Thyroid: continued

It has been a long and mentally exhausting week.

Ever since I got my TSH results back, I've been researching and discussing. I sent emails back and forth to my endocrinologist. I asked to speak to her over the phone but she prefers email or face to face, so I scheduled an appointment at her first available which is next Thursday. I asked to be on the cancellation list as well if anything sooner opens up. I also looped in my RE. His response was that it's not an issue. That didn't sit right with me. Why. Why is it not an issue. I sent him links to the articles keeping me up at night and asked him to call me. What was I expecting him to say? I don't know. I think he knows me enough to know he couldn't convince me with anything he said, so he sent me a study to read. I went over it with a fine tooth comb absorbing all the statistics and information it had to offer.

As I understand the study it basically says there's not enough evidence to really say one way or another about the 2.5 - 4.0 range. There is fair evidence that SCH, defined as a TSH level >4 mIU/L during pregnancy, is associated with miscarriage, but insufficient evidence that TSH levels between 2.5 and 4 mIU/L are associated with miscarriage. So if several studies have found that elevated TSH levels in pregnancy are associated with an increased risk of miscarriage in patients without a diagnosis of hypothyroidism (>4), and studies show improved pregnancy rates in cases of what's considered the ideal range (<2.5) then, all else being equal, wouldn't it provide a better chance at success if my TSH was closer to the 2.5 level instead of the current 3.54? I understand TSH numbers can vary greatly and it's an inexact science but I've been getting these 3ish readings consistently since the summer and even after starting medication (albeit very low starter dosage) it's still stubbornly at that range.

The other thing that caught my attention was that the studies in the article were done later in gestation and there's limited information about early miscarriages, or even TSH rates and implantation. My chemical pregnancies didn't make it past six weeks gestation and while it's impossible to know why, I can't help but wonder if TSH was a factor. If the Endocrine Society recommends 2.5 as the upper limit of normal in the first trimester, and it's known that TSH tends to go up during pregnancy, I'm not understanding why a level at 3.54 is not an issue.

When I asked if 3.54 is as good as having a number in an ideal range or if there's a benefit to waiting to get my TSH number closer to "ideal" of under 2.5, this was his response:  "We in the practice have gone both ways in the past. I cannot argue with your goal. Different societies can read things differently."  Basically, he has no answer but also has no objection to trying to bring TSH lower to under 2.5. He doesn't believe that it will make a difference, but if it makes me feel better he's not opposed. There's certainly no harm to it.

So RE says it's not a problem. Endocrinologist says it's not a problem. My mind is stuck wanting to give the transfer the best chance but I'm willing to accept that it's my own hangup and can be convinced to move past it.

Enter new factor for consideration: I forgot about the endo scratch. The hysteroscopy was done on 1/26 and counts as having similar benefits of an endo scratch as long as a transfer is done within 60 days of the procedure. If I wait to lower my TSH to "ideal" then I lose the benefits, if any, of whatever the endo scratch did. There's no way I'm interested in doing a hysteroscopy voluntarily again, so if we want the benefits of it then transfer can't be delayed.

I reached out to the doctor we saw in the summer for our second opinion back in the summer. I really liked her and thought she had some good ideas. I decided to see if she has time to chat with me and get her take on it. If she also says that it's not an issue then I can comfortably proceed with peace of mind. She heard me out, got all the dates and numbers and basically said that if my thyroid anti-bodies are normal (negative) then she would recommend to proceed. In her opinion, getting the benefits of the hysteroscopy endo scratch were better than trying to get the TSH down to ideal, especially considering I'm already on meds and have already increased the dosage.

So there we have it. It's one thing to get the opinion of a doctor and disagree with it, but here there are three. Three medical professionals, trained endocrinologists, are all saying it's a go. I can't argue with that. Whatever will be will be, and hopefully this is the time it's supposed to stick.

I feel completely drained from all the anxiety and worry and questioning everything about this issue. But at the same time I feel satisfied that I left no rock unturned and no question unanswered. At the end of the day, my husband and I need to live with this decision and I needed to make sure I'm at peace with what we chose.

