Don’t intimidate the doctor

My home town

Moving back to my home town meant having to find new doctors and in the process of doing so, I met a few interesting physicians – one odd psychiatrist who has since left town, a narrow-minded pediatrician, an open-minded family physician from France, an OBGYN who is very caring but intimidated by me, a brilliant surgeon who is comfortable with me asking questions, an endocrinologist that is very kind but leaves me feeling like something is not quite right, and many other health care professionals with their own baggage.

I was always able to tell if a doctor didn’t make sense in what he said; perhaps I have a full blown sixth sense for medicine or science. In my early twenties I asked a doctor I was working with a question that caught him off guard. It had to do with the difference between two similar skin lesions and he was flabbergasted. Instead of taking my question as “good question… let’s look into it” it was in the order of “how do you know that????” with a look as though I had stabbed him.

Then, in my thirty’s I decided to go back to University to become a biologist. I figured it would be a good incentive to satisfy my constantly growing curiosity as I could arrange my classes around the needs of my two little girls – while remaining a stay at home mom. Med school was not an option for me as it was virtually impossible to get into where I was.

While I was at it, I couldn’t get enough from my science classes. I ended up graduating with double the number of science credits I needed for a degree in biology. Many of the courses were graduate level ones because that was all that was left for me to do – I had already been credited all of the other required art classes from my previous studies.

I didn’t graduate with straight A’s. I did however learn a lot because I was feeding off of everything I had access to. Sometimes, the lab teachers would tell other students to see me about writing good lab reports or papers and then other times, the teacher and some students would gather around me to see what I thought because I had a way of coming up with interesting hypotheses. That was that –  I never got the drift that I was talking too much or controlled the situation in any way.

So back to the local doctors here who (I only realized this week) feel intimidated by having me in their office; they assume “I go back home to double check” what they said (two of them used these exact words)

The thing is I DO NOT double check – at least it hasn’t happened yet. When speaking with a doctor I discuss the topic and I ask questions that are in sync with the knowledge I have acquired over the years – I am a biologist and medical writer and it comes naturally. Occasionally, when I’m on my own, I read articles pertaining to various subjects I may find interesting or of useful/essential knowledge – that is what people in my field of work do. I read quickly and don’t analyze everything. However, I do keep in mind that research results and information can be unreliable for different reasons – as I have learned while studying and working in research. Furthermore, the information I rely upon IS NOT from patient information websites simply because, as a principal medical writer, I have edited and reviewed work from other writers and I can say that misinterpretation of information and data happens. I am not saying we shouldn’t trust these sites, but we don’t know much about the writer nor the editor (who by the way may change the information unbeknownst to the writer). We must keep things into perspective and in line with our needs. Talking about perspective, I have however, and I must say on more than one occasion, noted that physicians rely on Wikipedia for medical information. Wikipedia is usually considered a tertiary source and is not suitable for use in a doctor’s office simply because the findings or information reported would need to be reviewed for accuracy given the context. Besides, doctors have other reliable sources they can use.

In my field of practice it is virtually impossible for me to know everything and quite frankly, if I thought otherwise my knowledge would be saturated and I couldn’t bring anything more to my work. That would be awful of course because scientific advancement is a never ending story. Medicine, in my opinion, works the same way because it is based on scientific knowledge.

The physicians I appreciate most are the ones that don’t assume they know everything – they are in sync or try to keep up with the advancement of science and medicine and have a curious mind or at least are interested in what they do for a living.

Let us look into a few moments where I may have somehow or somewhat directed the conversation (and intimidated the doctor) in the hope of having the right treatment for my daughter.

