Im pretty new to this all. I was feeling extremely weak lethargic, pins and needles etc and my b12 came back pretty low (167) started injections but now the doctor tells me that the test for my antibodies came back negative which means I do not have PA and that they will not do an Intrinsic factor test. Does this make sense?
Also my loading doses made a huge difference (im a young 23yr old mother to 2 kids and was literally bedridden) however a week after my last one i felt all my symptoms returning. I got a private doc to inject me but is that not another factor that shows it might be PA here?
Thanks so much in advance for any advice!
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When a person has a decreased vitamin B12 level and/or increased methylmalonic acid and homocysteine levels and has IF antibodies, then it is likely that the person has pernicious anemia. A negative test result does not necessarily mean that a person does not have pernicious anemia.
Very often symptoms return as the body heals itself, I have been on injections for 3yrs and still healing.
I tend to post a lot of information and usually suggest that people take at least a week to read it so they don't get overwhelmed. Some links may have details that could be upsetting.
"pins and needles"
This is a neurological symptom. I am not a health professional but I would expect you to be on the treatment pattern for those with "neurological involvement" mentioned in link below.
If you think PA is a possibility, worth joining and talking to PAS (Pernicious Anaemia Society) who can offer support and pass on useful info. You do not need a confirmed PA diagnosis to join PAS.
If you've been tested and you had a negative result in tTG IgA test (usual test for coeliac), check the NICE guidelines to see if your GP followed the recommended diagnostic process, some don't....
It's possible to have a negative result in tTG IgA test if
1) patient has IgA deficiency.
Test for IgA deficiency is called Total IgA test.
2) patient was not eating enough gluten before blood tested
Did your GP ask you to eat plenty of gluten in more than one meal per day for at least 6 weeks before blood tested?
Any chance of an internal parasite eg fish tapeworm?
One clue that there might be an internal parasite is an increased level of eosinophils, a type of white blood cell. Eosinophil result can be found with Full Blood Count test results.
Medicines/drugs
Has your GP reviewed any medicines/drugs you are on?
There are some drugs and medicines that have been associated with low B12 levels. Metformin, a diabetes drug is one.
There will be new NICE guidelines on PA and B12 deficiency published in November 2023.
One thing I urge UK forum members to find is the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board as GP is likely to refer to these for diagnosis and treatment advice.
Sometimes the advice in local B12 deficiency guidelines varies from advice in UK health documents.
I hope you are not in the UK area discussed in blog post below.
Some UK forum members turn to treating themselves if NHS treatment is not enough.
Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some and some as a last resort turn to injecting themselves.
There's a lot more information I could post, just let me know if you want me to post more.
Wow this is a lot of information but thank you so much for posting it. As of yet I have not been diagnosed with any stomach problems such as celiac and I have a very healthy diet including lots of food rich in B12 which made me think even more that this is possibly PA because according to the amount of food im eating high in B12 I should not be feeling this way. The only thing I can think of is that I used Nitrous Oxide by the births of my 2 babies (baby 1- 2years, baby 2- 11 months) but would you know how long the effects of nitrous oxide would continue for since its been 11 months since my last one. Thanks again for all your help.
Is there a family history of PA or other auto immune diseases and if there is does the GP know about it?
A family history of auto-immune disease increases the chance of developing one. Both PA and coeliac disease are auto-immune diseases that can lead to B12 deficiency.
I'm not a scientist or medically trained but I think what happens is that nitrous oxide changes B12 into an inactive form. Over time, this inactivated B12 will be replaced in the body. I'm guessing it might take a while for the levels of active B12 to build up after exposure to nitrous oxide.
One issue that winds me up is that there is no mention on the NHS page for pain relief in labour that nitrous oxide in gas and air mix could be an issue for some people, especially if they are already low in B12 or have PA.
Coeliac disease can sometimes present without gut symptoms.
There is a skin form called dermatitis herpetiformis. Do you get itchy skin rashes?
Some forum members report benefits from going gluten free even if they don't have coeliac disease.
My understanding is that the GP should be treating you now with every other day B12 injections until your symptoms stop improving because you have neuro symptoms. When your symptoms have stopped improving then it's usual to have maintenance B12 injections every 2 months if patient has neuro symptoms.
There is no set time limit as to how long the every other day loading injections for those with neuro symptoms should continue for. It could be weeks of them or even months of them.
This info is in their BNF book Chapter 9 Section 1.2 and in BNF link below.
You could ask your GP to check this....in my experience, some GPs are not aware.
BNF hydroxocobalamin (info aimed at health professionals)
See heading "Pernicious anaemia and other macrocytic anaemias with neurological involvement"
If GP refuses to treat you adequately, it may be worth talking to them about how inadequate treatment increases the risk of developing permanent neurological damage including damage to spinal cord.
There is more info I can supply on this so let me know if you want me to post it.
To my mind, the fact that your symptoms are returning quickly could be a sign that you need more B12. Some forum members report that their symptoms get worse for a while when treatment starts before starting to get better.
I bet you were only given 6 loading injections which is the loading pattern for those without neuro symptoms.
How often is GP planning to give you B12 injections now? Every 3 months?
