how low?

How low is too low for blood sugar?  I was wondering this after running across a multitude of “low” cut offs while looking up causes for hypoglycemia.  It’s a funny old thing, hypoglycemia.  One of the controversial diagnoses (1, 2, 3) it seems.  What exactly is so controversial about passing out and convulsing?

ine graph of author's glucose levels at fasting and .5, 1, 2, and 3 hours after oral glucose administration. Also plotted is "normal" curve for glucose.

It’s been a (knock on wood) long time since that’s happened.  Last was in 2004.  I attribute this improvement to three factors.  (a) I was dating a diabetic from 2000 to 2005 and he was able to check my blood sugar while I was symptomatic and show that indeed, symptoms = low blood sugar for me which allowed me to (b) have a slightly better awareness of when my sugar might be low and treat it pre-pass out level; and (c) after adolescence it seemed that I stabilized somewhat, or at least I was less easily sent into a low blood sugar spin.  Since having the glucose tolerance test in 2010 and getting my own glucose meter, I’m slowly getting better at recognizing very early symptoms of low blood sugars.  I still suck rather a lot and this is because I will notice but then dismiss symptoms.  Low grinding headache or nausea are both too easily dismissed for me.  Craving something like a root beer or other soda I tend to ignore now that I am trying to drink less soda (totally killing my teeth).  But these are my early symptoms, and I ignore them the same way I ignore when I’m getting overheated…they come on slow, I don’t want to stop what I’m doing and deal with it so I ignore it, and when I do I am rewarded with my body coming to a screeching halt and me on the couch for an hour of feeling like total hell.  So I need to get better at attending to these symptoms.  I know.  It’s on my to do list.  Right up there with “pee in jug for endocrinologists”.

My glucose tolerance test (GTT) results from last year are graphed here.  On the insulin levels, I didn’t have values for 1/2 hour.  Not sure why not.  It seems like that would have been good, especially since my insulin (as measured) didn’t get terribly high at all.  I also noticed that the lab’s reference ranges for glucose were not very elucidating:  tere were ranges given for fasting (65 – 99 mg/dL) and for the 2 hour mark (65-139 mg/dL), but the other times only had a low cut off (of 65 mg/dL).  From what I can see, it looks like they didn’t give the highs to avoid stepping on any doctor’s interpretation toes – i.e. there are some different cut offs for “too high” or “not normal” glucose levels during the GTT.  But those can be found online.  E.g., Carpenter and Coustan 1982; WebMD; lab tests online.  What you can’t find is cut offs for low values.  Is 65 really the low end of “normal” throughout a GTT?  I seriously doubt it.

ine graph of author's insulin levels at fasting and 1, 2, and 3 hours after oral glucose administration. Also plotted is "normal" curve for glucose.

Regardless, I did get below the (I think rather) low cut off of 65 at the 2nd and 3rd hour mark.  I’m glad this wasn’t one of those 5 hour GTT.  I’m thinking of doing a repeat at home with the finger stick…I know that finger sticks don’t measure in the same way as samples from a vein.  I will adjust accordingly if I want to compare absolute values.  Mostly, I’m interested in the curve.  I’d like to know if it has changed, because it seems to me like my blood sugar is spending a lot of time down low lately.

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Rise above

(this post was done using dictation software and while I did have to make a couple of corrections, it was largely pretty damned good…just an fyi for any of my blogging friends who maybe sometimes suffer from things like joint and muscle pain.  Also, a warning in case any “dragon errors” crop up….i.e. same part of speech homophones)

As I indicated in an earlier post, I recently dropped off the doctor forms for workplace accommodations at my primary care’s office.  Dropped ’em off on November 3rd or 4th.  I could see from my checkbook if I were interested in the exact date.

In my last post on the subject, I said that I called the doctor’s office on Friday. That is I called this past Friday, November 18 in the middle of the day and received a message that the office was closed. I made this call only after speaking with my therapist about it on Thursday night. At that appointment with my therapist I discussed that I had been meaning to call to follow up, in fact meaning to call pretty much every day last week, but would find myself at the end of the day not having called. I talked about the fact that it seemed pretty clear there’s putting this off despite very much wanting to get this going.

