I would just like to post my story on here and get some advice from like-minded people with more knowledge than myself.
For some context on myself, I am a 23 year old Male from the UK.
Around three weeks ago, I was diagnosed with low b12 and folic acid levels, this was off the back of symptoms such as; Heart Palpitations, Brain Fog, lack of mental clarity, pins and needs, balance / walking issues and daily constant headaches / pressure.
I believe my reading to be around 130 and I am not sure on the folic acid reading.
I was then prescribed daily 1000mg tablets of Cyano B12 and 1 daily tablet of folic acid, which I have been taking since. Initially, when taking the tablets I began to feel better and the brain fog lifted and I generally felt like I was making a way to recovery.
Then around a week later, I began to feel worse again, I started getting bad heart palpitations [ where by lying down was near enough unbearable ] and the brain fog and lack of mental clarity returned [ I just always feel weird and out of place ] .
After reading around some forums, I was switched to taking sublingual Hydroxy B12 under the tongue for the past 4 days or so and don't notice a difference.
My questions are;
-Do I have PA? I was never told off the doctor what caused / is causing my low B12 and Folate levels
-Am I on the right meds for recovery? Should I not be taking injections? If I was to take injections, would I still take the daily B12 too?
-Is the feeling of better, then worse normal? I think I'm feeling worse due to my anxiety being heightened by the B12 - but I am not sure.
Any help / advice is greatly appreciated.
Best
Jack.
Written by
Jackwalker0799
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If you have the time and energy, I suggest spending some time reading about PA and B12 deficiency as it's not always as well understood by health professionals as it should be.
I tend to post a lot of info so take at least a week to sift through it.
Some links I post may have details that could be upsetting.
I'm not medically trained.
"I was never told off the doctor what caused / is causing my low B12 and Folate levels"
If you're eating a diet that has plenty of B12 rich and folate rich foods then it's possible that there is an absorption problem in the gut.
Have you asked the GP face to face or in a letter, what they think the cause of your low b12 and low folate is?
Have you accessed your medical records to check what doctor wrote at time of diagnosis of low b12, low folate?
If GP suspects diet but you know your diet is B12 and folate rich, I suggest writing out a typical weekly diet, all food and drink, to discuss with GP.
If GP suspects an absorption issue , I would expect them to at least test you for PA (Pernicious Anaemia) and coeliac disease.
There are many possible causes of B12 deficiency. See links below.
I have also read that a pepsinogen test may be help in diagnosis of PA.
PAS website has lots of useful leaflets/articles and a page for health professionals. Some PAS members print off articles for their GPs and your GP may find it helpful to look at PAS page for health professionals.
As you're young, it's possible that your GP may not consider the possibility of PA (Pernicious Anaemia) as it's sometimes thought of as a disease that mainly affects older adults.
PA can affect babies,children, teenagers, young adults, all ages. More info on PAS website.
If I had to give just two pieces of advice, they would be
1) Always get copies of, or access to all blood test results and if you're told everything is normal/no action, check for yourself. I found abnormal and borderline results after being told everything was normal.
2) Track down the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board and compare them with BNF, BSH and NICE CKS links below.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(over 40 pages).
"prescribed daily 1000mg tablets of Cyano B12 and 1 daily tablet of folic acid"
You mention both low b12 and low folate.
Vital that both deficiencies are treated, with B12 treatment started first.
Treating folate deficiency without treating B12 deficiency may lead to neurological problems.
I'm not medically trained but am concerned about whether oral B12 treatment will be enough for you if there's an absorption problem.
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
CCGs (Clinical Commissioning Groups) in England were replaced by ICBs (Integrated Care Boards) on July 1st 2022. It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced.
Each ICB/Health Board in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
To find your local B12 deficiency guidelines
1) Try a search of forum posts using terms "local guidelines"
2) Try an internet search using "name of ICB/CCG/Health Board B12 deficiency guidelines"
3) Submit a FOI (Freedom of Information) request to ICB/Health Board asking for a link to or a copy of their local B12 deficiency guidelines.
Read blog post below if you want to know why I urge UK forum members to find out what's in their local guidelines.
It's about the guidelines in Gloucestershire and I must admit that when you mentioned you were being treated with 1000mg oral cyanocobalamin, I thought I hope you're not in Gloucestershire.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper.
Martyn Hooper is the chair of PAS. UK BNF treatment info in book is out of date. See BNF hydroxocobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Strangely, Sleepybunny , I have a copy of an excerpt from an old book here, regarding Pernicious Anaemia, as it was then understood:
" Etiology. - ..... It occurs in males more than females (proportion about two to one), and usually between the ages of twenty-five to forty years..... "
Wheeler and Jack's Handbook of Medicine (Jan 1932).
(This of course may simply be because men of an age to be of use in National Service were given thorough medicals, but interesting statistics nonetheless. You see only what you look for after all. )
Apologies for firing so much information at you, maybe read a bit each day for a week or so.
