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My story:
Above all else, I am a Mama to two medically complex & neurodivergent children. Though life as a special needs Mom is complex, those two babies light up my life. I will be sharing little updates on their health concerns here too!
I recently underwent a Parathyroidectomy in January 2024 for an advanced case of Hyperparathyroidism (in addition to my Hyperthyroidism from Hashimoto’s, which is not longer managed). It has caused bone damage, Tricuspid Valve Regurgitation in my heart, renal issues, and other various health symptoms. I had my tumors and over active parathyroid gland removed during surgery. My PTH went from a whopping 196 to 58 after the removal of my overactive gland. I had delayed emergence from anesthesia, which was one of the risks we knew about due to my various health issues. My team wants me to hold off on my other surgeries as long as possible due to the anesthesia complication.
It has been nearly three months since my surgery and my parathyroid is already overactive again. My team is searching to find out why; is it another form of primary hyperparathyroidism or do I have secondary hyperthyroidism too?
With how quickly things were progressing and the damage that has already been done to my heart and bones, I’ve been given 10-15 years to live by two specialized doctors. I will be very aggressive with surgeries and treatments to prolong that life expectancy as much as I can.
Hyperparathyroidism is rare and typically only found in postmenopausal women which is why it took my doctors so long to figure it out. It is very likely the reason I’ve had various symptoms and been ill for years. It could be the cause for how drastically sick I got during my pregnancies as well (I delivered both of my children two months early due to severe preeclampsia & HELLP syndrome).
In addition, my liver is diseased with no known cause. It looks perfectly healthy on MRI and CT scans, though my hepatic function is poor. It is unrelated to the Hyperparathyroidism. I’ll be having a liver biopsy if my next several hepatic function tests stay the same or look worse. It is not yet “bad enough” to keep me in the hospital. So we wait…
I met with a Pelvic Pain Specialist for my c-section complication and endometriosis. She now believes I have a condition called adneomiosis as well. I have been in pelvic PT for many months with no relief. We are going to trial new medication. If that plan doesn’t work out, it will be time for a surgical fix.
In March 2024, we noticed I have been having more and more ovarian cysts and red flags on my blood work. I will be working with a genetic cancer team in October 2024 due to concerning ultrasounds and family history of cancer.
I struggle with Endometriosis, Fibromyalgia, and Chronic Migraines with Aura as well.
I will fight the good fight until I can’t fight anymore. I am still in denial that this is actually my prognosis. We are all terrified and sad, but haven’t lost hope. We’re learned to ask for help in the recent years of medical trauma, as hard as it is. We’ve been building a beautiful village despite our chaotic hardship. 🤍
This week has been a hard week. The symptoms I was having before my parathyroid surgery have come back with a vengeance, and they aren’t letting up.
It has been a week of such intense fatigue I can barely stand, chronic migraines, bone/joint pain, dizziness, and kidney symptoms.
More testing revealed my parathyroid hormone levels are continuing to rise, slowly, but rising. More evidence that the surgery was not a success. My TSH is still incredibly low despite medication changes. It doesn’t make any sense for someone with Hashimoto’s. And my endocrinologist is at a loss! We are now looking into endocrine genetic disorders.
On the pelvic pain front…I have had constant bleeding and pain for two months now. We’ve tried clotting medications with no success. Each ultrasound I have shows more and more ovarian cysts. My GYN and Pelvic Pain Specialist are also, at a loss.
Anddd on the GI front, my latest liver testing still doesn’t look good and my GI symptoms aren’t letting up. I have a follow-up in early May!
It has been hard to keep going and keep fighting. Living for my kids is what keeps me motivated. This week, I could use some love as my team and I dive into more testing! 🤍
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