Blood lab results, round 1

As my blood lab bruises from last week are finally fading away, I have one round of results back from the lab: the antibody tests. Still waiting for the karyotype serum testing results. Those apparently take ~21 days to complete. Links go to descriptions of tests. Normal ranges in parens; green = ok, red= something wonky.

• Thyroglobulin antibodies: less than 20.0 iU/mL [20 or less than 20]
• Thyroid peroxidase antibodies: greater than 1000 IU/mL [0-34]
• TSH: 0.06 uIU/mL [0.4-4.50]
• Thyroid stimulating immunoglobulin: 102 [less than or equal to 125]
• Antiadrenal antibody screen: Negative

I've tried my Dr. Google hat, and it hasn't worked much, except that I think I have Hashimoto's thyroiditis? I have no clue. I have an email out to my dr, so we'll see what he says.

Assuming I have no genetic defects re: Fragile X, this is good news for having my own genetic children... I mean, it doesn't really feel like good news at all what with lifelong health concerns, and the fact that my numbers as they stand now usually result in increased miscarriage and IVF failure rates... but at least there might be a longshot chance of me having my own children?

Chalk 1 hash mark in the victory column? I guess?

Why am I not feeling terribly reassured by this?

The results are in...

Sorry for the delay in posting about Friday's appointment. Work has been busy, and I just needed the weekend to relax and take my mind off of all of it. If this post feels a bit sterile, it's b/c I'm battling a raging migraine right now, and honestly, I'm just pooped from thinking about all things IF right now.

POF has been confirmed. My FSH, LH, and estradiol levels were virtually the same as they were just over a month ago, thus confirming that yes, my ovary isn't working right. My pituitary gland is pumping out tons of FSH to compensate for the lack of estradiol.

Now that the issue has been identified, finding the cause will guide the next steps in terms of family planning. I had seven - yes, seven - vials of blood drawn after my appt Friday. Not only am I a terrible draw to begin with (thin, spongey veins that roll easily), using a butterfly needle (my SOP when it comes to blood draws) took for. ev. er. to draw all that blood and has left me with two huge, ugly bruises on my arm that a coworker half-jokingly asked if I was being abused at home. And it's not the inside of my arm- we're talking about 4" from my elbow on my left forearm... had to hit the same vein twice. It was pretty agonizing. I came this close to passing out b/c I made the mistake of watching her draw my blood.

So, 2 possible scenarios I'm being tested for:
1. Fragile X syndrome: a chromosomal defect affecting part of my X chromosome. Normally, this causes severe mental retardation. I suppose I'm "lucky" in that my manifestation would only affect my sex glands and basically, I've run out of eggs entirely. Fun.

2. Anti-adrenal antibodies: my body could be attacking itself. Dr. Gross described it as this: my body could be creating these antibodies that are blocking my ovarian follicles. My pituitary gland is pumping out these hormones, but it's like my ovary is wearing ear muffs and can't hear the signal to ovulate.

If I have just Fragile X, I'm up shit's creek re: having my own biological genetic children. At this point, I've already cut my losses emotionally. If I have just antiadrenal issues, then there is anecdotal evidence to support that I may ovulate on my own using either birth control or recombinant-FSH. In other words, it's a long-shot at best that I'll have my own biological genetic children. Health-wise, I would need to take supplements to fix the lack of adrenal function, and wear a medical ID bracelet b/c the first thing I'd need in an accident is a cortisol shot.

If I have both, which is a possiblity, then it just gets super sad. Because yes, I could, with longshot odds, have my own children, but do I really want to pass on the same genetic defect? And I think ethically, a fertility clinic wouldn't allow that anyway. So.... yeah. That sucks.

Playing the waiting game again. Next appointment is May 29. Genetic & antibody testing takes a lot longer than just straight up hormone testing, so I get to wait a lot longer for these results. That should be a fun appt just a few days after my 27th birthday, and the day before one of my good friend's baby shower. Hooray!

Do I sound bitter? I am.

On the plus side: got my copy of Navigating the Land of IF, by the fabulous Melissa Ford, maintainer of Stirrup Queens. So far, the book is exactly what I've needed emotionally. I will post a review once I've finished it.

It's Like Final Exams in my Vagina

Pillowman was excellent last night. For a student production, that was one impressive performance, from acting to design- the set design really was brilliant. It was a nice distraction for a few hours, but when I got home, I started doing some last minute reading and research, filling in my husband along the way so he has some basis for understanding at 3pm today.

