Our Preliminary Reproductive Immunology Findings
Yesterday I mentioned that last week we met with Dr. Braverman for our initial consultation. This included a review of our history, a sonogram and colour flow doppler study and having our blood drawn for the immunological blood tests to be completed – 15 vials for me, 3 vials for my husband. So, today I’m giving the details of our preliminary findings.
First up, our impressions of Dr. B:
- Our appointment times were rather frustrating, and given we traveled so far, I wish things could have been better planned. Our blood testing was at 1pm. We then had an hour gap before our 2:30pm appointment with Dr. B. His office is in the middle of an automobile designed commercial center which is hard to get to for those relying on public transportation and taxis – so we had nothing to do to kill time. He was then almost 40 minute late for our actual appointment, so we missed the train back into NYC and got to wait for the next train at the station for an hour. This was by no means a big deal, but did resulted in an unnecessarily long day of waiting.
- He reinforced our suspicions that our current RE providing us with unacceptable care and advice. There are substantial gaps in the RPL workup we received when compared to standard testing in the USA. (Personally I’m not convinced the sub-par testing is a Canadian thing. I suspect it is more likely a direct result of an uninterested RE). And Dr. B also confirmed that there are substantial problems with the advice we are currently receiving. More on this below.
- We are confident that Dr. B and his team will uncover the complete list of reasons causing our losses.
- We generally liked Dr. B. His sense of humor fits with ours. The latent sarcasm on both my part and his when discussing our RE’s current plan was woven throughout our conversations and was entertaining (FYI, I am an incredibly sarcastic person with a dry/dark sense of humor). In addition, Dr. B is candid, honest, and gets straight to the point. As we have no patience left for game playing and guessing we really appreciate his approach.
Our loss history indicates a few things specifically related to reproductive immunological issues:
- A septic miscarriage is a significant indicator of immune issues according to multiple scientific studies.
- Given that our genetic testing and karyotyping is all healthy and 3 of our miscarriages have had confirmed fetal heart rates, the cause of our miscarriages are unlikely to be genetic issues. Research indicates that once a fetal heart rate is detected in more than one loss, it becomes virtually impossible that the cause of all our losses is the result of poor random alignment of chromosomes. Further, the likely cause is an immunological reaction occurring within my body.
My immunological history indicates a few things specifically related to reproductive immunological issues:
- I have a sever allergy to grass, which has been brought under control with 4 years of allergy shots (thanks to my amazing local immunologist).
- I had medically induced lupus 12 years ago, with absolutely no occurrence since the drug responsible was removed from my system (it took 9 months for my body to fully recover).
- Of course my local RE does not see either of these facts as important. Both of these factors strongly indicate that I likely have an immunological response occurring within my body when I’m pregnant.
- The immunological cause of hypothyroidism, which I have had under control since a random blood test discovered it in 2009), also causes endometriosis. I cannot remember the specific problem, but what is noteworthy is that they are caused by the exact same internal problem. So, while I have no symptoms of endometriosis, this definitely points towards non-symptomatic endometriosis.
The sonogram and colour flow doppler study indicated a few more things:
- Blood flow to my uterus is highly restricted. In fact, I have some of the lowest blood flow to my uterus that Dr. B has ever seen. This is bad, like really bad! I have never had a sonogram with a doppler measuring blood flow before – apparently this test is considered standard by most doctors working with RPL patients. Multiple scientific studies correlate this with intrauterine growth restriction (IUGR), which is a leading cause of fetal demise.
- My uterine lining shows problems. It is not forming correctly as it is improperly shaped and too thin for my cycle date. As my current RE has never tracked me through an entire cycle, so this is new information.
- The problems of blood flow and poor lining indicate sever non-symptomatic endometriosis. Given that my sonohysterogram come back showing my uterus to be completely fine, he suspects this is the result of sever non-symptomatic endometriosis and not scar tissue from my 2 D&C’s. There are about 50 documented cases of sever non-symptomatic endometriosis cases presenting in the same way that I am. That said, the only way to know is through surgery.
