Hi I’m new here and just looking for advice. 12 years ago I was diagnosed with b12 deficiency with a level of 52 ng/l. At the time my symptoms were brain fog, fatigue, poor memory. My doctor said the b12 wasn’t causing my symptoms because I wasn’t anemic. He said I didn’t need injections and gave me pills to take. I did a bit of research on my own and decided to take high dose sublinguals as well as folate. This brought up my levels and the doctor deemed me as cured.
He also did a test of intrinsic factor at the time which was negative.
I do think the sublinguals helped but most of the symptoms remained. I’m always tired, my memory is horrible, I have terrible brain fog, my muscles burn constantly, I have pins and needles in my hands and feet.
I’m wondering if these symptoms could be being caused by b12? I still supplement so whenever I have blood tests my levels are always high.
I’ve read that even if your levels are high, that doesn’t mean your body is using the b12 and some people need injections to heal. Is there any truth to that?
I just don’t know what to do. I feel horrible all the time but my blood work is always normal so the doc isn’t much help. I just want to feel better.
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The reason I am asking is that patterns of treatment,type of B12 used and reference ranges and units for tests can vary from country to country.
I'm in the UK, so some of the links I include may have info specific to UK.
There are many possible causes of b12 deficiency eg diet, PA (Pernicious Anaemia), Coeliac disease, internal parasites eg fish tapeworm, some medicines/drugs, damage to terminal ileum(part of gut where B12 is absorbed) plus others.
What did your doctor think caused your original low B12 result?
In UK, each CCG (Clinical Commmisioning Group) or Health Board is likely to have its own local guidelines on treatment/management of B12 deficiency. If you are UK based, I suggest you track down the local guidelines for your area and compare them with BSH,BN, NICE CKS links.
Support in other countries
The link below includes links to support groups in other countries.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"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 (US authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries
Some on this forum also have thyroid issues. UK GPs often only order TSH test which won't give a full picture of thryoid function. Suggest you put any thyroid results on Thyroid UK forum on HU.
"I’ve read that even if your levels are high, that doesn’t mean your body is using the b12"
I suggest you research "Functional B12 deficiency" which is when there is plenty of b12 in the blood but it's not getting to where it's needed in the cells.
Thank you for your reply. I’m from Scotland. No reason was ever given as to why I was deficient. I’ve had ibs since I was about 10 so I wonder if that has anything to do with it.
"12 years ago I was diagnosed with b12 deficiency with a level of 52 ng/l. At the time my symptoms were brain fog, fatigue, poor memory."
"He said I didn’t need injections and gave me pills to take"
My understanding is that you should have been put on the following pattern of treatment at the time as you had neurological symptoms. See BNF link.
A B12 loading injection every other day for as long as symptoms continue to improve then an injection every 2 months.
The pattern for those without neuro symptoms at that time was
6 B12 loading injections over 2 weeks followed by an injection every 3 months
This was changed a couple of years ago to
6 B12 loading injections over 2 weeks followed by an injection every 3 months
Sadly UK GPs sometimes have misconceptions about B12 deficiency and one of the common misconceptions is that anaemia has to be present for someone to be diagnosed with B12 deficiency.
Another common misconception is that macrocytosis (enlarged red blood cells) has to be present.
I suggest you get copies of and access to your medical records, maybe even a complete set of your medical notes.
Best bit of advice I ever got was to always get copies of all my blood test results. I was told everything was fine/no action and then when I got copies I found abnormal and borderline results.
There is also a thyroid support group that meets in Kilmarnock area which also welcomes those with PA/B12 deficiency. Again no meetings during pandemic.
I don't know what the equivalent of NHSE is in Scotland.
I think your best bets are probably
1) Talk to PAS and also read info on B12 Deficiency info website.
2) Put any concerns about treatment/diagnosis into a brief, polite letter to GP and maybe copied to practice manager.
Letters could contain symptoms list, test results, current treatment, relevant family and personal medical history eg are there other relatives with B12 deficiency/PA/Coeliac etc/auto immune conditions, extracts from UK B12 documents, requests for referrals eg neurologist, haematologist, gastro enterologist.
Keep any letters short and to the point but polite. Keep copies of any sent or received.
In UK,my understanding is that letters to GPs are supposed to be filed with medical notes. Letters are also useful in providing a paper trail in case of a need for formal complaint in future. They are evidence that an issue was raised.
Symptoms Diary
Do you keep a daily diary tracking changes in symptoms over time and if and when treatment is received? Can be useful evidence of improvement or deterioration to show GP/specialist.
I am surprised you were not referred to a neurologist years ago when first diagnosed as you had neuro symptoms and that the GP did not seek advice from a haematologist.
A gastro enterologist should be able to spot signs of gut damage from PA, Coeliac and other gut conditions.
Perhaps it is worth making referral requests now?
Time is of the essence in treatment of B12 deficiency.
I tried to speak to my doctor this morning but it was like talking to a brick wall. I tried to explain to him that just because my levels are high due to supplementing doesn’t mean my body is absorbing the b12 but he said that’s absolute nonsense. He also said if I had a deficiency I’d be anaemic but my red blood cells are normal so I’m definitely not deficient. He said all my blood work is normal so no further tests are required.
