Hello. As part of my b12 deficiency I have bad cognitive issues. This has had a real impact on my work. I run an architectural practice with my husband. I have made it clear to my husband I am not comfortable doing any more projects as my brain no longer works in the way it used to and I cant think through the processes of building design. He has been getting really frustrated with me because he doesn't understand how my brain can change because of a "vitamin deficiency". I need to stop work because I am worried I will make a big mistake and I have asked he finish my remaining projects.
Can anyone point me in the direction of a book or website that will explain the effects of b12 of brain function? Until he hears it elsewhere I am just going to go around in circles.
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I have written a very detailed reply on another forum thread with links to b12 books, b12 websites, UK B12 documents/articles and other B12 info. I suggest you have a look.
Hopefully there will be something in it that is helpful.
How often are you getting B12 injections?
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
Cognitive issues would usually be considered to be a neurological problem so I would expect you to be on the second treatment pattern above if you're in UK.
I included info about neurological symptoms in the detailed reply I linked to at top of this post.
There is also B12 info in the pinned posts on this forum.
Are you a member of the Pernicious Anaemia Society?
Thank you. I don't have (I don't think) PA. Doctors don't seem to find the need to investigate the why! I have got an appointment next week to discuss increasing jabs from 3 months to 2 months.
If your diet has plenty of B12 rich foods, I think your GPs should be considering possibility of an absorption problem in gut eg PA, Coeliac, H Pylori infection etc.
There are other possible causes of B12 deficiency including exposure to nitrous oxide and some parasitic infections eg fish tapeworm.
I think it's useful to know what the cause is as some causes of b12 deficiency may be temporary eg if Coeliac disease is diagnosed early enough, sticking to a gluten free diet may mean gut heals enough for B12 absorption from gut to improve.
Some parts of UK are using local guidelines for treatment/diagnosis of B12 deficiency which are years out of date. I suggest tracking down the local guidelines for your area and comparing them with national guidelines/articles eg BNF, BSH , NICE CKS just in case you're in an area with out of date guidelines.
"I have got an appointment next week to discuss increasing jabs from 3 months to 2 months"
I suggest you have a look at Point 5 in link below. It's about writing a letter to GP if under treated for B12 deficiency with neuro symptoms.
Has GP got a list of all your symptoms especially any neurological symptoms? Might be worth including a symptoms list in any letter you write to GP.
It may be worth discussing with GP whether you need to restart loading doses. The pattern of loading doses for those with neuro symptoms is much more intensive than the loading dose pattern for those without (see my first post).
GP can find the info they need in their BNF (British National Formulary) book Chapter 9 Section 1.2
Might be worth having a copy of BNF online info with you when you next see GP. See BNF link up page.
If neuro symptoms are present, have you been referred to
1) a neurologist
2) a haematologist ( see NICE CKS link up page)
If neuro symptoms present and GP is reluctant to consider increasing jabs to every 2 months. may be worth discussing the potential consequences of under treatment. See links below.
If gut symptoms present, have you been referred to a gastro enterologist? Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori etc.
"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 does not show updated BNF info.
"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".
I also plan to read "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Some of these books may be available from your local library service.
More about blood tests
Link about "What to do next" if B12 deficiency suspected
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
I made an account just to answer this question. I'm a current medical student and I learned about this in my pathology class.
The reasoning behind neural issues is due to the accumulation of Methylmalonic acid. Vitamin B12 is required for the conversion of Methylmalonic acid to Succinyl CoA; Succinyl CoA is required for lipid metabolism in the brain. The brain uses lipids (fats) in many crucial processes.
Side note, a B12 deficiency can also manifest cardiovascular issues such as thrombosis and atherosclerosis. Vitamin B12 transfers a methyl group (CH4) to homocysteine to be converted to methionine. Accumulation of homocysteine can lead to the CV manifestations.
There are many causes of B12 deficiency (aka Pernicious Anemia), however, it is RARELY due to a dietary deficiency of it, since the body does a good job in storing it. The most common causes that I learned are pancreatic issues, issues with your parietal cells in your stomach (releases intrinsic factor, which is required for B12 absorption), and damage to the terminal ileum (where B12 is absorbed).
