What it means to have a respectful doctor

August 15, 2014

I learned a while back that I have to be an educated patient. It’s the only way I’ll ever see any improvement in my health.

My health is too important to just assume that every doctor always knows what’s best for my specific case. After all, my endocrinologist may know a bit thyroid issues but really specialize in something else. My rheumatologist might know plenty about rheumatoid arthritis but nothing about my unlabeled connective tissue disease. Or they may know a lot about my conditions, but not enough about the other specialties to figure out how they all connect. No matter how you look at it, I have to be educated.

Unfortunately, some doctors don’t like this. They don’t want to take the time to answer questions. They don’t like being challenged. Most of us have experienced these kinds of doctors.

But then there are the others.

There are the doctors who appreciate my effort. They like talking to a knowledgeable patient. They take the time to answer questions and explain terminology. They maybe disagree with my assessment, but they don’t dismiss it out of hand. They consider it.

Today I saw one of those doctors. I haven’t seen many over the years, but he’s one of them. Dr. T is hard to see. He’s one of the top in his field, so there are long waits to see him. He was looking at charts of my test results today. Actually, three people were looking at the charts: Dr. T, Dr. D who works with him, and a medical student (it’s a teaching hospital, so this happens a lot.) I quietly stood behind them to see the charts, too. Suddenly Dr. T turned to my empty chair, saw me standing behind him, and gestured me over – he wanted me to see my charts! I was shocked, but then he did something that completely stunned me – without being asked, he began to explain the charts. I didn’t know how to read them, and I very much appreciated this explanation.

A little while later Dr. T and Dr. D mumbled to each other. Then they began to explain the medication they wanted me to take and exactly why they wanted me to take it. Unlike doctors who just shove a patient out the door with a prescription, these two wanted me to understand the plan. I explained my discomfort with the potential side effects and Dr. T got slightly impatient. He said that if I want to treat this issue, none of the options are great and I’ll have to make a choice. I agreed, and pointed out that my health is my top priority and that’s exactly why I was questioning everything, because I wanted to be able to make an informed decision. He no only supported me by answering all of my questions, but he even seemed to respect my position.

I left that appointment feeling good about our plan for figuring out the cause of my new symptoms. I felt listened to and respected. I felt like I was a part of the plan for taking care of my body. But mostly I felt that I had an ally, someone who would be there when I needed help and would do his best to provide that help. And isn’t that how we should always feel about our doctors?

Have you ever had one of these doctors? Have most of your doctors been this way? What has your experience been? I’d love to hear about your experiences in the comments!

17 Comments | Educating, Expectations, Healthcare, Medication, Raves | Tagged: , | Permalink
Posted by chronicrants

Are doctors actually helpful?

August 4, 2014

A friend started medical school today. I bit my tongue. I wanted so badly to ask what he actually hopes to accomplish by being a doctor. Does he really think he’ll help people? Because I’m not so sure.

Ok, to be fair, some doctors are helpful. If I had cancer, I’d probably want to see a doctor. Ditto if I had a heart attack. Some of them are useful. Just not the ones I’ve seen.

The other day I posted about doing some genetic testing. I wanted to see if I had a mutation on the MTHFR gene. I had asked my primary care doctor for the test, but he said they prefer to run an MMA test to check enzyme levels. If that test is abnormal, then they run the other. This sounds logical except for 1 glaring fact: the MTHFR mutation doesn’t reduce the number of enzymes, it reduces their efficacy! So I have the right number of enzymes, but they only function at about 30% of what they should! So the MMA test was normal. But the test I chose to pay for and run on my own shows that I have the mutation afterall (the A1298C mutation, for those who are interested) and it’s homozygous, meaning I have the mutation from both parents. If I had listened to my doctor, I’d never have known.

Last week I posted about my frustrations with indicative lab results from years ago that I just discovered. Of course, that was just one example. I have found many lab tests that showed important keys to my health problems and that, if they’d been addressed, could have helped to prevent my current level of poor health. The doctors knew enough to run the tests, but not to address the results!

