Please Be Careful with Patient Advice

I don’t want to disparage the value of learning about your medical condition online, especially when getting proper treatment from professionals can be so frustrating.  I’ve certainly had my share of terrible doctors, and I wouldn’t have found proper treatment for Hashimoto’s thyroiditis if it weren’t for patient advocates like Mary Shomon, and the books and surrounding community of Stop the Thyroid Madness, among other sources.

HOWEVER, lately I’ve been noticing a lot of people seeking specific medical advice from the internet, and I think that’s dangerous.  Maybe it’s because all of the posts from thyroid patient Facebook groups are suddenly showing up all over my timeline, but it seems like every day someone is asking a question they should be asking to a doctor.   For example: “I ordered iodine supplements in the mail.  My doctor told me to only take half a pill; should I go ahead and take the whole thing?” 

NO, you should take half a pill, like your doctor said – the one who has a medical degree and knows your personal patient history!

“But Jen, lots of doctors are terrible.  What if this doctor doesn’t know what he’s doing?  Why should I trust this doctor’s advice when other patients are giving me different information?”

Then please, please find a new doctor.  I know it can be hard.  I know it can take a long time to get an appointment.  I know that some people live in areas where good doctors aren’t accessible.  I get it, and I know what it’s like to be so desperate to feel better that you’ll literally try anything.   But it’s scary when I see people asking for advice that could be potentially dangerous.

I know that patient communities aren’t allowed to give medical advice, because that’s illegal.  You’re supposed to say “patient experience has shown…”  But that doesn’t stop people from posting about a miracle supplement they tried that made them feel better, which leads to other people in the group ordering that supplement from the internet and taking it without consulting a physician.  Iodine is a good example, since its use is controversial - however, many patients online will tell you it’s not controversial and everyone should take it.  This weekend, I saw someone tell a patient who has a rare iodine allergy that her doctor is wrong and she should take it anyway.  Natural thyroid hormone is another example – I’m always seeing people post about ordering their own from the internet, and getting advice from other patients about dosage.  People will specifically post that they are going against their doctor’s dosage and ask other patients how much they should be taking.

I actually did the same thing when I started taking dessicated thyroid hormone.  My doctor prescribed a specific dosage, and I increased it on my own based on advice from the internet.  I ended up severely hyperthyroid, because I misjudged my symptoms as being hypothyroid symptoms instead of the opposite, and I was over-dosing.  I was told that the hyperthyroidism had put so much stress on my heart that I was at risk of heart failure.

Of course, there are success stories too.  People post every day about how they got their lives back, and they couldn’t have done it without support from the patient community.  There are some extremely intelligent, knowledgeable people in these communities, who work hard every day to fight for other patients to get the proper medical treatment they deserve.  But there is also bad advice, people who parrot things they’ve heard without doing research themselves, and people who think that if something worked for them, it will work for everyone.

So, make use of these communities, but be keep a few things in mind:

  • The people in thyroid communities are patients just like you.  They have struggled like you, and some of them have recovered.  But they are not medical practitioners.  Some of them are extremely well read and knowledgeable, and you should use their advice to educate yourself so you can work with your doctor on a treatment plan.  Finding a good doctor should be priority #1.  If this is an obstacle, then just be careful with the advice you follow.  (For instance, ordering medication on the internet without a prescription and dosing yourself based on advice from a stranger who knows nothing about your medical history is generally not a good idea.)
  • Thyroid treatment is not a one-size-fits-all solution.  Thyroid patients should understand this, since most of us have gone through the “Synthroid is all you need” treatment plan at least once.  So, if someone tells you “this combination of diet, supplements, and medication worked for me, so you need the exact same thing,” remember that you are a different person who likely requires a different solution.
  • Not every thyroid patient is an expert just because they post in a community group, just as not every doctor is good just because they have a medical degree.

Be smart!

Understanding Inadequate Thyroid Care

I got in an internet discussion a few weeks ago about the alternative medicine joke:

Q. What do you call alternative medicine that works?

A. Medicine.

There seems to be a misconception that alternative medicine is everything from healing crystals to all-juice diets, and “real” medicine is stuff that works.  One person said, “if a treatment were proven, my doctor would do it.  If he doesn’t, then it’s bullshit.”

