My daughter tested very low for B12 and folate on a private blood test. I put her on high doses of these vitamins immediately and went to see my GP. She requested another test to check the results and they have come back normal. This is all within a space of 2 weeks.
I have read on another site that supplements can distort the tests, but I can not find any scientific information on this. Can anyone help with that?
The GP will not carry out any further testing as these level are now within range.
If she has PA would she be able to absorb the supplements that quick?
Could the rise be due to inactive B12 and is that absorbed by the same pathway as the active version?
She is still showing neurological symptoms and is extremely tired, but here results have been corrected by a short period of supplements and the GP is putting the tiredness down to bring a teenager and has offered mental health services to check out her other symptoms.
HELP!!!
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Any supplements can raise the blood levels of B12 quite significantly; what's important here is that this might not mean any of it is more available for your daughter's system to use. Most labs say that it's not worth testing once supplementation has started, because it skews the results. GPs are supposed to treat on symptoms rather than on bloods. Read some of the pinned posts, and maybe print some off and take them back to the GP. Lots of luck; you must be worried x
The treatment of vitamin B12 deficiency linked anemia is not permanent as the temporary cure and the cessation of the anemia related symptoms depends on the repletion of the Vitamin B12. The most accessible or inexpensive method to replenish vitamin B12 is through dietary supplementation in the of sublingual B12 tablets available widely throughout the world. The oral and sublingual B12 are absorbed equally well but in the study subjects were not selected to be having pernicious anemia. Anemic patients may need sublingual cyanocobalamin or methylcobalamin tablets which permits absorption through the mucous membrane of the mouth thus bypassing the gastrointestinal tract completely therefore no risk of intrinsic factor discrepancy (Sharabi & Sulkes et.al., 2003).
In some studies oral tablets were used but they were required in very high doses to treat pernicious anemia were required (Lederle, 1998). The effectiveness of the high dose of vitamin B12 tablets to treat ordinary pernicious anemia is very well established. High oral administration allows B12 to be absorbed in places other than the terminal ileum. In a study it was found that oral B12 repletion was more effective than injections (Butler & Vidal, 2006). Innovative alternative methods of administering B12, including nasal sprays and behind the ear patches. In small study in mid 1997 with just 6 participants found that the intranasal administration of B12 led to increases in plasma cobalamin even up to 8 times of the given patient's baseline measurement (Slot & Merkus et.al., 1997).
So basically it can be absorbed through the mouth.
DAdvatar. Some brief comments about this research...
1. My understanding is that the research only investigated any rise is serum B12 levels and did not investigate clinical benefits or, in other words, if symptoms were relieved and if effective repair was taking place to all the systems that use B12
2. Some countries do use high dose tablets or sublinguals to treat B12 deficiency, but only after loading doses via injection...and symptoms are monitored to for clinical effect (because they don't work for everyone). Injections are used for those with neurological symptoms (before swopping to oral treatment) and those who don't respond to oral treatment are changed back to injections.
3. Sublinguals work for some people, but not for others.
4. High dose tablets or sublinguals are not licesnsed for use in the UK so any prescription form a GP will only contain 50mcg cyanocobalamin - enough to treat a dietary deficiency (often experienced by vegans) but certainly not a high enough dose to treat those with B12 deficiency caused by absorption problems (the majority of those with B12 deficiency (from any of the many causes).
5. The absorption rate from injections is 100%. The absorption rate from sublinguals, tablets, nasal sprays etc. is approximately 1-3%.
6. In the UK, B12 injections are the only recommended treatment for those with neurolgical symptoms (like your daughter).
7. Some GP's in the UK are mistakenly interpreting this research and using it to stop treatment with B12 injections, replacing the injections with the low dose 50mcg tablets (insufficient dose for adequate treatment).
8. The important thing here is that GP's should treat symptoms, not serum B12 levels.
Your GP is wrong to ignore the original results and refuse more investigations/ treatment, especially,in light of your daughters continued symptoms.
About your daugther's results and treatment:
1. spacey1 is correct. Once any form B12 supplements been taken, blood tests are skewed. B12 levels are raised but this is no indication that a) a deficiency never existed or b) that treatment is no longer required.
2. All the UK guidelines state that once supplements have been commenced, serum B12 tests are not required (unless looking for low levels - in which case more B12 should be given). See links to BSCH Cobalamin and Folate Treatment Guidelines that I'm going to paste in a link below - along with others that will help you understand what your GP should be doing...and give evidence to take along and show them.
3. Many GP's are unaware of the neurolgical havoc that B12 deficiency can wreak on the body. In the UK, treatment for those with neurolgical symptoms involves B12 injections - six loading doses given on alternate days and then injections every other day until no further improvement....then injections every eight weeks. Your daughter's continued neurolgical symptoms are likely caused by the under treatment of her B12 deficiency.
4. Those with untreated or undertreated B12 deficiency often get referred to mental health services and the cause (B12 deficiency) remains untreated. B12 deficiency can cause anxiety, depression, psychosis...and a host of other neuro-psychiatric symptoms. Your GP is probably unaware of this.
5. Where unexplained neurolgical symptoms are present (unexplained because your GP seems unable to recognise that this may be due to B12 deficiency), then it is usual to refer to a neurologist for further investigation. Also - neurolgical symptoms can have many other causes too, so it's always advisable to rule out any other potential causes. Ask your GP (think I'd insists) to refer your daughter to a neurologist for further investigation of her neurolgical symptoms.
To conclude, your GP is wrong and clearly does not understand B12 deficiency, the role of serum B12 testing, or the hugh range of symptoms that it can cause. Nor do they understand the importance of having immediate intensive treatment with B12 injections when neurolgical symptoms are present.
It's very frustrating that GP's often refuse to accept private blood test results...and your daughter did have a proven B12 deficiency. Goodness only knows how your GP can refuse the original evidence they were given. And ignore her ongoing symptoms.
I'm going to paste in some links below giving more information about B12 deficiency, it's diagnosis and treatment etc. Suggest you read through them all, highlight what is relevant to your daughter, then go back to your GP and request that her proven B12 deficiency (with neurolgical symptoms) is treated according to the guidelines. (Remember that the 'new' serum B12 test is meaningless because she has had high dose B12 supplements).
Suggest you also,print the symptom list and tick symptoms your daughter has. Take it with you and ask for it to be included in her medical notes - along with any evidence you take along to your GP.
Looks like a lot of reading but most links are to one page documents (with the exception of the BSCH guidelines - but that has useful summary sections if the whole thing is too much for you to 'digest').
Do push for treatment since untreated B12 deficiency can result in potentially irreversible neurolgical damage (a condition called subacute degeneration of the spinal cord - ask your GP to look this up). Certainly not suggesting that your daughter has this but many GP's have never heard of it - and it might sharpen their thinking in the right direction - the treatment direction.
Please do post again if your GP still refuses to help and we can try and advise further. Here come the links:
onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment Guildelines for Cobalamin and Folate Disorders)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
The IFA test is only of limited use anyway, although it should have been done. Because it isn't very sensitive, if you have a positive result, it's definitely PA, but if it's negative, there's quite some chance it might be PA anyway! Treatment for low B12 and for PA should be the same, so it shouldn't make a difference, except that it's good to have a diagnosis, and sometimes it's easier to fight for the B12 if PA is proven.
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