Feeling pretty discouraged right now…was advised to stop vitamins in August..and now everything is back to being awful! Especially disappointed by my ferritin…I’ve been feeling extra tired lately so that explains a lot.
B12 levels were originally over 1000+ in July too so they’ve plummeted too.
I have no idea what causes my near constant anemia? I don’t have periods at all, let alone heavy ones and eat red meat regularly. It’s not hypo that causes it cos this was an issue long before then.
Urgh what a mess
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Who told you to stop supplementing? No wonder you dont feel good with those levels.
What were you taking before? Looks like its time to restart and never stop the B complex & vit D. You may even need a separate B12 sublingual with those results.
You may not feel great and discouraged at the moment but at least you have something positive to work on whcih should produce good results.
Maybe you just dont absorb iron well. Might help you to add in vit C to help absorption.
Thanks for your reply! My endocrinologist advised to stop over summer but I haven’t been able to see her again yet and waiting on an appointment this year sometime.
I’ve been feeling extra bad lately but makes more sense why now!! Before I was taking pink tribe b complex, methyl folate, vit d spray and three arrows iron. I’ve been feeling mega down and depressed lately too which is so unlike me!
I’ve just ordered some more pink tribe and sure I have some sublingual b12 left over! Thank you, I’m gonna get cracking on it all tomorrow!
When would be sensible to test again after supplementing?
Yes I was tested for coeliac nearly a decade ago and was given the all clear!
Doctors get no training in nutrition, so best take anything they say about it with a pinch of salt. Once you get your levels back up then just keep going or you’ll be right back where you are now.
Restart all of them. B12 for a week then add b complex back in.
Yeah. They just spooked me by saying my b12 was too high and that supplements can do more harm than good but I guess if I’m monitoring and I need them to keep me optimal then they can’t be doing harm!
Could supplementing help to bring my CRP down as well perhaps? It’s not usually that high and I’m worried abput it now!
There may be other B vitamins that can be taken without worrying about dose or level, but I'm not sure. But one thing I do know is that vitamin B6 can cause problems at high levels. And the dose that can be taken safely every day is really quite low - about 10mg per day?
Both deficiency and toxicity levels of vitamin B6 can cause peripheral neuropathy, which can be very painful.
Oh, and this list is useful when choosing B supplements :
I have PA so get jabs via NHS, they shouldn't bother testing my levels because there is no point but occasionally an over zealous or misinformed GP has snuck a B12 test in and mine are so high they cant be tested accurately, they are north of 2000.
I'm not dead yet, B12 is a water soluble vitamin so any excess is just excreted. As the others have said nutrition isnt taught or well understood by most doctors.
Thank you for reassuring me! I essentially felt I got a lecture from endo about unnecessary supplements….but looking at these results it certainly was neccesary! He also pushed me to try metformin which ironically depletes b12 but he didn’t tell me that. I managed to only take it for 2 weeks as it made so violently ill and feel so unwell. It just destroyed my gut and gave me the worse constipation of my life (tmi soz!)
My D and iron are always scrapping along the bottom of what is acceptable too…I defo feel a bit of improvement when everything is higher!
I see humanbean has responded on this point, but, I wanted to reiterate that there’s no toxic dose of B12 and any excess will be excreted by your body. The dr who told you otherwise is doling out misinformation which could frankly prove damaging. Please, please accept that the importance of B12 for overall well-being is understood as well as thyroid conditions by mainstream drs. As in, shockingly badly.
I think your B12 warrants further investigation and I’d go as far as saying you shouldn’t supplement yet, rather, use this baseline opportunity to pursue additional tests. I’m in a real hurry right now and my brain is on permanent go-slow, but, I’ll send some more info over later.
I’m shocked it fallen so sharply! My levels were over a thousand not so long ago!
I can forward in these test results to my GP but I know they will just say ‘all normal’ and tell me to get lost I don’t have the energy or stress tolerance to argue anymore.
My total blood counts are always normal too.
Im not sure I can wait to start supps as I just feel like complete garbage (and that’s putting it politely!)
Sorry for the brief/delayed response, Thursdays are always so busy.
I implore you to watch this. Dr Andrew Klein is probably the foremost authority on B12 deficiency in the country and is highly regarded to boot.
I hope you find it interesting and even helpful.
As you’ll see, one of the tests for B12 deficiency is what’s known as the MMA and it’s strongly recommended that it’s done without supplementation. An active B12 test is also a good idea, that too should be done prior to supplementation.
