s right. There are days when I feel fine and days where I just feel like a dud and a defect.

I hope everyone has something happy to look forward to this week!

[achi]

I'm sorry you're in this place joenali . I am glad you're giving yourself a break from the hell you go through every time you have your period, I am sure it's an absolute nightmare.

I am waiting on my antiphospholipid antibody test results to come back. The lab has up to 15 days to come back with results. So I wait and google obsessively. Two of my CBC numbers that have always been right at the top end of normal are now over the range limits. After pouring over studies and journals I've figured out that this can be indicative of red blood cell size abnormalities and clotting issues. I'm really trying not to jump to conclusions (pretty unsuccessfully) but I am fully expecting the APS antibodies to come back positive. Never in my life have I actually WANTED to have a syndrome/disorder, but at least that would give us an explanation and a new path to pursue (lovenox or heparin injections along side the baby aspirin protocol).

I'm feeling better than I was last week, but just very impatient. If my antibodies are negative I'm sure that'll send me into another emotional tailspin. Good thing I start therapy next week.

Does anyone know if DNA karyotyping looks for MTHFR gene mutations?

[ilovecandy]

Hugs joenali

I have about another week and a half. Before day 1 of my cycle for ivf should start.

I also started Lexapro last week.

[megstoo]

Hugs joenali, it's not an easy decision to take a break.

I just did my last PIO shot last night. Since my clinic is NO help I decided to take matters into my own hands and try to force a cycle with PIO. It's worked in the past so I'm hoping it'll work again. My clinic keeps on insisting I need a lap which I had May 6th, there's NO way I need another one and my insurance won't cover another one. I've had attempt at FET#2 cancelled 3 times already so I don't feel optimistic at all that this transfer is going to stick or that I'll even make it to FET. I seem to have an issue with fluid buildup in the uterus and nothing is working to get rid of it.

[moonriver]

joenali I absolutely recommend therapy. I haven’t been in a while, but it was really helpful when I went.

[moonriver]

megstoo have you gotten a second opinion, or looked at any other clinics? I’m sorry this is so drawn out for you.

[moonriver]

Today has been nuts for me. I called my RE to let them know I’m on CD2 and to schedule my next appointment, which apparently had to be today since they want me to start gonal-f tomorrow. But my RE is out of the office this week so they did the bloodwork there, but had to send me elsewhere for the u/s. AND I had to call the specialty pharmacy to get all my meds here tomorrow. I had no idea I would have to start the gonal-f on cd3. We briefly thought about just skipping this month because it felt really rushed to get all of this done, but it’s my 2nd cycle after the HSG and I want to take advantage of that. Plus, I know my H will be in town the next 2 weeks. He travels for work and will likely be gone at the end of the month/or in October, so it would be harder to plan.

[seeyalater52]

Aug 26, 2019 11:30:57 GMT -5 achi said:

Does anyone know if DNA karyotyping looks for MTHFR gene mutations?

It doesn’t. It’s just a chromosome analysis.

[achi]

Aug 26, 2019 21:29:15 GMT -5 seeyalater52 said:

Aug 26, 2019 11:30:57 GMT -5 achi said:

Does anyone know if DNA karyotyping looks for MTHFR gene mutations?

It doesn’t. It’s just a chromosome analysis.

Thank you.

[megstoo]

Aug 26, 2019 14:16:52 GMT -5 moonriver said:

megstoo have you gotten a second opinion, or looked at any other clinics? I’m sorry this is so drawn out for you.

The problem is we are self pay, insurance won't cover a penny and the clinic's in my area start at 15k, this clinic is by far cheaper at 4k. I knew going into it I'd have to advocate for myself and was prepared for that but I wasn't prepared for the lack of communication.  I know the saying is true you get what you pay for.  I talked to my old RE's office where I monitor at and they didn't have any ideas either.  They don't know how to address the fluid either and their suggestion was a lap which I've already had.  