Symptoms Diary
Worth keeping a symptoms diary, daily or weekly. Track up to ten symptoms (more if you have the time and energy) and score their severity each day/week. This should provide useful evidence of improvement or deterioration in symptoms to show doctors. It might help you and them to work out how often you need B12 injections.
Other results
Have you got recent results for folate, ferritin (and other iron tests) and Vitamin D?
Full Blood Count (FBC) test results also useful.
It's common for forum members here to have these deficiencies as well as B12 deficiency.
If you've been told that your other results are normal, always check for yourself.
Sometimes forum members find that some results are not normal or are borderline when they check.
Thyroid
Have you had any recent thyroid tests?
It's quite common for people to have thyroid issues as well as PA/B12 deficiency.
You could put any thyroid results on Thyroid UK forum on HU, very supportive forum.
In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests that a GP or specialist can order.
Thats a lot of information that I've been trying to process😉 as far as im aware no family members have PA and/ or celiac. Yes iv had 6 loading doses and then every 3 months but only for the next year because they claim i dont have PA. Apparently all my other tests were fine (iron etc) but i will request the results from my Gp so that I can confirm myself. Do you have any idea if I can just request a thyroid test from my GP for no particular reason? Do they have to provide me with this? Thanks so much for all your help
My folate and ferritin were both in range but low. When, despite being treated with the usual B12 regime (6 loading, then every 3 months maintenance), I continued to get worse. Because symptoms included hair loss and bleeding gums, GP wanted to up both of these levels , so had 3 months supplements of both. She wanted my ferritin stabilised at above 60 ug/L, below which you can be symptomatic. It took a long time for these levels to stop being erratic.
Vitamin D another one to watch - I was found to have osteoporosis of the spine so now get this on prescription along with Raloxifene. This condition is also finally improving.
"Do you have any idea if I can just request a thyroid test from my GP for no particular reason?"
If one of your symptoms is fatigue, I would expect them to check thyroid function.
Suggest you ask this question on Thyroid UK forum on HU along with an outline of your story.
There's no reason why you can't ask for thyroid tests. Might be worth pointing out any symptoms you have that are consistent with thyroid conditions to them.
They are likely to only do TSH but worth trying to get other thyroid tests. It's possible to get thyroid tests privately in UK but NHS GPs sometimes don't accept results of private tests. I would expect them to repeat same tests on NHS if private tests show something significant.
"as far as im aware no family members have PA and/ or celiac."
Are there other auto-immune conditions in the family eg auto-immune thyroid problems?
If the doctor says that your antibodies came back negative, then that was the Intrinsic Factor antibodies test . About 50 % of P..A.patients test. negative for the Intrinsic Factor Antibodies test ( IFAB!)
If your GPwill not be moved and reinstate your injections ( he already shows ignorance of PA if he believes that a negatative IFAB test rules out PA ) You could consider self-injection . If that turns out to be the case , come back here for information about S.I.
Ok, thank you! I have already self injected 4/6 of the loading doses since the nurse couldnt accommodate me and I would be happy to go down that route.
HOW TO OBTAINB12 (Hydroxocobalamin) AMPOULES FROM REGISTERED GERMAN ONLINE PHARMACIES
Things have changed regarding ordering b12Depot ampoules( Hydroxocobalamin ) which is what is used by the NHS in U.K.
I use apohealth.de They do not charge for delivery , You can choose to have the site in English ( bottom left ) . Pay with Paypal or card . This pharmacy sells world-wide , but not to New Zealand or Australia
versandapo.de You need Google Chrome for translation .
There are a few other German online pharmacies that deliver to U.K. I will add these when I find out Always good to have an alternative .
I advise registering , This makes subsequent ordering simple. Put your country in FIRST by clicking on the drop-down country list . Your post-code and the rest of your address will then be accepted .
You can use the following reference numbers to order
Packet of 10 Pascoe B12 depot Hydroxocobalamin single use ampoules 1.5mg x1ml —07568672
Ditto 100 ampoules 07568695
—————————————————————
Packet of 10 Hevert B12 depot Hydroxocobalamin single use ampoules -1mg x 2ml 06078368
Ditto 100 ampoules.06078380
Unfortunately our favourite ampoules , the Panpharma brand B12 depot -Hydroxocobalamin ( previously Rotexmedica ) are at the moment unobtainable. But we hope that they will soon be obtainable again
( Ref no 16199707 )
The above brands work very well but are unfortunately more expensive than Panpharma . But when needs must……….
I am a [retired] scientist, not a medic. The statement
'the test for my antibodies came back negative which means I do not have PA' is quite possibly correct, but if they won't do an IFAb test, I can't help but wonder what antibody tests have been performed. IFAb is the best test we have in the analytical armoury at present, and even that is only positive in around 50% of cases with PA. So it doesn't make too much sense to me.
The answer seems to be that if B12 injections make the symptoms go away, then it's likely that the B12 injections are helping.
Many individuals have resorted to self-injection of B12, typically bought on line from Germany, and it certainly helps them.
This is something that needs addressing, because failure to treat the condition can have catastrophic consequences, and the two kids will wear you out regardless!
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Parietal cell antibody test
False negative PA Tests?
Antibody test was normal...
Normal levels for intrinsic factor antibody? 
Parietal cell antibodies / myocardial antibodies 
