Pernicious Anaemia Society

B12 Deficiency - Pernicious Anaemia

I was diagnosed 6 weeks ago, although, my blood results have flagged this up for over 3 years now, its has caused irrepairable damage to me, the nervous system, shakes etc. I always had very tiny shakes as I am an anorexic survivor - although, the damage caused from the disease is detrimental. I have had 6 weeks of injections, my blood level of B12 is 109 which I was informed is very low. I feel like shit, still sleep all day, insomnia is horrendous, even if i sleep a whole night, i can still sleep all day, i've been advised it should pass! I can't see it. They won't re-test my levels until December now because it takes 3 months for your body to adjust and accept :(+

The ability to reply to this post has been turned off.
26 Replies
oldestnewest

Was your result 109 after you were given injections or before. I would imagine that it was before the injections, but I don't want to assume.

Once you are on injections, the serum B12 test is virtually useless. You might instead want to start keeping a log of your symptoms each day so that you can track them. Some people feel worse at first while the body begins to make use of the sorely lacking vitamin. Others feel immediate benefit but notice symptoms returning when an injection has worn off. If you log your symptoms you may notice a pattern you didn't see before.

Also, B12, folate, and iron are all needed in good supply for the body to make blood cells. Have you been tested for folate or iron deficiencies? If you are also low in folate or iron it will likely take longer to feel a benefit from the injections and those additional deficiencies would also need to be corrected.

5 likes

Folate Deficient also flagged up

Hi Rhub are you in the UK?

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 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.

As Galixie says if you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

Be assured there is life after P.A. as I've had it for more than 45 years and I'm still "clivealive" and over 75.

2 likes

Hi, thanks for your reply, I have had low readings for over 3 years, suffered detox for alcohol 3 years (when the symptoms began), doctors never followed it up, I suffered Pleurisy in Feb this year (2017) looking back now, i think if they had looked harder, they would have sussed it, the pleurisy makes the PA worse, even though my reading is low they never said a thing, but, then, they only check for the most urgent things, not realising that in the background there's a lot of history but they havne't the time to check it out, they are too busy saving people god bless them but, if they had looked at my history they would have seen it, when i was in hospital, one minute i had a blood clot on the lung, then I didn't, I had double Pneumonia and Pleurisy. I eat everything containing B12 my body can't absorb it. I sleep all day, awake all night, can't switch round, have tried, just one little drop in the ocean of symptoms, its torture. I had a reading of 109 before the jabs, they said I can't be re-tested until December 17 (allowing 3 months to adapt to the treatment already administered) - I don't think its gonna work to be fair, I'm worried there's a more underlying problem, not yet picked up :(

I am also heterozygouswhich which means I am a Cystinuria Sufferer ; an inherited (genetic) disorder of the transport of an amino acid (a building block of protein) called cystine resulting in cystinuria (an excess of cystine in the urine) and the formation of cystine stones.

I have to follow a major non Calcium Oxalate diet, coupled with being dairy intolerant there's no wonder I hate food !

1 like

b12 is used for a lot of systems in the body - one is the processes that produce red blood cells so a common symptom is macrocytic anaemia in which your ed blood cells are larger and rounder than they should be. This takes about 4 months to completely clear when your B12 levels are raised (as new blood cells are only made when old ones die - and blood cells tend to live for about 4 months).

However, this is only one symptom - it is also used by the processes that maintain the protective sheath around your nerve cells, the processes that reset neurotransmitters, the processes that recycle some nasties into useful building blocks (homocysteine and MMA) - these systems will all adjust at different rates.

GPs and many medics are very confused and think that B12 deficiency is all about the anaemia so think that all they need to do is resolve the anaemia but actually it is a lot more complicated than that.

Whilst injectable B12 is likely to be prescription only (presuming you are in the US) but you may be able to get hold of high dose oral supplements ... and sometimes you can get injections at slimming clinics in the US - where it is being classed as a vitamin supplement rather than a medication.

2 likes

To my knowledge the proper levels of Hydroxocobalamin is only available via injection in the U.K.?

high does tablets and sprays that use hydroxocobalamin are availabe as vitamin supplements in the UK though the number of sources can be quite limited as every tends to sell methyl for sublingual tablets and cyano for high dose sublingual sprays

1 like

Well tablets are a bit daft if you cannot absorb B12? They're ok if you are just deficient but not if you have PA lol! That's the point if it were that easy I would take tablets and eat B12 rich foods. I was having this conversation with the phlebotomist at my GP practice that people think they have PA when it is just deficiency. If I take tablets with B12 or eat red meat, and dark green vegetables I feel like I've been poisoned and get inflammation of my stomach. I also have over 50 polyps and my stomach bleeds!

The last time I was given tablets was before I was diagnosed and I was in hospital after having a total hysterectomy. They thought I had a stomach infection as I had to be put on a drip. I told them to stop the iron tablets as I was put on them as a child and always ended up ill. Sure enough they injected me daily and I got better.

Even small amounts in vitamins do the same.

