Hello I’m a new member, after joining a Facebook group for help and advice with my health issues, B12 def, folate Def and also under active thyriod. It worried me with the advice given. I didn’t understand most, I was given a so many names of vitd to take, constantly going on about cofactors which I don’t even know. I become over whelmed and now think will I ever be able to get better ? I’m scared to inject B12 myself everyday, not to mention I couldn’t afford it. Sorry to go on, a little of why I am here. Since 2003 I have had issues absorbing B12, I was given injections every 3 months and to my fault I never kept on top of them, I wasn’t aware then how important this played in my health. I’m now still feeling worse then ever, my recent bloods in December 2020 I have added a pic below. My gp started me on 5mg folic acid which I take daily, I also take B12 oral spray 1000 daily abs Vit D oral spray 3000 daily. My skin is so pale it’s like paper white, I can never tan not even a little, I have these red pin prick blood spots on my belly area abs chest, not loss but enough to notice, my feet are constant ice cold, I’ve gain a lot of weight, I feel sick most days, I’m constantly tired and have no energy. The aches in my legs are painful, my mouth always feels dry, my vision has got bad and I get terrible headaches. Also I now have severe panic attacks and anxiety which I don’t know why has generally nothing is going on in my life to cause it apart from my health. Every time a injection is due my gp now wants to check my levels before giving me it. Any complaints I have she says is due to having no thyroid and being under active. (Had thyroid removed 2018) however I explain to her I felt like this before that and constantly feel like it. All these problems have turned me into a crap mum to my 3 kids, I’m not able to do anything cause I have zero energy. I just want to feel better or be pointed in a direction of what I need to say and do when approaching my gp. I just want to know if I have PA ? Current meds I’m on now is:
Levo 175mg daily, folic acid 5mg daily, B12 injections 3months, B12 oral spray 1000 daily, Vit D oral spray 3000 daily, iron oral spray 1000 daily. I’ve been on these since last year. So sorry for long post, I’m not sure if I have ever had a instrit blood test, what would that appear has on bloods ? Any help and advice is so appreciated 😊 sorry I’m only able to upload one photo of blood results. So I add
Folate 1.8. (3.8 - 9999)
B12 serum 242 (197 - 771)
I may have other bloods if needed that I can give results for.
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I can assure you that you could afford to self -inject B12 . A self- injection need cost no more than about £1.60 for everything .So less than a coffee at a café! A B12 ampoule , a withdrawing needle ,an injection needle , a syringe and a swab . It is the most efficient method of getting vitamin B12 into your cells . I have to self -inject weekly -takes all of 5 minutes .You will get good advice from more astute members than myself , but if you should need to go down the self injecting route , I will give you full instructions. Self -injecting has really saved me, when my G.P refused my injection more regularly than once every 3months .If you have Pernicious Anaemia ( and you might have , even if you tested negative ) injections are the only answer . Thyroid problems are often accompanied by P.A. ,as autoimmune conditions seldom come alone ., And even if you don’t have P.A. B12 injections , no matter how many , can do you no harm . Best wishes .
I can carry out Injections, when I was trying to have a baby I had many issues which I now know was due to this, so I went private and had to inject progesterone 3x a day for 9 months. I’m also prescribed B12 injections which I have at home abs take one to the surgery when I’m due, however my gp will only allow one every 3 months. I suffer with pins and needles, numbness, tinnitus which sounds like it’s in my brain and drives me crazy, also I will get ice cold feet yet it will follow by sensation that my feet are burning. Muscle and joint pains which they have given me 30mg codine and naproxen to take. When I suggest PA I’m told no I don’t think so, it’s your thyroid or anxiety causing these problems. Just feel like I’m banging my head against a brick wall
Totally agree. Keep away from Facebook groups too, they had me totally confused. Not many of them could give an in depth answer as they likely didn’t know.......just stating a ‘one fix sorts all’ solution, which it’s certainly not. I liken those sort of groups to a pet shop giving advice on an exotic species.......99% wrong. Self injecting was my saviour and as Wedgwood says, so easy. Good luck.
Agree ! They do not like being questioned, all I kept being told was co factors which I didn’t understand. When your. It able to understand they reply to you like your stupid. But it’s so much to take in and learn. I’m still learning so much and finding new things out daily now.
That’s why I came off Facebook altogether, so much misinformation and stuff you don’t need to know anyway. Good luck with your health., things will improve. I spent a good 12 months trying to get sorted and thinking I would never feel well, but 2years in after taking matters into my own hands am so much better and rid of the anxiety that docs seemed to think was the root of my problem, when it was the total reverse.
