I was diagnosed B12 deficient in 2016 and have been receiving 3 monthly injections since then but feel around week 8 that symptoms return. I have been experiencing tiredness, brain fog, not able to get my words out, stomach issues but it's my hair that is most distressing as it is falling out and I now have much less hair. I went to my gp and she ran some tests and my iron she said was good but my folate low so has given me folic acid 5mg to be retested in 2 months but she also advised that I should keep taking it as looking at my records I have been low before and therefore she has put them on repeat prescription. I thought taking folic acid at that level indefinitely is dangerous?
I also asked if my injections could be increased to week 8 but she said she only deals with one thing at a time (folate level) and that my readings for B12 were excellent (I didn't have the evidence to state that this result is irrelevant if PA). I stated that I had been tested before for PA but it was negative but from reading up this test can be negative in 50% of the cases but the patient could still have it. She said she would retest for PA (not sure she understood what I was trying to say!) so i am back at the mercy of a gp who won't increase injections and won't get me a diagnosis unless the test is positive. I also consulted a hair specialist who said from these results my ferritin was on the low side and needed to be 70 to grow hair however my iron is good and therefore she advised me NOT to take iron supplements so I have no idea how I can improve this? My doctor refused to test for vitamin D so thinking that maybe I should get that tested privately to see where I am in the range, do you think this would be worthwhile? My diet is really good so I know it is not that but if feels like all of these deficiencies are linked and I feel like there is something going on in my gut that means I am not absorbing vitamins well but not sure how best to tackle it (would increasing injections help?) I have been reading a lot of the posts here which have been really helpful but I think I am getting confused with all the information that to be honest was never given to me when I was told I was B12 deficient 4 years ago. The results of my bloods are below and I would be really grateful for your comments and advice:
Iron Profile
Will be filed as: 42d2.00 Plasma iron level
Iron profile Ref Int refers to a fasting state and not on Fe supplements
"serum ferritin" 58 ug/L (13-150)
"serum iron level" 19.7 umol/L (10-30)
"Percentage iron saturation" 31.0% (30-40)
Vitamin B12 and Folate
Will be filled as: 44LE.00 Plasma vitamin B12 level
1. My brain fog and anomia (inability to remember names of people/things) are neurological symptoms of a B12 deficiency.
2. The British National Formulary recommend injections every 8 weeks for those with neurological symptoms. Therefore I want to have my injections every 8 weeks.
3. I am unhappy with taking such large doses of folic acid. I would like to stop the 5 mg tablets and start taking 400 mcg of folic acid (from the supermarket) a day, with a test in two months to ensure that this, safer, plan has restored my folate levels.
Thanks Fbirder, I do think a letter may be easier as the telephone consults make it more difficult I find. I have the guideline links so will include those in the letter but I hate that I have to go down this road but it seems most people on the site have had to walk the same path! In your experience then is folate often low with people with PA?
A letter is much better in many ways. It is easier to arrange thoughts. You can't get interrupted. And there is a permanent record of what you've said.
It is annoying that it's sometimes needed.
Folate can be low in people with PA. That's because folate in food comes attached to molecules of glutamate, which need to be removed before the folate can be absorbed. This removal is done by enzymes from the pancreas that need acid to be activated. And people with PA are short on stomach acid.
But folic acid doesn't have these glutamate molecules attached, so doesn't need acid to be absorbed. Thus, people with PA can normally get enough folate with folic acid tablets.
Thank you for explaining Fbirder that makes sense. Would the low stomach acid cause other issues for us PA sufferers and if so is there anything that can help? I suppose I am just feeling my way around to see what steps I can personally take to feel better as well as badger the GP for further injections. If it means me also self injecting ,whilst I shudder at the thought of it, I would be prepared to do it.
Yes, low stomach acid can also hinder absorption of iron and vitamin D. A low dose vitamin D supplement is a good idea, especially during autumn and winter. Don't take iron supplements unless advised to by a doctor.
Low stomach acid can also cause problems with bacterial overgrowth, resulting in symptoms similar to IBS (bloating, wind, diarrhoea, constipation) some people find a small amount of an acidic drink (apple cider vinegar or lime juice) helps. I take about 30 mL of lime in a glass of something (water, fizzy orange, tomic, gin) and it seems to help.
