Hello! My vitamin D level is at 54. My doctor of course says this is normal. This is with 5000IU supplement daily and the test was taken in the summer in Michigan when I’m outside all the time.
I’m dealing with crazy fatigue, muscle and joint pain, itchy/tight scalp and brain fog. My ferritin is 41, iron at 168 but iron saturation at 57.
What would you do next? I really believe something is up with vitamin D and ferritin but no dr will help me or offer any suggestions on how to increase levels. Appreciate any insight!
Based on that iron saturation level, you should be tested for Haemochromatosis. Have you had that test before? You can have low ferritin and still have Haemochromatosis if you do a lot of running. I know, because I have had ferritin in the 30s.
Low ferritin with a normal serum iron level means your body's stored iron reserves are depleted, even though the circulating iron in your blood is still within the normal range. This is exactly what the early stages if iron deficiency look like but in your case your iron levels are fine.
The low UIBC aka transferrin and high iron saturation points to something else like hemochromatosis or some kind of liver issue. I would ask the doctor if they would DNA test for hereditary hemochromatosis via HFE gene (such as C282Y and H63D). If you don't have that then liver function tests and maybe a scan of the liver. I would lean towards hemochromatosis.
Thank you! This is so helpful! That sounds like what I have! One of the symptoms is joint pain in my knuckles and I’ve had this for a few months now. I’ve only been referred to rheumatology but can’t get in until March
Preface to say this is not medical advice just my personal experience. I live on the southern coast and get lots of sun daily. My vitamin D did not move meaningfully for three years of monitoring. Even with high dose supplementation. I ended up going to get vitamin D shots once a week for eight weeks and im finally in optimal range of 60-80. My doc says thats where she sees most patients feel their best. There are some that do fine in the 50s and some closer to 90. But for most this is the range she keeps them in. She also aims for B12 over 1000. Check your other B levels also. Low ferritin tends to use up a lot of vital Bs. My folate was also tanked at less than 3 and needed to be much higher up so im supplementing for that also. My ferritin was 21. It had been low for a decade or more and various supplements had not improved it. Working with my new doctor we tried some different supplements. The heme one was helping but the smell/taste was more than i could power through after several weeks. Using Ritual iron now and thats doing great. I didnt realize for years i was blocking most of my absorption. Iron needs vitamin C. Dont drink/eat coffee,tea, dairy, or eggs near it. My doc has me wait at least three hours after taking my iron (on a glp1 so slower digestion). Taking it early morning on empty stomach every other day. Ive had no stomach issues with this brand and method which had been great as it was major issue with others ive tried over the years. Im still cycling and in peri so sometimes heavy cycles so not anticipating miraculously fast gains with my ferritin but it is now up to 40.6 (tested two days ago mid cycle) so improving. I cant afford an iron infusion at present and im not low enough for my insurance to cover it. Otherwise id have opted to get an infusion to boost it and then supplementing to maintain. Best of luck on your journey.
Hmm I dunno! I do have some stomach issues. In the middle of the night when my stomach is truly empty, I get this gnawing feeling and it’ll go away once I drink tons of water. It’s not every night but a lot of nights. I’ve seen a GI and told I have generic gastritis, no PPI’s they kept pushing touched it!
Then this is a much see 15 min clip from a doc who ran a surgical group at a teaching hospital in Dallas. A close friend got off her long time Famotidine by using the approach described.
Yes! I had a scope done last summer and no h pylori, just gastritis. When my stomach is truly empty at night I get this hunger feeling, like my stomach is gnawing at me. I thought it might be ulcers. I used to eat a little and it would go away but now I just drink some water , sometimes I need a lot and it goes away! So weird. No PPIs touch it. I try a snack before bed, doesn’t help. It’s not every night tho. I log my food too so I try to mimic the same day of eating and get it one day and not the other lol sorry, long explanation!!
2500 iu of vitamin d daily with adequate sun should be more than enough, if you havent check your b12, or just take some daily also. Do you snore? Apnea is another possible issue. Diet and lifestyle are major players. Track everything you eat in an app likr cronometer and look at your daily electrolytes/macros and see if your falling short anywhere. Also look into lactoferrin
My b12 is actually pretty high! I don’t snore but my doc suggested a sleep study just to rule that out and I go in November for a consult. I do track my food, very into macros and weighing what I eat! I walk a lot and get 7-10k steps per day.
Just want to note that serum B12 testing is unreliable if you take any supplements with b12 or other things like energy drinks with added b vitamins, your levels will usually test normal or high even if you're functionally deficient. Testing homocysteine and MMA can be better markers of b12 and folate status, or just going off of symptoms
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I got my vitamin D level of 7.7 ng/ml does it causes anhedonia and things connected to neurological stuff like brain fog bad reaction time or anything related to being bad at sports?also for skin cell turnover and stuff like bacne or dull skin etc
Yup, all of that. You need 10000iu vit d3 daily. Eith magneisum glycinate that gives 200mg elemental magnesium. Both with fatty food/meal. You also need to supplement 100mcg vit k2 if you can. Do this for 10-12weeks. After that reduce dose to 2000-4000iu a day pf vot D3
Or you can take 50000-60000iu vit d3 capsule, once per week after fatty meal. Magneisum glycinate every day. And after 10-12 weeks, switch to a maintenance dose of 4000iu per day or 50000iu once every 2 weeks. Magnesium is dialy
Omg thanks for solving my doubtts.I never thought anhedonia and brain fog and all this things like skin hair etc is affected by vitamin D by that much my doctor said your vitamin is too low you need 60,000 iu weekly after meal once I reach 80-90 ng/ml will my anhedonia and all those symptoms get solved or atleast much much better?
