Symptoms returning ?: I need advice as... - Pernicious Anaemi...

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Symptoms returning ?

Charlie27612 profile image
ā€¢45 Replies

I need advice as to what is going on with me šŸ™„I was diagnosed privately with pernicious anaemia in nov 2022, I also have hashimotos and my vit d was very low.

I had many neuro symptoms to begin with pins and needles in my legs,numb foot crawling skin sensations and balance issues, double vision,extreme tiredness I felt very ill but gp kept saying my b12 wasnt 'very low' it was 198 and we have PA in the family šŸ™„

I've been si eod and was advised to take 5mgs folic acid on day of injection .I have had regular blood tests through medichecks to check iron ,folate and vit d. My iron dropped last summer and I had an iron infusion in july,

I felt a bit rough for a couple of weeks afterwards but not as bad as I did before it !

I have tried on two occasions to reduce b12 to every 3 days but after 2/3 weeks I feel the extreme tiredness returning, balance is off and eyesight so back to eod.

My last blood test in nov showed folate 45nmol so was advised to reduce to 5mgs once a week while continuing eod b12, Dizziness and tiredness returned after 2 weeks so I bought sublingual folic acid and have been taking 2,400 mcgs on day of injection for 1 week. Keeping an eye on potassium through diet.

For the past 3 days I have had facial tingling again and muscle / nerve jerks in one leg, very strange, I have had shingles before and the face tingling feels like that, but no rash ?

I ordered a new batch of b12 as the last lot I ordered was delivered and left on my doorstep last summer in the heat so thought maybe it had been ruined, I started the new batch 6 days ago.

So after my very long post my question is,

Could these symptoms be reversing out symptoms teturning due to last lot of b12 being ineffectual?

Could my folate have dropped in that time so b12 wasnt working ?

I know this journey is life long, and very up and down, I had no support from my old gp although they did acknowledge the PA diagnosis and it is on my records, I have recently changed surgeries but am loathe to start another battle about 'nice guidlines' etc, I really havent got it in me anymore and want to see light at the end of the long dark tunnel I'm in at the moment,

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Kat_88 profile image
Kat_88

Hi Charlie, Iā€™m so sorry youā€™ve been going through so much! I understand the pain.

First of all, Iā€™m really surprised by the very high dosage of folic acid, especially when your active B12 levels might still be very low (198 itself was already very low on paper!) In my personal experience, taking a high dose of folic acid while having low B12 made things worseā€”all my neurological symptoms appeared, even though I had been B12 deficient for a long time without any neurological issues. This happened when I started taking 5 mg of folic acid for seven days a month.

After doing my own research, I decided to stop the folic acid and started self-injecting B12, and I improved significantly. Later, when I tried the same folic acid dosage again (prescribed by the same doctor) but at a lower B12 injection frequency, the symptoms all came back, so I stopped it again.After more than a year of avoiding high-dose folic acid, I recently had an appointment at the B12 Institute in Rotterdam, where they did blood tests and advised me to take 400 mcg of folic acid daily because I have thalassemia minor and am of fertile age. I hope this lower dose wonā€™t cause any complications!

This is just my personal experienceā€”it may not relate to you, but I thought it was something to consider! I hope others can share their opinions as well!

Charlie27612 profile image
Charlie27612ā€¢ in reply toKat_88

Thankyou for your reply, at the start of this I was being treated by the nhs for very low folate for 8 months, which made my b12 drop even lower, increased my symptoms but b12 was still 'within range' according to gp, at this point, one of the dr's at the practice was willing to start injections, taking into consideration family history of PA plus the fact I was almost bed ridden.He was unfortunately over ruled by the lead gp who wasted more time referring me to be checked for sleep apneoa....it was then I resorted to a private consultation, I had extensive blood tests at this time and it seems that due to also having problems with my bowel as well I cant seem to absorb many vitamins through diet or supplements, my levels drop quite quickly. I have had blood tests every 4 months to keep a check and it was only after the iron infusion that my folate rose, thats why I was advised to now reduce the dose. To check again in 6 months. From what I have learned I thought folate and b12 work together in some way, but its a fine balance. I think I have read every research paper and looked for information everywhere but just get more confused šŸ™„ I wish I could sit in front of a dr and spill all this out, but so many dr's havent a clue, they just go by lab results which vary all over the country, some set very low ranges, meanwhile you just feel worse and worse.I'm just fed up of trying to work things out for myself and getting no where šŸ™„

