following up

Saw my primary care doc today.  We followed up.  Mostly on thyroid but I feel I should mention things like having lost 10 lbs since early July and that the overheating/flushing has ramped up again.  And that I won’t see the fussy little GI doc again.

A good appointment.  I wish I could access my labs online (he’s working on that) because it would save him time.  Too many times in an appointment, he says “oh did we get that lab and what was it” and starts the search through my now shockingly large record.  It adds onto an already lengthy appointment and it makes me feel bad.  I would look this shit up in advance and bring a table.  Possibly a chart even.  Like I said, he’s working on it.  He did what he could on his end, now Quest just needs to play nice online and let me see the things.  He told one of the nurses “hey I think I figured out how to let patients see their results online!” all excitedly.  She countered with “Yeah, I’m not sure we should have that for everyone…there are some people who would call if they were one hundreth of a point high or low,”  I piped up with “I promise I won’t do that.” She said “no, I wasn’t thinking of you.  Some people just don’t have good reasoning skills…”

I suppose not.

Anyhow, here’s a summary of Dr. Wellintentioned’s note (which he sends patients away with, which I think is a fantastic idea):

text from doctor's summary of visit, labs. If you want the specifics, please write in my comment section and I will email you with the text.

I know what about 3/4 of those labs are…the rest? No idea.

I had wanted to ask him about ADA accommodation forms, but I figured we were running late anyhow and this is probably something I can ask the nurse (based on my experiences with FMLA for surgery).  So I asked on my way out.  Here’s how I put it:

“I’m thinking of asking for some accommodations at work.  It’s nothing major, and I wouldn’t need to ask for them if they weren’t be kind of jerks about things.  But I looked at the form they want the doctor to fill out and the are awful.  Is there anything I can do to make the process easier on you guys?”  She said “Yes.  Bring two forms.  One, you should fill out.  The other, leave blank.  We can look over the filled out one, see what you need and asked for and if we agree with it.”

This is incredibly sensible and I am glad I asked.

The only difficult part of my appointment, aside from feeling like I am always taking up way too much of this man’s time, was the part where I tried to get a sense of how to talk to Dr. ENT.  See, I’m a little gun shy after the fussy GI doc and his inquisitor bed-side manner.  I don’t want another dismissal, especially not of suspicious lumps in my thyroid which I personally am a bit uneasy about.  I am not someone who thinks “oh my god something’s wrong, I must have CANCER”.  I’m really not. In fact, if this did turn out to be cancer I’d be shocked.  I’ve been sort of figuring if it turned out to be anything diagnosable, it would be autoimmune and/or endocrine (of the itis, not oma) fuckery since that shit runs in my family and I know it can be tricky.  So back to cancer and ENT and asking about talking to him.  It can be an awkward thing to say to a nice doctor “but they aren’t all like you, some of them, who may be your friends or at least respected colleagues, are assholes,”  especially when he’s the one who referred you to said asshole.  But we got through it, and I’m glad we talked about it.

I feel like I should send him and his staff something nice, but what do you send?  Flowers?  “Thanks for being amazing” seems diminished and trite when folded neatly into a card.  How amazing this practice is should be spelled out in sky writing or sung by a choir or something.

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hard to swallow

scale image of pill camera used in capsule endoscopy vs. U.S. nickel

PillCam...hey I probably can choke that down.

Down the hatch Thursday. On the plus side, the capsule endoscopy prep is Mag-citrate and not that horrible gallon of liquid plastic crap.  On the down side, I have to do clear liquids “after breakfast” Wednesday. Ha, well that’ll be coffee then clear liquids for the rest of the day because, on the advice of the NP at my last GI doc’s office, I don’t eat breakfast.

And speaking of things to swallow, I had a big helping of familiar but difficult disappointment today, fortunately there was some compassion to wash it down:  I had my follow up/sick visit (nearly all visits are sick visits for me) with my primary care.  Nothing conclusive.  Abnormal fecal fat.  Low BUN.  As reported earlier, the blood cortisol was a little on the low end but still in normal.  24 hour urine was all good.  I asked “what’s low BUN mean?” and he said he really wants that fluid deprivation test the nephrologist ordered.  “It might be diabetes insipidous ‘light’.”  Which is exactly what the nephrologist wanted to rule out.  My PCP asked how the specialists were.  “Were they all ok?  Do you feel like any of them need to be corrected or put back on track for what I sent you to them for?”  “I need to know – it’s my job to coordinate this for you,” he added when I sort of pissed around on whether they all were doing what they were supposed to and how I liked them.  Ok, unpacking that, what I said was “I don’t know.  I think they were ok – I tend to judge doctors more on the follow through, as in how they do if and when tests for the obvious stuff come back negative or equivocal.