[msmerymac]

*hugs* joenali. I've seen a therapist for infertility and I highly recommend it. Mine also runs a professionally-led RESOLVE support group (as opposed to a peer-led RESOLVE support group, which are more common). I went to see her probably 7-8 times last year around the time of my second loss and I'm considering going back, although the free support group has also been really helpful (we meet once per month).

www.psychologytoday.com/us/therapists - you can search by location and specialty, including infertility
resolve.org/support/find-a-support-group/

[msmerymac]

I did my blood work for my recurrent loss panel last week, and I have an appt with my RE next month where we can talk about the results, plus the results of the analysis of the tissue from my last miscarriage. I feel like a total hippie when I say this, but I feel like I have some kind of nebulous, non-specific autoimmune thing going on. I know last time I did bloods my thyroid was borderline. But I've had sinus issues and migraines for pretty much as long as I can remember. I'm pretty sure a lot of it is triggered by food. When I did low-carb for my egg retrieval in February I told my nutritionist that I think I accidentally cut something ou that really helped my energy and my headaches. She thought it was maybe gluten, which I kind of agree with. And I KNOW I don't have celiac, and I've never really believed the whole "not-celiac-but-sensitive-to-gluten" thing, but I'm really starting to suspect that might play a role.

ANYWAY I'm thinking of starting an anti-inflammatory diet in the next few months. Right before the holidays. We're going to try to do another transfer in January.

[seeyalater52]

Aug 27, 2019 9:32:34 GMT -5 msmerymac said:

I did my blood work for my recurrent loss panel last week, and I have an appt with my RE next month where we can talk about the results, plus the results of the analysis of the tissue from my last miscarriage. I feel like a total hippie when I say this, but I feel like I have some kind of nebulous, non-specific autoimmune thing going on. I know last time I did bloods my thyroid was borderline. But I've had sinus issues and migraines for pretty much as long as I can remember. I'm pretty sure a lot of it is triggered by food. When I did low-carb for my egg retrieval in February I told my nutritionist that I think I accidentally cut something ou that really helped my energy and my headaches. She thought it was maybe gluten, which I kind of agree with. And I KNOW I don't have celiac, and I've never really believed the whole "not-celiac-but-sensitive-to-gluten" thing, but I'm really starting to suspect that might play a role.

ANYWAY I'm thinking of starting an anti-inflammatory diet in the next few months. Right before the holidays. We're going to try to do another transfer in January.

If you're a hippie I'm a hippie. Nothing shows up on my immune testing but I've had chronic, unexplained hives that aren't a specific allergic reaction since I was a teenager. They get worse during my medicated cycles. I am convinced that the prednisone and DIY immune protocol (Benadryl, Pepcid and Claritin) made a difference in my last transfer, especially since we now know that the embryo had a chromosomal issue that caused the miscarriage. I also did anti-inflammatory diet before my third transfer although it did nothing in that case to prevent the early loss. I am doing it again in the lead-up to this egg retrieval and will probably stay on it until I'm done with transfers, just in case. 

I hope your testing and results bring you some answers. <3 

[barney96]

joenali, have you asked if your RE has a program for leftover embryos? Our RE "sells" them for something like 7K.

[joenali]

Aug 27, 2019 15:28:39 GMT -5 barney96 said:

joenali, have you asked if your RE has a program for leftover embryos? Our RE "sells" them for something like 7K.

Didn’t even know this was an option! I’ll ask! Thank you!

[seeyalater52]

Aug 27, 2019 15:34:26 GMT -5 joenali said:

Aug 27, 2019 15:28:39 GMT -5 barney96 said:

joenali, have you asked if your RE has a program for leftover embryos? Our RE "sells" them for something like 7K.

Didn’t even know this was an option! I’ll ask! Thank you!

If your current clinic doesn’t another clinic in the area might have an embryo donation program. It is definitely worth asking about.

[runnergirl]

Aug 27, 2019 12:23:23 GMT -5 seeyalater52 said:

Aug 27, 2019 9:32:34 GMT -5 msmerymac said:

I did my blood work for my recurrent loss panel last week, and I have an appt with my RE next month where we can talk about the results, plus the results of the analysis of the tissue from my last miscarriage. I feel like a total hippie when I say this, but I feel like I have some kind of nebulous, non-specific autoimmune thing going on. I know last time I did bloods my thyroid was borderline. But I've had sinus issues and migraines for pretty much as long as I can remember. I'm pretty sure a lot of it is triggered by food. When I did low-carb for my egg retrieval in February I told my nutritionist that I think I accidentally cut something ou that really helped my energy and my headaches. She thought it was maybe gluten, which I kind of agree with. And I KNOW I don't have celiac, and I've never really believed the whole "not-celiac-but-sensitive-to-gluten" thing, but I'm really starting to suspect that might play a role.

