I Hate Having Conversations Like This With a Doctor

At the Doctor's Office

This is a rant. Just being honest up front. I’m frustrated right now. Part of this touches on a new diagnosis I was going to blog about here, because it derives directly from the MTHFR genetics. I promise, I’ll come back to that more fully later, in another post. Right now, this post is about communication.

First some background. Last week I phoned my clinic to make an appointment for chest pain upon exertion, that stopped when exertion stopped. I was instead (quite properly, but frustratingly) sent to the ER, where I spent another 24 hours insisting that I felt FINE before being transferred to the Cardiovascular Center, where I spent ANOTHER 24 hours. Of course, in those circumstances you are poked and prodded, hooked up to various machines that don’t like you, get a bunch of tests, etc. If you are lucky, like I was, you get to come home with some new diagnoses, a bunch of instructions, and maybe an extra temporary hole or two. Being my kind of luck, I was also seriously glutened by the hospital’s glutenfree food, spent a few days feeling horrid and sleeping, and another few days breaking out in hives (front, back, arm, and face). Jolly.

Now, that was the GOOD part! Because every nurse and doctor I spoke with was knowledgeable, competent, courteous, engaged, and compassionate. Most of them were also informative, interested, entertaining and amusing, which was a definite plus. I had interesting conversations with them, and was honored to hear phrases like, “I didn’t know that! Thank you for teaching me about it.” “You’re more special than you think.” “I’m glad I met you.”

I had gone in with chest pain, a classic presentation but not a classic cardiac cause. One positive stress test and one negative cardiac catheterization later, it was clear that it was time to move on to the next step of the differential diagnosis. In the last couple hours before I was discharged, 1 cardiologist, 1 cardiology resident, 1 nurse practitioner, and 1 nurse all at different times looked me in the eyes and said, “You have an appointment coming up with your primary care doctor. It isn’t soon enough. Get them to move it up.” You see why I thought this might actually be important?

By the time I made it home on the day of discharge it was too late and I was too tired to phone the clinic, so the next morning that was the first thing I did. They couldn’t get me in with my primary care provider, but they found an appointment for someone on her team. That’s where I was this morning, and I came home cranky because I was unhappy with how the communication was handled. I’m venting some examples of the communications that bothered me. Pay attention to the pattern of information sources, and the flow of information in the conversation. That’s probably more important than what was actually said. Think of flipping the clinic, and then think again about just how that ought to work.

[NOTE: These are excerpts from a longer conversation, not a complete transcript.]


Cardiac or Not? Anemia or Not?

DR: Looks like they did a good job. [recites list of what I’ve had done medically in the past week] Do you want a referral to a cardiologist for that left bundle branch block? There really isn’t anything they can do, but I can do that.

ME: I think the cardiology people have done what they can for now.

DR: Well, it really isn’t your heart. And you’re not anemic.

ME: Yes, I am.

DR: No, you’re not.

ME: It’s on my active problem list.

DR: It shouldn’t be. Your hemoglobin is fine.

ME: Of course, it is. It’s the serum ferritin that isn’t.

DR: That’s not anemia, that’s low iron. See what I mean? You don’t have anemia.

ME: My hemoglobin is ALWAYS fine.

DR: Then you were never anemic.

ME: Oh, God!

DR: What?!

ME: [deep breath] OK. My hemoglobin is always fine. And I almost died of carbon monoxide poisoning because all the docs thought hemoglobin was all they needed to check.

DR: Your serum ferritin has ranged from 70 to 40 in the past five years.

ME: Yes, but when this started, my serum ferritin was 11. My fingers were gray. My skin was gray. My eyes were gray. My hemoglobin was low normal. And I almost died of carbon monoxide poisoning before someone would check my ferritin and start treating me for anemia.

DR: But you’re not anemic.

ME: I’m not anemic RIGHT NOW.(*)

DR: I don’t know why this is here.

ME: Please. Don’t. Don’t take it out of my diagnosis list.

DR: Well! I didn’t know you have strong feelings about that.

ME: It serves as an alert to my care providers that this is something that needs to be monitored.

(*) [NOTE: Yes, “Anemia is strictly defined as a decrease in red blood cell (RBC) mass.” So technically, on a simple level, he was accurate enough. The idea of what exactly IS “low normal” hemoglobin is something that is pretty hotly debated in the literature, including findings that “low normal” carries its own risks. For example this statement from UpToDate: “Studies in older adults with hemoglobin levels in the “low normal” range according to WHO criteria have linked these levels to declines in performance as well as increased morbidity and mortality.” And then there is the subtlety of what are differences in types of anemia. What I have/had is Anemia of Chronic Disease, which most likely originated with the then undiagnosed celiac disease and was exacerbated by the also then undiagnosed MTHFR deficiency.

