Hello, I was diagnosed with low B12 over a year ago and was started on injections. Whilst on the loading doses, my GP prescribed me a months course of folic acid to start after my first loading dose.
My question is, has anyone else had this and is it just for the loading doses or should it be longer term?
My folate was last checked in December 2023 before starting injections/folic acid and it was 4.7 (normal range 3.9-26.8) and I am on 12 weekly B12 injections although I am currently waiting to hear back from my GP surgery to try and get an appointment with my GP to ask about whether I can increase the frequency of injections - although they do help, I struggle so bad a week or two before my injection is due and although they help they’ve never got rid of my underlying, chronic fatigue.
I take a small dose of folate on injection days (literally 500mcg) but haven’t had any issues maintaining folate levels. B9 and B12 deficiencies sometimes occur together.
As for frequency, are you on 3 monthly? A lot of us need injections more frequently than this! I personally manage my injections at home, rather than waste my time and the drs.
Thank you! I’m due blood tests soon anyway so I might just ask them to add in folate and see what my levels are like.
Yes at the moment, they’ve stopped my brain fog symptoms and pins and needles in my hands, and they do help a little with my fatigue and take the edge off it but I’m still permanently exhausted, I’m waiting to hear back from my surgery with an appointment and I plan discuss this and see if I can up the frequency of my injections. It’s hard because I was very unwell on the loading doses and the GP thought it was too much too quickly so stopped me after the third loading dose and put me on to 12 weekly. I’ve had no side effects since apart from the last injection whereby my fatigue was so bad for a couple of weeks before hand, then the day after the injection I was nauseous and dizzy, which made me wonder if the side effects weren’t because it was too much too quickly, instead not enough! I’ll ask the question anyway and see what they say…
I recently joined this group, and I’ve learnt so much. I’ve been reading up a little bit on reversibility and it makes a lot of sense and definitely explains why I was so unwell (I couldn’t get out of bed and was on antisickness medications just to get fluids in to me, and it felt like I’d been hit by a truck and then drugged with sleeping tablets). It’s scary how little health care professionals know and understand about it - I asked about side effects and they told me no, I’d feel amazing and so much better, and it’s a vitamin so no side effects. When I told them how ill I was, the nurse looked at the leaflet in the box of B12, read out the side effects list and I had every one… now I know it’s more likely to be my body needing it and trying to heal…
Yes the loading doses knocked me for six - low phosphate and low potassium (which I had to point out to the Dr was a common reaction) plus new symptoms.
I think, Belle, a good course of action to show the impact on your “activities of daily living” (a health term) is to choose your most frequent symptoms and document each day. Rate them out of 10 for their impact on your day. Document when you get the injections and their impact on your symptoms.
That was a pretty crappy day for me, after a bad Dr appointment and a work incident. But this time last year, all of these symptoms were above 6 consistently. So I’ve improved a lot.
Thank you. Oh wow that’s so interesting, my bloods in October showed low phosphate, the Dr didn’t think it was any concern but that’s very interesting it’s a common reaction to the injections…
I should definitely start keeping a more formal diary to use as more evidence.
Thank you for your help and info, it’s so good to be learning a lot more about my condition, and it’s so good to hear that you’ve improved and there’s always hope.
Thank you so much… I’m learning so much from this group. That’s really good to know I can at least there are guidelines for 8 weekly injections, hopefully I can trial this and see how they go, at least then I’ll have more evidence to push for what I need.
The old received wisdom for replacement therapy was to start with B12 injections, and then add oral folate, in that order. A lack of B12, when replaced, will tend to use up folate. Starting folate first will use up any remaining B12 with the risk of worsening neurological damage.
Whether oral B12 would help is another matter, and there's been quite a bit of interest in that over the last few years. 'Way back when', when Minot & Murphy were experimenting with liver to treat PA patients [before we'd actually discovered what the 'extrinsic factor' was [B12] patients responded to oral therapy, presumably down to the sheer amount of B12 present in liver.
A friends husband who is older than her and has PA told me he had an aunt who used to have raw liver as that was the treatment back then but she still died of PA. It seems if you ate enough it kept you alive but you were still likely to die from it eventually.
