Sunday, November 22, 2009

long, overdue post (immune issues)

A few weeks ago, I promised to do a post regarding my immune issues. Since we are staring up another round of IComLeavWe and might have a few guests visiting the blog, I thought this would be a grand opportunity to give the rundown and a bit of history.

It all started many, many, many years ago when I was diagnosed with a thyroid disorder (hypothyroidism). It wasn’t a huge surprise as several of my female relatives also have thyroid issues. After many years of trying to regulate my thyroid, I seem to have found the trick. Though again, this was years of blood draws, trying different medications, different dosages, moving to Germany and being put on the local stuff (nightmare), all mixed in with a few health care providers trying to save me a dime and ordering the generic. Trust me, spend the extra money for brand name, thyroid meds. Your body will thank you.

Jump ahead and the thyroid is FINALLY sorted out. We arrived in Minsk, Belarus in 2007, already knowing that we had a fertility issue (three years of perfect, NFP charts tend to clue one in to these things) and decided to have some testing done.

The initial blood work was as close to perfect as could be, with one exception, that darn thyroid. Even though my TSH was spot on at around 1, the Anti-TireoPeroxidase was 550.80, with a reference range of 0-34. This immediately clued everyone in that this was very likely an auto-immune thyroid issue and got me sent to the endocrinologist for a thyroid ultrasound. Once again, I was not at all surprised by hearing “auto-immune disorder” because well, my relatives have a ton of those, too. The ultrasound showed that my thyroid is 67% of the normal size and will continue to shrink. Definitely auto-immune, commonly called Hashimoto’s Thyroiditis.

So there we were, quite a bit of time trying by this point, a diagnosed auto-immune issue, a lot of blood work, an HSG, a semen analysis, and a handful of REs (both in Minsk and consulted in the U.S.) telling us that IVF was our best bet, actually our only bet.

Researcher by nature with a medical background, I read medical journals, studies, books, consulted with the experts, etc. etc.. My goal was to have the first IVF supplemented with baby aspirin, steroids, and heparin. Unfortunately my RE in Belarus was uncomfortable using heparin injections until I had experienced three losses. Disappointed is an understatement, but what could I do. Anyway, we did the first IVF with the standards meds, baby aspirin, and a steroid called Medrol. I did conceive triplets, but we lost them fairly early. We went on to do a FET (frozen embryo transfer), but those two never even implanted. And then we had the great political fiasco of 2008 and left the country.

Enter Dublin. I found a great clinic, great doctor, and had a great consultation. After reviewing all of my paperwork he firmly believes that I lost the triplets due to immune issues and my system attacking/ killing them, so I was referred for additional immune testing, first to France, then to Chicago.

Those tests indicated that I have Anti-Thyroid Antibodies, Anti-Nuclear Antibodies, elevated CD 19+5 cytokines, and the Natural Killer Assay numbers dropped considerably when IVIG was introduced.

So the new protocol was set for the standard IVF meds, baby aspirin, prednisone,heparin injections twice a day, and intralipid infusions.

And now you know more about my medical history than you EVER wanted to. There is still a long way to go, but I am now a firm believer in reproductive immunology and the use of intralipid therapy in patients with identified immune issues. I’ll continue to update the blog with resources on this topic that you might find helpful.

More information about intralipids.


  1. Can I say I'm so glad I'm going to your same fertility clinic? :o)

    I'm not sure we'll have intralipids next time, in my case I seem to have borderline values rather than confirmed immuno issues. We'll see!
    Much love, Fran

    ICLW post too!

  2. It is so frustrating when you have to go through so much before you are actually taken seriously. I am so glad your clinic finally did and you were able to identify the trouble and plan a course of treatment to help you create your family. Good luck to you. I wish you much success!

  3. Oh, I am not sure if I mentioned I am from ICLW. Sorry!

  4. Hey there, thanks for stopping by my blog! Wishing you luck with your next IVF - when do you cycle? And P.S. are you still living in Dublin? My Irish hubby and I are jealous! ;-)


  5. Wow. You've really been through a lot so far. So glad you finally got some answers and sounds like things are on the right track no. ICLW

  6. stopping by from ICLW, this was a very informative post about the various issues you are learning about and living with. Thank you.

  7. Thank you for sharing your history - you have been through so much. I've wondered a lot about Natural Killer antibodies so it's interesting to read this take. From what I've learned, it seems that people w/Endo are prone to NKA's as well.

    Also,thank you for your thoughtful post today on my blog.

  8. Sounds like it took a long time, and much sadness, to get answers, but that you do have some answers now, which is great. Here's hoping it's the right combo for you.

  9. I'm glad you found a doctor to take you seriously. I have autoimmune issues too, and all too often have had doctors just dismiss them. Good luck with the next cycle.

    Oh, & I'm just sending you an email about the raw food diet I've been on for the last year - all my immune symptoms stay away as long as I stick to the diet, & my last lot of blood test came back fine!

  10. Visiting through IComWeLeave. :)

  11. lifebytheday: We actually just completed a cycle and I've had three positive betas. Unfortunately I've also had continuous cramping and spotting. Given my history, I'm not very optimistic that this is going to last :( And, yes, we are still in Dublin.

  12. Thanks so much C for your comments on immune meds, it was very helpful. I am collecting everyones different opinions and will talk to my RE in January and see whats best for me. So thanks again! Happy ICLW too.

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