Monday, September 14, 2009

Strike That

Well, evidently, all my research on the NK Cell Assay was in vain.

I spoke with Dr. Kwak-Kim this morning, and what she said was my NK Cells look great right now. The "activity" of them is represented by the B cells, and my number was 1%. Although my T cells had elevated activity, she said that this should be looked at as a percentage of the activity of the B cells- so, 40% of 1% is actually still really low.
As for the 96.8%, she said it's normal to see increased numbers of the CD3 cells when the B cell activity is so low.

Something like that.

She also said I am not quite anemic, even though my red blood cell count and hematocrit were decreased. So that's good(??) - though, I was hoping it was the reason for my fatigue.

Her concern right now is my T3 level. She said although T3 is the "minor" thyroid hormone, research has shown that hyperactivity of the thyroid can cause genetic defects in babies :( So she definately wants to get this under control, and has recommended we start by cutting my dose of T3 in half, and re-checking the levels in 2 weeks. If need be, we may add in some T4, but at the moment, my T4 is within range.

She also said that besides the T3, everything looked really good. I asked her if that was necessarily "good news," since there's not much else to fix, and she quickly responded, "Oh, no, this is definately good. With your clotting factors, you don't WANT to have additional issues with APAs or NK Cells."

However, she said this is not a one-time only test. That things like APAs (anti-phospholipid antibodies) and NK (Natural Killer) Cells can fluctuate, and in fact, 1 of my APA tests from the hematologist came back slightly elevated in May, so already mine have shown proof of fluctuation. She said that in women with the PAI-1 mutation, and PCOS, APAs have a tendency to become elevated once a pregnancy is achieved, so we will continue to check these, along with the NK Cells.

For the moment, here is the plan she recommended:

Continue Metformin 1500mgs, and all vitamin supplementation (Neevo, B6, D3, Calcium, Omega 3s, Cod Liver Oil, etc.)
Decrease T3 dose from 15 mcgs 2 x day, to 7.5 mcgs 2 x day
Do NOT take Zithromax/Macrobid (she thinks if we continue to "flush out" the endometrium, I'll see an end to the brown bleeding!!)
Increase Lovenox to 2 x day starting on CD 6 (or last day of period)
If possible, go back to Chicago for an u/s on CD 10/11 to check blood flow to implantation zone on increased Lovenox
Prometrium/Endometrin starting 2dpo to a -hpt or AF

and...

Injectable FSH!!!

Yippee!!

This cycle, since my thyroid is out of whack, she suggested I do NOT TTC, and that's actually fine by me. I'd rather not waste my Lovenox, anyway. She does want me to take the Prometrium/Endometrin, though, to help with the brown bleeding for next cycle.

We will also continue to check NK Cells and APAs at various times throughout the cycle, and if necessary, we may need to add Prednisone or IVIg to the mix. I'm hoping we won't need that, but, I just went back to look at my charts and see where I was in my cycle for the 3 different APA panels I've had done... all 3 were post-Peak. So, there may a change if I get it done pre-Peak.

I feel like I have been elevated (no pun intended) to a whole new level of infertility. It really stinks!! Whereas before the majority of my readers could relate to exactly what I was going through, now I feel like only Reproductive Immunologists and a small handful of women even know what the heck I'm talking about anymore!! I'm scared to death to go through IVIg, not because I'm nervous about the treatment itself, but because I only "know" 1 woman online who has done it. I don't feel the strength of support behind me anymore, like I always have in the past. Don't get me wrong, I definately still feel the moral, spiritual, and emotional support... but it's like I'm venturing into unknown territory, where no woman (here in blogland, anyway) has gone before.

SCARY!!

But, I'm jumping the gun. I may not need IVIg. Please pray that I won't.

I will hear from the Dr. again on the 16th, when the lab processes my Ovarian Assessment b/w, which I had done on CD 4. Oh, and I asked about ATAs (anti-thyroid antibodies) and she said I just had this test in June 2009, and those don't tend to fluctuate so quickly, and they looked fine.