You do not mention vegetarian and particularly vegan diets - a timely reminder given the Veganuary craze at the moment. I have a virtually vegan diet with insufficient b12 in the dairy and eggs that I eat and my deficiency was accelerated through my doctor putting me on Omaprezole which I was prescribed for over six years.
It's good to hear that you are learning about B12 deficiency and PA in your studies.
"There are many causes of B12 deficiency (aka Pernicious Anemia)"
My understanding is that the term "Pernicious Anaemia" applies to a specific auto immune condition, also known as Biermer's Disease and Autoimmune Metaplastic Atrophic Gastritis, rather than it being a general term for B12 deficiency.
Article from PAS website
What’s the Difference between Vitamin B12 Deficiency and Pernicious Anaemia?
Without a shadow of a doubt, P.P.I. medications can lead to B12 deficiency , as they annihilate stomach acid when taken over a long period . Also as we age , we produce less stomach acid , which can lead to acid reflux (oesophageal sphincter doesn’t close properly when stomach acid is of low concentration ) And then PPIs are prescribed !Terrible !
And yes , the current promotion of veganism ( nothing wrong with that ) leads to B12 deficiency if there is no instruction to supplement with B12 .
Good luck with your studies , and thank you very much for your input . It’s good to know the science about B12 . I’m now hopeful that the present medical training will give greater attention to P.A, /B12 deficiency , as most GPs/ consultants at the moment , have very poor knowledge of it , and it is often either not diagnosed at all or mis-diagnosed .
I read the book Could It Be B12? and it was helpful, but mostly responding to say how scary and frustrating it is to go through this. I went through something similar and didn't know what was happening for a while. It was terribly disconcerting. I was very relieved to get my mental clarity back. I hope that you do too, and soon!
The chairman of our society, Martyn Hooper , has written a book on Pernicious Anaemia and B12 deficiency ( obtainable from Amazon .co.uk ) I’m sure that would be useful reading for you and your husband . Just search using his name , and his books will come up .,
You think that you don’t have PA ,but the test used — Intrinsic Factor Antibody Test, is very unreliable if it comes up negative - about 50 % unreliable . So symptoms are the most important indicators .
I had to take over my own treatment when I could only get an injection every 3 months ( I had proven P.A. ) My symptoms returned after a week or so . My GP indicated that I was imagining things , and refused any extra injections . I self-inject weekly now , and my symptoms have disappeared , except that my numb feet are now just burning feet , which I’ve got used to after 4 years .
I do hope that you find a solution . It’s terrible not to be believed and understood . But P.A. / B12 deficiency is not well understood by the medical profession . Best wishes .
I found my cognitive issues improved after I started injection 3 times per week. Once weekly was not doing it as after 4 days I felt as though I hadn’t received an injection at all. That was 2 years ago and I’m still injecting 2-3 times per week. I can’t inject less than that as I get a return of symptoms. I would consider injecting more frequently until you notice no improvement. Then cut back. Hoping you feel better soon!
I totally 100% understand your worry. I have been a nurse for 30 years and no longer work because of PA. My brain issues worry me the most because I also worry about Alzheimers! My brain just isn’t sharp like it used to be. That and my eyesight being awful doesn’t help. The thing is I’m quite sure this causes some level of depression because what you do and what you are forms your identity as a person. Good luck getting sorted and I hope you feel better. Best way forward is to source your own supply but keep getting b12 through GP as well.
My initial symptoms prior to diagnosis was loss of short term memory and nominal aphasia after five years of injections both are back to near normal. The b12 deficiency website lists all the cognitive difficulties that b12d costs and if you enter b12d in relation to brain functions you’ll get lots of information. Do not blame your husbands ignorance as many doctors are equally ignorant of b12d - they only conceive of pernicious anemia and, in some cases, they take patients down totally irrelevant medical paths chasing much more complex causes of the symptoms caused by b12d.
I hope you are getting the injections that you need.
I understand your concerns. I think it important that you get to the cause of your B12 deficiency problem if you can, and get a frequency of injection that will improve your cognitive ability. Don't try to force your brain to do more than it can cope with. Anxiety can also be an issue, which of course does not help you function. You need to take it easy and you need support.
