Immune Testing Results & Consult With Dr. Braverman

You guys, have I told you lately that I love you? For real. Your comments on my last post were just beyond. Not to mention my friends in real life that reached out to me as well. Thank you everyone. A million times over.

Last Tuesday I had my Skype consult with Dr. Braverman and found out the results of my immune testing. Basically, all the findings were consistent with endometriosis. This is pretty good news overall – there’s nothing else more sinister lurking on the sidelines.

Warning: I’m about to get very long-winded and detailed. I want to share as much as possible in case I can help anyone on the interwebs searching for information.

What the testing found:

I am genetically predisposed to endometriosis (duh at this point), Grave’s disease, Hashimoto’s thyroiditis, Antiphospholipid Syndrome (this one is no surprise either), Celiac, psoriasis and psoriatic arthritis

This does not mean I have any of these things–it just means I have the genes that would allow them to develop. Or something. I’m disclaimering right now that I barely understand all of this immune biz, so most of the explanations in this post will likely be at least semi-bogus.

Other things that are awry in my immune system:

My white blood cell counts are a little low. This is consistent with endometriosis, but I forget why.

My anti-cardiolipins are still testing as highly positive.

My natural killer cells and CD8+ T-cell levels are through the roof. Both are in the 98th percentile. Meaning, of all of Dr. Braverman’s patients, 2% of them have higher natural killer cells and CD8+T-cells than me. Whoa.

So why is this significant? Basically, both of these types of cells are totally normal. Everyone has them in their bodies. They fight off cancer, viruses and the like. But if they are too active, they see an embryo as a foreign body and kick it out.

To sum it up: I have endometriosis. This negatively impacts egg quality for a variety of reasons, two of the main ones being that it creates inflammation in the reproductive organs and also messes up the mitochondria in my eggs. This makes it really hard to produce eggs that actually turn into babies. Then, on the off chance that I do make a healthy embryo, the anticardiolipins, natural killer cells and CD8+T-cells kill it. On many levels, my reproductive system is – no, was – screwed! Was. It’s a whole new world now.

What Dr. Braverman suggests:

Luckily, everything that he found is straightforward to treat! Huzzah.

The first step is to remove the endometriosis, which I have already done.

Next, we wait two cycles in order for the inflammation to die down. I’m a little less than halfway through this.

Then he recommends another IVF cycle. As some of you know, I have an embryo still frozen at my old clinic. He said it’s not impossible, but very unlikely given what we know, that this embryo is genetically normal. So he recommended holding off on transferring that one for now.

After the IVF cycle we’ll freeze all embryos, ideally on day five. Apparently, the drugs from the IVF will make my immune response worse, so no fresh transfers for me. He then wants to do something called mitochondrial testing on the embryos. This is apparently a brand-new test. Instead of genetically screening the embryos, it tests only the mitochondria, which is apparently the most important factor for endometriosis patients. I’m not sure if we’ll do this yet. I need to look into it. He does not recommend traditional genetic screening.

Finally, we’ll do a frozen transfer, using Dr. Braverman’s immune protocol.

The immune protocol will include:

Lovenox (a blood thinner)

Steroids (reduces inflammation)

Intralipid IV infusions (this is, like, straight-up fat, I think. I don’t even remember what it does, but it sounds like some mad scientist hootenanny. Sign me up!)

All of this will be done at our new clinic, with Dr. Braverman consulting on the frozen transfer. The new clinic is about an hour away from us, which is a major downer, but our old clinic won’t work with outside doctors, and this one does.

Other recommendations from Braverman for patients with endometriosis:

Cut out gluten (I’ve been gluten free for a year or two now, so we’re good there.)

Cut out dairy (I’ve also been dairy free for a while. Dr. B. says a little dairy every so often is fine. It’s not as much of an issue as gluten.)

Eat organic

Take a crapload of supplements.

Here’s the supplement list, if you’re interested:

Pycnogenol and Resveratrol (antioxidants that reduce oxidative stress and lower reactive oxygen species in the follicle, improving egg quality)

Melatonin (an antioxidant — it has been shown in the literature to increase the number of FSH receptors on the follicles in patients with endometriosis. I may not be able to stick with this one, btw, as it appears to be exacerbating my asthma)

VSL#3 probiotics (to lower the level of inflammation by increasing the production of IL10 in the blood. If anyone knows what IL10 is, let me know.)

Fish oil with Omega 3 (didn’t get an explanation for this)

Mitochondrial optimizer (helps to improve mitochondrial function in the egg, which increases the competence of the nucleus. This leads to higher euploid rates and better embryo performance)

Vitamin D3 (to help decrease natural killer cell activity)

Greens formula (didn’t get an explanation for this)

General notes:

He said that, after surgery, I have about a one-year window until the endometriosis comes back.

