Wednesday, January 25, 2012

A Rose By Any Other Name....

Would it smell as sweet?  Probably.  But what is not as sweet is the label of Chronic Fatigue Syndrome.  And thanks to a lot of hard working people, the name itself is under constant debate.  This may sound silly - if your sick, why does it matter what its called? Well, apparently it matters a lot.

The name I most identify with, which has been under consideration, is Neuroendocrine Immune Dysfunction Syndrome - wow now that sounds f'ing scary!  I don't chose it for the scary reason, but that it most accurately describes my history with this illness -

A brief history was my lack of hyperthyroid diagnosis, because my labs didn't match the normal findings. So I suffered with anxiety, depression and even a suggestion of anorexia by a top endocrinologist - because "I couldn't be hyperthyroid since my thyroid stimulating hormone" wasn't out of range - normally the first clue to a thyroid dysfunction.  Well that makes sense if your hypothalamic-pituitary axis is working properly.  Mine wasn't.  Therefore, despite having a relatively normal TSH value, my actual circulating hormone was still high....well wait again, as I was told by another doctor - "you technically are not hyperthyroid because you are one decimal short of the actual diagnosis...." I am not joking here - so you have a woman, with a maternal history of Grave's Disease (auto-immune hyperthyroid) suffering from the following symptoms: tremors, anxiety, heat intolerance, excessive weight loss (enough to be clinically diagnosed with anorexia) - despite excessive hunger and fatigue....but "the lab isn't 4.1 its 4.0 - and who is crazy now?

Did you seriously go to medical school and did they strip away all common sense?  Did you ever think that labs are an average RANGE that is based upon middle aged men?  Its a statistic - its not perfect - treat the patient....Did you know this, its not like there is a male thyroid value and a female thyroid value...but think about how different our hormonal pictures are? Its absurd to not question a lab value if your patient exhibits text book thyroid dysfunction but is a decimal off?  I went to three different physicians, and not one did a full thyroid panel.  Talk about dogma.  But they were happy to shove antidepressants down my throat, who wouldn't be depressed - I was walking around dying of heat, looking skeletal and kept being told it was all in my head.

So there I believe was the beginning of my downfall - the endocrine part, that left my system so exhausted the immune dysfunction had a happy place to gather steam.  I had mono at age 12, tonsillectomy due to chronic strep at age 19, and had carefree twenties until the thyroid hit.

But back to the name.  Unfortunately names matter.  That is why parents spend a painstakingly amount on effort to find the perfect fit for their new bundle of joy.  Its why a name can be so easily tainted, meet a few Jennifer's that really piss you off and a friend says they are thinking of Jennifer as a baby name and most of you will begin to cringe.  Its makes sense, we name things, we name feelings, emotions, we create knick names as terms of endearment.

Its it hot topic of debate, because it should be.  Names and words carry power, and you walk in with a wimpy whiny sounding illness, you often get treated like a wimpy over-reactive person.  So a shout out those of you spending your energy on the name change - and if my vote counts - you know my choice!

The following is the wikipedia entry regarding the Chronic Fatigue Name Debate -
Name Debate Info

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