TSH levels: It seems to be common knowledge among physicians in Canada that a TSH of 5.0 is normal (based on our medical guidelines). So yes, I understand and perhaps that level doesn’t cause symptoms in some people. Apparently (because I didn’t check – but the information actually came to me from a reputable source), in the US and France the upper limit considered acceptable are much lower than that of Canada (2.5 and 2 respectively). I brought this up when a doctor told me that my daughter’s TSH of 5.7 was not significant enough to cause her to be so fatigued. I said: “I understand, but in certain countries (stating which) a TSH of 2.0 and 2.5 is considered the upper acceptable limit”. Note that I didn’t tell the pediatrician she was wrong. There is also evidence out there that some patients are most comfortable when their TSH is set at the lower end of the range. Let’s try to be open minded here – a range (I assume) is determined from average results obtained from long research and analysis processes. Of course there can be variations.

Aldosterone levels: From listening to treating physicians, it appears that as long as the aldosterone renin ratio is within the acceptable range, high aldosterone is not a cause for concern. So once I asked a physician “What about secondary aldosteronism?”  Ouch.  Note that again I asked about this, I didn’t assume they were wrong. I thought perhaps there may be another explanation to my daughter’s very out of range results for aldosterone. The pathways of hormone synthesis are simply confusing and secondary pathways can offer other explanations on disease processes. When in doubt, why not tell the patient (or mother of the patient) that you will look into the results and speak to a colleague?

Thyroid and mood disorders: There is significant evidence out there that shows that treating patients with thyroid hormones alleviates mood disorder symptoms when all else fails, even with normal TSH. My daughter had received a cocktail of mood medication and I was worried given her young age and overall physical state (low blood pressure and blue mottling of the skin). I told the psychiatrist about the thyroid disorder that was not yet controlled – which could also affect her anxiety level. He responded by telling my daughter “It must be difficult to have such an over analytical mother?” This question resulted in making my poor child uncomfortable and feeling bad for her mother who was sitting next to her.

Low blood pressure in children: “It’s normal”. Yes, but my daughter’s toenails and fingernails are blue. The reply: “Oh well, bring her in next time that happens”.

Those are just a few times when I asked questions.

Right at this moment, sitting on my own, I have other ideas on Ehlers-Danlos Type III (EDS). These ideas come naturally to me following years of study and given my interest for molecular biology. EDS is a connective tissue disorder. Here is a simple definition pertaining to connective tissue function: Connective tissue functions not only as a mechanical support for other tissues but also as an avenue for communication and transport among other tissues. 

For the longest time, I thought anxiety in EDS patients had to do with more than neurotransmitter/receptor function. Recently, I came across an article that supported that possibility. EDS patients (at least some of them) show a difference in the brain structure involved in emotions.

Here is my next question: What about EDS and thyroid disorders? My daughter has “fluctuating” TSH results that confuse doctors every time I bring it up. Now look back at the definition I copied above on connective tissue function. What do you think? We may not have the answer, but perhaps there is a “logical” explanation that we should at least keep into consideration based on the fact that she has a connective tissue disorder. I have seen her being tested time and time again when it appears obvious that the answer doesn’t lie in a simple, common blood test or diagnosis.

Should I stop with the possibly “intimidating” questions? I may clarify my position before I start talking next time, but I certainly won’t stop with the questions.


14 thoughts on “Don’t intimidate the doctor

  1. Hi! Here I am, as promised and here’s my thought on this as I definitely have an opinion. You should NEVER apologize for your knowledge, your ability to question and your ability to research at a level equal to any doctor. If they can’t handle it, unless they are spectacularly awesome in their field, find another doctor. They are human, they make mistakes, they can’t possibly study everything in med school,(not even close) and if they are either that insecure or egotistical that they can’t handle a partnership with the patient then that is a red flag to me. Medical school doesn’t make you an infallible god, it makes you a doctor and doctors are human. Period. Always be skeptical, be discerning, not because you doubt them but because you should be that way about everything in your life. You are doing good in a very difficult situation and support and respect are what you deserve to receive from the people you hire to help you! Best of luck.