In the meantime, I am weaning off of Hydrocort (I forgot to tell Dr. Kwak this, but she didn't bring up the Hydrocort, either, so I don't think she thinks it's crucial that I stay on it). Dr. Kwak is drafting a letter to Dr. G-T (my NaPro Dr) right now, with copies of all the lab results and her recommendations. It should work out perfectly, because I have an in-office visit with Dr. G-T next Monday!

Things are progressing. Now I need to figure out if another trip to Chicago is in the cards or not... I think maybe it's a good idea. I don't just want to "guess" that 80 mgs of Lovenox is doing the trick, ya know? Then again, Dr. Kwak said if I can't make it out again, that based on my weight, she has seen that 80 mgs MOST OFTEN will work. Hmmm... decisions, decisions. Would you fly out for another looksy at the blood flow??

18 comments:

Sew said...

If we could swing it I would probably fly. Sure, why not. I mean I would hate to get this far and not see what the heck is going on. :) I know you HAVE to be curious! I say fly! You won't remember the cost of the plane ticket in 3 months anyway! Plus it makes for a grest story! :) Just another star to add to your jacket, Captain!

Also, what is FSH supposed to do!

Don't you want to call me and talk about this!? :( hahahaha

Kathryn said...

Yeah, I'd fly for that if I could.

And I totally feel for you venturing into uncharted treatment waters. I DON'T understand much of what you are saying, but I am convinced that after all this you'll know enough to be an MD!

This_Cross_I_Embrace said...

OK, let me add this to the mix...

Would you fly out to Chicago for another u/s IF - a) you were studying to become an u/s tech yourself, b) had access to Doppler u/s machines both at lab and at your clinical site, and c) could ask the Chief Sonographer (one of the best in our area) to do it for you for free from the comfort of your own home State??


I definately see the perks to getting it done in Chicago. They really did pioneer this use of Doppler for uterine arterial blood flow... but if I could get the pulsatile index and resistance index recorded by my Supervisor at work, then send them those results... maybe that could save me a flight?

What do ya think??

Ann - Building a Nest said...

If you could get it done this time by your Chief Sonographer and feel like he/she could interpret it just as well, & Dr. is OK with having the results sent to them, then I'd probably do that this time around knowing that you could go to Chicago next cycle if there is a next cycle.

Then again, I hate flying so I'd pretty much do anything to avoid a plane!

Sissy said...

I have to admit, I don't understand half of the things you are getting tested for, but they are obviously of some use to your doctor. I'm glad that you are able to communicate effectively with Dr.K-K. It makes all the difference if you can talk with someone.

prayerfuljourney said...

With exceptions to the T3 meds, I have no clue what you are talking about either....I will keep you in my prayers. Lord Willing, He'll see all this effort you are putting forth and give you the reward your heart so desires. God Bless.

Find joy in every journey said...

Unfortunately I understand most of what you are talking about. :(

MAN AM I EXCITED ABOUT THE INJECTIBLES!!!!!!!!!!! (did I say that loud enough?)

This sounds like a good plan.

No, I wouldn't spend any more $ than I would have to, have your supervisor do the u/s. If that doesn't work out go out to Chicago.

Thanks for the update!!!

barbie said...

acutally T3 is the active thyroid hormone it's T4 that's inactive. There are some reasons your T3 could be elevated besides your just taking too much. one is low B12 and another is low vit D, both can cause the thyroid hormone to pool in your blood thus making you appear hyper when in fact you might still be hypo. Did you post your thyroid results?

the misfit said...

OK, it did not occur to me that you have your own private sonography in your hip pocket. I know lawyers, and people who can work on computers - nobody who's really good with a vaginal wand :). So that being the case, if the doc were OK with it, heck yeah, I'd save the cost of a plane ticket. But after she identified that really telling thing about the blood flow to the uterus, I'd *absolutely* want to see what that's looking like. Because it sounds like one of those make-or-break things.

