B12 levels

[Oscarb65]

Could anyone give me some advice. 2 months ago I received 6 loading doses of b12. My b12 was 130 prior to this. My b12 is now 450 and gp says this is normal no further action. I am very tired and have burning legs and feet and cramps which keep me up all night. I've also now have alopecia. Surely this isn't normal. Any help please

[wedgewood]

Did your GP diagnose the reason for your low B12 ? If you have Pernicious Anaemia, you need B12 injections FOR LIFE . The fact that your symptoms are returning now that you have not received follow up injections , would indicate that you do have P.A. Pernicious Anaemia is the most common reason for B12 deficiency . P.A. Is an autoimmune condition . The body produces antibodies that attack parietal cells in the stomach that produce stomach acid and the Intrinsic Factor , both of which are necessary for the absorption of vitaminB12 , which is found only in meat , fish , dairy products and eggs , Because of this P.A. patients need injections of B12 , as tablets are not effective enough. There are other reasons for P.A. A vegan , or very strict vegetarian diet . Long standing use of Proton pump inhibitors e.g, Omeprazole , Certain Diabetes drugs e.g. Metformin . Fish tapeworm ( consumption of raw fish . ) infection of Helicobacter Pylori . Certain stomach surgeries . But your GP should have looked into those possibilities . The is a test called the Intrinsic Factor antibody test , but sometimes the antibodies do not show up in the test in P.A. patients , leading GPs to believe that P.A. is not present . This happens about 50 % of the time .

Do go back to your G.P , and say that your symptoms are returning . Your B12 level has no importance , and does not need to be tested now that you have embarked on injections . You need more injections . Best write a letter . There is very poor knowledge of P.A. in the medical profession . Most , if not all of members of P.A.S. are obliged to self inject because we cannot get our B12 injections regularly enough . We all have differing needs . I need to inject weekly . Folic acid ( vitamin B9 ) is also important , as it works with B12 A modest 400 mcg tablet daily is ideal , but not 100% necessary if you eat plenty of folate food — green leafy vegetables. Best wishes ,

[Nackapan in reply to wedgewood]

Just to add your levels were not very high after Injections. Usually alot higher. So get more organised with your doctor as suggested.

[Oscarb65 in reply to Nackapan]

Thank you I have had antibody test which was negative. So I was told didn't need injections. No further investigations have been made. I have other autoimmune problems vitiligo alopecia and psoriasis do you think this is relevant. Thanks again

[Nackapan in reply to Oscarb65]

Mant say autoimmune conditions dint cone as one only. So yes I think relevant.

If you felt better from injections push for more. Or ask for an explanation why they helped and symptoms returned once stopped??

Thete is not a test for PA that is totally reliable I'm on injections without a PA diagnosis.

Symptoms and your responses to b12 Injections is what is important .right now.

[mcg-woo in reply to wedgewood]

My blood work showed B12 at 480 after two monthly injections and daily sublingual B12 supplements from initial b12 of 282. It was at this point that I discontinued injections. My gastroenterologist advised through a nurse on the phone that he believed that I would have to go back on injections when he was informed that I had also supplemented orally as well without any further explanation, so I didn’t understand the gravity of the situation. My low B12 was discovered through testing because of long term proton pump inhibitor use, after having uncontrolled gastro symptoms despite medication. I was convinced the PPI was to blame so in my mind if I could get off the medication and supplement b12 orally, then I was cured. Unfortunately, this was not the case and three months later I was so sick that I could barely drive myself to see my GP. My mind wasn’t functioning properly and I had convinced myself it was the type of oral b12 I was using or amount so I became obsessed with adjusting dosages or trying different types while becoming more and more symptomatic. I finally became so miserable with many neurological symptoms—dizziness and my mental health was in bad shape without any prior problems—that I sought treatment from my GP. My GP did not check my B12 levels so I don’t know how low they were because she said the fastest way to help me was to give me a b12 shot on the spot. I began to notice significant improvement three days later but it was a long road to recovery. I received weekly B12 shots for a while after. I was negative for IF antibody but both doctors agree shots for life and I most likely have PA. My warning to you is that without additional B12 injections, you are likely going to get sicker and you will get there much faster. It took a little less than 3 months from my last injection to become very ill without them. Please don’t delay and push for the treatment you need even if it means getting another doctor. The more severe the symptoms, the longer recovery takes and the harder it is to tolerate the b12 shots until things improve. I hope you find the help you need. It is so frustrating that so many physicians aren’t better informed. I wish you the best of luck.

[Sleepybunny]

Hi,

"Thank you I have had antibody test which was negative."

It's possible to have Antibody Negative PA.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Has GP considered other causes of b12 deficiency eg diet, coeliac disease, crohn's disease, some drugs, damage to terminal ileum (where B12 is absorbed in gut), fish tapeworm infection and others?

Do you eat plenty of B12 rich food eg meat, fish, eggs, dairy, foods fortifed with B12?

If yes then diet as a cause is less likely and more likely that there is an absorption problem in the gut.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in above link is about being symptomatic with an in range serum b12 result.

More B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I am not medically trained.

[Cherylclaire Forum Support]

"Other autoimmune conditions": yes, relevant. Autoimmune conditions quite often are accompanied by others. There are many, but include vitiligo, alopecia and psoriasis. Also autoimmune thyroid conditions are closely linked: Hashimoto's and Grave's diseases.

In a Pernicious Anaemia Society survey, respondents results regarding co-exiting medical conditions included:

vitiligo : 13 %

psoriasis/ eczema/ acne : 28 %

alopecia was not mentioned specifically in this survey - but hair loss generally is listed as a B12 deficiency symptom and alopecia is another autoimmune condition.

The results above are taken from Martyn Hooper's book: What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency. Martyn Hooper is the founder of PAS and has both PA and psoriasis. He had the Intrinsic Factor antibody test three times before getting a positive result, and so a pernicious anaemia diagnosis.

Also worth looking at family history. My immediate family have vitiligo, psoriasis and Grave's disease - until 5 years ago, I thought I was the lucky one !

I think you should go back to your GP.