Charlie27612 profile image
Charlie27612ā€¢ in reply toCharlie27612

How did you get seen in Rotterdam by the way? I would drag myself there if it would help šŸ˜Š

Nackapan profile image
Nackapanā€¢ in reply toCharlie27612

I also had severe neurological symptoms abd was initially bedbound .Serum B12 106 pg/ML ( 200-900)

Folate 3 vitD previously 21 ( 75+

Ferritin dropped to 29

J had EOD b12 injections for 6 months .

400mcg folic acid daily

Loafing doses of vit D previously and tgen 2000iu daily with k2mark7

My folate rose to above range in 3 months so halfed my folic acid.

Remained tok of range.

Methylcobalabin can in some give extra symptoms.

I was on iron and still need s low maintenance disd but have never needed an infusion.

High doses on one thing knocks other things oot of balance.

Less is more at times apart from B12 .

It actuslly took s few years to find out how to manage alot of symptoms .

Now going by 6 monthly bloods I supplement accordingly.

For me 200-400mcg every othef day of folic acid .

Vit D daily

Iron varies

I've stopped ferrous fumarate now 210

It's important yo stick with the same lab to compare bloid results to monitor

I was also seen by 2 NHS neurologists and 2 private .

A private physiotherapist specialising I vestibular disorders .

Another NHS course 2 yesrs later .

ENT

3 levels s of optometry

Tested on a colour metre privately for a tint to help pattern glare and light sensitivity.

1 brain CT

1 brain Mri

1 brain snd upper cervical

All NHS

Have you been seen by s neurologist ?

In my experience its taken years to 'stabilise '

It's definitely a roller coater

Now for my G.p surgery to challenge my 2 weekly prescription yet agsin !!

I also buy my own

Try snd kero a diary.

If you reduce say folic acid keto notes

Only change one thing at a time

Charlie27612 profile image
Charlie27612ā€¢ in reply toNackapan

Thankyou for your reply, I do keep a diary...just as well as my memory is shot at times ! I cannot seem to retain information have to keep re reading things šŸ™„I always use medichecks so I presume they use the same labs?

These symptoms returning came after I reduced the folic acid, so I presumed it was that not enabling the b12 to work, then I looked into 'high' folate but some say there is no upper limit while on eod b12 injections , which confused me more, I do know that taking high doses of folic acid while not treating b12 can cause deterioration and worsen symptoms, that then caused me to wonder if the b12 ampoules had been damaged by the heat last year, the delivery went wrong, they tried to deliver on wrong day so they came back the next day but left them on doorstep in the hot sun! I keep my b12 in an insulated bag in a drawer as I know heat and light can damage.

All this coincided with my low iron so put the way I was feeling down to that but maybe its been the b12 all along, Thats why I ordered a new batch, but this is when these symptoms of tingling arose again so I wondered if the new b12 is causing reversing out again, like at the beginning?

I have been iron anaemic before a few times but cannot tolerate any iron tablets, having the infusion was worth every penny (credit card) I understand it would have taken 18 months to get that amount by the oral route, even liquid iron makes me sickšŸ™„ the tingling is better today , so I will continue eod with new batch of b12 and try reducing folic acid even more, then do a blood test in a month or so. No doubt I'll be back here soon šŸ¤£

Nackapan profile image
Nackapanā€¢ in reply toCharlie27612

I really hope it was spoilt B12 the problem

Charlie27612 profile image
Charlie27612ā€¢ in reply toNackapan

Me too, I used the new batch today and the tingling is less annoying, time will tell

wedgewood profile image
wedgewoodā€¢ in reply toCharlie27612

Dear Charlie27612,

Iā€™m going to put in my penneth of advice now . Life is so difficult for you now Iā€™m really sorry for that . . You state that you have difficulty in absorbing vitamins and minerals . My advice to you on that is ā€” look after your gut Microbiome as itā€™s called today . It will be good for you to encourage the good probiotic bacteria in your gut by taking a good fermented product that contains those good bacteria .