There was the doctor who told me that there was nothing to be done for my pain, that I’d seen plenty of good doctors, and that I should just learn to live with it and stop seeking medical treatment. I was 19. And I stupidly took his advice for several years.

There was the doctor who told me I wasn’t lactose intolerant. He didn’t suggest doing anything to help me with my constant digestive problems, he just said that I wasn’t lactose intolerant. I was young and intimidated and scared and didn’t push him. Going through medical records last night, I found the note from the specialist he had consulted. She had suggested further testing and potential causes for my problems. He never did any of those tests or followed up in any way. It took another 12 years, 3 gastroenterologists, 1 naturopath, and a lot of my own research to figure out I had leaky gut, Celiac Disease, and IBS.

A pediatric surgeon told me that the Olympic gymnasts (the Olympics were currently taking place) managed to compete with worse pain than I had so I shouldn’t be so upset by it. I was 16. I drove right to my best friend’s house and cried.\

When my fatigue stuck around long after my mono was gone, my doctor kept telling me to give it more time. She kept insisting I’d get better in a few more months. I never did. She never once considered that the mono virus triggered an autoimmune condition, even though that’s a well known possibility. It took another 10 years before I figured out that connection.

I can’t count how many times I asked for tests that doctors said were unnecessary, only to later find out that I did indeed have the things I wanted to test for.

I told a doctor that I felt instinctively that my wrist pain, back pain, and knee pain were all related. He insisted I was wrong. It took many years to find out I was right.

The doctor who first diagnosed me with an autoimmune condition ordered an ANA test. Then he flipped through the huge stack of medical records I had given him and found two previous ANA tests that were both high. They weren’t high enough for a diagnosis, but they were high enough that they should have been flagged. They weren’t. I should have been retested regularly. I wasn’t. I have no idea if more than those two were run. Of course, his test came back incredibly high and I got the diagnosis that week. I’d had symptoms for 11 years. That was already more than 11 years ago, and I’m still getting more diagnoses.

*****

Ok, you’re probably wondering what the point of this post is. I started with something else in mind and it has turned into a rant, and I’m ok with that. These days I’m feeling unusually frustrated and angry about my past health care. So I’m letting it out. And I hope that maybe this somehow falls into the hands of a medical school curriculum designer who can start making the necessary changes to doctors’ training. Because some of us don’t fall into the neat boxes that doctors are trained to search out. Some of us have messy health problems. And we deserve the same great care as the people who fall into those neat boxes.

There are some fantastic doctors out there. I’ve had one or two of them. And I hope my friend becomes another one. But I remain weary. I see doctors because I must. I see doctors because I want my lab tests paid for by insurance, because I need prescriptions and would rather get them legally, and because occasionally they are able to help me with a simpler problem. But I’m continuing to do my own research. I’m continuing to be vigilant. And I’m continuing to be distrustful. And after reading just a few of the many ways I’ve been screwed over, can you blame me?

Please add your own story in the comments. Vent a little and get it out of your system!

8 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Limitations, Medication, Pain, Rants, Symptoms | Tagged: , | Permalink
Posted by chronicrants

The what-ifs of old medical records

July 29, 2014

I suppose it’s only human nature to wonder if there was a chance I could have been diagnosed sooner. But when the test results from years ago are staring me in the face, I don’t have to wonder any more.

A couple years ago I began recording all of my lab test results in a spreadsheet. It’s something I’d wanted to do for years, and I finally did it. Now, I can easily sort or filter to see all of my tests from 2013, all of my TSH tests, all of my cholesterol 10-4-2012 10-59-49 AMresults, etc. Unfortuantely, I was only recording everything from the end of 2012 and forward.

Over the years, I’ve collected quite a pile of medical records. Each new envelope was added to my desk drawer. As I began to fill up a second drawer, I realized I needed to get back that prime space. I decided to box up all of my records and store the box away in a corner or a in closet.

Now that I have a spreadsheet of lab results, it feels wasteful to put records in a box without reviewing them first. So as I add each record to the box, I look at it. If there’s anything relevant (or at least, currently relevant to my untrained eye) then I add that to my spreadsheet. I’ve been recording lab results, but I’m also recording other useful information, like names of doctors. I’ve forgotten many of them over the years, and one day it might be useful to know which doctors I’ve seen. Almost as useful as knowing my old test results!