It seems that although we have had b12 injections for many years since that enormous breakthrough sadly the medical profession hasn’t made much progress in the understanding of PA since those early days.
I suppose something will get you in the end! The liver treatment must have been really quite unpleasant but preferable to the alternative. It's in some ways surprising that some of the medical profession are back in the stone age as far as B12 goes.
Thank you. Looking back at my records when my folate was last checked Dec 23 it was only just in range. I plan to ask the GP to add them to the blood tests I’m due anyway on the 16th April and see what that shows up.
Hi,Yes I was advised to take folic acid by the nurse. As you can see, your test shows you were at the low end of the range. I find l-methylfolate to be better. I take Igennus Healthcare Super B-Complex supplements, omegas 3 fish oil, vitamin D, daily, and zinc and magnesium (lotion) weekly.
The science to know is that vitamin B12 and folate work very much hand in hand in the body. They are both essential for recycling proteins in the liver, along with vitamin B6. Part of why we get so ill, is the building blocks of life, down to DNA aren't being properly processed, replicated and repaired, and waste disposed of. Without enough B12, homocysteine can't be broken down, so the body binds it to fat. As we get the B12 and folate we need, we are not only suddenly able to fix what was broken, but the dustbin men can clear your fat stores, so yes, you are literally feeling rubbish!
DHA Omega 3 and zinc plus various Bs are needed to rebuild nerve myelin sheath. Eating oily fish, eggs and nuts frequently, is the other way to get them.
B12 is part of the cycle that releases ATP energy in mitochondria - basically what drives us. Dead and faulty mitochondria blocking up your cells, plus B12 being needed for immune system 'killer' T cells, which would sort that out, apoptosis, is why you are so lacking energy.
Also the body tends to repair when you are asleep, and you will have a lot of reparing to do.
The Anemia bit, lack of oxygen due to macrocytic (overly big) red blood cells, is just part of it.
Thank you so much, I’m learning a huge amount from all the lovely people on this forum. I’m definitely going to ask my GP about upping the frequency of injections now I know it’s possible, and I’ll ask to have my folate levels rechecked when I’m due my next blood test next month. Thank you!
I was rushed into hospital when I collapsed & they found I was B12 & folate deficient. I was treated by intravenous drips containing both and discharged after three days & told to have B12 im injections every three months or if more needed every 2 months. I was told to take 5mg. folic acid daily.
Come 2011 and a GP reduced my folic acid to half a 5mg.tablet every other day - this was to reduce the cost demanded by the austerity coalition Government & she was in tears when she changed my prescription yet did not explain. To do this I had to take the 5mg. tablet out of its light tight packaging and cut it in half before placing it in a clear plastic dispensing box so I could keep track of the dosing. This exposure to light reduced the effectiveness and I became folate deficient again when I could no longer grow dark green vegetable like French beans, runner beans , spinach, kale, Brussels sprouts, cabbage, broccoli etc. I bought in 5mg.folic acid tablets from Germany and this corrected the problem. I have reduced it to one 5mg. tablet every other day and take note of my nails. When my folate is low they look white and the little white "moons" at their base disappears so I go back to the daily dose. I no longer expose the tablets to light & keep them in their plastic shells & inside the cardboard box. I record a note of my daily medication.
Despite big worries in the USA about folate overdosing due to the belief by fundamentalist Christians that cereals should not be supplemented there is no reason to be concerned as no reliable scientific studies have been done - just people saying they should be done. Given the choice I would prefer to be growing my own vegetables and eating considerable qualities rather that take folic acid yet 81 years + the nerve damage & type 2 diabetes relapse prevent it.
Thank you so much for sharing your story, sorry to hear it got so extreme before you got the help and treatment you needed. So sad to hear you had your prescription halved but glad to hear you were able to source it yourself.
I totally agree with you re getting as much naturally/dietary as possible, it’s just a shame our bodies don’t agree and just isn’t enough…!
Folic Acid is comparatively cheap which is why it is the go-to for fortification, prescriptions and budget supplements. Try to get real folate if you can.