Whether it was asking the obvious "Well, can you just lower your FSH?" to getting into more detailed discussions on hormonal balances, Clomid, injectables, IVF protocol, etc.; it felt like I was studying for a final exam more than getting ready for a doctor's appointment.

The migraine then, was a relief. I popped a few Advil and conked out much easier than if I didn't have the migraine. In fact, I got one of the best night's sleep in a while last night.

I have been trying not to think about it all morning, and so far, it's worked. Busy day at work: interview, finishing a newsletter, working an open house, and I even get to leave an hour earlier today b/c I worked 10 hours on Wednesday. I am trying desperately to remain positive, despite knowing the potential outcome of today's appt.

29 hours, but who's counting?

I'm really not looking forward to tomorrow at 3pm. In fact, I am going batshit insane over tomorrow.

There's just something about hearing your diagnosis in person that fills me with dread. And while I know that this followup could cover anything, I'm pretty sure POF will be the solid diagnosis. I need to really mentally prepare myself for tomorrow, and I haven't at all. I've been lil Miss Escapism for the last two weeks (friends of ours lent us their DVDs of Battlestar Galactica, and we've starting averaging about 3 episodes a night... we're almost halfway through the series).

I've done a lot of work researching, preparing, telling myself I'm beautiful, I'm just as much of a woman, a wife, and someday a mother- that this isn't some kind of punishment from God, or that I did something or didn't do something to cause this. I've had a non-stop inner monologue for over a month. I feel like a lot of it is slowly eroding away in anxious anticipation of tomorrow. A can tell you- I do a great job of psyching myself out for things. The takeaway lesson: I need to do a better job of managing my stress.

After reposting my NIAW info on my FB page, I've had 3 people I've known "come out" to me about their struggles with infertility. Just based on how different all three people are, it's humbling to see that IF can really strike anyone. I'm so sad that this is something I share in common with them, but I'm strengthened by having this new support network of people I know who can really relate to this.

Tonight: more escapism. A and I have 2 tickets to a local production of The Pillowman (a very dark, inventive play). Tomorrow I have an open house to work, then lunch, then this appt.

28.5 hours.

The Waiting Game

Blood just drawn, and despite my best efforts, they went in through the back of my hand. The lab tech was pretty good; quick, patient, and hopefully minimal to no bruising.

Predictions: FSH very high, LH mid range normal, estradiol very low.

Won't know anything until Friday's appt, or if my doc emails me the lab results beforehand. One of the trends I've seen among the IF blogs is this sense of waiting, of helplessness... of things left out of our hands. Whether it's the 2ww, or the first beta, the first u/s, to share news with family and friends, that next checkup... we're left trying to think of just about anything but. It's this constant level of anxiety, just hovering at the end of every thought, every sentence. Always hoping for the best and dreading something coming out of left field. I know POF is more than just IF issues. It's lifelong health issues, and I'm terrified they're going to find something else. Some complication. Something else I wasn't prepared for.

The last few weeks, the ball has been in my court. I've been researching, reading, blogging - giving myself some sense of control. Emotionally readying myself for the long journey ahead knowing that my POF Dx is pretty solid, just based on my initial numbers, always knowing that Dx part 2 was just around the corner. This morning, with a butterfly needle and a half-distracted lab tech who took a personal call while she drew my blood, the ball is out of my court.

So much for that Zen-like state from this weekend. I'm a basketcase already and I only just had my blood drawn 30 min ago... how on earth am I supposed to make it until Friday at 3pm? Waiting, waiting... to hear the inevitable in person.

At least my husband was with me this morning (he also needed blood work done), and he'll be with me on Friday. He really is my strength sometimes.

Questions for 4/24 appointment

My followup visit to my initial diagnosis is next Friday, 4/24. I'm having my FSH, LH, and estradiol retested on Tuesday. I'm assuming that since I haven't bled and it's been over 2 weeks since my progesterone challenge, my estradiol levels will continue to be low, my FSH high, and my LH just hanging out in mid-range levels.

I have been having minor panic attacks and just general anxiety over this appointment... the waiting is killing me, and yet, I know I'm just going to hear in person what I've already been told via email, and I'm sure emotionally, I'm going to feel like I did the day I first found out. Thankfully, I will have my husband there with me, and in a way, we've been kind of emotionally preparing ourselves for this, but it still doesn't make the waiting easier.

Since my Dx email, Dr. Gross has recommended that I compile a list of questions to email to him before the appointment. I've been researching like a fiend, and so far, here's the lists that I've come up with. I'm certainly open to suggestions that anyone might have.

