Tuesday, June 1, 2010

Does Your Doctor Have Wax in His Ears?

Does Your Doctor Have Wax in His Ears?

Is it any wonder that we have difficulty trusting the people we rely upon for help? We seek acknowledgement, not pity nor sympathy. As patients it is absolutely imperative that we listen to what our body tells us. We must continue to ask questions and get second opinions, or in my case, third. We can only rely upon ourselves to build the patient ratio of a trusting doctor-patient relationship, yet we must be willing to accept that despite our best endeavors, there are just some people who will not reciprocate.

After 14 months of repeated complaints that my life altering fatigue wasn’t my “usual” fatigue my general practitioner ran a TSH, thyroid stimulating hormone,
to check my thyroid status. It was low. When I visited another specialist and I told him about these results. He told me it was nothing. I said, “it is something, I am telling you, I can’t find the quality of life I am used to having, (which even at that pretty much sucked, but I was learning to cope in positive ways). THIS IS DIFFERENT!” He patted my shoulder and said, “You mustn’t complain so much and learn to be more positive.” I was mortified that he would think anyone with FM and CFID would complain just to hear their selves talk.

Finally, my family doctor order a test called a thyroid uptake scan, which resulted in “extremely low iodine uptake.” This indicated my thyroid was barely functioning, despite what my low TSH from the pituitary was saying. Let me interject here that the HPA (hypothalamus-Pituitary-Adrenal) axis is thought to be altered in the FM patient, and though the alteration in CFID is different, issues with the HPA-axis and autonomic nervous system has also been seen. Hence, a Thyroid ultra sound, which was negative for tumors. My GP’s nurse called with the ultrasound results and told me no follow up was necessary. But, I knew how I felt and I knew further investigation was necessary, I was contemplating going “all in.” Life to me at that point was worth nothing, and I am a woman with true grit! I made an appointment with an endocrinologist who told me “30% of the population is fatigued.” I asked him if he knew anything about FM or CFID and he said the expected, “no.” I explained the HPA axis research, which didn’t seem to impress him much, but he did order a test to check for Hashimoto’s Thyroiditis with a comment, “I doubt this is what it is, but because you have a family history, we will get it. No surprise to anyone of us at this point, right? It was positive. Yes, Hashimoto’s and a LOW TSH, not the usual, but FM and CFID are not the usual, and I have both.

We must not fall prey to complacency by our healthcare providers. Everything cannot be blamed on FM or CFID. It muddies the diagnostic waters, no doubt, and other disorders can certainly aggravate or intensify a flare, but we live with it every day, and when something is different, it is different. Our complaints must not fall on deaf ears. If your doctor has wax in his/hers and you cannot “flush them out,” I implore you to seek another one who wants to have a doctor-patient relationship, one who sees you as a person and not just a bundle of complaints. We shouldn’t have to silently scream, “Hey you, remember me over hear in the corner, you know the one, your patient.”

Trust is a two-way street. You know when your car is not performing as it usually does. Your mechanic can even put it on a computer to diagnose the problem, but if they don’t know how to fix it, the mechanic is of little use. The same hold true for any health care provider. Education needs abound for fibromyalgia, chronic fatigue immunodysfunction and chronic myofascial pain from unrelenting myofascial trigger points, but you want a doctor with good listening skills, one that trusts that you, the patient, the one who knows their body best. Having a doctor that respects what you have to offer at minimum will improve your outcome and it could save your life.

(See topic “Tips for Communicating with Your Doctor)

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