I wish I could say that after receiving a definitive diagnosis of CVID everything was good, however my CVID journey continues.
I WAS WRONG! MY CVID JOURNEY IS NOT OVER!
After receiving IVIG treatments for over a year, I still felt like crap. I mean, less crappy, but not what I would describe as well. When I mentioned how I still felt to Dr. K, my awesome immunologist, he said that he had CVID patients receiving IVIG who ran marathons! “WTF” I thought! I couldn’t run a marathon if someone paid me a million bucks, not to mention there were still days I spent most of my time lying in bed.
I knew then that IVIG was not the “magic pill” that I thought it was. It didn’t bring my “old self” back.
“Fuck me,” I thought (and screamed!). “Now what?”
Well, “now what” consisted of even more doctors, hours of online research reading official medical studies published in well-known journals, and eventually more meds.
I was now on a mission to discover what else could possibly be going on with my body. When I felt well enough I made numerous appointments with doctors specializing in anything!
Luckily, there were two doctors I stumbled across while humming along on my CVID journey that would diagnosis me with two more systemic issues.
My CVID Journey and My Thyroid
Dr. D, a private M.D./Functional Medicine doctor finally performed a full-panel thyroid blood test. This means she tested not just my TSH, but my T4, Free T4, T3, Free T3 and any antibodies that would suggest I had an autoimmune thyroid condition. We discovered I had hypothyroidism. Thankfully no antibodies were detected which shocked the shit out of me considering the long list of autoimmune conditions/symptoms related to my CVID.
Dr. D gave me the choice to take Synthroid, a synthetic T4 replacement medication, or Armour-Thyroid, a T3 and T4 replacement medication that is made from pig thyroid hormones.
I chose the Armour-Thyroid because my blood test showed I was low in T3 and T4. After starting the medication, I immediately felt a little better. So, I had discovered another piece of the puzzle because I continued my CVID journey!
Dr. D had also tested my hormones and discovered my estrogen and testosterone were low. In addition, my adrenal hormones were almost nonexistent! She suggest testosterone shots every other week to be placed right in my bum to aggressively boost my testosterone and adrenals. Again, upon receiving those “pleasant” shots, I immediately felt a little better. After three months of those testosterone shots she switched me to a testosterone/progesterone troika that I dissolve between my gums and cheek every night.
Another treatment she prescribed, which I admit I was skeptical about, was a rice-base, nutrient-rich protein drink that she said would fix my bloated, distended stomach issue. (I would wake up every day with a flat stomach and by mid-morning my stomach would be…well, bloated and distended. So, no jeans!) I was to drink it once a day preferably in the morning. Dr. D also prescribed a pepsin supplement to help my body absorb nutrients better. I solemnly swear, they both worked and have become part of my normal medication regime.
(*Note from me here: Dr. D’s practice is private meaning I have to pay out of pocket for appointments with her and all the medications she prescribes. Obviously, this is not ideal! Insurance did cover the blood tests thank goodness!)
My CVID Journey and My Blood Sugar
Simultaneously, I visited Dr. C because I was having debilitating hypoglycemic attacks that would wipe me out for the rest of the day. Dr. C ran a blood test that tested my serum blood sugar levels and my A1C among several other diabetic-related tests. Sure enough, even though I eat very little sugar or carbs (I haven’t had bread in years!), my blood sugar levels were pre-diabetic level. Dr. C diagnosed me with Metabolic Syndrome. Such a diagnosis meant I was insulin resistant. Dr. C put me on a strict, high protein diet that restricted my carbs to 30 grams or under. He also prescribed an oral estrogen-testosterone hormone replacement medication. Both immediately made me feel even better.
Now, I say that all of the treatments prescribed by Dr. D and Dr. C immediately made me feel better, and they did, but it took 3-4 months for these medications to help my body regulate itself consistently and for me to see a major improvement. I had to be patient (which is not a word in my vocab-just ask my hubby!).
Today, even those these medications have made major improvements and helped me feel better on a daily basis, I know now a large part of my CVID journey will be constant regulation of my bodily functions, mental state, mood, motivation, fatigue, pain, and on and on and on and on…
A special bonus:
I had experienced a short reprieve from losing my hair (on my head! LOL!), but upon starting the Armour-Thyroid it has once again start falling out in clumps. Apparently, upon research, this is a side effect of Armour-Thyroid that may or may not subside. I’ve also read that hormone-replacement therapy can also cause hair loss. Yeah! So, I’m still “getting jiggy with my wigs” every time I go out in public. At home, I go all natural which I’m sure makes me so sexy to my hubby and I know worries my youngest son who is only nine. Jace used to play with my hair when he fell asleep (actually both boys did but the 14-year-old obviously grew out of that!) so he’s young enough that he’s still pretty attached to my hair.
I still use and practice all of my techniques to combat hair loss that which do help and I pray eventually this side effect will soon subside.
But, I digress. My point in writing this post is that IVIG may not solve all your health issues as in my case I believe years of living undiagnosed with CVID have wreaked havoc on my body in systemic and serious ways that I’m working to repair. If you also believe you could be feeling better in spite of your IVIG treatments, please continue to search for answers.
I know it’s exhausting and I wanted to give up on my CVID journey a million times, but I just couldn’t. I (and you) owe it to yourself and to your loved ones to feel the best that you can possibly feel on a daily basis. We all know what the alternative is…and it’s just not an option.
Stay strong my Zebra friends!
ABOUT THE AUTHOR
Though DIVA as she may be, her path to success was not easy and is always evolving. Go here to read about her journey in “Becoming the CVIDiva.” If you want to send Susan Alynne a quick message, then visit her contact page here.