Feeling renewed

Sorry I've been a bit remiss in posting this week... I've been so caught up in #IranElection I pretty much forgot I had a blog.

Camping was incredible. Fort Z. braved the rainstorm Saturday night, despite very heavy rains for about 10 hours. Saturday day, the weather was gorgeous. Also, our campfire spaghetti dinner on Friday was delicious. Added bonus: I packed two tealights and we celebrated Shabbos in the woods. It was deeply calming and recharging. Friends joined us on Saturday, and we had a ton of fun swimming in the lake (my first time in a lake, ever), playing Apples to Apples, and making s'mores. And then Sunday, I went to a friend's book club she had arranged. It was great to spend the afternoon surrounded by intellectual women.

My birthday massage (rescheduled twice due to life) was amazing. Hot tub soak, hour long deep tissue/Swedish massage... what a wonderful gift from my husband. So wonderful, that we're going back tomorrow for a private hot-tub soak together!

No real updates on the IF front. My next appt is July 10; I'll need to have some b/w done to check out my thyroid levels beforehand, and I might call my Dr. to see if he can order a semen analysis before that appt as well. Recently, I've actually been in a very good place, emotionally; I think I had one random crying jag late last week, but otherwise I've been ok. The cold & cough I had been fighting from last month is finally gone, so I have a ton of energy back. Also, my new Levoxyl dose seems to be working wonders- a lot of energy back.

New blog widgets! My Inspire.com badge to the left. I just stumbled on these boards and found a wealth of new support, as well as a lot of fellow POF-ers. The RESOLVE board seems to be more active than the Inspire IF board, but both are chock full of regular posters. I like finding new support networks.

Also, if you click on the any blog post title, there's a Tweet This button at the bottom of the post. Feel free to tweet me into the tweet-o-sphere.

You may have noticed my weight ticker on the right. That's right, I'm on a diet. Ari and I are doing Weight Watchers together. We did it last summer and both lost a good amount of weight... and then the last 5 months of craptitude happened and we put a lot (and then some) back on. If I'm going to have kids, and if I want to be a successful candidate for IVF, I need to lose some serious weight. So I'm starting with my first goal: 5% of my current weight so far. Baby steps. I've almost made it through my first week, and I've been a little grouchy. That's probably b/c I also stopped consuming caffeine, entirely, 5 days ago.

Why the caffeine cut? Well, I drank WAY too much soda before the diet (no soda, not even diet, for 5 days now). And the soda eats away at the calcium in your bones, and since POF messes with your bone density, I really needed to wean myself off. I really need to think of soda as the occasional treat as opposed to daily staple. The first 2 days, I had a bad headache, and was walking around like a junkie looking to score. Now I'm more of in that calm, Zen-like acceptance, although I've been craving oolong tea really badly. I'll see how many days I can go w/o caffeine, period. My goal is to start at a week, and go from there. I've already noticed a huge difference: I sleep like the dead at night, hot flashes have decreased significantly, and that general sense of anxiety doesn't feel like it's looming over my shoulder every 10 minutes.

So that's life right now. Not thinking too much about babies, or my inability to have them. And it's a nice feeling, for a change.

Quick Updates: Mom is A-OK

Thank GOD.

Medical stress test and cardio catheters revealed no blockages. Elevated cardiac enzymes may not actually have indicated a heart attack, but rather a result of her crazy high blood pressure (240/180) on Thursday morning. She has to meet with the hospital's endo before she can be released, but it looks like she should be out late afternoon/early evening today. I think our whole family was pretty spooked by everything that's happened the last few days, but my Mom seems to be doing well. Just waiting for the final OK from the dr's so she can be released.

Thanks again for all the thoughts and well wishes.

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On the IF front: not much new here. I've started my 75mcg dose of Levoxyl... not sure how that's working out for me yet. I've been getting over a cold, and with my Mom in the hopsital, I was super stressed, so I've felt extra tired than normal. I finally feel like I'm 99% over my cold, so that's a relief.