Ok, they all seemed decent.  Cardiology was best – she was addressing the hypotension.  Hadn’t gotten the tilt table test, he’s going to make sure she got the results.  I told him that my impression was that endocrine took a sort of a “let’s wait and see”, i.e., it seemed EndoDoc wants to see if what and how I eat is setting off my blood sugar and if that’s what’s making me feel shitty.  “Yes, but I wanted him to look at why you’re hypoglycemic,” my PCP said.

I told the PCP that the nephrologist seemed a little aspergers-y and that I thought he was paying a lot of attention to the lyme disease – which I don’t like, but maybe that’s not reasonable of me.  The PCP explained that Lyme disease can have implications for kidney function.  Ok, I guess I missed that.  I do remember that the nephrologist mentioned something about that.  I guess when doctors start talking lyme sequelae, my brain seizes up.   I mean I sort of heard it when the nephrologist told me that lyme can do something to your kidneys or fluid processing….I think my brain just loaded and ran the scrip I heard so often from my last PCP in CT, who I’d go to when some new thing was rearing its head or when some old thing had gotten worse and who would do a couple of tests, refer me to a naturopath or a questionable specialist, then declare me “post lyme chronic fatigue”-y or “chronic lyme”-y if nothing came back remarkable, which unfortunately went with her then writing me and whatever the symptom was off.  This is how I come to have a chronic rash, for example.  Or the cycling intense fatigue, fevers, malaise (boy that’s a loaded term…I’ll write about it some time) that have been in high gear since early Spring 2009.

BTW, this was the huge fucked up history that poor 1st year resident had to slog through on Friday.  That history plus the bristly prickliness I have about how it and everything that’s come since was all handled by too many of my primary cares, including the one who hemmed and hawed on my initial lyme diagnosis despite this rash.

large E.M. rash on torso, lyme disease diagnosed.  ELISA equivocal, western blot positive IgG and IgM but not CDC criteria

my big fat lyme rash, Summer 2002

At some point in my visit today, my current PCP also apologized for all the tests and appointments.  I told him I knew what I was signing up for – but that this is why I hadn’t rushed off to have that fluid deprivation test done.

Back to the results of what’s been done so far.  In addition to the abnormal fecal fat, normal 24 hour urine creatinine and cortisol, as usual, some vitamin levels came back crappy.  D is low (again) and a couple of Bs were on the very low end of the range.  My magnesium could be better, but it’s in range.  Well, we’ll see how the capsule endoscopy goes.  And the fluid thing.  There are a few things pending, but they aren’t really make or break sorts of things – a couple of repeats and urine electrolytes.  I see that look on his face – the “I’m doing everything I can think of but fuck if I know what’s going on with you” look, and I’m spooked.  He’s not given me reason to think that he’s going to wash his hands of me, get all dismissive of what’s up (e.g. no vitamin therapy, no low dose corticosteroid) but still I felt that sinking feeling.

I’m reassuring myself by reminding myself (with the help of my husband) that if in the end my PCP can coordinate my care, thoroughly investigate any new and enduring symptoms, and treat the chronic stuff as it flairs, he’ll be head and shoulders above most of the doctors I’ve seen in my life, and whole body lengths above nearly all of the doctors I’ve seen in the last 10 years.  Trying to keep my hopes up here.  Realistically up.

Ah, and as for the vertigo/imbalance thing:  He referred me to a neurologist, whom I’ll see soon and locally I hope.  “The dysequilibrium you described does not sound like vertigo” he wrote in his note (which he gives me a copy of at the end of the appointment – I said I liked this guy, right?)  We discussed that it could be migraine in overdrive, in which case I need something more than a prophylactic med (elavil) for it.  And that alone warrants neurology, or as the PCP said “What do I know?  I’m just a bug guy.”  Hardly, but I get his point.

