What level would you expect your active B12 level to be after five months of SI EOD? I’ve just done a Medichecks test and it has come back as 150 (range 37.5 - 187.5 nmol/l). It’s at a good level, but would you expect it to be higher. Or is it only the serum B12 test that shows as high after injections?
Also my Vitamin D came out better at 125nmol/l (range 50 - 250) following supplements. Do I still need to get it higher or perhaps cut back on the supplements. I’m currently taking 5000iu a day as my original levels were below minimum.
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Chickens44
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I have been taking vitamin K and also magnesium with my Vitamin D.
I’m getting a couple of good days then a couple of days where I’m shaky, flushing, weak again. Wondered whether I should cut back on D now, as don’t want to over do it. and I have read that it can deplete magnesium, so this may be causing my shakiness.
When you say high dose, what dose were you on? My nutritionist had advised 50000iu per week, split 10000 for 3 days, then 5000 for 4 days. My Levels had been below the minimum of 50 for quite a few years. But I think I may go down to 4000 per day for now.
Going by the new Endocrine Society guidelines, there is no reason to aim for a specific blood level of Vitamin D.
5,000IU is almost certainly unnecessary. Just supplement a reasonable amount over the winter.
Nackapan is correct that the tolerable daily upper intake level is 4,000IU. There is generally no reason to exceed this unless correcting a deficiency, which you are not.
there is one exception and that is if you have had your gallbladder taken out. In which case you will need to maintain a higher dose than the recommended. I was severely deficient, thus practically felt like death. but now I stay on a high dose, but for anyone I encounter asking about D that still has a gallbadder, I recommend they stay between 1000 IU - 5000 iu, the 5K in the winter when not getting any sunlight, 1K in the winter.
TBH I feel like stopping all of everything, (including all the digestive supplements) as it all seems to have a knock on effect. D depletes magnesium, so you need to keep that up, then magnesium can affect calcium levels, so you need to watch that, etc, etc. 😵💫😞. I just want to get back to some semblance of normality, it doesn’t have to be perfect, just okay.
well I had my gallbladder taken out, maybe I need to up my vit. D. I never knew that it would be affected. of course the Dr. never said anything just Ok your done. but have you had yours taken out too?
don't go by blood test, go by symptoms. What were your original symptoms and have they resolved completely?
What was the cause of your b12 defieicy (diet without meat or eat meat but still ended up with deficiency). I imagine if it's diet without meat, ask those who had b12 deficiency due to diet, how long it took them to get to normal.
Originally I was diagnosed with fibromyalgia, 20 years ago. My symptoms were fatigue, all over burning pain, tinnitus, but last couple of years have had lots of other symptoms too, anxiety, flushing, bloating, extreme fatigue. I was told I had B12 deficiency earlier this year by Dr Klein. Had iron infusion and started B12 EID SI. It’s most probably due to PPIs taken for too long and resulting gut dysbiosis. And some stress. I don’t have any autoimmune issues. I am a meat eater.
I would say my symptoms seem to come and go now, but not resolved certainly.
well thats good your active b12 is better now. I am just starting my sixth month inj daily but now this month my nerves in the truck of my torso like my ribs and mid upper back and side muscles are getting sore and nerves going off, these were not like this last month so it's getting more nerves to wake up or start reversing out. I remember these hurting like 7 years ago maybe when they were first getting affected by low b12. that's when I was told as well I had fibro mialgia too. I have also been able to have more energy this month as long as I don't over do it, then I feel it a couple of days later.
I keep getting random pains that come and go that I’ve had in the past. I had a really painful shoulder about 6 years ago and a couple of weeks ago I had the same sharp pain for a couple of days, then it disappeared!
I think my overall pain is improved, it’s more tingly burning now. And the extreme fatigue is better. I think my main problems at the moment are feeling shaky, internal tremors and loss of appetite again, these seem to come and go every few days. And I’ve developed insomnia. I feel like I’m tired, but I just can’t get to sleep. I used to be able to go to sleep as soon as my head touched the pillow.
So still some issues to resolve. Sometimes I wish that one of my tests would be show something, then I would at least know what needed addressing.
yes me too! over the last 7 years I was the same way with Drs saying I can't find anything wrong. but they never ran b12 in the past except a neurologist after I started sublinguals for a short period and my b12 was high. but I knew nothing back then and stopped the b12 . but the nerve pain eventually stopped maybe because the nerves were dying and now they are waking up and reversing out. but I have improved so much mentally. I remember when I had my crash I could not even go outside hardly or talk to anyone, then my nerves shooting off so bad . I think if my stomach could heal better I would feel better as well. but this all takes time and I keep trying to rush things. I have to keep coaching myself and stay in prayer.
I have a nutritionist and she has advised me to take loads of different supplements to take to help my gut. It’s all good stuff, and not cheap, so hoping it helps. I do feel my bloating and abdominal pain is much better, but my gut microbiome test is still showing I have some imbalance in my gut bacteria, so trying to resolve that. But as you say it all takes time and like so many others I’m too impatient.
