I am so very confused about what to do with my situation. Anti-parietal cells have been confirmed in 2013, but I've not had treatment for this. I am repeatedly told my diagnosis is not something I need to worry about at the moment.
In terms of facts, my most recent blood test taken on the 12th June 2018 revealed my ferritin to be 31.
In 2017, blood revealed:
*B12 at 368
*Iron at 12.2
*Ferritin at 18, with a second test coming back at 12
According to the guidelines on the results, all of these figures are in the normal range, though on the lower end of the scale. I saw my doctor 2 weeks ago and explained that I am really struggling to enjoy life because of very regular anxiety, depression, confusion, brain fog, tiredness, aches and pains across my body and severe IBS symptoms. The anxiety, depression, confusion and brain fog do occasionally lift but the other symptoms are always present. I'm in my mid-twenties but have been struggling for so long I just broke down in tears during the consultation and the Dr was very sympathetic, said we will try to get to the bottom of it and sent me for the blood screening.
I was told I would be contacted once the results were in but this didn't happen so I called the practice reception who said my (above) results were 'borderline' so no action is required, but could be repeated in 4 weeks time... something I am told every time I have bloods taken.
Also, even though I informed the Dr of my anti-parietal cell diagnosis and its connection to B12 deficiency, she did not test me for B12 on this 'very thorough screening', which seemed odd after how much I emphasised its possible relevance to my symptoms.
After really checking the results over to make sure I hadn't just not spotted the B12 reading, I called the practice again and asked the receptionist if I could speak to the Dr about why B12 hadn't been tested. After a very fractious back and forth and being asked 'Why do you need to know?' my anxiety got the better of me, I gave up with the receptionist and requested a GP appointment for this Wednesday. I ended up in tears again because it just seems so difficult to get to the bottom of what is going on.
To cut a long story short, I don't know how to approach this appointment on Wednesday. I honestly feel so out of it, forgetful and low that I don't have any confidence in what I'm trying to achieve. From research, the goal seems to be B12 injections, but I am also wondering if I need to be supplementing with ferritin and iron as well. Or.. will the ferritin and iron no longer be an issue if I receive treatment in the form of injections so I just pursue the B12 injections only??
Just as a side note, I have tried supplementing with ferrous fumarate in the past, but this increased my gastro symptoms by causing constipation. I didn't notice any improvement in the issues I experience so stopped taking it.
I currently take Symprove pro-biotic every morning for my terrible tum and an HCL digestive enzyme with a shot of apple cider vinegar before meals. These provide marginal GI improvement, but its improvement all the same.
As a back-up, in case the GP doesn't support me, I've ordered my own supply of B12 and syringes/needles but the state of my mind doesn't make me feel as though I'm up to understanding the practicalities of self-injecting - though I will cross that bridge if I have to.
I've been diagnosed with Bipolar II because of the severity and frequency of my depression and anxiety, and I take medication for this but still struggle mentally.
I'm very healthy and look after myself as well as I can so it doesn't make much sense that I feel so out of sorts. I'm basically getting to the point where I think it must be that I'm an unfortunate human with a host of physical and neurological issues and that's the hand I've been dealt, so I should just deal with it. I really do not want to give up but I've tried so many things and it's getting demoralising.
I feel despondent and lacking in energy so any advice on how to tackle this appointment would be great because I fear I'll walk out empty handed (again) because of not being in a position to fight my corner. I have already written a letter to my GP using a really useful template provided by somebody on here, and I've outlined how I think I should be treated according to the NICE Guidelines.
I don't know if I have explained this very well at all, but I want to feel as prepared and informed as possible, so any suggestions or just some support would be lovely.
I am really struggling to explain things concisely so if you've read this to the end, thank you for your dedication!
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FelineGhost
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Hello. You have explained it very well and actually I think you are already going about it the right way... Seeing your GP with NICE guidelines.
You need b12 test again to see what it is now. Mine dropped in 18 months from about 270 to 133 by which time I felt like I was dying.
It's important not to supplement until you do another blood test or you'll never get a diagnosis. The result will be inaccurate if you have taken b12. It's not the most accurate test anyway and I have been told it is often lower than than the result you get.
Mental illness is often diagnosed in people with b12 deficiency and often problems get better after injections. I could hardly get out of bed and felt so depressed and about 10 days after loading injections I felt like a new woman.
Once you get your result if its not low enough for them to agree to injections, then you may need to think about treating yourself. It's low enough already actually and If you have symptoms they should treat you.. But sadly most won't. If your GP won't just ask him if he will humour you this once and give you the loading doses as you can't overdose on it... And see what happens. Good luck x
It's always a good idea to ask for a print out of all results with ranges, which you are perfectly entitled to ask for, as what some doctors consider normal is very often not normal and, as I'm sure you know, should be considered in the context of history and symptoms. Many experienced experts in PA/B12 also believe the tests are flawed as deficiencies begin to appear in the cerebral spinal fluid below 550.
In case you haven't already come across them, here are some helpful sites you may not have seen and this one particularly has important links on the psychological effects of a deficiency:
b12deficiency.info/what-to-...
The latest UK research document below has a useful summary (GP could probably access the full document (behind a paywall), which emphasises that there is no reliable test, so treatment of all neurological symptoms without delay is paramount. There's also important information re. blood tests - bottom of page 4 under 'how is response to treatment assessed'.
"Conclusion: Apparently this knowledge (and all the aforementioned) was lost over the years, as these days many physicians are not aware of the fact that neurologic and neuropsychiatric symptoms of a B12 deficiency occur without anemia and/or macrocytosis, and that a deficiency can have serious consequences before anemia ever develop. A vitamin B12 deficiency can lead to serious neurological, cognitive and psychiatric symptoms. Delaying treatment can have devastating effects. Physicians should be aware that neurological damage can occur before anemia develops, and consider a vitamin B12 deficiency when neurological and/or neuropsychiatric symptoms are present, with or without the presence of anaemia. " :
PS. It is often a good idea to take someone close with you as witness and extra support so it is not so easy to be fobbed off - I'm afraid our family experience is that, because of the way the system is set up, it is far more lucrative for the surgery to supply drugs for mental health than to give B12 injections ☹️
i am so sorry you are having to go thru this. if it was me i would ask why no b12 /folate test. then i would request them again. Also would also ask to be tested for h pylori which will cause hypochlorhydria, iron deficiency and b12 deficiency.
i had h pylori without stomach pain or heartburn, the main causes for testing. i only had lack of appetite and some nausea. after 2nd treatment was successful and i finally got a negative test result, it took several months for some healing to occur. my smooth tongue now has changed back to having little hair like (for lack of a knowing the real name) things on it. also, now i only take hcl with pepsin occassionally and usually only one, instead of up to 18 with a meal (which scared the crap out of me, as no one should be able to take that many without any stomach warmth, pain or side effects).
in my opinion only, h pylori reduces stomach acid causing overall malnutrition, even when you are trying to get all the vitamins and minerals you need thru food and suppliments.
if doctor refused b12/folate testing i would tell them i was getting ready to self inject, in a last ditch effort to get tested.
if doctor won't test for h pylori i would pay out of pocket for it because if you have it you need antibiotics.
also drinking smoothies helped me. i think the already broken down nutrition in them was all i could absorb at the time.
you can get iron by using steamed spinach (not raw) in you smoothies. sounds gross but if you put a banana in a smoothie that is the main flavor i taste.
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