No I’ve been on B12 injections since I was 21 I’m now 38, I’ve had B12 injections for 17 years. Those results was 8 days after a injection at my Gp surgery. Plus I eat a lot of food containing B12 abs also supplement daily on B12 oral spray 1000. The folate wasn’t a new issues, I’ve had it before however not for over a year. Is it’s back down and I’m on 5mg folic acid daily since December 2020.
if the B12 result was blood taken 8 days after an injection then you obviously need B12 injections a lot more frequently - at most 8 days, probably much more frequently than that.Have you tried keeping a diary of your symptoms?
Yes I have kept dairy of how I feel and symptoms. I took it to my gp who told me that I needed my anxiety meds stretaline increased, because this was all due to anxiety. I cried and begged and explained the reason I have anxiety is because I feel so poorly and no one will listen.
Yes I think I will, I have the B12 prescribed and keep it at home, I take one to the dr when I’m due a injection. However I wouldn’t even know what needle to order or where to order the correct needles to use. I can inject has I did so with progesterone during pregnancy. I’m fine with needles. Is there any links to ordering the corset side needle or needles package ? Many thanks
you can inject intra-muscular or sub-cutaneous - I do subcutaneous using an insulin needle, sourced from medicare. Suggest you repost for advice on needles if you intend to inject IM.
I imagine you are due a blood test. Thats a high dose of folic acid. When prescribed its for a short time and then bloods done. F levek okay You should then be on a mich lower maintenence dose 400mcg daily.
I have follow up bloods on 19th April, I have regular bloods due to having no thyroid and being hypo, so my levels are checked every 8 weeks. Problem I have is my Gp reading those B12 results and saying oh it’s ok it’s in range, when I only have those results from having a injection 8 day prior.
I have a print out of my bloods from December 2020 I had a concern that my wcc was high and also my lymphocytes was high. She didn’t seem concerned and said we will repeat when your thyroids is due. I’ve added pic below. I’m not sure how to read full blood results. Also if I should be worried. I do have hypothyroidism
I have read that 5mg folic acid is high, yet I never knew that. I’m told to take it daily and she will review that in 4 months. I do feel like I’m suffering from taking that. I mean I don’t feel great but I’ve noticed when I don’t take a 5mg folic acid I feel slightly better.
Please do not reduce your folate! It is below the range already. I do think your GP should look into this more deeply. Maybe consider changing your GP.
I do want to change my gp has I have moved, but I’m scared I jump out the frying pan into the fire so to speak, if that makes sense.
I feel for you...so many times I read about 3 monthly injections and the suffering caused to people who need it much more frequently....read the NICE guidelines ... you have neurological symptoms and the guidelines state injections every other day...print them off and give them to your GP and explain they are causing you harm by not treating you correctly.I have managed to get mine prescribed monthly but I also self inject, subcut into my tummy, every 4 days and the difference in my health is like night & day.You are on the correct prescribed 4 month treatment for your low folate, I had this too and now maintain a good level on 400mcg daily.
I also take high dose vitamin D to keep my level around 150.
I was very unwell, mentally & physically...almost housebound for a year and I was given a diagnosis of CFS/ME & offered anti depressants....it was only by doing my own research...not easy when you are so ill....that I got on the right path.
Try your GP again with the NICE guidelines but meantime please treat yourself, it is very cheap to do and will not harm you, quite the opposite....you don't have to suffer like this.
Thank you, I have gave her the nice guide lines about every other day injections. She said no. She said I r only complained a few times of symptoms linked to Nureo B12 def. I stated that I assumed it could my thyroid related so just suffered and carried on, I also stated it could have been anxiety which she told me I have so carried on. I’m now more less housebound, I’m scared to leave incase I have a panic attack, but most of all I have zero energy. I have 3 children who are suffering also because I have no energy to take them out or even play. This has turned me into the worst mum ever which make me feel even more down when I see my little ones are suffering because of me. x
Have you had a neurologist referral? I was referred last year.
Since becoming ill I started keeping a daily symptoms document and I emailed a copy to the neurologist (which he was very grateful for) prior to my appointment which resulted in him prescribing injections titrated to symptoms & I am to have them monthly. My local surgery tried to change this recently but I referred to the letter from the neurologist and monthly injections have continued.
Might be worth asking for a referral...keep a symptoms diary and email a regular copy to your GP to be put in your files.