As a Pernicious Anaemia / autoimmune Gastritis patient , it means that one has low /no stomach acid ( Hypochlorhydria/ Achlorhydria) This allows bad bacteria to thrive and multiply in your stomach . These bad bacteriaā€™s do inhibit the absorption of Vitamins and minerals . I , for example like to take an acidic drink with meals . Severe cases treat the problem with Betaine Hydrochloric acid with pepsin capsules , taken with protein meals. ( Amazon)

Another beneficial thing to do is to take a fermented food stuff everyday . Personally I take home-made traditional Kefir every morning . ( shop kefir is also good, but not as potent as traditional .) The only traditional Kefir to buy is The Chuckling Goat kefir. Made in Wales . They have Nutritional Therapists who will advise you ,( you can chat to them FOR FREE) and you can get a Microbiome test from them .

Real yoghurt , sauerkraut and kimchi are also good . If that all sounds awful to you , you can try probiotic capsules . The good bacteria will suppress the bad bacteria. There will always be the bad ones lurking , waiting to take over ( they sound like criminals, donā€™t they ? Well , they are actually! ) These natural products will do you no harm , even if they are not the answer to your problems . - Thatā€™s important .

Youā€™ve now been inundated with advice . I hope that you will carry on investigating , and find out whatā€™s going on . .

I wish you the very best .šŸ‘

Charlie27612 profile image
Charlie27612ā€¢ in reply towedgewood

Thankyou, I was diagnosed with diverticular disease too which has affected my terminal ileum area of the bowel, which is the area that b12 is converted and transported, also vit d I believe, so double wammy.There are a lot of things I cant eat when I have a flare up, even without a flare up as I dont want to end up in hospital again, some things aggravate my bowel.I think I def have low stomach acid, inspite of acid reflux, obviously I was given omeprozole when I didnt know any better the damage it can do šŸ™„ I did try probiotic yoghurts,betaine cider vinegar, lemon juice you name it šŸ˜ I will look into the other things you suggested, thankyou

Charlie27612 profile image
Charlie27612ā€¢ in reply toCharlie27612

I dont take omeprozole anymore by the way, just gaviscon before bed as I also have a small hietus hernia......I'm soooo lucky šŸ˜Š

wedgewood profile image
wedgewoodā€¢ in reply toCharlie27612

Gaviscon contains an antacid . Yes I have an hiatus hernia also , but it doesnā€™t bother me luckily . ( yet!)

Charlie27612 profile image
Charlie27612ā€¢ in reply towedgewood

I've started eating earlier in the day so my stomach isnt full in the evening, sometimes I get away with it, but even though I sleep with 3 pillows, it wakes me, so then I take gaviscon, I hope this all resolves soon, thanks so much for your helpšŸ’œ

wedgewood profile image
wedgewoodā€¢ in reply toCharlie27612

I find traditional kefir best , but Chuckling Goat is expensive . So I make my own . Anyhow we are all different . Yes Omeprazole was the worst thing for you . Acid reflux is mostly caused by LOW stomach Acid ! The Oesophageal sphincter does not close tightly enough if the stomach acid is not full strength . So weak stomach acid gets through . Full strength stomach acid is almost Ph 1 and strong enough to burn a hole in wood !

