Healthy Obsessions

The Adventures of a Mild Obsessive Compulsive

Category Archives: Medical

15 Percent Chance of Cancer

Which isn’t actually all that high. Although that number is probably not accurate for me.

So. Here’s the latest. The nodule on the left lobe of my thyroid was benign. The nodule on the right side was… we don’t know. The cells they found are present in both benign and malignant nodules. There’s apparently no way to know until they’ve cut that puppy out of me and dissected it in pathology.

My doctor recommends getting it out. Removing the right lobe of my thyroid. She would also be in support of removing the whole thyroid, so that they won’t have to go back in later to remove the left if the right proves cancerous.

If I keep the left, that means I have some thyroid function left. It might even be enough that I wouldn’t need supplementation, or could go with a lower dose. I… rather like the idea of keeping as many of my body parts as I can. I don’t like the idea of needing to completely depend on thyroid supplementation. Not because I mind taking medicine; that’s never been a problem. But because when I imagine surviving the apocalypse and being without recourse to medicine or advanced technology… it seems having some thyroid function left would be a good idea. This is why I’m also very interested in laser eye surgery. Contacts may not be easily come by after Armageddon. And no, I’m not saying I actually *believe* there’s an apocalypse coming. I do, however, think civilization is far more fragile than we might like to believe.

But back to that 15% statistic. That number applies to the population at large. It does not apply to celiac patients in specific. In the general population, we get averaged out by other people. However, celiac patients are apparently 10 times more likely to get thyroid nodules than non-celiac patients. We’re more susceptible to certain cancers (thyroid being one, non-Hodgkins lymphoma being another). I don’t actually know my odds on that one. I’ve done some study and not found much. I’ll probably find more if I dig deeper. But. Current data.

My father was asking me if keeping the lobe was an option. Not because he’s recommending it, because he doesn’t know and was wondering what my options were. So far, the literature I’ve read is saying to get the lobe removed. If I have thyroid cancer, I will not know it from thyroid function. The thyroid can keep chugging along and producing normal amounts of hormone even while home to cancer.

My doctor says it’s not a rush. I do have some time to think about it and do more research. I’m leaning towards removal of the right lobe. If I did get the whole thing taken out and then learned it wasn’t cancerous, I’d be really upset. Reminds me of my grandma cutting mold off a slice of bread, “Why throw that away? It’s a perfectly good slice of bread!”

The doctor’s concern is the risk of anesthesia, plus the risk of nicking either the parathyroid or the vocal chords. I don’t judge any of these risks sufficient reason to remove the whole thyroid. If I need to go in for surgery twice, I’ll do it.

Yesterday I got Needles Stuck in My Throat

pic_fna_noduleAnd it kinda sucked. But only kinda.

Thyroid biopsy.

When I went in for my physical exam, my primary care doc had me drink a glass of water while she pressed her fingers against my throat. Looking for exactly what she found. Thyroid nodules. Except we didn’t know that’s what she found. Just that it felt off to her. So she sent me to get a sonogram of my throat, and that’s when we found the nodules. Two large ones (one on each side) and something like a dozen small ones (only on one side).

One nodule, the largest one, showed some peripheral vascularity; it had blood flowing to it. From what I’ve read internal vascularity, within the nodule, is much more of a concern.

I went to an endocrinologist to get the nodules biopsied. She showed me the sonograms, which I greatly appreciated, applied topical anesthetic to my neck, and then waited until the anesthetic took effect. Then they wiped down my neck with betadyne and proceeded to insert needles into my thyroid.

They wanted three samples per large nodule. The actual moment when the needle breaks skin isn’t bad. You feel it, but not much. It’s once the needle is in the thyroid and they have to wiggle it around a bit to cut out a sample. That part hurt. It wasn’t horrible. It was unpleasant.

They took seven samples from me; the endocrinologist wasn’t happy with one of the samples so did an extra one. I am all for that. I’d rather have too many samples than too few.

Afterwards, they stuck two little round bandaids on my neck, which immediately made me think “vampire bite”. My boyfriend had the same reaction when he saw them.  They also gave me an ice pack.

It’s after that it hurts. Yesterday evening and today, it’s unpleasant. Reminds me of when I had the tonsillitis of doom. Which is not something I ever like to be reminded of. So that’s been unpleasant. I think the main issue is just that your neck is constantly moving as you talk, look around, eat… do anything, really. So you feel it constantly. The same procedure elsewhere wouldn’t be as unpleasant.

But, it’s done now. I should be getting the pathology results this week.

How Celiac Became the Disease Du Jour

This is my theory. I make no claims of scientific thoroughness, just some logical extrapolations.

Baby boomers.

Boomers were born between 1946 and 1964, so we’re talking about an age range of 48 to 66. The baby boomers are getting older and beginning to hit senior citizenship. Understandably, they’re getting most of the focus of the medical industry at the moment. Things don’t work quite as well as they used to, but they still work well enough that care is optimistic instead of palliative, and people in that age range, on average, are already established. They have health insurance.  They probably have more money than, say, a 22 year old would. So that explains the focus on their generation.