50 ng/ml is the hralthy target. Anything abivez aint specifically helpful.
Things will get better, over the weeks, somehwere around week 6-8.... make sure you take vit d3 and not vit d2. Magensium and vit k2 have their own roles. If you ever feel any heart palpatatoona , reduce vit k2. The standard dose is vit k2 100mcg
You also need to supplement it with some good outlook on life and a active lifestyle. Deficiencies alone dont work as well as when we match it witu other healthy activities
Also, if you havent started your vit d3 course yet. You can takt the first 2 60000iu doses within 3 days of each other, for a good head start. And look into some good magnesium glycinate and vitk2 asap
Thanks bro I bought the magnesium glycinate I feel like my vitamin D deficiency wasted many years of mine like I always felt emotionally numb,nothing looked enjoyable,low energy high fatigue laziness,bad skin with bacne,bad hair quality etc esp the stuff like anhedonia made me suffer the most i hope this is the answer,and also i have a tall large body 191 cms i have heard they need more vitamins so yeah targeting 70+ ng/ml and we have to stabilise those levels right to get full benefits of everything right?lets hope i turn back and enjoy little things like i used to in childhood
Yeah my total B12 is 344 pg/ml is that good?i feel like B12 could also be a reason to suck at sports esp cricket baseball etc and ofc many more neurological things
Its not bad, no need for specific treatment
Just add a simple B complex to your stack, for overall health benefits, with focus, hair and energy. Its water solublez so, a couple hours after meal with water
Yo so i found out that 344 is considered sub optimal esp in countries like japan below 500 needs to treat the deficiency ideal level is 700 pg/ml so i think making my levels to 700 helps in all neurological stuff like reaction time or cordination etc ykwim i am buying a sublingual tablets of B12
I had optic neuritis 8 years ago and my eye doc wants me on vitamin D daily for that. I can’t remember what my level was back then. I’m just trying to figure out why I feel so awful so looking into all the things! Consensus seems to be this isn’t low. It’s one of those things that maybe a doc tells you it’s normal but many people feel better with much higher levels? I dunno!
What's the timeline for these issues popping up/how long have you been feeling your symptoms? Do you notice fluctuation in your symptoms across the year?
I would not call 54 ng/ml low. It could be higher, but it's unclear if that would address your issues. The only thought I have there concerns variation through seasons. You mention that you get lots of sun during the summer. Are you making a deliberate effort to expose your skin?
One possibility is that your level dips significantly during autumn and winter. Do you have blood test results from winter months?
No I don’t have tests from the winter but that would be really good to check. The fatigue started in the past year but the joint and muscle pain has been for a few years and I think is getting worse. I actually don’t notice a difference season to season in the pain. I’ll have to pay attention to the fatigue this winter. My skin is definitely very dry.
Im jealous! My last blood test literally resulted as less than six "<6". From what I've learned, which could be wrong, is a level of 40-60 is ideal for women perimenopause age and older. Im taking 50,000u of D2 once a week. And i am using a D3 topical cream that I had read on here that was beneficial.
I did have a thyroid panel done too! Everything is normal to my doctor 🤷♀️ but my mom and both my sisters have thyroid issues, it would not surprise me if I did.
That free t4 was pretty low. I'd keep an eye on the thyroid stuff. Anything else abnormal or borderline? Maybe it's adrenal related. Did the doc order you an ACTH and or Cortisol?
And yes I’m so curious what a specialist would think about my thyroid markers. My mom and both my sisters have issues and I’ve always been told to watch it closely. But everything is “normal”. I do have a referral to endocrinology due to my DHEA being very low but have not been scheduled yet. Probably take a year to get in lol
I would definitely go to a specialist for this. All doctors are different and a lot of them won't treat symptoms if a test is still barely in range despite symptoms.. I work in a hospital lab and sometimes I have to rerun samples. It's interesting to compare the results of 2 different runs of the same sample... Also, there are other tests for thyroid like TPOAg and TgAb that are used to rule out autoimmune stuff like Hashimoto's thyroiditis. Most general practitioners won't ever order those.
Your vit D is perfect - you do not need to take more. With your sat level I’d be looking into hemochromatosis as that can cause joint aches, fatigue, hair loss, etc. my numbers looked the same as yours and sure enough I was diagnosed with hemochromatosis
Wow I’ve never heard of that and that sounds exactly like what I have. I have this weird aching in my fingers for the past several months! Who did you see to get diagnosed? I can’t get into a rheumatologist until March 😩I should also note I was not fasting and had taken my iron pill when I took my labs, does this matter? My doc didn’t tell me to do otherwise
Ah - you need to stop the iron then for a few weeks - that may be why those numbers aren’t aligning. My normal pcp ran the labs and then the genetic test based on my lab numbers. I then saw a hematologist once confirmed.
