B12 injection.

[Gardeningbuff]

Hi everyone. I posted yesterday about confusing results. Well long story short. I went to my GP and he said I need B12 as well as the iron infusion.. Injection next week. Result! I presume that means I am now one of the gang and it is pernicious anaemia then? Answers appreciated from you experts.

[clivealive Forum Support]

Hi Gardeningbuff although treatment for P.A. and Vitamin B12 deficiency is virtually the same the "causes" are different.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

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, or infections such as h-pylori that can interfere with B12 absorption.

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), Pancreatic insufficiency, 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.

Looking down the above list can you "see yourself" among any of those people?

The symptoms of P.A. are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

To determine whether you have P.A. you will need to be tested for Intrinsic Factor Antibodies (IFA) but sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have P.A. However, a positive result is a sure-fire, 95% certain indicator of P,A.

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

I wish you well.

[Gardeningbuff in reply to clivealive]

I've got a lot on that list. Over 60, vegetarian bowel surgeries using ppi's , definite history of anaemia, and just today my daughter has been diagnosed with b12 iron deficiency anaemia. Maternal aunt had pernicious anaemia. So should i get tested for the intrinsic factor antibodies? I had all the neurological symptoms way before all of these surgeries, and severe nausea ( about 2 years ago) my daft gastroenterologist couldnt work it out. I got used to the symptoms, the nausea resolved most of the time but i think my surgeries have brought it all to a head. My hair is really affected now. Always been thick but now noticably thinning. What do you think?

[clivealive Forum Support in reply to Gardeningbuff]

You could ask to have yourself tested for Intrinsic Factor Antibodies but bear in mind it's not a very accurate test,

Have a look at the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

I see your doctor has agreed to give you "a B12 injection" but really with your symptoms he should be following the above guidelines i.e. "loading doses until there is no further improvement" etc.

[Gardeningbuff in reply to clivealive]

Sorry, i should have said 3. I didnt realise its 3 injections. I'm so confused ( brain fog) lol. Can i ask, in your opinion, and i know your not a medical professional, would you say its pernicious anaemia due to having the symptoms for so long?

[clivealive Forum Support in reply to Gardeningbuff]

Here is an extract from Martyn Hooper's book "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" which explains the mechanics of P.A.

"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 Ileum..

Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ileum.

Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum 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 "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.

"

On the one hand your "Over 60, vegetarian, bowel surgeries, using ppi's , definite history of anaemia," could all point to an "absorption" and or "dietary" cause for a Vitamin B12 deficiency whereas on the other hand P.A. may "run in families".

The three injections you mention may not be enough and are not what the N.I.C.E. guidelines recommend for someone with neurological symptoms i.e. "Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."

It is also 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

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

As I said before, regardless of whether you have P.A. or B12 deficiency the treatment is basically the same.

I hope this has helped you to understand and will enable you to get your doctor to follow the guidelines.

Kind regards

[Gardeningbuff in reply to clivealive]

Thank you . It has helped. I will do some reading and research and discuss it with my doctor. Thank you so much.

[Miss-guineapig]

Welcome to the gang Gardeningbuff. People on this site are so very knowledgable and I have Learned so much from them x

[Gardeningbuff in reply to Miss-guineapig]

It is so great. I have gained so much information, and my surgeries over the past year have been so stressful, and now I'm getting well supposedly, this comes along, although I think it's always been there. But I am so grateful for this. The answers are always quick and helps my stress levels! Thank you Miss-guineapig.

[Wowo23]

Hi Gardeningbuff. I was diagnosed with autoimmune PA a year and a half ago. It was my oncologist who was the first to run a b12 test. I was so sick and had lost my right leg to bone tumors. My b12 was 93. My primary doc decided to run instrinic factor test and results were alarming. Normal range 0.0- 0.1. Mine was 98.00. I was diagnosed and told b12 shots for life. I had the loading doses and now inject twice weekly at home. My symptoms were crazy. I couldn't think straight, angered easily(not like me at all) I couldn't stand up without falling(not good for an amputee) I couldn't think of simple words, constant ringing in my ears and body tingling. I still have ringing in my ears and body tingling. I'm not sure they'll ever go away. I'm still working out the amount of shots weekly feeling I could benefit every other day if not daily. I would definitely ask for the IF test. So you know if you're dealing with PA or low b12. I feel any doc that has a patient with low b12 should automatically test IF. I hope your doc listens to you, is up on treating PA and low b12 and orders the IF. Best of luck

[Gardeningbuff in reply to Wowo23]

Oh goodness you have been through so much! That tingling is horrible isnt it? And I've been so irritable. My hair is really thinning noticably too. I will definitely ask about getting the if test. Thank you.

[Wowo23]

Yes, tingling is awful. I honestly thought these feelings were from my other medical problems and am glad I found out it wasn't. I did notice thicker hair about 6 mos after starting reg injections. I also take folic acid and vit D. I finally feel more normal these days.

[Gardeningbuff in reply to Wowo23]

I cant wait for normal. I wondered what the heck was going on with me.

[Wowo23]

I'm so excited for you to feel normal again!

[Gardeningbuff in reply to Wowo23]

Me too. Its been a while! 😊

[Wowo23]

I had no idea what was wrong with me. Had never heard of PA. Funny how you learn quickly when you need to

[Gardeningbuff in reply to Wowo23]

My Aunt had it when I was a child back in glasgow( I'm in Australia now). My daughter has it too. i hope you are ok now and your health problems are fixed.

[Wowo23]

I'm on my way. Just got a prostheic leg and am walking for the first time in years. Beyond happy I'm finally at this stage. When I think back, I wonder how I made it with PA and all else

[Gardeningbuff in reply to Wowo23]

That's great to hear.