I don’t think that YouTube link worked, I’m way too tired and foggy of brain to remember how to correctly embed them however, here’s a link to a post from the pernicious anemia site which has the video link that does work (you just need to scroll down through the replies to find it)
Can a GP do it do you know? I’m just wondering if I can summon the energy to fight with them about it or if it would be better to wait till my appointment with consultant endo later in the year🤔
Feel like GP has just stopped listening to me now and feel like I have hypochondriac labelled on me! I feel humiliated and patronised when I see them tbh
In theory your GP could order an MMA test, yes, but convincing them you need it is another matter. You can do a home test and, from a quick Google, I see medichecks offers it but it’s quite pricey. There’s also a company called NeoVos who offer a urine-based test. They’re quite a bit cheaper.
Before considering an MMA test it might be a good idea to test your Active B12 because, if that’s low then you’re basically deficient. Medichecks’ test costs £39.
You might want to consider completing this quick health check from Dr Andrew Klein’s website, to check for specific symptoms
They won't do it lol and tbh if I can test privately I'd rather...even if it's pricey! I'll order an active b12 and see where it's at first considering how i feel i'm guessing it's low!!
is it the medichecks pernicious anemia test that covers MMA? it pricey but id happily pay money to avoid my GP.....
The pernicious anaemia medichecks one tests 20 biomarkers including active B12, MMA and pernicious anemia antibodies so, when you factor in the £35 blood draw, is probably better value than their stand-alone MMA and active B12 tests.
Just be mindful of products which are fortified with B12, such as some oat milks. It’d be good to avoid them prior to testing.
Have you looked at the symptoms associated with B12 deficiency?
Re B - I just recently came across an article that put my mind at ease that there effectively is no way to take too much B. (Within reason : ) )
I can’t find the article I originally read - but a simple Google returned the results in the image attached.
Regards iron… I take 2 Three Arrows a day and it has over the past year raised my ferritin from single digits to mid 30s (keeping other iron measure perfectly Goldilocks). Return to 3 Arrows, no C necessary for heme absorption. Dont be dismayed if you need to supplement iron consistently to keep things up.
Also don’t be depressed, this one is easy!!!! You simply need to do whatever supplementing you were doing before you stopped.
3-4 months for testing, sure, but you won’t have to wait that long to creep back to feeling better.
I was just so shocked things had declined so much in a few months! I defo think you’re right and I’ll have to take iron long term and monitor how it all goes!
Back to three arrows pronto!! (And everything else!!)
FallingInReverse , have you ever experimented with taking iron supplements every other day? The research seems to suggest better absorption that way. pubmed.ncbi.nlm.nih.gov/314...
The original study I read which I don’t have in hand had a flawed study design. It did a total amount of iron given either daily or alter at days, ie, the alternate days people took it for twice as long. So that study was misleading.
But the study link you sent seems pretty solid.
total iron absorption from a single dose of 200 mg given on alternate days was approximately twice that from 100 mg given on consecutive days.
There is no doubt the 24 hour hepcidin window is real, btw. And yes - this study is pretty conclusive! Same time period, same iron, double the absorption.
I’m going to take a closer look at the charts in the research.
Overall alternate day appears inconclusive … inconclusive enough for me to not rock the boat on my balanced intake at the moment : ) Some studies say better some say same. For me consistency helps - ie, even though hepcidin is blocking , it’s doing so consistently and so I’m already adjusted for it regards to both iron and other vitamins I take.
The science/biology is accurate, in practice it still feels like six of one half dozen of another.
There is no significant increase in hemoglobin level and also the iron indices namely ferritin, hepcidin, total iron binding capacity, and reticulocyte count between daily and alternate-day dosing of iron. However, the frequency of adverse effects especially nausea, metallic taste, and altered bowel habits are reduced with alternate-day dosing. Oral iron given daily or on alternate days did not have a significant difference in the hemoglobin levels though iron absorption may be affected in the initial few days.
Effectively, you have demonstrated that the conventional wisdom about B12 is plain wrong.
The standard, naive, view is that once your B12 rises, you will store lots of it in your liver. Possibly enough for several years.
That your taking oral B12 made your blood B12 rise significantly is good and shows you can absorb B12. But that it dropped so fast is because no-one stores enough B12 for years and years.
What happens is that B12 should get recirculated.
Like a small water feature in your garden. The pump makes a fountain or a waterfall. The water is collected at the bottom and recirculated.
Some disappears - evaporation or droplets blown by the wind. But the actual amount you need to top it up is far less than the waterfall carries. So it looks like the waterfall is like a tap permanently ON. But that is only because of the recirculation.
Same with B12. Our modest store acts similarly. The appearance of many years of stored B12 is an illusion. Just like our garden waterfall is nothing more than a sort of conjuring trick.
I suggest something is preventing your body from properly and adequately recirculating B12. And you absolutely HAVE TO continue taking B12 - probably indefinitely.
