I originally visited my dr complaining of fatigue - she tested my B12 which was low enough that she commenced me on the 6 loading doses (completed mid june) and tested me for parietal cell antibodies which were negative so I was recommended to re-attend if my symptoms returned.
My symptoms began to return after a month but now after 2 and a half months I am back to exhaustion - crying before going to work because I don't know how I'm going to get through the shift and brain fog so intense its so difficult to concentrate enough to make difficult decisions.
She's requested a repeat b12 level - I have said I'm concerned because I've read that a repeat after the 6 doses will cause a false high but shes asked me for sources/a timeline on when it is acceptable to re-test.
So far all I can find is sources saying that it isn't necessary to re-test after starting treatment, however, she wants info that shows that testing after the loading doses will provide a false high level.
Please can someone help me? I'm so worried about making a mistake at work that could seriously affect other people because the brain fog is so real.
Thank you!
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Emmy2018
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Testing of serum B12 levels after treatment has commenced is not necessary. (See bottom of page 5) where the 2 months interval of injections for those with neurological symptoms is also reiterated.
Your doctor should continue injections due to your symptoms
The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
I've not supplemented with folic acid as my folate levels are normal. Hopefully the british society for haem guidelines will be helpful to push my point.
She didn't seem to buy the "re-testing is not necessary" bit - she seemed to think although it says not necessary it would still give an accurate level and so if it was high then I'm fine (basically she won't move forward with this before I have the repeat blood test so I need to show her the results will be useless)
That was an NHS document so your doctor ought to take notice and not worry about re-testing the result of which is bound to be sky high,
You cannot "overdose" on B12 as any excess is excreted via your urine.
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
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
Your Folate level was only just above the bottom of the range before your B12 treatment started. Are you able to eat plenty of leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas, beans etc?
I'm asking because b12 treatment varies from country to country.
In UK, parietal cell antibody (PCA) test is not recommended as a diagnostic test for PA. See BSH guidelines link in this post for more info. In UK, intrinsic factor antibody (IFA) test is used but this is not always reliable and it is still possible to have PA (Pernicious Anaemia) even if IFA result is negative/normal range. See flowchart link below, which outlines when PA and Antibody Negative PA can be diagnosed in UK.
Do you have copies of your blood test results? If GP suspected PA , I would be very surprised if an IFA test was not done.
It's possible to have PA even if PCA test is negative. See what test result means section in link below.
If yes to neuro symptoms then my understanding of UK guidelines (I'm not medically trained) is that you should be on second pattern of treatment. See BNF, NICE CKS, BSH links for UK B12 treatment info.
GP may say that you do not have PA diagnosis so this treatment pattern does not apply. May be worth referring them to BSH Cobalamin and Folate Guidelines (link below) which is clearer that the second treatment pattern applies to any cause of b12 deficiency if neuro symptoms are present.
I suspect your doctor might be following out of date local area NHS B12 guidelines. Might be worth finding out what treatment guidelines are being used.
"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 is up to date with UK b12 guidelines.
"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.
I've just seen that you are in UK.
PAS
I'd suggest it might be worth joining and talking to PAS (Pernicious Anaemia Society). Best to phone. They can pass on info about how PA is diagnosed and offer support. There are PAS members who do not have a PA diagnosis partly due to difficulty in getting a diagnosis.
"basically she won't move forward with this before I have the repeat blood test"
PAS can sometimes intervene on behalf of PAS members and at very least can pass on useful info.
Martyn Hooper's blog post about support for those seeking PA diagnosis.
Has GP ruled out possibility of dietary deficiency? Vegan or vegetarian diets can be a risk factor for B12 deficiency. Do you eat plenty of meat, fish, shellfish, eggs, dairy, b12 enriched foods?
If yes to diet rich in B12 then diet is less likely to be cause of low b12 and likelihood of an absorption problem in gut increases.
Dietary B12 deficiency is sometimes treated in UK with low dose cyanocobalamin tablets. Sometimes loading jabs may be given in dietary deficiency to increase levels quickly and if neuro symptoms are present even dietary deficiency is supposed to be treated with injections.
Any exposure to nitrous oxide? This is in gas and air mix, used as pain relief.
There is a useful summary of mainly UK B12 documents in third pinned post on this forum. Think there is info in it about re-testing being irrelevant once treatment has started.
Blood test info
Link about What to do next if b12 deficiency suspected
Hi Emmy2018. Grief...I do wish GPs understood more about the diagnosis and treatment of B12 deficiency (understatement)!
Here's a document that explains why serum B12 levels are of no use in evaluating the efficacy of treatment, once B12 injections have started. Also includes links to research papers:
This is precisely why treatment guidelines issued by British Committee for Standards in Haematology state that testing serum B12 levels once treatment has commenced is unnecessary (Clivealive has left you a link to that document).
Good luck with your GP and please list again if you need more help, information, or support.
This is a link to the latest BMJ research document summary only but GP should be able to access the full document as she obviously needs a crash course understanding B12 def. not to mention empathy...... May need to be sent in a letter to the surgery, together with UKNEQAS link and perhaps take someone with you to next appointment for extra support and witness.
It states that there is NO reliable test and, (bottom of page 4 ' under, 'How is Response to treatment assessed' ), once b12 treatment is started, blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."
The document also contains information regarding frequency of injections for neurological symptoms :'every other day until no further improvement (British National Formulary) - particularly important as, the more severe the symptoms, the longer it takes to recover, particularly if they're neurological.
Polaris mentions possibility of writing a letter to GP.
If you look at letter writing link in my post above, it gives templates for writing to GPs about B12 deficiency. The link has a lot of useful B12 info.
My understanding is that in UK, letters to GPs are filed with a person's medical notes so are therefore a record of issues raised. From personal experience, I would say that letters are much harder to ignore than things said in a face to face appointment or over the phone which may get forgotten or not recorded in notes.
I used to sometimes write polite, brief as possible letters including info such as symptoms, relevant family history, extracts from UK B12 documents etc. I always kept copies of any letters I wrote and sometimes referred to previous letters in an appointment which meant the GP then had to look up the scanned letter on their computer. I also took spare copies of previous letters with me, in case GP had lost them.
I also handed over complete copies of some UK documents but I have a sneaky suspicion that some of these ended up in the bin.
Sometimes GPs can find it hard to cope with a more assertive patient and GP/patient relationship can suffer. I think it's a good idea to take someone supportive with you to appointments, even better if they know about B12 as I think GPs are sometimes kinder when a witness is present.
Hi Emmy2018, I can empathize with you totally. I finished my loading shots a few weeks ago, I went back to the GP because I felt little improvement so had more blood tests done all came back ok but I need to check because alot of my other tests came back as the low side of normal. I don't like to make a fuss and demand things from my GP but I may have to as there are days I struggle with my legs and feel they will give way but it's the depression that scares me. I hope you improve soon ❤️
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