Please Check Your Vitamin D Level
Knowing mine, and increasing it, kickstarted my journey back to health.
First, A Little Background
TW: suicidal thoughts
For me, 2019 was pretty much just one big extended health crisis.
After suffering my first ulcerative colitis (UC) flare-up in seven years of drug-induced remission, I began the year on large doses of steroids (prednisone) that weren’t helping with the flare but were really messing with the rest of my hormones and suppressing my adrenal glands.
When I finally tried to wean off of the steroids (because you can’t just stop taking them), my body couldn’t deal. It’s called secondary adrenal insufficiency: you give a body steroids long enough, replacing its automatic cortisol production, and the adrenals give up producing cortisol naturally. Then, when you try to get off the drug, your body goes, “Hey, I stopped making that and it was a lot of work — I don’t want to start again!” and throws a big temper tantrum involving extreme fatigue, body aches and pains, mood swings and depression.
Weaning your body off of steroids with secondary adrenal insufficiency is like trying to coax an old car to start running on a frigid January morning; it’s probably going to take a few tries to start it, and when it does start it’s going have to sit and idle for a while before it seems reasonable to actually reverse out of the driveway. By slowly decreasing the amount of steroids you give the body, you’re trying to get the adrenals to start up, slowly start functioning again, and then finally run smoothly in concert with the rest of the body. If I’m making it sound too easy, know that it’s definitely not.
Every time I tried to decrease the steroids, by even half a milligram, I would pay for it with dragging fatigue, aching back pain, and horrible depressive episodes. I mean uncontrollable crying that only stopped because I was too exhausted to keep going.
This went on for months, and I thought it was going to kill me. I was still suffering from the UC flare as well, so between the malnutrition, pain, and fatigue from that plus all of the symptoms from the adrenal insufficiency, I thought it was just a matter of time. And then I made the jump from thinking about probably dying to actively wanting to die. At my lowest point, I contemplated suicide multiple times a day. It was truly horrible, and I thought, completely out of my control.
Okay, you can take a deep breath, because things are finally going to turn around now. I’m getting to the vitamin D, I swear.
The Turn-Around
So, fortunately, this whole time I’m suffering I’m also experimenting with lots of different supplements to help with my various issues, and sometime in early July, I find something that perks me up, just a little bit. I was taking a bunch of things at the time, but I think the trick was a combination of choline and inositol, which my chiropractor had recommended. (I no longer need the inositol, but I still take the choline every day.)
I can’t explain it except to say that it was like a switch flipped in my brain. I had this burst of mental fortitude and focus that allowed me to call up 4 or 5 different naturopathic doctors, schedule phone consultations with them, and then spend the next few days talking with each of them and taking notes on their various approaches to dealing with my specific health issues. I decided on a man who in addition to his expertise in environmental illness, was also just very empathetic with me over the phone.
I don’t remember the exact words, but I remember him saying something like, “Well, it sounds like you’ve been through a lot, but I think we can help you get better.” Which no doctor had said to me before… ever. I’ve seen a lot of doctors in my short 25 years of life, and I’ve gotten a lot of “hang in there, kiddo,” and, “these are your medication options,” but never a simple “we can help you get better.” So naturally, that stuck out to me. I’ll refer to him here as Dr. C.
So three-ish very long weeks later, my mom drives us the hour and a half to Dr. C’s office for my first appointment. Thankfully, I had just had some basic labs done through my regular GI doctor showing things like white blood cell count (very important when you have an autoimmune disease), red blood cell count, inflammation markers (which were never really accurate for me), and various nutrient levels, including vitamin D. As instructed, I brought these with me to the appointment.
Dr. C is a cheerful African-American man in his thirties whose professional uniform consists of a dress shirt and slacks and patterned tie but not an imposing white coat. He is also even nicer and more welcoming than he was on the phone, and we quickly get along. And most impressively, he lets me completely take charge of the conversation, which is something I always want to do at doctors' appointments and notably something that doctors Don’t Like. But he just rolls with it.