Trying to light the fire under my ass to get in shape, lose weight, and get generally healthy so when and if a baby happens in the next year, I'm not huffing and puffing a la Fatty McGee.

My current hw assignment from Ari? Find a physical activity I can do 3-4 times a week that I enjoy. I started by walking my school's track with a friend last night. The conversation and movement really helped my mood, so I'm hoping to stick with that.

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On the everything else front: Ari is still looking for a job, has a good lead about 2.5 hours away from where we are now... thankfully, it's mostly telecommute. So, fingers crossed on how that goes.

We're going camping this weekend- first camping of the season! It'll be nice to dust off the old Fort. (We call it a fort b/c it's a HUGE 4-person tent... for just the two of us. It has its own vestibule. It's a lil ridiculous, but we love it.)

I treated myself to a purchase of the full-size Bath and Body Works Japanese Cherry Blossom bath gel. I used it last night, and it smells divine. I think I will use the birthday money I got from my Mom last month to treat myself to some new pants.

I need to reschedule the birthday massage that Ari got me, since I went to NJ this weekend. I'm thinking maybe one night this week after work... we'll see.

Choose Your Own Adventure

If you want to try to have your own genetic child, turn to page 6.
If you want to recruit a donor for donor eggs, turn to page 12.
If you want to adopt a child, turn to page 30.
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I've been mulling over how to write this entry since Friday's doctor's appointment, and this title seemed to be the most fitting. I won't try to spin this post with emotion one way or the other, but rather lay everything out as it's been laid out to us.

I've been diagnosed officially with Hashimoto's thyroiditis. My Premature Ovarian Failure is likely not reversible. There is anecdotal evidence (read: less than 1%) to suggest I may conceive naturally using hormonal birth control (HBC) to suppress gonadotropin receptor antibodies long enough to jumpstart my ovary into producing its own eggs. (My FIL compared it to giving a car a jump whereas I compared it to licking a 9-volt battery). Dr. Gross is doubtful, based on my numbers, that I have any follicles left to create eggs at this point, but HBC is low-cost and least-invasive enough to warrant giving it a try. Clomid wouldn't work- it would be like putting Rogaine on a scalp that has no hair follicles left. You can't grow hair where there aren't follicles; the same can be said of eggs.

Next steps:

1. Thyroid dosage adjustment. Going from 88mcg to 77mcg. My current dosage/brand are quite potent and have thrown me into the hyperthyroid range blood test result-wise, but symptomatically, I'm still presenting severe hypothyroidic. This is because the Levoxyl, which is synthetic T4, is not being converted into enough free-T3 in my body. So on paper, I look like I'm hyperthyroid, when in fact, it's the reverse. This is apparently fairly common with Hashi's.
2. Pelvic/uterine ultrasound. Scheduled for Thursday; just want to make sure that my remaining ovary looks normal, and there are no uterine abnormalities.
3. Semen analysis. We need to make sure everything is a go on Arieh's end.
4. Wait 6 weeks and retest thyroid levels. There is a chance I may need to top off my meds with some T3 in addition to the Levoxyl (T4). Then begin...
5. Birth control treatment. Oddly enough, I would use birth control as a way to jumpstart my ovary into releasing it's own eggs. 6 months on starting July/August, stop, and wait to see what happens. In essence, we would begin TTC early 2010, a full year and a half earlier than we had planned on, but it's essentially our last shot to have children genetically related to me.

If step 5 fails (it's pretty likely given that again, we're looking at less than 1% odds to begin with,) then as Dr. Gross said: "Really, your only options for family building are the use of donor eggs or adoption." When Arieh asked as I blinked through tears: "Really, there's really no chance?" and Dr. Gross point blank told us "No," it hit us both like a bag of bricks to the face. I mean, we knew it- we knew that these options were highly likely, but to hear it in person and confirmed by my doctor was pretty jarring.