So it was difficult to call Friday. It was even more difficult to find the time, the privacy, the phone reception, and the impetus to call today… But I did. Today, instead of going straight to the nurse’s mailbox I pressed nine, to talk to the secretary. I greeted her and explained why I was calling, that is to follow up on my accommodation forms. She seemed hassled. Moreover, she seemed hassled by my question. She told me that she would leave a message for the nurse, but that they may not get back to me today. I asked how late they would be open tomorrow and she said they were trying to get out early and then said that they may not get back to me before Thanksgiving because I was calling so late.  It was 1:00 today, Tuesday.

tight shot of a woman's right hand giving "the middle finger" gesture.

Has it really only been like two days?

Now maybe I should’ve just let that go. But that’s just not me. Instead, I said – as nicely as I possibly could – “you know, I did call on Friday and leave a message about this.” “Friday?” she said, “that’s really only like two days.”

And so my mood is not swell. And this is why I don’t like making these calls at work. I went on my lunch break right after the phone call, a good thing since I felt a lot like I just got punched in the emotional gut. I thought about calling back and making an appointment rather than play this phone bullshit. I even had my phone out. I’d like to say that the reason I didn’t was because I was rising above, doing better, not letting the bastards get me down, and all that. But I think it’s probably more accurate to say that I decided to let my natural inclination to resume procrastinating serve a prosocial purpose.

The rising above came after. The rising above is what I had to do to avoid sinking down.

hunger

I could not stop eating last night.  So hungry.  Maybe I’m making up for lost food from last week’s bowel prep 😉   With the weekend’s cooking, chicken soup and chicken salad for the week, plus thanksgiving cooking on the horizon, we decided to take a night off from food prep and order out from my favorite local restaurant.  Steak and sweet potato.  And ribs.  Oh yum.  And I just ate and ate and ate.  And, as an interesting side note, my blood sugar just hung and hung and hung.  Didn’t go over 90 all night.

I figure with the continuing weight loss, if I feel like eating, I should.  I’ve cut out the halloween candy at least, I’m sure that hitting my body with multiple boluses of pure sugary goodness (badness) isn’t a nice thing to do to it even if it never seems to show up on the scale.  So at least yesterday’s gluttony was in the context of nutritionally decent food.

Waiting to hear back from my primary care’s office on my work-place disability accommodation request form.  My employer has a crappy form and I had asked one of the nurses how they suggested handling it.  She told me to give them one blank and one filled out.  Ok, done (note how I sum up a process that’s taken me over a year to do with two simple words which belie the extreme emotional difficulty of doing them).  I had been meaning to call all week to follow up, with the question of “so what now?” for them but each day, time would get away from me and I would hit 4:30 or 5:00 realizing that I hadn’t called and now didn’t have time to.  It doesn’t help that I have no private place to call from work – in those small spaces I can find, my cell phone has crappy reception.  I’ve learned not to add the layer of technological impediment to the already difficult arena of patient/doctor communication.  There’s already too much psycho-social noise in the signal to add in a phone that cuts out intermittently.  So I didn’t call until Friday – imagine my surprise when the voicemail announced that their office was closed.  In the middle of the day (not lunch time) on a Friday?  wtf?  Left a message anyhow, and so we move into another week of uncertainty on that front.

Nothing from the GI doc on last week’s scopes.  I have a follow up appointment the first week of December, where, if I haven’t heard from her in the meantime probably I will get the old “everything was fine” answer.  Which is of course good on one hand since cancer is what they are typically looking for in scopes, but bad on the other since I continue to have these GI symptoms, continue to lose weight, and continue without even a shred of an answer.  I recall her telling me in my post-sedation haze (why do they debrief then?) that I had stomach polyps but I believe she said they looked like “fundic” polyps, which are not usually very concerning and are thought to be associated with PPI use.  She also did a lot of biopsying in the rectum…didn’t say why, or if she did, I didn’t remember.  Maybe that’s standard procedure for her.

erg

It seems like one of the most likely but rather unfair truths that people with chronic illnesses are more likely to get the cold, flu, strep throat, GI bug going around.  Doesn’t it seem, if we were using a metric other than biology, that these folks should catch a break, having more than satisfied their getting sick quota?  So after posting about not going to work sick, off I go with a cold.  Which I caught at work.  Because no one else can do my job.  And because I was already out Monday for the double scopes.  :/

what’s up

Been a while since I’ve given a summary of what’s up medically these days.  So many scattered bits, hardly a narrative.