The concern is not about Folate overdosing; it is about artificial Folic Acid overdosing. That is because it takes longer for the body to process Folic Acid into a usable form it, so it can build up and cause problems. These concerns have nothing to do with being a fundamentalist Christian - everybody who wants to retain control over what goes in their body is likely to be concerned.
Fortunately I saved one of my previous responses to Bellabab. I'm certain that since I had this same disagreement with her on the claimed assured safety of folic acid maybe a dozen times over the last years, that there is no possibility of changing their mind, but I think its worth letting everyone else see some of the evidence for themselves again so they can make up their own mind where the balance of evidence may lie.
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As I've said many times, It is not clear that 5mg of folic acid (a dosage 25x the RDA) is necessary outside of correcting deficiency.
Since you have said previously that you do not eat a lot of folate-rich food it is not surprising that it would be necessary for you to supplement.
We can start with this paper:
Perspective: The High-Folate–Low-Vitamin B-12 Interaction Is a Novel Cause of Vitamin B-12 Depletion with a Specific Etiology—A Hypothesis
"We hypothesize that excessive intake of folic acid depletes serum holotranscobalamin (holoTC), thereby decreasing active vitamin B-12 in the circulation and limiting its availability for tissues."
"this hypothesis explains the findings from 2 large cross-sectional studies, NHANES and SALSA (40, 41), that show the classic association of vitamin B-12 biomarkers (tHcy and MMA) with vitamin B-12 status is paradoxical when a vitamin B-12 insufficiency state is accompanied by high folate (Figures 4 and 5).
Further support for the hypothesis comes from the study described above in which folic acid supplements were mistakenly prescribed to vitamin B-12–deficient patients"
The full hypothesis is as follows:
"It is hypothesized that exposure to excess folic acid (via supplements and fortified foods) causes exacerbation of vitamin B-12 deficiency by binding to folic acid receptors (FR; red triangles) in the bone marrow and the renal proximal tubule cells. This leads to diversion of the limited supply of serum TC-B12 (depicted by thick black arrows) to the bone marrow to support folic acid–mediated hematopoiesis and reticulocyte formation, or into the urine by possibly interfering with TC-B12 uptake via the megalin/cubilin/amnionless receptor complex in the renal proximal tubule cells or by some other mechanism yet to be elucidated. The TC-B12 is diverted away from other tissues (e.g., liver and brain; depicted by thin dashed arrows). This leads to accentuated elevations in Hcy and MMA concentrations in serum (also depicted by thick black arrows) and exacerbation of neurodegeneration"
From the abstract:
"This hypothesis is drawn from evidence of observational and intervention studies of vitamin B-12–deficient patients and epidemiological cohorts. The evidence also suggests that, in a depleted state, vitamin B-12 is diverted to the hematopoietic system or the kidney."
"In summary, our findings corroborate what others have uncovered in various models. Deficient and excessive levels of FA similarly impact global DNA methylation, cytome biomarkers, and DNA repair gene expression. While the specific mechanism underlying the observed effects requires additional research, the accumulation of evidence from recent reports warrants a fresh perspective on the role of folic acid fortification in health and disease."
and this one:
Folic acid depletion as well as oversupplementation helps in the progression of hepatocarcinogenesis in HepG2 cells
"Folate ingestion below and above the physiologic dose has been shown to play a tumorigenic role in certain cancers. Also, excessive folate supplementation after establishment of pre-established lesions led to an advancement in the growth of a few tumors."
and this mouse-model study:
Excess folic acid intake increases DNA de novo point mutations
"Our data indicate that FA supplementation should be restricted to an ideal benefit range. Both insufficient folate and excess FA intake are risk factors for genome and epigenome instability. The genome and epigenome impairment induced by either high FA or low FA diets should be further confirmed in human population in future studies."
this workshop outcome:
Knowledge gaps in understanding the metabolic and clinical effects of excess folates/folic acid: a summary, and perspectives, from an NIH workshop (2020)
"At present, there is an insufficient body of evidence to support human adverse health outcomes that are a result of high amounts of folate or folic acid intake. However, owing to a provocative body of observations and the potential public health ramifications of these observations, a comprehensive and rigorous body of future investigations is warranted to determine if there is a causal relation. "
"The literature presents compelling evidence that excess folate disrupts one-carbon metabolism, significantly impacting methylation reactions. It remains unclear whether the resulting epigenetic changes are caused solely by the direct disruption of one-carbon metabolism by excess FA or if other unidentified pathways are involved."