I do Top up with a spray under my tongue from weeks 4-6 but the dose isn't a fraction of my 6 week injections.

My daughter, who has it too, is a nurse and she will tell you that the dose we have is definitely NOT available to buy off the shelf or she would get it.

1 like

I eat all foods containing B12, my body produces a protein that destroys the Instrict Factor making it potentially unable to absorb this vitamin. Apparently, injections bypass the digestive system altogether and therefore when injected, go through the vein and into the blood stream that way. Makes sense, wish i felt better tho

Yes you are correct!! Thank goodness someone else with PA similar to mine.

You can also suffer from stomach conditions which prevents you producing intrinsic factor, which is something else that I have.

As you say you still feel grim and as I have said earlier the injections just prevent further damage and cannot really reverse damage already done.

Yes I use Cyano for sublingual but it's a fraction of the dose I have via injections

you can get high dose cyano in the UK - not the 50mcg that are offered by most chemists but they are available.

The stats on sublinguals are that on average just over 1% is absorbed, which means they are only marginally better than high dose oral which averages at around 1% absorption.

Although most B12 is absorbed in the ileum not all B12 is absorbed there and a small percentage - around 1% is absorbed elsewhere in the gut. And there are some reasonably large scale studies in Canada that have shown that treating with high dose oral is as effective for many people - something like 65% of those in the study preferred high dose oral as a treatment course. It may not be effective for the front loading but it can certainly be quite effective for maintenance.

Also, an absorption problem doesn't necessarily mean no absorption in the ileum - just significantly impaired absorption - so a long way .

However, given that there was a significant proportion of people who didn't find that oral worked for them it comes down to making choices available to people rather than forcing them down one route - which seems to be happening with insurance cover for those who are based in the US now that an oral tablet is actually licensed there for treatment of B12 absorption problems.

Well no one in the medical profession, including the consultants involved in studies with the PA society, believe that if you have true PA that tablets provide an effective treatment. If you can absorb B12 anywhere in your stomach then you could get your B12 from an improved diet and top up with vitamin tablets surely. Thus are suffering from deficiency not PA through not being able to absorb through the stomach which is the type I suffer from.

B12 sits in my stomach unabsorbed making me very ill. I cannot take enough orally to compensate just to stop me feeling as ill prior to my injections.

My levels are struggling with injection at maximum dose.

Another thing I have been told is that because I was without b12 for 46 years the damage done cannot be reversed my injections are to try to prevent further damage occurring

Well no one in the medical profession, including the consultants involved in studies with the PA society, believe that if you have true PA that tablets provide an effective treatment.

sorry but I do not believe you are correct. one of the presentations at the PAS conference a few years ago was from a GP that was trying to recruit patients willing to enroll to do a large scale study of the effectiveness of high dose oral. The PAS itself is not, I belief, against the use of high dose oral as a potential treatment. It is against this being forced on patients as a one-size fits all solution - as is the same with three monthly maintenance shots used in the UK.

Whilst high dose oral tablets (1000mcg+) obviously don't work for you (and are unlikely to be an effective way of resolving the initial deficiency) they are effective for some people - possibly even a large percentage of people, as a maintenance regime.

This forum is about sharing experiences and also recognising that what works for one person does not necessarily work for another ... and that also means that just because a treatment didn't work for one person it doesn't mean that it won't work for everyone.

The stats on sublinguals - which a lot of people see and find effective - are actually that the amount absorbed is only slightly higher than that absorbed from high dose oral by passive absorption (ie outside the ileum but in the gut), implying that for those that find sublinguals effective most of the effect is actually coming from passive absorption not through absorption in the membranes in the mouth.

The amounts being used in high dose are 400+ times the amount that someone would take in normally in their diet.

The first treatments for B12 deficiency were actually oral treatments.

If you wish to discuss this further I suggest that you open up your own thread.

1 like

I diagnosed with b12.low 3 months ago .. I m on injection my b12 was very low .. I had b12.low 1 and half year ago.. And diagnos wth low 3 mnths ago .. Since i feel Dizzy 24/7 off balance ,Neck pain and pain in back of my scull .. Headche , heavy leg ,dry mouth ,musscle stiffness ... Its now the 3 mnths but i dont feel much better.. Anyone also feel 24/7 off balnce dizzy feel ..it really irritates.. Sorry for my poor english ..i m from india a village girl .. Plz support me

2 likes

It might be better to post a new thread, this may get missed by the forum. If you write your own post I'm sure that you will get the advice and support you need.

Include any blood test results you have and the ranges (usually at the side of your level) this will help other users to advise you.

2 likes

You must feel very isolated!! We are special people and we support each other. Thinking of you keep safe and well.

Meditation and breathing exercises can help and cost nothing to do if you get a minute to yourself in a quiet place?

1 like

Hi Rhub,

It's helpful to know which country you are in as patterns of B12 treatment/guidelines vary from country to country.

PA/B12 Deficiency Support

Have you considered joining PAS (Pernicious Anaemia Society)?