Doing a(nother) neuroendocrine tumor work up.  This time for carcinoid, not pheochromocytoma.  My understanding is that they are both types of neuroendocrine tumors which can be similar in effect but are not necessarily the same in things like what cells they originate from and where they tend to crop up.  The bloodwork was “within normal limits”.  Now I just need to be off caffeine long enough to to the 24 hour urine collection.  I’m saving that for post-scopes.

Having an upper endoscopy and colonoscopy on Monday.  “Can you do them both together?” I asked, half joking at the GI appointment in September.  Surprisingly, the answer was yes.  It is the one teeny bright spot in what is otherwise getting me way down.  I’ve only had two colonoscopies…or possibly one.  No, maybe two.  Anyhow, for someone with chronic diarrhea and weight loss, they do them and they do them more than once.  This is because things can be missed in one, because things that might not have been visible in one could grow or become more pronounced.  So off I go for another scope.  I HATE the prep.  Hate it deeply.  This time, I’m doing the horrible high volume PEG prep.  I do not like the PEG prep.  It starts tomorrow and as I’ve gotten closer to it, my mood has incrementally gotten more rotten.

Seeing a special mouth/oral diagnostics group in January for the recurring mouth thing…whatever the hell it is.  It sucks.  It’s painful, and my primary care and the GI doc both got a good look at it earlier this Fall and would like this checked out.  The dentist did too, and had been thinking of sending me to exactly the same group but (a) he latched on to the fact that I smoked and said it was probably just that and (b) it went away, as it does, so he decided it was all good.  Problem with it going away is that it doesn’t go away for good.  My money’s still on candida.  A search on erythematous candidiasis turns up images and descriptions that are quite similar to what I have.  If it is candida, it’s acting resistant to the usual remedies.  And a recurring, resistant, atypical candida infection suggests that my immune system is not as it should be.  I’m not on any immune suppressing drugs, I don’t have HIV, and although my antinuclear antibody tests routinely come back elevated (1:160), they are not so high that you’d jump up and yell “my god, it IS lupus!”

Dropped off my accommodation forms with my PCP.  This is for work accommodations, and quite honestly, some of them are silly.  Not silly as in frivolous, silly as in I shouldn’t have to ask for this as an accommodation, e.g. a lunch break without demands that I stop eating and work.

Chest pain is better finally, but holy crap, my arm still hurts from my flu shot.  It’s been WEEKS and I can’t move it up, across my body, or back (forward to a point is ok) without it absolutely killing.  Advil and heat help.  I’m supposed to check in next week to let the PCP know if it still hurts.  I like the RN who gave me the shot and feel bad I had to tell her that it screwed me up.  I’m assuming this is just a “oops we hit a part of your muscle that is testy” thing and hoping it will go away eventually.

So…following up with endocrine and GI in December.  Mouth appointment in early January.  I think that mid January would be a good time to do a “where have we been, where are we now, and where are we going?” appointment with my primary care.

way down now…

Last night’s hypoglycemia was a real pisser.  I finally threw in the towel at 85 and went to bed.  That’s 45 minutes after a peanut butter cup, a fruit yogurt, and a glass of cider.  No idea what tanked it, and so glad for that alarm going off in my head that got me up and checking the sugar because if that much sugar only got it up to 85, I think it was well on its way to a seriously low low.  I’m not much good for remaining conscious under 60.  Today’s been better so far, it didn’t get below 89 at least.  But my blood pressure, crimeny.  79/56.  Makes me think of this song from my younger days:  

Low down

In bed, snugly and cozy, nearly asleep when I wonder…what’s that ringing/buzzing noise? No, ignore it. Go to sleep. Bzzzzzzz….very faint. Ok, I have to pee now so I get up and investigate on my way back from the bathroom.

Sounds like a shower is on in a far off room. But I can’t localize it. I go back to bed. Turn on the side that it’s loudest on and realize I can hear it even better now that my ear is full of pillow. And also, my legs feel jumpy. And I feel kind of sick to my stomach.

