Has anyone gotten immunology testing and NOT had anything wrong?

[Anonymous]

Just had a consult with Beers clinic and most everything came back normal - no thyroid, blood clotting, MTHFR or other mutations, no insulin issues - everything great EXCEPT elevated TNF alpha(39) and borderline elevated NK cells.... I went in for the (expensive) consult just to rule out any major immune issues that my RE missed after my miscarriage of 1 PGS normal (first transfer, first pregnancy).

Thy are recommending Humira (or LIT) and IVIG and nothing else. There is just a whiff of scam to all this (it may be that I just didn't like the doctor I consulted with)... but nevertheless - I wonder if anyone ever comes out totally "normal" after this testing.. or do they always find something?

[Anonymous]

IVIG is major, no? I've seen many fraught posts about it here.

[Anonymous]

I imagine they nearly always find something. The population that goes for testing is somewhat self-selecting. You're not going to do it unless you've had problems, usually lots of problems. Miscarriage of a PGS normal is a red flag. Doesn't necessarily mean you need treatment, but obviously you thought it was a possibility since you went for testing.

And even if you want to pursue treatment, there are lots of schools of thought on treatments. I was treated by Abbasi and ran her treatment by Dr. Braverman. He told me it wouldn't work and, I quote, "the only way you will have a baby is to come to my clinic" [and pay thousands of dollars out of pocket]. I said no thanks and proceeded with Abbasi. Got baby on the first try after multiple miscarriages without immune treatments. All this to say you might want to get a second opinion as to the treatment, if any.

[Anonymous]

Anonymous wrote:I imagine they nearly always find something. The population that goes for testing is somewhat self-selecting. You're not going to do it unless you've had problems, usually lots of problems. Miscarriage of a PGS normal is a red flag. Doesn't necessarily mean you need treatment, but obviously you thought it was a possibility since you went for testing.

And even if you want to pursue treatment, there are lots of schools of thought on treatments. I was treated by Abbasi and ran her treatment by Dr. Braverman. He told me it wouldn't work and, I quote, "the only way you will have a baby is to come to my clinic" [and pay thousands of dollars out of pocket]. I said no thanks and proceeded with Abbasi. Got baby on the first try after multiple miscarriages without immune treatments. All this to say you might want to get a second opinion as to the treatment, if any.

what was your Abbasi protocol? im with her now. thanks!

[Anonymous]

OP here - I agree that the women who go in for a consult are self selecting. I think I just really don't care for the Beer clinic aside from their recommendations - the doctor was pushy, seemed like he was not prepared with my case history and the ladies at the front desk only call me when they want my credit card info. I think I will get a second opinion with either Abassi or SIRM NY. I told the Beer doctor I had an infection and asked if that was why my levels were elevated - he said maybe, but to still do the treatments anyway - an answer I did not fully understand, especially given these treatments have potential side effects (like Humira, which he was pushing).

[Anonymous]

I got pregnant with my son on the first try, then started TTC #2 when he was 10 months old. Three years later of TTC every month and nothing, not even a chemical pregnancy, so after doing infertility treatments that all failed I went to see Dr. Abassi. I asked her why I was able to get pregnant on the first try, then have a 3-year dry spell soon after with not a single BFP, and she thought I may have repeat implantation failure. I did the Beers blood test and the results showed elevated NK cells and missing some sort of antibody that I should have had (I forget which one now). She recommended 20 mg. of prednisone throughout the entire pregnancy and IVIG infusions. I am not planning to do these immune treatments. We have given up on trying to have a second child after over 3 years of zero BFPs.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I imagine they nearly always find something. The population that goes for testing is somewhat self-selecting. You're not going to do it unless you've had problems, usually lots of problems. Miscarriage of a PGS normal is a red flag. Doesn't necessarily mean you need treatment, but obviously you thought it was a possibility since you went for testing.

And even if you want to pursue treatment, there are lots of schools of thought on treatments. I was treated by Abbasi and ran her treatment by Dr. Braverman. He told me it wouldn't work and, I quote, "the only way you will have a baby is to come to my clinic" [and pay thousands of dollars out of pocket]. I said no thanks and proceeded with Abbasi. Got baby on the first try after multiple miscarriages without immune treatments. All this to say you might want to get a second opinion as to the treatment, if any.

what was your Abbasi protocol? im with her now. thanks!

I was diagnosed with a clotting issue and a thyroid autoimmune issue. I also had issues with late ovulation and had miscarried 3 times on my own (after a successful first pregnancy). Protocol was IUI with letrozole, followed by intralipids, 10 mg prednisone, synthroid, lovenox, baby aspirin, and metformin. And also wound up on progesterone for the first 14 weeks. I won't lie, it wasn't fun, and it also wasn't cheap. But my baby just turned 3 months old, which makes it worthwhile.