Unfortunately, I have learned that thyroid treatment is a perfect example of why it is a lot more complicated than that, and how there is a massive gray area between “proven” and “BS”.

I was reminded of that discussion after The Coalition for Better Thyroid Care posted a link to this article today, which addresses the problems a lot of thyroid patients face in their medical treatment.  Most notably:

“The lag between the discovery of more effective forms of treatment and their incorporation into routine patient care averages 17 years.”  

17 years.  Seventeen years for something that is “proven” to make its way into routine patient care.  That’s an entire human being who has gone through puberty and acquired a drivers’ license.

It took me five tries to find my current thyroid doctor, and his clinic is considered an “alternative” clinic.  This is because he does things like:

Nothing he does is unsupported by science, and he’s happy to point to medical studies and literature for his patients to read.  One could argue that other doctors are aware of the debates about thyroid treatment and have simply made an informed decision that there isn’t enough compelling evidence to support them.  However, that hasn’t been my personal experience.

From of the four doctors I saw before my current doctor, questions were met with “I haven’t heard about that” or worse, “it doesn’t matter what new research says, because this is the gold standard for thyroid treatment”.  I have relatives whose doctors have never heard of dessicated thyroid medication, which has been used successfully in thyroid treatment since 1891.

All four doctors used the “whatever it says on the lab results page is correct” treatment method (if the lab says your TSH is too high, increase Synthroid dosage, if the lab says your TSH is too low, decrease Synthroid dosage, and if the lab says your TSH is in the normal range, you’re fine and your symptoms are in your imagination).

So what does this mean for patients?

It’s our responsibility to advocate for our own health.  Read and research (not to be confused with looking at WebMD and self-diagnosing every ache and pain as cancer), and learn how to have a conversation with your doctor as an active participant in your health care, and not be told what’s right for you.  Respect your doctor’s expertise, but still understand that you know if something isn’t right, and dismissing it is not an option.  And if you need to?  Find a new doctor.

Hopefully, the things listed above will be the gold standard for thyroid treatment sooner than 2030.

Living Well with Hypothyroidism

A post on Stop the Thyroid Madness led me to this woman’s blog post about how well she feels taking natural thyroid hormone vs. levothyroxine (Synthroid).  I thought it might be a good time to review how I’ve been feeling.

When I started this blog, I was feeling pretty awful.  I had been taking Synthroid for about 8 months, and my doctor told me that my TSH was normal, so any symptoms I might be experiencing weren’t actually symptoms, they were psychological problems.  Here are a few of the biggest symptoms I was experiencing:

  • Extreme fatigue (at its worst, I was sleeping about 18+ hours a day)
  • Serious depression, mood swings, anxiety, and general crankiness
  • Choking feeling / pressure and occasional pain in my neck
  • All-over soreness like I did the hardest workout of my life the day before, and constantly aching joints
  • Heart palpitations
  • Inability to exercise (as soon as my heart rate went up, I would get dizzy and feel like I was going to pass out, or my hands would go numb)
  • Inability to do my job (as a photographer, I didn’t have enough energy or strength to be on my feet for hours at a time, and I couldn’t book things in advance because I didn’t know how I would feel)
  • Weakness, especially in the upper body
  • Weight gain and a complete inability to lose weight no matter how hard I tried
  • Getting a cold/flu every few weeks
  • Daily headaches and frequent migraines
  • Dry skin, hair, and nails; nails that break like they’re made of paper and a ton of hair loss

It took four doctors to find someone amazing, several months of playing around with my dose of Thyroid, cutting gluten 100% out of my life, and then following a primal diet, to finally get my list of symptoms down to this:

  • Occasional fatigue or general “blah” feeling
  • Occasional mild depression/irritability

Both of those things usually happen after I eat something I’m not supposed to eat (like grains or sugar).

There might be a few other little things, but overall I feel amazing, and I’m so grateful I finally found a solution.

