NaPro appt today

DH and I both went, because we needed to "re-group" and get a plan going from here, in collaboration with the treatment protocol from Dr. Kwak-Kim.

The one thing I love most about my NaPro Dr is that she is sooo open-minded, and definitely willing to learn more about areas she's not an expert in (like immunology, clotting factors, etc.). When I told her about the Doppler u/s and no blood flow in the endometrium, she was astounded! She thought (just like I did) that this was a SUBSTANTIAL finding, and admitted that when I was first diagnosed with the MTHFR, she really didn't think it had any bearing on my fertility.

She does think I should go out to Chicago for another ultrasound on 80 mgs of Lovenox, the cycle after next (if next cycle is unsuccessful).

The only "bad" part of the appointment was that I was denied injectables :( Just as I suspected, NaPro, and my Dr, are not fans of over-stimulating the female system and manipulating it to our "needs." She also reiterated that I've always responded really well to both Clomid and Femara, and that with the progesterone support in the post-Peak phase, this may be all I need to conceive and then implant with the Lovenox. She said she's noticed that Dr. S is using post-Peak progesterone support more and more with women who are on ovulation inducers, even when their P+7s are already high... and that she is starting to pick up on this, too. Especially since my estradiol is always through the roof in the post-Peak (last cycle was 454), she thinks making the progesterone level nice and high may be "just what I need."

So, while I was a bit bummed about the injectables, I do see her point. She even voiced my true underlying desire, by saying, "You know, a lot of women who have been through this for as long as you feel like they want twins or triplets..." but she basically said that the injectable mind-frame is founded in the ART world, and even though Dr. Kwak is respectful of my wishes to do things naturally, she is probably just thinking, "well, why not hyperstimulate her?" This does make sense to me. I think I'll give Femara one more shot, and then I'm literally going to beg for a low-dose injectable.

As for the thyroid stuff, she told me that she's not concerned about it, because since I'm ON T3, it's bound to be elevated in the labs. In NaPro, the end result of the T3 therapy is normalized body temperature, not clinical labs, so we're going to do my temp-taking again next pre-Peak and check the levels of the thyroid hormones at P+7.

I also feel TONS better about my decision to come off Hydrocort after talking to her about it. I decided to wean off of it since I wasn't fond of the idea of being on it to begin with, especially since it didn't help ONE of my symptoms!! (I still had brown bleeding, still had fatigue, actually the fatigue got worse after a few weeks on it.) But I had read on the internet that people can have hypo-thyroid symptoms if their adrenals are not functioning properly, so I was starting to second-guess my decision.

My Dr. said she is actually glad I'm coming off, and that she's personally leary of the long-term effects of cortisone therapy, herself.

So, we're going to continue on all the same meds/vitamins except for Hydrocort, and Dr. Kwak's letter to my NaPro Dr. also recommended I add Vit. E (Dr. Kwak never mentioned this to me!), so I'll be adding that. I won't be taking the Dr. Toth antibiotics, BUT I will take Amoxicillin again as a mucus enhancer during my mucus cycle.

A good game plan, I think.

NJ Infertility Support Group

The next meeting of the Catholic Infertility Support Group will be:

Saturday, September 19th 10:00am-11:30am

St. John Neumann Pastoral Center, Diocese of Metuchen
146 Metlars Lane
Piscataway, NJ 08854


September's Special Guest Speaker:

NaPro Technology Dr. Jean Golden-Tevald
Dr. Golden-Tevald will lead a discussion on the benefits of new women's health science "NaPro Technology." She will also be available to answer any questions and facilitate group discussion on Catholic fertility treatments, and the cross of infertility in general.

If you are in the area (and I mean even Tri-State!), please consider coming to our meeting. Everyone is welcome!! Directions to the Diocese Center can be found at www.diometuchen.org

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??

NK Cells, Thyroid, Anemia

I had Dr. Kwak-Kim's office fax me over the results from my b/w on August 25th, so that I can prepare my questions for Monday's phone appointment.

They said they're still waiting on one test- and I think, just from looking, it may be the ATA (anti-thyroid antibodies) test.

