Does anyone know whether it would be considered normal for B12 levels 6 months after a series of 5 loading injections to have dropped right back to the bottom of the normal range?
My B12 levels have been 168, 160, 122 and now 208 over the past 2 years - having been back and forth to GPs with a range of symptoms.
The B12 normal range with my GP is 180 to 2000.
I wasn't offered any treatment until my level fell to 122 and was then given 5 loading injections and told to wait 6 months then retest. My GP - whilst agreeing that my symptoms (gastric, neurological and other) are classic of B12 deficiency - doesn't think that B12 deficiency is causing my symptoms. He says he is 'at a loss' because all my other test results have been normal. My ferritin, folate and various other things are only just in range, but normal as far as he is concerned.
So, now my 6 month blood text has come back within range at 208 I know they will refuse to consider that B12 could be the problem.
My diet is good and contains well over the RDA of B12. I've tested negative for PA (IF and anti parietal cell) and have no other health conditions - although I do have a strong family history of autoimmune illnesses.
I'm pretty sure they will try to fob me off with anti-depressants and at best agree to a B12 test in a year.
Thank you for reading
Written by
BlackInk
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I’m sorry to say that it sounds like your GP doesn’t have a clue how to treat PA/B12d.
Once diagnosed, injections are for life and further blood tests of serum levels are not required.
Where there are neurological symptoms present, injections should be every other day until there is no further improvement at which point injections fall to every 2 months.
If you look at replies given by Sleepybunny you will see links to the guidelines that GPs should follow that day the above.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not have updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
If you think PA is a possibility, worth joining and talking to PAS. It can take many years to get a PA diagnosis.
Forum members from that county report that it uses guidelines that have not been changed for many years. If you are in Gloucestershire, there is a PAS support group in the county.
I suggest you track down the local guidelines for your area of UK and compare them with national guidelines, see BSH, BNF, NICE CKS etc links.
According to this study at least, levels can drop towards the lower part of the normal range 6 months after loading doses. As you can see from the table 2 each person is different, for some it dropped lower at the 6 months stage than for others.
Thank you GastritisB12 So even people with confirmed PA are likely to have B12 levels well inside the 'normal' range 6 months after a course of loading injections? What I need is evidence I can show my GP that the fact that my levels have dropped back so low means I need to be on regular injections. They plan to leave me for a year then retest again because 208 is within normal range for my area (GP says 180 or above is normal).
That's odd, if you have confirmed PA, if you are in the UK, I thought they have to put you on 2 monthly or 3 monthly injections for life according to NICE and BNF guidelines?
They shouldn't re-test you whilst on injections because the level will be high.
And they shouldn't stop the injections because PA is a lifelong condition.
I would just re-direct them to the guidelines and show them your PA diagnosis, that should be enough to put you on injections for life?
Also, once you have PA, they have to treat your symptoms not your B12 level. In people with PA their symptoms are not linked to their B12 level being within range. Some people require a much higher level all the time to keep symptoms at bay.
Sorry if I've confused you! I don't have confirmed PA (IF and anti-parietal cell tests were negative) but my B12 was low and getting lower despite always eating plenty of B12 rich foods. According to guidelines I should have been straight on loading doses then regular injections because my deficiency isn't caused by poor diet, but they refused and said they follow local guidelines. They are using my now just-in-range result as evidence that I don't need treatment. The link you sent me suggests it would be expected for my B12 still to read much higher than 208 after 6 months?
That study was very limited, only a few people. And 208 is very low. In some countries like the USA people were recruited to B12 deficiency studies if their level was below 245 (and that's in UK units).
I don't know what to suggest, perhaps changing surgeries?
If your B12 keeps dropping that fast they should treat you more regularly.
I don't know if you want to go through an endoscopy to get more indication if anything is going on. It may also end up inconclusive.
Any chance of internal parasites eg fish tapeworm? Fish tapeworm infection can lead to severe B12 deficiency, have you ever eaten raw fish? One potential sign of fish tapeworm infection is a rise in levels of eosinophils ( type of white blood cell). Eosinophil result can be found in Full Blood Count (FBC) results.
They seem different in quite a few details from the national guidelines I listed in my other post.
If you're in an area where it is difficult to get the recommended treatment or national guidelines are not followed then your MP may be interested in hearing about your difficulties.
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