Last year on my 27th birthday, I said: “I bet by next year I will be feeling the healthiest I’ve ever felt!”  And it was true.  High five, past self.

Health Update + FitBit

I thought this would be a good time to post a health update.  I’ve been seeing my new awesome doctor since October.  He has me taking so many things, it’s hard to keep track.  But they’re working!  Here are some of the things that have helped me with my thyroid and adrenal issues:

  • Multivitamin – People with thyroid disease often have trouble absorbing vitamins, so it’s hard to get everything you need from diet alone.
  • Fish oil supplement - My doctor really advocates fish oil, especially for women.  I’m a vegetarian, so I avoided this for a while, but I decided my health is more important.
  • Advanced B-complex - This is another thing he strongly advocates for women who are taking birth control.
  • Magnesium - This made my heart palpitations go away!
  • Vitamin D3 - 3000 IUs before bed and I have had no seasonal depression this year!
  • Seriphos – My adrenal tests showed that while I produce the correct amount of cortisol during the day on average, my cortisol is way too high at night (making it hard to fall asleep), and way too low in the morning (making it hard to get out of bed).  This is supposed to “reset” that.  So far, it seems to be working – I’ve been getting up earlier and taking less time to fall asleep.
  • Pregnenolone – A steroid hormone that is the precursor to many other hormones in your body.  My hormone levels are all out of whack, and this has really helped with my energy levels.
  • DHEA – This hormone is produced by your adrenal glands.  My levels were very, very low.  I was scared to take this after reading other people’s experiences, because “hair loss” seems to be a recurring theme.  Luckily, that hasn’t been the case for me, and I felt better almost immediately after taking it.
  • Progesterone Cream – This has nothing to do with thyroid/adrenal issues, but my doctor met a gynecologist at a seminar who said she prescribes it to all of her patients who are taking birth control.  I agreed to try it out, and magically it has made ALL of my PMS symptoms go away.

COOL LIST, RIGHT?

This is how I’ve been feeling over the past few weeks:

  • I can stay awake for an entire day without needing a nap!
  • I can even exercise a little!
  • My fingernails aren’t breaking like they’re made of paper!
  • My hair is shiny and is actually growing!
  • My moods aren’t going up and down like a crazy vomit inducing roller coaster!
  • I have been able to work, pretty much for the first time in 6 months!

I’m really happy that I’m starting to feel almost like a normal human being again.  The main thing I want to focus on right now is fitness.  I need to gradually increase my activity level.

Dan got me a Fitbit for Christmas, which is a little device that you clip to your pocket (or your bra).

It’s basically a fancy pedometer that you also wear while sleeping, so it can tell you what a terrible night’s sleep you had.

This was the night my favourite neighbour decided to start practicing guitar below my bedroom window at 3:30am.

It gives you a picture of how active you are throughout the day.  For instance, this was yesterday:

I upgraded my account and activated the “Fitbit Trainer”.  It told me I’m sedentary and that I’m in the 14.7th percentile, meaning that 85.3% of FitBit users are more active than me. Way to make me feel like a lazy asshole!

It then recommended a goal for the number of calories I need to burn per week.  It slowly increases every week until April, where I will officially be considered “lightly active” instead of “sedentary”.

I’m a huge dork for charts and graphs, and this has actually helped me in two ways:  as motivation to increase my activity levels, and as a reminder not to do too much.  I might be feeling a lot better, but when I overdo it, it takes a long time to recover.  I have been totally kicking my chart’s ass this week:

Except today. But it's only 4:30pm.

On Monday, I walked on the treadmill for 25 minutes.  Tuesday, I walked to and from the optometrist’s office.  Wednesday, yoga.  Yesterday, 90 minutes of beginner’s tennis lessons.

I plan on starting the Couch to 5k program soon, in an effort to be able to play soccer when the season rolls around.  Last year, I missed most of the season because of fatigue, heart palpitations, irregular heartbeat, dizziness, and all sorts of other fun hypothyroid symptoms.