“Hemoglobin values will generally reach a low normal range of 9.5–10.5 g/dL and remain there within this moderately low range until the underlying condition is cured. If disease that results in blood loss is present, the person will develop iron deficiency anemia (IDA). ACD and IDA can be distinguished with a serum ferritin test.” Iron Disorders Institute: Anemia of Chronic Disease. http://www.irondisorders.org/anemia-of-chronic-disease

What I never got a chance to say in this conversation was that the doc who diagnosed me with anemia (assistant department chair of family medicine at the time) told me that in long-standing severe anemia the body throws every scrap of iron it can find into the hemoglobin in an attempt to keep the body alive, and that a chronic reading of low hemoglobin can be a sign of severe anemia. The docs who treated my anemia over several years, getting my ferritin up to that 40-70 range (out of a normal target of 100), are the ones who put in the diagnostic code and active problem list identifications. Unless he has a better and more appropriate code to enter to describe this problem, I personally feel safer leaving it as it was found.

Yes, I’m a bit on the defensive here. It’s a personal safety issue, and feeling safe. I discovered in the hospital that someone had deleted from my medical record my most serious drug allergy, and that scared me.]


New diagnosis

ME: And they added a new diagnosis.

DR: I don’t see anything new.

ME: They added “with homocystinuria” to my MTHFR deficiency diagnosis.

DR: I don’t see that in the computer.

ME: [rummages in bag, pulls out discharge folder from hospital, ruffles through papers, finds the right one] See here, on page three of the hospital encounter description?

DR: That’s just your active problem list.

ME: But this line changed.

DR: Hunh. I don’t know what that is. I don’t know who added that.

ME: Dr. L took the patient history about it, so I’m guessing it was him.

DR: I don’t even know how you would diagnose that.

ME: I did some searching online. The screening questions he asked came directly from the NIH Genetic Home Reference.

DR: I don’t know what that is.

ME: It’s from NIH and National Library of Medicine.


Differential diagnosis

ME: Homocystinuria is associated with embolism and liver disease. I’m already on baby aspirin, but I’m not sure anyone has checked my homocysteine levels. And liver disease was on the differential they mentioned in the hospital.

DR: What do you mean?

ME: The cardiac cath can only check the large vessels. In women, it isn’t unusual for the coronary artery disease to start in the microvessels. But that’s really hard to diagnose.

DR: [Nods.]

ME: The easiest way to diagnose CAD in microvessels is to rule out everything else. In the hospital they ruled out heart and kidney, and liver was another thing I heard them mention. I don’t know what else there should be.

DR: Well, they didn’t check your homocysteine levels, but they did check an indicator for them a year ago, so that’s fine.

ME: I don’t know the last time anyone checked my liver function. There is a blood test for that, isn’t there?

DR: Yes. Hmmm. No one has run that test in five years. Hmmm. OK, I can order that.


Physical

[COMMENT: Pay attention. This is where something started to go right, sort of.]

DR: So, how’s that incision?

ME: It’s fine. I had a little problem with it yesterday, but it’s fine now.

DR: Let’s listen to your heart and lungs. Unhunh. Lay back, please. Does that hurt? That? There? Please sit up. Hmmmm. Do you have asthma?

ME: Yes. Well, I did. After the carbon monoxide poisoning, my lungs were badly scarred.

DR: But it went away?

ME: Yes, the scar tissue shrank as it healed.

DR: Do you use an inhaler?

ME: No, I can’t. I’m allergic to them.

DR: What happens?

ME: I pass out.

DR: OH! Well, hmmm. I’m going to request a pulmonary function test, and we’ll mention that. So you don’t use an inhaler?

ME: I used to use Intal, but they quit making it. I stockpiled a couple, but I found the mechanism quit working after a while, even if there was spray left.

DR: Well, you can follow up on that with your regular doctor.


DISCUSSION

That was pretty much the end of the conversation. And it doesn’t seem quite as awful now that I’ve written it down, but it was very frustrating at the time. Why? The doc listened to me about some things and not others, didn’t seem interested in doing a differential diagnosis, and the impression I came away with was that this doctor didn’t take the other doctors or me seriously. I thought the argument about anemia was entirely unnecessary, and it alarmed me and undermined my trust in the doctor. He could have explained which definition of anemia he was using, and that would have helped, and perhaps opened the conversation to some of the other aspects of anemia that concern me. Since it wasn’t relevant to today’s meeting purpose, it only served to alarm me.

