following my recent blood test for my annual diabetes review I received a text from a doctor at my surgery yesterday afternoon. I was told I have Vitamin B12 and folic deficiency. I was told I would be contacted to have an injection and folic tablets. Of course this has left me worried. For the last 18-24 months I’ve had fatigue, lack of energy,brain fog, weight loss, anxiety,stress, depression, chronic diarrhoea, the list goes on. I’ve dealt with a stressful house move and the deaths of both in-laws and dealing with their affairs too. I’ve lost friends because of this as I haven’t felt bothered to stay in touch. I’ve distanced myself from family too. I know I’ve been feeling depressed and my lack of energy has stopped me from doing regular cooking and activities I used to enjoy. Will this treatment help me because I can’t take much more of this feeling. I want to feel alive again.
Just diagnosed with Vitamin B12 and f... - Pernicious Anaemi...
Just diagnosed with Vitamin B12 and folic deficiency
Yes.It will take time though.
Get a copy of your blood results.
I imagine an Intrinsic factor blood test will be done before b12 starts.
This shows up 50 % of those with PA .
Worth having at your stage but if negative does not rule out PA.
B12 is treated before folate .
In my opinion it dies no harm to take a supermarket A-Z multi vit as things get out of balance.
Vit D,ferritin,iron can often accompany a b12 abd folate deficiency.
I too had a gradual build up of symptoms .
Then falls then a collapse .
Then first ever b12 and folate check.
My trigger was the menopause in Hindsight. As same diet ect and have dealt with alot before.
Alot of stress with caring for very ill daughter and mother at that time.
Never know what the 'last straw was'
I'm guessing strangely it was a sudden death of a very young cat.
I'd nurtured and brought on from a very rough start for over a year.
That same weekend my mum had a bad fall .
My daughter in Aand E and the cat found dead.
Tooo much in 26 hours!!
Stress i think depletes lots of our vital nutrition as our bodies working hard.
Lots of information and support on here.
You are certainly not alone with your symptoms
You will improve.
Time and for me gradual .
P.s metformin known to deplete b12.if type 2 diabetes
Also PA an autoimmune disease if you are on insulin type 1 diabetes ( so another autoimmune disease )
thank you. Been on Metformin before. I’m disappointed I haven’t been checked for this before. I feel so down every day and I never feel like I can get through the day. It’s impacted on my relationships because I feel irritable and depressed and generally unwell. I hope I will start treatment soon so I can move on with my life.
Yes. I was cross hadn't been tested before collapse.
Should be on the blood forms to tick!
Or ob the doctors radar
It happens very gradually over yesrs .
Often symptoms dismissed or simply mis diagnosed as stress menopause ibs depression 😢
So many symptoms do cross over that's why Should be tested along with iron ec5.
What was your serum b12 level and folate ?
Request a copy of results for your own records
b12 was 139 ng/L
Follate was 2.2 ng/L
This information on my NHS profile.
Make sure b12 treated before folate .A short term higher dose of folic acid is often prescribed
I think when very low our bodies bound to have a shock with the sudden Influx of b12 and fof ypu folate.
My very first b12 serum blood test
106 pg/ml (200-900)
Not sure of the measurements used for yours.
Maybe similar.
Should have range in brackets on the right .
Your folate well below range.
I'm sure you will get the benefits when both of these levels are raised .
Then you will need a maintenence dose for both .
I hope you see improvements soon.
good evening.
Just an update. Had my first loading dose of Vitamin B12 this afternoon and have neither 5 doses booked for the next 17 days. Apparently I am on this indefinitely and going forward from July it will be every 3 months. Started taking the folic acid today too. Asked the nurse if I had PA and she just looked at me with a blank expression. Anyway let the battle begin as I am looking forward to some progress with my health. It’s been too long feeling like I do.
just picked up my 3 month supply of folic acid tablets. Only instruction is to take 1 5mg tablet per day. As mentioned before my first B12 injection not till June 16th. So I guess I won’t touch and wait till I see the nurse then for more guidance.