If ever you found out why, and that issue was addressed, you might be able to cut down or stop B12. But I take the view that the risk is probably not worth taking.
Kevin Byrne - The Enterohepatic Circulation of Vitamin B12
A link to a PDF document on the B12info.com site which explains why even those receiving large quantities of B12 end up losing it very quickly.
Thank you for sharing Helvella! V informative and gonna have a proper read through links later!
I’m glad Atleast I can absorb it properly- some good news! I do appear to absorb all supplements pretty well and quickly thankfully so hopefully I won’t feel like garbage for too long!!
I suggest something is preventing your body from properly and adequately recirculating B12. And you absolutely HAVE TO continue taking B12 - probably indefinitely.
In regards to this… the only other issue I have is PCOS so perhaps that impacts this? I also have a couple positive autoimmune tests so perhaps that is relevant too (altho no dr seems to give a flip about those results!) 🤦♀️ my gp was very quick to suggest lupus in 2020 but now they say it’s not/unlikely. Could hypothyroidism be the cause of it possibly?🤔
Hmm. I know PCOS can affect the liver and my liver test results are often abnormal…but apparently not abnormal enough to warrant any further investigation… thanks NHS 🙃
also one quick q- would b12 at my level be causing symptoms?
I’ve been feeling a bit off for the last 2 months and couldn’t understand why (I figured all my vits and mins would still be pretty good from supps so couldn’t be that lol)
Many people have, or have had, B12 at your sort of level with no obvious symptoms - and no changes of significance if they do something to increase to 500, 1000 or whatever.
But quite a number of people find they have symptoms at much higher levels, even 500 or a bit more, which improve with B12 treatment.
It is highly individual.
I tend to assume that if B12 recirculation isn't working properly, then even what B12 you have might not get distributed as well as in others. But this is just guesswork!
Vitamins and minerals have highly variable storage/retention times. You have to look at each one. And be careful not to under-dose or over-dose any of them. Except B12 which really doesn't seem possible to over-dose.
Its difficult to know because all your results are bad tbh, your ferritin is dire and as someone who has suffered with vitamin deficiencies for most of my life I know low iron can make you feel dreadful. So too can low B12, vitamin D. Its hard to single one out as they often have overlapping symptoms.
Yeah you’re right, I would bet they’re all contributing to me feeling absolute crap! I’ve start supp’ing b12, folate, vit d and three arrows iron from today (spaced out throughout day!) just waiting on my b complex to arrive today!
I wonder if it’s worth me testing other vits and mins too seeing as these are so poor.
My diet is pretty good but my appetite has completely shrivelled up since November last year so have been struggling to get enough nutrition I guess!
I wonder if it’s worth me testing other vits and mins too seeing as these are so poor.
Your ferritin (iron stores) is too low and your vitamin D and folate are both in range but sub-optimal.
Optimise all of them and then maintain them and you'll feel a lot better.
Different people seem to have different problems with different nutrients.
In my own case I absorb B12 quite easily (as long as I take methylcobalamin and no other form of B12) but if I stop supplementing my level will slowly drop, unlike you who absorbs it but loses it quickly.
I can optimise my folate but I constantly have to supplement some methylfolate and will lose folate quite quickly if I don't. I've noticed that maintaining folate level is quite difficult for many people.
But iron and ferritin is or was the big one for me, as it is for a lot of people, particularly women. My absorption was very poor throughout life. I'd been found to be anaemic several times throughout life. And to make matters much, much worse I had a GI bleed that took several years to find and fix. When the problem was found and fixed it then took me another 7 or 8 yearsto optimise my iron and ferritin because my levels would drop as soon as I stopped supplementing. But with persistence my iron and ferritin would eventually stay close to optimal, and I now rarely have to supplement iron. I'm post menopausal which helps.
I think everyone who supplements needs to learn which of their nutrients need constant monitoring, and permanent supplementing, and which need only occasional supplementing. And when supplementing do their doses need to be just supportive or higher.
Yeah I think maybe I’m gonna check up on all these nutrients every 6 months for now, so I can work out how to maintain good levels too!
We sound similar with iron. I’ve been anemic or borderline since my teens and they only prescribe iron for a bit then send me on my way! I’m curious as to why mine is so awful and doubt mine will improve in meno! I’ve never had periods so imagine my levels would be so much worse if I did!
they only prescribe iron for a bit then send me on my way!
That happened to me. I was prescribed 2 months worth of iron when my levels were in my boots.
I discovered, thanks to a chatty and informative pharmacist, that people in the UK can buy the iron supplements that doctors prescribe without a prescription. Once I learned that snippet of info I investigated dosing, got info on iron supplements generally, bought some, and then started treating myself. I've never begged for iron supplements from a doctor ever since, and I never mention iron to doctors any more.
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