Looking back through four years of lab results, I noticed that one test has almost always come back flagged as "high" - MCH.
Now, I admit, it hasn't been very high, just one or two points over the top of the range, but given that we've turned over just about every rock looking for the source of my fatigue, what if this is the one we've missed?
So I asked my family practitioner why she thought it was constantly elevated. She said that it was likely due to consuming alcohol. *rolls eyes* As anyone with fatigue will understand, drinking alcohol is strictly a special-occassion-one-glass kind of thing, as it puts me to sleep almost instantly.
"Honestly, Penelope...We can't follow every trail you find in your lab results", she said in her usual annoyed voice, "some people just have a higher level than others".
Well...OK, but when I feel AWFUL for years, do you think we could just consider that it might be meaningful?
So, other than knowing that MCH means Mean Corpuscular Hemoglobin, what does it indicate (other than alcohol abuse) and is it really normal to be out of range for years on end?
Is it wrong that I'm pissed off at her non-answer?
Jan 30, 2012
Jan 25, 2012
I fell asleep in the middle of my workout.
I'm not even exaggerating.
In the middle of what was supposed to be a 45 minute walk on the treadmill, it hit me like an attack. A sleep attack. If I don't get off this machine right now, I am going to keel over sleeping and kill myself.
I get off the machine. Only 14 minutes walking and two minutes running, damn.
I get down on the floor. Ok, this isn't so bad...I can do some yoga stretches while I'm down here...zzzzzzz.
Thirty minutes later I wake up to find my face stuck to the carpet with the treadmill next to my nose. This is not going to look good on my bodybugg daily workout chart.
I briefly ponder getting back on the machine and realize it's hopeless. Must sleep. Right now.
If it weren't kind of funny, I might just cry.
In the middle of what was supposed to be a 45 minute walk on the treadmill, it hit me like an attack. A sleep attack. If I don't get off this machine right now, I am going to keel over sleeping and kill myself.
I get off the machine. Only 14 minutes walking and two minutes running, damn.
I get down on the floor. Ok, this isn't so bad...I can do some yoga stretches while I'm down here...zzzzzzz.
Thirty minutes later I wake up to find my face stuck to the carpet with the treadmill next to my nose. This is not going to look good on my bodybugg daily workout chart.
I briefly ponder getting back on the machine and realize it's hopeless. Must sleep. Right now.
If it weren't kind of funny, I might just cry.
Jan 23, 2012
my bodybugg (TM)
I have a bug living on the back of my arm; monitoring everything I do for 23 hours a day. Yes, I am under constant surveillance; and I have signed up for this voluntarily.
It's a Bodybugg, a small gadget worn on the back of the upper arm that will be counting my calories burned day in and out.
Our physician - knowing how much Brilliant Husband and I like our computer gadgets - has recommended that we order Bodybuggs to keep better track of our fitness and food intake.
The bodybugg took a little time and effort to register with the system, but once activated, it is an amazingly easy system to track energy input and output. The program relies on the user to input food intake using a well developed food database. The armband sensor...well, it is all very technical, but apparently is able to track calories burned to a very high degree of accuracy. Users are encouraged to wear the armband 23 hours a day for optimum tracking.
Once the daily information is uploaded into the program, charts are created which illustrate the number of calories burned per minute throughout the day. Graphs display the number of calories eaten & burned, and give you the numbers to aim towards to reach the desired goal.
Yes, the bodybugg is expensive (BH tells me that it costs less in the US, but that Canada's only distributor is pricey at approximately $300 per unit), and requires a subscription to their online program once the first complimentary six month subscription expires; but if you are like me and LOVE information, this is the ticket.
Since putting it on two days ago, I have already become aware of opportunities to increase physical activity in my daily activities...and as for food...Does peanut butter really have that many grams of fat!?
I've set a goal to lose twenty pounds. My bugg informs me that on a sensible plan, we are looking at end of April to meet my goal. Wish me luck!
Edited to Add:
That darn bug is a nag. It coerced me into 50 minutes of unintended treadmill time (walking, slowly) that I hadn't planned on...all because it told me that I hadn't met my targets for the day. I think this means that it's working.