So all that’s a lot to swallow.  But as I mentioned, I knew what I signed up for and it’s nice to have some compassion to wash it down with.

done, for now

Well I’m all done with the three specialists that my primary care referred me to.  Liked two, disliked one.  The cardiologist was nice, I blogged about my appointment with her already.  The nephrologist was, well, I blogged about that too.   And yesterday was the endocrine appointment.  The attending was decent.  Moving slowly, he wants me to keep a food diary and record my symptoms and blood sugar.  Not surprising.  Last night, my husband and I went looking to see if “there’s an app for that”.  Yep.  The ones we found were more for exercise/weight control type stuff, but I think one can be adapted to suit my needs.  Exportable data for Excel format too, which is neat.  Follow up with him in 6 weeks, at which point he’ll decide if it’s worth putting me through tests that actually kind of suck (my AM cortisol was a wee bit low – what they do beyond that involves putting your adrenal glands through a probably unpleasant work out, from what I understand).  So yeah, I’m ok going slower on that.

What was remarkable about the endocrine appointment was the very good experience with the 1st year resident at the B.A.T.H. endocrinology clinic who took my history.  For a guy who’s been a practicing physician for at most one month, he did a stellar job.  Hell, he’d rank as stellar when put up against some people I know who’ve been practicing for 20+ years.  I’m planning to write to the folks at his residency program to tell them this (maybe minus the dig about the 20+ year people).  I was a little concerned that praising a resident for being able to respectfully and compassionately navigating a complex history from a historically, um, high maintenance patient would set him up to be seen as somehow too “squishy” for medicine.  That concern is somewhat influenced by what I saw in grad school – PhD students who cared about teaching and students sometimes found that care used against them as a reason for why they were not where the faculty thought they should be in things like research and publications.  This was a seriously raw deal, since most PhD students are chronically underperforming in those regards when there is no research money to be had and only teaching stipends, but this didn’t seem to deter some of the more obnoxious faculty.  I also was thinking of my experiences working as a unit secretary, which admittedly were usually on surgical units and thus may not transfer well to internal medicine residency programs.  Before you shake your head and tsk tsk, keep in mind that I did marry one of those bastards so it’s not like I went in with prejudices, i.e. thinking all surgeons and surgical residents are assholes.  And I still don’t think that.  But I had plenty of opportunity to see the culture, to see nice residents bullied for being too nice, to see women on the orthopedic surgery service teased and hazed, to see the bitterness that can come out when idealism-based traits clash with the sometimes very cruel realities of residency.

So what did I do?  I asked an MD, because I figured he’d have a decent idea about whether the culture of an internal medicine residency program would be receptive to this sort of feedback.  And I’ll also be asking my primary when I see him next.  Which brings me to…

Thursday night, I had an appointment with my therapist (psych).  We spent a big chunk of time talking about how shitty I’ve felt this entire month.  The dizzy/vertigo/off balance thing has plagued me nearly every day of July.  How horrible!  Truly.  It sucks.  I had been struggling with whether to call my primary and say “hey I know I’ve got all these appointments and tests and shit to deal with the intermediate-long standing crap that’s up but right now, I’m having this new thing and can you help me?”  My therapist thought that was fine to do and encouraged it.  We talked about why I was struggling with this (afraid I’ll be “that patient” who’s always got a new complaint and what that means for me, afraid there will be nothing they can do) and after going over some “how can I say this/what’s the best way to express what is going on and what I want from them?” scenarios, I decided I’d call the next day.  On my way out of the therapist’s office, literally, I was halfway down the hall, my phone rang.  It was my primary care’s office. “We’d like to see you,” said the nurse.  “Wow, I was just going to call you tomorrow!”  “Well great minds think alike,” she said.  “What time do you have next week?”   So I have an appointment on Monday.  Here’s hoping that it’s not just “we looked at everything so far and there’s nothing new to say or do.  You’re just fucked.  Have a nice life.”  They haven’t given me any reason to think that they would take the attitude expressed in that last part, but many other doctors have.  And the first part, well that’s just my chronic worry about all this rotten health stuff.

Tonight, I have a sleep study.  And Thursday, I have the capsule endoscopy.  And then maybe next weekend, the fluid deprivation test that the nephrologist ordered – maybe.  And then maybe I’ll be done for now, maybe no more filling up jugs with pee or passing out on tables for a little bit while I celebrate my husband’s 30th birthday (yes, he’s a young’un).  Wouldn’t that be nice?  Ah well, this is what I signed up for when I said “work me up”.  Let’s hope it leads to some answers and/or treatments.

back from the doctor, or “salt, salt, and more salt”