So, right now, we're just trying to remain positive and hopeful for that longshot chance in January/February 2010. I have a lot of work to do to get myself in shape. It feels strangely calming to be in a place where I finally know my options solidly and have a rough gameplan in place. Yet, the prospects for the future are still daunting.

This just really... sucks. It really does. We're both sad, relieved, tired, and overwhelmed. So there it all is, laid out like a Choose Your Own Adventure novel. If only picking a page was so simple.

Edited to add: Thanks to whoever mentioned this over at the LFCA! The support has meant so much and has really brightened my day! :)

Holy "cum hoc ergo propter hoc," Batman!

Allow me to diverge into a moment of logic, Cum hoc ergo propter hoc. Here's what Mr. & Mrs. Wikipedia have to say:

The cum hoc ergo propter hoc logical fallacy can be expressed as follows:

• A occurs in correlation with B.
• Therefore, A causes B.

In this type of logical fallacy, one makes a premature conclusion about causality after observing only a correlation between two or more factors. Generally, if one factor (A) is observed to only be correlated with another factor (B), it is sometimes taken for granted that A is causing B even when no evidence supports this. This is a logical fallacy because there are at least four other possibilities:

1. B may be the cause of A
2. some unknown third factor C is actually the cause of both A and B
3. the "relationship" is coincidence or so complex or indirect that it is more effectively called coincidence (i.e. two events occurring at the same time that have no direct relationship to each other besides the fact that they are occurring at the same time).
4. B may be the cause of A at the same time as A is the cause of B (contradicting that the only relationship between A and B is that A causes B). This describes a self-reinforcing system.

In other words, there can be no conclusion made regarding the existence or the direction of a cause and effect relationship only from the fact that A and B are correlated. Determining whether there is an actual cause and effect relationship requires further investigation, even when the relationship between A and B is statistically significant, a large effect size is observed, or a large part of the variance is explained.

Right.

So, in putting on my Dr. Google hat today, I discovered that Hashimoto's thyroiditis (A) can not only cause POF (B):
"One other cause of infertility in patients with thyroid disease is the uncommon condition of primary ovary failure"

...but POF (B) can cause Hashi's (A):
"Infertility is the result of this condition [POF], and is the most discussed problem resulting from it, but there are additional health implications of the problem... There is also an increased risk of heart disease, hypothyroidism in the form of Hashimoto's thyroiditis..."

*facepalm*

So, my high ATA count and negative Fragile X results are good, but that doesn't mean I can have my own genetic children yet. B/c, and I suddenly realized today, I could have a totally busted ovary regardless. We could be past the point of no return in terms of my own eggs. My guess is that my doc is going to recommend (hooray!) more blood tests on Friday.

Questions for 5/29 Appointment

I'm scheduled to meet with Dr. Gross this Friday at 3pm. Giving my recent blood test results of positive for ATA and negative for Fragile X, I have a good handful of questions. Am I missing anything?

Re: blood results:

1. Do my ATA numbers indicate Hashimoto's or Graves?
2. Are my low TSH numbers a result of the high ATA count?
3. ETA: do ATA indicate I have anti-ovarian antibodies?
   

Thyroid issues:

1. Should I see an endo? Referrals/recs?
2. With such high ATA, is it worth investigating meds like Armour for both T3 and T4 replacement?
3. Lifestyle changes recommended?
4. Natural/alternative treatment therapies, or therapies to use in conjunction with standard medicine?

Impact on fertility:

1. If this is mostly thyroid related, is the POF, in effect, reversible?
2. Timeline for TTC - should we adjust our family planning timeline in light of the cause? Will waiting make it more difficult, or should we make attempts sooner rather than later? (2 months vs. 2 years)
3. Does thyroid disease carry a higher risk of miscarriage? What can be done to prevent this?

Reproductive hormone deficiencies:

1. What can I do to alleviate menopausal symptoms?
2. Should I begin HRT? What do you recommend? Risks? Benefits?
3. Are there any supplements I can take in addition to or in place of HRT?
4. Should I increase/decrease the soy in my diet?

Getting a second opinion?