As to being in uncharted infertile territory - I don't think you're more infertile than the rest of the gang, I think you KNOW more about your infertility. Some of us who wind up in the "never" camp may do so simply for the lack of the information that you have. And to be perfectly honest, I only understand about 20% of what everyone's saying even about the "normal" treatment regimens. I have no idea what most of these injectibles do, and I am always vaguely mystified when they are mentioned. There oughta be a book...but, there probably already is :).

mrsblondies said...

If you feel comfortable with the chief sonographer doing it and it's ok with Dr. K-K, save yourself some money (to spend on injectables...so exciting). I hope your thyroid levels get sorted out soon. I do somewhat understand what you are talking about from my anatomy and physiology (I took the pre-med one). I'm sorry that you are feeling uncomfortable with having to be the blog-land pioneer, but your experiences will help someone else.

This_Cross_I_Embrace said...

Oh, I definately didn't mean to imply that I'm more infertile than anyone... haha, that's not a title I covet :) Just that I can no longer bug everyone on the blogs for info about all this stuff! Bummer!!

Barbie, I didn't mean to say the T3 was inactive. Dr. Kwak just said it was "minor" (I guess in relation to TSH, coming from the pituitary).

My D levels were fine (I have been taking 2,000 units of D3 every day), and B12 is one of the "big guys" in my Neevo pre-natal, made for women with MTHFR. (MTHFR also affects the metabolism of B12.) BUT, maybe you're on to something with that, and maybe the B12 is still not quite enough... because my sister just had hers tested and it was severely low. She started taking supplements and she feels MUCH more energy! So it could be the answer about the thyroid AND my lethargy.
Thanks for your thoughts on that :)

This_Cross_I_Embrace said...

PS. My T3 was 7.1 pg/ML with normal range of 2.77- 5.27.
(T4 was .8 with normals of .78- 2.19, and TSH was 1.23 with normals of .465- 4.68.)

barbie said...

how much B12 does that vitamin have in it? B12 is the MOST difficult vitamin for the body to absorb. So many things are involved. if it's in pill form that you swallow you could be getting none of it to very little. if you are deficient, you would need either shots or sublingual B12 which is dissolved under the tongue. and if deficient you'd need up to 5000mg in sublingual a day..... B12 can certainly cause the T3 to pool in the blood as does low iron (ferritin), and low D. your TSH isnt' low in considering how high your T3 is...meaning you don't have a hyper TSH.......how much thyroid meds are you on? what were labs before starting thyroid meds?

This_Cross_I_Embrace said...

I'd have to go back to look at the labwork for exact #s... but I do remember that the ONLY thing that qualified me for Dr Hilgers' T3 therapy was lower-than-normal BBTs. (My labs were all fine beforehand... BUT, I was losing hair back then, too.)

When I just emailed my NaPro Dr to tell her I needed to cut back on the T3, she asked me to take my temps again this month, and reminded me that the end-result of T3 therapy is normalized body temp, not labs.

Ay ay ay... I don't know if I'm coming or going. Sometimes having 14 different Drs isn't all it's cracked up to be!

As for the B12, yes, I think my sister is taking it sublingually... I will ask to have my levels tested on Monday.

Ann - Building a Nest said...

I know it's got to be lonely, but remember most great women were pioneers!

Praying for Hope said...

Hm, tough call. I'm not big on travel, so for me personally, no I wouldn't. I'd get it done closer to home if I could, especially since you have an "in" with your local u/s crowd.

LifeHopes said...

Well maybe you really are in a whole new level of infertility ... but instead of it being a negative thing, its actually positive since you are actually gaining ground on the culprit, or at least ruling out a LOT of potential culprits.

YAY for FSH!!! Woo Hoo!!

Will you be monitored? By whom?
You are getting close, don't give up!!

Oh and sidenote: My favorite thing about ttc is taking breaks:)

Sew said...

Hahaha! I agree about the "breaks" in ttc! They are our favorite things too! hahaha

Okay, so duh, get it done at home.

And in ultrasounding my bowel. Do you think you could just ultrasound on the right/left side of the belly button? I always have pain there? Or is there something that hides the bowel in that area.

Don't forget my bubbies!!!! hahaha Just kidding! hahahaha