Hallo, listen to what Sleepybunny is writing. You have to self inject, because you have neuro problems, 3 times a week. I was just like you, my b12 was 50 pmol/l and i could not walk alone. It was 5 years ago. Now i am playing tennis on court, but i have more than 600 shots with b12 !
"I tried to speak to my doctor this morning but it was like talking to a brick wall"
I'd urge you to think about writing a letter to GP and maybe also sending a copy to practice manager as well, rather than speaking over the phone or face to face.
1) I think it's much harder for a GP to ignore what is said in a letter because my understanding is that in UK letters to GPs are supposed to be filed with a person's medical notes. To make sure my letters were filed with my notes, I always included a sentence in letter that requested a copy was filed.
If you're not sure what to say, have a look at the letter writing link in my other reply. It has letter templates that people can base their own letters on.
2) Writing a letter avoids face to face confrontation with GP and gives you time to plan out what you want to say and ask for.
In the end when I had exhausted all possibilities of getting NHS treatment and had got to the point of dementia type symptoms and symptoms that affected my spine, I chose to self treat.
Change GPs?
I tried really hard to get treatment over a number of years and stupidly stayed far to long with a GP surgery that didn't listen and treated me unkindly.
I count myself lucky to have avoided SACD, sub acute combined degeneration of the spinal cord and dementia. However I do appear to have some permanent symptoms which I believe are due to many years without treatment.
My personal experience is that GPs and specialists can be ill informed about B12 deficiency . They get very little in their training about vitamin B12 deficiency.
However ignorance from lack of info in training should not be an excuse for refusing to treat people with clear signs of B12 deficiency.
A good GP should be willing to keep learning and keep up to date with relevant guidelines eg BSH Cobalamin and Folate Guidelines.
These days if someone spouted a load of rubbish about B12 deficiency I'd have the info to hand to refute what they said.
B12, Folate and Ferritin and other Iron tests and Full Blood Count
Have you got results for the above tests preferably from more than one occasion?
Perhaps you can include them on this thread or start a new thread with them (include a link to this thread). Take care to remove any details that might identify you or your GP/GP surgery for privacy reasons.
There can be clues on Full Blood Count as to whether iron, B12 and folate deficiency are possibilities. Look at the links about blood tests, macrocytosis, blood film, full blood count in my other replies.
"He also said if I had a deficiency I’d be anaemic but my red blood cells are normal so I’m definitely not deficient."
Your GP appears to be under the misunderstanding that people can only be diagnosed with B12 deficiency if they have enlarged red blood cells. The term for having enlarged red blood cells is macrocytosis.
Only about half of those with B12 deficiency have macrocytosis.
If your folate levels are good to high then this could mask a B12 deficiency. Low folate can also lead to macrocytosis. Higher levels of folate could lead to the red blood cells returning to normal size but there might still be B12 deficiency.
If your iron levels are low this could also mask a B12 deficiency ( and/ or a folate deficiency).
B12 (and folate deficiency) can lead to enlarged red blood cells (macrocytosis).
Iron deficiency can lead to smaller red blood cells (microcytosis).
If you have both B12 (or folate) deficiency and iron deficiency at the same time it's possible that when the Full Blood Count is done, your red blood cells might seem to be normal size.
Have a look at the following links/info as should give you some info to refute what GP has said.
1) In fifth pinned post on this forum, the last link in the list has useful quotes from mainly UK B12 documents.
The fifth recommendation in the above summary suggests that if a patient has the symptoms of b12 deficiency even if this is not clear from their blood tests they should have treatment to avoid neurological damage.
Has your GP got a list of all your symptoms especially any neuro symptoms/spinal symptoms?
If you look at the link above it talks about prophylaxis of macrocytic anaemias.
Prophylaxis means treatment given to prevent disease.
What this means in my opinon is that BNF says B12 treatment should be given to prevent macrocytic anaemia.
It's possible that your GP has misunderstood the meaning of prophylaxis and has interpreted what is in BNF to mean that B12 treatment should only be given to those with macrocytosis.
I used to include quotes from relevant UK documents/articles in letters I wrote. Perhaps you could include quotes from BNF and BSH links?
Have you managed to track down the local guidelines on b12 deficiency for your Health Board?
Came across articles about proposals for a single national formulary for Scotland but not sure if this has happened yet.
A formulary is a book (or online source) that gives guidance on what drugs/medicines can be prescribed for various health conditions. My understanding is that currently BNF (British National Formulary) is used in Scotland.
I think regional health boards may have their own formularies but trying to find out.
Thank you so much for your help. I’m going to try to go through everything you’ve said and try to understand it. It’s not easy with all this brain fog.
I do have copies of all my blood tests going back to 2004 that I can post. I’ll try to do that now.
Like many others with PA - I've not had the easiest of roads to travel. (My B12 was '7')
When I eventually got a 'good' doctor/hospital - Things radically improved.
I know that not everyone has the ability to travel into London (especially now!), but wanted to say that I went to 'The Royal London Hospital for Integrated Medicine'.
A great doctor listened and it was apparent that I needed injections on a monthly basis.
Local GPs in my opinion are fine for ears, nose and throats - But going to a specialist was infinitely better.
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