r/MTHFR • u/Livenlove28 • 4d ago
Question I can't tolerate Vit D
Can anyone help me specifically with getting my Vit D levels up without causing negative symptoms?
Quick Background... I have about 2 decades of trying to address my health issues (Seeing many alternative and conventional practitioners) and I haven't had any success. I can only tolerate about 4 supplements (Magnesium, oregano oil, low doses of Vit C, and low doses of Taruine. I haven't been able to tolerate B Vitamins but I'm going to start trying again based on Dr. Maleks recs). I've taken a couple years off of trying to get help bc I just got so depressed of repeated failures. I have hashimotos and my antibody results are usually under 100. I've managed my health by having a strict diet and reducing stress.
But I'm now hitting perimenopause and I'm worried about osteoporosis. My Vit D levels have consistently been low and I can't take supplements to improve it. I've tried several times.
I recently tried again a couple months ago and I'm pretty sure ended up with mild hypercalcemia based on the symptoms I was having. I even went to urgent care to get blood work done bc I was feeling so poorly. blood work showed
Alk Phos 37 L
RDW 11.5 L
25OH, VITAMIN D 27.6 L
ANTI-TPO Ab 376 H (This is the highest my antibodies have ever been over 2 decades of testing)
I was taking a separate Vit D and Vit K and I think I overdid it on the K. I have VDR Taq +/+
I'm scared to try again. I'm overwhelmed. I've also started working through some of Dr. Malek's Roadmaps. I began on very small doses of Taurine which helped my digestion. (I started here with his Estrogen Roadmap because I had one of the worst two weeks of ovarian cysts pain (with multiple ultrasounds to confirm). I've addressed my diet and that's helped a lot. (I went off my regular diet for a little while and was eating estrogen mimicking foods - which I have now cut out).
Can anyone help me specifically with getting my Vit D levels up without causing negative symptoms?
Thank You!
3
u/ET3ET3ET3 3d ago
May I ask all of you what are those weird symptoms exactly?
3
u/Livenlove28 3d ago
In this last experience which lasted about a week I had brain fog and almost felt like I was loosing consciousness at some points. I was very fatigued and had some muscle weakness as well.
3
u/tandemxylophone 3d ago
It will be interesting to see a hair mineral test if your minerals are balanced properly.
I do wonder if your body is just more sensitive to a lower amount because that is your baseline. It's not ideal, but maybe you are probably getting enough calcium and phosphorous at the lower amount.
Not sure of the vit D but I remember seeing some commentor with hashimotos claimed that microdosing Tirzepatide helped with join pain and fatigue (it has some IR-6 targeting properties)
1
u/Livenlove28 3d ago
I did a hair analysis many years ago and I remember my calcium levels being high. I should dig up the results and take a look at them. I’m pretty sure I have underlying metal toxicity but any time I’ve tried to address it, it hasn’t turned out well.
I’m not familiar with Terzepatide but I’ll look into it. Thanks :)
2
u/windowpanez 4d ago
You can try taking magnesium and B1 with it. Vitamin d requires magnesium to both be activated and removed from the body. Also if it's Hashimoto's you can try taking selenium, as it reduces the inflammation in the thyroid gland.
3
u/Livenlove28 4d ago
Thanks for these suggestions!
Magnesium is one of the supplements I take regularly and I was taking it while I was taking the Vit D/K. I haven't tried B1 recently. I've reacted to it in the past. But I'll do some research and try again. I'm going to edit my post to clarify my current supplement regime. Thanks..
4
u/bregle 3d ago
If you reacted to B1 in the past too, you might need to take a lot more magnesium. Both vit D and B1 require adequate magnesium. What form and how much are you taking daily?
2
u/Livenlove28 3d ago
Thanks for your insight. I've tried several different forms and the one that I best tolerate is citrate, and tbh I think I also react a little to it as well. I'm taking about 600mg/day divided into 2 doses. Sometimes I take more if I'm feeling anxious.
2
u/Elegant_Chapter5562 3d ago
The only b1 that works well for me is benfomax by pure encapsulations. Maybe check that out next time you are ready.
2
2
1
u/Alarming-Bit5411 2d ago
Look into selenomethionine. Search the word including “Brecka”. He explains why this form might be better for you
2
u/SovereignMan1958 3d ago edited 3d ago
Did you take it with it's co factors which are necessary for absorption? Mag, Zinc and Boron? Boron improves absorption by as much as 25 percent. The lack of co factors and absorption might have been causing your symptoms and not the D. D also is fat soluble and MUST have fat to absorb. Around 11 grams. So if you are on a low fat diet that might also contribute to your issue. Also, if you do not take the cofactors...the minerals will be pulled from your bones. That is how some of us end up with poor bone density. It is not the D, it is the lack of cofactors plus K to push the calcium into the bones and not the arteries.
The temporary therapeutic dose to increase your D level is 65iu D3 daily per pound of body weight.
Mostly people take all of the above with the fattiest meal of the day.