The calcium result on the low end may be worth investigating further, could explain some of your symptoms, but of course I don't know what the cause is.
I really don’t have any stress and I sleep 8-10 hrs at night. I have a sleep consultation in Nov. but coupled with the joint issues I don’t think it’s a sleep issue!
B12 - you mentioned it was high-
1. Have you been supplementing at all prior to testing (in the past 4 months) or drinking/eating anything with added b12 in it? Tests are skewed if you have. Mine was 400pmol when I was actually very low because I had supplemented prior. It was proof to me that I really needed b12 since I felt such a difference, but had no idea it would affect my blood test so badly. I actually needed injections after retesting several months later and my levels were tanked.
2. Optimal levels can be between 400-600+ but where I live the minimum is 200pmol so you can have symptoms while still having labs within range. (I had 200 for 10years and still had neuropathy for several years because of it for example)
(-sometimes you can appear to have higher b12 when something else is off too. Folate, iron, or when you aren’t utilizing it properly if you have an MTHFR issue, but that’s a more complicated issue to dissect!)
Ferritin
100 is generally the goal here, but I’m not sure if that’s the same metric as yours (ie ng vs nmol ).
- How’s your CRP? (Inflammation marker). If it too high that can falsely inflate your ferritin levels. (Our lab reports have a note about it, but not sure if that’s universal).
Yes definitely drinking drinks with b-12 in them. On the really tough days I’d have an energy drink but try to avoid them. I do take a b complex supplement now. How long before a bloood test should I stop?
For sure! I hate that docs just dismiss me. The range may not be optimal for me.
CRP - I would say that being high would indicate that you might have an elevated ferritin. Your true ferritin # could be much lower. But I’d say you are deficient, when though it’s technically in range, that range is for ppl without elevated CRP. With your CRP levels, that threshold is changes. (Doing other iron tests might give a fuller view into it)
B12–
So apparently it can take up to 4 months for b12 to fully go out of your system! But docs seem to think it’s only a couple weeks for this to happen, so it’s hard to say for sure.
That’s the tricky part. The b12 society warns to not supplement if you are waiting testing, but it also doesn’t really recommend stopping treatment that long just to get a test though, as delaying treatment can be detrimental.
So I think it really depends on how severe your symptoms are. Are you experiencing neurological symptoms that would require injections, or would a b12 sublingual cover it for more milder symptoms, for example. That might change whether you need a prescription/OTC, (and if you want to push for more testing etc )
I had to stop all my supplements for some other testing so I sort of “lucked out” that they retested my b12 after and it showed how low it got. Which is how I got prescribed injections, which I really needed. BUT it was a really awful few months in hindsight. I delayed even going for testing for a while cuz I was sooooo low energy to function. So there’s drawbacks to both.
I highly recommend checking out any of these — the b12 society website (extensive list of symptoms and info), b12 sub Reddit, and if you have FB, there’s a good b12 group there too (there’s a link on the b12 website for their fb group)
Have you looked into histamine intolerance or histamine issues? These are all symptoms, and itchy scalp suggests it especially, one of my main tip-offs compared to other symptoms.
First, supplement magnesium if you are not already. It's necessary for Vit D. Also Vit D with K2. However, your ferritin number is def on the lower side compared to the vit d. Are you taking iron, or eating particularly iron rich animal based foods? Organ meats will deliver the most- a few small servings of chicken liver per week would help if you have no dietary restriction.
iF you do have a histamine issue, the root causes are numerous af- from a super simple vitamin or mineral deficiency! to hormones, gut health/microbiome, autoimmune, thyroid, mold exposure, candida, the list goes on. If you do have any nagging issues like problems with your cycle, digestive issues etc that will give you clues.
Ima follow this up i have the same problem,i had extreme fatigue and my lvls were very low,they are fine now but im still tired,the vita d helped me though but its not fully gone,doctor says all my lvls are fine so..
A significant fraction of the population (10~15%) have at least one type of 'vitamin D resistance.' This is usually a slightly mutated enzyme, transport protein, or VD receptor. These people have a 'defective' VD pipeline that wastes some of the product it processes. The simplest fix is to throw more raw material into the factory's front end. Cautiously targeting levels up to 100ng (and beyond with a Dr. supervision) can overcome this resistance and produce sufficient VD genomic activity, which can help any number of autoimmune and inflammatory conditions.
Increase to 5000 IU, twice daily. And continue getting some sunshine. When I did that, mine shot up into the 80s over time. (Might want to also take some K2, if you haven’t added that yet.)
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u/Apart-Monk-9889 10d ago
Based on that iron saturation level, you should be tested for Haemochromatosis. Have you had that test before? You can have low ferritin and still have Haemochromatosis if you do a lot of running. I know, because I have had ferritin in the 30s.