Even now, I do not always grasp complex technical drawing issues, although I taught them for many years. I have returned to work after a gap of 15 months, but in a part-time capacity and with less responsibility. However, I'm still expected to teach technical drawing - and although improved, I cannot guarantee a "good day" when it counts. Concentration and memory certainly affected. Not sure Ofsted would understand !
If you look at the Pernicious Anaemia Society website, you will find a poster listing a few of these problems: "Teachers' and Lecturers' Information Sheet." Just a page.
This might help your husband to see you more clearly.
Vitamin B12 deficiency: I'd never heard of it at all, let alone realised what might be affected. Until I had it myself.
If you have not yet had the following tested, please have them checked too :
Folate, ferritin, vitamin D. Check that none are out of range or low within range.
Thyroid check wouldn't hurt either, if not done.
Sleepybunny has suggested above to get printouts of your blood test results- such useful advice since "normal- no action" could be the decision given if in range, even if you are scraping along at the bottom of all the above !
All I would say is this , that the following are well known to be affected:
hair, skin, eyes, brain, nerves, heart, tongue, teeth, nails ........ and so therefore highly unlikely that bones would get off lightly.
I was found to have osteoporosis of the spine because of a random Dexascan, due probably to having broken both arms at shoulder on separate occasions and being over 50.
So for whatever reason, since osteoporosis seems to be a common complaint here, it's probably wiser (not to mention cheaper) to have a vitamin D blood test just to check.
I suggest putting any thyroid results you have on Thyroid UK forum on HU.
I do worry about people with cognitive issues getting a diagnosis of dementia when there may be a treatable cause of dementia type symptoms eg B12 deficiency.
I think once someone has a dementia diagnosis it might be very difficult to get doctors to consider other possibilities.
I had dementia type symptoms when I was at my worst (untreated for over 15 years) which included
1) Brainfog and confusion
2) Inability to get right words out (nominal aphasia)
3) I'd go mentally blank in the middle of a sentence
4) Mental arithmetic became hard to do (I'd always been good at maths)
5) Forgetfulness
For example, I'd go up the stairs to fetch something and when I got to the top I'd have forgotten what it was so I'd go downstairs.
After a while I'd remember what it was I wanted, go upstairs again and would forget again before I got to the top.
I'd go downstairs again...etc
Sometimes I didn't even get to top of the stairs before I forgot.
6) Strange behaviour eg keys in the fridge, boiling the kettle without any water in it
In UK, I think GPs get extra funding when they diagnose dementia and I worry this means less incentive to look for causes other than dementia for dementia type symptoms.
There are stories about people with b12 deficiency who were misdiagnosed with dementia in the books I mentioned in my second post on this thread.
Blog post to help explain B12 deficiency to family members
I'd like to point out that the letter uses the term Pernicious Anaemia when I think the writer means B12 deficiency in general.
Pernicious Anaemia is an auto immune condition which leads to b12 deficiency and there are many other causes of B12 deficiency.
"He has been getting really frustrated with me "
Perhaps he would find it helpful to read the books I mentioned or look at the websites I listed.
It might be helpful if one of you joined the PAS. They can suggest info to pass to GPs.
I felt very on my own dealing with my health issues as those close to me struggled to understand what I was going through. I wanted someone with me at each appointment to speak up on my behalf when I saw GP, neurologists and other specialists but it didn't happen.
I had some very difficult experiences with doctors which included being snapped and shouted at.
I hope you have a supportive friend or family member who'll go with you. Even better if they have read about B12 deficiency.
GPs can sometimes be kinder when there is a witness present.
I couldn't express what I wanted to say due to brainfog so sometimes I'd write a letter to GP/specialist and send it to them before or after the appointment.
Being a cynical person after some bad experiences, I also worry about age prejudice. I don't know how old you are but I think too many things are put down to ageing.
Looking back, I also think some of the lack of respect I experienced was possibly due to being female.
I think letters to GPs/specialists can be more effective because
1)In UK, letters to doctors are supposed to be filed with medical notes so are therefore less likely to be ignored in my opinion than info passed on verbally or info on photocopies. I used to include a request to place a copy of each letter with my medical notes.
