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I'm having a tantrum about how hard it is to live with chronic illness.

Back in May, I had some bloodwork done. I discovered that my thyroid hormone levels were in the normal reference range but were, in my opinion, suboptimal. Combining those numbers with a slew of symptoms that had snuck up on me a little at a time (as they always do), I talked with my doctor about upping my thyroid support supplement dosages (iodine & l-tyrosine). We agreed that I would increase those and we would follow up in July. If I was still symptomatic and my numbers were suboptimal, we would talk about increasing my thyroid prescription dosages.

My bloodwork appointment for that is next Tuesday. The doctor sent in the lab order today and emailed me a copy. It didn’t have the thyroid tests on it. I asked her to please add them. She did, but warned me that when people have normal results on these tests, insurance plans often only cover them once or twice a year, so I might have to pay out of pocket.

I’m lucky and privileged to be able to take that risk without worrying it will cause my family hardship.

But I’m also angry on principle. Because if I already felt so terrible when my levels were normal-but-suboptimal, how miserable would I feel if we waited to modify my treatment until my levels were below normal? How sick does a person have to be to “deserve” treatment?

Wikipedia tells me:

In case of medical tests whose results are of continuous values, reference ranges can be used in the interpretation of an individual test result. This is primarily used for diagnostic tests and screening tests, while monitoring tests may optimally be interpreted from previous tests of the same individual instead

I wish that had a citation, but I’m going to take the point anyway. I’ve been diagnosed with this condition for 10 years. We always use these ranges for monitoring because I’m already diagnosed. I’ve noticed a correlation between symptoms and the test results but because it’s easy to swing too wide in a dosage switch I like to pair symptoms and results to help determine my next move. I am frustrated and exhausted by the fact that being chronically ill is a constant fight, that so many things can stand between me and wellness no matter what actions I take.

I’m glad my doctor will order the test; I’ve had doctors who wouldn’t. I’m glad my family can afford to pay out of pocket; we haven’t always been able to. But I am livid for myself and others that we have to work so hard to get what we need to merely function, never mind thrive.

(I’m aware that there are many different things that prevent people from thriving. This is the one I’m feeling hardest today.)

Kimberly Hirsh, PhD @kimberlyhirsh