But what I did receive was VERY interesting.

First, the CBC panel and Metabolic panel. Just your basic blood workup. It showed low red blood cell count, low hematocrit, and low creatinine. The first two seem to point towards anemia, which would DEFINITELY make me feel fatigued!

Second, my thyroid numbers. TSH was on the lower end of the normal limits, which is wonderful. But T3 was HIGH! That explains the other thyroid-like symptoms. FJIEJ and I were brainstorming about why it would be HIGH, but my symptoms are like my thyroid hormones are LOW... and she thinks my body is not converting the T3 properly. That makes total sense. Plus, I may have ATAs.

The most interesting findings were the NK Cell Assay. The first time I had this test done, with the Sher Institute, they found the percentage of my NK Cells that killing out of a ratio of 1:50 (1 target cell, a cell that mimics an embryonic cell, to 50 of my effector cells, or NK Cells). That percentage should be less than 10%. Mine were 6.7 in April.
And that was the end of it.

But Dr. Kwak-Kim's test included a variety of different TYPES of NK Cells- these tests were developed by her predecessor, Dr. Alan Beers, who pioneered the Reproductive Immunology field.

And the results blew me away. Especially once I was able to google what they meant, and found the Dr Beer's website with all of the explanations.

Trying not to get TOO technical for my poor readers, I will list below the results that were OUT OF LIMIT. Then I'll post what the normal range should be, and immediately after each result I will copy and paste what Dr Beer's website says about the result.

%CD3 - 96.8 (% Normal Limit: 60-85)

CD-3 (Pan T-Cells)
These cells are the most important in our immune system. They are low when the immune system is weak (suppressed) and normal when the immune system is healthy. Infertile patients and patients with recurrent pregnancy losses have values in the high normal range. These individuals have immune systems that are strong - even overactive. A strong overactive immune system is associated with a 5% incidence of autoimmune diseases for example, thyroiditis, lupus, rheumatoid arthritis.

%CD19 - 1.0 (% Normal Limit: 2-12)

CD-19 (B Cells)
These lymphocytes are plasma cells that produce antibody of all classes. What does this mean? IgM is the first antibody produced to anything that enters our body. This antibody stays in the blood and then as the immunity progresses it produces IgG (gamma globulin G) that resides in the lymph system. One IgM molecule has the immune capacity of 5 IgG molecules. IgG (Gamma globulin G) lives and repopulates itself in the lymph gland system. IgA (Gamma globulin A) is the last antibody made in an immune response and it resides in and protects the organs, skin and GI tract. When this antibody appears, it means that the immune response is completed and cannot go any further. When IgA responses (organ immunity) are present in any test for reproductive failure it usually means that the patient has an autoimmune process such as lupus, rheumatoid arthritis or other disorders.

CD-19 B cells are almost always high normal or very elevated in women with an immune cause for their infertility or recurrent pregnancy losses. There is often a greater than 12% elevation. This is one of the most important indicators of an immune problem and that the immune system is working overtime. Endometriosis also primes this system into greater hyper-reactivity.

(What's interesting is that mine was LOW out of limit, not high. But wait...)

%CD56 - 1.2 (% Normal Limit: 2-12)

CD 56+ Natural Killer Cells
These Natural Killer (NK) Cells include CD56+/16+ Natural Killer Cells and CD56+ Natural Killer cells with lack of a CD16 molecule. Natural Killer Cells are activated by a pregnancy that fails or a fertilized embryo that degenerates. CD56+/16+ Natural Killer Cells are produced in the decidua and they are even more geared up to kill than those from the bone marrow. They produce large quantities of Tumor Necrosis Factor locally that kills the placental cells and the fetal cells. The normal range of CD56+ Natural Killer cells is 3-12%. Levels of 18% or greater correlate with poor reproductive outcome.

(Again, mine were LOW out of limit... and my TH1:TH2 ratio was also well within range, but I'm wondering what it means to have these numbers LOW?)

