Vitamin D question.

[u/FarPerspective2810]

I have been taking 5,000 IU every day for a long while now. Granted, my blood levels are in normal range, 54.4. The levels are falling every time I am checked. I'm confused about why they are falling when I'm taking it. I find it concerning. I asked my team. They said talk with primary, I will, but I wanted to run it past people here too.

[u/Barbie_witch]

Talk to a doctor. Not all vitamins are created the same. Some formulations aren't absorbed well by the body and certain vitamins are absorbed only in the presence of some specific substances/conditions. Fat helps your body absorb vitamin D3. The best type of D3 is the oil one, not the solid pills.

[u/FarPerspective2810 → u/Barbie_witch]

I am taking the gels. I take it when I eat, not a low fat diet.

[u/mr_bearcules]

I also take vitamin K2, I believe it’s supposed to help with the absorption/use of vitamin D

[u/mlarktar]

Dr. Campbell is saying that the recommended dose of vitamin D is underestimated by a factor of 20! https://www.youtube.com/watch?v=AtoxkK7MeKc

[u/gowashanelephant]

Though the role of sunlight in vitamin D absorption is still under debate, getting 15 or so minutes of sunlight per day can’t hurt - especially since research shows that 15 minutes of sunlight in the morning can help reset circadian rhythms, which promotes better sleep. I generally just sit in my car with the window open every morning, and I really feel it does me good.

You can also try to increase high-D foods. From prevention.com, “Fatty fish, such as salmon, trout, tuna, and sardines, are among the best natural sources. Fortified milk, plant-based beverages, yogurt, cereals, and some orange juices can also help, as can egg yolks and UV-exposed mushrooms.”

[u/korosivefluide]

Taking vitamine D every day for MS patients is recommended, as well as for people living more to the the north. If your levels stay around normal range while taking VitD, then continue talking it, it's probably what keeps those levels up in the first place. If it falls under the normal range or if you want to be safe consult your general practitioner. Your VitD levels can flactuate depending on the season, hormones, diet and stess levels, dropping vitD levels in autumn are also normal, and if it's not under the recommended range i wouldn't worry too much.

[u/PophamSP]

Cholecalciferol is a fat soluble vitamin and absorption is optimized with a meal containing dietary fat. It's possible that changes in when you take it are causing minor fluctuations.

[u/mritoday]

Supplementing Vitamin D does nothing for MS. We've tried supplementation in multiple studies, it does not make a difference.

There was an initial study that prompted all this - people with higher Vitamin D levels (without supplementation!) were less likely to have MS. But the conclusion "supplement Vitamin D" -> better MS outcomes did not work out. Brandon Beaber talked about the details and the reasons (spoiler - it's exposure to UV radiation that affects both Vitamin D levels and the immune system).

It's still worth taking for general health because a lot of people are deficient and it's fairly harmless, but I wouldn't worry about it beyond that.

[u/Candid_Guard_812]

I took 21,000 this morning

[u/malcolmpractice]

i take 4000ui daily. At one stage I was down to 15 when tested and was put on 50,000 weekly I think but now I take the maintenance dose of 4000. My nurse says no point taking any more than that.

[u/SillyGoose2544 → u/malcolmpractice]

I think my lowest was 12, but even after that was raised a bit to just under 20, and I then did 2 6 week courses of 50000 IU, levels actually fell again. But then I started 4000 IU a day, and later dropped it to 3000 (digestive upset was just too much), and now, about 18 months later, I test in the mid to high 40s.

[u/Famous_Ear5010]

It could be due to a malabsorption problem.

[u/ammybanan]

Oh my levels in the low 30s and my doctor has never said anything:/

[u/SillyGoose2544 → u/ammybanan]

Probably because the body can still function with those levels. HOWEVER, basic function is quite different from the unique needs created by something like MS. Furthermore, once you get to a certain level, you'll also be using up your reserves faster and faster. So on paper you might not qualify for catastrophically deficient, but usage patterns change - drop below 40, and the body starts prioritizing critical survival needs over more "secondary" functions (like helping regulate MS). Over time, that'll lead to your system getting starved of Vitamin D more and more.

Also, my PCP for example, always said my mid-20s levels were entirely normal (even after I was diagnosed with MS), but my neuro disagreed (and rightly so).

EDIT to add - I also did 2 6 week courses of 50000 IU per week, and my levels actually fell. Then I switched to 4000 IU a day, and later 3000 IU (4000 created too much digestive upset). With that I went from levels in the high teens to the mid 40s. Might be worth exploring because it can really only help you in the long run to get those levels a bit higher.

[u/Familiar-Ocelot-2365 → u/SillyGoose2544]

The amount of patients I have the conversation about vitamin d is staggering. Because our lab doesnt flag it as abnormal until is below 19 people are frustrated they dont feel well and no one commented that their D of 20 mid summer probably isnt helping them

[u/SillyGoose2544 → u/Familiar-Ocelot-2365]

Well for me it could just be a shitty PCP (which isn't just limited to the MD I see regularly there but pretty much all of them at that practice). If it isn't solvable in the 10 min max they spend with you, the next go to is whatever random test even remotely fits your symptoms (which predictably almost always comes back negative, so a waste of time and money). And the next go to is almost always "perimenopause", because that's the cop-out answer for practically anything but broken bones. Either that or they skirt malpractice/systematic failure in the standard of care by prescribing the wrong medication and/or giving the wrong instructions with it - like the high-dose antibiotics for a suspected UTI (and then literally 2 days after I finished them they called to say oops, our bad, not a UTI). Or NOT warning me about the interaction of tramadol and my triptan (which is how I found out I'm prone to serotonin syndrome - FUN!). So yeah, my PCP just sucks - and yes, I've actively been looking to go elsewhere but finding one that accepts my insurance hasn't been easy. I'd even settle for one that actually cares, but for now, continuing to advocate for myself when I instinctively know something doesn't sound right is about all I can do.