It's a Bodybugg, a small gadget worn on the back of the upper arm that will be counting my calories burned day in and out.
Our physician - knowing how much Brilliant Husband and I like our computer gadgets - has recommended that we order Bodybuggs to keep better track of our fitness and food intake.
The bodybugg took a little time and effort to register with the system, but once activated, it is an amazingly easy system to track energy input and output. The program relies on the user to input food intake using a well developed food database. The armband sensor...well, it is all very technical, but apparently is able to track calories burned to a very high degree of accuracy. Users are encouraged to wear the armband 23 hours a day for optimum tracking.
Once the daily information is uploaded into the program, charts are created which illustrate the number of calories burned per minute throughout the day. Graphs display the number of calories eaten & burned, and give you the numbers to aim towards to reach the desired goal.
Yes, the bodybugg is expensive (BH tells me that it costs less in the US, but that Canada's only distributor is pricey at approximately $300 per unit), and requires a subscription to their online program once the first complimentary six month subscription expires; but if you are like me and LOVE information, this is the ticket.
Since putting it on two days ago, I have already become aware of opportunities to increase physical activity in my daily activities...and as for food...Does peanut butter really have that many grams of fat!?
I've set a goal to lose twenty pounds. My bugg informs me that on a sensible plan, we are looking at end of April to meet my goal. Wish me luck!
Edited to Add:
That darn bug is a nag. It coerced me into 50 minutes of unintended treadmill time (walking, slowly) that I hadn't planned on...all because it told me that I hadn't met my targets for the day. I think this means that it's working.
Jan 22, 2012
equal time for my cat
Since yesterday's post was dedicated to my little snow bugs, today I thought I would give equal time to my beautiful Ms Kitty.
Ms Kitty has not been feeling her best lately. Actually, while BH and I were on vacation two weeks ago, she took quite ill and required a visit to the emergency veterinarian. She was diagnosed with a bladder infection and given 21 days of antibiotics.
(21 days, twice a day....have you ever tried giving a cat a pill?)
Besides that, she is feeling the hands of time, with arthritis slowly taking over her hip joints. We have relocated her litterbox to the main floor, as the stairs have recently become too much for her little body to manage. We have also installed a staircase to our bed so that she won't need to jump up and down anymore.
(Tramadol, twice a day...forever)
With her pain under control and her bladder infection treated, she is beginning to look like her old self again. Which is good, because I can't imagine life without my cat.
Jan 19, 2012
The one where I play House, MD. (and it doesn't go well)
Throughout the past few years, while I've been fighting the mystery illness, the only doctor I've felt has been on my side has been my psychiatrist.
I find it ironic that the only physician to advocate a physiological explanation for my symptoms is my psychiatrist, while the internal medicine specialists have brushed me off and made me feel like:
a) a hypochondriac
b) a malingerer
c) suffering from a conversion disorder,
d) I'm wasting their time.
So it pains me that during my last appointment with the doctor I trust the most, I pushed too far and took his comments way too personally.
I've been feeling a lot better since my thyroid medication was increased, but still, not well enough to return to school or even go for a long walk.
I am frustrated beyond belief and have made it my mission to diagnose myself. You see, my thinking is that if I don't do the legwork, and something gets missed, I'm the one who will live with the consequences.
It's not good enough for me to know that my thyroid is suddenly tanking again. I want to know "Why??"
With my ANA still sitting at a hard-to-brush-off 1:640, I am looking for clues to what's going on in my body.
I've been told the most likely culprit is Hashimoto's, but a test of thyroid auto-antibodies came back negative.
So I asked if there was any chance my symptoms could be pituitary. I've looked into adult growth hormone deficiency and the symptoms all fit. Apparently, a 2007 study found that people with thyroid disorders have a reasonable chance of having anti-pituitary antibodies.
This theory would describe my high positive ANA and the symptoms of crushing fatigue and periodic depression.
So when he looked at me warily and told me I was taking this too far, I felt like I was losing my only ally.
After seeing tears start bursting from me, he told me that he would look into my theory with a growth hormone test (but not the stimulation test; which I understand is the 'gold standard). He promised he would stick with me, but I feel like I've pushed the relationship too far by coming up with a far-out medical hypothesis.