Shabbat Shalom!

Ides of March

When I checked the calendar and saw that baseline is next week I kind of groaned to myself. Feels like we just finished the last of the IVF cycle recovery/period/mikvah and barely had a breather. We were also obsessing over whether or not to do an endo scratch and that took up a lot of mental capacity.

We know that any decision we make, if it leads to a failed transfer, we will wish we had chosen the other option. We can't keep thinking like that. We can't obsess about things beyond our control. We're trying so hard to predict a future no one can see. Nearly everyone we polled -- we were really struggling with this decision and asked for a lot of opinions -- said not to do it. If I was able to get pregnant twice then implantation isn't my issue. More importantly, we don't know what an endo scratch will do to the lining relative to the ERA results. I don't want to miss the transfer window, since we were led to believe that it's such a narrow time frame.

A crazy option is to do some more ERA tests. Repeat the test with an endo scratch on day 5. Repeat the test with an endo scratch on day 6. Is it insane? Sure. But at least we wouldn't be wasting embryos. We'd be wasting more time and money. In my mind it's better to waste $2k on more ERAs than $20k on another IVF for more embryos. But who knows what that would do to my lining long term. And ouch. We're definitely not doing that.

I had my annual gyn appointment last week and asked for her opinion since I was there already. Her first answer was to stop overthinking it. It isn't a silver bullet and there's no way to know whether or not it helps. She also said that some women aren't meant to get pregnant (she's practical and blunt like that, which is part of the reason why I love her) but that doesn't mean that may be me. She said if we weren't screening for a devastating disease and had tried naturally I probably would have several kids by now. In her opinion, she said she'd throw everything at it; in other words, pro. Her opinion carried more weight so her saying to do it kind of made me continue thinking about it even after we thought we had a decision.

I feel like the endo scratch is the last straw for people who don't know what else to try. It may or may not be so but that's my perception. There was also no information online or through my doctor's office for people who have done both the ERA and the endo scratch. I couldn't find anyone who had any experience with both, let alone a positive pregnancy after doing both.

Ultimately, based on the information we have and the logic we pieced together, we decided to skip the endo scratch this time. It's important for me to write this out so that I can go back to read it in case our transfer fails. I may blame myself if it fails again, but at least I'll know we really put the time and effort into making a thoughtful, intentional choice based on all the information we had at the time.

Beside for all that, I don't think my clinic does this procedure very often. They scheduled to take two biopsies because legally they have to send one to the lab for pathology testing. So I need to go through two uncomfortable biopsies within a week because of legal reasons? That's BS. Maybe that's just the procedure and it really is a double-scratch with a week healing in between but it sounds off to me. It's not only the pain and discomfort of the actual biopsy, it's also the emotional rollercoaster. So before committing to another procedure I'd need to understand more of what it entails. And if my clinic isn't fully equipped to handle it I'm not prepared to do it just because.

We have a week to breathe before we start baseline and shots again. The snow day was a great break from general routine. My husband worked from home but I was officially off. I did a few hours of work but overall chilled. I had Harry Potter on in the background while I was working so that was fun. I also caught up on Big Bang Theory and Last Man on Earth.

I met with a friend earlier this week. We reconnected recently, after I saw her in the hospital when I went to visit someone else. She was about to be induced with her first baby after a long struggle with infertility. She had multiple unexplained losses.  Her issue was staying pregnant. It was nice chatting with someone who gets it. Someone who is also Type A personality who needs to know and has to fix and wants to change. Someone who feels like they can if they just find the problem and address it. Her baby is less than 3 months old and she's already thinking about #2. She had a classic, uncomplicated pregnancy and yet she didn't believe they were taking home a baby until they strapped her in the carseat on the day they got released.

I had plans to drop some weight before this next transfer. But it's coming up so fast I barely had enough time to get rid of the IVF bloat I was carrying around from February. I have a physical next week and I'm getting routine bloodwork. I don't know if my reg doc can recommend anything but willing to ask. For a hot second I thought of maybe postponing the transfer so we can get a little bit of a longer break. We both quickly shot that idea down - neither of us like that. A break may be nice but we don't want to push off a transfer.