Low stomach acid can also cause the formation of Neuroendocrine Tumours. It's a good idea to ask for a test for the amount of gastrin in your blood. Gastrin is a hormone that controls (and is controlled by) levels of acid in the stomach. Low stomach acid can lead to high levels of gastrin. And high levels of gastrin is what causes those tumours.
If you do have high levels of gastrin in the blood then having a gastroscopy every few years is a good idea - to look for NETs. If they do find any they're not a big worry. They tend to sit there doing nothing. I've had mine for about 5 years and I have a gastroscopy every year, just to make sure they're sitting there doing nothing.
Thanks so much for your reply. It's unbelievable the other effects that those with a B12 deficiency experience and it does sound like I may have low stomach acid so another piece in the puzzle. I will definitely try the ACV or lime juice as you suggest. My doctor didn't mention my Ferritin level being 58 which I believe should be ideally at least 70 and therefore she has not prescribed iron just the folic acid so I will see how I feel after taking that for 2 months. I have requested a private test for the vitamin D to see how much I need to supplement - I'm in Northern Ireland, no sun, working from home, no holiday so I know I am very deficient!
I read fbirder's advice on another post about taking ACV, lime or lemon juice and I tried this a few weeks ago as I have daily heartburn which is very uncomfortable. Or I should say - did have daily heartburn! Not any more......
I use organic pressed lemon juice (as I'm sensitive to sulphites) and take some in water just before a meal and also whilst eating. The results have been fantastic for me and I feel so much better no more pain!
Well worth trying.
Really glad I found this forum; thanks fbirder....
That's what I said - "The British National Formulary recommend injections every 8 weeks for those with neurological symptoms. "
The part about loading injections is irrelevant for MCkit because they have been receiving injections for four years and have very high levels of B12. The loading period is designed to get levels very high as quick as possible. They are already high and have been for years.
Putting stuff about loading doses into a letter to a GP would just obfuscate the issue when the aim is to provide clear action points that the doc cannot argue with.
Thank you sleepy bunny. This is really helpful and I will have a good read over it all, it’s overwhelming isn’t it but I really appreciate the help this forum provides. If I don’t get anywhere with this gp you are right I will just try another, they may be more understanding.
You're right that it can be overwhelming but worth the effort if it leads to a diagnosis and/or adequate treatment.
I suffered for many years and every request for NHS B12 treatment was turned down.
In the end I was forced to self inject when I realised that I was headed for dementia and spinal cord damage if I didn't get treatment...I already had dementia type symptoms and pins and needles in my spine.
I wistfully think of all the lost years (over 15 years) when I was too ill to be a proper mother, wife, incapable of working and wish I'd had access to all the information I have now.
I’m so very sorry to hear that Sleepybunny but pleased you are able to access the injections yourself though you shouldn’t have to! I just don’t understand the unwillingness of the doctors. Here in the UK we don’t ask for second opinion enough , I know I have previously taken what my go has said as being correct as they are the doctor but not anymore.
"Here in the UK we don’t ask for second opinion enough"
I did ask for second opinions and think I was labelled as an awkward patient because I did although I always tried to be polite.
I was told by one GP that I cost far too much money...she wanted me to accept that I would never find out what was wrong with me.
I used to put requests for referrals into a polite letter to GP backed up with evidence that supported my request eg symptoms list, extracts from medical articles/guidelines etc.
My GP surgery at the time got fed up with me and sent me a letter suggesting I go elsewhere.
I did eventually get some NHS treatment but I seem to need far more than NHS is willing to give.
Sometimes it is necessary to be assertive but this can have an effect on GP/patient relationship.
I used to be full of respect for the medical profession but sadly my experiences have made me cynical.
First of all I just want to say that you are not alone. GP’s don’t know it all and are not god, regardless as to what my elderly relatives believe 🤣
I’m no doctor and have only been researching this stuff for the past 15 years and with brain fog and ill health I struggle to retain and connect the dots sometimes. For this reason I have found a functional medicine gp in the North of England. She has done all the blood/urine/hair tests that my gp won’t do. Turns out I have severe calcium deficiency and you need vit d to absorb calcium! 🤷🏼♀️ Who knew... clearly not my gp as my vit d has been out of range or just in for years.
