I’ve had unexplained fatigue and neurological symptoms for 10+ years. I recently found out about PA. The symptoms fit my profile and when I mentioned PA to my mum she remembered that two of my great aunts had it. I have Hashimoto’s and psoriasis. So it looks like PA is worth investigating.
I got an appointment with a neurologist which is in 3 weeks.
My concern is that I take multi-vitamins that include a high dose of B12 (2000% RDA). I have read that you should stop taking supplements 4 months before a test so I’m worried that it may already be too late to stop taking them without compromising any results.
If it’s still worth stopping them 3 weeks before a blood test, I would. But because doing so would make me even more ill, I only want to stop taking them if it would help a diagnosis. So I don’t know what to do. Any advice would be greatly appreciated. Thank you.
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Harpee
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It depend how long you have been taking B12. If it is a long time I think three weeks isn't enough time to drop your B12 levels to the ridiculously low levels that the medical profession demands to prove you have B12 deficiency.
But everyone's body is different and it may be enough time.
However I don't have great faith in doctors. Finding one that knows about B12D is very rare. Please don't build your hopes up. Most of us have had very bad experiences with neurologists. Make sure you go to the meeting with masses of information to back you up. And, if you're lucky, he won't be too arrogant to read it.
Thank you very much for the warning. All my GP wanted to do was to offer me counselling and I had quite a battle to get the referral off him. I naively thought that a consultant would take me more seriously. Forewarned is forearmed, so I really appreciate your advice. Thank you again.
I don't understand why you had a battle with your GP if you are paying to see a consultant. It doesn't bode well for the future. Looks like he's a B12D skeptic. I think even if the consultant does diagnose you with PA you will have problems getting the right treatment from him.
This is the scenario most of us find ourselves in. Which is why this forum is so crucial. It gives us the help we aren't getting from our GPs.
IMO you are wasting your money on the consultation. The odds are heavily against you getting diagnosed correctly. You'll probably get diagnosed with FND, ME or depression. .
Yup. I had given up on doctors completely. However, I recently had surgery where they removed part of my jawbone. I was on a huge dose of codeine and other analgesics and my jaw didn’t hurt, but my long term pain in various other parts of my body still did. At that point, I realised the long term pain was probably neuropathic as it wasn’t responding to analgesics. So thought, in my nativity, with this new information, a GP might be interested. I wrote my symptoms down on paper and he wouldn’t even read it.
He offered me counselling for anxiety and when I said I wasn’t anxious, he offered me pain management. When I asked if the pain management would help with me dropping things or getting words wrong, he said that there probably wasn’t a medical cause. I asked if I could see a neurologist and he said they probably wouldn’t find anything, so I asked for a private referral. He did this, but the referral -which says that he’s explained to me that they probably won’t find anything - is passive aggressive to say the least!
Rant over. Yes, I see another point of this forum is to be allowed just to dump with people who understand. It helps! It is the first time I’ve posted on a health forum and I’m glad I did.
I agree that the neurology appointment is most likely a waste of time and will probably cancel. I will have private blood tests done and take a decision based on what they show. I now think a gastroenterologist would have been a better bet, but I couldn’t afford a private endoscopy. As a matter of course, my doctors surgery order vitamin D along with my regular thyroid blood tests and it always comes back deficient, which has puzzled me as I take high dose vitamin D supplements. I read about chronic autoimmune atrophic gastritis and it did say that it can cause vitamin D deficiencies. I also have unexplained stomach pain.
There is a more humane GP at my surgery, so I will ask specifically for her next time.
Are your symptoms consistent with B12 deficiency and has your GP got a list of all your symptoms? I used PAS list below and added extra symptoms to bottom of page.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
It's vital to get adeqaute treatment for B12 deficiency. Delayed or inadequate treatment may increase the risk of developing permanent neurological damage. In severe cases the spinal cord can be affected.
PAS have a leaflet about SACD, sub acute combined degeneration of the spinal cord.
I urge UK forum members to track down the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England and Health Board in Wales/Scotland.
If you can't find them by an online search or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Some of these local B12 deficiency guidelines in UK are not helpful. See 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 (1000mcg or higher) and some as a last resort, try self injection (SI).
Gosh, Sleepybunny, thank you so much for all of this. I’ve been slowly reading through and digesting it this morning. It is very helpful and I really appreciate you offering me all this information.