Part 2 of the puzzle has to do with what happened when the baby boomers were kids.

At that time, celiac disease was considered a childhood illness that one could grow out of. Sprue was a more common name then (and that’s what my Grandma still calls it). A fair number of baby boomers were diagnosed with celiac disease; makes sense, the disease hadn’t really been diagnosed before the 1940s. Those children were put on gluten free diets.

After you’ve been on a gluten free diet long enough, your body recovers. It regrows the villi in your intestine. You regain the ability to process other foods (like dairy, which is the first to go when your villi start taking damage).

When the baby boomers were kids, that recovery was considered permanent. So, after a long enough time, the kids were told they no longer had celiac disease and could go back to eating gluten. Because the damage from celiac disease tends to accrue over time, the kids didn’t show immediate severe symptoms.

Not all the symptoms of celiac disease are obvious, hence the appropriately titled Celiac Disease: A Hidden Epidemic. Basically any condition that can be caused by either vitamin deficiency or inflammation can be a result of celiac disease. Doesn’t guarantee that it’s a result of celiac disease, just means that there’s a huge number of potential symptoms. This makes it harder to diagnose.

So we have these kids who have been told they’ve outgrown celiac disease who go back to eating gluten. They develop symptoms that are unpleasant, but not life threatening. What’s more, the symptoms aren’t always the obvious intestinal ones. And because the American medical institution believed for a very long time that celiac disease was ONLY a childhood disease, that means these now-adults weren’t diagnosed with it. It likely didn’t even occur to them or their doctors.

Nifty diagram of Secondary Celiac Symptoms from http://allergiesandceliac.blogspot.com

Instead, the doctors diagnosed them with the secondary conditions that were just symptoms, not the source of the problem. Heart burn? We have medication for that. Hormonal irregularities? We can treat that. Frequent respiratory infections? Happens. And we can treat that, too. Infertility? Well, it’s hard to know what causes that.

But the baby boomers are getting older, and this is when the damage from celiac disease takes a huge toll. Arthritis, osteoperosis, anemia, vitamin deficiencies, depression, neuropathy, fatigue… The body doesn’t have the benefits of youth to offset those symptoms. So the baby boomers go in to their doctors and they demand something be done. So it is.

So, yes. Celiac disease is the latest fad. That doesn’t mean, however, that it isn’t real.

Fitbit Redux plus the new Aria

I gave in and ordered a fitbit ultra. At some point, I lost my original fitbit and by the time I found it again, I lost the charger. I kept thinking I’ll find the charger, and what a waste it would be to buy another fitbit when I already have one! And then I thought I could get a charger through ebay, until I realized that would cost me at least half (if not more) the price of a new fitbit.

So. New fitbit! I got the plum one since it was on sale through my gym.

The ultra is pretty nifty; it’s a lot like the original but with a stopwatch and stair mode. But those are not the things that excite me.

As awesome as the fitbit is, and as awesome as all the graphs and stats are (and they are an OCD dream), I have always hated the food logging interface. It was clunky and time consuming. Creating custom foods was a pain. I used to wish that I could somehow combine LoseIt with my fitbit data, and guess what… No idea when this happened, but sometime during my long separation from my fitbit, they did exactly that.

For that matter, the food logging interface on FitBit itself looks a lot better now. Will have to play around with that some.

The fitbit aria

Want

Fitbit has also just launched their new product, the Aria: my new object of health-tech lust. A scale. It looks like a competitor with the Withings Wi-Fi Body Scale, which has long been the gold standard of high tech scales. Both obviously measure your weight, but both also measure your body fat vs. muscle percentages. They also each have free iPhone and Android apps, wireless syncing, family settings (so more than one person can use the scale), nutrition recommendations, and exercise plans.

For that matter, both can be linked to your fitbit or LooseIt data, among many other apps & services. Withings seems to have more services set-up already, but that’s not too surprising considering how long they’ve been around.

The only real difference I’ve been able to see, not having used either one, is price. The fitbit aria is $30 cheaper, clocking in at $129.99.

Crazy Tired and Don’t Know Why

There are so many potential causes:

  1. Mom’s radiation is over. Tremendous relief coupled with some amount of emotional collapse.
  2. Went back on sugar over last weekend when we went wine tasting.
  3. Went off SCD (see previous line).
  4. Ran out of Welbutrin (sort of). Did have a few pills left that were not extended release. Problem was, I forgot to take the second dose in the afternoon. Back on full dose as of yesterday.
  5. CPAP has sprung a whistle. The intake is whistling like mad whenever I use the CPAP. It’s bad enough that neither J nor I can sleep through it. I futzed around with my CPAP settings the last two nights (yeah, yeah, I know patients aren’t supposed to hack into the Clinician’s Menu, but I’m nosey). Which helped a little. Lower air pressure, lower whistle. Sadly, I’ve come to the conclusion that the setting my doc had me on was probably correct. My AHI was not so good on the lower pressures. And the pressure average, come the morning, was always very close to the max pressure.
  6. Crazy hormone nonsense. Have I mentioned I have crazy hormone nonsense going on all the time? Yeah. I’m increasingly tempted to go back on the pill just to have it all STOP. But that has its own repercussions.