And finally, here's the big shocker:

%CD19+ cells, CD5+ - 40.00 (% Normal Limit: 5-10)

CD 19+/5+ (B-1 Cells)
When this population of cells is activated, they produce polyclonal antibodies to hormones, hormone receptors and neurotransmitters. The hormones most usually attacked by these antibodies are thyroid hormones, estrogens, progesterone, gonadotropins and growth hormone. Women with elevations of these cells may be at risk for thyroiditis and the premature menopause. Patients whose levels are 80-90% often stimulate poorly with gonadotropins. Women with high levels often complain of immunological symptoms when stimulated with gonadotropins. These symptoms include joint pain, finger stiffness, headache, lethargy, malaise, fever, depression and occasionally urticaria and hives. These cells like the CD 3/IL-2R+ cells are elevated in autoimmune disorders and in situations where a person is rejecting a bone marrow transplant from a compatible donor. There is no question that they are involved in early embryonic loss or damage.

Holy. Crap.

OK, so mine aren't up to 80-90%, which explains why I have been able to respond well thus far to ovulation meds. But, attacking hormones and hormone RECEPTORS??? Makes sense! And how about that last line?? "There is NO QUESTION that they are involved in early embryonic loss or damage." Whoooooaaaa. Blows me away.

As if MTHFR wasn't enough! Now I have some more to fix.

I'm actually pretty psyched about it, because (and I know I sound like a broken record), this all just MAKES SO MUCH SENSE TO ME!! DH and I were talking about it last night, and he said, "You know, honey, I can't remember the last time you had a cold, or a sore throat, or anything!" It makes a lot of sense to him, too. My immune system is overactive.
Not to mention my poor blood. I was googling anemia, and causes of sudden iron deficiencies, and they said frequent blood-giving can cause it. In parenthesis they said (more than 3 times per year). HA! How about more than 3 times per month? Yeah, of COURSE I have anemia, how could I not??!!

So, Monday I'll have a plan of action. But before then, I'd like to close with some more great news... drumroll please...

AF WAS 6 DAYS LONG THIS CYCLE!!!!!!!

Yes, I had some brown bleeding (2 days of spotting CD 5 and CD 6), but a 6-day AF is UNHEARD OF FOR ME!!! I am sooooo excited!!! Plus, it would seem that the brown bleeding may not necessarily be connected to the Chlamydia anymore. I think it has more to do with the immune issues/blockage of blood flow in my endometrium. I am sooooo happy to not have a 10 day period, this is a miracle!!

I love getting healthier, woo hoo!

To Ovulate, Or Not To Ovulate...

that is the question.

Ever since my ovarian wedge resection, I CAN (miraculously) ovulate without ovulation inducing medication.

But lately, when I had to stop taking Femara for Dr. Hilgers' Hydrocort protocol, when I ovulate, it doesn't seem to be a very good one. I had premenstrual spotting for the first time ever both cycles on Hydrocort alone (no Femara).

So, me like-y ovulation meds.

This cycle, Labor Day weekend messed me all up. I was supposed to stop taking progesterone on 10dpo with a negative hpt. But "just in case" it was too early (who was I kidding?), I waited until 12dpo, took my last dose, then tested 13dpo am.
By then, it was obvious that CD 1 would come at an inopportune time. I needed to get blood work drawn and shipped to Chicago for Dr. Kwak-Kim on CD 3 this cycle. It was looking like CD 3 would be either Sunday or Monday (Labor Day)- eeek!! So, back on the progesterone I went, to try to hold off AF as long as possible. And even though I took it Friday night, AF arrived on Saturday, making CD 3 Monday (Labor Day).

Obviously no labs were open, so I needed to hold off and get the CD 3 b/w on CD 4, Tuesday. BUT, I didn't want to take my Femara TWO days late, instead of just one day late, so I decided to ask my Dr for Clomid this cycle (to start on CD 5) instead.

Long story short (is it too late for that?): DH went to pick up the prescriptions, didn't check the bottles before coming home, and there is no Clomid. Called the pharmacy and they said no Clomid was called in, but they did get a call in for Femara. Greeeeat.