DH and I had decided we would do 3 IUIs or one miscarriage, no IVF. We felt we couldn't afford more than that in terms of the physical and emotional toll, to say nothing of the financial toll. Obviously a very personal decision. I estimate we spent about $6k total out of pocket, including the IUI and trigger, intralipids, copays for all the meds (lovenox was $100 a month!), frequent blood draws. My insurance covered testing but not treatment. We got really lucky.

To some extent you have to listen to your instincts. I got pregnant really easily, I just couldn't seem to keep them. I was sure there was some issue there and autoimmune and clotting problems run in my family, so the dx was not a surprise. DH didn't really believe in it but I insisted on trying. We're both glad we did. But the PP above came to the opposition conclusion that is right for her.

[Anonymous]

OTOH I do have autoimmune issues since my first pregnancy (hypothyroid). Couldn't get pregnant for nearly 2 years, many IUIs, and the second IVF worked, without any additional immune treatment (aside from continuing synthesis).

[Anonymous]

^ synthroid

[Anonymous]

OP - you've probably seen some of my other threads. I have 2 children from FET - I had 1 chemical pregnancy with an untested blast before conceiving my first. I had 1 chemical pregnancy with a PGS tested blast before conceiving my second. Then, in my attempts for #3, I had 2 chemical pregnancies and a BFN with my PGS blasts. Now granted those last 3 chemical pregnancies and BFN with tested blasts were blasts that were frozen, thawed, PGS tested, re-frozen, and re-thawed. So that may have had something to do with it. I also had Asherman's/uterine scarring that was fixed by hysteroscopy, so my uterus itself isn't perfect.

At that point, i was exasperated and went to an immune doc. Like you, EVERYTHING was normal except high TNF alpha. Mine was around 37. He recommended prednisone, and either intralipids or IVIG. We ended up doing low dose prednisone and IVIG with the first of our newly retrieved, newly tested, and once-frozen blast. and I am now 9 weeks pregnant.

I am VERY VERY skeptical I needed the IVIG. My hunch is that it was just finally a good quality blast that had been through less trauma. But I also don't care why it worked. I was willing to do the kitchen sink approach because I was so exasperated.

I do genuinely believe that if you go testing all these people, you're likely to find something. I had 2 kids without any immune therapies. Would I have gotten pregnant this time without that? Probably eventually. It may be a total coincidence. It's hard to separate all the factors (like I said, my hunch is that the factor was that I got a super high quality PGS normal blast that was only frozen once and survived the thaw with 100% cell survival, unlike the last few that had "freezer burn").

IVIG wasn't so bad- it's expensive, and time consuming, but I wanted to feel like I was doing all I could. I couldn't have handled another chemical pregnancy wondering if I should have done the IVIG.

Now that I graduated my RE and am with my OB, I told him about it and he thinks all the immune stuff is B.S. I think even my RE kinda thought it was B.S. to tell the truth.

How far along was your miscarriage?

[Anonymous]

OP here, thanks for all the replies -

09:43 - I have seen your posts and so glad you are finally pregnant after those rocky chemicals. After seeing the HB at 6weeks, the growth stopped around 8 weeks, and my RE saw no heartbeat at my 8 week sono. My body didn't miscarry naturally so went in for a D&C. products of conception tested normal (doctor thought maybe PGS had missed something).

I completely relate to being skeptical. I'm searching for answers and this immunology stuff is the only thing i can think of. I will get a second opinion, but i have a feeling despite the expense and my skepticism i will just do it because if i don't i will always wonder what if.

[Anonymous]

Anonymous wrote:OP here, thanks for all the replies -

09:43 - I have seen your posts and so glad you are finally pregnant after those rocky chemicals. After seeing the HB at 6weeks, the growth stopped around 8 weeks, and my RE saw no heartbeat at my 8 week sono. My body didn't miscarry naturally so went in for a D&C. products of conception tested normal (doctor thought maybe PGS had missed something).

I completely relate to being skeptical. I'm searching for answers and this immunology stuff is the only thing i can think of. I will get a second opinion, but i have a feeling despite the expense and my skepticism i will just do it because if i don't i will always wonder what if.

9:43 again. You've only had 1 transfer though. So different than me where I had 3 PGS normals in a row fail. how many more PGS embryos do you have? can you try again and save IVIG as a backup?

I mean PGS normals usually don't miscarry, and after a HB is even more disappointing, but there's a chance it's just a fluke?

For me, implantation was the problem - early implantation (hence having all the chemicals).