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Breakthrough! + Self-Advocacy

Posted on March 30, 2011 00:06 by dlovejoy

Having dealt with psoriasis, plus hormone and fatigue issues over time, I've long known that doctors aren't necessarily going to a) listen and observe adequately; b) conduct thorough testing by default; c) properly diagnose and/or treat your problem. I tend to view doctors as expert reference material, jumping-off points to greater self-discovery and health. Can't live with 'em, can't live without 'em!

Though I've had several really positive experiences with health practitioners, I've had far more that were misleading, unsatisfying, or downright upsetting.

For example, our fertility process:

Last fall (2010), I had my sixth miscarriage in a row. Clearly, something was off-balance, and we hadn't found it yet. Testing so far showed perfect anatomy, overall health, etc. Dr. Biter supposedly did a hormone panel to measure my levels, but later we discovered through another doctor that the test was meaningless and unreadable.

The day after a miscarriage (when I was once again heartbroken, amped up on the hormone rollercoaster of early pregnancy, and dying to have a successful pregnancy) Dr. Biter sold us on an IUI - where they pump up ovulation with hormones, and then isolate active sperm and inject them directly into the uterus. This is a fairly common procedure used to increase chances of getting a woman pregnant. Greg was skeptical; why would we do this, if we were having no trouble getting pregnant? We needed to look at why I was miscarrying!

I was a bit skeptical too, but Dr. Biter explained it such that it sounded like a good idea: We'd bypass any potential sperm count issues (he suspected that might be a problem), and increase chances of fertilization with some extra eggs. In my hormone-crazed haze, and desperately missing the baby I'd just lost, I said, Where do I sign up?

Two IUIs, two more miscarriages, and four months later, I was still heartbroken and frustrated, and on top of it, WIPED OUT. My energy wasn't bouncing back; it wasn't even crawling back. By late February, I had to cut back on work. Maybe focused resting would help me recover.

Meanwhile, we had sought out Dr. Kettel, a reknowned fertility specialist. We liked his approach right away. He addressed "Why the repeated miscarriages?", explaining his reasoning clearly. I had a pint of blood drawn, and we tested a bunch more things - 9 things that Dr. Biter had never even mentioned.

...And we realized, Dr. Biter should've referred us to a specialist, NOT sold us on IUIs. He did refer Greg to a male fertility specialist, who poked and prodded Greg and found nothing wrong. But...we were conceiving. A sperm count issue would mean difficulty conceiving, not gestating.

Lo and behold, Dr. Kettel's tests turned up...nothing. He recommended that we either try again with some extra progesterone (to build up the uterus) and baby aspirin (just in case there was a blood-clotting issue, event though those tests were negative); or drop $20K on IVF wtih PGD (genetic testing of the embryo).

$20K? And what if I miscarried again? No guarantees, no money back - sorry.

I didn't buy it.

While my brain was foggy from exhaustion, the baby-crazed hormone effect was clearing, and I began to think, reflect, meditate, listen to myself more. I sat for periods of time and just felt what I was feeling. I slept, a lot. I researched. I talked to people. I found support groups. I wrote. I noticed that my basal body temperatures remained low, off-the-charts low. My blood pressure was so low I almost passed out every time I stood up. My intuition insisted that the fatigue and miscarriages were for a reason. I would find it. The more I read and listened and thought about my whole health history, the more I thought low progesterone could play a role. That can cause miscarriage, exhaustion, and several other unpleasant, PMS-like side effects. --Not to mention that I've lost the outer third of my eyebrows.

But Dr. Kettel apparently had not even tested my progesterone level, because "He didn't think that was the problem, and progesterone blood tests weren't very accurate anyway." OK, I would find someone who would.

Possibly, my miscarriages really were "unexplained," and if we tried enough times, we might hit the jackpot...or we could eventually turn to adoption. --But eight miscarriages in a row? Pregnancy at the drop of a hat? I at least wanted to test for everything, before I accepted this non-explanation.

The acupuncturist I was working with already agreed that low progesterone would explain a lot of my symptoms; and that the Follastim, Pregnyl, and high doses of Prometrium (hormones) from the IUIs could have caused a rebound-like hormone crash in my body.

I went to two female M.D.'s who specialized in women's hormones: Dr. Rubin and Dr. Marshall. Another pint of blood, another week of extreme-crash exhaustion. But Dr. Marshall also ordered a saliva test for more detailed hormone levels, and looked at balance throughout the endocrine system and brain neurotransmitters; plus for some rare genetic conditions.

Today I got the bulk of the results. I wasn't surprised to find that both doctor's tests showed VERY low progesterone levels. My progesterone could've been slightly low before, but since the IUIs it was well below sea level - not even on the chart. 

The surprising result was that I also have a combination of two genetic markers (MTHFR and C677T). Having one isn't a problem, but having both means you don't methylate and absorb folic acid properly. BIG PROBLEM with pregnancy! Folic acid enables a fetus to develop genetically correctly. Not enough can mean brain development problems; very little to none means unviable fetus => miscarriage.

(Incidentally, Dr. Marshall also found that I was too high on vitamin D, which could be related to my narrow-band UV light treatments for psoriasis...and that my blood pressure and cholesterol levels are actually TOO LOW. --And I've been eating almost-illegal amounts of salt and egg yolks already!)

Holy cow! So all I need to do is take the correct form and dosage of progesterone, and a prescription form of methylated folic acid?

As always, there are no guarantees in anything, but I have a new sense of excitement, having some solid data and something new and simple to try.

...And Greg and I are deeply disturbed about the wayward path Dr. Biter led us on (which led to more miscarriages and pain); and the fact that no-one even thought to test these things until I requested it and made it happen. (Needless to say, making anything happen is exponentially harder when you have the energy level of a rock.) Are we wrong to want our money back from the IUIs, or at least some kind of closure with Dr. Biter, where we let him know just how wayward and trying this path has been for us?

So I start the new supplements tomorrow. Maybe, just maybe, I'll start feeling better! Greg hopes so too...