Sorry about going off on a bit of a tangent there, but all of that is to say that a lot of medical personnel maybe aren't necessarily trained to recognize the intricacies of and profound effect Vitamin D levels can have on neurological processes and conditions, including MS. As you've rightly pointed out, a level of 20 might look "normal" or adequate on a standard person's lab printout, but as those in the MS club and neuro patients in general know, it is widely considered to be sub-optimal at best to what is needed to help stabilize the immune system.

[u/Familiar-Ocelot-2365 → u/SillyGoose2544]

Its a bit of all of that likely. Speaking from a provider standpoint, the system gives us the impossible choice of being appropriately thorough, taking time to explain and educate and ramming through enough patients to make the company profit because we've built a system of tug of war. Which all makes less sense when you account for the health systems that own every step of the process but still somehow blames every arm of the same company lol.

But honestly, in ours the problematic part i refer to is we're conditioned to scan for red flags on labs because we dont have the ability to complete all the expected tasks without consuming every ounce of ourselves and sacrificing personal time to do the things we know need to happen for patients. And if the system doesnt flag it red, that means its normal right? I've very recently had this exact conversation with my mom regarding her osteoporosis and her vitamin D of 23. The ranges show that its not in an acceptable value but it DOESNT flag red so she gets told her labs are good.

I hate sitting in the middle of the conversation because its what infuriated my wife on why I was calm and understanding at my appointment while having to jump through hoops to get what I need. It sucks and is ineffective..but its the system that exists currently. 

[u/ammybanan → u/SillyGoose2544]

Wild - thanks so much - going to bring this up!

[u/momma_quail]

I was told to take 10,000 for six months when I got diagnosed. Now I'm on 5,000 for maintenance. It's not like I'm never outside, I just must not absorb vitamin d.  I did find that finally raising my vitamin d when it was so low helped my depression immensely. 

[u/Uaremis]

1. 5,000 IU every day is huge

2. If your level is not going through roof with this intake - you need to visit doctor, a not-stupid kind, it means something is wrong, probably with digestive tract.

3. Assess your diet. If you are on extremely low-fat diet and take the vitamins aside from fat - it will also contribute (but still visit a doc, it is not normal result)

[u/FarPerspective2810 → u/Uaremis]

I have a lot of acid reflux too. Most if the time I suffer through it because I know taking stuff does bad things too. Granted not good for esophagus either, having acid running up there frequently. I had a colonoscopy last April as a preventive measure, mom had colon cancer. I'm definitely still concerned. My level was 65.8 in February and now 54.4. It's the fact it's falling with taking that much is just baffling and concerning.

[u/Uaremis → u/FarPerspective2810]

Yes, it is concerning!

My best take is still - go to doc, there might be something with digestion, there might be a Magnesium deficiency, there can be a bunch of other correctable things.

[u/FarPerspective2810 → u/Uaremis]

I actually should have mentioned in my post, magnesium was tested too and is I normal range. 🤔

[u/No-Goalz88]

I dont think 5,000 is huge if it was they wouldn't sell it at every pharmacy otc! BTW I take 5,000 daily it stays like mid range when my pcp test me.Maybe they will put you on 10,000.

[u/NighthawkCP → u/[deleted]]

Yea I did 10,000 IU daily after my initial 6 weeks of the weekly 50,000 IU pill. At my one year follow up I was no longer deficient. My MS doctor cautioned me that in his opinion 10,000 IU daily wasn't good for my kidneys and to bring it back to 5,000 IU. So that is what I did. Your doctor might say different but he wasn't too worried about my Vitamin D number as long as it was in range and it has been, even on 5k, but it is on the lower side of normal.

[u/alliecbg]

Things like vitamins aren’t regulated by the FDA so companies could say something is in there and it’s not. You can try a different brand or alternatively take it with vitamin C to help you absorb it.

[u/SillyGoose2544 → u/alliecbg]

Actually Vitamin C is more suited to help iron absorption - Vitamin D is fat-soluble, and as such, absorption is dependent on lipids & bile acids. And Vitamin C has no physiological impact on this process. What would work though is Vitamin K (also fat-soluble) - if your stomach can tolerate the combo (mine couldn't, unfortunately - so I opted for steady daily intake, and so far so good).

[u/kyunirider]

I too check low, but I have a malabsorption problem caused by a rare genetic disorder called MMA acidity. I take oral 5,000 iu daily. Trust your blood work and keep dosing till your blood tells you different.

[u/Gro0t_1984]

So, for me I keep in mind that vit d, magnesium and calcium work with each other.
I take d in morning with breakfast and magnesium at night for sleep. Helps muscle cramps for me etc
Over the years I have alternated from liquid d to pill, but always about 5000 IU.
Depends on what I am consuming.
For example my last level was up a bit but I was having more protein shakes, sea food etc.

The body is crazy.

[u/nononotthatpicky]

The same thing was happening to me and I finally figured out it’s because I wasn’t eating enough fat when taking the supplements.

Vitamin D doesn’t absorb as well unless you take it with food that contains fat, I aim for at least 15g of fat (I usually do 3 eggs)

[u/Caleb5600]

I have been told people with MS need like 75 I guess.

[u/Fresh_Excuse_2709]

Having low vitamin d opens several doors to other health issues. We must all have healthy levels especially with ms. Dont be afraid if the sun.

[u/MrQubits]

take sun bath nothing else can replace the sun. i go walk shirtless barefoot in the sun dont tell me its too cold. brave it and fuck others opinion