My Neurological Symptoms Won't Improv... - Pernicious Anaemi...

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My Neurological Symptoms Won't Improve Any Further

JhonnyBoy
JhonnyBoy

I am 20 years old and my B12 deficiency started to show 7 years ago but was recently self-diagnosed by me.I had B12 level of 140.I went to the doctor and he gave me methylfolate(300mcg per day) and methylcobalamin(1000mcg divided between the day) for 2 months and added a tablet of vitamin D3 and a syrup with the following components for the last(3rd month),once i complained that my neurological symptoms were not showing significant improvement and that my muscles were still hurting:

Calcium Glycerophosphate

Potassium Glycerophosphate

Sodium Glycerophosphate

Magnesium Glycerophosphate

Vitamin B1

Vitamin B2

Vitamin B6

Nicotinamide

He told me that i would most probably experience rapid improvement in my neurological symptoms after i'm on these drugs but it's been 2 and a half months since my medicine was started and i don't feel completely normal.He conducted my blood test and my Mean corpuscular volume (MCV) was within the upper normal range.He told me that by the end of the 3rd month,i would be completely normal but i don't feel like it.Once i started my medication i felt even worse with headaches and anxiety but after a while i started to feel better.My neurological symptoms have improved but they aren't completely treated.My eyesight has shown a slight improvement especially my night vision,i can sleep better than before now and i feel less tired and anxious now but i still have these symptoms although to a lesser degree.I still am constantly constipated or with diarrhea and i still have to urinate excessively and repeatedly.I also do have soreness and a painful body.

25 Replies
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You are taking oral B12 and it's not doing anything?

It sounds as if you don't need all the other stuff, but that you do need injections of B12.

You mentioned that some of your symptoms have improved which means some percentage of 1000mcg is getting in your body. You might have absorption problems in which case this might be as little as 1% of B12 being absorbed. In any case as fbrider mentioned you should try to get B12 injections but if that is not possible then try to increase your current B12 intake. I would suggest 4000mcg-5000mcg a day and then evaluate yourself after few weeks.

JhonnyBoy
JhonnyBoy in reply to TACCT

The next time,i visit my doctor,i will try to persuade him to prescribe me injections but i would like to ask why my MCV is 89.3 which is high but within the normal ranges.Also,this is off topic,would i be needing injections/supplementation of B12 all my life or would i only need them till i'm treated?

TACCT
TACCT in reply to JhonnyBoy

When were you tested for MCV? before starting your treatment or at 2 months interval. I don't know what were your lab ranges but higher than normal MCV values indicate macrocytic anemia (large than usual red blood cells).

If you do not have Pernicious Anemia then once your symptoms are resolved you can stop these supplements and try to eat food with enough B12. But given your history you may have absorption problems. There are tests to determine PA (IF - Intrinsic factor test) but they are not always accurate.

fbirder
fbirder in reply to JhonnyBoy

Not everybody with low B12 has macrocytic anaemia. Indeed, it's quite common to have iron deficiency at the same time as a B12 deficiency. Iron deficiency causes anaemia with smaller than normal cells. If you have them both then the MCV can be normal (the mean of 'large' and 'small' is 'medium').

fbirder
fbirder in reply to TACCT

Even if there is no absorption problem at all, the transport mechanism for getting B12 from the gut to the blood (using IF) has a limited capacity of about 10 mcg at a time (that's 1% of 1000 mcg).

JhonnyBoy
JhonnyBoy in reply to fbirder

Thanks for all your answers and thanks a lot for helping me.One last thing which i would like to ask is whether sublingual methylcobalamin is as effective as people say it is?Can i use these tablets instead of getting injections?Iv'e heard that there is 10% to 33% absorption from these tablets?

Supul
Supul in reply to JhonnyBoy

Hi JhonnyBoy

Hope you don't mind me chipping in here. I'm sorry you are suffering so much. And, what an intensive research project your symptoms create?

I hope your health improves very soon and that you find a long-term plan to manage your dilemma.

Currently, I am researching around this topic because my adorable grandson, age 3 years, is suffering so much with similar symptoms. However, he has been having, and continues to have, (over the last 2 years), horrendous nosebleeds.

Extremely frequently, he soaks his bedding and nightclothes, through horrific blood loss that wakes him.

He is also getting labelled as a naughty, difficult child, but i personally feel, he literally gets so frustrated with symptoms you describe and doesn't know how to get the help he needs.

He just cannot keep up with his peers. I have walked with him and noticed some days he has no energy whatsoever. By afternoons he can be seen spinning around on the spot, and I'm convinced he is trying to make his brain and body function to keep going...

Do you get nosebleeds? Do you feel your brain is affected too?

This poor little boy has been given prescription iron syrup 3 times a day for 2 years. My daughter took him to a private ENT consultant who agreed anaemia severe, ear infection too and cauterised his nose, twice!

We now continue to wait for an NHS hospital appointment which we have finely got coming in June!

Meanwhile, this little boy suffers so badly and I know some of your own suffering.