I suffered for years from unrecognised B12 deficiency and want forum members to have the info they need to fight ignorance.
"off the back of symptoms such as; Heart Palpitations, Brain Fog, lack of mental clarity, pins and needs, balance / walking issues and daily constant headaches / pressure."
Does your GP have a full list of all your symptoms, especially every neurological symptom and definitely any symptoms affecting your spinal area?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
If GP is not keen to refer, you could ask them to write to a local haematologist asking for advice on how to treat you. Seeing or having contact with a specialist is no guarantee of better treatment as they can also lack understanding of B12 deficiency.
Any chance of internal parasites eg fish tapeworm?
Do you eat raw/uncooked fish eg sushi/smoked salmon etc.
Have you lived or worked in an area where internal parasites are common?
One sign of a potential internal parasite infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found in Full Blood Count results.
Some on this forum manage their PA or B12 deficiency from other causes with high dose oral tablets but some including me report that oral treatment is ineffective.
The evidence that oral treatment is as effective as B12 injections to my mind is not convincing. There needs to be a lot more research in my opinion.
Note on oral treatment - from B12 Institute Netherlands
(Units, ref ranges, treatment patterns may vary from UK)
I started off with 1000mg tablets and initially felt much better. But I didn't start getting back to 'normal' until I started taking very high doses of B12 diluted in water.
The problem is that the reserves of B12 stored in your liver have got dangerously low. Your body, for whatever reason, appears to have a broken mechanism for extracting B12 from your food.
When this happens your body can only obtain B12 via passive absorption. Which is basically osmosis and is very inefficient and slow. Your body isn't able to extract enough B12 from the tablets before they pass through your gut. Which why I find that diluting 5000mg sublingual liquid in water and drinking it throughout the day works for me. But I take at least 15000mg everyday. I think you should try this. It isn't guaranteed. Everyones body is different and some people have to have injections.
-Do I have PA? I was never told off the doctor what caused / is causing my low B12 and Folate levels
Are yiu a vegetarian or vegan? Do you have any gut related conditions or symptoms? Any family history of PA?
-Am I on the right meds for recovery? Should I not be taking injections? If I was to take injections, would I still take the daily B12 too?
It doesn't sound like it. If your levels showed as deficient you should've been prescribed at least 6 injections. And 130 is low by most standards. Why didn't the Dr offer injections as per NICe and NHS guidelines?
-Is the feeling of better, then worse normal? I think I'm feeling worse due to my anxiety being heightened by the B12 - but I am not sure.
Yes its very common. But its usually based on a theory of 'reversing out' i.e. your symptoms are flaring up and repairing in the reverse order they started.
What you've described is different. And its likely because your levels are not gettint up high enough quickly enough.
You really do need injections asap. Can you go back to the GP to explain and tell them you're getting worse and think you need injections?
GPs are generally hopeless with B12. Shocking and sad to realise but its true. You must assume they're doing it wrong and push them for injections
I am going to ring my surgery on Tuesday and ask for an appointment with a GP regarding my B12, as I feel to have just been thrown tablets and given no substance or guidance [shock horror NHS being poor]
What am I best to ask? Here is my current plan:
- Ask for copies of my blood test [which indicated the b12 deficiency]
-Ask why I am not on a loading dose of B12 via injections
-Ask for a test to see if I suffer from PA
Any else I should ask for? If the doctor does not agree to put me on injections, I know someone who does them local to me for £10 a shot, I will simply pay for them myself, I am not bothered about the price, as they say, you cannot put a price on your health.
Thanks once again Pickle, really really appreciate your help.
Sure, you can easily call up the surgery and ask if they could please send you a copy of your blood test results by email.
Once you have them you could make an appointment with the GP to ask why you haven't been put in injections and state that you don't know why you would have B12 deficiency as you have a varied and meat based diet.
You are quite young for PA so it could be a gut issue like coeliac disease, but either way you'd like them to investigate why you're deficient. And can they please run an IFAB (intrinsic factor Antibodies) test to check for PA.
Great - £10 is cheap for private injections, quite a bargain compared to others. Make sure to ask if they can do every other day for you as you want the levels up quickly.
Great to hear, well done. I would continue with 1 a week if you can.
Did you have a folic acid deficiency? You should generally start your B12 injections before you start folic acid too. And I would only take 5mg with a proven deficiency, otherwise you could head into trouble and not benefit from the B12.
Thanks Pickle, I just remembered, I call recorded my conversation with the doctors [ I have had bad experiences in the past ]
Going back through the call, he says I am low in B12 reading is 130.
He also says that my folic acid, folate, is low. Usual reading is between 3.14, but after this, I cannot hear what he says I am, as I am breathing over what he says.
So it is clear that I am below 3.14 on my folate, would you still take the daily 5mg of Folic Acid on this basis?
As others mention, upping frequency of B12 injections is the main thing. There are some other things that you can look into that may help smooth the treatment process somewhat, they are described in my treatment (supplementation) guide here: healthunlocked.com/pasoc/po...
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