Next Steps

1. Any speculation as to what may have caused this?
2. What is the likelihood that my high FSH could be the result of my unilateral ovariectomy combined with coming off hormonal birth control?
3. Should I be tested for any autoimmune disorders given POF and my hypothyroidism (Hashimoto's thyroidosis, Lupus, etc.)?
4. Barring any autoimmune disorders, what are the implications for my health with a diagnosis of POF combined with hypothyroidism?
5. Should my remaining ovary be monitored for any complications with any cysts, if present?
6. What are the next steps in terms of any further diagnostic testing? (FHS, LH, estradiol to be tested 4/21; Autoimmune disorders if suspected; Ultrasound on right ovary?)
   

Family Planning Concerns

1. Based on my numbers, is spontaneous ovulation a possibility?
2. Do my current hormone levels/hypothyroidism affect the consistency of cervical mucus?
3. Can I still rely on fertility awareness to monitor possible ovulation?
4. Is is possible for women with POF to sustain a pregnancy to term, whether naturally or through IVF (given that women with a high FSH have a greater risk of miscarraige?
5. How can I determine if anything is left in my ovarian reserve? Should I have Anti-Mullerian Hormone testing done? What does this entail? Timeline?
6. If there are eggs to be saved, can they be retrieved? Frozen? How long are they good for?'
7. Should my husband have semen analysis performed? When?
8. In terms of timeline for pursuing any artificial reproductive technology, what would you recommend?
   

General Health Concerns

1. Given that I was instructed to go off hormonal birth control, is hormone replacement therapy a realistic treatment option for me? Do the benefits outweigh the costs?
2. Cholesterol: I know this is exacerbated by hypothyroidism. Is the POF contributing at all as well? Will HRT help in treating cholesterol issues as well?
3. What kind of supplements would you recommend (calcium, vitamin D, anything to help with POF or boost fertility)? Are estrogen supplements safe/recommended given my history of migraine?
4. Minor menopausal symptoms: hot flashes, dizziness, insomnia, feeling unfocused/spacey; anything I can do to alleviate these symptoms? Anything major I should be on the lookout for?
5. Are my testosterone levels a concern? Should anything be done to lower these numbers?
   

Miscellaneous

1. Are there any clinical trials worth investigating? Thoughts on clinical trials/studies of POF in general?
2. Do you have any recommendations for infertility-sensitive mental health counseling?
3. Do you have any resources for local support groups?

Initial Blood Tests, 3/13/09

Now that we have some idea of how all these hormones are supposed to work, here's what mine look like, and how my doctor has come to the Dx of POF.

I had my blood labs completed on 3/13/09. Here's the rundown. (Normal ranges are in parentheses). I've included my thyroid workup b/c those numbers are important, but honestly, I don't feel like explaining hypothyroidism on this blog. So here's what Wikipedia has to say about hypothyroidism instead.

Thyroid Panel:

• TSH (Thyroid Stimulating Hormone) = 1.88 uIU/mL [0.34-5.60] Status: Normal
• Free T3 (Triiodothyronine) = 3.31 pg/mL [2.50-3.90] Status: Normal
• Free T4 (Thyroxine) = 0.92 ng/dL [0.54-1.24] Status: Normal

Reproductive Hormone Panel:

• Estradiol/E2 = 20 pg/dL [20-88 for post-menopausal women] Status: Low¹
  
• Progesterone = 0.14 ng/dL [0.08-0.78 for post-menopausal women] Status: Low²
• Testosterone = 42 ng/dL [10-75] Status: Normal³
• FSH = 57.7 mIU/mL [23-116.3 for post-menopausal women] Status: High⁴
• LH = 34.0 mIU/mL [8.7-76.3 for mid-cycle] Status: Normal
• DHEA Sulfate (androgen) = 233 mcg/dL [43-320] Status: Normal

Other Tests:

• Insulin = 22 uIU/mL [0-16] Status: High⁵
• Glucose = 83 mg/dL [70-105] Status: Normal
• Total Cholesterol = 197 mg/dL [less than 200] Status: Normal⁶
• Triglycerides = 219 mg/dL [48-150] Status: High⁷
• HDL = 44 mg/dL [23-95] Status: Normal⁸
• LDL = 109.2 mg/dL [75-130] Status: Normal⁹

What do all these numbers actually mean?

1. My ovaries are not producing enough estrogen on their own. This would account for my current amenorrhea. My levels are outside of non-pregnant females and in the post-menopausal female range.
   
