I need advice as to what is going on with me 🙄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 🙄
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,
Written by
Charlie27612
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Hi Charlie, I’m so sorry you’ve been going through so much! I understand the pain.
First of all, I’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 worse—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 won’t cause any complications!
This is just my personal experience—it may not relate to you, but I thought it was something to consider! I hope others can share their opinions as well!
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 🙄 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 🙄
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 🙄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 sick🙄 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 🤣
Thankyou for caring, hug appreciated 😊 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
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.
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low b12 - When will this improve?
Self-injecting 2 ml EOD.
advice please b12/folate 
Symptoms returning?
