I am having regular injections but my memory is terrible or things just don't seem to be registering in my head. I have been back to the doctors the 1st doctor said it was my age (which is 56) and said it had no connection to my B12 deficiency and no matter what I said it didn't make any difference. He looked at me as if I was making a fuss over nothing On my last visit I had a memory test and passed but its not that kind of memory failure. e.g my Grandson was showing me his t-shirt with a fire engine on it which said nee-naw and I just couldn't connect and had no idea what he was talking about when it is something he says all the time and whilst this may seem amusing it happens everyday and is worrying. I was knitting which I do on a regular basis and suddenly forgot how to knit for a few seconds. I do not know what to say to my doctor next. Where do I go from here?
memory loss: I am having regular... - Pernicious Anaemi...
memory loss
Hi!
It sounds like B12d brain fog and the way your Dr was dismissive almost seems like a symptom in itself - it's as if it makes us fade from being heard!
How often are your regular jabs?
Do you have any other symptoms?
Do you think you would improve with more B12?
Thank you for your reply everyone. I have B12 jabs every 12 weeks and had a blood test done 6 weeks after my loading dose which appeared to be very high but then the usual symptoms kicked back in. The memory thing is very worrying and frustrating and does not improve between jabs just seems to be getting worse.
I really sympathise with you. I have been suffering with the brain fog for a few years now. It's scary that even simple calculations feel so impossible a task especially when the fatigue hits you like a train. No matter how hard you try you just cannot focus or make sense of anything.
You say "I have been back to the doctors the 1st doctor said it was my age (which is 56) and said it had no connection to my B12 deficiency and no matter what I said it didn't make any difference."
Honestly, this doctor sounds like an idle so and so who really needs to go back to school. Change doctors if you can as brain and memory problems are one of the most obvious of symptons and it sounds like he just can't be bothered.
However, have you had your thyroid checked, this can cause similar symptons with regards to thought processes. Check out the Thyroid UK website, they have loads of helpful info and they also have a community here on health unlocked.
I have Hashimotos, an auto immune thyroid condition and pernicious anaemia with positive IF antibodies.
I finished my loading injections just before Christmas but found that I just can't cope without daily sublinguals of 2 x 5000 mcg.
This seems to be helping slightly in the memory/brain function department, I feel a bit clearer but once the fatigue hits early afternoon you might as well be talking to a bowl of jelly.
I would definitely say that the memory function problems are not just down to your age as I'm only 6 years behind you and not ready to consign myself to the dimentia bin yet. Get or see a different gp who is actually interested in your well being.
Good luck, I hope you find someone willing to help.
It is not my age if it was even 1 of my friends would be showing the same symptoms. I have been checked for thyroid....all clear. I would like to add that I had symptoms for over 2 yrs and was told its your age. When my hair fell out after complaining of a prickly feeling in my scalp I was told my blood tests had come back clear and I had alopecia. Then had another blood test 11 months later by a different doctor and was asked why I had not been treated on the last blood tests, when I explained that the previous doctor had said there was nothing wrong she said that it had showed up then and had been missed. Well after loading dose my scalp felt better and I now have my hair back so they now say it was caused by the B12 deficiency. I am just wondering how bad my memory problems have to get before they take any notice or diagnose me with some awful form of dementia.
As I said, memory problems are not due to your age but it is hard to explain how bad it is to somebody who has never experienced the way it feels. From what I've read, some doctors just will not listen regardless of the symptoms but is he the only doctor in the practice.
I too am losing hair, probably about 50% thickness and receded 1/2 cm at the front. Quite distressing as always was my crowning glory. I'm looking forward to it growing back!
Can you take extra b12 supplements. Since my last injection I have been taking 2 x 5000mg sublingual every day. IT IS the only thing that enables me to function daily and makes brain clearer. If I don't take them symptoms of neuropathy, exhaustion and confusion return immediately.
Finally, I know you said that thyroid function was all clear but doctors know as much about thyroid as they do about B12. Did you get a copy if the results. TSH needs to be very low in range to show that thyroid isn't struggling and brain / memory problems are another significant symptom.
Hopefully you can persuade gp to refer you to a neurologist who may listen to you.
Thank you for your reply. I am going to insist on seeing a neurologist and if they do not do anything I think I will make an official complaint. I have seen 4 different doctors so far. The 1 I am seeing at present is trying I think but still does not understand totally.
I agree with the other replies.
I too had a memory test at the docs because of similar problems. It showed no problem but they asked me things like, what is the date and who is prime minister!
This was about 2 years ago and it's only recently I've discovered I'm B12 deficient, or very low (284 with a range of 190-900). I've been on thyroxine for more years than I can remember but these last 2 years (or is it more!) that the symptoms have compounded. I said to the gp recently that I can be ironing a t-shirt and suddenly forget how to fold it! It's momentary but very worrying - and I refuse to put it down to 'my age' as I'm only 65!
I've been given B12 tablets as of yesterday but they are cyanocobalamin and they're only 50mcg so I think I'll be self medicating.
Go to different doctors in the practice and see what they say. I know they close ranks a bit but it's worth a try before changing practice.
Good luck x
Hi Matty220,
I just looked at a thread on Thyroid Uk you wrote.
healthunlocked.com/thyroidu...
As this is Missneats thread I won't write much. I think you would find it helpful to start your own thread on the PAS forum.
I live in Cornwall and changing surgeries would make no difference as they all seem to make the same mistakes. (news gets around) I even tried a private doctor and he was even more unknowledgeable. I am going to insist on seeing a neurologist and hopefully they may be able to help.
I am so sorry but your Dr is wrong. My husband was misdiagnosed with dementia after suffering memory and mental health problems. It's a long story but eventually his Psychiatrist realised he hadn't been tested for B12, then again eventually diagnosed with P A. Much better now on B12 injections. I suggest you try to get your Dr to read Martyn Hoopers book on P A. You could ring the Pernicious Anaemia society for advice as well. All the very best.
My suggestions
a) try to see another doctor - though chances are that they will be just as unaware but ...
b) try educating your GP about B12 and its range of symptoms by giving them a good book on B12 - eg one of Martyn's, Could it be B12? by Sally Pachalok
c) self medicate - that doesn't necessarily mean self injection - see if another delivery method works for you - eg sublingual tabs or sprays, nasal spray or skin patch.
Most of the diagnostic tests used by GPs are a bit hit and miss as the GPs have never really been trained to administer them. There is an awful lot that can be picked up from the memory test (having sat on one with my mother) but you really need to be aware of what you are looking for. Sounds like the problems you are having aren't so much memory (my mother did an awful lot better than me on the pure memory elements of the test) but what was quite obvious was that she was having problems with the cognitive elements - she had difficulty following some of the instructions she was given and needed to be prompted and one thing in there was drawing a clock face with a particular time - which she managed but it took an absolute age. The big problem she has is reasoning, she can follow an instruction but a set of instructions or instructions that involve a decision just aren't going to work.
Possible that if your surgery has a memory specialist they might be better at administering the test and pick up on the other things but you may still have a problem as you may need the GP to refer you for that.
You might possibly find that meditation - mindfulness - helps - know that sounds really whacky and way out but it does help you to be more aware of your thought processes and where things are going on to auto-pilot more than they should. I play the cello a bit and sometimes my mind wanders and I find myself forgetting where I am in a piece that is generally done a more by 'muscle memory' than conscious memory - bringing myself back to my conscious memory sometimes helps.
It is also possible that you may actually be in a place where you are more aware of when slips happen - I think they do happen at every age but when we are young they just get dismissed and forgotten really quickly - not saying that is necessarily the case here but it may be a factor. This can mean that we end up more stressed and that certainly does affect the memory making us even more likely to have a little slip ... so you end up in a vicious circle. I find mindfulness helps with that sort of vicious circle as well as it means you are a bit quicker realising that is what is going on and hence can take action - respond differently to the concern about an incident - much earlier before the spiral gets out of control.
However, would definitely look at c) as well.
Have you been tested for Coeliac disease? I have read that some Coeliacs suffer from brain fog and memory lapses. It is possible to have Coeliac disease even if blood tests come back negative. If the tests come back negative there are other tests and investigations that the GP can order.
See links below.
Helpline 0333 332 2033
coeliac.org.uk/coeliac-dise...
coeliac.org.uk/coeliac-dise...
"the 1st doctor said it was my age (which is 56)"
My experience has been that sometimes doctors assume that many symptoms are down to being menopausal or perimenopausal when there may be other causes.
Some sufferers respond better with increased injections and/or to a different type of B12 (Cobalamin). I seem to need a huge amount of B12 to get a response.
Have you read Martyn Hooper's latest book? I gave a copy to my GPs.
"What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency"
He gives a few case studies where the sufferers needed a lot more than the standard NHS treatment.
I do sympathise. I had awful problems with memory,confusion depression and totally numb feet. ( only 1 injection every 3 months). Have to self-inject now every 2 weeks. G.P. strongly disapproves of course. Has helped ENORMOUSLY! I use Methylcobalamin. You will get help here if you decide to go down that road. I am 79. Best wishes to you.
Hi
I have hydroxocobalamin jabs I am not sure if there is any difference. How do you get your medication? I live in the UK
have two sources for Methylcobalamin. Oxford Biosciences sell dried Methylcobalamin (google them) and tell you where to obtain saline to rehydrate it. Arnika apotheke in Munich sell the ampoules ready to use (Internet) You need to E.mail them or 'phone them with your requirements(they speak perfect english) You pay them in advance by Paypal. Needles, syringes etc. from Amazon. Methylcobalamin is supposed to help neurological problems. It is one step nearer to absorption than Hydroxo.
"Age" is just doctors fobbing you (us) off. I have three friends around the same age and they're all leading full active lives with demanding multi-skilled self employed jobs, travelling, socialising. None of them have any kind of memory loss or cognitive problems, or loss of energy.
I think many of us go through a similar thing. I regularly call things by the wrong name and initially it terrified me but as time goes by it becomes less frightening and I find I do it less.
The sad thing is, we go for professional advice from these Drs and come home feeling worse about ourselves. I have just about lost every hobby I had because I can no longer keep up with them (horses and gardening), and for some reason they assume we are having so much more fun seeing them for help. God what egos! Grrrrrr
I'm "only" 43 now but I was just as bad when I was in my 20s and I'm sure my levels dropped following liver failure and a heart op.
Age has nothing to do with it and certainly isn't a reason not to improve quality of life. I can't believe the prejudice and abuse that is dished out by so many GPs and am very sorry that anyone feels discriminated against.
I was given a similar response when I went to my doctor and complained of memory problems. She looked at me with absolute amazement and said I couldn't expect anything else at my age. (I was 50). I stopped seeing that doctor then, and saw another one at the practice. I had little more success, and in the end I decided to find out what was wrong myself.
I started researching my issues - very difficult to do when you have brain fog, no concentration, and memory problems.
The things that affected me were underactive thyroid issues, severe iron deficiency, and I have a functional B12 deficiency. I am also intolerant of gluten, although I don't have coeliac disease.
One thing I have learned is that doctors don't care about symptoms. They do blood tests and if, for example, you had your ferritin tested and the result was 13 with a reference range of 13 - 150, your doctor would say you are fine. In some cases doctors would let it drop even further before treating. A level of 10 might be described as being a "tiny bit anaemic", no cause for concern. When it drops to 5 they might treat you with too low a dose of iron supplement, then they would re-test in 3 months. If it is 13 or higher they will stop prescribing.
Something similar to what I describe happened to me. I started treating myself and found that I felt at my best when ferritin was roughly mid-range - about 70 - 80 (ish).
This is why you must get copies of your blood tests, including reference ranges. Then you can research what the numbers mean. Be aware that different tests have different optimal ranges, high in range isn't always best, and could be dangerous. For ferritin most people feel best mid-range. Being high in range for ferritin suggests you may have a serious problem. B12 is best high in range or even over-the range (it isn't poisonous).
When my hair started falling out the doc said 'ah, it could be your statin - I had another patient on that statin and her hair was falling out........'!!!
He changed my statin but I now refuse any statins at all and feel better and am no longer losing hair. If you are taking statins its worth thinking about, as statins also have other side effects including 'brain fog' and confusion.
I also live in Cornwall (Truro area) and I have been told by my doctor that I do not have PA even though I have been having injections for 11 years now and also have bad memory problems and most of all the symptoms of PA. Sounds to me that you are in the same surgery that I am in!
I've had a letter from my doctor asking me to go in March to have a blood test but no other information about why so I rang him extremely worried about why he had sent me this letter. I am suffering from hyperparathyroidism which has the same symptoms as PA, and, apparently the consultant for that has written to my doctor and advised him that enlarged red blood cells and a raised mcv are not only signs of PA but I could be suffering from something else that has enlarged red blood cells.
My doctor has spoken to a haematologist who, after checking my last blood test results taken at the hospital, advised that I don't have PA but could be something else causing a B12 deficiency, I haven't tested positive for IF antibodies according to the doctor but have been suffering with enlarged blood cells and all the symptoms of PA since 2004 but that wasn't picked up for a year until I arrived at the surgery practically crawling on my hands and knees with exhaustion, but I can carry on with my 6 weekly injections if I want to !!?
You have my every sympathy as you, like a lot of people on this website, are beating your head against a brick wall (or talking to one) when it comes to your doctor's knowledge of PA.
Keep your chin up and remember you are not alone.
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