Autoimmune / Hashimoto's / Thyroid Awareness

It’s Thyroid Awareness Month, and I Am Fed Up.

BluePaisleyRibbon-198x3002Last week I did something I don’t like to do.  I went to a walk-in clinic seeking antibiotics.

Gasp!  You’re crazy!  Haven’t you spent 11 months trying to cure leaky gut and get a grip on your autoimmunity?  Aren’t antibiotics bad for the gut?

Yes.  Yes, I have.  But I had some issues that the homeopathic stuff would not cure.  I tried.  It failed.  So off I marched off to seek Western medicine, which always makes me nervous.

A funny thing happened while I was there.  After reviewing my information, the nurse practitioner asked me about my diet.  I went through my Hashimotos/AIP talk, expecting her to shrug at me and move on.  That’s usually what happens.  When I got to the part about how a year ago I thought I was sick and hopeless, she smiled.

“I have Hashimoto’s,” she confided.  “I am on the highest level of Synthroid, my lab tests come back normal and I still feel awful.”

For a minute we shared war stories about doctors and misdiagnosis.  Both of us knew other thyroid patients that had endured the same, or accepted poor treatment because it was the best they could do through insured health care.

She gave me her card.  “Let me know if you find a good Endocrinologist.  I haven’t been able to find one.”

This isn’t the first conversation I’ve had like this.  In the last few months, I have opened up about my battle with Hashimoto’s to family and friends.  As I do, I find that many of the women I know and love have silently battled their own thyroid disorders – some for decades – and still suffer the effects of inadequate treatment.

Seriously.  Enough already.

It’s Thyroid Awareness Month, and I am fed up.

Fed up with inadequate diagnostic standards.

Fed up with the lack of effective treatment.

Fed up with smart, strong, women (and men) suffering with thyroid symptoms that aren’t resolved by getting their TSH in range.

I was just there myself, less than a year ago.  I know the isolation, the questioning of yourself, the strain that untreated illness brings to a family.  I know what  it’s like to tell a doctor about your suffering, beg them for help, only to be told that you are “normal” and they can’t help you.

Those are the darkest of days, my friends.  And I want to do something about it.

Those of us that are “adequately treated” with a TSH that is “in range” are often left with symptoms that leave us exhausted, foggy, and overwhelmed.

We are told to accept it as a part of life, because if our TSH is normal, we are fine.

Those of us still suffering know that’s not true.

With every dismissal, refusal to treat, or failure to provide options in treatment, we lose days, months, or years of our lives.  Our stories go untold.  It’s hard to fight for a cause when you’re too tired to get out of bed.

In honor of Thyroid Awareness Month, I created The Thyroid Voice Project – an opportunity for thyroid patients to tell their story.  I hope that it calls attention to the need for better care for thyroid patients, and I hope that it provides a feeling of connection and source of healing to anyone suffering with thyroid disease.

I think that if we raise our voices together, we will be heard.

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