Newbie here! Apologies for the long post - I don't know who else to ask!
I have been diagnosed with iron-deficiency anaemia on and off all my life, from toddler age onwards. I don't know that my B12 levels were ever tested.
I read about B12 a few years ago and started supplementing randomly, thereby invalidating blood tests...
I have been told I have an auto-immune condition, probably Sjogren's, but I have had a bad back, (surgery to remove ruptured disc and 4 further herniated spinal discs)neuropathy and weird tingling and zapping sensations etc for many years which has always been attributed to the back issue.
I was told I probably had Chronic Fatigue Syndrome about 15 years ago.
I have been having serious stomach issues for quite some time but no doctor investigations were carried out because I refused PPIs and a gastroscopy.
I have had constant dental problems for the last 6 years or so and each time I get an infection (which ends up with an abscess and tooth extraction) I feel VERY sick.
The nausea and vomiting for the last 6 months have been horrendous.... and I am now so tired with brain fog and concentration issues that it's all I can do to go to work. I'm exhausted but don't sleep well.
I gave myself a sub-cutaneous injection of 1ml hydroxocobalamin in the morning, 2 days ago, and have barely felt queasy since!!! I was full of energy that day and thought I had more feeling in my leg. However, whilst still not feeling sick, which is HUGe and the first time in months, I am today completely exhausted again.
My grandma had PA and I know it can run in families so I've ordered a private blood test for Intrinsic Factor antibodies and an active B12 test.
My question is: would the fact that the injection stopped the sickness, which nothing else has done in months, indicate that I could have undiagnosed PA?
I appreciate that if the antibodies test comes back negative (which I understand it often does), any other blood tests won't be valid because of supplementing but I am quite prepared to self-inject if I have to if it makes me feel human again!
Does anyone have any comments or advice they can offer, please?
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FionaD
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The reaction implies that B12 is involved somewhere, but that doesn't necessarily mean an absorption problem.
PA is a specific condition that will lead to B12 deficiency, but it's about getting B12 from your food into your blood. It then needs to get from your blood into your cells and to be used in your cells - and things can go wrong with all 3 steps.
The active B12 test is unlikely to be helpful at this point because of the injection and I'd recommend that you ask formally as to how long you should stop supplementing for the IFA test - could be as little as 2 days or could be as much as 2 weeks depending on the exact test method being used.
If the B12 helped then I'd continue with it. B12 isn't toxic.
If you're in UK, I'd suggest reading all following documents. Also more b12 info in pinned posts including a useful summary of b12 documents in third pinned post.
I have been ill for not far off 20 years. Told I had CFS, fibro, hypochondria, psychosomatic symptoms and eventually worked out B12 deficiency was likely.
Be aware that it is possible to have Antibody Negative PA (PA where IFA test result is negative or normal range)...some GPs may be unaware of possibility of Antibody Negative PA. See BSH Cobalamin guidelines for more info or Martyn Hooper's book.
Flowchart link and BMJ link emphasise that in UK, people who are symptomatic for b12 deficiency should be treated even if B12 level is within normal range.
UK NICE guideline suggest anyone with unexplained b12, folate or iron deficiency should be tested for Coeliac disease.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.
Not uncommon for people on this forum to have thyroid disease. in UK, often only TSH tested which will not give full picture of thyroid function. May be worth putting any thyroid results on Thyroid UK forum on HU.
I know my thyroid is okay, I actually went to a B12/thyroid conference organised by Tracy Witty (sp?) a few years ago because my sister was having problems. She thought it could be thyroid but her blood tests were 'normal'. However, when the nodule got so large that it was pressing on her windpipe and they could see it, they operated! The antibodies showed up later. I got her to have a private full thyroid panel blood test in the meantime and it showed up. I had one at the same time and I was fine.
I got her on NDT and she's doing okay and some of her hearing is coming back but she's now got psoriatic arthritis, which you can physically see, red swollen joints and psoriasis, but nothing shows on blood tests so according to the doctor she doesn't have it.
(I also developed psoriasis a couple of years ago.)
I had a b12 test after the conference which showed 500 but I suspect I had probably been supplementing -(a little knowledge....!)
I've cancelled the active b12 and intrinsic factor antibodies tests and will order the full PA panel instead. I did intend to stop the injections but as I say, the first one last Thursday morning stopped the nausea. I started feeling sick again on Saturday so I injected again on Sunday morning. I had a great day!! No sickness and I got more done that afternoon than I'd been able to do for months.
I got to Tuesday and felt I needed another one so I injected again. I was still feeling very tired but my brain was working so I was able to cope at work and lay down for an hour when I got home.
I've read the Martin Hooper books and re-read Sally Pacholok's book which I read after the conference 3 years ago. (I read it and could see straight away that one of my work colleagues had b12 issues - his sister was having 3 monthly injections but still having mental health problems so I gave him my copy but I don't think he did anything about it.)