Today, off to the DME to see if they can fix the whistling issue. And then back to work in rush hour. Things are okay. I’m just tired.

Things to Do with a Zeo & Why FAA OSA Rules Suck

Another interesting thing to do with a Zeo: make your partner wear it.

Particularly if your partner, like mine, complains about being tired all the time and thinks you’re the cause because you always want to go to bed late.

Turns out, his sleep when I’m next to him is actually better than when I’m not. Also turns out that me waking up regularly throughout the night doesn’t actually register with him. Instead, we have learned that his sleep is very disturbed and he gets a very tiny amount of deep sleep.

Hopefully this is something easily dealt with. Hopefully it’s not his sleep apnea coming back. He had a surgery before I met him that supposedly dealt with it. Certainly made him feel better. It was not the UPPP nor the MMA, but I can’t recall the name of the procedure at the moment. It did involve restructuring his soft palate and removing the uvula, but it also involved other steps I’m not recalling.

He’s reluctant to go back to the sleep doc, though. If he does, and he’s diagnosed with sleep apnea, he loses his piloting license. There are tests that he can undergo to get a medical exception, but those are exceptions. And expensive.  And, while he isn’t a professional pilot, flying is one of the few things he does just for the joy of it. Losing that outlet would be bad. Read more →

10 Effective Sleep Aids

There are tons of different sleep aids out there. Some work, some are complete snake oil. Expensive snake oil, at that. Lord knows many of us have bought plenty of it. Here are some things that do work. Not all of these items actually help you get to sleep. Some help you wake up at the right time or in the right way, which kinda goes hand in hand with that whole trouble sleeping thing.

  1. Melatonin Sublingual 3mg – 60 – Tablet - Gluten free sublingual melatonin from Douglas Labs. It’s a small, small tab that you place under your tongue about a half hour before bedtime. It will dissolve slowly. This is by far the most effective melatonin I’ve found out of the many that I’ve tried. The only thing more effective than this, for me, is Ambien. For some reason, this brand is only distributed through “healthcare practitioners” and, apparently,  Amazon. If you’re like me, and you have trouble falling asleep at night, it might well be from a lack of sufficient melatonin, and this may well be worth trying. Read more →

Gluten Free is Such a Fad

I’m standing at the checkout at WholePaycheck with my usual basket of gluten free items, and the checker looks at my basket and then smirks and says, “That’s such a fad right now.”

Anyone else ever get this kind of reaction?

On a very personal level, I find it frustrating. Not the fad itself, not precisely. But… Celiac disease is a pain in the butt. Particularly when I was first adapting to the lifestyle, I resented it. No cookies, no kitkats, no pasta, no flour tortillas, no easy shopping anymore. And getting that kind of smirk and snark just made it worse. Like ladling a cup full of condescension sauce over schadenfreude pie. No one likes being the on the receiving end of schadenfreude.

Read more →

23 and Me Sale! (and another health tracking related sale)

OMG. They’re back down to $99 until 11/29. That’s the deal I took advantage of in April. For full genetic testing – health and ancestry. That’s how we learned that both of my parents carry the same marker for celiac disease. And that my mother’s Italian Catholic family can be traced back to Yemeni Jews. And that my father’s family can be traced back to one particular Jewish woman 2000 years ago.

You know how obsessed I am with health and data. This is exciting! I need to ask my Mom if she wants one for my brother, or her brother. Or if Grandma wants one…


Edited to add – The glucose testing meter I bought the other day (impulse buy at the pharmacy) is also on sale at Amazon. For those, like me, who want to obsessively check everything. Or are at risk for diabetes. Or who have diabetes. You get the gist. Bayer Contour USB Blood Glucose Monitoring System. Has a USB interface that allows you to upload data to your computer and track that way. I’ve tried the meter today, haven’t played with the USB interface yet. Amazon has it for $29 + $5.48 shipping. Walgreens has it for $30, in store (sold out online).

I bought mine in store; it’s normally around $80.

Six Gifts for the Recently Diagnosed Celiac in Your Life

Friends and coworkers seem to be coming out of the woodwork lately asking me what they can feed/give a recently diagnosed celiac relative (amazing how many of us there seem to be wandering around). And seeing as the holidays are fast approaching, I decided to write up a  list of several things that can be incredibly helpful gifts for a celiac just starting out on a gluten free diet.

  1. Celiac Disease: A Hidden Epidemic – Did you know that Sweden had an epidemic of celiac disease among children born in the 1980s and 90s? This book tells you how and why it happened. Did you know that celiac patients are at higher risk for Lupus and Diabetes? This book goes over the research. This book was first on the list of resources my celiac doc gave me (and first in this list I’m making) because it gives a superb big picture overview of Celiac Disease.
  2. Gluten Free Living Subscription – I recommend this one because I know how much I want it :) It’s a quarterly magazine covering the gluten free lifestyle, the latest medical developments, recipes, events…
  3. Read more →