Before I write posts, I usually like to tag it with labels first; keeps me on topic. I realized, in tagging this, I added "faith" at the last minute... I think I added it more for secular than religious purposes.

All of my major bloodwork is in. I'm sure I will have thyroid and hormone workups done again in another month or so (esp. thyroid, since I somehow went from managed hypothyroid to crazy high overmanaged hyperthyroid in about 6 weeks). I have my meeting with Dr. Gross next Friday; I have a bunch of questions to ask him. Arieh will be there with me again like last time; I feel much stronger with him there and it's good to have a second set of eyes and ears that represents our interests as a couple.

He's currently out of town at a conference, doing some serious networking, as he was laid off the week after I was diagnosed. During his usual evening call-in last night, he suggested that since I have all of my bloodwork done, perhaps I should get a second opinion. Not that he thinks Dr. Gross is wrong, or lying to us, but that it can't hurt to have someone else look everything over. Just to make sure, yanno?

I'm conflicted b/c my doc is pretty top notch, but I can see my husband's reasoning. We try to be thorough people, so a second opinion totally makes sense. He argues: it can't hurt. I argue: it can. After months of uncertainty, even before my Dx and now especially since in trying to find answers as to its causes, getting my autoimmune disorder and Fragile X results back has felt like such a huge weight has been lifted. The clouds have parted, answers I don't totally understand yet have been laid out and illuminated by the sun.

To get a second opinion doesn't necessarily undo all of this, but it casts me back in the dark, throws me back to the beginning- I'm left in the state of the unknowing, anxiously awaiting to either a) hear the same thing; b) hear something different or worse; or c) find out this was all a mistake and I'm just fine. And none of those options seem particularly appealing any you slice it, even the last one (b/c I know stuff isn't fine- I haven't had a period since Christmas).

For those of you out there that have gone through crazy diagnoses or had suggestions for courses of treatment that left you scratching your head: did you seek a second opinion? How did you navigate that with your partner and first doctor?

Blood lab results, round 2: finally, some good news!

Dr. Gross emailed me today. The karyotype serum test results are back: negative for Fragile X and the rest of the karyotype looks normal!

After a very long, frustrating day at work, combined with some other shitty news I got at lunch about some other financial related things, this news has been a welcome relief. This means there is an infinitesimally small chance I can still have my own genetic children! I can hardly believe it right now. I have a lot of work to do- I've got a ton of weight to lose and some other things to get in check, namely my thyroid disease; but there's a chance that my one remaining ovary just might have some eggs left in her, and we might be able to coax them out when we we're ready to TTC. I think there are still going to be issues in that we won't be able to make a baby the old fashioned way, but I've pretty much accepted that fact.

The news that I might be able to have a child that is partly genetically mine is so... fantastic. It's overwhelming. I have hope again. I haven't felt anything, really, for weeks and now - something positive.

We have an enormously long way to go, but at least we've got this small hope that I might have eggs left.

A quick hello

I haven't posted in a couple of weeks, other than that random thing on the T last weekend. Still no word on the karyotyping. As for the thyroid issue, I'm to stay on the same course. Instead of taking my thyroid med every day, Dr. Gross wants me to skip my Sunday dose.

Check.

Hot flashes and palpitations abound. Sex drive... it's there. Nothing over the top, but here and there mostly. Baby lust? Non-existent. Preggo-envy? Not really. I'm just kind of floating in a sea of "meh."

Haven't slept well this week for a variety of reasons, but none of them really related to stress. I'm just here. I had a couple of sad nights this week, which were quickly dispelled with things like Battlestar, LOST, and a night at the Boston Pops last night. I distract easily, so that's helped. I have zero desire to go shopping for my friend's shower gift(s). I've actually asked A. to do that shopping for me. I'm happy to wrap a gift and pick out a card, but I just don't feel like staring at a printed registry in zero point font to roam confusing aisles at Babies R Us.

Actually, I'm at a point where I don't really know what I should be feeling at all.

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?

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.

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.