Generally speaking, there are two populations of patients with B12 deficiency: patients with blood symptoms, and patients with neurological symptoms, with very little overlap between the two populations. Recommended treatment is different for each of the two populations: for people with blood symptoms, recommended treatment is a series of "loading doses", such as daily injections for a week, followed by an injection once a month, or once every two months, or once every three months; people with neurological symptoms need much more intensive treatment, starting with injections every other day or twice a week, continuing for up to two years, usually with the caveat that treatment should be based on symptoms. (I don't know whether there is a suggested course of treatment for B12 deficiency corresponding with use of Metformin.) Doctors seem to want to ignore recommendations and treat all B12 deficiency patients as though they have blood symptoms, rather than treating neurological symptoms resulting from B12 deficiency. These patients often respond poorly; the lucky ones find this forum and often choose to self inject B12 purchased over the internet from Germany, where injectable B12 is sold over-the-counter, rather than by prescription only.
thank you for your response. I don’t think I have PA., I don’t know either way. To be honest I only have a text message from my GP on Sunday stating I have a B12 and folic deficiency as a result of my blood test taken at my annual diabetic review. lm not in a position long term to buy injections either. I have my 5mg folic acid tablets issued today but no B12 until I see the nurse on the 14th. I don’t know what the plan for me is. I’ve read I shouldn’t take the tabs till after the injection. I’m in the dark but for over a year I have suffered with depression, fatigue, blurred vision, nausea, weight loss, muscle pain and generally can’t be bothered to do anything. I’m confused to say the least.
I am far from expert, but my impression is that B12 deficiency should be treated before folate deficiency is treated because treating folate deficiency first can disguise B12 deficiency, thereby making it more difficult to diagnose B12 Deficiency. Again, I am far from expert on this matter, but it seems logical to assume that if B12 deficiency is already diagnosed, then cautions regarding proceeding with folate treatment are moot. Again, I am far from expert, and wish that someone more knowledgeable than I am would weigh in.
From my readings, it is both that it masks b12d, but also taking folic acid without b12 *accelerates* nerve degeneration in those with b12d. I was a bit suspicious that in the 2nd case the problem was merely the lack of b12, but there seems to be more to it than that, though i'm not clear on the exact mechanism. I would have to find those papers back.
JayceeJC In my non-medical opinion, I would start folic acid on the same day as starting the b12, prior to the injection. Not earlier, but also not later, since b12 requires folate to do its job.
WiscGuy quick search found back this thread healthunlocked.com/pasoc/po....
I've read this idea in other papers - supplementing folic acid without b12 in untreated b12d folks worsens nerve damage - but perhaps they were all citing these older studies. I've no brainpower left to continue trawling through google scholar but please feel free to do so 
i do think it would be useful & interesting to have a more definitive answer!
That's bad no Instructions to wait. Pharmacist could've advised.
B12 does need treating first .
Try and push for earlier injection .
I had this wait also at the start .
I was told I needed them then i had to do the pushing to get going on them. 🤦♀️
thank you. I found the pharmacist to be unhelpful. She wasn’t willing to help find out why the surgery says they sent the prescription and them not receiving it. I’ve asked to be contacted if they get a cancellation before the 17th.
just a quick update. Received all 6 injections by the 30th June. Blood test to check for improvement middle of August.
I’m the meantime I am still taking folic acid tablet every day. If blood test ok I’m due to have a 3 monthly injection starting from 22 September
I do feel more motivated and energetic so
It can only be positive news now.
However, yesterday I woke up feeling very hot and nauseous, couldn’t find a thermometer but I felt like I was perspiring. After about 1 hour and continuing retching I felt ok though tired.
Is this related to folic?
Yes best to wait to get b12 started first. 5mg folic acid will be short term then level retested.
Then a maintenence dose of 200- 400mcg usually .
Hope all goes well
Do not despair Jaycee. I like you was diagnosed (after I queried blood test results) with low b12 and folic acid about 2 months ago. I have physical, neurological and mental neurological symptoms. Having B12 deficiency can affect/change one s personality, with anxiety and depression. The loading injections and folic acid really helped ease and stop some symptoms. But it takes time, and everone is different. I now self inject daily to get the treatment I need. Suggest, look at NICE recommendations and Pernicious Anaemia Society. All best wishes.
Thank you for your response. Been on Metformin for 10 years. Why haven’t they checked me for this before. I’ve been so low with all these symptoms you’d think they would check it out. I’m hoping I’ll get treated and feel better. Wasn’t even considering this could be PA. Never heard of it before. I’ve emailed my surgery this morning so hopefully an appointment soon
Bless you.
At least your low B12 and folic acid has been picked up. Do as Nackerpan has sugested and get copies of your results. The depression and distancing yourself will be due to your symptoms. I felt the same and became suicidal which is very unlike me.
You should receive a loading dose and then they will give 3 monthly injections. If no improvement you can do as I did and ask for 2 monthly which in my case was granted. Many of us on here self inject but see how you go. Learn about the condition and ask questions if you feel the need.