It's based in Wales, UK but has members from around the world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

PAS can offer support and information. PAS members can access details of local PAS support groups. There are several PAS support groups in UK, one in USA and one in Australia.

pernicious-anaemia-society....

B12d.org has support meetings near Durham I think.

b12d.org/

There is a B12 group in Holland "Stichting Tekort" which I think has support groups in Netherlands.

stichtingb12tekort.nl/helpe...

There is a USA B12 website called "B12 Awareness"

b12awareness.org/

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 B12 guidelines.

"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 book about B12 deficiency with lots of case studies.

More B12 info

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...

UK B12 blogs

There may be stories relevant to you on Martyn Hooper's blog.

martynhooper.com/

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

b12deficiency.info/

UK B12 documents

1) BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

2) BMJ b12 article

bmj.com/content/349/bmj.g5226

3) BNF British National Formulary Chapter 9 Section 1.2

Details of UK B12 treatment

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

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

"my blood results have flagged this up for over 3 years"

Do you keep copies of all your blood test results?

In relation to B12, I look at B12, Folate, ferritin and full blood count (FBC).

Access to Medical Records (UK info)

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

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

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

I am not medically trained just someone who has struggled to get a diagnosis.

United Kingdom

You can get better with the injections, although it may take some time because there is much damage to be repaired. You may need more than the standard 2 month guidelines for injections in the U.S. I was fortunate that my doctor prescribed injections 2 times a week for life. Also important: this is an autoimmune atrophic gastric condition (AAG), and you have had anorexia. Do read information from the Pernicious Anemia Society on AAG, sometimes called Autoimmune Megaloblastic Atrophic Gastritis, AMAG (to acknowledge the anemia). Lack of appetite can be one of the symptoms. My doctor warned me to learn to eat what I could or I would become anorexic, and my appetite remains dicey after losing 25 pounds. Many patients have unpredictable digestive or intestinal difficulties. Not all gasterontologists are up to date on this, and doctors in the U.S. often still look at it as just a blood disorder. It's very important to inform yourself with information from the Pernicious Anemia Society. It's sad to be at such a difficult point, but treatment can get you better. Please be encouraged.

1 like

You lucky thing!! Twice a week? Lucky here if you get it once every six weeks. I'm lucky as my levels are so low that I have it every six weeks

I've suffered anorexia since i was 12 years old! I'm 40, although I am able to deal better now, I still have strange eating habits, I am married with 2 kids who eat me out of house and home! I never ever reiterate anything about food intake, its all down to tooth decay (!) If you are in my boat you will get it! My daughter is a semi-pro swimmer, i cannot advise to eat more than anything to her and she does, I know i'll never be cured, you learn to deal with Anorexia, i'm a professional at making a meal look like you've devoured it! My husband of nearly 20 years tells me how many times the fork has been to my mouth sadly but he only cares ! There is a link somewhere to all of this. When you completely starve the body it finds a way to survive, it does come back and bit you on the ass later in life - as I have found out sadly - my mum says, "sorry but I told you so" :(

I do class myself as a survivor but to be a survivor i've fought all my life, you get tired of it sometimes, its exhausting sadly, killing yourself at an early age, only comes back to get you later in life, as I've learnt! Can't change the past, have to find a way to carry on with it all

Umm that's not insomnia - Insomnia is the inability to sleep, the staying awake 3 days straight and feeling like crap but STILL not being able to sleep.

Sleeping too much is definitely not insomnia - sorry.

Quote Wiki:

"Insomnia, also known as sleeplessness, is a sleep disorder where people have trouble sleeping.[1] They may have difficulty falling asleep, or staying asleep as long as desired."

How often are you going to have your injections? I was diagnosed with full PA 9 years ago and have to have my injections every six weeks and my levels are only 303 but I lack intrinsic factor.

Sorry to say this is my life really. Don't sleep much until the sun comes up. I have nerve damage, spinal chord disease, stomach problems, migraines with auras and I grow large tumours all linked to my pa. I even have a stupid thyroid, had half of it removed because it's insane!

My skin is now quite thin and my mouth bleeds PA is a serious disease and has killed many of my family on my mothers side.

My daughter also has it but luckily hers was discovered in her late teens. I was 46 and I'm told I was lucky to be alive as my reading was 33. That's how I feel lucky! I do get weird ideas in my head after a month has passed.

I feel like I haven't long to live and or there's no point living any more and I feel vulnerable it's so strange. But I've survived a lot and value every day. I'm hoping to study for an MA in forensic Physiology next year, from home part time but I'm hoping to work from home even if it's just a few hours a week?

Please hang in there it's early days for you, you will find the symptoms come and go depending on your levels but they won't. E cured instantly or permanently. It all depends on whether your just deficient or full PA and how long you have had it prior to diagnosis?

I have had it from birth that's why this has happened to me. There's a lot about this disease that they are still finding out about.

Rhub, I am closing this post to new responses as I it seems to have been hijacked by a discussion that I don't feel is entirely appropriate or helpful to you as the original poster.

2 likes
The ability to reply to this post has been turned off.

You may also like...