Other things I’d like to try this year:  hiking, completing the Ride for Heart again, possibly registering for my first race since high school.

I’m feeling really positive about 2012!

Happy New Year!

My new year’s resolutions usually look the same every year:  lose x pounds, go to the gym more often, eat more healthy food.  This year I have decided to take on a new approach, the Eat Whatever the F*ck You Want and Enjoy Every Bite diet.

The EWTFYWAEEB diet is going to be amazing.  It’s pretty much what I’ve already been doing since I stopped eating gluten last May.  It’s about a shift of perspective from “food is the thing that makes me fat” to “food makes me happy and healthy”.  It’s about embracing the fact that whole, fresh food is awesome, and rejecting the guilt that the diet and fitness industries tell us we should feel when we eat.  It’s about learning to prepare healthy, delicious foods, expanding your list of favourites, and never counting calories.

So here are my resolutions for this year:  enjoy food, enjoy exercise, enjoy life.  Who’s with me?!

2011 was not my best year ever because of my health.  This year I have to start feeling better.  I’m aiming for 2012 to be my healthiest and most awesome year yet.

Okay, that’s enough perky optimism for one day.  Happy new year, everyone!

Getting Healthy is Fun

Well, I’ve got a busy day tomorrow.

I have never done so many fun and interesting health-related things as I have since I started seeing my new doctor 6 weeks ago.  I’ve had multiple blood tests, and I got to spit in a box and mail it to the US.  Yesterday I got my finger poked so I could bleed onto some strips of paper to test for food allergies.  Now I get to do a 24-hour cortisol test, which means I get to pee in a big orange jug all day long.

I remember the days when I was horribly embarrassed any time I had to do a test (because the people in the lab have obviously never seen a cup of urine before).  You go to the bathroom, pee in the cup, hide it under your shirt, awkwardly run to the drop off area and pull out the cup when no one’s looking.  Who else does this?   Not me.  Now I’m all, “YEP.  PEE.”  Now I am talking about pee on the internet.  WHO LET ME HAVE A BLOG ANYWAY?

The good thing about this test is that it will confirm the results of my saliva tests and allow my doctor to prescribe something to fix me.  He thinks most of my current symptoms are caused by my adrenals.  Speaking of which, look at this Wikipedia page for adrenal fatigue.  This is the kind of thing that pisses me off.  If you read the PDF linked to that page, it says:

Doctors are concerned that if you are told you have this condition, the real cause of your symptoms may not be found and treated correctly.

Except, in my experience, my old doctor wasn’t “concerned” about the cause of my symptoms – he decided I didn’t actually have any (because my blood tests were in the “normal range”) and kept sending me away to feel endlessly crappy.  When I did a saliva cortisol test on my own and showed him my cortisol levels were very low, he threw the results in the garbage.  So I’ll take bullshit-alternative-medicine-that-makes-me-feel-better over doctor-who-doesn’t-give-a-crap any day.

The other interesting thing I learned yesterday is that… I might not be gluten intolerant after all.  My thyroid antibodies have doubled since last year, which IN THEORY shouldn’t happen since I cut out gluten 6 months ago.   Also, my saliva test came back as having NO gluten antibodies.  (Which could have just been because I wasn’t eating gluten.)  So, we’ll see.

 

PEE.

6 Months Gluten-Free

I missed my 6-monthiversary of being gluten free, on November 1st!

My last update was after 1 month gluten-free.  Before that, 1 week.

To recap, I was diagnosed with Hashimoto’s thyroiditis in September 2010.  I was put on Synthroid, and felt fantastic… for about 1 week.  That began a series of incredibly frustrating doctors’ appointments in which I was told that my blood tests were in the normal ranges and Synthroid is flawless and therefore not feeling well was certainly NOT from my autoimmune disease and must be caused by psychological problems. That drove me to google, which sent me to the book Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal.  In the (amazing, life-altering) book, he says that people with Hashi’s should not eat gluten.  You can read more about the gluten-thyroid connection here.