Charlie27612 profile image
Charlie27612ā€¢ in reply towedgewood

I honestly think its all related to being undiagnosed with PA for years and years, I put so many symptoms down to my thyroid so did my gp, I only started getting severe reflux when I got very ill just over 3 years ago, looking back I def had lots of things that have improved (apart from this recent hiccup )were caused by b12 deficiency. I'm not a big milky drink fan, does kefir taste more like yoghurt?

wedgewood profile image
wedgewoodā€¢ in reply toCharlie27612

Kefir is more acidic than yoghurt ( well mine is!). If you are not keen on milky drinks , you can buy , or make Water Kefir ( you need Water Kefir ā€œ grainsā€ if you make your own . ). Kombucha is also a water -based fermented drink . They have different nutritional benefits . All recipes and instructions can be found on the internet .

annmarierodnes profile image
annmarierodnesā€¢ in reply toCharlie27612

I make my kefir with soya milk. On every 4th batch I feed the grains with full fat milk as advised.

Charlie27612 profile image
Charlie27612ā€¢ in reply toannmarierodnes

I've ordered the grains to make the water kefir, also some kefir yoghurt to try, as I'm not a milky drink fan I thought I'd try this, I've got some ready made kombucha, so fingers crossed šŸ’œ

Showgem profile image
Showgemā€¢ in reply towedgewood

Sorry to butt in on someone elseā€™s post but I would like your opinion on if we should take omeprazole when taking a cocktail of strong painkillers?

I relented after being told that I needed to take them to protect my stomach by 3 different health professionals.

I have PA and Iā€™m certain that I have low stomach acid as I struggle to maintain levels of vitamins without supplementing. Iā€™ve been on this cocktail of painkillers for 4 months now following spinal problems which are ongoing.

wedgewood profile image
wedgewoodā€¢ in reply toShowgem

Taking Omeprazole , or any other PPI will totally annihilate any stomach acid that you have . It shocks me to hear of medical professionals prescribing it to Pernicious Anaemia patients . They know next to nothing about P.A. and it shows . It was a Gastroenterologist who told me about P.A. patients having lie or no stomach acid. Iwas so amazed thst I asked him no questions. PPIs are the biggest money spinners for the Pharmaceutical Industry . They should only ever be prescribed for a short time . Achlorhydria/ Hypochlorhydria should never be treated with a PPI But itā€™s an easy and lazy way out of further investigation and detective work . And Big pharma love it .

My doctor wanted me to take ant -acids , but wouldnā€™t , and found my own way around the problem of reflux .

Charlie27612 profile image
Charlie27612ā€¢ in reply towedgewood

I honestly feel they contributed to pushing me over the edge with b12 def, people take them for years,like you say if they can prescribe antacids ,painkillers and antideppressants by the ton,why cant they treat us properly with a vitamin that costs pence or let us treat ourselves without making us feel like we are doing something wrong.as some gp's do.The lady that asked just now, I wonder are you relying solely on nhs for b12 treatment? I would ask to be referred to someone that can look at why you have spinal problems, Painkillers will only mask the pain and ppi's will ruin your stomach.

I hope you can get some help

wedgewood profile image
wedgewoodā€¢ in reply toCharlie27612

The problem with prescribing sufficient B12 injections to patients is that if too many patients get the amount that they really need to feel well and be rid of symptoms, is that it will impact doctors take home pay . The surgeries get paid to cover the cost of running the surgery , cleaners , receptionists and nurses are included and paid for out of this sum . If too many nurses are employed to give the injections , there is less money to be divied up amongst the doctors ā€¦ā€¦ā€¦. The cost of the actual B12 ampoules is low ( but I was astonished to find out that I pay less for my ampoules from German online pharmacists than the NHS pays to UK manufacturers.

Charlie27612 profile image
Charlie27612ā€¢ in reply towedgewood

Really.....thats interesting isnt it, no wonder the nhs is broke

Showgem profile image
Showgemā€¢ in reply toCharlie27612

Iā€™ve sourced my own supplies of b12 for several years now following advice from wedgewood that Iā€™ve seen on here šŸ˜Š thank you.

