I suspect I have PA but as with a lot of people here, no-one seems to take B12 deficiency seriously. I also have hypothyroidism so as my symptoms got increasingly worse over the past few years, I blamed my thyroid - the two conditions have many symptoms in common. My thyroid problem went untreated for 3 years because of 'borderline' test results (despite having full blown symptoms) and I suspect I've never been on the right dose of Levothyroxine. I did see an Endocrinologist once after 5 years of trying, who agreed with me that I was being under-dosed.
Anyway, back to the B12...I work in a cardiology department so am surrounded by consultants, cool considering I had a heart attack two years ago. Despite having a stent, I was getting increasingly breathless again, with chest pain, so saw one of the Cardiologists. I'd already had 2 check angiograms since my stent, nothing wrong with the ole coronaries. By chance, I was chatting with one of the nurses 10 minutes before my appointment, who has pernicious anaemia and was telling her about the breathlessness, chest pain, chronic fatigue, brain fog, headache, 4 months of a continuous tic in my eyelid, tinnitus, restless leg syndrome, insomnia, etc. and she suggested getting tested for B12. The doc, being a colleague, was quite open to this so I had my bloods done.
The results came back as:
"*** has had a few of her investigations. Her serum folate is normal at 3.8, B12 is ever so slightly low at 132 and the ferritin is normal at 145. Her vitamin D is only 22 suggesting some vitamin D deficiency. I would recommend to *** that she gets some OTC vitamin D. The B12 is probably neither here or there, but need repeating in a few months' time."
Fast forward, I was prescribed high dose vitamin D tablets for 10 weeks, then OTC vitamin D daily for life, by GP. I started self-injecting B12, every other day for 2 weeks. After the 4th injection, I had a blood test at the request of GP, and B12 was 871ng/L. I felt great, told her I felt the best I had in 2 years, everyone at work commented on how much better I looked and sounded. GP flipped out when I said I'd been self medicating and said don't have anymore for 3 months then retest. Well, I now feel really cr@p again and have already bought in some more hydroxocobalimin. I requested bloods again from my consultant 2 weeks ago and B12 is now 577ng/L. Is it it normal for B12 to deplete so much within 3 months? I'm assuming that after 7 injections over 2 weeks it would've been slightly higher than the 871ng/L result taken at the surgery? I take B12 tablets too so all bases are covered but think it's a malabsorption issue - I've been on Lansoprazole for donkey's years (GERD, hiatus hernia), on HRT for 26 years (early menopause) and the hypothyroidism, all markers for low Intrinsic Factor. Maternal grandmother had pernicious anaemia and I suspect my mother did too.
I welcome any advice on how to proceed, bearing in mind GP is not on board with my (self)diagnosis so I won't get any help there and I'm too tired to argue. 😴
Many thanks in advance. 😊
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Grannypants
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A 132 reading in a B12 blood serum reading is not “ ever so slightly low “ . It is very low , bearing in mind that up to 80% of the B12 content can be inactive, therefore unusable . Did you see the written results ?
You have thrived on B12 injections , so I would start injecting again . For me it was too great a battle with the doctors and I’ve now been self- injecting for 10 years .I have pernicious anaemia ( positive Intrinsic Factor Antibodies test ) It’s cheap and convenient . to self-inject . Very best wishes
I cannot understand that your doctor said that the NHS doesn’t do the IFAB test . Of course they do . But , I got mine by going to a private doctor at a Nuffield Hospital. My NHS doctor accepted this . Luckily my test was positive . About 50 % of PA patients get a negative result . and may need a few tests for the antibodies to be discovered . So a negative test does not necessarily mean that you don’t have P.A
But if you are displaying symptoms of B12 deficiency, the NHS will do the IFAB test . You will need to be persistent .
5 years of persistance once I knew what it was and a social worker to get a change of go what tests will Nuffield do how much and will that help thanks so mucu
This is when there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops B12 deficiency symptoms.
MMA, Homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency.
