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Pernicious Anaemia Society
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Help!!

4 months ago I started developing pins and needles sensation all over my body. Had bloods taken and my b12 level was 84. I then had 5 injections within 2 weeks and I started having serve symptoms like muscle spasms and extreme tingling. My symptoms seemed to calm down (but never went away). Now my symptoms have become severe again but my blood tests came back normal.

Anyone else had anything similar and does it take a while for symptoms to go?

Thanks

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Similar but not the same. I'm post 6 loading doses(10 days after) and although migrain tremors and vibrsting feelings of body subsided for now dizziness and difficulty in walking and sheer exhaustion now.

I'm still waiting. If the neurological symptoms that had stopped come back everyone has said on here that more B12 needed.

Are you actually functioning or bedbound?

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I have been in bed since Sunday but think has been made worse by having the cold/flu. I can get up and walk but feel so tired and arms tingling and aching like before I had the injections.

My mental state hasn’t been too good since the start of it and just want to feel “normal”.

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normal blood tests 4 months after loading shots doesn't mean anything.

After loading shots your blood levels will be off the scale and then they will fall as your kidneys remove excess B12 from your blood. How quickly this happens varies a lot from person to person.

Most B12 is absorbed in the ileum and blood levels are maintained at the level that is right to you using some significant stores of B12 in your liver. However the mechanism that allows levels to be regulated relies upon releasing the B12 in bile to be re-absorbed in the ileum. If the absorption mechanism isn't working that means that you can't build up effective stores and regulate levels of B12 anymore so the only way of making sure enough B12 is available to your cells is to find another way (eg injections) of maintaining levels in your blood.

Unfortunately a significant number of people seem to react to high B12 levels in serum in a way that makes the process that allows B12 to pass into your cells much less efficient meaning that they need to have much higher serum B12 levels after loading shots.

Unfortunately GPs often aren't aware of this.

Standards in the UK state that, unless a B12 deficiency is known to be dietary (in which case it can be treated with oral supplements), that injections are going to be for life. The regime for treating a B12 absorption problem where deficiency has resulted in neurological problems - as was the case for you - that loading shots should be given 3xweekly until there is no further improvement and maintenance does should be given 2 monthly there after - though this isn't necessarily enough for many people.

Source for this is the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders. Your GP (assuming you are UK based) can access these through the BNF though they can also be accessed here (though I'm not sure this is the latest version - there were some revisions about a month ago..

onlinelibrary.wiley.com/doi...

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Hi Jessie8

Was your Folate level checked in the latest tests? Have you supplemented with folic acid?

It is important that your Folate level is monitored as this is essential to process the B12.

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.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different and of course, your having 'flu now is not good.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

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Thanks so much to both of you.

I’m not sure what my folate levels were but will check tomorrow.

I just feel so fed up with feeling like this and I just want a quick fix (even though there isn’t one) also really nice to know that I’m not going mad and that other people have experienced similar.

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Hi Jessie8 I wonder if you live in Gloucestershire. I'm guessing that by you getting 5 loading injections - a retest and then told you are normal.

Gloucestershire is a difficult county to have B12 deficiency or PA in. It does not follow the NHS guidelines but uses its own which have not been updated since 2004/5. I suggest you check the NHS guidelines and see what you should be getting and then decide what suits you.

Some people have fought their GP's, successfully, for the NHS treatment, others have given up and self inject.

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Hi Beginner,

Yes, I do live Gloucestershire. Thanks so much for replying. I will certainly look into the guidelines ☺️

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Hi Jessie8,

Are you aware that there is a Gloucestershire PAS (Pernicious Anaemia Society) support group? I've been told it's very friendly.

You would need to be a PAS member to access contact details.

UK guidelines suggest that people with B12 deficiency should be tested for PA. This is called Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative. See BSH links for more info.

Have you been tested for PA?

For Coeliac disease?

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

For H pylori infection?

patient.info/health/dyspeps...

There are other possible causes of B12 deficiency.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Lots of useful B12 info on this website. useful section on writing letters to GPs about B12 deficiency.

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...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

Please look up some of my older posts as there is a lot of info in them. Sorry too tired today to include more. I wrote a lot on "Suffering from Neuropathy" thread by kerri05.

I am not medically trained.

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I see Gambit62 has given you some links to find out what you should get and even that may not be enough. Good luck.

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Hi Jessie - Tingling (pins and needles) can be from many causes including Peripheral Neuropathy from lack of B12. The toes are the first to go, then numb feet and then grow up the leg. Generally the first to feel it since they are the farthest away from the source since they are starving to death from lack of B12. Yes, I was bed bound, unable to walk with Pins and Needles in feet and legs up to my knees plus other symptoms too. I seem to have quite a time with B12 since it is from Celiac Disease and not typical PA. When it is not discovered the nerve endings die and then it go up the spinal column into the brain. The problem is that so many other diseases look like PA, but are not. Be patient, it takes B12 time to work and sometimes the pins and needles get a little worse -- for that I use a 30mg temazepam which settles them right down. You need to understand it takes time to build a myelin sheath around each nerve cell. Do not despair. B12 will get the job done if you give it sufficient time. Be well~Pood. Hydroxocobalamin and Methylcobalamin are excellent sources for self injection of B12. Maybe you have a friend or two in the US that could send you some. It's not expensive. Be well~Pood

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Thanks Pood!