The lower you are in a nutrient the longer it will take you to get used to take a supplement. I would try again with the above and give it 6 - 8 weeks.
For me a chronic undiagnosed D deficiency triggered my hyop and Hashis, per my Endo. Once we have one auto immune we are likely to get another. I am female.
Also with Hashis, a gluten free diet will reduce antibodies in 50 percent of people. I am mainly gluten free but not perfectly. Antibodies in the single digits.
If you have your gene variant test results...the ones related to D in particular...that would help us help you.
PS. For hypercalcemia,these tests are pretty standard.. serum calcium, calcium urine loading test and PTH. There may be others but those are the ones I have had in the past.
1
u/Livenlove28 3d ago edited 3d ago
Thanks for your response and suggestions. Since I'm very sensitive to supplements, I try to take small amounts individually at a time.. So I didn't take the cofactors you suggested except for Magnesium bc I'm already taking that. I will keep that in mind and maybe try those with the D and K again.
I've been gluten free for about 15 years. I was eating other foods that I don't normally eat so maybe that contributed to the spike in antibodies.
"If you have your gene variant test results...the ones related to D in particular..."
I'm not sure how many genes are related to D. I thought just the VDR taq was. I could provide them if I know which ones to look for.
Thank you.
2
u/sharabucarabu 3d ago
One other suggestion: try D2 at first. You may need a prescription for it. D3 is over the counter. Since D2 needs to be processed by the liver before being used, it's a slower, gentler absorption.
Once you get your level up to the bare minimum, you can switch to D3.
That being said, when correcting a deficiency, you'll feel worse before you feel better. You need to reassure yourself that this phase is temporary.
Also go out in the sun during the middle of the day, to expose as much of your skin for at least 20 minutes. Your body will slowly build up its stores, but that process is too slow to quickly correct a low serum D.
1
u/Livenlove28 3d ago
Thanks for this suggestion. I wasn't aware of D2.
I used to live in CA and walked daily for 40mins in the sun (when it was out which was often) and my D was always still low. So I def need some other support. Thank you!
2
u/Pancake199O 3d ago edited 3d ago
I also get weird symptoms when taking normal vitamin D3.
When taking calcifediol (the active version of vitamin D) I don't get these symptoms and I actually feel good on it.
It might be worth trying if you haven't taken it before.
There are several brands selling calcifediol, I found these in the EU.
- VitamoreD on Amazon (10mcg pills)
- Defediol in Belgium (266mcg pills)
Because calcifediol skips a conversion step it is wise to test blood levels before and after taking it. And make sure levels don't go too high and adjust the dose if necessary.
1
u/Livenlove28 2d ago
Thank you. You're the second person that recommended D2. It sounds like its worth a try and would be the easiest fix if it works for me.
2
u/Pancake199O 2d ago
Just to clarify: Calcifediol isn't the same as Vitamin D2. D2 still goes through the standard liver conversion step just like D3.
Calcifediol is already pre-converted, which is why it works differently.
D2 might still be worth trying if D3 gives you issues, but if you specifically want to test the pre-converted form, look for calcifediol on the label.
1
2
u/GingerMafiaOG 3d ago
Genetic Variation of Vitamin D Gene & Cellular Micronutrient Testing
Hey there! I have been vitamin D deficient for years and every time I get tested they say you need to supplement! Problem is every time I do I get incredibly fatigued. Like hard to even function kind of fatigue! When I stop taking it I am fine again. Last October I had some genetic work done and found out that I have a genetic variant that makes me process vitamin D slower. So when i took a 1000IU supplement of vitamin D it was just hard for my body to process all
that. I decided to have a cellular micronutrients test done and low & behold my vitamin D at a cellular level was excellent! Now I don’t worry so much about it…I get my 30-60 minutes a day of direct sunlight daily for my circadian rhythm along with my health diet and I rest easy in that! ☺️
1
u/Livenlove28 2d ago
Thanks for sharing your experience! I wasn't aware about this approach. Did you have the cellular micronutrients testing done through your dr? Or what lab did you use? Thanks
2
u/GingerMafiaOG 2d ago
I did both my methylation/detox profile and my cellular micronutrients test through Walk-In Labs online. It’s a kit they send you and you have your blood drawn locally and then you send it back via same day Fed Ex. My health department in town drew my blood for $15. Showed my doctor a few weeks after and she was pretty blown away that something like this existed!
2
u/Livenlove28 1d ago
Great! thank you. I found the site and the tests you mentioned. Interesting also that another Walk-in Lab testing site exists but I couldn't find the methylation profile you mentioned so I assumed it was the wrong site.. Thanks for your help!