- This cycle, I am producing follicles at the rate of someone who is currently taking stimulation medications such as clomid or letzerol. In fact, I am producing 3 follicles this cycle – indicating that we could have ended up with triplets naturally!
We also spoke to Dr. B about a few of the recommendations we are receiving from our current RE:
- Our RE is suggesting clomid/letzerol (and possibly IVF eventually) to encourage the production of more eggs. Dr. B felt this was absurd and not even worth discussing at this point. Clearly we get pregnant easily, and evidently my body is able to produce multiple eggs all on its own. And, as we suspected, taking these medications or doing IVF will not help reduce our chances of miscarriage.
- Our RE’s current practice is to start prometrium once a pregnancy is confirmed. Once we begin trying again, Dr. B absolutely recommends that I take prometrium starting 4 days after I detect an LH surge. This must be done, but is likely not the only reason we have experienced so many losses.
- Acupuncture will not hurt our chances, but there is no proof that it will help.
- Chinese Traditional Medicine will not hurt our chances, but there is no proof that it will help. That said, he wants me to stay away from herbal supplements.
- Our RE does not believe in a link between miscarriage and gluten. Our immunologist has recommended reducing my intake significantly. Dr. B suggests remove gluten completely from my diet. 80% is not good enough – it needs to be 100%.
- Currently, as long as we are trying and/or pregnant I am banned from engaging in anything more strenuous then walking our dog. Dr. B believes this is crazy, and recommends that I can engage in non-high impact activities – I am allowed to run for 30 minutes a day, but I am not allowed to train for marathons. This means, I can officially start running and cycling again! (I’m disappointed that it is now October and snow will fall soon enough forcing me inside, but I will still take it).
Dr. B’s initial recommendations:
- I have to have a laproscopy and hysterocopy with a skilled surgeon before we can try again. This is a must given the significant problems within my uterus and the high likelihood of endometriosis. He suggests having the surgery now, rather than waiting for the blood results.
- IVIG will almost be guaranteed to be a requirement for us to achieve a successful pregnancy given the likelihood of immunological issues. That said, this cannot be confirmed until we receive the results of the blood tests.
Our Next Steps:
- We will not proceed with the surgery until we have the complete results. If we cannot afford the rest of the requirement treatment, then there would be no point on having surgery. Additionally, as Canadians with no USA medical insurance, we are almost certain we will not have the surgery in the US given the potential for complications from the surgery itself or the recovery. The costs of any unforeseen complications would have the potential to financial ruin us. We can and will look for a qualified surgeon in our Province, but it could take a few years to get a referral, and it is also unlikely that they will do a surgery for non-symptomatic endometriosis given that only 50 similar documented cases exist. Ultimately given all of this we rationally know that the chances of this surgery happening in our future is slim to none.
- If we cannot afford the full recommended treatment, it is unlikely we will proceed with another attempt. I have no desire to half ass it, just to have another miscarriage. I’m so done with having miscarriage after miscarriage after miscarriage. Right now, I cannot imagine jumping onto a partial protocol that will not have significantly better results then what we have already been doing. It’s one thing to risk another miscarriage knowing we are using the best possible medical protocol, it’s another thing to try with a half attempt. Note that at this point we have not discussed the financial constraints with Dr. B – we intentionally have left this out of the conversation as we want to know exactly what treatment he would design in a perfect world without any constraints.
- We will continue to actively not try until we know receive the full results and recommended protocol design.
- We will be looking more seriously at adoption again. We still have significant concerns, and very real fears. I am not sure that we will overcome these and choose adoption, but we need to be certain in our decision and more thought and investigation is warranted.
- I will be researching surrogacy options and costs. Now that we understand that our problems are with me and not a genetic flaw in our babies, surrogacy is suddenly a much more real possibility. Surrogacy in Canada is hard because it is illegal to pay a surrogate, so if we choose surrogacy we will likely turn to international surrogacy.
- Our full results and recommended protocol will take up to 6 weeks to receive. So, in that time we will not make any final decisions on anything, because we don’t have the complete picture. That said, I know my husband and I are both bracing for the worst as all the preliminary findings paint a rather bleak picture. We both understand that this could very well mean the end for our attempts to have a successful pregnancy.
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