Great post and a very relevant topic of discussion for us all - especially this time of the year.
I saw two registered dieticians and found them of limited use in the area of optimal supplementation.
I turned to a Functional Nutritionist who is qualified although often they are often not recognised by NHS and health insurance companies. I too was recommended a range of supplements which as you say Chickens are quite pricey.
The suggestion of a range of gut healing supplements from a Functional Nutritionist is hardly surprising as they are trained to look at Root Causes of a deficiency rather than just to address the symptom ie take a specific vitamin.
In April 2024, I started with the supplements recommended by the Functional Nutritionist, in a phased introduction and building up the dose over a two month period. By September my gut was much stronger and I have more energy and look healthy.
I had a set back after the colonoscopy in September and I was in agony and back to square 1. So I started the gut fixing nutrition again along with kefir and bone broth and by early November my gut is back to how it was before the procedure.
As regards vitamin D I keep my vitamin D in upper mid range ie above 50% and aiming for 75% ie 170 ng/L. When my blood test shows I have this amount I stop supplementing and then restart over the winter which I am doing now. I take 10,000 IU (250mcg) every other day throughout the winter. I will have a blood test in January to check my bloods.
It is very difficult to separate cause and effect when vitamin deficiencies are being corrected after years of decline and damage. I suspect a lot of “symptoms” attributed to vitamin supplementation are just as likely to be the body adjusting and healing.
It is important to be aware of the effect that too much vitamin D can have on calcium as already mentioned, but this effect doesn’t happen overnight, and strategic blood tests help offset this potential risk.
This article is interesting and I now know why as children we were give a spoonful of cod liver oil ( and caster oil!) daily during the winter months. healthline.com/nutrition/vi...
Personally, I find that keeping my vitamin D in the upper part of the range improves my overall well-being and the effectiveness of my B12 injections. I recover from knock backs more quickly and I seem to be able to do more and I am less tired.
So in essence Chickens it looks as if you are doing well with your B12 and Vit D. The vit D is likely to begin to fall now so I would consider increasing D3 rich foods in your diet and a modest D3/K2 supplement perhaps once a week?. Keep notes and check bloods again in the New Year. But as with all these things listen to your body which you seem to be doing.
These are her qualifications, so I think she knows what she’s doing.
‘Registered Nutritional Therapist and a member of the British Association for Nutrition and Lifestyle Medicine, which guarantees a high level of training and continual professional development.
I hold a master’s level diploma in Nutritional Therapy and a PhD in Immunology (specifically, allergy research).’
I understand that, she doesn’t just recommend stuff without an explanation as to why. She listens to my symptoms and overall health problems and looks at my microbiome test scores and then we try a supplement, if it doesn’t make a difference we try a different one. I don’t believe anyone can give you exactly the right thing first time, it all takes trial and error. The reason some of them are expensive is because they do what is needed and are not full of fillers. I do look at the products she recommends to see if I can get them cheaper and also what the effects and side effects are before I try them.
Agreeing with everyone here that maintaining a balance with all cofactors is a real challenge. I've just had a chest X ray for ongoing rib pain which I think is poor absorption of Vitamin D, but of course gp is just silent when I mention that (and the agonising shin pain that drove me to cal 111 a couple of weeks ago) as I am not technically deficient. Levels have gone down over the summer despite supplementing, which to me says there's an issue. But I've been reflecting recently that with 10 months of SI pretty much eod how much better I am feeling. Grateful to have so much more energy, clearer brain, less negative thinking and the constant low back and hip pain finally seems to be easing. I guess we just have to keep going and be prepared to tweak things as our lives and circumstances change. Thanks to all here for the kind of conversations, reflections and advice it is impossible to find anywhere else! 🙏
good to hear from you, well so is your vitamin D levels going down or that as well as your b12 too? my rib pain is new this month and front and back of ribs mostly on my right side but at times both. I feel the burn too in the muscle so I'm sure it's nerves waking up being worked on but man it sure does hurt. I just have to lay down when its too bad. yesterday I did great but today it's stomach again and ribs and back. so I'm resting a lot today and praying. I'm glad your getting better with everything else too.
oh yes and I bought a cream vitamin d that is from cod liver oil and emu oil, you rub it on the tummy and inner thighs, I can feel my nerves waking up when I use it at night. I also take a D2 D3 in my multi.
Thanks for your kind wishes JesusMercy60. Well, I've been supplementing Vit D orally but it's been going down, and this is over the summer. Rib pain has been grumbling for a while but got worse recently, feeling as though my organs are too big for my ribcage, very weird! Shin pain was excruciating a few weeks ago - my gp told me off for getting a Vit D jab privately but I was desperate. Seems to have helped, shin pain calmed and ribs are better. Haven't come across Vit D cream, will search. Glad you are also improving. Slow and steady wins the race!
I was advised to keep it to a minimum of daily activities for a year to allow healing and not crashing, so I am trying. I feel better on days and go see grandkids and run errands and chores then 2 days of that I'm feeling bad and hurting more. you sound like you are healing as well.
shakiness can be due to depletion of potassium that is considered as co factor . Atleast that’s what happened in my case , so had to consume potassium . Good measure of b12 is measurement of homocysteine or methyl malonic acid and MCV blood values . B12 serum value doesn’t give good status .
