Stupid Advice Your Doctor Gave You … and what you learned from it

 

Photo by Jennifer Margulis

Photo by Jennifer Margulis

“When my baby turned one, my doctor told me to feed her ice cream every night, because she was measuring small for her age. It was my first child and I didn’t know better. No wonder she doesn’t like carrots. I was just clueless. Clueless. Thankfully when #2 and #3 came along I chose to listen to my doctors more selectively.” —K., mother of three in Solon, Ohio.

“An hour after our first baby was born the nurse tried to give her a Hepatitis B vaccine. I didn’t understand why we would vaccinate for a sexually transmitted disease when my husband and I both tested negative. I told the nurse we needed time to learn about it. Once home we started frantically researching, calling every doctor and nurse we knew, asking our parent friends for their advice. I also called the CDC but they never called me back. Two weeks later a doctor told me the vaccine had been withdrawn for newborns and was actually counterindicated, because it contained thimerosal, a preservative made from mercury and a known neurotoxin. I learned I needed to educate myself about the recommendations for childhood vaccinations and not blindly follow the doctor’s advice.” —J., mother of four in Ashland, Oregon (that would be yours truly but I’m writing it this way to be true to the form of this post.)

“During my first pregnancy I had sudden massive bleeding at 33 weeks. I was traveling to my parents’ home and far from my midwives, so I had to go to the hospital in my hometown, which was quite small. Fortunately the baby was doing fine, so they kept me on bedrest, but when I continued to have sporadic and significant bleeding episodes over the next day or so they said they would have to take the baby out right away the next time I had a bleed, despite the considerable risks of prematurity. We switched doctors and hospitals two more times before we found a doctor who believed in waiting and watching without intervening. The bleeding stopped and I was able to return to our home, where our son was born at full term in our birth center in Cambridge. I learned to always get a second, third, or even fourth opinion when possible (even by phone: we were in touch with our Bradley instructor and our midwives back home). It was pretty interesting to see how differently so many different medical caregivers approached this sort of emergency. I also learned to find support and information wherever you are. My husband and I found a doula and other alternative-birth support quickly which also helped us to find the right medical practice for our situation.” —C., mother of four in Cambridge, Massachusetts.

“I thought my PCP had written me a year’s worth of birth control at my last pap smear but instead I found out on a Friday she’d only written me a prescription for two months and I was about to run out. The pharmacy wouldn’t give me more without a prescription and my doctor didn’t return their calls that Friday, so I had to page the emergency doctor over the weekend and have them call it in. I know emergency docs aren’t there to dispense birth control (as the dispatcher insisted and I kept insisting she put me through), but if my doctor had written a full year’s prescription, I wouldn’t have been in that situation to begin with!

The same doctor told me I didn’t have a yeast infection even though I was displaying all the symptoms. I’d gone in for a pap smear and the letter from the lab said everything was hunky dory. Then I go see a gynecologist a month later because I’m still in pain and she nonchalantly informs me that my test results DID show a yeast infection but whomever processed my test results missed it because they didn’t scroll all the way to the bottom. Although I generally like and trust doctors, these two experiences have made me feel like they’re sometimes too busy to be thorough and that I need to be better about checking everything myself.” —S., Boston, Massachusetts.

“I went into the ER for a kidney stone once and woke up in the cardiac ward because they gave me so many medications that my heart rate went through the roof. They lost the kidney stone and couldn’t test it for its chemical makeup. I learned to keep my wits about me at all times when dealing with the medical industry, have someone in the hospital with you (at all times, if possible) who feels comfortable advocating for you and respects your wishes.” —S., Oakland, California.