You are not the worst mum ever, you have an undertreated deficiency and you will get better. At the beginning of my b12 'journey' I wrote to Tracey Witty @b12deficiency.info and she was so helpful...I can't recommend her highly enough. She will write letters for you...I believe she now charges a small sum for this but it all goes to support the excellent work she is doing in the b12 field. Have a look at her site.
Hidden mentions being diagnosed with ME/CFS in her post.
I was also diagnosed with ME/CFS and Fibromyalgia.
It seems quite common for people to be misdiagnosed with ME/CFS or Fibromyalgia when it's really B12 deficiency.
I suspect a high percentage of people on this forum have diagnoses of ME/CFS, PVS (Post viral fatigue), Fibromyalgia somewhere in their medical history.
Be aware that GPs may diagnose ME/CFS in someone with PA or other cause of B12 deficiency.
I'm am very cynical after some difficult experiences with health professionals and I suspect that once labelled with ME/CFS some GPs think the diagnosis box is ticked and they don't need to consider other causes of symptoms. This happened to me and I had to be extremely persistent and when that failed I moved GP surgeries more than once.
NICE guidelines on ME/CFS suggest that a person should not be diagnosed with ME/CFS unless all other possibilities for symptoms have been excluded.
Unfortunately current NICE guidelines on ME/CFS seem to discourage GPs from testing B12 levels.
NICE guidelines on ME/CFS are currently being reviewed and I think Martyn Hooper, chair of PAS (Pernicious Anaemia Society) has had some input into them so hopefully in future anyone with suspected ME/CFS will at least have B12 levels checked....although that doesn't help people like me who had B12 deficiency symptoms with normal range results.
Martyn Hooper and PAS have also had input into starting process for NICE guidelines on PA.
"I r only complained a few times of symptoms linked to Nureo B12 def."
Probably worth putting a list of all your neuro symptoms in any letter to GP and may be worth drawing GPs attention in any letter to the risk of permanent neuro damage including problems with spinal cord in people who are untreated or under treated for B12 deficiency.
See Symptoms lists in one of my other replies.
"My gp started me on 5mg folic acid "
I hope your GP is aware that treating folate deficiency without treating a co-existing B12 deficiency has been associated with neurological issues in some patients.
I have 3 kids too and I was v ill last year. It isn't good not being able to parent properly. And the cognitive issues are awful when trying to heal yourself
But you can get better. It will take a bit of time.
I now have injections every other day. My husband does them for me. I'm back at work and even exercising, sometimes!
We get needles etc from medisave and B12 from apohealth.de
Being hypothyroid you may want to try the auto immune protocol diet; plenty of meat and fish and veg and avoiding grains
Build in time to rest and relax as much as you can as stress is really not going to help you get better. And sunshine once it gets a bit warmer.
Magnesium is another good one. It can help you sleep and helps with leg pain. I take 400 mg magnesium glycinate every day. It works with vit D and calcium.
Do you take any other B vitamins? A B complex can help your body use the B12 and folate. B1 and B6 also needed for nerves. May be one to try
You may also need to trial a different folate. If 5 mg of folic acid hasn't raised your levels then maybe you can't convert it and need methylfolate (but try a small dose of that first as some people are sensitive to it) or just plenty of leafy greens, chickpeas, etc
Hope you can get started on the B12 treatment soon
Each CCG/Health Board/NHS Hospital Trust in UK will have its own local guidelines on treatment/diagnosis of B12
I suggest you track down the guidelines on treatment/diagnosis of B12 deficiency for your area of UK and compare them with BSH,NICE CKS and BNF links above .
Some areas of UK have guidelines that can be unhelpful. See blog post below.
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test but sadly some doctors may be unaware that it is possible to have Antibody Negative Pernicious Anaemia.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment in book is out of date. See BNF link in this reply.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Copies of above books may be available from local library services.
Vital to get adequate treatment or there is an increased risk of permanent neurological damage including problems with spinal cord.
May be worth drawing your doctor's attention to this possibility in any letter or conversation as it may concentrate their mind...
Has your GP/doctor got a list of all of your symptoms especially any neuro symptoms and symptoms affecting your spinal area? See links to symptoms lists up page.
If neuro symptoms present, has your doctor
1) referred you to a neurologist?
2) referred you to a haematologist?
3) if gut symptoms present, referred you to a gastro enterologist?
Some UK forum members who cannot get treatment from NHS or whose level of NHS treatment is not enough to keep symptoms at bay, resort to self treatment using B12 ampoules sourced from Europe and some use private GPs and other sources such as beauty salons.
I feel that self injection is an absolute last resort but some on here feel there is no other option.