The 2023 EFSA scientific opinion on the tolerable upper intake level for folate called for further research in many areas relating to excess folate:
• "Further research is required regarding all groups of the population to characterise potential critical effects of excess folate intake. This should address potential differences in the toxicity profile of the various forms of folate added to foods and used in food supplements. Also, investigations of the potential vulnerability of specific subgroups of the population, such as infants and children, pregnant women and older adults, is needed, taking into account specific issues in terms of absorption, metabolism, distribution and excretion of various folate forms in these groups.
• Further investigation of the relationship between high folate intake and the risk of cancer is needed, including colorectal and prostate cancer. Additional research is needed on the relationship between high folate intake and the risk of SSA/Ps.
• Further research is required to clarify the impact of high doses of folic acid and 5‐MTHF on brain structures and functions.
• Research is needed to investigate whether the epigenetic changes found in interventions with high doses of folic acid in some populations are causally related to alterations in any phenotypic characteristics. Research is also needed in that respect on the other forms of folate.
• Additional research on UFA is required, in particular whether UFA can specifically affect biological pathways leading to adverse health effects.
• Data on the consumption of fortified foods and food supplements containing folic acid and/or 5‐MTHF salts in EU populations are scarce. For the risk characterisation, there is a need to generate more and harmonised data on folate intake in its different forms from food supplements and fortified foods among users of those products."
There is not enough evidence to say with certainty that intakes of 5mg of folic acid are safe long-term, and there is almost nothing that would suggest that they are necessary outside of quickly correcting a severe folate deficiency.
Conversely, there is emerging evidence and physiological plausability that points to very high folic acid intakes possibly having a negative effect on B12 availability and function and potentially other negative health effects too.
Although this is somewhat of an appeal to history, it can also be noted that prior to the formulation of folic acid in 1946, the normal intake of dietary folic acid would have been 0mcg. This doesn't automatically imply that it is a bad thing to consume per se, but its certainly a new substance to our bodies and in my mind, supplementing it is much more comparable to taking a medication than to supplementing a common food ingredient or food component. The application of the precautionary principle to such a substance, is I think, quite warranted.
Conversely, there is good evidence that 400mcg or less of folic acid is a safe dosage, for those that need it. Certain groups may benefit from up to 800mcg in forms such as methylfolate or folinic acid, which are safe and more closely comparable to the folates provided in food sources.
In summary, I think the current body of evidence warrants being somewhat cautious about very high levels of folic acid supplementation, especially those which are far in excess of the tolerable upper limit (1mg).
Hi Technoid, thank you for replying - I'm glad to know I am not alone.
The issues keep getting obfuscated by people confusing terms. Even the scientists you have quoted, use Folate and Folic Acid interchangeably; they are not the same. Folic Acid does not exist in nature so we do not have Folic Acid receptors; we have Folate receptors. Having them occupied by an artificial substance limits absorption of real Folate while the body goes through a much more lengthy process of converting the folic acid into a usable form, while a possible build-up of unprocessed Folic Acid has its own problems especially for those with Methylation disorders - which is a significant percentage of the population.
The relationship between Folate and B12 levels is obviously important, but that is another discussion.
I have just noticed your 2nd Comment. Thank you for all the info. As I said, the failure of clear distinction between FA and Folate, does my head in. Are they finding excess FA is dangerous, or excess Folate, or both??? - Folic Acid depletion does not even exist.......
My experience is that it seems to be difficult for people to get injections as often as they need them. If you are getting symptoms back, it means that your body is undergoing damage. Some is reversible, some is not. A lot of people self-inject to get enough B12. There is info on the forum about that.
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