“When I was pregnant, the doctor’s office gave me a set of lab reports to take to the hospital where I had to get a Rhogam injection. I sat in the waiting room and there was one result that was listed as abnormal. I didn’t have time to process it because I was called back and handed over the report. I asked my doctor about it later and she said she saw nothing abnormal, but I know I saw something. I had nothing to refer to, though, to specifically ask about or research (fortunately the pregnancy turned out just fine). It bothered me not to be able to look at and think about my own information about my body. My primary’s office will not copy me on lab reports and instead send me their own recap of them, which does not make me happy. In New York state patients are NOT entitled to access lab reports unless their doctors consent. How’s that for screwy? It’s my information and I pay for it, yet I am not allowed to access it. Now I make a habit to request copies of lab reports, because I want to have my own records (so I can research things, compare results over time, and bring them with me if I see new doctors).” —B., mother of two in Buffalo, New York.

“Every time I went to the doctor my blood pressure was high. He said it was due to ‘white coat hypertension,’ meaning it was because I was nervous at the visit. Then I started reading that white coat hypertension was not always limited to doctor visits—that many doctors mistakenly think it is, but the patient’s blood pressure is really high at other times, too. I asked him for a 24-hour monitor, which he agreed to. And the result was that I had pre-hypertension and was put on meds. My doctor did not say anything about how diet can influence high blood pressure. It wasn’t until I visited a health spa that offered a no-salt diet that I realized my high blood pressure was directly linked to my high salt intake. I ended up going off my meds and watching my salt intake really closely. I learned that most doctors don’t get any training in nutrition and I would have to learn about how a healthy diet could improve my blood pressure, and overall health, on my own.” —S., mother of two in Wilton, Connecticut.

“I went to my doctor complaining of exhaustion. I wanted a sleeping pill because I was having trouble getting my sleep routine fixed after being awake so often with the baby. She was now sleeping through the night, but I wasn’t. I kept waking every couple hours with a jolt. I’d also lost a bit of weight. Some of my hair had fallen out. But my main complaint was exhaustion. I had never been that tired in my life. I told him I was so tired that I didn’t even want to stand up, and that it had suddenly gotten worse in the past few days. I told him that my glands were very swollen and that they seemed to swell a lot.

The doctor didn’t examine me. He took my self diagnosis of a sleeping issue and then decided that I must also have a mood disorder. He said something about how there’s no test for serotonin and then instead of a sleeping pill, he prescribed something that is usually given to people with bipolar disorder. He told me that it would increase my appetite and make me pleasantly sleepy at night. I tried it for three days. It didn’t help me sleep. It didn’t give me energy. It made me extremely hungry—so hungry that I couldn’t get anything done because I couldn’t stop thinking about eating.

Then I got a fever and my throat started to hurt. I went back to the doctor. I had strep. I probably had strep before and he might have realized that had he examined me like a normal doctor and actually looked in my throat. I learned that if a doctor misdiagnoses you, it’s time to change doctors. I have a new doctor now and I love him.” —A., mother of one in Emmaus, Pennsylvania.

“July 4, 2005, I came down with flu symptoms. My energy was completely gone. Lyme Disease cannot be detected in blood for a month after a tick bite, but my general practitioner did blood tests anyway. He decided I didn’t have Lyme disease but there was something wrong with my liver. I begged for another blood test a month later. Sure enough, I did have Lyme. It felt like being run over by a train. I called a friend whose husband is a contagious diseases doctor. He recommended 6 to 8 weeks of Doxycycline, since there was a delay in diagnosis. My doctor only wanted to give me three, but I insisted. A month later I saw a Lyme specialist who pronounced me cured. My reaction? No way! My immune system was shot. I sought out a whole health doctor who prescribed the herb Cat’s Claw and explained we cannot know whether the Lyme may have become chronic. I have not had a relapse, so perhaps I’m one of the lucky ones. But how infuriating early on to have my GP misdiagnose. Lyme is almost an epidemic where I live! This experience taught me to follow my intuition, listen to my body, and seek out a doctor I can trust.” —A., mother of three in Wellfleet, Massachusetts.


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14 thoughts on “Stupid Advice Your Doctor Gave You … and what you learned from it”

  1. I think in every profession there are some people who are really excellent and some who are just going through the motions. It’s important in health care to not settle for anything less than excellent, yet so many of us do.
    .-= Alisa Bowman´s last blog ..How Strangers Can Save Your Marriage =-.