I’m not sure at what point I decided to get up and check my blood sugar but gosh I’m glad I did. 68. That’s low. Certainly low enough to account for the ear ringing and nausea.

I routinely wake up in a cold sweat, I’d figured it was more of the heat intolerance thing. But I think next time that happens I’m going to check my blood sugar.

take your virus to work day!

Part of my job is supervising 11 student workers.  Most of them are new members of the work force, i.e., if they’ve had jobs before, they were jobs like babysitting, pet sitting, working in mom and dad’s office, being paid under the table for construction/contract work through a friend of the family, etc.  The debate of “call in or come in” has not been one that most of them have engaged in.  Each year, we address it.  Sometimes multiple times, most often provoked by a student showing up looking like crap, dragging, and exhibiting flu-like or cold symptoms.  As was the case yesterday.

Yesterday’s student was having chills “I’m hot and cold” he told a staff member who had just asked him to do something that involved going outside.  I asked him if maybe he should sign out and go home.  He said no, and that “I’m not really sick yet, I just feel like I’m coming down with something.  But I can still work, I don’t feel that bad.”  And to him I replied “I’m glad you don’t feel that bad yet.  But let me explain something to you about my philosophy on coming to work with something that is quite likely contagious….”

And then he got an earful about responsibility to his coworkers, to the people visiting or meeting in this building, to the people he might be asked to work with during his shift.  “You know that some people are immunocompromised, right?  So what for you is a cold, for them could result in a pneumonia.”  I went on to explain that if a student had a chronic condition that wasn’t communicable, like allergies, then I wouldn’t ask the student to stay home if he or she felt ok enough to work, but that if a student had a stomach bug, a cold, the flu, strep then that student should stay out of work until they were feeling better  “a good rule of thumb is that you be symptom free for 24 hours”.  I added that I am happy to give them hours later when they were feeling better to make up the lost time and money, if they wanted it.

I don’t delude myself into thinking that I am going to completely change practices of people coming to work sick with these policies, lectures, and emails on the cons of coming to work sick – I do, however, hope that I’m educating a small set of people to be at least a little more sensitive to the role of the individual in maintaining a safe and healthy workplace.  Also, I’m hoping that I can make them a bit more aware of the fallacy of assuming that general underlying good health is the universal standard – i.e. there are people around them who are not generally well and for whom the application of that fallacy can create significant hardship.  And I hope that they take this sensitivity and awareness out into the world where it can be a few drops in a bucket that desperately needs filling.

You oughta be in pictures

ER visit this week…my first ever albuterol treatment and shot of Solu-Medrol.  That is a story for another post maybe – the short version is another trick.  I am still having some chest pain and shortness of breath, although my lungs sound and look clear and my EKG is normal.  Pleurisy from dehydration is the ER doc’s hypothesis, follow up with primary care.  Which I did, today.  And started feeling super shitty in his office.  Did the flush and faint thing.  As in I get flushed and I feel faint, I didn’t actually faint today.  “Have you fainted recently?” the endocrinologist I saw last month asked.  “No.  Because I know to lay down, eat, drink, and cool myself off now.”

Which is what we did in the doc’s office today.  Blood sugar was a bit low, 84, I got super hot, and my blood pressure dropped from 116 over something in the 60s to 90 over something in the 50s  Not massive but then we didn’t keep me upright for long enough for the big drop to set in.

While we were pondering what the fuck is going on, I showed my doc a “montage” of me in various stages of flush/no flush.  I explained that this montage was prompted by the endocrinologists inquiry of “well what do you look like when you flush? is it all over red? (to me)  What does she look like?  (to my husband)”  and my response “you know, next time I’ll take pictures.  Primary care asked me to email the pictures to him.  It’s quite a gallery of “things that turn red on me” that we’re building here, still with no answer but at least there’s documentation…which is important since I also just dropped off my work accommodation forms.  More on that later too, if I can stand to discuss it.

Anyhow, here’s the cropped version of some of the pics.  Now I can say with authority “what I look like when it happens is THIS”.

three images of the left side of a woman's face in various stages of flushing.

Hot, less hot, not hot.

The caption refers to how I felt, not how I looked.  I think that how I looked correlates pretty well in terms of intensity and coverage of red splotchy nastiness.