You are currently browsing the tag archive for the ‘congenital adrenal hyperplasia’ tag.

Like this at Facebook!Share on Facebook
Dan and I got back from vacation in San Francisco on Saturday. In addition to the amazing photographs, delicious food (Humphry Slocombe ice cream = nommm), scenic landscapes and unforgettable wine (Gundlach Bundschu = mmm), the trip also delivered serious peace of mind. One reason: I went to the Owning Pink Center as a patient of Dr. Lissa Rankin’s, who you may also know as the author of the book that comes out today (and which you should own ASAP!) What’s Up Down There? Questions You’d Only Ask Your Gynecologist If She Was Your Best Friend (St. Martin’s). See, the thing is, she actually is my very good friend. That’s just one reason why I wanted her to also be my doctor, because last month, I realized that I’ve been grappling with hormone-related symptoms for far too long…

Rewind to two days after my 27th birthday. My regular OB/GYN—who had ben a piece of cake to deal with when I was on the dreaded Pill—began to strike me as standoff-ish. Her in-and-out in 5 minutes flat attitude wasn’t going to cut it. I decided that I needed to sit down with someone wise, compassionate and interested in treating me holistically—as a whole person, not just a handful of acute symptoms. Enter Lissa.

This is one doctor who doesn’t wear a white coat and stand and preach while you sit and listen. On Thursday, Lissa wore a purple dress while we sat in her cozy office’s plush chairs and discussed my sex life, my stress level, my blood work and my fertility. It’s definitely easier to open up about all of these topics when your doctor is your friend. But even if she isn’t, you’d probably feel immediately at ease simply because her office is a warm, welcoming place.

We weren’t more than 20 minutes into our session—Lissa devotes an hour to each patient—when she looked at my labs that I had done in March with my NJ endocrinologist. “Wow, your TSH level!”

I said, “Wait, what?”

In the moment, I was so focused on Nonclassical Congenital Adrenal Hyperplasia as the epicenter of all of my ailments that I couldn’t remember what TSH was. Lissa explained that it’s Thyroid-Stimulating Hormone, which the pituitary gland overproduces when the thyroid is sluggish in producing thyroxine, a metabolism-stimulating hormone. And while my levels are in the realm of what clinicians consider “normal,” Lissa noted that most people at my level tend to not feel very well.

Fatigue = not OK. (Image via obo-bobolina/Flickr)

Then, she asked me some follow-ups… How is my quality of sleep? I heard myself say, “Bad.” (Whoa, I thought to myself! I never really said that out loud before, but I guess my sleep isn’t really what I want it to be… I want to be able to fall asleep and stay asleep better. I told her this.) How is my skin? Combo/itchy sometimes, too. How is my energy level? Poor. I never met a nap I didn’t want to take. Just about any time of the day. I’m especially tired around 3 p.m. daily. And by the time I get home from work, I just want to throw myself on the couch. I’ve always chalked that up to stress, sitting all day at work, the wrong or nonexistent snacks perhaps. But, no, it’s more than that. Do I wake up feeling energized? Rarely. Have I had a ridiculously hard time trying to lose a small amount of weight? YES! Does anyone in my family have a history of thyroid problems? (It can be genetic.) Yes, yes, YES. My Grandma E, who I am pretty sure I take after biologically, was diagnosed with hypothyroidism at…get this…age 27!

Soon, Lissa concluded that yep, I’m symptomatic of hypothyroidism, or a sluggish, underactive thyroid. Treatment could get the gland chugging like it should, in turn, bolstering my energy. Not to mention the other symptoms… The thyroid and metabolism influence so many other body processes. In fact, hypothyroidism can prevent effective weight loss, cause weight gain, cause thinning of the hair, increased sensitivity to cold, muscle aches, dry skin, etc. I’d been wondering why I had been dealing with various symptoms – I had been wishing and hoping for answers. But none came, until I saw Lissa as a patient.

I read later that many people with thyroid problems don’t have any stand-out symptoms other than feeling “off” overall. So why isn’t it something that most doctors regularly look at or take into consideration more frequently? Why do numbers on lab work have to be astronomically high or deliriously low for them to do anything for us? Lissa explained that “normal” hormone levels are based on a given healthy population; most docs won’t treat you unless you’re in the lower 5th percentile or upper 95th percentile. But she’s found that patients may not feel very well when they’re on one side of the extreme (say, 60th-90th percentile). And they do fantastically with treatment.