His official word is that one cup of coffee a day and drinking socially is fine. He’s firmly in the everything-in-moderation camp. So, guess what guys? If I want a friggen glass of wine, I’m having a friggen glass of wine. No more guilt!

He called me young! Well, kinda. When I asked him if I should be taking DHEA, he was all, “That only works for older women, not women who have diminished ovarian reserve for other reasons.” Consider my life made. It’s not often that 38 is classified as a younger woman in the fertility world. I’m taking that and running with it.

Whew! Are you still awake? I am, but only barely. If you’ve read this far, you are a rock star.

And with that, I’m signing off. Must go to bed. Tomorrow we meet the doctor at our new clinic for the first time. I hope we like him (and the clinic) because we really don’t have much choice in the matter.

‘Night, dudes. Sleep tight.

Like, So Whatever

Oh hai.

I’ve started approximately 16 posts in the last two weeks, but I keep stalling out after a few paragraphs. So I figured I’d come on here and give a quick update.

After 7 weeks, my hCG is finally under 5. Woo.

I haven’t actually spoken to my doctor about the baby aspirin and Lovenox yet, but I did get a brief email from her saying that she’s on board with the hematologist’s recommendation. Despite the fact that I still have a million unanswered questions,  I’m relieved to know that she’s on team Blood Thinners.  I’m going to book an appointment with her after my hysteroscopy to go over everything.

Once my next cycle starts, I will finally get the aforementioned hysteroscopy. If all looks good there, I can proceed with IVF the cycle after that.

Ok, this post is so boring that I’m falling asleep writing it. My eyes are actually drooping for real. Yawn. Sorry, dudes.

I’m glad there’s a light at the end of the tunnel, but I’m really just feeling whatever about it all. I’m not doing so hot these days. I have good moments, even some great ones, but overall I just feel sad. I’m doing all the right things — therapy, yoga and I’ve even started attending an infertility support group — but I think no matter what you do or how hard you work, life is just going to have some rough patches.

And this is one of them.

Antiphospholipid Syndrome

How’s that for a sexy title?

First of all, thank you to everyone who threw some extra love my way after my last post. I truly needed it. This was a rough week, but your kind words helped my heart hurt a little less.

Second of all, I mentioned offhand in the last post that all of the blood tests for my recurrent miscarriage panel were normal. Well, apparently that’s not true.

Some backstory: I had few tests done in December, right after I found out the baby wouldn’t make it. One of these was a test for something called anticardiolipin antibodies. The short explanation is that these antibodies can cause blood clotting issues.

The anticardiolipin test came back “slightly elevated,” but my doctor said that could just be because I was still pregnant.

So I had the test repeated a few weeks later. It was still elevated. At that point, my doctor referred me to a hematologist for further testing. The nurse I spoke to told me that my doctor “wasn’t that concerned about it,” but wanted me to go as a precaution.

I saw the hematologist on the last day of January. He drew a bunch o’ blood, and a little over a week later, his nurse called and told me the labs were all normal.

Apparently she was just kidding about that, because the evening after I wrote my last post, the hematologist himself called and left me a voicemail. It said:

“All of your labs were normal except for the anticardiolipin antibody, which was high. This is part of Antiphospholipid Antibody syndrome. I think you should go ahead and take baby aspirin with low-dose Lovenox the next time you get pregnant. Nothing to worry about—this just helps us plan better for the next time.”

He of course was not in the office on Friday, so I can’t talk to him until Monday. And my own doctor didn’t have the report yet, so I couldn’t talk to her about it either.

So right now I am just trying to do some research to figure out what the heck this all means. Here’s a definition below from the Mayo Clinic, in case, like me, you’ve never heard of this syndrome before:

“Antiphospholipid syndrome occurs when your immune system mistakenly attacks some of the normal proteins in your blood. Antiphospholipid syndrome can cause blood clots to form within your arteries or veins. It can also cause pregnancy complications, such as miscarriage and stillbirth.”

This condition is often treated with blood thinners, which is what the hematologist recommended in his message.

My actual number on the last test was 96. Apparently anything below 13 is normal. Anything above 80 is strongly positive. I don’t know what my numbers were on the two draws before this one, but I find it weird that they were only “slightly elevated” and my doctor was “not that concerned,” when this one was so clearly high.

Meh. I’ve got more questions than answers at this point.

If anyone has this syndrome or has any information about it, I am all ears! My friend over at Spirit Baby Come Home sent me some helpful links, but most of the other stuff I’m finding online is just broad overviews.

I don’t want to get too ahead of myself before I know more, but could this be the reason for my miscarriages? Could this even be the reason for our infertility? Some of the things I’ve read said that this syndrome messes with implantation, so in that way it can cause infertility.

Could this really have been our problem all along?