Consuming potassium is what happens when you eat (healthy) foods. Potassium is generally not going to be a concern uness anaemia is being corrected, in which case there is a short draw on potassium. Beyond a couple weeks into treatment Potassium would not really be a concern.
It's also possible to encounter potassium or other electrolyte issues if a very poor diet is followed.
The UK RDA for potassium is 3.5mg. It is not difficult to reach this for an active person eating mostly whole foods from plant sources. If someone has an irrational fear of carbohydrates, that is better resolved by becoming more educated about how nutrition works, than avoiding healthy foods.
Why would anyone need to be concerned about healthy foods that contain "mild to medium" amounts of carbohydrates?
I'm not concerned about carbohydrates, other than I had diabetes my 20s, which went into a remission so to speak but with me still being extremely affected by carbs and sugar. If I eat a high amount of carbs, I get sick the next day, I mean seriously tired, fatigued and nauseous.
thus for people who don't have that problem, they are fine. I don't eliminate them, I just moderate them;
however, how have you been able to get enough potassium in your meals, what do you eat daily?
Right!Lentils are a great source, legumes in general are great, I eat wholegrains, legumes and vegetables for lunch and dinner and a mixed muesli (4 kinds of rolled grains)with all kinds of different seeds and nuts for breakfast. Few pieces of fruit, and lots of berries.
Thanks for all the great replies and helpful information. I know sometimes it’s hard telling your personal stories, but it does help to know someone else has had the same sort of struggle with their health. So many people who are well almost roll their eyes when you tell them about a new symptom or treatment you’re trying, so you don’t talk about it.
Chickens44, I think your best bet is to do frequent injections daily or EOD and keep doing them. 5 months is barely enough to get completely well if you were below 200 before your first b12 injection (serum b12 as I don't have experience with active b12).
Like JesusMercy60 mentioned, minimize your demands and exertion as much as possible to allow for healing and avoid crashes. Ease into it more as you can tolerate.
It took a min of a year of daily injections to get to the point where I could exercise daily and boy did I ever, starting with 10 min a day for the first month or so, then increasing. Sometimes I would push the envelope and then crash.
I don't think potassium supplement will hurt, most people don't get enough. Just know that accute overdose of potassium can be DEADLY as in instant!!! as it regulates the heart. As technoid mentioned, get as much as you can from diet, but if you want try supplementing, keep track of how much potassium you consume daily and stay under 4-5 Grams daily. Be sure to use the right kind.
When I do supplement with potassium, I use a powder.
This is how I measure and keep track. It sounds complicated but after you calculate out the actual weight of the powder that gives the dose you want, using this formula, then you just have one step which is weighing the powder.
I put it in water and drink it. SLOW, VERY SLOW or it will make you nauseous.
Again, always keep track. or just do 1-2G of potassium supplement per day in 32 OZ of water.
And then see if it helps, if it doesn't, no need to bother supplementing but keep trying to get some via food.
Thanks. I don’t actually take a potassium supplement, I just eat a lot of the foods that contain it, like potatoes, avocado, spinach, salmon, coconut water.
I did paint a small shed the other day when I was feeling good! Uh, that was probably a mistake then. I do try and do two 15 minute strolls with my daxies every day, but some days at the moment I don’t even feel up to that.
I even find chatting with a friend for a couple of hours can have an affect too. I feel my life is passing me by and I so want to get out and live more. But I know from others experiences that this is the way it goes. I do envy people who say they’ve just had their 3 month B12 injection and feel great! If only!!
lectins (although they need to be soaked and cooked) to avoid lectins, can be a good source of potassium.
I would agree, just simplifying things down to just b12 or the things you KNOW you need to start with may be the best thing to do.
Get feeling better with the b12. It takes at least 1.5 years of supplementing to start going back to normal but you will get there. then start adding supplements one at a time.
It makes it easier to figure out what is going on.
Hang in there, have patience and don't worry about life passing you by. You are investing in you right now by giving yourself time to heal and THAT is important. It's a slow and gradual process, just like the depletion was slow and gradual.
I went from not being able to remember even one grocery item to now keeping 5-10 in my mind. I'll never be 100% back to normal but I'm functioning quite well. Kept my job and live life.
When at the beginning of the problem, I had a lot of people judge me. I learned to not care, but I wanted support and felt like I wasn't getting it. Finding this forum and a group of people here that were on the same journey, and thus understood me, was enough. Thus I'm dedicated to PAS and this forum like many others.
We all hope to see you
Feed free to whine and cry here on the forum any time, support is sometimes a good medicine too.
That’s a great reply. I am still in the FB PAS group, but you really don’t get this level of support and empathy with them, it’s all about protocol and getting told off if you don’t follow it. We are all different and what suits one doesn’t suit another.
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3yrs later and Active B12 Results
High B12
B12 level
B12 serum versus B12 active 
B12 Level falling 
