Brain Fog

[Itchyislander]

How do you deal with Brain Fog? After my initial loading jabs my brain fog disappeared and I was back to being able to think, spell, read etc. I've since had a top up (two weeks ago) and its coming aback. I cant read whole paragraphs without skipping words, I will replace words with others that sound similar. Its a bit like a migraine without any of the other symptoms (headache, numbness etc). My job means I need to be able to do all of the above and think coherently- I am self employed so no time off sick for me! My next B12 boost is in May, can I buy/ take any supplements that may help?

[wedgewood]

I find that I have to self-inject to keep the symptoms at bay , as 12 weeks apart is no use to me . I read on here that some members find B12 mouth or nose sprays help , or sublingual lozenges . But I have to say they don’t help me one iota . You can buy the B12 sprays and sub-lingual lozenges on Amazon I believe . May be they would work for you . You could also try getting your GP to let you have the injections more regularly ( can prove difficult ) If none of the above help you , come back here to find out how to self inject and where to get the necessary . Injections are very cheap and easy .

[Itchyislander in reply to wedgewood]

Thank you. My PA test came back negative (although I know it's not that reliable) My last blood test (3 months after loading) came back as being within normal range. I will try the supplements you have mentioned and hope they help. I doubt that convincing my Doctor for another test for PA or additional injections will be at all easy considering it took 4 doctors appointments before they gave me an initial blood test for b12 and instead sent me home with an £8 bottle of medicated shampoo!

[wedgewood in reply to Itchyislander]

Yes , once you have started injections your B12 results will not be low . In fact your GP should know that testing is useless once injections have begun . But your SYMPTOMS should be treated not your blood test results . There are beauty clinics which will give you B12 injections as long as they don’t claim medical advantages .( they actually claim weight loss benefits ! -nonsense of course ) I think they are quite costly .

[Itchyislander in reply to wedgewood]

I am on the Isle of Wight so unlikely to find one here! I have a paramedic friend and a few retired nurses in my family so if I wimp out I could ask them!

[wedgewood in reply to Itchyislander]

Yes if you fail to get any extra injections from your GP , and the sprays and sub-lingual logenges are no good for you , come back here and we will tell you how to get B12 ampoules from German online pharmacies , needles , syringes etc from UK suppliers . Nurses could show you how to inject ( I use alternate thighs ) You do not have to suffer the return of symptoms for lack of a cheap injection . Best wishes .

[Itchyislander in reply to wedgewood]

Thank you

[Dragonwalker in reply to Itchyislander]

I have a nurse friend who is going to do my first one with me. Generally, they don’t like being asked. 😟

[JanD236]

Self injection was the way forward for me too. I remember being on a fairly low key training course at work and having to do a role play making sure that I covered 3 particular points. I just could not keep 3 points in my mind at the same time. It was so frustrating!

I’m not sure I’ll ever be on Mastermind these days but I can now get to the end of a sentence and remember what I am talking about!

[pvanderaa]

Seek more frequent injections, self inject at a more frequent rate, add methyl-B12 supplements.

Take folic acid and multivitamin supplements.

Any further blood test should be at the upper limit (i.e. >1500 pg/ml) to heal the nerve damage in the brain that has lead to an psychological symptoms and the brain fog.

[waveylines]

Completely agree with the others -you need more frequent injections. I self inject (subcutaneous) made a massive difference. Was scared at first but its really not hard. Watched u tube & a friend showed me.

The frequency that the nhs give b12 jabs is not based on any science/research....its an arbitory decision that none of the bodies can explain why?!!!

[Sleepybunny]

Hi,

"After my initial loading jabs my brain fog disappeared"

"My next B12 boost is in May"

How many initial loading doses did you have?

UK recommended treatment for B12 deficiency without neuro symptoms is.....

6 B12 loading jabs over 2 weeks then a jab every 2 or 3 months.

I'm guessing you are on above pattern of treatment.

Does your GP know that BNF (British National Formulary) guidance on B12 treatment has changed recently. They coudl be using a BNF book that has not been updated. It used to say every 3 months for those without neuro symptoms, it now says every 2 or 3 months.

pernicious-anaemia-society....