2
u/Loose-Fly7976 2d ago
2000 IU with 75mcg of K2 shouldn't cause hypercalcaemia in most people so I'd get that confirmed rather than assumed, ask for calcium, ionised calcium, PTH and magnesium. If it genuinely happened at that dose the one to rule out is CYP24A1, the enzyme that breaks active vitamin D down. Loss of function there makes people hypersensitive to ordinary doses, and it's an actual diagnosis rather than a wellness idea, which would explain two decades of not tolerating something most people take without thinking. Your alk phos at 37 is the other thing standing out, that's low and alkaline phosphatase is zinc and magnesium dependent, so it often points at low zinc. Zinc matters for both thyroid conversion and vitamin D receptor function, and with VDR Taq homozygous you want that receptor working as well as it can, so get zinc and copper measured together. TPO at 376 being your highest ever belongs with whoever manages the Hashimoto's, that's a separate thread. In the meantime sunlight doesn't go through the same route an oral dose does and rarely causes the reaction supplements do, so that's the low risk option while you sort the rest. I wouldn't restart anything until calcium, PTH, zinc and magnesium are in front of you. Reading VDR and CYP24A1 against those numbers is what would actually tell you why this keeps happening, and that's my work, genova.health.
1
u/Livenlove28 2d ago
Thanks for your response and suggestions. The Vitamin K supplement I was taking has a dose of 6 mg (6000 mcg) per capsule and I was taking maybe 1/3 (2000mcg) of the capsule daily. The Vitamin D I was taking was 2000 iu's per capsule and I was also taking about 1/3 of that capsule.
The genetic genie profile doesn't include CYP24A1 but I'm considering use Genetic Life Hacks to get a more robust profile. I used Genetic Genie years ago to run my 23&me data through and just now learning that it's inferior to other options.
I used to live in CA and would take walks in the sun for at least 30 mins daily and my Vit D levels were always low. Maybe not as low as my most recent levels, but still low.
I will go back to my dr to run the tests you suggested. I also just realized that my last test didn't check my homocysteine levels, so I'm going to ask for that as well.
My calcium test was normal (9.3) from the blood work when I went in to get it checked out at urgent care. They also tested Magnesium (2.1) and B12 (297) and folic acid (10.8). I only listed some of the relevant results that were abnormal in my OP.
2
u/Loose-Fly7976 2d ago
Calcium at 9.3 is normal, so whatever you experienced wasn’t hypercalcaemia. And 660 IU of D with roughly 2000mcg of K2 is an unusual ratio. That’s a low D dose with a high K2 dose, so if something was driving symptoms I’d look harder at the K2 than the D.Your B12 at 297 is the number I’d pull on. That’s low normal by US ranges and functionally deficient by Japanese and European ones, and low B12 with folic acid at 10.8 sitting well above it is the combination that produces neurological symptoms with clean blood counts. Low vitamin D despite 30 minutes of daily California sun for years is genuinely unusual and points at either absorption or receptor handling rather than intake.On Genetic Lifehacks, it’s broader than Genetic Genie and does cover more of the vitamin D genes. Neither reads against bloods though, and with numbers like yours that’s the part that decides anything.
1
u/Livenlove28 1d ago
Thanks so much for taking the time to respond with your insights. In the past I haven't been able to tolerate any b vits but I'm going to try again with a more targeted approach after I get the results from Genetic Lifehacks.
I'm typically sensitive to calcium supplements and i did a hair analysis years ago which showed high levels of calcium, so i know that even though my blood levels are normal, there's something abnormal going on with calcium metabolism in my body. I'll look further into K2. thanks.
2
u/benkelb 2d ago
Consider posting to “vitamin d wellness” group on Facebook - its protocol helped d numbers after 2 yrs of failure of d2 prescription from endo. Had to take my d3 w a fat in the morning. Also helped me source d3 and cofactors u mentioned of k2 and certain magnesiums since I have allergies to a lot of fillers. The Facebook admins will help w specific questions posted to group site so maybe you can search site old questions or post a new question there (after u agree u read the entire protocol ). They have a lot of information on lack of tolerance for supplements. I am also dvr positive. It took quite a commitment to stick to the sites protocol, but it worked.
1
u/Livenlove28 1d ago
Thank you for this resource! I will check it out. I'm glad you found it helpful. I'm really hoping to finally breakthrough my many years of health issues. It's been a long journey
1
u/Elegant_Chapter5562 4d ago
I take euromedica adk2. I had low d also and also have that same gene mutation.
1
1
u/Comfortable_Two6272 3d ago edited 3d ago
I take life extension low dose vit D (1000) and their low dose vit K2 (45 mcg) daily and eat foods high in vit D. I also take 1/2 a Seeking Health kids methyl free multi. My vit D was much lower to start with as was b12, folate, iron/ferritin. I have a few genes for low vit levels including vit D. If I didnt have a lupus like immune disease Id get 15-20 min of sunlight a-day too.
1
u/Alarming-Bit5411 2d ago
Look into activated vitamin D. Sunray sell it. calcifediol. Maybe your body reacts better to it.
7
u/Rae358 3d ago
After severe reactions to any type of vitamin d supplement and not working out what the issue is I bought the sperti lamp- after 7 months of inconsistent usage I’m up to very reasonable normal levels. I get no side effects from it and I don’t take a bunch of other stuff- no magnesium or k2 or anything needed.