2) If letter reaches doctor before appointment it gives them time to do their own research.
3) Writing a letter gives patient time to express themselves clearly; not always possible in a 10 minute appointment if you have brainfog.
4) Writing a letter provides a paper trail which can be useful if there is a need for a complaint in the future.
There will be some GPs who get irritated by receiving letters.
I have chronic pernicious anemia with permanent short term memory loss. B12 deficiency caused memory problems, vision loss, hearing loss, vertigo and neuropathy. I had to go on Disability and LTD. It does affect your memory. Im sorry you have to experience this. Look up pernicious anemia, side effects and show your husband. Have your doctor explain it to your husband. And show him this reply. Its better you step away before you ruin your career, and the business. It took me awhile to accept it myself, but its a reality. People died from chronic Anemia back in the day. Pernicious means death. Mild anemia is treatable and you recover, although memory loss is more severe. Take care of yourself! GOD bless... and remember, your not alone!!
You've had some amazing advice here, so I would just like to share my experience. I worked as psychotherapist and ran a charity, however my B12 deficiency led to the loss of my career, and the charity unfortunately. I ended up unable to complete a sentence or understand what people were talking about, the words just didnt come and certainly had no memory. I had to give up driving as would have to stop, unable to understand where I was, where I was going, if I was on the right side of the road. Couldn't read or write and couldn't walk in a straight line and constantly stumbled and knocked into things. I was desperate when i found this forum.
I've taken the advice given above, read Sleepybunny's huge list of info, it's amazing.
Today (3 years later) I am brilliant. The brain is sharp, physically I'm better and have my life and future back. It has meant struggling with doctors who genuinely know nothing about B12 deficiency - and I till don't know the cause in my case. I've come to know my body and the signs to look for, in my case a weekly jab keeps me good.
There is every chance that you will be back enjoying your work. But you need to get the information and put that into practice, which may take a little time.
5 years ago I was really suffering after 25+ years of symptoms.
I know exactly what you mean and think you are very wise to hand over your work to others at the moment.
I am a cattle farm manager by trade but I have designed and project managed several farm building projects and understand some of the complexity and importance of your work: you cannot afford to miss a small detail that has an important impact on your project, potentially making you liable.
I had to give up everything I did because I couldn't think through even the simplest of things.
You can imagine your brain as a safety net - with all your neurons for your thought processes being the threads that make it.
Because B12 is needed by every cell in your body to function properly, if you are short of it, some of the cells don't work properly.
A poorly or not functioning brain cell means that there is break in one of your thought processing sections.
These breaks cause holes in your "safety net". We can get away with odd holes by relying on the surrounding threads to still provide strength to the net - but if the deficiency carries on and you get more holes, in time the net has to be declared unsafe until it can be repaired - you don't want a problem arising because a detail can fall through a hole in your "safety net" of joined up thought processes.
I've been on daily jabs and supporting supplements for over 4 and a half years and most of my cognitive function, memory, speech, words, etc have returned so get yourself onto a much more frequent injection protocol, take supporting supplements and get yourself well again.
You should have your jabs as often as you need them to keep your symptoms at bay.
Many people benefit from a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium, iron and vitamin D, ideally from their diets to go with it.
If you need information on self injecting please see Wedgewood's past replies by going to her profile by double clicking on her name and looking under the heading "replies".
I recommend you order ampoules now, before we get to Brexit.
If you join the PAS, you can then access details of PAS support groups in UK.
You do not have to have a confirmed diagnosis of PA to join PAS, this is probably due to the fact that it takes some people years even decades to get a diagnosis of PA.
Even if your B12 deficiency is not due to PA, some of the info on PAS website is applicable to other causes of B12 deficiency.
There are currently 15 PAS support groups in UK. There may be one close to you.
They are a source of emotional support and local info such as helpful GPs/specialists in the area.
I'm sure many people benefit from talking face to face to people who understand their symptoms, experiences with doctors and the effect of B12 deficiency on people's lives and families.
I think that it might be possible to take a family member as a guest to PAS support meetings.
PAS would be able to tell you more.
Some people might find it helpful to hear other people's stories besides those of their family member.
PAS membership costs about £20 for a year's basic membership
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