Pernicious Anemia

[babs67]

Having had b12 injections 3 monthly for 3 years for Pernicious Anemia I am told by my gp that I don't have Pernicious Anemia my levels run 1000 but I still have all the symptons what shall I do.

[pvanderaa]

Are you also supplementing with folic acid? B12 needs folate to do its job. 5 mg is the max daily prescription.

I take methyl 5000 mcg 2x sublingual tablets before meetings to clear my head and to think. Or just to fill in between injections when I feel low.

Keep a log book of your symptoms and try to assess a severity score for each of them. Your own scale is fine. Monitor how your symptoms react. Some are due to the deficiency and some very similar ones are a result of getting the b12. It is all a matter of timing.

Food and meds also play a part. There is usually a 3 to 48 hour delay because the gut is involved. When you have a symptom, look back in your log for a possible cause. Are you gluten and dairy (casein protein) free? I get very similar symptoms like brain fog from gluten.

Remove the suspect item from your diet for two weeks to let it get completely out of your system before reintroducing it and monitoring for the symptoms to confirm you have an intolerance.

The log book also serves as a good talking point and "evidence" for discussions with your doctor. Discuss your plans with your doctor and make a partnership but let him/ her know that you have taken control and need their help guidance and prescriptions.

I used this method in the U.K. And the USA to get more frequent injections and even to convince the surgery that I would start to self inject.

Gentle exercise, range of motion, is needed to move the muscle to activate the nerves. This stimulates their repair also.

Pain is one symptom the is actually good. It tells you the nerves are healing. The signal is stronger and it takes the brain 2-3 days to recalibrate to the stronger signal. In the interim it unfortunately feels like pain.

You don't need a diagnosis of PA. You may have a B12D for other reasons.

Have you been tested for heliobacter pylori? Any stomach or other gut issues? Your gut may not be able recycle B12 in the hepatic loop of bile, intestine, portal vein, liver.

[babs67]

I am confused as as soon as I have b12 injections symptons go strange to me but being tested for diabetis celiac and thyroid don't quite understand

[deniseinmilden]

Hi!

Your story is all too common and, as you feel, is senseless.

Read through the past posts and replies on here, especially those by Gambit, Sleepybunny, Polaris, Marz, fbirder, clivealive and other regulars.

They will give you links to documents and strategies you can use with your Dr to get the level of treatment you need.

If all else fails, consider self injections: it is VITAL for your long term health that your body gets enough B12 and other vitamins.

You can also get help and information from the Facebook group

facebook.com/groups/PAB12DS...

Good luck and come back if you need any more details!

[clivealive Forum Support]

Hi babs67,

You say "Having had b12 injections 3 monthly for 3 years for Pernicious Anemia........"

Were you definitely diagnosed with P.A.? because if so it is for life - not just for Christmas.

I am not medically qualified to give advice - others on here will do that - but you really must get from your doctors answers as to why he has changed his diagnosis after three years. If it is based solely on the results of a blood test then he should be looking at the list of your symptoms rather than numbers on a piece of paper.

In my case, some years back, when I was asking my GP for more frequent injections because my symptoms got worse in the run up to my next one he initially refused because my b12 levels were "high" and tried to make out that the pains, exhaustion, brain fog, breathlessness etc., were due to some other reason rather than the P.A. He said I was getting my injections and that was that...."

Silly man! If only "HE" knew how I feel but of course he can't, he can only go by what he reads on the screen.

I then joined the Pernicious Anemia Society and my first question went something like "Am I the only one in the world that feels the need for more frequent injections....?" and the response was an overwhelming - No! - I was not alone.

Armed with lots of useful information I confronted this "one size fits all" guy again and he eventually agreed to allow me the occasionally early injection "when I feel the need".

My P.A was as a result of having gastric surgery in 1959, it was eventually diagnosed in 1972 so I have been having injections of cyanocobamalin b12 every four weeks for 44 years and I'm still "clivealive" at coming up to 75.

Be calm and factual with your doctor and hopefully he will do a bit of research and come up with the right treatment for you.

I wish you well for the future,

[Sleepybunny]

"Having had b12 injections 3 monthly for 3 years for Pernicious Anemia I am told by my gp that I don't have Pernicious Anemia my levels run 1000 but I still have all the symptons what shall I do."

I'd urge you to ring the PAS soon.

They sadly have a lot of experience of dealing with people who are facing having their injections stopped and in some cases can intervene.

Pernicious Anaemia Society

pernicious-anaemia-society....

01656 769 717

Office open from 8am till 2pm every day except Sundays. If you leave a message they should get back to you within a few days.

Treatment

As Clivealive says, if you were diagnosed with PA, treatment is for life and if you have neurological symptoms it should be injections every two months.

patient.info/doctor/pernicious-anaemia-and-b12-deficiency

See Management section for details of treatment.

Documents that contain details of recommended treatment are the BNF (British National Formulary)Chapter 9 section 1.2 and the BCSH Cobalamin and Folate Guidelines. Your GP will probably have a copy of BNF on their bookshelf but they may not have read the BCSH Cobalamin Guidelines. I was told the NHS should be following the BCSH Cobalamin guidelines.

Symptoms Lists

b12deficiency.info/signs-an...

pernicious-anaemia-society....

Symptoms Checklist in here. I ticked all my symptoms and gave a copy to GPs.

Has your GP said he/she will be stopping your injections? Is it because your blood levels are 1000?

Has your GP read the "BCSH Cobalamin and Folate Guidelines"? I read the whole document and found them very useful. I printed out a copy of the whole document and gave it to my GPs to make sure they were well informed.

I think that in the BCSH Cobalamin and Folate guidelines, it mentions that once B12 supplementation starts then B12 blood results are irrelevant. Can't remember which page though. I also found page 29 ,which is a diagnosis flowchart useful as it gives guidance on diagnosis and treatment.

Did you ever have a positive IFA (Intrinsic factor Antibody) test? This can help to diagnose PA but is not always reliable. It is possible to still have PA with a negative IFA test. The BCSH Cobalamin guidelines mention Antibody Negative PA.

b12deficiency.info/b12-test...

Useful books

Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

This book was published in Oct 2015 so is very up to date with new guidelines. I gave a copy to my GPs.

Useful websites

martynhooper.com/

Martyn Hooper is the chair of the PAS and has written several books about PA and B12 Deficiency.

b12d.org

Useful documents

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

the BMJ article has some very useful summary points.

"BCSH Cobalamin and Folate Guidelines"

Easy to find on an internet search.

[Polaris]

It is totally negligent of your GP Babs to stop your B12 injections on the basis of the B12 serum test and, in any case, as others have stated, treatment for PA is for life.

Below the latest BMJ research document - with useful summary showing how serious this condition can become if left untreated. Once treatment is started, the B12 serum test result is not reflective of how effective treatment is as it does not measure whether B12 is being absorbed by the tissues. It is the clinical condition of the patient that is important.....

The BMJ document states (bottom of page 4 under, "How is response to treatment assessed") :

"Cobalamin and transcobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment and retesting is not usually required".

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

The research document is supported by many research papers and is peer reviewed.