Has your GP got a list of all your symptoms?
I used PAS list below and added extra symptoms at bottom.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
B12 documents
Search online for this UK document "NICE CKS Anaemia - B12 and Folate deficiency" and read it thoroughly including the Background Information section if you have the time and energy.
Try to find the local b12 deficiency guidelines used by your ICB (Integrated Care Board) in England (Health Board in Wales/Scotland) and compare them with NICE CKS document.
If you can't find them online or by searching forum posts here then best bet is probably to submit a FOI (Freedom of Information) request to your ICB/Health board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Some local B12 deficiency guidelines in UK are not as helpful as they should be. See blog post below.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
It's vital to get adequate treatment. Delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases the spinal cord may be affected.
PAS article about SACD, sub acute combined degeneration of the spinal cord
You have demonstrated that you have b12 deficiency by the blood result, your symptoms and your response to b12. You GP is a control freak and clearly isn't caring for you. I would recommence your self injections and with regard to b12 ignore your GP.
hello Grannypants, most gps are 'misinformed' regarding B12deficiency/P.A.
GP 'flipped out', well discounting the fact she is wrong, how dare she abuse you so. quite unnecessary. I take the view its my body so I will s.i. if I wish to. Subtext: to provide the treatment I need.
Your Serum B12 and folate results are Low. Your ferritin is raised suggesting B12 deficiency / inflammation. Plus you have family history; this 3 months has no clinical basis. With neurological symptoms eg NICE say alternative s.i. on alternative days. Many inject more frequently.
With malabsorption/P.A. tablets will be ineffective.
All medical reports say testing after B12 injections is unnecessary. The total Blood serum will of course be high, but only Active B12 blood test gives result at cellular level.
So please self inject asap, at frequency necessary for your symptoms - you have already proved to yourself this works. Change gps / try seeing other gps and refuse future B12 blood tests as pointless.
Hi Grannypants, (cute name). So sorry you're going through this. It sure sounds like PA. It does share a lot of symptoms with Thyroid issues, as well as MS and many other autoimmune conditions. If you aren't worried about an accurate test to prove PA, then i would just selfinject as needed, per your symptoms, and get on with life. But if you need to have proof of PA, then i would ask for more tests like the IFAb, homocysteine, MMA, MPV, etc. However, b12 injections can muddy the waters for some of those tests. Your b12 readings will go through the roof, which freaks some doctors out. But it is normal. If you aren't worried about proof, then i would selfinject. If you do want the proof, then it would be best to not have any supplemental b12 for at least 30 days if not more like 90. Especially for the IFAb intrinsic factor antibody test. Knowing for sure, and having it on your medical records would be best for the future. But you also need to feel better, so it is the b12, catch 22 situation, many of us had to deal with. Inject and feel better, or wait for accurate tests first? You already started injecting, you would have to stop for a while until you were depleted and then test.My doctors would not accept my positive IFAB test because i already had injections. So i chose to deplete myself and take it again. It worked, barely, but it was hard to go without for 30 days. An MMA (methylmelonic Acid) and MPV (mean platelet volume) test would help as back up proof. The MPV test would show macrocytic anemia, which i have but since it is only a few points too low, they refuse to see that im anemic. Even after injecting for close to 3 years, my MPV is still low and they refuse to think anything about it. But i know. We're dealing with doctors that are not educated in B12 D, so proving to them seems fruitless. Having proof on your records is helpful and one less battle to fight. But it doesn't suddenly make your doctors smart about b12d/PA or accept that you inject more than once a month.
Tests or no tests, my guess is you have PA. Especially if your grandmother had it. My grandmother also had it and died of stomach cancer in 1972. My mom, my aunt and my cousin so far all have b12D but not PA. But even that isn't enough proof for some, but it's enough for me. It took 44 years for me to get a proper diagnosis, by that time i had advanced symptoms and SACD.