What I was wanting to respond to was the folic acid you are taking. I was given this when I tried to become pregnant and long story short I have the MTHFR gene, amongst others, that means folic acid blocks my methylation system and so I need to take more pure forms of folate via supplements. Sadly your gp will dismiss any of that info. I was taking active folate from Seeking Health which you can buy from Amrita in the UK. I would do a bit of research on methylation, folate (and the effects of folic acid). Depending on your diet you may already get a lot of folic acid as it’s put in food. I’m currently on a low histamine and an autoimmune paleo diet/elimination diet. She has put me on self injecting b12 shots plus quercetin, magnesium, vit c, methylmulti vitamins, probiotics, taurine, fish oils etc. My sleep has improved, I dont wake and lie in bed struggling to get up and feeling down anymore and my gut is healing, no more swelling, bloating, extra gas etc. Brain fog is easing and I feel so much more content and it’s only been 6 weeks since I spoke with her. Sadly it’s taken till I became so ill to find her and to be able to afford to pay for supplements and private help.
Is there any chance you can change doctors at all? We have a few in our local surgery and it’s like roulette as to who you will see unless you specify and can wait for an appointment. I totally understand your frustrations at not being heard, we are the experts on our own body, mind and health. We go to them for the advice and knowledge that we don’t have.
In relation to thyroid there are more tests than your gp will do. They just test for the antibodies to see if they are present. What they don’t test for is whether you are converting that into actual energy. You could have loads in your system but if you don’t convert it then it’s pointless. Some folk have low amounts but convert it well and some have lots but can’t convert or convert small amounts. It’s the most pointless test in my opinion. I have just had to get my levels done privately and awaiting for results. Good luck 😉
Thank you so much for sharing comtentedmum. I have actually just requested the genetic testing from 23andme so it will be interesting to see if I have this MTHFR gene which I keep hearing about. I was considering a functional doctor but it is difficult to find in Northern Ireland with very limited options but it might be worth a chance. My diet is good though I have just removed gluten in the past two weeks as I have read so much about its effects on people (I have been tested for coeliac a few times over the years but negative). The fact that my thyroid and coeliac has been tested over the years tells me there is something going on that we haven't got to the bottom of! It has only been two weeks but I do feel better, much less stomach issues and I am also avoiding dairy except butter as it effects my skin badly. I will definitely look in to the active folate you suggested and I have been advised to get my vitamin D checked so have ordered the private test and then take it from there. You really do need to be your own cheerleader for your health , doctors just want to treat symptoms and not get to the bottom of it but I am really determined to try to! Thanks so much for your replying I really appreciate it
Based on the existing data, scientists at 23andMe have concluded that people should not interpret their genotypes at the common MTHFR variants as having an effect on their health.
In order for a connection between a genetic variant and a health condition to be considered real and clinically meaningful, well-run scientific studies need to show convincing and consistent evidence for that association. As statements from multiple scientific and medical organizations indicate,[14] [15] that is currently not the case for the common MTHFR variants.
Have you thought about reducing FODMAPs from your diet.
People who think they have non-coeliac gluten sensitivity do not. Experiments on people who claim to be gluten sensitive show that they have no response to an energy bar containing gluten, but they do react to one containing fructans (a type of FODMAP). newscientist.com/article/21...
Cutting out wheat from your diet will also lower the amount of FODMAPs.
Thanks Fbirder, I was reading about FODMAPS as well but to be honest cutting out gluten seemed to be easier and much less restrictive. That being said there could be a good argument for doing a short term FODMAP diet and seeing how that goes before reintroducing foods. I think what was really off putting for me was the cutting out of a lot of vegetables and fruit and other healthy items at a time when I have deficiencies though really that is me being lazy as they do offer alternatives so definitely food for thought.
Ah! But cutting out FODMAPs rather than gluten means you can still eat real bread. It took me some experimenting, but I found I could happily eat sourdough bread (packed with gluten, but the FODMAPs have all been fermented away) and some white bread I can eat a few slices.
Apart from fructose my FODMAP intolerances means I don't have to avoid foods, I just need to restrict the amount. So a few mushrooms in a pizza (sourdough) are fine but mushroom soup isn't.
I'm currently experimenting on how much onion I can safely eat (somewhere between 1/4 and 1/2 of a smallish onion).