I'm sorry if you feel I bombarded your question/ appeal for help tonight. I just do not know where, who, or how to get help for my grandson. Your story reminded me of him, and my heart went out to you too.

Bless you, I'm sending you best wishes. X

JhonnyBoy
JhonnyBoy in reply to Supul

Hi Supul,no you haven't bombarded my question,we're all here to help each other :) I don't get nosebleeds now but when i was young i used to get extreme nosebleeds,i remember being in the nurse's office quite frequently because of my nosebleeds.I used to get them in early morning,i didn't realize i was bleeding until i looked down at my white school shirt which was full of blood.I also felt weird and not normal,i never fitted in with the other school kids,i never talked to anyone for years and didn't know how to communicate and i didn't know how normal people do things.My classmates called me weird and some also thought i didn't have a tongue.My teachers frequently called in my parents,to complain to them about me not fitting in.Basically,yes i did have a lot of mental problems,i had a lot going on in my brain,things which should not be going on in a child's brain.I also was prone to chronic injuries,i still feel pain in places in which i got injured 8-10 years ago.

I did have these problems as a child but never really thought that they were because of a deficiency(maybe because i was a child).As i grew older,the nosebleeds did go away and i still am a misfit but i have learnt to cope to an extent.I do suffer from anxiety,stress and depression but i am coping.I was also 3 months premature,maybe that is a reason to my past and present problems.

Don't worry,you just need to get him checked,get his medical problems treated and he'll be all fine.I never really had support and love from anyone in my childhood not even from my parents because of various reasons but i turned out just fine.With a loving and caring grandfather like you,i think you're grandson will turn out to be a fine young man.

Supul
Supul in reply to JhonnyBoy

Thank you so much for responding JhonnyBoy.

I am so sorry that you did not have the nurturing care every child deserves.

You are not a misfit in a loving world. What is a misfit?

Too many adults just do not know how privileged they are to be around children. Unfortunately, such notions get passed on to generations via those adults. Thus, children name call etc..

Instead of listening to a child through body language, voice expression, and spiritual connection; some adults prefer to label them in derogatory terms. Especially when children do not tow the line... or indeed, when adults don't understand why a child is the way they are..

Consider this, adults who did not try to understand a child, miss a lovely opportunity. Why would any child want to 'fit in', with such people? Because children love, and need to be loved, for who they are, and whatever they are going through.

When children do not feel loved, they begin to believe the labels, and self blame for not 'fitting in'. Thus, some children grow into labels that do not be fit them really.

Well, as you say, you turned out fine! We are all fine... we just have a long way to go to get the status quo to understand that. And, for society to value children.

It's been a pleasure interacting with you.

By the way, I'm a loving grandma, lol, and he does have a loving grandad too!

Your response gives us hope and insight into trying our best to help this beautiful child. Thank you. X

JhonnyBoy
JhonnyBoy in reply to Supul

Well,maybe what kept me going through all those years was this believe that i was special and i took pride in being different.I never tried to fit in but the constant calls by others for me to fit in through out my life are extremely annoying and are still annoying.

Don't mistake my parents for bad parents,they just had problems of their own.My mother is a full blown schizophrenic and her illness wasn't diagnosed till i was 16,before that i always thought that my mother hated me to the depths of her heart,little did i know that something else was wrong.My father is an alcoholic and had a pretty messed up life of his own.They are a little closed minded because they still believe my b12 situation is because of me not having a good diet but the support and love which they did provide me was perhaps the most that they could have provided me with keeping in mind that they were going through really harsh things themselves.I really appreciate the things which they have done for me,even though they were little things,keeping in context their own situations were horrendous too.

Sleepybunny
Sleepybunny in reply to Supul

Hi Supul,

There may be some info of interest in my longer post to JhonnyBoy.

Link about B12 deficiency in children

b12deficiency.info/children...

Vitamin B12 deficiency in children

stichtingb12tekort.nl/weten...

Blog post about parents of children with PA

martynhooper.com/2017/07/21...

I am not medically trained.

Supul
Supul in reply to Sleepybunny

Thank you so much for those links, Sleepybunny. My daughter and myself are on it today. It's the first time we feel anyone can help. You have given us hope. X

Sleepybunny
Sleepybunny in reply to Supul

Hi again Supul,

Probably worth posting your story as a new thread as it will then get more attention. To start your own thread, click on blue Write tab at top right of this page, has a pencil icon on it.

Different types of anaemia, possible to have more than one type at same time.

nhs.uk/conditions/vitamin-b...

If you think there is any chance your grandchild may have PA (Pernicious Anaemia) then I would suggest joining and talking to PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

Does his family have all his blood test results and access to his medical records?

If in UK, recommend reading all the UK B12 documents I posted links to in reply to JhonnyBoy and reading the books I listed. Local library service may have copies .

B12 deficiency is not always well understood by doctors in UK.

Better not add more as this is someone else's thread.