Image via Son of Groucho/Flickr

I’m the opposite of Rx happy, but when Lissa suggested treating me with bioidentical (meaning the body can actually recognize the drug as identical to what the body produces) thyroid hormones, I could have shouted, “Sign me up!” It was like she found a missing puzzle piece, and I was stepping back to look at the completed masterpiece…

…Well, not quite. There’s still the NCAH, which I plan to work on with Lissa’s naturopath/partner, Lisa Brent, N.D. And other puzzle pieces that are floating out there. But I am confident now that I’ll find them, and that I have the support I need now to feel fully vital.

I’ve said it before, but I feel more strongly than ever now that we all deserve doctors who will will treat us as whole people, not just numbers on a chart. We deserve to be heard and to have our concerns validated. We deserve doctors who will look out for us as if they were our best friend. If that doesn’t describe your doctor, and you have concerns about any aspect of well-being … I strongly encourage you not to settle and to keep searching until you find the right doctor. She or he may help you find answers to questions that you didn’t know you’ve been asking all along.

Advertisements

Like this at Facebook!Share on Facebook

On Monday night, I watched supertrainer Jackie Warner‘s new Bravo TV show Thintervention. One thing that particularly resonated with me was the situation of 23 year-old client Stacy. She could be me. I kind of was her. Like Stacy, I would chalk up my problematic relationship with food to being Jewish. Like Stacy, I would smirk and think to myself, “Wow, I’m the Queen of Camouflaging my chub!” And like Stacy, I have a hormonal issue that makes it easier for me to gain weight and harder for me to lose.

Jackie scolds Stacy on Bravo's 'Thintervention' (photo via Bravotv.com)

In the first episode of Thintervention, Stacy discusses one of her major health setbacks with the doc on (casting) call. He says, “You have PCOS, which can make you put on weight… But you can’t let it be an excuse.” For those of you who aren’t familiar, PCOS is Polycystic Ovarian Syndrome, an endocrine disorder caused by lifestyle and/or genetic factors and typically marked by resistance to insulin (a hormone that governs carbohydrate metabolism). Interestingly, 1 in 27 Ashkenazi Jews (myself included) have an adrenal disorder called Non-Classical Adrenal Hyperplasia, which mimics PCOS. I’d be interested to see if Stacy has been tested for NCAH, since she, like me, is a young Jewish woman.

Either way, PCOS affects as many as 30% of women total. And it clearly has a detrimental effect on weight. From what I can gather from the doctors I’ve seen and the info I’ve read on my own, research on the matter right now is kind of a chicken or the egg situation. Do lifestyle factors make you gain weight and in turn, worsen symptoms of PCOS (or NCAH)? Or does living with these conditions cause you to not as effectively store/burn calories? Based on my own struggles, I tend to think it’s more of the latter.

That’s not to say that women who suffer from either problem can’t lose and keep off excess weight. It’s just incredibly difficult. There are a couple of nutritionists who advocate a low GI diet, which is pretty much just a high fiber/low-fat/lower-carb and limited sugar diet. And some experts recommend women with PCOS work out for at least an hour a day, at least 5x a week. Sure, if you’re being trained by Jackie Warner on a Bravo reality TV show, that time commitment is nothing. But for most mere mortals, that’s a serious chunk of time.

I’m just saying I feel like there’s really not much research and health information/guidance out there for women living with PCOS and especially those with NCAH. Especially when it comes to weight management. And that’s definitely frustrating.

But it was great to see someone on TV come out as dealing with it in her effort to shed pounds, and I can only hope that might drive some awareness about the problem. That way, hopefully more women start asking questions and getting answers about how they can follow a weight-loss program that fits their specific health needs—instead of being told they should just suck it up and struggle to succeed on a One Size Fits All plan.

What do you think?

I just read something on Jezebel that blew my mind.