I LOVE sourdough, I am Irish which means we eat a LOT of bread, soda bread, potato bread, wheaten bread and I love them all so that would definitely swing me towards trying fodmaps. How long must you avoid the foods, would 4 weeks be too short? Onion and garlic would also be difficult but good to know that you can experiment with the amounts...
I've found that finely chopped white cabbage can replace onion in curries etc. And using garlic-infused oil solves that problem.
I have a fairly quick response to any foods that I cannot handle. If I have too much fructose or fructans then I get woken up around 04:00 for a mad dash to the loo.
I kept a food diary for a few months and tried to find a selection of meals that I was OK with. We had a boring diet for quite a while as I would only prepare 'safe' meals and introduce experimental dishes every now and then. Now I'm fine eating at home. Once covid-19 is gone I will be back to my problems eating out, either picking something safe (ham, egg and chips in the pub is always a safe choice). But I've had to give up eating Indian food unless it's prepared at home.
Great tips thank you and yes I can imagine eating out being very difficult. I will definitely need to do a food diary and be strict for a while, I’m quite a boring eater anyway to be fair and don’t eat takeaways or anything though I think I will be preparing my own food as can’t imagine my partner agreeing to such a plain diet but needs must!
Everybody 'has the MTHFR' gene. If you didn't you would not be alive.
Almost everybody has at least one mutation of the MTHFR gene.
Only one mutation might have any adverse effects (homozygous for C677T).
No MTHFR mutation can cause folic acid to 'block your methylation system'whatever that is supposed to mean.
Some people who are homozygous for C677T may find that methylfolate works better for them than folic acid.
Methylfolate is no more 'pure' and no more 'natural' than folic acid. Indeed, it is made from folic acid.
Here is what 23andMe, one of the biggest genetic testing companies in the world say about MTHFR - blog.23andme.com/health-tra...
Based on the existing data, scientists at 23andMe have concluded that people should not interpret their genotypes at the common MTHFR variants as having an effect on their health.
In order for a connection between a genetic variant and a health condition to be considered real and clinically meaningful, well-run scientific studies need to show convincing and consistent evidence for that association. As statements from multiple scientific and medical organizations indicate, that is currently not the case for the common MTHFR variants.
This is really interesting thank you for sharing I will definitely watch this in full later. I have seen this gene being discussed for quite some time but really interested to see the scientists view. It will be interesting to see if I am homozygous for C677T.
Just be sure to ignore anything from 'Dr' Ben Lynch - famous med school dropout who got his doctorate from a college with a very poor reputation. Is now trying to make a fortune by spreading fear, uncertainty and doubt by lying about methylation.
Try and find any scientific papers he has written. I'll help, here's a list...
lol thanks FBirder. It's hard navigating around everything seeking answers to your health questions, it takes time and patience which can be frustrating but necessary.
You’re absolutely welcome. I’m on a bit of a mission to share what I can when I can. I had the 24&me done just over 3 years ago, you do need to run the raw data through another app, I don’t know if you are aware of that? It may be worth investing in Ben Lynch’s book too, Dirty Genes, as it explains so much and things you can do regardless of having a dna test.
My functional doctor is about an hours drive away from me but she actually did my appointment via zoom so if you want details let me know. I have been told that I don’t have thyroid issues yet my fmgp is convinced I have functional thyroid issues relating to methylation cycle so once that is ‘fixed’ I should be ok again.
Yes we totally have to sort ourselves out don’t we. I have such a negative view about this kind of practice. I love the NHS but I believe we should all be getting private help so we can demand more but I guess even then some practitioners are not very good anyway.
Diet wise I literally quit all kinds of dairy, eggs, caffeine (including dark choc 😥), gluten, wheat, grains, seeds, nightshades vegetables and many fruits including citrus. I feel so much better. Still a long way to go but my brain function flickers on more and I have spurts of energy, I can get out of bed in a morning and my mental health has massively improved.
Please share when you get your results. I’d be fascinated to see if you have MTHFR and COMT. 🤔😉
Wow thats a lot of info. Sorry to bother anyone, I had a post and cant find it and I think I sent a copy of blood results. Can anyone help me locate them? Thank you
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B12 results-please can someone advise? 
Blood results
Help with blood test results