The first time I was diagnosed with an autoimmune condition was when I was 23. At that point, I’d had symptoms for 11 years. I was diagnosed based on a high ANA (anti-nuclear antibody) test. The doctor I saw wasn’t in the same network as all IMG_20140729_220919of the previous doctors, so the only records he had were the stack I handed him. He didn’t see anything on a computer or talk to anyone. That’s probably why he was able to start fresh. He ran the test. But when he looked back through my records, he saw two previous ANA tests that were high. They weren’t high enough for a diagnosis, but they were high enough that someone should have been keeping an eye on them. And yet no one ever mentioned it to me! So what else was missed?

As I’ve been looking at my records, it’s horrifying to see the many missed opportunities. But last night really got me. I was glancing at some test results from 2007, passing over the normal blood counts, mentally noting the high triglycerides (which I’d had for many years, so that was no surprise,) when I noticed two shocking test results.

The first shocking result was my TSH. It was tested 4 times in 2007. Each test was done at the same lab, with a normal range of 0.270-4.20. The normal range is different now, but that was what the lab used back then. My results were, in order: 4.890, < 0.014, 1.030, 3.860. Yikes! That second number was at a dangerously low level, but no one ever mentioned that to me. They probably adjusted my medication after the first test, which was high, and my TSH dropped too much. The second test was way too low, so they adjusted it again. The third test was done just a month after the second, so it was too soon to know anything. The last one was within the “normal” range, but for someone with hypothyroid it was too high. Given these results, it’s shocking I wasn’t even sicker than I already was! And it’s disturbing that over a year after being diagnosed as hypothyroid, my TSH was ever allowed to reach 4.890 to begin with.

The second shocking result was also shocking for the test itself. Apparently, back in 2007 I had a 24 hour urinary cortisol test done. I didn’t know! I wonder which indicators caused my doctor to run that test? I’m sure I have a record with her notes about that, but I’m not organized enough yet to know where it is. I bet it would be relevant, though. And of course even more relevant are the results! They would have been good to know in 2012 when I was out of work, feeling lousy, and dealing with a doctor who didn’t believe I had a cortisol issue. Because the thing is, even back in 2007 my cortisol was too low! It was 0.61, only slightly below the normal range of 0.63-2.50. Still, cortisol shouldn’t be at the lower end of the range, much less below it, and I had the symptoms of cortisol problems along with chronic pain and hypothyroid, which can both contribute to cortisol problems. And yet it wasn’t addressed. Or mentioned. At all. And so it was another 5 years before I found out I had adrenal insufficiency. By then, things had gotten worse. That’s obvious from both the test results and from how I felt.

Even if all of my health problems were caught earlier, I’d still have autoimmune conditions. I would always have Hashimoto’s Disease and hypothyroid. That wouldn’t have changed. But if I’d known then what I know now, if the doctors had addressed these issues back then, so much would have been different. The adrenal problems could have been addressed before they turned into adrenal insufficiency. The Hashimoto’s could have been addressed before so much of my thyroid was destroyed. I might never have suffered such debilitating fatigue. I might never have had to leave my job. I might not now be on Social Security and unable to work. I might not have gone through the stress, emotional upheaval, and bullying of navigating long term disability insurance, social security, and MassHealth. I might not have had the financial strain of the past several years.

And you know the worst part of all? Those “mights” are really “likely.” Because chances are, a lot of my small problems in 2007 could have been prevented from becoming big problems in 2014. And that is a personal tragedy. That is a failure of many doctors and of our medical system in general. And that is a harsh reminder that no one will ever care more about my health than I do, and so I must continue to do my own research, review all of my own test results, and question everything. The doctors might not like it but if they complain, I’ll just point out the dozens of mistakes that have already been made in my care. And if they still don’t like it, I’ll find others. Because my health is too damn important to allow these travesties to happen again.

13 Comments | Educating, Expectations, Fatigue, Frustration, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

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