My doctors could care less. They're still just as uneducated and refuse to learn more to help me. I had to educate myself to save my own life. It has been hard. But this forum is what helped me fight the battle. I now inject everyday, oftentimes twice a day. I still struggle with moderate SACD symptoms everyday. B12 is the only treatment.
The test for intrinsic factor antibodies is definitive for PA. But at the levels you describe you should not have the need for extra B12. B12 deficiency can be involved in the nervous symptoms you describe, but could be a raft of other reasons too. Suggest you seek alternative medical advice, but then again I am a complete medical sceptic. Whatever works to give you relief is good in my book.
A positive IF test is definitive for PA, but a negative is not definitive for not having PA, which I'm sure is what you meant. And you can have a B12 deficiency at any serum level, sadly.
I think you already know what the answer is, continue to self inject until your symptoms are abated. Obviously you are deficient, or you would not have found relief. I also have doctors who keep telling me to stop injecting so much, but I know my body better than they do. So I buy my own and inject what I want. Have you had an intrinsic factor antibody test or a parietal cell antibody test? Testing your B12 levels are not enough. Get your iron tested, as well.
Hi, lots of good advice already about the B12 and folate, but the bit about OTC vit D 'daily for life' is worrying, so please don't do that. Your D was very low, and you had 10 weeks high dose and then 3 months or more of OTC? Should have been retested to see how well you are absorbing, as people vary enormously. You may need a higher dose OTC or a lower, or none at all (and you can get too high with D). Ideally you test, supplement as needed and retest until you get a feel for your own requirements with whatever form of supplement you are using. But long term with no follow-up test at all - no, please not.
There are various causes of B12 deficiency other than PA. Your low b12 may be due to your taking Lansoprazol which is a ppi. These reduce stomach acid which means you can’t separate b12 from your protein. If it’s due to the ppi then b12 tablets may work. So maybe discuss this possibility with your doctor.
Go back to the every other day injections! It sounds like they were working really well. They won't do any harm. Once you get all the symptoms cleared up, you could try spacing them out some more until you find your maintenance spot- a place where your symptoms do not come back. If you read the posts in this forum, you will find it is extremely common that people are not getting enough B12 because doctors are not treating PA effectively.
Thanks everyone for the replies, it's greatly appreciated. There's a lot of information for me to take in and I'm working my way through it! I still work full-time (not sure how I've managed the last two years!) and days off I've usually got no energy to do anything but hopefully that'll change soon.
I've resumed the injections and feeling better already...even did some housework on my weekend off!
I have just been reading your story. I have a telephone call booked with my GP tomorrow as I want to have B12 injections. I know he’s going to say ‘oh your levels are within range’. But the last two readings in September 23 and March 2024 were 168 and 213. Previous readings were 300 - 400. I was on omeprazole for about 15 years, and was never told it could cause low stomach acid. I was also taking a mebeverine for IBS. I stopped the omeprazole at Christmas and have just stopped the mebeverine. I do believe they have had an effect on my gut health. I am also on sertraline, (and was taking amitriptyline for pain, but stopped after four weeks). It’s all very well the GPs looking at one symptom and giving your pills, but they all go have an effect. I wish they would look at the bigger picture.
I have done a load of tests myself and I have high pH, which signifies low stomach acid. Also I have histamine intolerance, which is indicated by very low Diamine oxidase in my gut. I also have low good gut bacteria. So all these pills I am taking don’t work because my gut is not working properly. And it’s probably the pills that have caused it!
I do hope he will agree to give me injections as it’s no good taking supplements as they won’t be absorbed due to my gut dysbiosis. It is all a difficult battle.
Good luck, I hope you get somewhere with your GP. I've given up and resigned myself to buying my B12 online and injecting myself. I've cut down my daily dose of Lansoprazole but I can't stop it completely due to other drugs I'm taking, it would cause havoc with my stomach. It's frustrating having to jump through hoops to 'prove' you need treating.
I'm seeing my new GP in 2 weeks, I insisted on a face-to-face appointment, fingers crossed she's a bit more enlightened! Let us know how you get on 🤞
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