Tuesday, 21 June 2011

What Now, Doc?

I'd like to say I went to the Doctor's yesterday with an open mind. That I would see what he had to say, and make my decision based on that.

As it happens I was already pretty convinced of my next moves. I had a list of tests I wanted and I assumed he wouldn't do then, I figured I'd gather up copies of my notes and move on without a backwards glance.

It turns out I was wrong.

The first thing I hadn't counted on was that I like my Doctor. This man has seen my vagina more regularly, and over a longer sustained period, than anyone other than my husband. I'm not a one night stand woman, this to me means real commitment.

So, it was nice to see him again.

The other thing was he didn't dismiss my list of test requests out of hand but gave me clear answers as to how useful he thought they were.

So this is his reaction to my list, and I shall prefix it with a massive disclaimer:

DO NOT BLINDLY BELIEVE THIS, WHAT I HAVE WRITTEN BELOW IS MY INTERPRETATION OF HIS LAYMAN-FRIENDLY ADVICE. HE MAY HAVE OVER SIMPLIFIED, I MAY HAVE MISINTERPRETED. HIS ADVICE RELATES TO MY UNIQUE CIRCUMSTANCES NOT YOURS. BY ALL MEANS ADD THESE NUGGETS TO YOUR OWN RESEARCH BUT IT IS NOT THE BE ALL AND END ALL.

Got it? Good.

I shall continue.

Immuology tests - Theses tests are wide and varied. You can test for Natural Killer cells, for Auto Immune issues, Cytokine ratio, Lymphocyte Antibody Detection, I could go on. The idea behind these tests is that as the embryo is growing in my womb my body might detect it as a foreign body and start attacking it, especially if I am allergic to my husband whose DNA makes up half of the embryo.

Some Doctor's dismiss this as a load of rubbish.

Mine didn't, however he did caution a couple of issues with these tests. What happens if immune issues are discovered? Treatment is, at best, controversial.  One treatment is to take steroids during IVF and early pregnancy.  This has been shown to increase the risk of a cleft pallet in children.  Not a life threatening concern - obviously - but equally given the option not one you'd necessarily choose.

Another treatment is IVIg which, you can do your own research on, but my Doctor's concern is the long term effects of this treatment is not known.

Also one's body's immune system ebbs and flows, like when you get hay fever depending on what different pollens are in the air - if I had a test for that when it is particularly bad my blood count would be off the scale and allergens apparent.  In mid-winter I wouldn't show anything. Given that the tests cost in the region of £800 for what might be an inconclusive result he didn't think it was worth doing.

The treatment he best favours for immune issues is Intralipid Infusions. The infusions are a mix of protein and fats and nutrients. The proteins are derived from egg whites. Essentially it sounds like I'll get an intravenous dose of mayonnaise (and apparently it is about as calorific). The infusion was first used in coma patients and the Doctors notice that it has anti-inflammatory properties. So it seems to help with um... inflammation caused by immune issues.

Anyway, the point is the treatment isn't very costly, the tests are. Therefore my Doctor said that if we do IVF again with him he'll just do the Intralipid treatment anyway.


Thrombophilias (MTHFR) - This aptly named motherfucker increases ones propensity to blood clots. It can be a factor in reoccurrent miscarriage. But a) I've never miscarried and b) as a default my clinic prescribed Fragmin for my last two IVFs which would have prevented this being an issue anyway.

DNA Fragmentation -  I was pretty convinced this was the one. DNA fragmentation, in the sperm, doesn't show up on the main tests. Motility, quantity and direction all looks great, however it is only when the lads are scrutinised at DNA level that their flaws are truly revealed.  This, I conjectured, might be why I get embryo's but they don't hang around to be frozen and don't implant.  My Doctor was dismissive, he felt DNA fragmentation was again more likely to result in miscarriage than non-implantation.  And, more convincingly, he said it was likely to be more of a problem with ICSI, when one sperm is chosen to be injected in the egg.  In my case, with hundreds of thousands of the suckers swarming around my egg, he is a believer in fertilisation of the fittest - and thinks it is unlikely to be a factor.

That is the response to my tests enquiries, there's more but frankly this post has gone on far too long already and I am sure we all need a break. 



12 comments:

  1. So, MAYONNAISE is the answer? Well - I never!

    Obviously, I am all for it, though, if it works.

    ReplyDelete
  2. Wow - these are very helpful and a lot more informative than I got from my doctor. Thanks for sharing!

    ReplyDelete
  3. I'm so glad that beautiful binder of records was received with the respect it deserves. While I'm sure having a clearish roadmap and being treated like a partner in this whole awful process is cold comfort, it's got to be tons better than being dismissed.

    ReplyDelete
  4. Glad it was a productive session and your research and questions were taken seriously. I met too many dismissive medical professionals when I was having treatment, good to hear yours isn't another one of them.

    ReplyDelete
  5. We had the DNA test done and DNA fragmentation was a problem but after some treatment, it resolved. Cost about €400 for the test.
    I had the natural killer test too and yes was €800. The thing re not having the test is that I think they need to know what strength intralipids to give you but I know some clinics here don't do the test here and just give the intralipids just in case. Over here, it involved an appt before implantation and an appt 2 weeks after and each appt takes about 2 hours - bring a good book!

    ReplyDelete
  6. I used the intralipids for our last cycle bc of elevated NKa cells...200,000 calories in that little bag!!! It is worth it if it works :)

    ReplyDelete
  7. I spent $300 + dollars to get the natural killers test (I was positive) and then applied a $30 treatment. I always wondered why we didn't just treat rather than pay for expensive test. Your doctor sounds like my kind of doctor.

    ReplyDelete
  8. I left you a fantastic, well-thought-out comment, giving you the benefit of my experience (i.e. assvice), and google ate it.

    So, I will just echo Twangy with Mmmmm - Mayonnaise!

    ReplyDelete
  9. Mayonnaise is, after all, the answer to a lot of problems.

    Must ask my own doctors abut mayonnaise. Very useful post, this. Thank you.

    ReplyDelete
  10. So that's why I put on weight back then! Crikey, I paid €270 per treatment, huge difference between countries - ridiculous.
    Just coming back again re the DNA fragmentation, not saying my consultant is right but she was of the opinion that problems with the fragmentation is the reason why so many IVFs fail and their success rate has increased due to working on the fragmentation, If you are going to be spending a lot of money on IVF (let alone the emotional turmoil), my tuppence worth is that it could be a test worth doing, if only to eliminate it from your enquiries!!
    Good luck xx

    ReplyDelete
  11. Interesting responses and pretty much what I expected. In terms of the autoimmune issues, I think he's on the money. The NK test, for example: circulating NK's in the bloodstream vs. NK uterine cells can yield very different results. And the very same test can yield different results if given only hours apart. The intralipids sounds smart (I was geared up to do them but didn't because my cholesterol is so high). In terms of the Fragmin, this also makes sense. The only point at which it stops making sense is if a pregnancy becomes established and you are instructed to STOP taking it. At this point, I'd make sure you know those results (though, doctors vary in their opinions about whether it's necessary for even MTHFR, depending on the mutation, etc.).

    Am a bit more skeptical about his take on the fragmentation. Yes - this is what we were told, as well. But this one also has one of the easier fixes (unless there's something like a varicocele going on, which is unlikely if his other numbers aren't affected): get your husband to take the antioxidants anyway. They can only help. In our case, that's all the doctor ordered. Who knows if it's what made the difference (but it might have been).

    (I'll send you an e-mail with those details).

    ReplyDelete

I've resisted word verification for ages but I'm getting so many spam comments at the moment that I think it is time. Sorry!