Do I have Pernicious Anaemia?

My b12 was just 76 and I am di@y and tired all the time

I initially went to my Dr because I thought I had arthritis due to joint pain in my fingers and toes. (I also have tingling in hands/feet, fatigue, dizziness, brain fog and short term memory issues, but I was attributing all that to peri-menopause!).  He rain a bunch of blood tests, including autoimmune tests.  He called me 3 days later to tell me I was B12 deficient, at 182!  (He discovered it based on his hunch...he's a great Doc!). So I do injections (daily for 1 week, then 1x a week for a month, and then once a month for life). I've noticed that my joint pain in fingers/toes has greatly improved, but not much else.

I asked him why I became deficient, and he thinks its because of my alcohol consumption (2 glasses of wine daily, which doesn't seem too much to me!).  

SIDE NOTE 1: I had major surgery 6 months ago, with blood hematomas (large bruises) lasting a month.

SIDE NOTE 2: In 2013, I was serverely anaemic (7.2 hemoglobin) due to heavy menstrual periods, and I had to have a blood transfusion.

My blood test results after my transfusion were:

Vitamin B12 425 pg/mL 

Folate Serum >19.9 ng/mL 

Ferritin 5 ng/mL (this is very low)

Iron, Total 29 ug/dL  (range is 35-155, so I was very low)

Iron Saturation 7%  (should be 15 - 55 %, so I was very low)

I added in those notes to give you a better history, and I wonder if either of these issues caused my B12 issues later on.

My questions are:

1.  By definition, Pernicious Anaemia is defined by "no absorption of B12 due to loss of IF", right? So does that mean I DO have it?

2.  Are there other blood tests he should do? I was thinking he should do:  IF, Folate, Ferritin, and Iron saturation blood tests... what do you all think?

Thank you for any advice!

Lynn

Hi

Can u plz tell me if the dizziness and brain fog have gone. I am done with almost 25injections I still am very dizzy

No, I still have that too!

I am constant dizziness and off balance all the time. My ferratin was also low 15.5. And check for vit d also mine was just 15.

My doc says dizziness is not coz of b12deficency. I am lot worried as to what's wrong again.

How many shots r u done till date. My b12 when checked yesterday was above 2000 should I stop taking shots.

I just started my shots, I've had a total of 8 injections so far.

2000 is high, I would think your Doc would have you stop doing the shots and be re tested again in 4 months.

But, you need to ask your Doc!!

Oh is it. Thank u. But non of my symptoms are gone. I am too weak. Dizziness is driving me crazy.

Are you taking other meds too? It could be side effects from those...

No just alternative days I take vit b12 shots. Along with 5ml of dexorange syrup for iron twice a day and b complex tablet.

Dizziness is a symptom of so many diseases, it could be almost anything!

(high blood pressure, heart disease, etc) Has your Doc ran other tests for you?

My bp is normal. And I am still 30yrs old do u think I might have a heart condition

There are several reasons for becoming Vitamin B12 Deficient.

Can you "identify yourself" fro the following list other than the ones I highlighted?

"Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption including the contraceptive pill..

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency".

If during the surgery you had you were given "nitrous oxide" that could have depleted your B12 and your alcohol intake will affect its absorption.

As to whether you have P.A. I am not a medically qualified person, however, you say "My stomach is not making IF so I can't absorb it". (B!2)  If that is the case and with your symptoms, then in all probability  you have P.A. but that is for your doctor to diagnose.  However the treatment for B12 Deficiency and P.A. are pretty much the same so at least your doctor is moving you along in the right direction.  One thing you need to keep healthy is your Folate level as this is "used up" processing the B12 you are having injected.

In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ilium.. Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ilium. Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ilium after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.

Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia". In addition it can happen that we produce "Parietal cell Antibodies" and "Iintrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.

Finally, it is not uncommon for some neurological symptoms to appear to get worse before they get better. Take this as a sign that the B12 is repairing the damage done to your nervous system.

I wish you well for the future but be assured there is life after P>A. as I'm still "clivealive" after 45 years and aged 75. 

Thanks for all that info Clive!

I do have a few of the reason you mention:

- I do have mild IBS  

- I was anameic 3 years ago, but not anymore

- I do like my wine at night, but I'm not an alcholic. (2 glasses/night)

He thinks its a combo of the wine consumption over the years and the IBS. But that's just what he "thinks", I haven't been formally tested for P.A.

For me, I like to now the reason, not just a guess! Also, what about the Gastritus angle, could it be a Pylori infection? I have a PPO, so I can ask for tests and he never argues. So, which ones should I get?

I was thinking:  IF, Ferritin, Folate, Pylori to start.  Any others?

OR, by simply knowing I am B12 deficient, is that all I really need to know? I don't need to know the reason why? Is asking for the extra testing being too picky?  By taking the B12 shot for life my solution, or can something else go wrong if the P.A. is left undiagnosed?