BNF

bnf.nice.org.uk/drug/hydrox...

UK recommended treatment for B12 deficiency WITH neuro symptoms is...

A B12 jab every other day for as long as symptoms continue to get better then a jab every 2 months.

Do you have or did you have any neuro symptoms eg tingling, pins and needles, numbness, tinnitus, tremors, twitching, brainfog, migraine, restless legs, memory problems, balance problems, word finding difficulties?

B12 deficiency can lead to many other neuro symptoms besides ones I have mentioned.

If yes to neuro symptoms then my understanding of UK B12 guidelines (I'm not medically trained) is that you should be on second pattern of treatment.

A B12 jab every other day for as long as symptoms continue to get better then a jab every 2 months.

Link about writing letters to GP if under treated for b12 deficiency WITH neuro symptoms

b12deficiency.info/b12-writ...

Untreated or under treated B12 deficiency can increase possibility of permanent neurological damage including spinal problems.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines diagnostic process for PA and Antibody Negative PA.

"My PA test came back negative "

Does your GP know it is possible to have Antibody Negative PA?

BMJ B12 article

bmj.com/content/349/bmj.g5226

NICE CKS

cks.nice.org.uk/anaemia-b12...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you been tested for Coeliac disease?

NICE guidelines Coeliac disease suggest testing anyone who is B12, folate or iron deficient.

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Tested for H Pylori infection?

patient.info/health/dyspeps...

Any chance of internal parasites?

Fish tapeworm and Giardia lamblia are two I have read can lead to B12 deficiency.

Any exposure to Nitrous Oxide?

gov.uk/drug-safety-update/n...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

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). Book is up to date with UK b12 guidelines.

"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

More b12 info in pinned posts on this forum.

[Jet72]

I was the same a year ago when diagnosed. Improved on b12 loading doses... Then went back to having brain fog. Someone mentioned folic acid. My GP said my folate was fine but in fact it was very low end of fine. So I took it every day for a few months and I'm fine now. Back to normal. You need a decent folate level to absorb b12 apparently. I honestly didn't think it would make a difference but it did.

[fbirder in reply to Jet72]

Folate isn't needed to absorb B12. But it is needed to make the body work properly. It is involved with lots of processes and is vital for the production and functioning of DNA. So it's a good idea to keep your levels OK.

[Baggy8]

Your cognitive issues clearly show you have neurological symptoms and haven’t been treated according to guidelines, i.e. every other day until there is no further improvement. Can SO relate to your story, my cognitive problems cost me very dear.. Don’t wait too long trying to get your GP to treat you properly, they usually just don’t have the training and knowledge. I’d suggest taking control of your own health and self inject. I found it useful to journal my symptoms, when I SI and the return of symptoms etc. You then get a very clear picture of when you need your injections.

[Deetha]

You can buy B12 from Versandepo but the whole website is now in German but you can sort of navigate by using Google translator. I registered when it was still all English and used PayPal so it now it remembers me and I am familiar with some of the key words and boxes😂. They are a reliable supplier and very quick. For the needles etc I use Medisave as they are also reliable and good value for money. I currently am stockpiling B12 and receive regular discounts from them. I inject IM which suits me and use Hydroxocobalamin. Also don’t let the gps fob you off with saying your levels are normal when you’ve been following their injection routine...of course it will be “normal” as you are receiving replacement therapy but they just mean that is within the range as set by the hospital but are not necessarily listening to the symptoms that you are presenting - my gp surgery tried that with me and I gave them short shrift!! And made a complaint!

I inject every week as I find this suits me but you have to find what works for you and it is really trial by symptoms 👌🏻. I also plot my blood tests as I have hypothyroidism which is very good at presenting some of the key symptoms when under treated that you experience with b12 deficiency such as fatigue, brain fog, memory issues, lethargy etc.

[Deetha]

I learnt how to inject from watching the nurse give me them and then from internet and You Tube 🎂