ANYWAY I'm thinking of starting an anti-inflammatory diet in the next few months. Right before the holidays. We're going to try to do another transfer in January.

If you're a hippie I'm a hippie. Nothing shows up on my immune testing but I've had chronic, unexplained hives that aren't a specific allergic reaction since I was a teenager. They get worse during my medicated cycles. I am convinced that the prednisone and DIY immune protocol (Benadryl, Pepcid and Claritin) made a difference in my last transfer, especially since we now know that the embryo had a chromosomal issue that caused the miscarriage. I also did anti-inflammatory diet before my third transfer although it did nothing in that case to prevent the early loss. I am doing it again in the lead-up to this egg retrieval and will probably stay on it until I'm done with transfers, just in case. 

I hope your testing and results bring you some answers. <3 

There are many unidentified autoimmune disorders beyond the common, labeled ones.  Have you considered meeting with a rheumatologist?  They would be able to provide a good perspective regarding the autoimmune aspect, separate from an RE and TTC standpoint.

[seeyalater52]

Aug 29, 2019 11:31:21 GMT -5 runnergirl said:

Aug 27, 2019 12:23:23 GMT -5 seeyalater52 said:

If you're a hippie I'm a hippie. Nothing shows up on my immune testing but I've had chronic, unexplained hives that aren't a specific allergic reaction since I was a teenager. They get worse during my medicated cycles. I am convinced that the prednisone and DIY immune protocol (Benadryl, Pepcid and Claritin) made a difference in my last transfer, especially since we now know that the embryo had a chromosomal issue that caused the miscarriage. I also did anti-inflammatory diet before my third transfer although it did nothing in that case to prevent the early loss. I am doing it again in the lead-up to this egg retrieval and will probably stay on it until I'm done with transfers, just in case. 

I hope your testing and results bring you some answers. <3 

There are many unidentified autoimmune disorders beyond the common, labeled ones.  Have you considered meeting with a rheumatologist?  They would be able to provide a good perspective regarding the autoimmune aspect, separate from an RE and TTC standpoint.

I’ve seen two rheumatologists, once several years ago after determining that my reactions aren’t allergy-related, and once more recently after the RPL was identified. They were both utterly disinterested in my case and although I went in for different reasons both times they basically said they think my symptoms are livable and they ordered some testing but nothing very comprehensive and nothing came back so they declined to treat. I was pretty pissed the second time that they basically shrugged at recurrent miscarriage but they were pretty clear that that is out of their wheelhouse since the only reason any treatment would be necessary would be as a component of infertility treatment which is another doctor’s job.

[runnergirl]

Aug 29, 2019 18:55:29 GMT -5 seeyalater52 said:

Aug 29, 2019 11:31:21 GMT -5 runnergirl said:

There are many unidentified autoimmune disorders beyond the common, labeled ones.  Have you considered meeting with a rheumatologist?  They would be able to provide a good perspective regarding the autoimmune aspect, separate from an RE and TTC standpoint.

I’ve seen two rheumatologists, once several years ago after determining that my reactions aren’t allergy-related, and once more recently after the RPL was identified. They were both utterly disinterested in my case and although I went in for different reasons both times they basically said they think my symptoms are livable and they ordered some testing but nothing very comprehensive and nothing came back so they declined to treat. I was pretty pissed the second time that they basically shrugged at recurrent miscarriage but they were pretty clear that that is out of their wheelhouse since the only reason any treatment would be necessary would be as a component of infertility treatment which is another doctor’s job.

That really stinks, I’m sorry.  Based on personal experience I would have thought they would be more helpful.

[joenali]

Aug 27, 2019 15:34:26 GMT -5 joenali said:

Aug 27, 2019 15:28:39 GMT -5 barney96 said:

joenali, have you asked if your RE has a program for leftover embryos? Our RE "sells" them for something like 7K.

Didn’t even know this was an option! I’ll ask! Thank you!

So my clinic does offer this option! I haven’t asked about price or anything yet. 6 months ago I would have been opposed to something like this. But after two failed IVF cycles and not being able to do another, this could be very much an option for us.