Thanks again!

Lynn

 

Personally I would be happier to have a definite diagnosis pinned to my records especially if you do have P.A. as then you would be guaranteed to get injections for life.

As I've said I'm not a medically trained person and when I was diagnosed in the early 70s they used the "Schilling" test which involed drinking a radioactive substance.  Sadly that test is no longer available (I probably still glow in the dark) 

I think you need to ask to at least be tested for intrinsic factor antibodies and parietal cell antibodies. but this is way above my payscale.

Have you considered joining the Pernicious Anaemia Society?  It costs but £20.00 for a year's membership, you can speak to them by phone and they will even intercede with your doctor if necessary. The chairman, Marty Hooper (who has P.A. himself) has written an easy to read book "What You Need To Know About Pernicious Anaemia & Vitamin B12 Deficiency" which can be bought online.

The problem with not getting a definite diagnosis for P.A. is that should you move or change doctors with just "B12 Deficient" on your record your new doctor may require you to go through all the tests again or even suspend your injections.

Clive

Thank you so much Clive for all you help You've given me the info I need to be my own, personal health-advocate in this!  

 

hi how are u?i hope ur feeling better now..i do have those symptoms u mentioned in ur post..i experienced like i have mobile on my whole body on vibration mode..tingling of toes and fingers,sore tongue that come and go,brittle nails,bowel incontinence mostly constipated,brain fog that i need to think first for the right word or for the right name of certain thing,dizzyness,muscle pain like pins and needles from place to another..it started august last year,i thought i had urinary infection because of the tickling or pin like sensation in my left lower side of abdomen.it went to doctor and had urinary test though i dont have pain in urinating or i dont exert effort when urinating..i had my result for the urinary test it was like 0.2 out of 10 from their scale but the doctor gave me antibiotic for 5 days,had water therapy and cranberry juice and capsule..but then still the pin like sensations was still there and it radiates to my back to the other side of stomach..the doctor then asked for another urinary test and was already normal..he then asked me to do ultrasound in my ovary which hw thought might be related to it..i did,and they found out i i have polycystic ovaries..i was then referred to ob-gyne,did another ultrasound but it came out normal and she said and if i have polycystic ovary pin like sensations are not related to it..so,i was dis appointed because i dont know what else to be done to find out whay i really have..i was feeling so stressful and depressed that time that i have those pin like sensations reaching to my back,my shoulder and neck whic my doctor thought maybe of my bones,referred me again to a bone dr..xray was done was just because of my muscles,its over stretched that causes pain..i was given celebrex and pain reĺiever..vit d test was done,normal..but still i was given supplement only for 1month..as days goes by,another symptoms came up, mouthsore that come and go,brittle nails,sore tongue,feeling dizzy and tired the whole day and it was thr vibrations on my legs,arms,and on my back that worries me a lot.i googled my symptoms and it showed up in vit b12 deficiency..i decided to buy tablet form vit b12 5000mcg,after almost a month of taking i can feel that vibrations were not that strong and prominent,but tingling of my hands or fingers still visible..i asked again my doctor for vit b12 test,thanks he did order for the test and with their range of 110-800 pg/ml,mine was 297..still normal but low..i told him that im reading some forums that if below 400 or 500 injectable is the best way to deliver vit b12 to our system,but he insisted that i dont need injecrable since im still in normal values he then gave tablet form..bad news 8 felt lije im not accepting vit b12 in tablet form because i always have acid reflux,so,look for sublingual vit b12 but i cant find good brand..now,im experiencing numb like in my toes and fingers,in my knuckles and ind my toes,my both feet are sore,and maybe because of my dizziness i feel like my eyeglasses needs to be changed because of a double vision,i did have my eyeglasses and eyes rechecked but was on the same grade and my optometrist asked me if i have anemia because it could be because to anemia..

i hope u guys can give me some good vit b12 sublingual brand that i can purchase online..i was thinking to have injectable form and have my nurse friend do it for me..

im sorry for the long story..

anyways,im currently working in qatar and filipina..im just trying to have some advices or opinions what else to be done though i know most of u guys are from uk and us..

thanks!

Hi there, Mariechell93070, I'm sorry to read about all your problems

Can you get hold of "B12 Boost", a sublingual spray of methylcobalamin? It's readily available over the counters of the larger chemists here in the UK but would easily fit inside a padded envelope and weighs next to nothing if you have someone over here who could send it to you.  It costs around £12.00 for about 40 days supply.

You also need a healthy Folate level to process the B12 so get that checked and supplement with folic acid if it is low.

I wish you well.

thank u for ur reply..

isnt it available in amazon or online?

thank you!!

Hi

I too have same symptoms. I too feel like I am sitting on a phone with vibrator on. And I feel like I am walking on a boat. I am dizzy all the time. And my legs and hands feels like jelly.