I have degenerative disc disease and osteoporosis. Iā€™ve had lower back pain for many years and several falls, mostly caused by numbness in my feet and balance problems as a result of my late diagnosis of PA. I now have 2 compressed vertebrae and a prolapsed L5 disc, I had an MRI to investigate this and last week had a nerve root block steroid injection as the disc contents are impinging on the sciatic nerve and narrowing the spinal column which has been causing much of the pain. Iā€™m still waiting to see if itā€™s going to resolve at least some of the pain. In the meantime I need to take so many painkillers as the pain gets very bad, Iā€™ve been trying to cut out at least the Naproxen as I think these are likely worse for the stomach than the codeine or gabapentin but unfortunately I fell again early this morning so have started taking them again.

I take a probiotic with Betaine and pepsin with my main meal and a yogurt at lunchtime. Is there anything else that would protect my stomach while Iā€™m taking these painkillers wedgewood ?

Charlie27612 profile image
Charlie27612ā€¢ in reply toShowgem

I hope you are ok after your fall, I had numerous falls too,but my balance is one thing that has improved, I couldnt close my eyes before without falling or losing balance....it happened in sainsburys once, everyone ignored me, so embarrassing, a staff member came in the end, this illness is so horrible I will never understand why dr's cant educate themselves if they dont realise the seriousness of it. I feel so alone at times, I feel even friends and family cant understand, they often say "oh arent you better yet "......close family have accepted how I am after 2 + years though šŸ˜

Showgem profile image
Showgemā€¢ in reply toCharlie27612

My balance has improved quite a lot but I still canā€™t hold my balance if I close my eyes or at night when itā€™s dark.

I know what you mean, most people think that it isnā€™t that serious as you can get injections so everything should be alright once theyā€™ve found out whatā€™s wrong.

I had every symptom yet my b12 was never tested before, the symptoms were really obvious by then and my level was only 58!

I believe that it should be included in any regular blood testing but the medical profession have no proper training in PA so they arenā€™t looking for it.

wedgewood profile image
wedgewoodā€¢ in reply toShowgem

Untreated or undertreated B12D/ Pernicious Anaemia can result in S.C.D.of the Spinal cord ( subacute combined degeneration ) Iā€™m not saying that that has caused your spinal problems. But I hope that you are receiving enough B12 injections . Painkillers only make the pain bearable for so long . They need to find the reason for your spinal problem.

Charlie27612 profile image
Charlie27612ā€¢ in reply towedgewood

I thought that too, I also have back problems, this will be something else I bring up I hope the other lady reads this too

wedgewood profile image
wedgewoodā€¢ in reply toCharlie27612

Iā€™ve messaged her.

Sleepybunny profile image
Sleepybunnyā€¢ in reply toCharlie27612

PAS have a leaflet on SACD, sub acute combined degeneration of the spinal cord if you're interested. Maybe GP would find it interesting.

pernicious-anaemia-society....

PAS members can access the whole leaflet.

pernicious-anaemia-society....

If GP says SACD is not possible in someone with normal serum B12 levels, might be worth showing them article below.

A search for "Turner SACD functional B12 deficiency" will show an article where a patient developed SACD even though serum B12 levels were normal

Sleepybunny profile image
Sleepybunny

Hi,

Gentle online hugs to you.

"My iron dropped last summer and I had an iron infusion in july,"

Do you have any iron results for this year 2025?

Have you had a full set of iron tests or just ferritin?

Link about iron tests

labtestsonline.org.uk/tests...

Have you got recent Vit D results?

Many on here report folate, iron and vit D deficiencies as well as B12.

Thyroid

I wondered if you feel your thyroid condition is being treated adequately.

Thyroid problems can sometimes cause neurological symptoms.

Thyroid UK forum on HU is a good place to ask questions.

I'm not medically trained.

Charlie27612 profile image
Charlie27612ā€¢ in reply toSleepybunny

Thankyou for caring, hug appreciated šŸ˜Š my last iron panel showed slightly high iron but that was 4 months after infusion, so to be expectedMy vit d has risen to 105 from 50 but its taken these past 2 years, I take k2 with that as well, and I do feel stronger in my legs and arms

I have just changed surgeries and I am due a thyroid test soon, I was going to ask if they would do a folate at the same time, then I can see if its dropped at all.