Interestingly, I have had a very painful tongue on and off for many years. I've always thought I'd bitten it but didn't remember doing so, and there were no bite marks.
I started going grey at university and have been using permanent dye since I was in my twenties. I am 55 and I suspect completely grey for many many years.
I don't know if I sigh but I've said I sound like a tennis player with the grunts and puffs I make when I try to do something and I'm often breathless from going upstairs. After my back operation, I couldn't speak in whole sentences without whooshing for breath in the middle. I sounded as though I had asthma.
I know it would be wise to stop supplementing and get a proper diagnosis but I started a new job recently. I know I'm not doing my best and I'm still in the probationary period. I don't get paid for sick leave and I've already had half my holiday as time off sick. With no other household income I don't see that I have a choice...
I'm taking folate with the injections and upped my potassium intake.
Do you have any further advice?
And again, many thanks for all the helpful advice so far!!
"After my back operation, I couldn't speak in whole sentences without whooshing for breath"
Did you have nitrous oxide as part of anaesthesia?
Nitrous oxide is also in gas and air mix used for pain relief in labour. Nitrous oxide inactivates B12 in the body. There is a chapter in "Could it Be B12" book about effects of nitrous oxide. Nitrous oxide is also mentioned in Martyn Hooper's books listed in my first post.
What blood tests does PA panel have? Have you told them you are supplementing B12? Hopefully they would take any supplementation into account when interpreting test results
If you join PAS , you can get access to PAS support groups.They can be a useful source of info. Not all PAS members have a confirmed diagnosis of PA, partly due to difficulty in getting a diagnosis. If you join and ring PAS, you may get through to chair of PAS, Martyn Hooper.
Gastro-enterologist
With serious gut issues, have you had a referral to a gastro-enterologist? It's your right to ask for referral but GP does not have to agree. I put requests for referrals ina brief, polite letters along with evidence/reasons for referral.
A gastro specialist may pick up signs of gastritis or gastric atrophy due to PA, Coeliac, H Pylori etc.
NICE guidelines for Coeliac disease suggest that a referral to a gastro-intestinal specialist should be considered for a person with suspected Coeliac disease, who is on a gluten free diet and does not want to start eating gluten again. See Section 1.1.5 in NICE guidelines Coeliac disease (2015 version - link in my second post).
They're going with "probably Sjogren's" as I have dry eyes and mouth (and corneal dystrophy) and they confirmed tendinopathy.
I've no idea about the anaesthesia used for the back op but I was VERY knocked about by it and I took much longer than expected to recover. That's when the insomnia and the tinnitus started.
When I had a general anaesthetic for dental surgery a couple of years ago they kept me in as my blood pressure dropped so low. I remember being very giggly when I came round and telling the nurses jokes 😂 Does that sound like NO? The psoriasis started with a vengeance a couple of weeks afterwards and that was when the stomach problems also worsened noticeably.
The Pernicious Anaemia Profile blood test includes analysis for FBC, Reticulocyte Count, Folate, Iron, TIBC, Active B12, Homocysteine, Methylmalonic Acid, Intrinsic Factor Abs and Parietal Cell Ab.
I've joined the PAS
I know I've skewed some of the results but in an odd sort of way I'm looking forward to the armfuls of blood they'll take because I now feel that I've got something concrete to work towards rather than trying load of things to see if anything had a beneficial effect. If I get a positive result, fantastic, but if not, I'll treat myself and see what happens. I gave up on my doctor years ago...
Sleepy bunny, you've been very kind and helpful to a newbie and it's much appreciated!
Forgot to say, the doctor ordered a blood test for H Pylori about 5 years ago which was negative so I did a private stool test which came back positive so I treated myself with mastic gum and the symptoms went away.
My GP only offered PPIs and a gastroscopy which I refused. I'm fairly sure I would have been diagnosed with gastroparesis a year ago but my GP just got cross with me and said if I won't take drugs he can't treat me...
It might be possible to find out what anaesthesia was used in your operation by looking at hospital records. Can be very difficult to access hospital records though. May involve form filling and a visit to hospital records office.
Are you in a position to have private healthcare as this may be a way to get a gastroscopy? I don't know if HDA patient care trust (link in my first post) may be of help. They are usually quick to respond to enquiries. A full medical history may be required.
My GP wanted me to have a gastroscopy but I really, really don't want one. (I don't need one to know that I have gastritis - I would put money on it. I want to know WHY I have gastritis...)
I wouldn't be surprised if the H pylori wasn't back again but as your link shows, they can use the breath test or a stool test to confirm.
Can they diagnose PA with a gastroscopy? Definitively? Because that's the only way I'd agree to one. (I think I may have a phobia about it)
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Apologies for the long post - I don't know who else to ask!
B12 injections stopped by GP.
B12 injections stopped
As yet undiagnosed for PA, exhausted, advice needed..
GP stopped B12 injections
B12 injections stopped by GP
