Home » Autoimmune » Finally- Some Answers

Finally- Some Answers

I need to take a breath before I post this. I am an intense ball of “need to google everything” right now, but I also wanted to put this out there for all you super smart fertility people.

So, I got a phone call today from our RE’s head nurse. We got my natural killer Th1/Th2 results, and they are abnormally high. I am very TH1 dominant. In a normal person, TH1 and TH2 should be balanced, as each is responsible for protecting the body against different pathogens. I will write a more informative post about this another day. Right now, I’m just trying to process this new important piece of information.

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They want me to start intralipids next week on cycle day 13. I’m supposed to bring a pillow and a blanket because it involves having me hooked up to an IV for 2 hours. It will cost us $750, but I am willing to do just about anything for this to work.

I am worried about my prognosis for a successful live birth, even with the intralipids. Since I know so little about this, I’m going to spend the evening researching the fuck out of it. My plans were to set up the Christmas tree, but that can wait.

I know a couple of you are also on intralipids. Can you tell me what it feels like, what success you’ve been told will happen with it, and also anything else you think can help me wrap my head around it.

So far, all I know is that being TH1 dominant is related to a slew of autoimmune issues, and explains the Celiac Disease that I have. I also know that stress shifts the dominance even more so in favour of TH1. While stress as a cause of miscarriage is kind of a weak claim, I think that my extreme stress at work during the beginning of the school year certainly could have worsened my TH1 dominance. Next week, I will meet with my family doctor, and get an extension on my medical leave. There is no way that I’m going back to work when I’ve got an embryo transfer happening in two weeks.

Anyways, I’m gonna go google like it’s going out of style, and will post again sometime tomorrow.

Happy Humpday!

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35 thoughts on “Finally- Some Answers

  1. Immune test results are awful because there isn’t a lot of medical consensus out there. The normal paradigm is diagnosis–>prognosis–>treatment. This paradigm seems to be…test result–>freak out—>Google—>turn to friends with similar diagnosis—>Google—>throw your hands up and try what other people are doing. That’s basically all I’m doing for my morbidly high NKs. 🙂

  2. I am still waiting for my results (and am getting rather impatient, I should have had them last week!), so I have nothing really to share. I really think you need Spirit Baby to post her amazing knowledge from her own experience with interlipids.
    I do like you plan to stay out of work a little longer. Even though the stress component is really weak scientifically as a cause for miscarriage, I think it’s a great idea from the psychological perspective of everything you are processing and gearing up for in two weeks. I think that’s one of the smartest thing you can do right now.

    • Thank you. I hope you get your results soon. I am a bit sad to have evidence that my immune system killed our embryos, but relieved that we finally have some answers. I just really really hope the intralipids work. My RE hasn’t prescribed steriods, which I have read a lot of RE’s add to the treatment for high TNF-a.

  3. Thank goodness you’ve finally got some answers. I don’t have any knowledge to share in the subject. Despite the fact of the results, I imagine you must feel somewhat relieved to have an explanation and a game plan. Good luck with everything! Xx

  4. I know getting those results can be a lot to absorb and take in. I also had high NK cells with t1/t2 and tumor necrosis factor. I have been on intralipids (and lovenox) this cycle since before my frozen transfer and it doesn’t feel bad at all. My wedding ring gets a little tight the next day but that’s it. Overall, it was a surprisingly painless process. After a few sessions of intralipids, they re-did my NK panel and my levels were within normal range so it definitely worked. Not sure if you’re in the U.S. but I paid $125 using ambient home health care. I also called around to several home infusion and home health care / home nurse vendors and found rates ranging from $150-$300. If you can shop around, do so. You might save a lot. My RE says I need to be on the lipids through my first trimester. I currently have it done every three weeks. Wishing you success with your treatments!

  5. So good to have some answers and something that you can do! I feel the same way about how my anti-thyroid antibodies probably killed my babies too – it’s a hard thing knowing your own body might be the cause – I wrote bout it recently when my TSH results came back super high. Good luck with the treatment.