I'm worried about the next transfer in a hazy sort of way. It's constantly in the back of my mind yet I'm in denial it's around the corner. It's mixed in with Pesach preps so I have an easy distraction when the thought of it gets overwhelming. Part of me just assumes it will be another bust but I can't wrap my mind around another loss. I still haven't been back to Wegman's since the last loss. The idea of another 2WW overwhelms me and I quickly change thought patterns to something else. I want to be excited for it but I'm having a hard time imagining a different outcome than the utter disappointment we've experienced in the past. Four times we've had our hopes raised and four times they were crushed. It's more than just the physical toll it takes; there's an enormous emotional toll every time. We have to make a purposeful and mindful effort to keep our sanity and marriage together through each loss.

At this point it's taking too much effort to psych myself up so I'm not forcing it. I'm going to give myself a break from thinking about it until baseline. I'll have enough time to think about it later. Right now, I'm going to try to enjoy whatever is left of our "break."

Happy Birthday!

A very happy my birthday to you!  Hope you're having a great day. So far so good for me.

I went out to lunch with my team at work. It was lovely. A great way to spend lunch break if I have to be at work anyway.

My husband is currently baking a cake (!) and making pizza for dinner. I'm super excited. He's not a kitchen person and I love that he's stretching beyond his comfort zone for me.

I think the cry yesterday helped me so much. I was able to start today with a fresh outlook. It helped make it a cheerful day and I'm back to being hopeful.

I sent my doctor an email asking him to call me. I included my phone number and said it's not urgent - it's really not. I'd be fine with it if he calls me within the week. I've noticed I'm not so impatient anymore. Maybe because I know the transfer is already scheduled and it's still a while away so there's no rush. In any case, I asked about the endo scratch and he couldn't give me a recommendation one way or the other. He said it's up to us and what we decide. He still doesn't believe the value in it but that they offer it as an option because of mixed reviews.

There's also the added factor of the ERA. The results from the ERA said my lining is most receptive after 6 days of PIO. But the biopsy for the ERA happened without an endo scratch. Which means that introducing an endo scratch may invalidate the ERA results. On one hand, I'm not objecting to the biopsy itself. However, I don't want to transfer too late based on the ERA results if my lining has already been "woken up" by the endo scratch and miss my window. I'm torn. My husband says it's up to me, since it's my uterus getting scraped.

It feels like it's a gamble. Regardless of what we decide if it doesn't work we'll regret not going with the other option. If whatever we decide this time doesn't work we'll do the other option next time. We're adding the prednisone/lovenox meds into the mix this time no matter what we decide with the endo scratch.

So: endo scratch or not?  I'd love to hear your thoughts.

Rough day

Today was a hard day. I worked late and got home around 9:00 PM. My stomach was bothering me and I was in and out of the bathroom all day. I ate just a plain yogurt (probably a bad idea in hindsight), banana, and apple all day. I wasn't hungry because I was busy and occupied.

I got the official timeline from my nurse. There were some notations on the bottom that I thought were just leftovers from the template she used for the last patient or something. I asked about them and she's like, "Oh, those are your biopsies." Wait, what? I had no idea what she's talking about. I asked about it and she said, "With the implantation failure we do perform 2 endometrial biopsies...The biopsy is meant to "wake up" the lining." Yeah, I'm familiar with the terminology what I don't get is why it's in my timeline and why is this the first time I'm seeing it? Did I miss something?? I was very confused. It took me completely by surprise. I remember discussing it at our WTF appointment in the summer after failed FET 3, but it was never decided that we'd do it. In fact, the doc wasn't even convinced that this would help and was just mentioning it as an option. He was  adamant about changing only one thing at a time though. So we went with the ERA option because it would give "concrete" information. We changed protocol for FET 4 based on the ERA results. When that failed, we added the extra meds prednisone/lovenox for FET 5. I'm still unsure where it was decided to add the endo scratch anywhere. My husband doesn't remember it being discussed after the July appointment either. I'm paying too much money for them to treat me like some statistic and randomly add crap to my timeline without asking or even telling me about it.

