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.

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Looking forward to psychiatry? Yes it’s possible.

Being the mask of Ehlers-Danlos Type III

Behind the mask of Ehlers-Danlos Type III

A few weeks ago, I came across a link on Facebook. I was actually relieved by its content because I had been thinking there had to be a link between depression or anxiety and Ehlers-Danlos Type III for some time. The article is called Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms and can be accessed here.

If you haven’t already read my post on our nightmare from psychiatry, you can check it out here “When psychiatry does more harm than good“.

Last month, my daughter (who suffers from EDS Type III) was seen by someone in the medical field who insisted on assessing her for suicide risk. Of course, we both knew (my daughter and I) that the results would be positive. I mean, imagine if you were 9 or 10 years of age and you felt like you were too tired to do anything (including sitting in the sun because you have a “broken thermostat” – meaning you overheat). And then, over the years your symptoms only get worse – the fatigue is unbearable (you can only sleep) and the pain is at times excruciating (your dog hits you under the chin with his head and the pain is so significant you lose your breath). On a bad day you can’t help but sleep for about 20 hours. You have no friends and you haven’t attended school for over 7 years. At the same time, doctors tell you you are oppositional and that you are tired because you do not exercise. Then when you take the suicide risk assessment questionnaire, your results are positive. Surprised? I don’t think so.

For my daughter, it is not about ending her life; this is about getting a life that she can’t seem to find the road to because there are too many obstacles.

The person who made her write the assessment questionnaire also told us that the psychiatric help she was receiving here was not suitable to her needs. I have to say I disagree and I’m sure my daughter feels the same way.

Every second month (or depending on her needs) my daughter and I see a local psychiatrist who is very  open to the fact that she is burdened by a condition that is misunderstood by most health practitioners (in Canada at least) and at the same time very “taxing” on her mental health status. Like many other health professionals, he knows very little about Ehlers-Danlos – and he admits it. But he listens and he doesn’t judge. For the first time, a psychiatrist walks alongside my daughter and sees more than just a mental issue. Every time we come out of his office, we feel amazing and hopeful. To the contrary of what is stated in my previous post about the danger of psychiatric assessments, this doctor actually tells my daughter that it’s very good she has my full support (rather than me causing her to be dysfunctional) and this week, he even told her that she obviously “absorbs” a lot of valuable knowledge from me and that for now it represents an important part of her culture and education. This week’s recommendation was that – in light of the fact that she is learning from me – she should take one day at a time, keep focusing on how to manage her illness to start feeling a little better, and to not worry about school until she feels ready. At home, we discuss physics, writing, and culture on a regular basis. My daughter’s cognitive scores are in the range of the 90th centile and things need to kept in perspective – she will do well if she can just start managing her symptoms rather than pushing them under the carpet as she has been asked to do.

As for the completed suicide risk assessment questionnaire, the results are considered passive and relevant to the difficulties my daughter is facing on a daily basis.

I would wish for anyone with anxiety or an illness affecting their mental health to meet a psychiatrist or caregiver with as much compassion as that of my daughter’s. Just like anything else, we must keep looking for the best possible treatment out there rather than putting up with something destructive.

When the time comes to say “no”

Along with my daughter’s connective tissue disorder (Ehlers-Danlos Type 3) comes a variety of other health concerns. They include among other things polycystic ovary syndrome (PCOS), hypothyroidism, insulin resistance, and cholesterol problems. It seems I always have to push to make anything happen on a medical standpoint as she is only 16 and still considered by many as a “pediatric” patient. What better excuse – in a remote area – but to be told one is not specialized in pediatrics. She also suffers from severe anxiety.

Because her latest glucose tolerance test (GTT) was positive, I asked that she be seen by a nutritionist. I figured that since we are not evaluating the results any further, we should at least make sure she eats properly. At the same time, since my daughter has been inquiring about becoming vegetarian for years I figured she could discuss this with the nutritionist as well.

A week prior to the appointment, my daughter decided she wanted to lose weight as she had put on 20 pounds in the last year or so because of her medications and other factors. I noticed that she was barely eating anything and writing everything down in a journal. Concerned, I mentioned it to the nutritionist in the presence of my daughter who had never before shown signs of an eating disorder. Big mistake.

The nutritionist immediately concluded the worst possible outcome and without looking into my daughter’s overall condition, scheduled her to be assessed by the eating disorder clinic. Maybe there was cause for concern, but honestly, the last thing my daughter needed was lack of compassion and to be treated like a nut case (I mean by this people making all kinds of decision for her without her being consulted). The whole thing turned into a big mess – we were both being evaluated. I will spare you the details of the crazy event because there really isn’t anything constructive about it.

The second and last meeting with the nutritionist was disturbing. My daughter has an irregular feeding schedule because she is sleeping all the time. We all know that that is not helping her metabolism, but there are days when she feels so weak, she just wants to sleep her life away. And I must say that I understand her. Regardless, the nutritionist was telling her “Well, you are sitting in front of me right now which means that you have the strength to sit up and eat at the kitchen table at a regular schedule – morning, noon, and evening…”. Her ranting went on and on about her making more efforts and changing her habits. At that same moment, my daughter was visibly suffering, fidgeting  trying to feel comfortable in the straight chair she was sitting in with her legs hanging, the skin of which I knew was mottled in blue under her jeans. I kept trying to make her (the nutritionist) understand that my daughter has a connective tissue disorder and that she suffers from a lot of pain and fatigue which often causes her to be dysfunctional or nonfunctional with regards to her regular daily activities, but sill the message was not getting through. The nutritionist kept trying to find arguments. It was ridiculous and simply painful until the end.

As my daughter and I stepped in the elevator, we looked at each other and the tears started running. So many years of misunderstandings; so many years of pain. It was at that moment that we said “We don’t that”. And that was it.

I ended up calling the clinic to say that my daughter would not attend any further meetings and that if anything was to be done, her condition needed to be properly assessed once and for all. I also added that the nutritionist lacked essential knowledge and that the situation was detrimental to my daughter’s health condition.

I don’t know how many times any of us feel helpless when confronted by decisions made by healthcare workers with little or no knowledge, or simply lacking essential medical information regarding our own health. I know that standing straight and saying no to an obvious misunderstanding on a professional’s part can only open the doors to better things.