Negative intrinsic factor, what does this mean?

[margie70]

I just received the results of my test it came bk negative, does this mean I don't have pernicious anemia im kinda confused!!!

Does anyone have any more information please.

[Jo5454]

Hi margie, no it doesn't mean you don't have pernicious anemia. It apparently gives false negatives 50% of the time, so I suppose technically speaking if someone with it is tested 100 times it would only show up 50 times! Not the most reliable of tests!

I've been tested once and it was negative and my dr said that I don't have it, but had to remind him that it's not reliable and I could have...

Take care...

[Polaris]

This is what Martyn Hooper of the PA Society had to say (about CFS/ME) in the House of Lords in June of last year:

"Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA."

If you haven't already seen it, you could write or email the latest BMJ research document to the surgery. This is given below and gives up to date guidance on treatment. it might also be worth contacting the PAS, who may get actively involved if your GP continues to ignore the symptoms of your very low B12. They may be able to write to the practice manager and the Medical Director of the Regional Health Board but will first give surgery a chance to order the correct treatment.

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document.

Adequate treatment with injections and supplements from the outset is essential to avoid permanent neurological damage and many doctors fail to realise the importance of this:

stichtingb12tekort.nl/weten...

"The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

Best wishes for a successful outcome Margie

[margie70 in reply to Polaris]

Thank you so much for the information I really appreciate it, this really does have a major impact on ur health doesn't it.

Thank you

[Polaris in reply to margie70]

Absolutely. As you know, there's a small window of opportunity before permanent neurological damage sets in, which is why it's essential to inject without delay and continue as set out in BNF guidelines 'until no further improvement'.

Sally Pachlok (Could it Be B12?) recommends covering all bases with injections and supplements.

I'm wondering, if B12 Spray not having much effect, whether Jarrows Methylcobalamin 5000 mcg, might help - good reviews on Amazon for neurological symptoms. It definitely brought my memory back when I began taking 2 a day.

[scorpiojo in reply to Polaris]

can you take 2 even it say 1

[Polaris in reply to scorpiojo]

I'm not "a qualified healthcare practitioner", Scorpiojo, so can only say I personally am just dissolving my second one of the day under the tongue, and have been experiencing improved memory and other symptoms since. 'Superior Source' supply B12 in 10,000 mcg I believe so I imagine it must be a recognised dose.

You cannot overdose on B12 but, if it is a worry, you could perhaps get 5000 and add 1000 mcg gradually to see if it makes a difference?

[scorpiojo in reply to Polaris]

I have solgar in-between si at 5000 so will double up and a b complex thanks 😊

[margie70 in reply to Polaris]

Thank you for your support, it's gotten really bad again, I cannot bare my clothes touching my skin accompanied by a migraine type headache . I really don't know what to do with myself I also been experiencing severe upper abdominal pain. I'm not sure wat to do, can someone please advise xxxxx

[Polaris in reply to margie70]

Do you have someone close to call who can support ?

[clivealive Forum Support]

Hi margie70 flitting back through previous posts this "started" with a B12 reading of 152 and you were having injections. I am not a medically qualified person but would be interested to know why your levels were low in the first place.

On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. 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 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), 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.

"

Do you fit any of the criteria listed above?

[margie70 in reply to clivealive]

Hi, all the info I have is my mum used to hospitalised with a problem with her white or red cells it used to make her very poorly. I had a iron deficiency about 6 months ago, I don't know when this started but my GP has told me on several occasions my red cells were becoming enlarged then I had surgery in April for exploration of endometriosis and kinda never felt well after that. My GP ordered a range of blood tests that's when I was called bk to the surgery to be told I needed injections for life as when my b12 was tested in 13 it was within range. Don't know if this helps.

[clivealive Forum Support]

What anaesthetic was used during your surgery. If it was nitrous oxide this is known to radically deplete B12 levels and may well explain your extremely low test result.

Was it really 13 or do you mean the year 2013. I'm sorry I'm a bit confused.

[margie70 in reply to clivealive]

2013 sorry, I was given general anaesthesia in the back of my hand.

[clivealive Forum Support in reply to margie70]

Hi margie70 Just so I can get my head round this - you wrote "I had surgery in April" - that was this year?

"My GP ordered a range of blood tests that's when I was called bk to the surgery to be told I needed injections for life" - was that when the B12 level was 152 and after your surgery?

You say "as when my b12 was tested in 13 it was within range". Do you know what the level of that test was in 2013?

Whether or not you have P.A. or B12 deficiency the treatment is virtually the same and in view of the comment you were "told I needed injections for life" it would appear that your doctor has come to the conclusion that you have an "absorption" problem and that you cannot get B12 from your normal diet.

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,

medicinescomplete.com/mc/bn...

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

The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological

symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment.

I'm not a medically qualified person (just a fellow sufferer) but I'm guessing that the above is the regime your doctor has prescribed you and hope you will quickly feel the benefit from the injections. Please just ensure that your Folate levels (B9 or folic acid) are good and maintained.

I wish you well for the future.