A woman sits in a doctor’s office on a hot day.  It’s been hot for nearly two weeks without much break – a day here and there where it goes below 90.  She gives her history which includes that she’s been feeling dizzy, off balance, for nearly all of the last 2 weeks (give or take a day here and a few hours there) when she overdid it in the heat the Friday before the July 4th.  She’s not sure that the two are related, but that was the only precipitating factor she can think of.  Migraines don’t last this long and she’s not having tinnitus or hearing loss. She doesn’t mention all this stuff about the migraines and the tinnitus because then she’d sound like a know it all Mrs. Snottypants and possibly annoy the doctor.  After she’s been talking for a minute or so, she feels unwell.  Beads of sweat form on her upper lip, she hunches forward instinctively – not in a sudden movement but a slow lean down until her torso is almost but not quite parallel to her thighs.  God only knows how many times she’s adopted this pose without anyone remarking on it.  She assumes that if anyone notices it, they assume she simply has horrible posture and is perhaps a little odd.  The doctor says “are you ok?” “Oh I just feel a little, uh, sick” she says.

And thus began my visit with the cardiologist today.  What ensued was her checking my blood pressure then getting my ass promptly up on the table, having me lay down, and calling for “anything salty” to the staff.  lol.  So I spent most of the rest of the history lying on my back eating some kind of super salty pretzel and chip snack mix.  And drinking two cups of ice cold water quickly (“there’s a reflex that is triggered by that – it gets your blood pressure up” she told me later).

So…I need salt.  She needs my tilt table results (those bastards still haven’t handed over the data!).  It sounds like I have “neurocardiogenic syncope” (I’m pretty sure that’s could be seen as a very fancy way of saying “you faint”).  I have enough crap/symptoms to make her want another echo (I showed her the two I’d had previously, 2006 and 2009), and when my “blood pressure stabilizes” a stress test.  For now it’s salt, compression hose, and a vasoconstrictor, “if you don’t mind that we try a medication,” she added.  I was rather taken aback by this, in a good way.illustration of person putting on compression hose.  Image from the Mayo Clinic.

“Will that make me feel worse at all?”  “I don’t think so, it shouldn’t” she told me.  “I’m mostly concerned because I get migraines.  Is a vasoconstrictor ok to take with migraines?” “Oh yes, actually, a lot of the migraine meds are vasoconstrictors” (oh now she’s excited) “this might work out pretty good for you.  Let’s start on a very low dose, and if you don’t feel well, stop taking it.”  Ok, so I like her.  I may not like where we end up, but I like her approach.

The cardiologist wants to see me in a month to see if I’m doing better on the drug and with hose.  “I know wearing compression hose in this heat would be hard,” she told me.  Hey, it was good of her to think of it.  I told her I’d try wearing them at work since I keep my office very cold.  We’ll see what we can do.  This is me being a good patient.  I have no idea if it will work but I figure hose can’t hurt….um, right?

“What’s going on?”

A friend recently asked this with regards to the health stuff.  She’s been a great friend through this.  She’s busy with her kids and her life several states away, but when we talk about my health problems, she listens and she asks questions and she expresses concern, support, and empathy.  I am so grateful for this.  Especially today, since it contrasts so sharply with some family of mine – specifically, my sister.

My sister knows I had my big follow up appointment on Thursday.  She called me Thursday and Friday, both times leaving a long voicemail message all about her.  Ok, whatever, she’s got her own stuff going on (looking for a new job to escape her PI who has modified the animal research protocols in her lab in bad, bad ways and who is truly an awful boss).  My sister and I talked today and we spent about 3 minutes out of the 45 minute phone call talking about my health stuff and then the rest was all about her.  And not anything new about her and her job search, but a replaying of the top ten greatest hits of what I call “fear and loathing in the biomedical research job hunt”.  She’s massively PTSD from all the family crap, and she has a tendency towards obsessive behaviors.  This was not a fun conversation.  Her transition from hearing about my medical news to the many minutes too long rehashing of the same old shit about her was quite abrupt:  “So, I don’t know if I told you but…” and then on to the thing she has told me nonstop for the last week.

Ugh.  Draining.  I’d understand if I was always unloading on her about my health problems, but truly I am not.  Part of why I blog so much on this shit is that aside from my husband, I don’t have anyone else in my day to day life that I do talk to about it.  Not honestly and unguardedly at least.  Privacy issues, stigma, and the emotional nature of dealing with chronic, disruptive health problems all keep me skimming the surface most of the time in my day to day.  I am very conscious of not wanting to “go on” about this stuff with people.  But I thought at least that my sister would give a shit about the outcome of all that testing.