  6. Wow I’m sorry about the news. Hopefully it’s a good thing to know and can now be looked into further and treated. I’m still frustrated that my RE can’t run those labs and doesn’t believe in them. I’ll be interested to know what your doc says.

  7. I know a fair bit about this as I’m TH1 biased and had NK activity in the 98th and 99th percentiles before my current protocol. I’m going to be blunt, take what you wish and leave the rest. First, I don’t think you should run this cycle without a proper immune work up. I see enough in your history and limited blood tests to convince me you likely need more than Intralipids to sustain a pregnancy. I’m not a Dr. I could be wrong. But I doubt it and I say this from a place of genuine compassion for and caring about you and DW’s wish to be parents to a living child.

    Since I doubt you will take my advice (I’m not judging that, I ignored myself for many cycles at my own and my embryos’ peril), I can tell you about IL. They feel like nothing going on but afterward I can tell they do something especially my first few treatments. Less inflammation in particular (for which is what the Th1 bias cytokines are famous). $750 is pretty steep (I paid $375 in New York and that’s double what a friend in Florida pays) but if you’re going to go ahead with this cycle I would pay whatever too. Don’t expect insurance to cover IL; it’s the only thing mine won’t pay for in the meds dept. Intralipid and prednisone are relatively effective at lowering NK cell levels and activity. Without more comprehensive testing you’re guessing at how to treat the Th1 bias but IL should not elevate it.

    How many Tx of IL is your RE suggesting before transfer? Ideally you’d have at least a few.

    • What other work-up do you suggest? We’re very limited here in Canada, as I’m sure you know from MPB’s blog as well. What other meds do you think I should be on to cover all bases? I notice that many women are also on some kind of steroid, though my RE is so conservative, and I’m taking baby aspirin behind his back already as it is. I’m not sure how many IL treatments before my transfer. I suspect it will only be one, and then another a few weeks later. I am not sure though. I have read that one infusion lasts for up to 28 days…

  8. Also, reading your question of others: lovenox is often Rxed for therapeutic not thrombophilic reasons. I’m on it, neupogen and prednisone as well as biweekly IL (I was on weekly for a month until just before transfer). My protocol and detailed lay review of diagnosis are on my blog. Let me know if you need help finding them. Go check out Braverman’s website and blog. It will cut to the chase from his perspective with which not all RIs agree. All the best, my friend.

    • I have no problem being on the gammut of meds to make this work. My challenge is convincing my RE to prescribe them, as they are very “indication” conservative here. They need “proof” that I have a problem that specifically requires these meds. I need to somehow convince him.

      • Right. The problem is they dont have a hot clue how to test comprehensively so any meds are a guess at best which might be a gamble worth taking if you had several embryos left but with one transfer left it seems short sighted and very typical of our backwards health “care” system. Some people do well with the kitchen sink of meds without knowing what their real issues are and how they might interact. But if you cant get the meds are you okay risking the transfer not working or still ending in loss? I wish you had better options. Of course cancelling to find someone who will Rx (there is a doc in Montreal) is an option too if your RE refuses to play ball.

      • Yeah, I know. Well we are all paid up and ready to go for this FET in a week and a half. I don’t think I can handle cancelling it to find someone to dig deeper at this moment. I am just so hopeful that this is going to work, and trying to have faith that the intralipids are enough to make the difference.

  9. I know this is a whole lot to be thrown at you but when I found out my results, I was relieved. My RE was SO sure that we would have a successful cycle after IL treatment and he was right. I had intralipid infusions before and after transfer. It’s really such a benign transfusion with virtually no side effects- we give it to our NICU babies as part of their nutrition. If you want some more information from an RE who has done extensive research on this- go to http://www.haveababy.com and search in the upper right for “natural killer” or “intralipid”.

  10. If you don’t mind me asking where you are located? I am trying to find a doctor who will test me for Natural killer cells. Thank you in advance : )

  11. It still hurts my heart that they let you go through three losses before running those tests, but so glad you finally got an answer and hopefully the right treatment.

    • I know, me too. I’m quite angry about it. I had to push really aggressively for them to test me even. They wanted three losses of my own before testing. They didn’t even test DW for this after her second loss!

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