The information and explanations flowed mainly from me to him. He admitted not knowing certain things, but didn’t say he was interested or willing to learn or find out. Still, he didn’t shut me down when I tried to explain. He did listen and integrate the information. I was alarmed again that he wanted to send me right back to the docs I had just left, and I felt I had to work so hard to get him pointed in the direction of continuing the differential diagnosis process. After leaving, in doing more reading, I discovered that testing pulmonary function is indeed a logical next step for differential diagnosis of atypical chest pain, but that wasn’t something he discussed or explained, so I had the impression at the time that he was sidetracked from the purpose of the visit.

The visit wasn’t a total waste, and actually did achieve useful productive goals. I’m pleased to have the pulmonary function test and the liver function test in progress. Something will move forward while waiting for my next appointment with my primary doc over a month from now. It could have been a great deal easier and more clear. I could have gone away AWARE that he was genuinely trying to help, instead of feeling alarmed and distrustful. That would have been nice. Deep down, I think it worried me that I was providing medical information that he didn’t know, and he wasn’t giving me information that I didn’t already know. He wasn’t demonstrating his expertise. The dynamic around the information flow and sharing in these conversation snippets was patient-driven, yes, but imbalanced. Maybe I’m just being nitpicky?

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Blur

Muruga's saint, blurred

Life has been a blur lately. I spent the last part of the summer frantically trying to finish various projects associated with our home renovation. It was REALLY frantic, so I haven’t been here much. That doesn’t mean, however, that nothing was happening on the PGEN front. More puzzles and mazes being negotiated, more clues leading to quirks in the path.

Remember when I first started this, and talked about being an MTHFR carrier? I’m circling back to that. When I first looked into it the gist of the overviews I found on the topic were along the lines of, “Meh, not such a big deal. Don’t worry about it.” Folk in the PatientsLikeMe forum were talking about it, though, and seemed more concerned. Frankly, I thought they were worrying over nothing, and initially didn’t give it a second thought. Then one day I saw a comment about MTHFR deficiency being associated with autism, which runs in my family. And depression. And osteoporosis. And anemia. And … well, you get the idea. Basically, it seems to be associated with as many conditions as celiac disease, and an equally broad range of conditions. Oh, and by the way, it is also associated with celiac. Hmmm.

I thought, well, the other stuff I read said it wasn’t a big deal, so these web sites much be just flakey folks making things up. Let me go check Pubmed, just to verify. I tried a number of different searches. MTHFR is pretty wild! It is being researched in many different areas as potentially significant. I then thought, wow, it seems to almost be a fad in research right now. Well, not exactly.

Pubmed results for MTHFR by year (3 in 1990, steady rise to mid 400s in 2011)

This chart shows how many articles were listed in Pubmed for MTHFR by year, for the past twenty years. You see very little to virtually no interest in MTHFR twenty years ago, according to the publication rates in the professional biomedical literature, rising to a fairly steady number of publications in the mid-400s for the past five years or so. There is no big spike, just a growing awareness along the lines of, hmmm, this might be something rather interesting.

To make a long story short, I’ve started to look into it more closely. Just as with some other elements of the genomics scans, the information I’m learning is causing me to go back and look at some of my personal stories through a different lens.

One of the first questions I asked myself was about the core “folate deficiency” bit. Should I be supplementing with folate or folic acid? I took a look for what foods are naturally high in folate. OH MY GOODNESS!!! Darned if the list isn’t comprised of foods I usually crave. This includes foods my docs have told me I eat too much! But since I’m craving them, they get eaten.

I started thinking back, and suddenly put two and two together. The first time in my life that I felt absolutely wonderful was when I was pregnant for the first time. I had always attributed this to actually being pregnant, but you know what? When a young woman is pregnant, doctors prescribe pregnancy vitamins, which include folic acid. That was the first time in my life I had folic acid. What if … oh, wow, what if the reason I felt so incredible was because of the vitamins, not because I was pregnant? I had the same kind of “wow, see how great I feel” reaction when I started eating lots of quinoa, which is a folate rich food.

When I figured this out, I was tempted to run out and just buy pregnancy vitamins or folic acid vitamins. Dutifully, I checked first if it was safe to self-prescribe. Sigh. They recommend talking with a doc first and having your B12 levels checked. So, now I’m making that long-put-off appointment with my new doctor. I’m trying to make sense of this, but it seems to all be getting more confused rather than more clear. Blurred. 😉