Sometimes I’m such a blithering optimist.

So here’s what I wrote to my friend who asked “What’s going on?”  The topic started out because I asked if she had a suggestion on glucose meters (her husband’s got type 1 diabetes).  I figure this is a decent update for the blog too.

I got a new doctor who is doing an exceptionally thorough work up. So…had a glucose tolerance test and I’m hypoglycemic. I’ve been dizzy all damned week so he wants me to get a glucose meter to see if the dizzies go with blood sugar. I did a thing called a “tilt table test” a few weeks ago too. It’s meant to test autonomic function, which I guess in this case is really just about looking to see if your nervous system and your vascular system talk to each other right. And I failed it. They put you on a table and hook you up to a heart and BP monitor and you do all sorts of strange breathing exercises. Then they tip you upright to about 60 to 70 degrees so you’re basically “standing” without having gotten up and with most of your weight being borne by the table you’re strapped to. If you nervous system and your vascular system coordinate properly, you might get a little lightheaded but you don’t pass out. I passed out.

This wins me a cardiology consult and a nephrology consult (kidney). Cardio is to make sure it’s not an arrhythmia which has me feeling like shit all the time and which would account for the whole passing out/shittty vascular response I showed on the tilt table. Also, the doc heard a mitral valve murmur when I was in for my follow up (with dizzies).

Nephrology is because I guess I keep testing out as being dehydrated (that whole orthostatic hypotension thing, I stand up but my blood doesn’t) but having low sodium – that plus the feeling like shit plus the passing out on the tilt table might mean my body’s not balancing fluid properly. Apparently nephrologists check that.   Or this nephrologist checks that.  And hey, funny story – the nephrologist was a wee resident I and my sister worked with at the hospital wayyy back in the late 80s/early 90s.  Small world.

And then there’s an endocrine appointment. This is for the hypoglycemia and the feeling shitty.

I also have to pee in a jug for a day and do horrible things with poop and cups and vials and whatnot.

The common element in all of these appointments is the feeling shitty. The new primary care is being remarkably thorough about following the leads, which, while a bit of a pain in the ass to go through is good because I truly do feel fucking shitty and I’ve been dealing with this shit for years now. I’d like to know if there is something that can be identified and treated and he’s the first primary care I’ve had who seems to be interested in leaving no stone unturned before handing me the “well you’re just fucked, I have no answers, enjoy feeling shitty all the time, bye!” answer.

I signed myself up for this. After I discovered my boss was not going to be ok with me having surgery this summer and after I realized how much my (former) primary care largely was not good, I decided to (a) postpone surgery until winter break and (b) spend some time in the meantime finding a new primary care and hopefully getting a handle on some of this feeling shitty all the time shit.

So it’s finger sticks, cups, vials, and jugs for me for the next month or so.

That’s what’s up. And that’s also what happened to your care package that I said I was going to send you before the family road trip west. Once I saw this new primary in June, it was kind of like the staring pistol for a marathon….I had the tilt test and a round of cups and vials the week I was going to get stuff together for you. It ended up a bit of a mess. Sorry. I felt bad. Which is also why you haven’t heard much from me.

glucose meter

I find I’m in the market for one.  Seems the glucose tolerance test was, well, not well tolerated.  Any suggestions for one or words of wisdom/experiences in using them?  We had accuchecks at the two hospitals I worked at but I have no idea if that was for ease of use, accuracy of results, or cost.

Pusher

My boyfriend’s mother is pushing pills at me. Not “drugs”. Just natural, herbal goodness in pill form.

Rather than believe that her own immune system is responsible for the pain and other symptoms she sometimes experiences, she has decided hormones are the culprit. The idea of an autoimmune disease conflicts with elements of a deeply held world view – this is relevant for her by way of contradicting a diagnosis which was made by her doctor and confirmed by a specialist. But the body couldn’t be made to hurt itself like that, she believes.

And so – since I have pains, fevers, rashes, and fatigue; since I’ve mentioned a grandmother with mixed connective tissue disease; since she knows my former primary care was considering an autoimmune diagnosis for me – she has taken to pushing hormone imbalance theories at me and pushing “balancing” pills, teas, and tinctures as the panacea.

I’m not dead set against alternative therapies. However, I am easily rankled by what appears to be a theory based in fallacy and belief which is used to inform not simply self perception and personal choice but imposition on others.