You will get a lot of good advive from others on here.
Hi Jaycee
Your situation resonates with where I was 8 months ago. I am now finding my life again after it falling apart slowly for many years and me not knowing why. I had physical and neurological symptoms and I kept crying and falling sleep.
After loading doses and self injecting every other day, two months ago I upped my dose to every day and what a transformation!
As to friends and relationships- those worth having will still be with you - have the conversation about what you now know is happening to your body. Friends worthy of you will understand and those that do not … well it’s their loss!
You will need to allow your body time to recover and repair. This is not a time to be heroic and push one’s self to do what kind and body does. It want to do as it serves no purpose. This is the aspect I have found hardest to understand and come to terms with.
Finally keep a diary because symptoms generally get worse for a few weeks when all those deprived nerve endings and cells get a B12 boost. I record my treatment, symptoms and activity and looking back it helps me to tailor my treatment to live my life to the full.
This forum is fantastic and has helped me navigate this unexpected and new health path. You will navigate to your new self too. Big hug. 🤗🤗🤗
thank you very much for your reply. Im hoping I’ll get a call from the surgery today so I can start my treatment. I have been feeling so down for months. Really what some “get up and go”. Happy to self inject if asked. Also hoping chronic diarrhoea will subside because of this issue. Recently I was diagnosed with a prolapsed uterus so I really need to tick some ailments off the list. I have a life long friend I can talk to on the phone but apart from that I don’t have anyone close. Husband isn’t very supportive, he’s had a lifetime of his mother being I’ll and he doesn’t like hospitals. I think he thinks it’s all in my mind and I need to not overthink everything. Easy said that done.
Hi Jaycee
Chronic diarrhoea alone will make you feel rubbish. I am drinking kefir and kombucha as that helps regulate my tum - you may have tried it already - works for some. Hopefully you know the cause or it’s under investigation.
It is hard for family and partners when someone they rely on has a hidden disabilitating illness but hang in there - there will be light at the end of this tunnel.
I doubt very much you will be invited by your GP to self inject - you will probably be offered the NICE guidelines if you are lucky which is likely to be inadequate for your needs if you are looking for a speedier and more comprehensive recovery. So be prepared to take things into your own hands like many of us on this forum have had to do - you can’t overdose on B12 and if I can do it (a needle phobic) then you can!
The good news is that recovery pathways are appearing - grasp each one and walk tall!
All the very best 🤗🤗
I was wondering if I’m just suffering with a low vitamin B12 deficiency rather than the PA that you and others have or is it a case of waiting a few weeks to find this out. I’m hoping for a quick fix.
I was looking for information regarding treatment of B12 deficiency coexisting with use of Metformin. I posted in a new thread:
Metformin will have robbed you of your B12 . This has been know to doctors for years . But of course that doesn’t totally rule out P.A. You can be a diabetic with P.A.. The test for PA is notoriously unreliable .About 50 % of PA patients test negative for PA !
Keep us informed of progress or no progress !
For so many of us comes a moment when you see that the health care you've been given is distinctly sub optimal. It's disturbing and infuriating but with time strangely empowering. You realise that you can read about and understand your medical condition and work out what your body needs. The medics then become these people you have to persuade or cajole or simply work around, they do not have your best interests at heart.
One piece of advise. Do not take folate before you have had all your b12 loading doses. Folate can cause neurological damage in people with b12 deficiency. If you Google this you'll find details.
thank you for your reply. Interesting what you say about taking folate after injection. I’ve had the prescription for B12 and folate sent directly to my pharmacy yesterday. Should be ready to collect today. However, although told urgent to start B12 I can’t get an appointment with a nurse to administer it until the 17th of June! I wonder if there’s anything on the folic stating take after B12 as I haven’t been told anything. Not spoken to GP only text received following FBC test. Rather nervous about starting on this. Do I have to declare to travel insurance as I was hoping to go away for a week. Can I go away even, How will I feel when taking B12?
You could ring round local pharmacists and see if they'll administer the shots. Or a dentist or do you know a nurse?
I don’t know a nurse but I could ask the pharmacist. I’m worried I’m going to feel worse than I do now. I just want to get my mojo back. I don’t know how long it will take to get my level back to normal. I wondered if a vitamin b12 supplement 1000 dose would be enough when it is normal. I don’t want to be taking more meds. It’s early days.
I don't know!
My best guess is that oral b12 at 1000mcg is unlikely to keep your b12 levels optimal given they are so low. Your b12 deficiency is quite likely to be life long
and therefore require long term management.