Pediatric endocrinologist Maria New—of the Mount Sinai School of Medicine and Florida International University—thinks that she can prevent lesbianism by treating pregnant women with an experimental hormone, a steroid called dexamethasone. She claims that certain prenatal hormonal combinations (in particular, those associated with a condition called congenital adrenal hyperplasia) may lead to the birth of little girls with ambiguous genitalia. OK, that seems fair. But the news here is that she says CAH can result in little girls who exhibit an “abnormal” disinterest in babies, don’t want to play with girls’ toys or become mothers, and whose “career preferences” are deemed too “masculine.” Should Mommy and Daddy want to ensure that their little girl prefers to play only with Barbies and crush on Kens, then New advocates prenatal treatment of “dex.”

Boys (left) vs. girls (right) - Take a drug to make sure it stays that way, says Dr. New!

Not only is this completely insane, offensive and disturbing on its own, but I’ve personally seen this doctor.

In late 2006, I got fed up with having to get threaded so frequently. So, I visited an Upper East Side spa for a laser hair removal consult, and the owner suggested I see an endocrinologist to rule out any hormonal issues that might make the treatment less effective. I ended up being referred by my OB/GYN to Dr. Maria New’s office. One of her assistants saw me, drew up a quickie family health history and ran some tests… Turns out, I have a genetic hormonal imbalance referred to as nonclassical adrenal hyperplasia, or NCAH. The symptoms are similar to polycystic ovarian syndrome (PCOS), and it affects 1 in 27 Ashkenazi Jews. 1 in 3 are carriers. In my case, the only truly noticeable symptoms have been wonky periods/cycles and having to pluck, thread or shave a bit more often than I’d like. Nothing that serious in the scheme of things, really.

As soon as they confirmed my diagnosis, New’s staff was on me to start taking “dex.” But as soon as I heard the word ‘steroid,’ I thought ‘weight gain.’ And then I thought, maybe I should look up the other symptoms.

-“Dex” can suppress your immune system. It can raise your risk of getting an infection or of reactivating an old infection.

-“Dex” can lead to swelling in the face, hands, or feet. Fluid may also collect in the abdomen, which could make you feel bloated.

-“Dex” can irritate your stomach. When used for extended periods it may increase the risk of ulcers or bleeding in the digestive tract.

This was more than enough to have me say, “No, thanks” to filling a Rx for the drug. I’d find natural methods to deal with my minor symptoms. But, but, but! They kept warning me that should I decide to have a child with a man who is also a carrier of the gene, our kid could end up with CAH and potentially ambiguous genitalia. So when the time came, I’d have to be treated with dex throughout my pregnancy—at least until we knew whether the baby was a boy or a girl. (If it’s a girl, their advice is to stay on the drug until the birth.)

Since getting into holistic medicine and deciding that the Pill wasn’t for me, I’ve become more and more skeptical of this Rx. I’m not saying my diagnosis is wrong…even though Dr. New is now coming off as a total whack job. The fact is, my latest blood work does point to a—very low-level—diagnosis of NCAH. And I’ll have to do some research on what will be the best preventative treatment for the well-being of my one-day baby. But especially knowing what I now know about the questionable safety of dex, I am 99% sure I will say, “Hell no” to prenatal use of the steroid.

But that’s my own personal medical challenge. Scarier by far is that Dr. New thinks that women not even diagnosed as CAH carriers, should consider taking dex prenatally to prevent homosexuality or “male behaviors” in little girls.

I'd rather not imagine a world without The L Word! (Photo via Showtime)

Says Seattle newspaper, The Stranger: “The existence of adult women who are not interested in “becoming someone’s wife” and “making babies” constitutes a medical emergency that requires us to treat women who are currently pregnant with a dangerous experimental hormone. Otherwise their daughters might grow up to, um, be nominated to sit on the Supreme Court, serve as cabinet secretaries, take 18 Grand Slam singles titles, win Grammies, and take their girlfriends to prom.”

I’m freaked out. But I am so glad that the media is furiously questioning and exposing Dr. New and her collaborators. Their whole “mission” sounds like something along the lines of 1984 or Fahrenheit 451. Given that, I surely hope that the medical community and mothers-to-be steer clear of Dr. New’s mad science experiment.

[tweetmeme source=”MaressaSylvie” only_single=false http://www.URL.com%5D

Like this at Facebook!Share on Facebook Share on Facebook

@MaressaSylvie’s Tweets

Header Designed By

Header designed by Krystyn