Supul
Supul in reply to Sleepybunny

Thank you I will try th st. X

Supul
Supul in reply to Supul

Sorry, predictive text! I will try that. X

fbirder
fbirder in reply to JhonnyBoy

All the research says that sublingual B12 is absorbed to the same degree as oral B12. About 1% of a 1000 mcg dose is absorbed by either route. Interestingly, the normal absorption mechanism can only handle about 10 mcg at a time - which just so happens to be about 1% of 1000 mcg. That strongly suggests that the sublingual dose is getting absorbed via the normal, INtrinsic Factor mediated, mechanism.

I've not seen any research that shows either route can be effective at all in people with Pernicious Anaemia - who cannot absorb B12 from the gut.

The B12 molecule is too large, and too water soluble, to be able to cross biological membranes without help. To make matters worse, there is a protein in saliva, haptocorrin, which binds to the B12 molecule, ensuring that it couldn't possibly get absorbed.

JhonnyBoy
JhonnyBoy in reply to fbirder

If the body can only absorb 10mcg at a time,then does it mean that it is useless to take more than 1000mcg of oral supplements at a time and any idea as to how much injections i would need to get over my symptoms.How much does the body absorb through an injection?

fbirder
fbirder in reply to JhonnyBoy

Yup, taking massive amounts in a single go is, indeed, pointless. You would be better off taking 3 x 50 mcg per day.

100% of an injection is absorbed.

You poor soul!

With your B12 levels that low I'm not surprised you feel terrible.

Your Dr seems to have some knowledge and understanding of the problem - which is more than most do - but some knowledge without the whole picture may mean that if you have issues that aren't standard you may have more trouble persuading them to think alternatively - just be aware of this.

I expect they are trying you with supplements to see if your problems are because of your diet and if you had responded well then this could well have been the case.

The fact that you haven't had a particularly good response will/should suggest to them that it is an absorption problem and that you will need injections.

If that is the case then you will probably need injections for life. It sounds grim but you get used to it and it's better than feeling so bad. Diabetics usually need lots of injections each day and it's not that bad.

Your headaches were possibly because you were prescribed methylfolate and methylcobalamin (rather than just folic acid and cyanocobalamin tablets) and it is this that suggests to me that your Dr has some (but far from complete) knowledge of the subject. The "methyl" part often causes headaches.

So many of us think we are "wierd" when the reality is that we are just B12 deficient! Well done for getting as far as you have and welcome to our group! Here you will find understanding and support.

Please take the time to read through lots of the replies by the excellent contributors on here, whilst bearing in mind that everyone is different with different requirements - what "won't work" for some, works well for others.

For instance I do seem to be able to absorb more through the membranes in my mouth than I can through my stomach - capsules have much less effect for me than mouth sprays and slow release tablets that I can allow to slowly dissolve in my mouth, whereas other people are fine with just swallowing stuff.

To find people's replies, go to their profile by double clicking on their name and look under the heading "replies".

For help with getting injections from your Dr try Sleepybunny's replies.

I think you will find Foggyme's replies particularly helpful to you too.

Clivealive is our whizz on folate particularly and is also very kind, supportive and encouraging.

But these are only a couple of specific links for you to start with - there are lots of great people here who's replies are essential to giving a broad view of the problems and solutions. After 4 years here I am still learning all the time and also try to get a better understanding of how people are and react.

Pvanderaa and others suggest keeping a symptom diary and this is very helpful, especially when making a case to your GP for more treatment.

I hope you can get the treatment you need to get well - I am sure with regular injections and supporting supplements you will get a continuing improvement in your neurological symptoms and in time will be able to be fairly OK, with management. Keep in touch and please ask more questions as required.

Good luck!

Sleepybunny

Foggyme

clivealive

Hi,

Some B12 links that may be of interest. Some info may be specific to UK.

I am not medically trained.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

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...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range b12 result.

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/

UK B12 documents

I suggest reading all these if in UK.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

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 does not mention recent change to BNF.

"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. Has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

PAS blog post about how PAS can support those seeking PA diagnosis

martynhooper.com/2017/06/24...

B12 Deficiency Info website

b12deficiency.info/

B12d.org (UK charity)

b12d.org/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

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...

Coeliac Disease may lead to B12 deficiency

NICE guidelines Coeliac Disease (2015 version) UK document

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

Coeliac Blood Tests

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

H Pylori infection

patient.info/digestive-heal...

Nitrous Oxide

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

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

More b12 info in pinned posts on this forum.

Some of these links are useful to me but some are not useful to me as i do not live in the UK.I am really grateful for everyone one of you for helping me out so much.I live in Pakistan and living here has it's downsides but it also has it's upsides.You can get most of the medicines here in a really cheap price and you can also get most of the medicines here without a prescription(which is bad but might be helpful in my situation).

I went to a pharmacy and the price for a single methylcobalamin injection is between 0.33£ to 0.55£.I'll go to my doctor and plead him to put me on injections,he's a really good doctor which i found after having a lot of bad experiences with egoistic doctors who think that they know everything about the human body and don't even listen to what the patient is saying.I will ask my doctor just in case but does anyone here know how frequently should i get an injection and which one should i get?

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