Health Update #7

Even though I have been living this every day, it’s hard to believe I’m almost 20 months into this illness.

As I mentioned in my last update, I had a sensitivity to a thyroid medication (specifically to the T3 portion) that my doctor hadn’t seen before, which put me into an autonomic flare that has lasted five months (and counting). I had extreme hunger and nausea to where my body felt like it never had food, even during and after eating. My blood sugar would constantly crash, causing severe headaches and stomach aches that would start at 4 AM and continue throughout the day until bedtime. I increased my calories by 1,000 a day, which was extremely difficult when you only have four foods to choose from. Once that started to calm, the lightheadedness increased, which came with jolts of adrenaline in my brain and body that caused sensations of the couch, chair or bed falling out from beneath me. This made it impossible to sleep, with most nights averaging three hours, and some nights getting less than an hour total. I just started going for walks again, and I can drive short distances after not being able to do those things for almost four months.

I’m still dealing with lightheadedness and insomnia. I have days where it’s much better, then days where it’s much worse. For a while, it was hard not to be angry with what felt like a major setback. My blood work showed I needed a T3/T4 thyroid medication, and I tolerated this exact medication at this exact dose several years ago (and did very well on it). So, neither my doctor nor I anticipated any issues. And unfortunately, you don’t know if someone is going to have a sensitivity to T3 until they’re on the medication.

And now on to the good news… I went over my latest blood work with my doctor last week, and there continues to be improvement. My cortisol levels are holding steady, my cholesterol and blood sugar continues to improve, my red blood cells are normalizing, my methylation is starting to work again, my inflammation continues to decrease, my thyroid autoimmune numbers came down, and my doctor said I now have the liver of a teenager.

Even better, my ferritin is finally starting to decrease, which was a major concern, so much so, my doctor thought I may have Hereditary Hemochromatosis (HH). There is no cure for this, so if you test positive, you have to “dump your blood,” sometimes frequently, for up to a year or more, then you can decrease the frequency. My gut instinct was that I didn’t have it, but I was still concerned, and now very relieved knowing I’m negative. The even better news about my ferritin coming down, is that my body is coming out of “threat mode.” In conditions like mine, ferritin increases in preparation for a major “storm,” and it’s usually the last thing to start showing improvement in recovery. Another relief was my hematocrit came down, which my doctor was concerned about as that number can be an indicator of not enough oxygen during sleep, leading to a stroke or heart attack. If it doesn’t decrease enough, I will need to wear a device to check my oxygen levels and do a sleep study.
The good news about my thyroid is it’s converting well on its own, but the thyroid stimulating hormone (TSH) is still fluctuating quite a lot (19 to 12 to 2.5 to 4 to 6.9). When this happens, and you aren’t showing symptoms of hypothyroidism, it means the pituitary gland is “overshooting:” it kind of wakes up, then goes to sleep, wakes up, then goes to sleep. This is what was also causing my estradiol to spike and drop without any dose changes, over a matter of just a few weeks, and fortunately, I have no symptoms of it being too low or too high. For those of you in menopause, it’s not normal for your estradiol (or other hormones) to change that dramatically without changing delivery or dosage of hormone replacement therapy (HRT). For now, I will not be going on another thyroid medication. We are going to wait and see how it does as my body continues to come out “threat mode,” and will use homeopathy to treat the fluctuation in the hypothalamic-pituitary-adrenal (HPA) axis.

I had my big testing yesterday, which I do every three months, and I showed major improvement there as well. I came off several supplements that I had been on for a long time, which is always nice, but of course, new ones always get added to address current issues. My doctor is thrilled with my progress, and I feel so grateful that I have not gone backward or had a relapse, which is very common in these conditions. I have not been able to tolerate any new medications or supplements since October, so I’m hoping and praying I will not have any issues with the new plan. Because I couldn’t tolerate anything in the beginning and have had issues on and off with certain medications and supplements, there’s always a bit of dread when starting a new protocol.

My husband continues to be my rock through this and never wavers in his support and amazing attitude. Unfortunately, his dad took another fall last month and ended up in the hospital again, but it wasn’t as bad as the one in October. And because he’s in an assisted living facility, someone found him right away. We are so glad he’s no longer living at home, and we are so thankful his girlfriend, who is taking such incredible care of him.

And shout out to my awesome neighbors who shuttled me to appointments over the last few months when my husband was unable to due to work. I continue to be so grateful for the people who are showing up for me, supporting me and cheering me on. And for the continued prayers—thank you and keep them coming. I’m hoping God will be sick of hearing everyone ask for the same thing and deliver me a full recovery. I have been on my knees praying these past few months just as much as I was in the beginning of this illness. And every time I get good news—or have a slightly better day than the last—I immediately thank Him. Whether it’s the steadfastness of my husband, or a new friend coming into my life, or the work of my incredible medical team, it all comes from God.

“For everything comes from Him and exists by His power and is intended for His glory. All glory to Him forever! Amen.” Romans 11:36