Hello. This is my first post, although I have been a lurker for some time. I am 65, female, with many symptoms which brought me to this forum.
I thought I was B12 deficient about a year ago after finding information by accident which appeared to sum me up completely. So, I started taking B12, but nothing improved. I told my GP (who has never treated me successfully for any of my existing complaints over the years) and she was very sceptical but sent me for a full blood test. I told her about the vitamins I was taking... bog standard Cyanocobalamin, but she said that wouldn`t make any difference to the result. First mistake. So, the blood test came back 809 ng/l for serum B12... but only 4.7 ng/l for folate. She advised me to take Folic Acid. I upped my green veg, because I didn`t want to skew any more tests. Was that wrong? I am still not clear about the interaction between the two vitamins. I do already eat a good varied diet and feel I ought not to be deficient in either of these, unless I cannot absorb them for some reason.
Because I was complaining of digestive /elimination problems, and she will *only listen to two symptoms in a ten minute slot* , I got to see a Colorectal Consultant (on the Cancer Pathway) who promptly sent me for 3 tests. Fast forward 4 months, I have a diagnosis of, but no After Consultation for..
Gall stones... from the Ultra Sound.
Normal... from the Barium Enema.
Gastritis ... from the Gastroscopy.
These results, I just found out, my GP has been sitting on, marked "no action required" and didn`t bother to tell me...
I wanted some better (different) blood tests done, but my GP was not keen to advise me and said they were a) not available on NHS, & b) nothing from the Internet was valid and she wouldn`t look at results *if they involved a finger prick test*. Fair enough. I said I would try and get "proper ones" done privately somehow. She had no idea how I could do this, but I am quite resourceful and devious if pushed.
So I have, in spite of two GPs best efforts, managed to get some bloods booked for Monday. Full Blood Count (again), Methylmalonic Acid, Holotranscobalamin, