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Pernicious Anaemia Society
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Are these neurological symptoms?

Hi, this is my first post. I recently got diagnosed with B12 deficiency, I went to the GP with lightheadedness, dizziness and breathlessness plus rapid heartbeat and palpitations during/after exercise. Full blood count revealed enlarged red blood cells, then low B12 but normal folate. My B12 level was 154.

So I was put on the loading doses (have had three) and GP says I will have the injections for life. It was supposed to be 3x per week over 2 weeks but this has proved impossible: surgery has no appointments for 3 weeks so sent to treatment room at different surgery, but it's closed on a Wednesday and I didn't want injections on consecutive days (if that makes sense?) So it's two per week.

Anyway, I also have had memory issues for several months, nothing major just unable to recall names, find the right word etc. Also pain in tips of my toes, aching legs, cold feet. Since starting the loading injections I have had a little bit of tingling and numbness in my feet and hands, but again nothing major. I did mention it to the GP last week but she just said see how it goes over next few weeks. Should I be concerned because I know the treatment for neurological presentation is every other day until it gets better?

I tested negative for IF antibodies and GP says in that case it's not pernicious anaemia. I take pregabalin(Lyrica) for anxiety and thought my memory issues were due to that. But now I wonder!

Very confused. Don't feel any better and troubled by the whole business!

Thanks for reading πŸ™‚

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Just a quick reply , I have to dash . Just because you had a negative IF antibody result DOES NOT mean you don't have PA . It is a notoriously unreliable . It might take sometime to get improvement . It depends on how long you have been deficient . You need to make sure that you have plenty of folate/ folic acid ( green leafy vegetables or a supplement ) It works together with B12. I would print out a copy of those guidelines that you mention , and take them to the surgery .

Do not despair please . I had a level of 150 -confusion, exhaustion brain fog , numb feet . My GP dismissed me as a hyperchondriac . I had to go to a private GP at a Nuffield hospital to get a diagnosis . I eventually had to resort to self injections to get well , as my GP woulc only give me 3 monthly injections ., which were insufficient .

You will have to fight to get adequate treatment, and that's difficult when you feel so unwell . You may succeed , but many people do not . That's why this Society was formed . If you are a member you can get help . The society will intervene on your behalf . They have often been successful . Only if all else fails , should you think about S.I.

Very best wishes .

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Hi Curlygal

It took month rather then weeks before the feelings you described and I also experienced to slowly improve or disappear. So hang on in there. Perhaps you will no longer need the medication for anxiety soon. Don't expect wonders too quick, eat well, rest and foremost listen to your body. You need a good balance of all your vitamins especially all Vitamines B, D( if you supplement then also take Vitamines K2, better to absorb the Vitamines D3) and minerals like magnesium. Read the information on PAS site, better still become a member, to feel supported makes a lot of difference and can help you to help yourself.

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Hi Curlygal as others have said try not to worry about how you are feeling at the moment as stress only uses up B12 needlessly and it is still early days in your treatment. Some of your symptoms may improve quickly whilst others may even appear to get worse as the B12 starts to repair the damage done to your nervous system. This is quite normal.

Do please get your Folate level checked - it may not necessarily have been done even with a Full Blood Count.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I'm not a medically trained person but have had P.A (which is a form of B12 deficiency) for more than 45 years.

I wish you well

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I am taking a multivitamin OXYLENT, my ferritin was 23 when it was tested in April, always on the low side range 13-150. Dont think there is Iron in OXYLENT. I am fighting to get loading doses now after been on trial injections while waiting for MMA test to come back. Came back high, b12 def comfired after fighting this for 3 years. GI doc wants me to get mthly injections for four mths and then every 3mths for four mths and "see" if I be "okay"! Haven't being told whats the cause of my b12def. It is so soul wrenching. Any advice would help. Thanks.

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Hi Butterfly,

Might be a good idea to start your own thread ButterflyActive as you'll probably get more replies that way.

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have you been tested for diabetes yet? I'm currently waiting on a 3 monthly blood test results to see if I'm diabetic and also requested for a B12 deficiency as I've been talking omeprazole for over a year due to having a stomach bleed,and I believe this medication can cause vitamin deficiency,but I suffer with peripheral neuropathy and this is a horrible condition,severe pins and needles,muscle twitching and cramps in my legs,so some where along the line it sounds like you might have PN,so getting a clearer picture on what's going on with you can then hopefully tell you what's happening within your body,so I totally understand where your are coming from with your post,not much of a definite answer but just something else that might need to be included in your quest for your symptoms,take care,thanks

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Hi,

Some links that may be useful

Lists of b12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

"Full blood count revealed enlarged red blood cells"

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

"negative for IF antibodies and GP says in that case it's not pernicious anaemia"

Are you in UK?

In UK, it's acknowledged that it's possible to have Antibody Negative Pernicious Anaemia (PA where IFA Intrinsic Factor Antibody test has a negative result).

Flowchart below from "BSH Cobalamin and Folate Guidelines" outlines when Pernicious Anaemia and Antibody Negative Pernicious Anaemia should be diagnosed.

stichtingb12tekort.nl/weten...

My experience in the UK, is that some GPs are not aware of the BSH Cobalamin and Folate Guidelines or that Antibody Negative PA can be diagnosed...I gave my GPs a copy. I'd recommend reading the whole document.

Link to whole BSH Cobalamin and Folate Guidelines

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

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

B12 blogs

Martyn Hooper's blog

martynhooper.com/

There is also an interesting B12 blog on "B12 Deficiency Info website".

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

Other B12 info

Some may not apply if you're not in UK

1) Pinned posts on this forum, I found it useful to read fbirder 's summary of mainly UK B12 documents. Link to summary in third pinned post.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

3) BNF (British National Formulary) Chapter 9 Section 1.2 has info on UK B12 treatment including that for neurological symptoms. Copies of BNF can be obtained from a good bookshop or internet retailer.

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

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

UK B12 treatment info can also be found in "BSH Cobalamin and Folate Guidelines", about a quarter through document.

Unhappy with treatment (UK info)?

Link about writing to GPs about b12 deficiency. Point 1 is about undertreatment of neurological symptoms.

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

I am not medically trained just someone who has spent years trying to find out what is wrong.

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Hi, thank you so much for the replies, and sorry for not posting a response sooner. I had my injection on Monday and am finding they completely wipe me out, especially the day after. Two to go! The good news is the nurse offered to show me how to self-inject, which makes it easier plus if I later decided to go on to supplemental self injections I will know how!

I am in the UK yes. I have been doing a lot of reading about this and it's a total minefield! The guidelines from different bodies all contradict each other. I feel "lucky" that I'm getting treatment because in theory my level is in the normal range (just). I could have been prescribed a short course of tablets, for example, or nothing at all.

My folate was checked with the B12 and was normal. They also checked thyroid and fasting glucose, both also normal. The only issue from the FBC was enlarged red blood cells.

I do still suspect it may be PA because I have a condition which carries an increased risk of autoimmune diseases. My mother has hypothyroidism as well (she has the same inherited condition as me). I was treated for h-pylori last year after terrible reflux issues. Around that time I started to really feel unwell, but haven't felt right for 3 years since I began having migraines. They have stopped since I started taking Pregabalin.

Is it worth asking about an anti parietal cell antibody test? I made an appointment with GP for 2weeks from now by which time injections will be finished.

Thanks for reading, really appreciate it πŸ™‚

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how interesting,now prior to having my stomach bleed I was getting absolutely terrible headaches but they were always whilst I was asleep and these lasted for around 3 months,now I don't normally suffer with headaches but man these were really powerful headaches and would have roughly 2/3 per night,so it seemed strange that once the bleeding had been had been cured the headaches disappeared within days,I wonder if this is sheer coincident and I wonder how many more people have had headaches with resulting stomach/B12 problems,I've been on pregabilin for 2 years or so,hopefully you treatment will make you feel better over the coming weeks,thanks for your reply

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"supposed to be 3x per week over 2 weeks"

"Should I be concerned because I know the treatment for neurological presentation is every other day until it gets better?"

If you have neuro symptoms, then I think it would be worth querying why you are being given the standard treatment for B12 deficiency without neuro symptoms. Memory problems, balance issues, tingling , pins and needles , tinnitus are possible neuro symptoms and there are many others. See Symptoms lists in my post above.

As you say above, treatment for B12 deficiency with neuro symptoms in UK, is a loading injection every other day for as long as symptoms continue to get better then once symptoms are stable it's a maintenance injection every 2 months.

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

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

Treatment info is in BNF Chapter 9 Section 1.2 and also BSH Cobalamin and Folate Guidelines.

Consequences of undertreatment of B12 deficiency can be severe, including neurological damage.

b12deficiency.info/b12-writ...

"My folate was checked with the B12 and was normal."

Do you know the actual folate result?

Do you get copies of all your blood test results? I learnt to get copies after being told everything was normal and then finding abnormal or borderline results on the copies.

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

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Hi Curlygal,

I had all of your symptoms, plus I had one short episode (seconds) that I can only describe as if 2 cattle prods had been attached to my temples and a buzzing sensation going through my head and disturbance of peripheral vision like I had blinkers on. Not nice. I also had tenderness on my scalp and a constant feeling of heartburn. I have had Raynauds since I was 16. I don't know if that is connected to B12 deficiency or low folic acid. I will need to look into that. I have managed that over the years with exercise, yoga and Ginkgo Biloba which is also good for memory.

My B12 is considered normal at 270, my serum folate was on the very bottom of the chart at 2.2. I had all sorts of tests, checking to see if I had had a mini stroke, MRI, CT scan, chest x-rays, ECG, 48 hour heart monitor. I have not had a mini stroke, the brain scan came back negative except for to say I have some white spots on the brain which are normal with age. I am still still waiting for result of heart rate monitor. I would like to know what the white spots are, again more homework to be done.

The hospital neurologist advised 5mg of folic acid per day, effectively overruling my GP who's opinion was not to give me any treatment but that I should not consume any alcohol for 3 months to see if that improved the red blood cell count which was at MCV 104.6 (max should be 100) and MCH was 34.7 (max should be 32).

I did my own research and formed the opinion that my symptoms could all be put down to B12 deficiency. The medical practice I am with will not treat the symptoms until you are proved to have pernicious anaemia by which time that time it can be too late.

I decided to treat myself and bought B12 patches and sublingual B12 as I had read that these methods were as successful as injections at getting the B12 into the system. You cannot overdose on B12 so it is safe.

I don't know why I am low in iron and B12. My diet was poor for a period due to stress, when I am stressed I lose my appetite. I have taken that on board and improved my diet. There is evidence that age (I am 64) can affect the ability to absorb nutrients from diet alone. I also went to India a couple of years ago and had various injections against disease. I did get Delhi belly a few times while I was there. It might be nothing to do with that, but in the circumstances I am taking acidophilus, kefir and natural yogurt to repopulate healthy gut flora.

I have also had 3 sessions with a chiropractor who also does cranio sacral therapy thinking it might help the scalp tenderness and dizziness and balance problem.

All of my symptoms have resolved within a couple of months so I intend to keep up with self treatment.

Any advice would be much appreciated and I hope some of what I have experienced will be of help to others.

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ps Also taking sauerkraut for its probiotic benefits.

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