We are also not taking the Zithromax this cycle (protocol for the CT), because a) it made me feel crappy last cycle, and b) our insurance is no longer paying for all 12 pills that each of us needs, instead they cover 6 per person per cycle... so we were paying $200 for the stuff. I decided to fill the 6 this cycle, and save it for next cycle. In the meantime, we are taking our Macrobid, which is the other antibiotic we take cyclically (not nearly as strong as Zithromax, though).

I'm really not sure what to do this cycle. If we should just not try, or what. I speak to Dr. Kwak-Kim on Monday, and will ask her advice, but more than likely, we'll take this cycle off. Which sucks. Because, unlike normal people who can just use infertile days to avoid, with the Chlamydia (and no Zithromax), I'm way too scared to have any sex at all and mess up our potential fertility in future cycles.

This sucks.

CT sucks. It has given me the biggest complex, but that's a whole other post.

Alright. Bring on October, with its injectables, horse-strength antibiotics, steroids, and IVIG (maybe?)!!

Some Updates

I was pleasantly surprised to get a call from Dr. Kwak-Kim's office today. Yesterday, I happened to call them to ask about my meds for this upcoming cycle- she wants me to do an ovarian assessment (b/w) and have it shipped to her on CD 3. However, my current Femara protocol is to take all of the pills on CD 2. I knew that as an estrogen-inhibitor, this would affect not only my estrogen but my FSH levels on CD 3. So I called to see what I should do. The nurse said I was right, that I should hold off on the Femara and take it CD 3 AFTER the b/w, instead.

Today, they called again. This time, to schedule my phone consultation to review my blood work results from Aug 25th!!! I was not expecting this so soon, because everyone else has said (including Dr. Kwak-Kim herself) that it takes 3 weeks for all the results to come back. But I assume that since I had a bulk of the immunological testing done already, that maybe she didn't repeat some of those tests like the APAs and DQ Alpha and NK Assay.
The first available time slot they had for my phone consult was Monday, September 14th. Still, pretty good! I can't wait!

I started my first clinical days for sonography this week. I go in twice per week to a local imaging center, and it has been wonderful so far! My "mentor" is the main tech, who has been doing this for 30 years and knows EVERYTHING about ultrasound. He has been so helpful already. His imaging center is also mostly ob/gyn, so I'm seeing a bunch of gynecological sonograms that really interest me. (Fibroids, polyps, adenomyosis, etc.) I did see an 18 yr old come in for an early pg scan, with what I can only assume was the boyfriend, AND a girl friend. She was only 5 weeks along, and when the tech asked why her Dr ordered the scan so soon, was she experiencing any pain, she said, "Yeah, I had some sharp pains in my back about 3 weeks ago." The tech just looked at her and said, "Well... you weren't pregnant 3 weeks ago." Then when he scanned her and measured the corpus luteum, she asked, "Is that normal??" I swear... how is it that women who know nothing about their bodies can manage to get pregnant?

Insanity. I think that MTV show "16 and Pg" really glorified teenage pregnancy. The fact that she brought along her entire "support team" to a 5 week ultrasound tells me she's not at risk for abortion, but clearly adoption is even further from her mind. I had to bite my tongue to not offer to buy her baby!!

My fatigue has been getting worse, and worse, and worse. I called PPVI today to ask if I could come off the Hydrocort, because it is clearly not working. I think Dr. Kwak-Kim prescribes a low dose of Prednisone, anyway, so it's better if I come off the Hydrocort now. PPVI said it was fine to come off. I expressed my concern over the fact that I've been on it for so long (over 6 months), and that my symptoms at first got better, then progressively got worse. Frankly, I'm a little ticked that my care was not managed better with this medication, particularly since I expressed such concern when I first went on (my Grandmother had Addison's Disease, and I was afraid that by supplementing adrenal hormones, my adrenals would shut down and stop producing altogether).

I'm so freaking exhausted lately it's not even funny. It's ridiculous. I'd jump back on the coffee wagon, except caffeine is supposed to inhibit blood flow to the uterus... so really the only thing left for me is cocaine. Anyone know any good dealers? :P

Gotta run, I have my first follow-up with my new long-distance transfer client... Waiting for Baby Blondie :)