  2. All these stories are important lessons and great examples to remember to trust your instincts, get more than one opinion and weed out the bad from the good. AND it’s so important to educate yourself and not go into any (health) situation blindly.
    .-= Sheryl´s last blog ..When it

  3. What. A. List. Wow. All I can think of is that each person, while going through what they went through, must have felt buckets of anxiety in their own way.

  4. After working at a doctors’ office I can tell you that they are so pressed for time I wonder at how they are able to diagnose so quickly. With this in mind, I try to always make appointments early in the day (if I’m really worried about something) so that they’ll hopefully be less busy. Of course, that doesn’t always work, but when I can…
    .-= Kristen´s last blog ..3 Fancy cookies 10 minutes No kidding! =-.

  5. Its so important to trust yourself, your intuitions about your body and those of your kids. But I think its also important to have a medical person whom you can trust when you’re not sure. I go to a western trained nurse practitioner who is also a homeopath. I trust her wisdom and her open mindedness. And she’ll tell me if she thinks I need to go to someone else. As I get older its more important to me to have an advisor when I’m not completely comfortable with my personal knowledge. For example: whether to get a flu shot. There’s so much pressure on me from the medical establishment to get one. I’m a senior and I have asthma. But I’ve been able to withstand that pressure, in part because this nurse practitioner supports my decision.

  6. At this point, I’d love to get ANY advice from the kidney doctor currently working on my husband’s chronic issues. As it is, we’re pretty much out here flying blind.

    On the one hand, Western medicine is the reason my husband is still alive. On the other hand, they’re trying to kill him as fast as possible. Which is is, people? Make up your mind.
    .-= Jane Boursaw´s last blog ..Joss Whedon Turned Down Buffy Reboot =-.

  7. For a few weeks I had been feeling like I was pregnant, sore breasts having to go to the bathroom all the time and nasueas. I went into the doctor’s because I had been told that you could get a blood test and it would be the earliest detection. I went in on a Monday and the NP told me I wasn’t pregnant and that I had been drinking to much caffeine and that’s why my breasts hurt. I told her that I didn’t drink caffeine and she continued to insist that I did and I wasn’t pregnant. Friday rolled around and I decided to take one more test, imagine that, it was positive! I took several more and called the doctor’s office, the woman I spoke with said I should wait 3 weeks to a month before coming in and I told her that I shouldn’t have HCG in my urine and not in my blood stream and that something could be wrong like ectopic pregnancy or worse. She got me an app that day and sure enough I was pregnant! Every time I see a woman ask if blood tests can be wrong I respond with a yes. My 3 year old son is living proof of that and I didn’t have a positive result from my daughter until I was about 2 1/2 months pregnant. I knew I was pregnant still though. Always trust your body!

  8. I knew something was wrong with my son, when he woke in the middle of the night saying he was so thirsty, took one sip, fell asleep and wet the bed immediately. He was three, and being a diabetic myself, I had keto sticks that I pressed into his urine soaked pajamas. Sure enough, his sugar was high. The doctor I took him to, first insulted me by saying, as a diabetic, I never should have had kids. Then, he told me to just take him home and let him eat. No tests, no meds, nothing. I looked at my husband and told him we had to get help. We left our south east Alaskan island town and went to another that we knew had experience with diabetic kids. He was in the hospital for ten days getting taken care of. We moved to a location with a bigger hospital and better doctors because of the horrible care we received. I tried to go to a board meeting to address the issue and was ignored. I learned, that if a doctor isn’t willing to admit he is wrong, or just doesn’t know and refers to another doctor that does, it’s time to move on!
    .-= Laurie Bell´s last blog ..The Agony and Ecstacy of Motherhood =-.