We talk about the environment changes we’ve made in our house — mold removal in our basement, getting all of our carpets ripped out, deep cleaning of the whole place — and my main goal of getting tested for mold illness. At this point, I was really stuck on this idea. (I still think it’s a factor, but I’m not as obsessed anymore because that’s not healthy.) Instead of the extremely expensive blood test, I thought I was going to have to shell out for he suggests a nasal swab first, since bacteria and mold like to hang out in the sinuses when you’re immunocompromised, and it’s a much less expensive test. I agree, and so we get to my labs.
We slowly go through the WBC and the inaccurate inflammation markers, and then we get to the vitamin D. Seeing the level of 30, he nods like he’s seeing something significant.
“That’s low, right?” I ask, because I’ve long suspected that to be the case, but my regular doctors had not been concerned because while it seemed low, it was still “in the standard range.” Literally the very bottom of the range at 30 on a scale of 30–100, which itself is fairly arbitrary.
“Yeah,” he confirms, “In a healthy person, I would want to see that at least between 75 and 80. And in a person with chronic illness, like you, I would rather see it between 80 and 90.”
“Oh,” I said, surprised, “So that’s really low then.”
“Definitely. We’ll start you on a regimen to get that up.”
Somewhere near the end of the appointment, after we’ve discussed everything I could think of, for over an hour, he asks me the most beautiful question.
“So, what do you want to do?”
Can you imagine that? A doctor, taking the time to address every single one of your concerns, for 60+ minutes, and then actually asking you how you want to proceed. It shouldn’t be revolutionary, but it is.
I decide to go with the nasal swab test and the vitamin D regimen, just to make things simple since I was already doing a lot of other supplement stuff at home.
We do the swab, I get the first pack of vitamin D capsules, I pay for everything at the front desk, which is definitely not cheap but in my mind definitely worth it, and we leave. I didn’t know it then, but that was the first day of my upswing back to health.
So here’s the lowdown on vitamin D.
It does so much to keep all the systems of your body running smoothly. It helps you absorb calcium for strong bones. It supports your immune system. It reduces depression and fights illness.
It was originally thought that vitamin D existed solely for the absorption of calcium in the intestines, but it turns out that there are vitamin D receptors in a lot of other organs and tissues in the body. It also acts like a hormone that regulates gene expression. It even helps your liver process medications and other toxins.
You mainly absorb it via direct sunlight, so nobody gets enough because our society has evolved to spend most of our time indoors. And on top of that, the best time to get it is in the morning, in the summer, and also the closer to the equator you are, the better quality sun you get. So if you live in say the northern midwest of the United States, like I do, where it’s winter for like 8 months of the year, you definitely don’t get enough sunlight. And even in the summer, it’s not the best quality you could be getting somewhere else closer to the equator, like say, Miami.
You can also get vitamin D from some foods, like eggs, salmon, and liver. But if your digestion is compromised because you have IBD, you’re also not absorbing enough that way.
All this is to say, every smidgen of vitamin D in my body was trying to keep my drowning immune system afloat, keep calcium in my bones while steroids were drawing it out, help my poor liver process said steroids and the other medications I was taking at the time, digest my food, regulate my completely out-of-whack hormones, and keep my very fragile mental state glued together. It’s no wonder I was deficient, even in the middle of summer.
The protocol.
The protocol was simple. For about two weeks I would take a capsule containing 50,000 IU of vitamin D3 (the active form of D) once daily. Then after that, I would switch to a liquid form (which is more absorbable for smaller amounts), taking 10,000 IU once daily for another two weeks. I would repeat this process a few times, and then we would retest my levels.
Now, I know what you’re thinking: Amanda, isn’t 50,000 IU of vitamin D a hecking lot of vitamin D? What if you overdose?! And the short answer is, yes, it is a hecking lot of vitamin D, but remember, I was really deficient, my body needed this vitamin-hormone to do a lot of things that it wasn’t able to do well at the time, and this is what my doctor recommended.
Obviously, I don’t recommend taking this much without knowing your level first and talking to your doctor. Also, it is really hard to “overdose” on vitamin D, since most people are deficient at some level. And I was alternating the super high dose with a more normal dose every two weeks to avoid any chance of that happening. Moving on!
The results.
Here’s where things get really awesome.
