OK– new blood test results and maybe, maybe, hope.

4 09 2013

So… counseling is going well… no firm answers or conclusions yet but we’re making some progress.  And hubby has retrieved the TTC project from the back burner and proposed a FET in November.  To which end, we plunked down another $500 or so for a new immune monitoring panel a la Reprosource/Dr. B.  And…. drumroll… here’s the results report:  [spoiler alert: it ain’t good.]

“Ok so all of your IC (intracellular) cytokine ratios are elevated (greater than the 90th percentile compared to all in our practice) .  Although you don’t have a typical HLA haplotype c/w with an autoimmune etiology for this , we did notice that you are homozygous for a rare HLA B 51 and your husband even has a copy , typically seen in the middle east (Turkey) and associated with an autoimmune vasculitis. We can’t prove it but have to consider with the elevations in your levels that there is some autoimmune component. Regardless the treatment is still strictly anti-inflammatory  i.e. . prednisone / IVIG/ and even yes Humira (your TNF levels are very high even in the serum.) Of course we have to also go back to diet and cutting out Gluten /Dairy products and I think going organic is important ( I know its extreme but patients with these levels are so sensitive to allergens I think the diet modification is important.  But I think treating and repeating testing before starting would be valuable with these levels.

 See results below.


  • 8-22-13
    • IC ratios
      • All ratios elevated (most of them very elevated) with the exception of TNF:IL-4 in CD8+ and CD4+ T cells, and IFN:IL-4 in NK cells (and even these are borderline elevated)
    • NKa
      • 50:1 = 6.6 (low)
      • 25:1 = 3.9 (low)
    • T-RIP
      • NK cells
        • Elevated total NK cells (CD3-/56+)
        • Elevated CD16+ NK cells (CD3-/56+/16+)
        • Low CD16- NK cells (CD3-/56+/16-)
      • NKT cells
        • Very elevated CD4+ NKT cells (CD3+/4+/8-/56+)
        • Low CD8+ NKT cells (CD3+/4-/8+/56+)
        • Low CD4-CD8- NKT cells (CD3+/4-/8-/56+)
      • T cells
        • Very elevated CD4+ T cells (CD3+/4+)
        • Very low CD8+ T cells (CD3+/8+)
        • Low activated T cells (CD3+/HLA-DR+)
        • Elevated Tregs = 6.6
      • B cells 
        • Low CD5+ B cells (CD19+/5+)
    • CBC
      • Low WBCs (3.9)
    • Serum cytokines
      • Significantly elevated G-CSF (877.8)
      • Elevated GM-CSF (53.5)
      • Significantly elevated TNFa (21.4)
      • Elevated IFNy (52.1)
      • Elevated IP gamma induced protein 10 (491.8)
      • Elevated IL-1Ra (263.0)
      • Elevated IL-12, p70 form (27.7)
      • Elevated macrophage-derived chemokine (2510.0)
      • Elevated VEGF (1555.0)
      • Elevated IFNa2 (90.2)
      • Elevated FGF-2 (629.1)
      • Elevated Flt-3 (122.9)
      • Elevated fractalkine (222.0)
      • Elevated MIP1b (61.6)”

So… shocker… the cost of the estimated amount of IVIg I’ll need to get through first trimester, assuming insurance won’t cover (and I pretty much guarantee it won’t) is about $16k.  Oh, and the Humira, hopefully, I get nearly free from Abbott Labs because my insurance refuses to cover it and they consider me uninsured as a result.

Second shocker… a friend in my office, who is 36 with a gorgeous 7 yr old son and no plans for another child, has twice, seriously, offered to be a gestational surrogate for me.

Asked Dr B for what surrogacy would do for my odds, given that I have two blasts (an A- and a C) on ice… and he said “Significantly better with a surrogate. Remember your levels are greater than the 90th percentile for patients in my practice(I did not compare you to the population as a whole) , and my practice is already dealing with high cytokine patients.”

She’s talking to her husband tonight.  I will talk to mine, if not tonight, then soon.




One response

4 09 2013
Emily (eatloveprocreate.blogspot.com)

Glad to see you posting with new info. I’m sure it’s a lot to absorb, but it sounds like you have a real silver lining with your amazingly generous friend offering to carry for you! Wow, that is truly awesome! Battling the autoimmune stuff and trying to carry on your own vs. perhaps increasing your chance at a take home baby by cutting out the suspected problem altogether….it’s a tough decision, but either way the goal is the same in many way, right? I’ll be thinking of you as you discuss it with the hubs, sleep on it, and come to the decision that’s right for you two. Happy to hear you’re back in the game. 🙂

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