So I went to see my GP yesterday and discussed my symptoms, and asked about B12 injections. Got the same old story - test within range, symptoms aren’t bad enough, try oral B12 for three months, despite my explaining that I have low stomach acid and problems with malabsorption, which she again dismissed. Blah, blah, blah.
I can’t believe how difficult it is to get B12 injections, the GPs are happy to prescribe more antidepressants or painkillers, no problem.
When I mentioned pernicious anaemia, she said ‘oh you would be anaemic’ if you had that!
One thing I managed to get was a blood test for intrinsic factor antibody. Will probably come back negative so she will put ‘within range, no action required’. Again.
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Chickens44
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Well your GP showed her ignorance about Pernicious Anaemia by saying that “you would be anaemic if you had that . “ Quote from the latest guide lines from NICE ( National Institute for Health and Care Excellence ).on page 8 “ Do not rule out a diagnosis of B12 deficiency based on the absence of either anaemia or Macrocytosis . “
Also probably does not know that a negative IFAB test also does not rule out P.A.
To be honest, I felt I had already questioned her decisions, and she wasn’t going to budge, so felt it wasn’t worth the hassle of pushing her further.
I have only seen her a few times and she is not my ‘usual GP’, although these days it’s difficult to have a usual GP as you always end up seeing someone different. I will see how the B12 tablets do for the next few weeks. But I will print off the NICE guidelines for next time, and although I felt I was prepared, I will do better next time. Such bloody hard work though, as they don’t like it when you have your own opinion.
Your story mirrors mine exactly! "You've never been anemic because you're IFAB test was negative". They did at least acknowledge initially that I was B12 deficient but as soon as the IF test was back I was switched to oral supplements. It is SO frustrating. I have chosen to go private as I know I'll get nowhere and can't move surgeries as I'm only in catchment for mine. Like you, you can't see the same GP each time and if you did want to, it would take longer than the 4-5 weeks or already takes to see the first GP available!
I also agree - so easy to give out statins or antidepressants to everyone but not something people actually need to survive. Wishing you good luck that you get what you need 🙏🏽
There are some that have a good understanding of B12 deficiency, pernicious anaemia and even functional B12 deficiency. There are some that are willing to learn and will seek advice from consultants. There are some who are experienced and confident enough to monitor and observe and listen to patients in order to work out what treatment frequency works.
But there are also GPs who will not be able to learn because they already think they have the answers. They won't ask and they won't listen and they won't read any info. They have already decided that they know what works for anyone with B12 deficiency: IFab positive on first test: 6 loading injections, then 1 injection every 3 months. If you're lucky, PA diagnosed - although you may have to go megaloblastic first. IFab negative on first test: tablets.
Chickens44 :
Folate, ferritin, vitamin D, thyroid : these should all be checked if you have B12 deficiency. They can cause problems if low or low within range and be difficult to get to healthy and stable levels by supplementing - even if your GP regularly monitors them.
Find a GP that will listen to you; even if they start off thinking they know all the answers, they can change their mind based on observation. This of course requires a usual GP and face-to-face appointments and immediately visible symptoms (without, unasked, taking any clothes off !)
Please do NOT be tempted to deteriorate in order to prove to a sceptical GP that you will deteriorate - or to demonstrate what visible deterioration looks like. It can prove fruitless and can take a long time to get back . [I did that once with my angular cheilitis for an Oral Medicine appointment with dire results: I posted a photo a while back and called it something like "Don't laugh....." - have a look if you like]
Folate, ferritin, and thyroid all within range, but low. Also pointed out I tested positive for histamine intolerance. I asked if perhaps I should stop HRT patches as HRT can increase histamine even more, but all she said was HRT has been shown to help osteoporosis.
I did point all this out to her, which could be due to malabsorption, but she didn’t seem interested. It is so frustrating. I know they are ‘general’ practitioners, but they should be prepared to listen to their patients. I think I am being treated as a timewaster now, and no matter what I go in with, they are dismissive. But I will keep trying.
There was one lovely lady GP at the practice, but unfortunately she left.
Same happened at my surgery - post Covid, three very good experienced female GPs left the practice. One of them was my usual GP, who had diagnosed me with functional B12 deficiency and restarted my B12 injections at 2 per week.
All three have not left the NHS, but now work for hospitals instead. I think they found the move to telephone appointments in primary care as detrimental a move as we do.
I was found to also have osteoporosis of the spine. When I asked what I could do that vitamin D and Raloxifene would benefit me, the nurse told me to walk, walk, walk .... so I did. I was also given vitamin D and Raloxifene on prescription. My osteoporosis diagnosis was reduced to osteopenia on my last Dexascan. I didn't even know that was a possibility.
Since then, I broke my ankle last June, then broke my toe recently and have not been able to walk so far so often. Neither of these incidents were attributed to the state of my bones, just bad luck ! Now that the weather is warmer, I intend to get back to walking again.
Ferritin: my GP said below 60 ug/L, Oral Medicine consultant, dealing with angular cheilitis, burning tongue and saliva duct strictures (mine, not his !), preferred it to be 80 ug/L or above - not easy getting there and stabilising at this level. Especially now that regular monitoring of folate, ferritin etc etc difficult without a regular GP. Was back down to 39 in February this year.
Using the new fancy term 'Autoimmune Gastritis' gets you round the 'Anaemia' word!
At the risk of being ridiculed, the GP just might be correct. However, around 50% of cases of PA don't have detectable IFAb, however many times you test for them. It's a widely held belief that more folks are getting B12 injections than those who have difficulty absorbing.
Consider the local 'Ugly Parlour' or do I mean 'Beauty Parlour'? [Places you can go to increase the risk of Melanoma from 'Sun Beds'.] You can get B12 injections from many of these places, as long as you don't suffer from deficiency. I despair.
It’s very frustrating that gps know so little about b12 deficiency, but if you consider that this may be their level of knowledge about many other serious issues, it’s quite worrying.
It’s understandable that they don’t have the knowledge to treat everything - but if they don’t understand certain conditions in principle at least it means we have very limited access to proper healthcare.
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