When I had the iron infusion he said it should last about 2 years, I do eat some meat, liver sometimes ,chicken,green vegs and fish cheese and the occasional egg. Its all a puzzle and I constantly think what on earth would I feel like if I wasnt treating myself and had to rely on 12 weekly b12 like my poor sisters do

Charlie27612 profile image
Charlie27612ā€¢ in reply toCharlie27612

I do belong to thyroid uk on here, very good advice, to think for years I just took my gp's advice as gospel, it all changed when pandemic arrived, every gp at my surgery left as it had been taken over by a management company, we lost dr's that had known us and our families years, it will never be the same, the system is broken.

Sleepybunny profile image
Sleepybunnyā€¢ in reply toCharlie27612

I hope your sisters will find their way to this forum.

Charlie27612 profile image
Charlie27612ā€¢ in reply toSleepybunny

I have tried believe me, one has crohnes so has been treated for 40 yrs by nhs, the other still believes in her gp and the standard undertreatment, as I was diagnosed privately she thinks I'm "being overtreated"šŸ¤£ I love them dearly never the less......

DiNL profile image
DiNL

I donā€™t know if this helps. I travelled to South Africa with my b12 ampules. I took extra (just in case) and kept what I was using in the fridge. As it was summer there. The rest I kept In a cool dark cupboard. I used the ones from the fridge and was doing well and then got home. I decided it would be ok to use the ampules that had been stored in the cool dark cupboard. But then after a very short time neuropathy appears in my hands, exhaustion, eyesight issues! I can only assume that the ampules had deteriorated in SA. Due to the heat! So all I can offer is thatā€¦.. once I started a new batch my symptoms slowly went. However I also have to say that at times my symptoms sometimes appeared - healing isnā€™t linear (certainly for me) and now they are mostly gone

Caradoc1a profile image
Caradoc1a

I'm so sorry to hear about your difficulties. On the thyroid forum they advise taking methyl folate instead of folate acid. 400mcg a day in a vit B complex. I use Thornes basic B complex. I don't know if that might help!

MindfulSquirrel profile image
MindfulSquirrel

Sorry Iā€™ve jumped straight to replying so apologies if this has already been covered.

Folic acid completely messed me up - 5mg per week just wasnā€™t enough and Iā€™d get really anxious after a few days. 5mg felt great initially but then caused more problems than the original deficiency- terrible insomnia, incredible fatigue and low mood, my already hypermobile joints started feeling like elastic and I was getting subluxations in areas previously ok.

I did a lot of reading about folic acid and how too much can cause a build up of unmetabolised FA, which (simplified version) takes up the space in the cells and blood that the folate you can use is meant to take. Whilst itā€™s still being researched, there are papers that suggest this is more likely for those who have the MTHFR gene mutation, which it turned out I have. There is a lot of questionable stuff out there so I kept all my reading to scientific journals - I probably still have some links saved somewhere if it would help?

Iā€™m doing much better on folinic acid, of which I take 1200-1600mcg on my injection days, though I did take 800mcg at times when I was waiting for my red cell folate to go down, and I did temporarily get some of the B12 neuro symptoms come back when it was dropping, which I ultimately ended up putting down to renewed waking up symptoms. I also regularly took a B Complex with 50mcg methylfolate in it, until that in itself made my joints worse, and now I take that once or twice a week. I also now seem to be able to tolerate a B complex with 50mcg of folic acid, which I also take once or twice a week.

yorkshiregirl4 profile image
yorkshiregirl4

Hello Charlie27612, Just a few comments from me which others may well have commented upon already. EOD injecting of B12 has no specific validity as a regime and I would suggest you try keeping an open mind about regularity of injections. I SI every day and can tell if I miss one injection at the moment. I struggled with increasing folate levels for ages but had excellent advice on the thyroid forum to try Jarrow Formulas methyl folate and levels are slowly improving.