Ask the GP to test for PA.
it’s only been a week since I was diagnosed with a prolapse uterus and Monday I started a Diabetes reversal programme which I’m going to have to put on hold as it’s too much to take in. I don’t think I should be trying to change my diet at this point as well.
Scientist, not medic.
You're at the start of the journey, and it's a matter of sticking with it. It's just one more thing you'll cope with, and you'll feel better soon. However, it's a life-long thing, so keep at it. Then it'll be time to tell your recently lost friends that 'It wasn't you, it was the B12!' and start building fences. They'll understand, and you'll be able to educate them too.
Thank you. Re the friends. I’ve since moved away, only friends due to interests in the village I was in, they were odd and only used me when they wanted something. Blocked and deleted them from phone and emails😊 It’s their loss. Now I need to concentrate on my new health issue. I’m worried to say the least. Just want to start on my treatment but can’t get my first jab till the 17th.
I have had most of those symptoms, and was diagnosed in January of this year. Response from the surgery was pretty useless. Had the first lot of injections, plus one booster two months on. To be honest, I felt a bit better during the loading dose, but that only lasted a couple of days. The booster made no difference. There has been complete indifference from my doctor, and I had to really fight to get a referral. Even now, I am not sure that a specialist will see me on the NHS. In the end I went private. I've only had the first six injections, self injecting, every other day. Waiting for my supply to arrive from Germany. Cost about £110 for around 6 months supply, including needles. Find the self injecting difficult. I have diabetes too, so don't generally know whether the needle has gone in or not. Given a couple of doses to my trousers! Unfortunately, no difference yet. The specialist I saw at the Nuffield Hospital in Cambridge was very nice, and at least explained things. He said it would take at least three months of regular doses, possibly six to twelve months, before I felt better. Also, some of the more mental conditions - brain fog, confusion, anxiety, memory loss, depression etc might not get better because I may have had the condition for more than a decade. But he was fairly sure that they would not get worse, and the physical problems should improve. So I would probably, at this early stage, recommend going private if you can afford it. For me, it was £250 for the appointment and £30 for an interim set of injections, self injecting. Then, as said, about £110 for six months supply. So a lot of money. But like you, I have felt so bad of late it is worth it if it has an effect. Just hoping it does...
I had a similar experience, I’m a keen cyclist and my endurance levels were diminishing substantially, sufficiently enough to warrant a visit to my GP . I thought it may be Thyroid related but after various blood tests done on tbe nhs and further tests paid for by myself. Low B12 , Folate and others came back . Following taking some supplements energy levels improve on a daily basis. I’m starting to get my mojo on a bike back.
For people with low or deficient B12 and low or deficient folate, it is considered by some people to be a very good idea to start treating the B12 levels a few days or a week before adding in treatment for low folate.
The way I've understood this issue, rightly or wrongly, is that the body needs folate in order to make use of B12. So if B12 is very low and folate treatment is begun the B12 levels could be exhausted very quickly, and that could accelerate the development of "Subacute combined degeneration of spinal cord".
There have been suggestions that this is not necessary, but there is no consensus on it that I'm aware of. And for the sake of a delay of a few days or a week in starting to take high dose folate, I can't see that it is likely to do any harm.
I have found a few links on this subject that might be of interest :
.
Interaction between excess folate and low vitamin B12 status
sciencedirect.com/science/a...
.
High folic acid or folate combined with low vitamin B-12 status: potential but inconsistent association with cognitive function in a nationally representative cross-sectional sample of US older adults participating in the NHANES
ncbi.nlm.nih.gov/pmc/articl...
.
Perspective: The High-Folate–Low-Vitamin B-12 Interaction Is a Novel Cause of Vitamin B-12 Depletion with a Specific Etiology—A Hypothesis
academic.oup.com/advances/a...
.
Excessive folic acid intake and relation to adverse health outcome
sciencedirect.com/science/a...
.
High serum folate is associated with brain atrophy in older diabetic people with vitamin B12 deficiency
link.springer.com/article/1...
.
my 6 month update. Had my 3 month booster in September and now due for my next on 11th December. However, the energy etc I get initially soon diminishes and today I’m feeling rather underwhelmed in so much I can’t be bothered to do anything. Not sure if it’s an ongoing issue from this horrendous cold that is sweeping the UK population at the moment. This is my 3rd week and have had to have antibiotics to help me through it. I thought it was Covid but tested negative every other day. I’ve never known cold symptoms to be so excessive.
Regarding the B12 booster should I ask for more frequency as I would like to be more active and less “lazy”.
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