2. Because I am not ovulating, I'm not producing enough progesterone. My levels are outside of non-pregnant females and in the post-menopausal female range.
3. Not terribly high, but high enough that it would explain my high sex drive. Arieh thinks it's funny that I have the hormones of a 16-year-old boy.
4. Because there's not enough estrogen in my system, my pituitary gland is overcompensating and is pumping out extra amounts of FSH. My LH is in a holding pattern as a result; b/c there's no estrogen surge, the LH is just chillin' out, waiting for hormonal signals.
5. Due to my thyroid, I am slightly insulin resistant. Thus, it's a general pain in the ass for me to lose weight. Also, I am at greater risk for developing diabetes, especially with familial history.
   
6. This is the first my cholesterol has been under 200 in over a year. I am just skating by in terms of normal levels.
7. Insulin resistance = increased levels of triglycerides. It all has to do with my decreased metabolism.
8. Ideally, my HDL should be over 60 (this is the "good" cholesterol).
9. Ideally, I need to decrease my LDL levels (this is the "bad" cholesterol).

Seeing my body's hormones in numbers really illustrates just how intricate the endocrine functions of the ovaries are to overall systemic health. I have followup blood work to be completed before my second appointment with my doctor in another couple of weeks.

Where do babies come from, anyway?

The ovaries are one amazing set of organs, I have learned in the few weeks following my Dx. Both reproductive and endocrine - you might call them the command center for the hormonal workings of the female body. Before you can understand anything about premature ovarian failure, you need to understand exactly how the female reproductive and endocrine systems work.

Short version
Uterus builds up endometrium (lining) in anticipation of release of egg. Ovary releases egg. If sperm is in wait, egg should fertilize. The fertilized egg travels down the fallopian tube to the uterus and implants in the endometrium. Cue: pregnancy. If there is no sperm to fertilize the egg, then the egg and endometrium are flushed out in that lovely process known as menstruation. And then the whole process starts over again.

For the visual learners

Image credit: Fertility Plus (http://www.fertilityplus.org/faq/hormonelevels.html)

A Hormonal Primer
Let's take a look at exactly what's happening hormonally during a woman's cycle. If you've ever wondered why some women might get a little "moody" during their cycle, well, we've got a LOT going on at once hormonally in our bodies :)

Follicular (Pre-Ovulatory) Phase
The pituitary gland begins releasing FSH (Follicle Stimulating Hormone). This primes the ovary to start maturing its follicles, the individual part of the ovary that releases the eggs. During this phase, several follicles actually develop at once, on both ovaries, but only one follicle will mature and release an egg in most normal circumstances. Estradiol (estrogen) is released by the ovaries during this time, and aids in the building of the endometrial lining of the uterus.

Ovulatory Phase
As estrogen levels peak, it triggers the release of LH (Lutenizing Hormone) by the pituitary gland. Of all the developing follicles, one will mature and burst, releasing the egg. It is currently unknown how the body determines which of these follicles on which ovary will release an egg. The ruptured follicle then becomes the corpus luteum (Latin for "yellow body"), and begins to release progesterone. Progesterone is a heat-releasing hormone, and causes a woman's BBT (Basal Body Temperature) to rise. It's also responsible for hot flashes. Progesterone is essential to ensuring implantation of the fertilized egg and to sustain pregnancy. If the egg is fertilized, it will take about 7-10 days to implant in the uterus. Once implanted, the fertilized egg will begin to release the hormone hGC (Human Chorionic Gonadotropin). This is the hormone that POAS HPTs (pee-on-a-stick home pregnancy tests) are designed to detect. The corpus luteum will continue to release progesterone, until the placenta develops and takes over progesterone production for the duration of the pregnancy.

Luteal Phase
If the egg is not fertilized, the corpus luteum will begin to disintergrate, and thus, decrease the amount of progesterone released. The drop in progesterone causes a second rise in estrogen, which then triggers the uterus to shed the endometrium, inducing a woman's menses. And then it starts all over again.

What does this all mean for me?
Well, my remaining ovary isn't working anymore for some presently unknown reason, so NONE of this is happening in my body right now.