In addition, we got back PGD results for our embryos. One. It's hard to be upset at a beautiful healthy embryo. And yet I can't stop crying. I'm so, so grateful it wasn't a busted cycle with zero. But one? Just one? All that money and blood, sweat, and tears for one? We went through all that for one? I'm feeling guilty for being upset about the one. I know some people would love to get a healthy embryo from their own eggs/sperm. I know people go through multiple cycles just to get one healthy embryo PGD-tested and ready for transfer. Even so, knowing what I know about our transfer history I'm upset that this cycle resulted in only one shot.

And then since I was crying already, I couldn't stop. I cried for the failed transfers. I cried for the nights of anxiety. I cried for the years we've been childless. I cried for the unknown. I cried because my birthday is tomorrow and not only am I getting older, but the pressure of "what are you doing for your birthday?" has become overwhelming -- the answer is nothing. It's a regular day that happens to be the anniversary of when I was born. I should be calling my mom to say thanks and call it a day. The one thing I wanted to do was travel and we can't do that. I cried that we can't go on a trip. I cried that we don't have money for renovations. I cried because my husband didn't realize I hadn't eaten yet and ate all the good parts from the crockpot meal I put up in the morning since I knew I'd be working late. I cried because the tissues were rough. I cried because the president is a lunatic. I cried because I don't like feeling sorry for myself; I'd rather be a badass. I cried because I want to share good news with my parents so badly. I cried because I'm relieved we got a good embryo from the cycle. I cried because we only got one embryo from this cycle. I cried because I'm scared for the transfer. I cried because I'm worried for the future.

As I was crying I was surfing online and came across a line: "A winner is just a loser who tried one more time." We are not on an easy path. Hope guides us as we stumble along, trying yet one more time.

Follow up appointment

We left the appointment today feeling good about next steps. What our RE lacks in phone/email skills he makes up for in person. We talked for almost an hour this morning and at no point did I feel like he was distracted or impatient. He answered all of our questions and then some. Even though we didn't walk away with a lot of new information, we have a clearer picture of our options moving forward. The discussion included:

• Natural vs. medicated FET 
• Endometrial Receptivity Assay (ERA) 
• Endo Scratch 
• Thyroid, prolactin, Vit D levels, etc. 
• Hysteroscopy 
• Transferring more than one embryo 
• Immunologic implantation dysfunction (IviG) 
• Additional embryo testing beside PGD 
• RPL workup 
• Getting a second opinion 
• His phone skills 

In a natural FET there are a lot less hormones but a lot more office visits because you have to be very closely monitored. The risk is that they do not do transfers on Saturdays or Sundays so if you happen to ovulate at a time when transfer would be one of those days then the transfer gets canceled. They don't do enough natural FETs to justify staffing everyone over the weekend and so there would be no one there to transfer.

The ERA biopsy protocol is similar to the FET. Birth control for a few weeks, followed by shots as a "pretend transfer." They mimic everything you do at a regular transfer then instead of transferring an embryo, they take a biopsy of your uterus and send it off for testing. They're testing to find out if the transfer window they use for you is in fact correct. If it is, test comes back normal and you can transfer next cycle. If not, repeat everything again for another cycle except delay biopsy for a day. The idea is to narrow down the most receptive time for your uterus to accept a transfer. I asked what happens if after the second time it doesn't come back normal? He said he would have to take it to the panel of doctors at the clinic since it hasn't happened yet. So at the very worst we'd be delaying by two/three cycles while we do this testing. It is also expensive and not covered by insurance ($850 each biopsy).

Endo scratch is where they irritate the lining of the uterus a week before transfer. The idea behind this is that the uterus starts to heal itself and makes it more receptive to an embryo. There isn't sufficient medical data backing this up. He offers it if we want to try it but says he's skeptical that it actually works. Even if a transfer works he says he can't necessarily attribute it to this. There are no known downsides to this - it doesn't delay a transfer and insurance covers it.