There are posts on this forum from people who treat themselves.There may be legal and ethical issues involved.
I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites etc
Hi I just got off the phone to Gp, I mentioned all links and nice guidelines about B12, treatment and Nureo problems. He completely dismissed me, said my last bloods was 243 which is perfectly in range. And I will not be allowed another injection when it’s due until I have had another blood test for B12, only if that is not in range will I be allowed a injection. I explained I’ve had these for 17 years and need them. He stated clearly you don’t if your B12 is in range, so we will miss this injection due this month and then test your levels. 6 weeks after. If they come back low you can have a injection. 😢
"Hi I just got off the phone to Gp, I mentioned all links and nice guidelines about B12, treatment and Nureo problems. He completely dismissed me"
Sadly there have been too many stories on this forum in the years I've been active on it about dismissive GPs (and sometimes dismissive specialist doctors).
I recommend that you put any queries about treatment/diagnosis into a brief as possible letter to GP and possibly copied to practice manager.
More about writing letters below.
Link below is about writing to GP if under treated for B12 deficiency with neuro symptoms.
Link has letter templates that people can base their own letters on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received by GPs may be important if there is a need for a formal complaint about treatment.
I included a request in letters to GP that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists but keep them short.
Keep copies of any letters sent or received.
Think about joining and talking to PAS who can offer support and info about PA.
It is hard to be assertive and ask questions when your brain feels like it is full of cotton wool and your body is not behaving itself and you have so many symptoms, doctors think you are making it up.
Do you have a supportive friend or family member who has read about B12 deficiency who could support you in your fight to get treatment?
PAS has some local support groups. No face to face meetings during pandemic but it's possible that some of the support groups might have online meetings.
I could not get treatment from the GPs I was with when my symptoms were at their worst and I deteriorated to the point of dementia type symptoms and had symptoms affecting my spine. I feel I lost nearly 20 years of my life and can't bear to think of anyone going through a similar experience.
I count myself lucky to have avoided SACD, sub acute combined degeneration of the spinal cord and dementia. I do feel I have some permanent symptoms that could have been avoided if I had been treated sooner.
If all else fails some on the forum choose to self treat. I was forced to do this when all possibility of NHS treatment ended.
"He stated clearly you don’t if your B12 is in range, so we will miss this injection due this month and then test your levels. 6 weeks after. If they come back low you can have a injection"
Perhaps your GP needs to read the following articles?
Wow. My GP laughed at me when I told him that I had paid privately for B12 injections and that they relieved my numbness, pins and needles, fatigue and aches. He said my B12 was fine even though I paid for a private test which showed I was right at the bottom of the range after taking oral supplements. He said it was a placebo and refused to give me any.
I ended up self injecting when the pandemic shut the private clinic I was using for injections. I had two months of weekly injections and then maybe another year and a half of monthly injections privately. When I started to self inject I did maybe 6 months of every other day. I can now manage on every 4 days but any more and my foot and fingers start to go numb again.
I no longer need naps in the day and can manage on 8 hours sleep most days compared to the 12 I needed before and still felt exhausted. I have no idea why they are so determined to keep people away from taking b12. No idea.
I am so sorry about everything you are going through with your health and frustration with your GP. Here are two articles about not retesting b12 levels and why symptoms need to be followed instead. The first look between #4 and #5. Both articles are concise and clear. And should be not remotely threatening for a doctor to take in. Sleepybunny probably already linked them for you! I am simply highlighting them for you -
Your D is low....I joined a D protocol group and raised mine to 150, are you supplementing D? I take 5000mcg (in a gelcap....pills have lots of fillers) daily + cofactors.
Have you accessed your medical records to find out if you were tested for PA in the past?
There have been forum members who were diagnosed with PA but never informed they had a PA diagnosis.
If result of Intrinsic Factor Antibody test was negative, is your GP aware that it is still possible to have PA. See BSH CObalamin and Folate Guidelines link for more info.
You could try to find out your local guidelines as this may explain why GP is not giving you the treatment you expect/need.
I have posted some of the local guidelines on the forum so may be worth searching for them on this forum.
If you can't find them you could try
1) an online search for "name of CCG/Health Board" and " guidelines B12 deficiency"
2) ask local MP for help
3) submitting a freedom of information (FOI) request to local CCG or health board asking for local guidelines on treating B12 deficiency.
4) ask GP surgery for a copy of guidelines they are using (they may not like you asking) or submit a FOI request to GP surgery.
I think Hidden has some good suggestions in her post.
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