Yes, I am in the UK. I only just discovered PA and reading about it on the society website made me wonder if I have it. I match a lot of the symptoms, related conditions and family history.
My B12 was tested in 2017 and it was 262, which didn’t trigger any further action. I would have been on multi-vitamin supplements at the time.
I’ve been trying to find out what’s wrong with me since 2007. I gave up for two years after a rheumatology referral came to a humiliating dead end, but after a batch of new, mainly neurological symptoms, I’ve just had another go. My GP told me that my issues may not have a medical cause, but reluctantly gave me a private neurology referral. I now realise that might be a waste of time and money as well. I’m thinking of getting a private intrinsic factor antibody test - I know that a negative result wouldn’t rule out PA, but a positive would be something to take back to my/a GP. Still pondering it all.
I had symptoms for many years with many neurological symptoms, collected a load of rubbish diagnoses such as hypochondria, psychosomatic symptoms, MUPS, medically unexplained symptoms, told it was depression causing my physical symptoms and other diagnoses I didn't agree with....maybe you can relate to some of this. I certainly had some humiliating dead ends with doctors.
The experience of trying to find out what was wrong with me has been traumatic at times.
I had one set of B12 loading injections in past when my serum B12 was well below range, below 150 ng/L. What I didn't know at the time is that the injections should have continued. I had dementia symptoms and spinal symptoms in my 40s although I seem to have avoided SACD, sub acute combined degeneration of the spinal cord.
If you think it's PA/B12 deficiency, you may need to really fight hard to get proper treatment. NHS refused to treat me even though I had over 50 typical symptoms so I was forced to start treating myself....it took a few months for my symptoms to start improving because I had been left so long without treatment.
I tried hard to educate both GPs and specialists I saw and kept asking if it was B12 deficiency, gave them B12 books, research etc, symptoms lists but they didn't listen.
"I’m thinking of getting a private intrinsic factor antibody test "
A high street chain of chemists (not Boots) offer B12 tests including intrinsic factor antibody (IFAb )test. NHS GPs often won't accept results from private tests but a significant result in a private test should nudge them into ordering the same test.
Neuro appt
I hope you have a kind neurologist who really listens. Maybe take a list of symptoms, (PAS checklist below is good )and tell them about your family history of PA.
Perhaps ask the neuro directly if it could be PA causing your symptoms.
If neuro says no then ask them why they think it isn't PA.
Seeing a specialist does not guarantee better treatment or getting someone who understands B12 deficiency.
I suggest you are well prepared for your appointment and if you have time, read some of the articles about wrong ideas about B12 deficiency and UK B12 documents I posted in case your neurologist is one of the ignorant ones.
In UK, people who are symptomatic for B12 deficiency should be treated even if serum B12 is within normal range.
Summary of BSH Cobalamin and Folate Guidelines (UK document) includes the statement
"In the event of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
If you have the time and energy, try hard to track down the B12 deficiency guideline your ICB or Health Board is using before your appointment as GP and neurologist are likely to refer to this for diagnosis/treatment advice.
Thank you again. There’s lots of good stuff here for me to look at. I can already see that my GP is not following NICE guidelines! I will get the blood tests and take it from there. Much appreciated.
Getting some private tests done is a good first step. You'll have a baseline to compare to later on.
The most important tests for PA are: serum MMA, urinary MMA, homocysteine, intrinsic factor antibodies (GIFA) and the one you've mentioned, parietal cell antibodies (GPCA).
The last 2 tests can be problematic - you may need to repeat before getting a positive result. I can't explain myself, I'm too ill, but others who are more experienced can hopefully comment on that - Sleepybunny ?
I have also read that a pepsinogen test may be useful in diagnosis of PA.
Search online for "pepsinogen test pernicious anaemia".
If you search online for "uk pepsinogen panel test" it shows a product used for diagnosing H Pylori infection and gastritis. AMAG, auto-immune metaplastic gastritis is a form of gastritis associated with PA. I'm not sure if this type of test is used by NHS but may be available privately.
The Schilling test used to be used in UK to help diagnose PA but is no longer used. May be available in other countries.
Indirect bilirubin levels and serum lactate dehydrogenase may also be useful. I've read that both may be raised in PA.
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Would blood tests 3months after last b12 injection be accurate?
GP not listening
Have your doctor got a right to stop your B12 injection for 6 months with pernicious anaemia.