This is very helpful. I’m really impatient and want it to be fixed now but know I will just have to wait.

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Hi Jessie I'm so glad I'm reading this. I am exactly the same as you..I was to get 6 loading injections but felt so ill after the 4th the dr. Has stopped me there and not gone on to do 5 and 6..and just told me to go and get some b12 tablets..and go back in another 3 month for a blood test..I don't get it!!!!!!! I'm on gabepantin for the pain and certainly don't want to be having to take these everyday,when the source of the problem hasn't seemed to be resolved yet in my eyes..I too am desperate I want to be normal..just wanted to say your not on your own x

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Thanks Pastie121, lts so nice to know that I’m not alone. The Dr’s don’t seem to be that clues upbon it to be honest and I have to wait until 6 months after my injections to get another blood test.

I have ordered b12 oral and vitamin D as was advised by my Gyno (weird, I know) she said that vitamin D helps absorb B12. I’m willing to try anything to be honest. Did. They test to see if you had PA? As the tablets may not help if your body isn’t absorbing the B12.

I have been off work for 1 week now and am getting so frustrated with it as I hate doing nothing but my body won’t allow me to do anything.

Hope you feel better soon and I will let you know if the B12 and vit D helps.

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Gabapentin is generally reserved for diabetic peripheral neuropathy. It gets extremely painful as one is unable to even have a sheet touch the foot/feet. Gaba and pregaba just kind of block the pain signals in the brain and does zero about WHY you have them. We don't use that much B12 so your blood level may still be higher than it was at the beginning due to the 4 loading doses. Supposedly, we only use .1 per day and that's of cyanocobalamin which doesn't last that long. Before passing out dangerous drugs, you should have a very complete blood panel done. Any possibility of a different GP?????

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I'm in Gloucestershire too, and fighting the same battle. I had 5 loading doses and GP now plans to 'leave me' for 6 months and then retest my B12. My B12 was 122 before injections despite decent diet and taking oral supplements. Intrinsic Factor and Anti-Parietal Cell tests were negative, but I have a whole raft of gastric and neurological symptoms. I think I feel slightly clearer-headed following the loading injections, but more breathless.

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I feel for you BlackInk, I don’t see how they can just leave you for 6 months with these symptoms. There doesn’t seem to be too much information from the Dr, really just a waiting game.

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There is a really good site in the US: b12awareness.org. Watch the movie and listen to the people that have had SEVERE B12 problems. More info than you will find about anywhere on the globe. In the US we have to get a Physician's Rx to buy Hydroxocobalamin so I am asking at my visit next week if I can buy it and then I will only need an injection every two months. Another good one was in the Washington Post in 2000 about PA. (newspaper). The author of the article had it and it took forever to find out what it was. Like most of us, totally clueless about it. Who would ever think that a little vitamin could do so much and also such horrible damage. Peripheral nerves recover. When it gets into the spine and brain it takes much longer to recover and recovery is not as great as when it is only in the peripheral nerves. Stupid hospital here thought it could be but gave me antidepressant instead. DUHH!! Finally when it got up to my knees, people paid attention.

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Hi BlackInk

Just wanted to draw your attention to fact that there is a Gloucestershire PAS Support Group. You would need to be a PAS member to access contact details.

pernicious-anaemia-society....

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It will get better. My GP diagnosed me exactly a year ago and I feel so much better. I had pins n needles, hair loss, joint pain and high anxiety. All disappeared after my B12injections. I wish you well. Stay positive!

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Hi Jessie thanks for reply. No not a mention of vitd..I have booked another app with dr. For 10 th Dec to discuss further..so in the meantime just have to stick with pins needles leg pain dodgy eyes and confused thinking looking threw foggy eyes. But hey ho another week or so won't make much difference I've been like this for months xx

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My b12 level is 55 ..

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You poor thing!

I have received my oral B12 and vit D today so will let you know if I notice the difference. Hope you get a break my lovely.

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With neurological symptoms, my understanding is that you should have B12 loading jabs every other day for as long as symptoms continue to get better then a jab every 2 months. See BSH, NICE CKS, BNF links in my post above for more info.

I am very surprised you have been advised to use oral supplements. Under treated B12 deficiency can lead to further deterioration including spinal damage.

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...

Link about writing letters to GP about under treatment of B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

Couldn't resist writing more, feel concerned on your behalf. Please think about contacting PAS soon.

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Yes please do...

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