      • But you do pay for medical care. I am not trying to be contrary, but you pay taxes and it is YOUR tax dollars that pay doctors. Governments have no way to make money, they don’t produce a product they then go and sell in the market place. The way a government makes money is through its citizens and the dollars they collect through taxation. Unfortunately when we remove that ‘writing a check in front of them’ step it is forgotten where the money does indeed come from.

      • You are so right – and look at me with my Canadian mentality! I will be sure to remember that when I am sitting in front of them! This week we have all these emergency testing scheduled with cardiology (finally!) because her nails are blue… I have been telling them that for the past year or so and someone finally woke up.

  2. I hope it is a good week and that you are able to get some answers and thus some peace. And seriously, I am not trying to be ugly, I just get, shall I say, agitated, when people don’t treat other with respect. We are all in this life together and it seems to go so much smoother when we work with each other and recognize each others valuable contributions. I just get upset when one group feels superior to another group and forgets its place. We are all equal, regardless of title or position, and should be treated accordingly. I look forward to hearing how things go this week. 🙂

  3. Wonderful post, and Life&Ink’s point is an extremely good one. You ARE paying for that service.

    I’ve struggled with these questions myself. What am I doing that sets these people off? I’ve decided that a lot of it is just personality, but what you pointed out Sheep, about having curiosity and an interest in what they do…that’s really a big part of it, isn’t it? The doctors I have liked best are the ones who show those traits.

  4. LOVED this post! This is exactly the journey I’m on now. I just wanted to share with you that here in the US where we pay out of pocket (you do too, just in a different way) for medical care, doctors still tend to be very “know-it-all-ish” and don’t like to hear that the patient has a different idea. This is what has led me on my journey (and my recent arrival) to a doctor who listens, cares, believes and has an open mind.

  5. I see you on Dyspatient’s blog (where I write too much) and found your post in the reader. Excited to find you and learn you have an education in biology. I have EDS II with some IV symptoms (negative DNA test on that).

    A few thoughts… My education is not in science, but I learned how to do medical research via journals/textbooks 12 yrs ago and have problems with doctors as a result, too. I’m also very direct, which is a no-no. Many doctors in the US scoff at those who research or know too much and we just have to keep “firing” them to find a good physician! If I hadn’t developed keratoconus and been a researcher, I’d still be carrying a misdiagnosis 12 yrs later. Good riddance!

    My thyroid went out when EDS showed up, as well. My TSH was around 5.0 then. Here’s what may interest you as you live to the north: the LABS in the US still use the old range and the docs follow it!! It took 4 years, and a good doctor, to tell me my TSH needed to be around 2.0 (the guidelines you mentioned and I read about, too). We finally got it there and the thyroid issues are gone with my medication. I do wonder if there’s a connection w/EDS?

    Btw, I think you’re such a great mom for all you do for your daughter. I never had a mother like that so I give you a pat on the back. Take care! A

  6. This is a very insightful post. I have EDS type III. Mu docs assume it’s not a big deal and repeat ad naseum ‘EDS” isn’t a mental illness.” The article you cited is a good one. Hopefully EDS will be recognized one day as the debilitating physical and mentalcondition it truly is.
    Sounds like you’re doing a great job! Keep up the good fight.

    • I always bring articles with me when I know I’m going to have to convince doctors of something. The psychiatrist that follows my daughter welcomes the information as he says he has little knowledge in that area. He’s amazing. But then in one of my earlier posts (“next step”) there’s a lay article on dysautonomia which is a nerve issue and anxiety is also part of that. I read of so many people who also have the latter. So whether it’s due to the size of the amygdalia, compression of the lower part of the brain (Chiari malformation), connective tissue homogeneity, or autosomal nerve problems, severe anxiety (and the behavior that sometimes comes with that) is certainly part of these illnesses. Because my child is gifted, when she was young they just said she was oppositional (see post ‘”when psychiatry does more harm than good”) and it was a very difficult period of our lives.

Talk to the sheep

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