  9. With all these medical horror stories (of which I have my fair share), here’s a medical marvel.

    After my 2nd son was born, I began having severe mood swings. One moment laughing, one crying, the next raging and slamming my bedroom door, only to fall into the bed crying again. After two weeks of things getting progressively worse, I thought I had PP Depression and I went to my PCP. I burst into tears as soon as she walked into the exam room. Then I choked out that I was going crazy and needed some anti-depressants NOWWWWWW!!!!

    She looked at me, I mean, really looked at me, and then said “No.”

    I immediately became enraged, but before I said anything, she said “We need to run some tests. I think this is your thyroid”. Well, I had no clear idea of what my thyroid did and was fairly certain that it had nothing to do with my moods, so I was very angry with her, and let her know it. I felt like she hadn’t heard me, wasn’t listening. I needed help and it was so hard to admit that to begin with. But she insisted, and I went to the lab for my bloodwork.

    Two days later, she called me – telling me that I have Hashimoto’s Disease (thyroid) and immediately putting me on thyroid medication. She referred me to an Endocrinologist and told me I’d start to feel better within a week or so.

    And I did. Thyroid medication is not perfect, so I don’t think I’ll ever feel absolutely “normal”, but I have mental balance again.

    What I have since learned, is that my previous PCP ran a thyroid panel four years earlier when I had gained 10 pounds in 4 weeks without any change to my diet or exercise – and I was positive then for thyroid disease. She just didn’t tell me, in fact, I didn’t even know what blood tests she was running on me. I am lucky because it is dangerous to be pregnant with untreated thyroid disease, but I carried a healthy son.

    I am REALLY lucky that when I went to my PCP a sobbing angry mess so soon after delivering a child that she did not immediately diagnose me with PPD, but ran the necessary tests first to see if it was my thyroid. I have since learned thyroid disease is almost always misdiagnosed as depression.

    Moral of the story: If you gain 10 pounds in a month – something IS wrong, do not let your doctor tell you otherwise.

    ALWAYS know what and why your doctor is ordering from the lab – get a copy of it, and look it up on the web.

    Lastly, if you are depressed, INSIST that your doctor run a thyroid panel on you (TSH is the marker that most doctors use, although an endocrinologist will also look at your t4 and t3).

    I am forever grateful to my PCP who did not fold under my rage or the easy diagnosis, but stuck to her guns. Unfortunately, she stopped being a PCP within a year…but that’s a different complaint : )

  10. When my twins were two days old and I was still learning how to breast feed, their Ped told me that if I didn’t learn how to tandem feed them I would fail at breastfeeding. The nurse helping me had a look of horror on his face and ran from the room to tell the rest of the nursing staff, which included the lactation consultant, what he said. After the Ped left, I had ever single nurse on all of the shifts for the rest of my stay do everything possible to support me in all of my decisions.

    A ped in the same practice told me that I wasn’t giving them enough food and they were going to have serious brain damage if they didn’t come up in weight to the middle of the chart, even though they were testing high in the intellectual test and at the top of the height charts (long skinny babies).

    What I learned was that I needed to find a doctor who supports my decisions and not to settle for someone just because they are close. 15 more minutes of driving would have been worth not having all of the pain and tears these doctors caused me.

  11. I can relate to the vaccine issue there. The nurses in particular sold us a bill of goods in the hospital with our first. One such situation was that they vaccinate and told us later (gave us the consent form AFTER) her birth. I was so uptight with all that was going on I didn’t push it but with our 2nd I was sure to put it in our birth plan what to do and what not to do. I’d advise knowing what they do routinely and making a birth plan now to any soon to be parent. It really helps.

    The other piece of incompetence I struggled with was when the new NP diagnosed a lump in my breast. It was actually a lymph node that went awry… He sent me to a specialist and I had to wait a month for an appointment. All he had to do was have me come back a week later and the thing would have been gone and if he had doubts it would have been clear sooner what it was. So I go one month later for a check up with the specialist a total wreck and this Doctor thinks I’m nuts for being there wondering why I’m wasting his time.

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