Which brings me to:

6 months.  My health has gone up and down like crazy over the last 6 months, to the point where I have no idea what’s causing me to feel worse and what’s causing me to feel better and if not eating gluten has even helped me.   I’ve written about these issues quite a bit.

One thing I know for sure is that the thyroid swelling / choking feeling in my throat is gone.  It was mostly gone a month after I cut out gluten, and then completely gone after I started taking dessicated thyroid instead of Synthroid in August.  Sometimes that feeling was so bad I would just go lie in bed because it was too uncomfortable to even hold my head up.  So having it be completely gone is amazing.

As for the rest…

Fatigue.  This is my biggest problem.  Sometimes I can hardly get out of bed; sometimes I have enough energy to go an entire day without any napping.  I am confident this has very little to do with food/gluten at this point.  My new doctor thinks this is caused by my adrenals, and I’m not absorbing vitamins properly.  I’ll learn more at my appointment next week.

Exercise. Haven’t been able to do much of anything due to weakness/shakiness/dizziness/heart issues.  I no longer think this has anything to do with food/gluten either, and it’s probably related to my thyroid and the other problems that are causing my fatigue.  Taking magnesium supplements has helped with the heart palpitations I was experiencing a few months ago.

Weight Loss.  I haven’t lost any more, but I haven’t gained any back either, which is great since I haven’t been able to work out very much and I’ve stopped counting calories and I take great joy in baked goods.

I’m proud to say I haven’t intentionally cheated on my diet ONCE.  I’ve made a few mistakes, most notably:

  • Not realizing most Asian sauces are made with a soy sauce base.  I’m still not sure if Pad Thai is as safe as I thought it was.
  • Toiletries.  I just found out my favourite shampoo and conditioner have like 5 wheat-based ingredients in each.  Also: nail polish remover, moisturizer, etc etc etc.

Things I need to get better at:

  • Planning meals before I go out / on vacation.  3 days in Venice, asking every single restaurant if they have anything senza glutine and hearing a resounding “NO” really put a damper on the trip.  As did eating mostly salads in Vegas while sitting around watching my friends eat THE BEST PIZZA I’VE EVER SEEN IN MY LIFE, because I didn’t realize that “gluten-free” and “vegetarian” are not frequently overlapping concepts in the US.
  • Cooking.  I’ve come to realize that I LOVE baking, but hate cooking.  Unfortunately 3 meals a day of cupcakes is probably not the best for my health.
  • Eating at regular intervals.  If I don’t eat every 2-3 hours, I turn into a complete mental case.  This is probably a blood sugar thing.
  • Preventing cross-contamination.  I am considering buying new kitchen stuff to better avoid cross contamination.  This is TOTALLY NOT AN EXCUSE to buy new kitchen stuff.

I still genuinely enjoy eating gluten-free.  If, at my appointment on Tuesday, my doctor said “JUST KIDDING you can eat gluten!”  I would still eat gluten-free.

One thing I am concerned about is my thyroid antibodies.  I saw my recent blood test results at my Bad Doctor’s office last week, and my antibodies have doubled.  One of the theories about the gluten-thyroid connection is that not eating gluten can stop your body from attacking your thyroid.  So in theory, my antibodies should be lower, not higher.  I am going to speak to my Good Doctor next week and he should be able to explain what’s up.

27

I turned 27 on Wednesday.

This is going to be a good year.  I just need to crawl out of this slump.  It’s been 6 weeks since I increased my thyroid medication, which means I am due for another increase, and currently feeling about as bad as it gets.  I’m not nearly as sick as I was last time, but I am still sluggish and exhausted, every single one of my joints is aching, and I can’t even go into a downward dog or lift my freaking food processor to put it away in the cupboard because I feel so weak.

Since I had to cut out dairy, I’ve been fairly miserable.  I’ve had random bouts of depression, which others have suggested might be from the hormones in milk that I’m no longer supplying to my body.  I’ve also been constantly putting myself into a very stupid cycle of being too tired to make my own meals, not being able to eat anything else because EVERYTHING EVER contains gluten and/or dairy, then feeling worse because I haven’t eaten anything, and then feeling even less like making food… which usually has me in tears by around 7pm because I’m hungry, exhausted, and frustrated.  FUN!