He assured me that such a disorder would be very rare. But then again, I argued, so is WPW, so is Factor V Leiden, so is Malignant Hyperthermia - but being rare hasn't stopped me before from being diagnosed with some uncommon disorders.
The appointment ended with me in tears and him looking frustrated and saddened. I'm not sure where to go from here.
Do I apologize?
Do I send him a card and thank him for his support?
Do I just wait until my next appointment and bring it up then?
I feel alone on this journey and I'm afraid I've lost the support of the only doctor willing to travel it along with me.
I find it ironic that the only physician to advocate a physiological explanation for my symptoms is my psychiatrist, while the internal medicine specialists have brushed me off and made me feel like:
a) a hypochondriac
b) a malingerer
c) suffering from a conversion disorder,
d) I'm wasting their time.
So it pains me that during my last appointment with the doctor I trust the most, I pushed too far and took his comments way too personally.
I've been feeling a lot better since my thyroid medication was increased, but still, not well enough to return to school or even go for a long walk.
I am frustrated beyond belief and have made it my mission to diagnose myself. You see, my thinking is that if I don't do the legwork, and something gets missed, I'm the one who will live with the consequences.
It's not good enough for me to know that my thyroid is suddenly tanking again. I want to know "Why??"
With my ANA still sitting at a hard-to-brush-off 1:640, I am looking for clues to what's going on in my body.
I've been told the most likely culprit is Hashimoto's, but a test of thyroid auto-antibodies came back negative.
So I asked if there was any chance my symptoms could be pituitary. I've looked into adult growth hormone deficiency and the symptoms all fit. Apparently, a 2007 study found that people with thyroid disorders have a reasonable chance of having anti-pituitary antibodies.
This theory would describe my high positive ANA and the symptoms of crushing fatigue and periodic depression.
So when he looked at me warily and told me I was taking this too far, I felt like I was losing my only ally.
After seeing tears start bursting from me, he told me that he would look into my theory with a growth hormone test (but not the stimulation test; which I understand is the 'gold standard). He promised he would stick with me, but I feel like I've pushed the relationship too far by coming up with a far-out medical hypothesis.
He assured me that such a disorder would be very rare. But then again, I argued, so is WPW, so is Factor V Leiden, so is Malignant Hyperthermia - but being rare hasn't stopped me before from being diagnosed with some uncommon disorders.
The appointment ended with me in tears and him looking frustrated and saddened. I'm not sure where to go from here.
Do I apologize?
Do I send him a card and thank him for his support?
Do I just wait until my next appointment and bring it up then?
I feel alone on this journey and I'm afraid I've lost the support of the only doctor willing to travel it along with me.
Jan 16, 2012
Jan 12, 2012
Heaven, I'm in heaven...
Actually, I'm in St. Kitts, but close enough...
and, amazingly, wonderfully & surprisingly - I feel GRRreat!!!
Swimming, lazing about, snorkeling, eating delicious fish, making Vitamin D, what more could I ask for.
Jan 9, 2012
Catching Up
Hello and Happy New Year!
Sorry for the hiatus, but when I'm not feeling well, I hate talking about it, even on my blog, which I created so that I could talk about it...
When you last heard from me, I was in Florida with my family. I did my best to keep up with everyone, but it was a slog. Shopping trips were cut short so I could get back to the condo to nap, swimming (which started strong) fell down to a crawl until even the security guard at the pool commented that I was looking tired.
Mostly I wanted to be alone, as I felt I was always disappointing my mother with my persistent fatigue.
But if Florida was tough, coming home was worse. I watched my energy nose-dive until walking up and down the stairs left me collapsed on the floor, trying to catch my breath.
"Maybe you're just out of shape", mom offered.
"But Mom, I was just swimming 80 laps a day, three weeks ago", I hissed.
"Well, yes, that's true..."
"I walked with you up and down the beach for miles." Why does no one else see that this doesn't make sense?
"Well, yes, I see what you mean," she said, but she didn't. She really thought I needed to just hit the treadmill.
