I was diagnosed with PA in 2006 after having a blood transfusion due to low haemoglobin. I was given the loading dose of b12 and then continued to have them every 8-12 weeks. I was also prescribed 5mg folic acid daily.
In 2015 I seemed to develop a sensitivity to my b12 injections (hives, hot flushed skin) which responded to antihistamine treatment. This sensitivity became worse each time I had the injection, we tried hydro & cyano in a variety of different brands but I responded the same with both and this eventually led to anaphylaxis. At this point my GP decided it was unsafe to continue delivering B12 injections.
It has been over 18months since I last received a shot and I feel absolutely awful, I've had to reduce hours at work due to exhaustion , I'm in constant pain and regularly have pins and needles in my hands, feet and lips.
I have been referred to an allergy clinic and haematology. The consultant I have seen at the allergy clinic has been amazing, but I am still awaiting an appointment to be admitted to receive the B12 injection in a controlled environment, however the haematologist I am seeing seems to have no understanding and keeps implying that my symptoms are in my head.
She has stated that my b12 levels are very high, but agrees my folate and iron are low. My folate level is below 2 and my iron in 33mcg. I have asked her if my b12 levels are a true indication as I am aware that a blood test can also show in active levels and she states they don't have the facilities to test active levels.
My haemoglobin has decreased over the last few months but it's above 10 so she has also stated that she's not concerned.I have also had both positive and negative intrinsic factor tests but she seems to focus on the negative. She has even stated that my symptoms maybe linked to hormonal changes (I'm in my late 30's) and that low folate and iron wouldn't make me feel like this!
I have a GP appointment this week, as I can't continue like this. Does anyone have any suggestions on what my next steps are? I don't want to self inject as I don't feel that it's a safe option for me at present.
Written by
Bella-21
To view profiles and participate in discussions please or .
I included links to several papers discussing cobalt/b12 desensitization procedures, your allergist may find them helpful.
If you've had even one positive IFAB test then you have PA. And i'm sorry you're dealing with such a haematologist - they really have trouble understanding the impact of autoimmune diseases don't they! A real disgrace.
The paper "many faces of cobalamin (vit b12) deficiency" is a good one to show them.
This is the test used to find out if the patient has ‘classic’ or ‘full-blown’ Pernicious Anaemia. The test is classified as highly specific (>95%): if tested positive the patient will be deemed as having auto-immune Pernicious Anaemia. However the test has a low sensitivity (50-70%) which means that a negative result does not rule out Pernicious Anaemia."
Your doctor doesnt understand the results of the anti-intrinsic factor antibody test. Provided you did not have a B12 injection within 2 weeks of the anti-intrinsic factor antibody test, a positive result (which you have) is 95% diagnostic for pernicious anemia. The negative result does not rule out pernicious anemia because 50% of those with PA will test negative. Focusing on the negative result makes no sense - you have tested positive and that positive result is 95% specific for PA. The negative result is thus inconsequential.
I dont have any great ideas how to treat the allergy issue beyond what you said you're doing but at least you are seeing an allergy specialist who can help. its very important they find a way to desensitize you to the injections as regular B12 injections are your best hope of recovery. For neurological symptoms (which you have) injection every other day until no further improvement is the NICE guideline.
The haemotologist is gaslighting you. Ignore them. In one sense it is "in your head" because thats where our recognition of nerve pain etc happens but this doesnt mean the symptoms are being fabricated by you as in a psychosomatic illness etc. Low B12 results in lower levels of important neurotransmitters in the brain like dopamine, serotonin etc, it affects mood and can cause anxiety, depression, problems with motivation etc. But those symptoms are not magic, they're a chemical problem from low B12. Only if B12 levels were fully corrected and deficiency symptoms being adequately treated for some time, would it be possible to rule B12 deficiency as causing various mental issues. The other symptoms you describe are quite consistent with severe B12 deficiency.
Don't let their nonsense get you down - you are no more imagining these symptoms than any of us here were and there is a lot of us!
Its strange that your folic acid level is still so low after taking 5mg Folic Acid for several years, what do your doctors say about that? 5mg is a huge dose that is prescribed short-term to correct a deficiency - it would be very strange to have a folate level of 2 after years on such a massive dose - I think it may suggest serious absorption issues (possibly due to the B12 deficiency?).
High B12 blood levels, even for a long time after injections, have no relationship to whether treatment is adequate or not. With B12, the patients relief from symptoms must take precedence. This is very often not understood. Testing B12 levels once treatment starts is therefore useless or even counterproductive if it results in a reduction in the frequency of injections while worsening symptoms are ignored. See point 2 in b12-institute.nl/en/diagnos...
May be worth you looking at the values/mission statement on your ICB (Integrated Care Board) or Health Board website as there should be something on patient experience of healthcare.
CCGs were replaced by ICBs on July 1st 2022.
Have you considered asking to record appointments?
Doctors are unlikely to be keen but if you have memory/cognitive/fatigue issues that would make it hard to remember or understand what's said, you should be able to on disability grounds. If you want to do this, I suggest asking in a short, polite letter to GP, well in advance of appointment and include reasons why you need to record appointment eg memory problems.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
B12 or Iron? advice needed please 
Advice on Tests Please
Advice before apt with doctor tomorrow please?!
Advice please