Do u have any idea as to what is the recovery time. Do u have tenors that r visible outside?

my vibrations were gone maybe 2wks when i started taking b12,but,4 days back i can feel its there but not as strong as the previous one..i was thinking it came back since i always have the acid reflux that causes me feel like i want to vomit..and i forgot to mention i have this pounding breathing that is so loud that i can feel when im on bed,even my carotid pulse i can feel it very strong on my neck..insomnia is always there in a week..my week wont be complete without it..

sad thing is if im trying to talk to my friends they are all laughing..they dont understand what im going through..i just kept on telling them i just hope it wont happen to u guys probably u wobt understand what do u really have..

Hi

I am off balance all the time and internal tremors are gone now but walking is a problem.

Mine was 76 I have no balance while walking very tired and scared that I might fall down.

Yes it is online just Google it

An unsteady gait is a symptom of P.A.  I've taken two bad falls this year, still have the scars to prove it and now use a walking stick.  It's almost as if my brain doesn't know where my feet are.  I just need to be more careful.

There is no fixed time for recovery of all the symptoms because no two people are the same and a lot depends upon the extent and longevity of the damage done to the nervous system before diagnosis and treatment.

In my case it was 13 years between stomach surgery at the age of 17 and P..A. diagnosis at 30 by which time I was a walking Zombie and that was 45 years ago.

However, be assured - there is life after P.A. as I'm still "clivealive" at 75 and have generally kept quite "fit and healthy" apart from getting old.

I can really sympathise and empathise with over the way people don't understand how poorly you can sometimes feel.  

I "lived" with P.A for nearly forty years in complete and utter ignorance of what it was all about as I didn't know anyone else who had it and neither any doctors or nurses down through that time ever asked me how I was feeling or coping with it so I just had the injections and waited for the next one.

Then six years ago I joined the Pernicious Anaemia Society and learned that NO, I was not the only person in the world who suffered a return of symptoms in the run up to my next injection.... and the rest is history.

Sadly it's not just friends and colleagues who don't understand.  What prompted me to seek knowledge was my own in 2010 doctor telling that the sympoms I was having couldn't be the P.A. because I was having the injections - silly man...

Get yourself a walking stick as I've had to following two falls this year.

It's as if my brain often doesn't know where my feet are.

thank u for ur reply..

my doctor wants me to stop taking vit b12 after my 3months and i will have my vit b12 tests again but im afraid if i will stop taking maybe all my symptoms will come back knowing that i still have even though im still on maintenance..

and thank u coz i feel that i have found a support system thru this group in which i cant find thru my friends who never understand my situation..

godbless!!

Do I have to walk with a stick lifelong or is it reversible changes.

Measuring your serum B12 after supplementing is pretty meaningless unless the result comes back very low which would indicate an absorption problem and reading back I see you sufer reflux which suggests tummy troubles. Are you on medication for it or taking antacids?  The contaceptive pill can affect absorption of B12.

Am I right in assuming you are taking tablets - not having B12 injections?

No - if you can get the frequency of your B12 and balance of your Folate levels right most symptoms will be alleviated.

In my case some of my "unsteadiness" can be due to my age (75) and natural clumsiness and I only suggested a walking stick if it gives just that little bit more confidence.

Thank u for replying

hi,

yeah im on sublingual b12, i insisted to my dr about b12 injections but he said its not that necessary sinve im still on normal range..but i wanted to give a try doing it to my own..i will try to partner my 12 with folic acid..i hope i will have a better responce..

dr also gave me tablet for my acid reflux but as much as i wanted to i dont take it unless i really feel i need it..is there any option othet than taking medicine for acid reflux?

thank u so much for ur reply

Hi,how are u?

Im happy that ur internal tremors are all gone now..im curious how,what have u done with it..mine is back now i can feel it when im on bed.

actually i had b12 injection last week only 1 time and my doctor said if it wont go i will be referred to a neurologist,he is thinking for ms..

and now i have always pain or i font know if head ache or what..

im thinking maybe its just an effect of the injections..do u think it is?

You say your doctor has given you just one injection and you still have neurological symptoms.  

Your doctor should be prescribing B12 in jections in accordance with the BNF guidelines as follows

Treatment of cobalamin deficiency

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks. 

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement".

I see you've tried sublingual B12 and you are also on tablets (probably lansoparazole?) for reflux.  

Those tablets will lower your stomach acid and make the sublinguals largely ineffective

List your symptoms and present them to you doctor and ask for treatment as highlighted above quoted from a book he should have on his desk.

Yeah im on sublingual b12 and last week i had injection but no more follow up after that.im not taking everyday with that omeprazole everyday im avoiding it actually,im trying some remedies for my acidity..

Im just afraid because my feet starts aching that hurts me a lot when standing for a longer time,and my joints in fingers are feeling numb especially if im sleeping..

Im thingking to look for another doctor again someone who would really understand me..

Thanks for replying