And I miss cheese.  This is worse than my last breakup.

Last weekend I made a meal plan for the week and went to the grocery store to stock up on ingredients.  I forgot to factor in the whole “by dinnertime I’m going to be too exhausted to stand up in the kitchen to make a meal” thing, so my boyfriend has been cooking most of the time.  I haven’t felt like posting, or taking pictures, or doing much of anything at all.  So.  Not the best birthday ever, but I bet by next year I will be feeling the healthiest I’ve ever felt!  Check out the awesome positive thinking over here!  High five!

I can’t eat dairy.

I finally saw the doctor I waited 3 months to see.  He was nice, incredibly knowledgeable, and actually rolled his eyes at the things I told him other doctors have said to me.  He said he gets a lot of patients who have had doctors tell them they have “psychological problems” without trying to find the source of their problems.

He’s hooked me up with 3 requisition forms worth of blood tests, and a saliva adrenal panel that I have to mail to the USA with a customs form that explains that there might be saliva or human feces in the box.  HAVE FUN GUESSING WHICH ONE, CUSTOMS AGENT!

He gave me some supplements to take in the meantime, and reassured me that I’m not crazy and my problem is extremely common.  I could have hugged him.

And then I could have punched him, because he told me I should stop eating dairy.

NOOOOOOOOOOOOO.

I had a surprisingly easy time giving up gluten.  I’m not going to pretend that I don’t still miss a buttload of my favourite foods, and that it doesn’t suck whenever I want to go on vacation or out with my friends, but overall I have done a really good job with my new diet.  Almost 6 months and I’ve never cheated once (except by accident), and truthfully, I don’t really miss it all that much.

But I love dairy.  I love milk, I love cheese, I love yogurt.  I eat a huge bowl of Greek yogurt for breakfast, I put cheese on everything, and I drink milk every day.  I have had a REALLY hard time this past week.  It didn’t help that we had just gone grocery shopping a couple of days before my appointment and bought a TON of dairy products.  Which I ate shamelessly, telling myself I’d only eat stuff we already bought, but I couldn’t buy anything new.

Now it’s all gone, and I’m completely off dairy.  I have no idea how I am going to accomplish being a gluten-free, dairy-free vegetarian.  I’m trying to stay positive, but… cheese.

Sad face.

Always Something

I am not doing well.

I started taking my new medication, even though I knew the dosage was too low and I would probably feel crappy.   I didn’t expect to feel so bad I could hardly function.

I felt like I’d spent days lifting heavy boxes.  My entire body ached and I was so tired I could barely move.  I would do something like unload the dishwasher, and then I was so painfully exhausted, I couldn’t even manage to put the dirty dishes in and I needed a nap for 4 hours.

Work?  Nope.  The beauty of freelancing: I don’t need to use any sick days, but I don’t make any money if I don’t do any work.

I went to see my doctor and he ordered a blood test.  I dragged myself around like a zombie for another week (during which time he didn’t bother to call me with my results) and then dragged myself back into his office to have him casually tell me “oh yeah, your TSH is over 12.”  (Somewhere between 1 and 2 is normal.  Over 3 is considered hypothyroid by the AACE.)

He decided to triple my medication, to 1 1/2 grains (90mg) from 1/2 grain (30mg), which is the lowest possible dose you can take.  For reference, most people would be taking 3-5 grains.  But it’s a start, and I felt AMAZING.  On Thursday, Friday, Saturday, and Sunday I felt like a normal person.  I stayed awake for the entire day!  I went out!  I cleaned my house!

On Monday, I needed a nap by 5pm.  Tuesday, started to feel that all-over body ache.  Wednesday, I went to yoga class and I spent half of the class LYING ON MY MAT IN TEARS (oh yes) because I had no energy, I was shaking and off-balance, and I had no strength to do most of the poses.

I feel like I’ve wasted so much of my life with this garbage.  Hopefully it will be over soon, because I am seeing my new doctor in EIGHT DAYS.