Within a few days of taking the high dose, I am noticeably more calm during the day and definitely more chipper. Everyday life is a little more enjoyable. I start communicating more and not just living in my head with the Bad Thoughts. I know this from my own observation and my mom pointing out the positive changes she saw, much to her relief.
After maybe 10 days, I notice with a jolt that I haven’t thought about dying in about a week. Like not once has it crossed my mind. I can’t overstate how liberating this is. I had all of the same problems — my digestion was still a mess, my sleep was horrible, and I was still on steroids — but they just didn’t seem as completely damning as they did before. After weeks of deep, crushing depression, clearly my brain chemistry was beginning to right itself. Just a little bit.
This was enough of a change that I began to consider decreasing steroids again. I had been stuck at 8mg of prednisone for months because it had just become too difficult to try decreasing any more. Even a .5mg decrease would send me into a tailspin that would take me hours to dig myself out from the worst depression/mood swing symptoms and then days to recover physically after that. I was tired of this repeating cycle of suck, so for a while, I just decided to stop until a solution presented itself.
And now, it had. I took the plunge and attempted a decrease to 7.5mg.
My mom cautioned me to try to not anticipate the worst outcome, which previously I would have agreed to externally but internally dreaded the worst anyway, but this time it was easy to let go and let whatever would happen, happen. Funny what you can accomplish with a tiny bit of mental stability.
Now it wasn’t a flawless transition, there was still some fatigue, some moodiness, but overall, nothing like the extreme symptoms I had experienced before. Comparatively, I sailed through to 7.5 mg without a hitch.
This was a real game-changer. I decided to wait a week and decrease again by .5 mg to 7mg. It was even easier. I barely felt a change. The slight increase in fatigue remained, but everything else remained stabilized. No mysterious back pain. And no mood swings. It was a flippin’ miracle.
And the only thing that changed was my vitamin D intake.
Pretty cool, huh?
Where I Am Today
I had to repeat that cycle of super high dose capsules and lower dose drops several times before my D levels finally got up to the height Dr. C and I wanted to see, but my last test showed a level of 89 ng/ml. This is actually now pushing toward the high side, so I currently only take between 6 and 8,000 IU daily, still in drops, (instead of 10,000 IU daily). I might even be able to lower that amount more when summer eventually rolls around and better quality sunlight is more common, but for now, January in Wisconsin demands that I keep up my current dose.
Now, just in case I did a really good job of convincing you that you need to be taking vitamin D every day, hold your horses for a sec. Really, the first step is to get your current level tested. This is a basic lab test that should be covered under your insurance (if you live in the US), and you shouldn’t have any issues asking your primary care provider (I hope) to order the labs since vitamin D deficiency is such a common issue. So really, do that first. You need a baseline before you go off experimenting with dosages.
But if you do that, and you find out that yes indeed you are a little lacking in the vitamin D department, maybe try one of the drops I linked above, between 5,000 IU and 10,000 IU daily (as recommended by my ND, not me). And then if you’re really deficient, like a level of 30 ng/ml or less, maybe go for the alternating capsule/drops protocol I outlined above (again, as recommended by my ND). Do that a couple of times and then switch to the drops for maintenance. And then in three to six months, retest. Hopefully, you’ll see and feel the difference.
In Conclusion
I’m taking a lot more supplements consistently now and I’m also taking LDN, which is a whole separate article, but there’s no doubt that tackling my abysmal vitamin D levels helped me kickstart my journey back to health. I’m still not there yet: I still have gut issues, still have sleep issues, I still get tired during the day. But here’s what’s changed in the last 4-5 months:
- I went completely off of steroids. (YAY!)
- I went completely off of biologics. (Entyvio and Humira, which didn’t help me anyway. YAY!)
- I am, for the vast majority of the time, not depressed.
- My adrenals work again, though I think they’re still a bit fussy because of my interrupted sleep schedule, stress, etc.
- I’m working a couple of different part-time jobs, which I am totally digging and I’m hoping to get back to full-time employment this year.
- I’m enjoying life again.
At the risk of sounding like an infomercial: if you struggle with chronic illness, depression or mental illness, or even just the stress of livin’ in this modern world, you might benefit from increasing your vitamin D level. I hope you found this article helpful, and I wish you the best on your health journey.
Thanks for reading!