My vitamin D levels have always been a challenge but the BetterYou D3000+K2 oral spray have improved this, although fairly slowly. I had an iron infusion 16 months ago but I do not believe any doctor knows how long it is likely to last. Someone who posts regularly on this site had dreadfully low iron and needed several infusions to even start to improve. I now check my iron levels every 4 months.It is useful to increase iron in your diet, alongside vitamin C. I am also trying sublingual Biocare iron drops because it is common with PA/B12D for absorption in the gut to be compromised. Keep away from dairy for an hour before and an hour after iron medication.

It is such a challenge to identify what to alter next in your treatment scheme. I started with getting the B12 fairly steady and feeling better and then supporting that with recommended vitamins etc. Remember to change just one thing at a time or else you will never know what improved your health. As has already been said stick with the same lab. for blood tests. I went to a different one recently and am about to re-test with my original lab. after receiving some unusual results. Good luck and hope you feel better soon.

Charlie27612 profile image
Charlie27612ā€¢ in reply toyorkshiregirl4

Thankyou for replying, I have done every day b12 for short periods in the past, and will try that againAs far as the iron infusion goes, the same dr has reviewed each blood test, so the thinking was if I kept to the same regime my iron should keep pace as it took 18 months for it to drop from the start of treatment.

I think changing one thing at a time is good advice , I do keep a diary of symptoms etc

On the methylfolate....I read that it can cause anxiety in some people....but will look into it.

I'm going to get appt with my new gp,but have been wary due to my experience before.I have no idea what the new practice will say about si etc....I dont want them doing the pointless testing of b12 etc...I will also contact the private dr and ask about changing folate,

Something has been going on in my body for 4 years now, allergies to many antibiotics that I have had before......My vitamin d didnt budge with oral spray or patches I now take one combined with k2 recommended by private dr and its working.

The tingling is there in my face again today, so I will do a b12 daily with my new batch and see if it changes anything šŸ˜Š

Showgem profile image
Showgem

sorry to have jumped on replies to your post.

I think your symptoms are just that, the facial crawling skin is one of the first symptoms I get back if I delay in injecting. Once my folate levels were optimal I cut back to daily supplements of 400mg, then again to twice weekly and itā€™s been enough to keep my folate at a good level, I think this is still the case but havenā€™t allowed the surgery to test for a while as if I do they unfortunately always test b12 at the same time.

Charlie27612 profile image
Charlie27612ā€¢ in reply toShowgem

No problem, its nice to know when others have the same problems as you, I have honestly felt like I was going loopy before now, especially trying to explain the tingling crawling sensation, and I used to feel as if water was running down my legs too, I will never forget the face of an A and E dr when I tried to explain šŸ™„ I do feel better today so will carry on with a lower dose of folic acid ( may try the methyfolate) but will research that first as not sure what brand etc. Will do daily for a few more days, then every other again, take care

Showgem profile image
Showgemā€¢ in reply toCharlie27612

I had that feeling of cold water trickling in my legs, itā€™s returned again with the sciatic nerve impingement. I couldnā€™t feel if the water was too hot when getting into a bath until I tried sitting down down šŸ„µ and for years the family called me asbestos hands when serving dinner as I could pick up very hot plates and dishes. The hand symptomā€™s recovered before the feet started improving, I was told this was because the nerves to the feet were the longest and Iā€™m hoping this may be happening with the nerve block injection although I donā€™t entirely understand how it works but Iā€™m just hoping it does.

fx9898 profile image
fx9898

High levels of Folate will stop B12 from being absorbed and it will also mask a b12 deficiency. I wonder if that is what is happening here and by not taking folate b12 is actually starting to work?

healthunlocked.com/redirect...

Charlie27612 profile image
Charlie27612ā€¢ in reply tofx9898

This is what I'm trying to work out, I have ordered another folate test to see if my levels have dropped since nov, as I have still been doing eod b12 in that time, also checking my magnesium. So will see, thanks for your reply.

fx9898 profile image
fx9898ā€¢ in reply toCharlie27612

Either way your folate levels are too high I would stop supplementing it. Yes B12 can use up folate but you have an ample supply.

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Hi Everyone - Iā€™m new to the group and have just been diagnosed with PA. My b12 blood test was 311...
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