I suppose secretly I hoped myself that maybe my cardio just needed some work. I hit the treadmill with a 5 minute run. It was heaven. I felt refreshed and more alive than I had been in months. The next day was fabulous, I was full of energy and thinking of getting back to school.
The following day I did not leave my bed. Nor the day after. Nor the day after that. Standing up made me so dizzy that I couldn't even make it through mass. My heart would pound and beg me to sit or kneel.
My doctor ran blood tests and called me back to say everything looked fine. I asked for a copy of the report and scrutinized every line of reference ranges.
I noticed that while not flagged, my TSH was 4.2, much higher than the usual 1.0 to which I had become accustomed. Could that small a change make me feel this miserable? Clearly the answer was yes.
Oh yes, and my ferritin was back down to measly 45, despite daily iron supplements.
And lastly, my fasting blood sugar was one point away from hypoglycemia at 3.7 mmol/l (64 mg/dl). A look at my A1c showed that low blood sugar was at least a three month trend.
Low thyroid, low iron, low blood sugar. No wonder I felt eight shades of miserable. But since none of the tests were 'flagged', everything must be good, right?
And the mystery ANA? It remained a 'high positive' at 1:640.
While my concierge-family-physician thought everything looked good, my psychiatrist (who was also copied on the tests) called me a few days later and walked through the results with me; confirming that my blood tests were odd, even though still technically within range.
I find it ironic that my psychiatrist seems to be the only physician who believes that something is wrong with me...physically.
A little extra Synthroid and 2012 would be off to a better start, right?
Well, maybe...
Sorry for the hiatus, but when I'm not feeling well, I hate talking about it, even on my blog, which I created so that I could talk about it...
When you last heard from me, I was in Florida with my family. I did my best to keep up with everyone, but it was a slog. Shopping trips were cut short so I could get back to the condo to nap, swimming (which started strong) fell down to a crawl until even the security guard at the pool commented that I was looking tired.
Mostly I wanted to be alone, as I felt I was always disappointing my mother with my persistent fatigue.
But if Florida was tough, coming home was worse. I watched my energy nose-dive until walking up and down the stairs left me collapsed on the floor, trying to catch my breath.
"Maybe you're just out of shape", mom offered.
"But Mom, I was just swimming 80 laps a day, three weeks ago", I hissed.
"Well, yes, that's true..."
"I walked with you up and down the beach for miles." Why does no one else see that this doesn't make sense?
"Well, yes, I see what you mean," she said, but she didn't. She really thought I needed to just hit the treadmill.
I suppose secretly I hoped myself that maybe my cardio just needed some work. I hit the treadmill with a 5 minute run. It was heaven. I felt refreshed and more alive than I had been in months. The next day was fabulous, I was full of energy and thinking of getting back to school.
The following day I did not leave my bed. Nor the day after. Nor the day after that. Standing up made me so dizzy that I couldn't even make it through mass. My heart would pound and beg me to sit or kneel.
My doctor ran blood tests and called me back to say everything looked fine. I asked for a copy of the report and scrutinized every line of reference ranges.
I noticed that while not flagged, my TSH was 4.2, much higher than the usual 1.0 to which I had become accustomed. Could that small a change make me feel this miserable? Clearly the answer was yes.
Oh yes, and my ferritin was back down to measly 45, despite daily iron supplements.
And lastly, my fasting blood sugar was one point away from hypoglycemia at 3.7 mmol/l (64 mg/dl). A look at my A1c showed that low blood sugar was at least a three month trend.
Low thyroid, low iron, low blood sugar. No wonder I felt eight shades of miserable. But since none of the tests were 'flagged', everything must be good, right?
And the mystery ANA? It remained a 'high positive' at 1:640.
While my concierge-family-physician thought everything looked good, my psychiatrist (who was also copied on the tests) called me a few days later and walked through the results with me; confirming that my blood tests were odd, even though still technically within range.
I find it ironic that my psychiatrist seems to be the only physician who believes that something is wrong with me...physically.
A little extra Synthroid and 2012 would be off to a better start, right?
Well, maybe...
Subscribe to:
Posts (Atom)