Procedures & Treatment Timeline

Here's a nice bullet-pointed summary of various procedures and whatnot. More detailed narrative can be found on my backstory post, but here's the quick & dirty version:

• July 1997: Ari and I start dating in high school. We're 15. We break up 2 years later.
• Sep. 2000: Ari and I start freshmen year of college. We get back together.
• Nov. 2000: Left ovary removed for torsioned cyst. Ouch!
• Dec. 2000: Dx'd with hypothyroidism. Go on thyroid hormone replacement meds.
• Aug. 2004: We graduate college and move below the Mason-Dixon line. I work full time, Ari goes to grad school.
• Apr. 2006: We get engaged.
• Mar. 2007: Ari lands a job in New England. We schedule to move the weekend of my 25th birthday in May.
• May - Nov. 2007: Period suddenly stops, despite being on birth control for 7 years. My PCP thinks it's "stress" from the move and prescribes birth control with higher dose of estrogen. Period comes back the next month. This should have been my warning sign.
• Jan. 2008: Married! Oh happy day. Honeymoon in Disney World & a short Disney cruise.
• Sep. 2008: Hospitalized for "the incident." We thought it was a stroke; unofficially, my docs say it was a migraine. Officially, they called it "dizziness."
• Nov. 2008: Pregnancy "scare" when I forget to get my birth control refilled. Took Plan B just to be safe. Oh how wrong we were.
• Dec. 2008: Ordered off birth control for migraine/stroke contraindication. Begin practicing Fertility Awareness Method & using backup methods. Last period was on Christmas Eve.
• Jan. 2009: The Paper Anniversary. Trip to California- amazing. No period yet. Chalk it up to traveling stress.
• Mar. 2009: Still no sign of period. PCP again thinks it's "stress" and b/c I have "residual estrogen stored in my abundance of fat cells." Told me to drop weight and it would come back. She's a real pleasant bitch like that. Go see another doc (RE/OBGYN) in my practice for a second opinion who orders a full RE workup. The bombshell: Premature Ovarian Failure at age 26. Estrogen is low at 20, progesterone is low at 0.14 and FSH way high 57- all classic indicators of POF. TSH is normal at 1.88.
• Apr. 2009: Karyotype negative for Fragile X (thank God). Anti-thyroid antibodies out of control at over 1000. My body is practically eating my thyroid.
• May 2009: Happy 27th Birthday to me. TSH = 0.06. Dx with Hashimoto's. Lowered Levoxyl to 75mcg. Told donor egg/adoption are only options, but we can try 6 months of birth control as anecdotal "experiment" to stim my ovary.
• Jun. 2009: Ultrasound reveals uterus and remaining ovary look normal and healthy. Should have no problems physically carring a pregnancy. Score!
• Jul. 2009: Ari has semen analysis performed. Results are low end of normal, particularly motility- but they're normal. My TSH is through the roof (5.69) so Levoxyl upped to 88mcg. Waiting 6-8 weeks to recheck levels, then figuring out what to do next.
• Aug. 2009: TSH has crept down substantially (2.93). Holding pattern on dosage. Do that 6-8 week waiting game and then b/w to see how it's progressed.
• Sept. 2009: TSH has shot back up to 4.7. (Hashi's is fun like that.) Dosage upped to 100mcg. Retest in 6 weeks.
• Oct. 2009: 2 absolutely incredible weeks in Japan.
• Nov. 2009: The yo-yo continues: TSH is down to 2.74. We're skipping the next dose up and heading straight for 125mcg. You know the drill by now: wait 6 weeks, test, review.
• Dec. 2009: TSH down drastically to 0.024. Switched to Synthroid, upped to 137mcg. Doc wants me back in a month. Also testing my cholesterol, anti-thyroid antibodies, folic acid, vitamin D, and a host of other things. I panic at the major dosage increase, and insist on staying at 125mcg.
• Jan. 2010: My dosage gamble pays off: TSH is now at 1.05, and from a thyroid perspective, I feel great. Weirdly feel like my period is about to come back- lots of PMS symptoms, and a ton of pain around my right ovary. All smoke, no fire, aka, no period. Doc orders an u/s and of course, more b/w. My estradiol is a pinch elevated, but not statistically significant.
• Feb. 2010: First u/s reveals... a tiny follie! No egg visible. Bloodwork: nothing special. Second u/s 10 days later reveals... that same follie, an incredibly thin lining and what appears to be the remnants of a random benign cyst.
• Mar. 2010: Time to start HRT, which, ironically enough, is the birth control pill. Yet, it will do nothing to prevent birth; in fact, if I wanted, I could possibly use it to jumpstart my reproductive system again. Chances are anecdotal, at best, but it's still a shot. Start taking generic birth control pills. Mood swings and sore boobs abound.
• Jun. 2010: Thyroid levels are normal for the first time in a year (TSH = 1.0). Birth control pill as HRT is working fine. Feeling the best I have in years, despite a newly diagnosed arthritis issue in my back.