Something in me said, “look up (actress) Gina Rodriguez’s journey with Hashimoto’s disease” this morning and I’m glad I did… because it validates a lot of what I’ve been experiencing over the last year plus.
This is something I’ve only shared with those closest’s to me: my new endocrinologist suspects I have Hashimoto’s disease… an autoimmune disease that would explain all of my symptoms and then some. It could be that missing link; the autoimmune condition that so many doctors (from primary to hematologist to rheumatologists over the years) have suspected without being able to pinpoint exactly what it was. How we got here has been quite the journey but it all started with an unexpected discovery: I tested negative for Addison’s disease.
You’ve read that correctly. I tested negative for Addison’s, something I’ve been carrying around with me for a long time. That is why I no longer refer to having Addison’s on social media; why I’ve now been saying the more generalize “adrenal insufficiency.” My new endo — whom I just started seeing at the beginning of this year — had me tested for Addison’s due to the conflicting diagnoses of my two former endos. I was told it was secondary adrenal insufficiency at first. That endo also gave me hope that it would one day heal. The second endo — who I only saw for 6 months before she retired — said it was Addison’s. So, the new one had me tested and I don’t have the markers for it. I still have adrenal insufficiency, but it doesn’t look like it’s Addison’s. Since I still have multiple symptoms and still need the medication, the endo decided to dig deeper after my latest thyroid ultrasound showed that I had a new thyroid nodule and that I’ve had an inflamed thyroid for at least 6 years.
None of my former doctors had mentioned the thyroid issues. NONE. I wasn’t even diagnosed with hypothyroidism until I was also diagnosed with adrenal insufficiency and bilateral optic nerve atrophy in October 2020. I’ve been on meds for the hypothyroidism since then as well. The meds have been working but I think it was a slew of new symptoms that tipped my new endo off.
I haven’t shared this publicly (though some friends in my close friends list on Instagram saw): I had lost most of my right eyebrow last year. Neither my primary nor dermatologist knew the exact cause of it, though the dermatologist theorized it could’ve been the adrenal insufficiency. I learned just this morning — thanks to that video with Gina — that that is actually a Hashimoto’s symptom. That along with several others — most of which have slowly popped up over the last year — point to Hashimoto’s with adrenal insufficiency being secondary and caused by the Hashimoto’s.
Last week I went back to the ER due to new and somewhat troubling symptoms. I might not have Addison’s but I can still have an adrenal crisis with secondary A.I. My entire body felt weak yet heavy. All of my muscles were tense and stiff. My joints were as well. I felt too weak to even sit up. It was very similar to the symptoms I had with pancreatitis but the all-body stiffness was new as was the back pain. As soon as I saw that the back pain wasn’t going away, I made the decision to head to the ER because it’s one of the biggest adrenal crisis symptoms and you don’t mess with that. All tests came back normal. The doctor couldn’t figure out my latest symptoms and asked what my primary thought. I told him I didn’t know; he didn’t know about the latest symptoms. I couldn’t get a hold of my endo either which meant ER trip for me. This has been drilled into me by all endos in the last almost 3 years. When I got home, the thought to look up Hashimoto’s symptoms popped into my mind and, sure enough, they were all symptoms of a flare up.
Even though Hashimoto’s isn’t fun, it would be a huge sigh of relief for me. Getting the diagnosis I mean. It would allow me to try new things to help symptoms for this specific disease. It would also mean that the latent autoimmune disease that so many doctors have been waiting to diagnose has finally developed enough to have a proper diagnosis.
I don’t know why but I feel like this is finally it; that I’m going to get the proper diagnosis that will help me get out of this terrible health rut I’ve been since November 2021. That’s when the fatigue got worse. That’s when I started spending almost all of my time in bed. That’s when all the other symptoms started popping up and the existing ones got worse. As I’ve learned from Gina’s experience, sometimes it takes years from the hypothyroidism diagnosis to get to the Hashimoto’s diagnosis. I just pray that God, in the Holy Spirit, will guide my doctors down the right path.
Anyway, I just wanted to share that. I was going to wait until I got the test results for Hashimoto’s in early August but I felt a tug to share this now, especially with some well-meaning folks on social media insisting that I have other illnesses or trying to diagnose me and “cure me” based on their unofficial diagnoses. I thank them all very much for their concern but sometimes it’s a bit overwhelming because they don’t let things drop and they treat me like a stubborn unintelligent person and I don’t have the mental capacity (my brain fog, lack of concentration, and memory issues are getting worse — all Hashimoto’s symptoms) to deal with that.
I’m feeling very physically and mentally drained (thanks, neighbors who partied until very late last night) so I’m going to try to get a little nap in while the kids aren’t outside.
I hope you are all doing well! And my apologies for not writing more often. It seems like I’ve had flare ups of multiple things all at once so I’ve been, basically, sleeping and simply trying to exist most days.
As always, thanks for reading and God bless!
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