We reviewed all of my hormone levels and all are measuring normal with no changes from 6 months ago, when they were also checked.

I asked about his opinion on getting a hysteroscopy (sticking a camera into the uterus to take pictures) and his response was that the benefit was so small and the risk was so high that he doesn't recommend it. I have no symptoms to indicate that there's any issue; usually they recommend this for someone with unexplained bleeding. It's not worth doing this minor surgery where the risk of perforating the uterus or finding something that not actually an issue is much higher than the tiny chance of finding anything the HSG or transvaginal ultrasounds have been missing.

He says there is too much risk to advise transferring more than one embryo. There is a higher risk for premature birth, pregnancy complications, and possible stillbirth. The only pro is that it's better financially because you're saving one FET by putting two in there. He said that the embryo quality is high for both embryos and whether or not anything sticks has to do more with uterine receptivity than the number of embryos.

We briefly discussed IID with IviG therapy but it's so beyond anything I could need at this point that it was pretty much irrelevant. This is something that's offered to women who have gone through dozens of procedures with multiple losses.

There is no additional testing offered beside for PGD. If there is any chromosomal abnormality with the ones we're transferring (or with me or my husband), there has not yet been a test created to check it. We're literally doing everything we can to ensure healthy embryos.

As a way to make me feel like we're not leaving any stone unturned, he offered to do a RPL workup which is a blood test offered to women who have had recurrent pregnancy loss. This is generally only offered to people who have had multiple miscarriages before the 10 week mark and tests to find out if there are clotting issues which might interfere with the placenta growth. It's easily treated with baby asprin and lovonox but they need to know it's an issue in order to treat it. This isn't something he necessarily recommends to someone who has had "only" three failed FETs, but I appreciate that he brought it up and if it's just a simple blood test I'm happy to rule anything else out. Why wait for more losses if this is just a blood test and so easily treatable? Did that this afternoon and results should come in about a week.

He brought up getting a second opinion saying that if we want to see someone else that he doesn't hold anything against us or get offended. I'm not interested in starting over with someone new at this point, but I think it's good to hear he wouldn't take it personally if we did. I don't know that there's anyone better and at this point I think it's too soon to shop around.

He apologized for last week's hectic schedule which didn't allow him to speak longer. I told him that I completely understand I'm not his only patient but that when he does talk to me I'd prefer if he was in front of a chart instead of trying to wing it from memory. I wasn't trying to make him feel bad or get an apology - I honestly just want to be able to get accurate information when we talk. I feel better now that I brought it up. I think it was important to me to not let it go unmentioned because it was a big deal and I don't want a repeat.

Overall we're feeling good about next steps. My husband and I are on the same page about wanting to do the ERA test. We're not totally in agreement about the endo scratch. Even though the endo scratch sounds like something I would try, I think it's pointless if we don't narrow down the transfer window first. He thinks it's a waste of time regardless. If we do the test and it comes back normal, at least we'll know we tried and will have no regrets moving forward with another transfer regardless of the outcome. If it comes back not normal then we'll get a possible answer as to why things weren't sticking. Either way it sounds like it's worth the pain, expense, and delay of another transfer. We can't do both: it's either the ERA or the endo scratch. Once you do the ERA you're mimicking the transfer so you can't throw in a monkey wrench into the system by introducing something new at the actual transfer. Since the endo scratch is unproven and we don't get an any answers from trying it, we're going to try the ERA and see where it takes us. 

This means that we're not transferring anything in July, possibly not in August either. So if I have the time anyway, I'm going to make an effort to use the time wisely working out and losing weight. Even 5 or 10 lbs off will help me justify the delay for the next transfer. I know I don't need justification, but for an impatient person such as myself, it helps keep my mind focused by having a tangible goal within my control. Exercising helps me feel good and eating healthy can only help. I'm going to set a goal for 10 lbs and reevaluate if I reach it before it's time to transfer (that should be my biggest problem!).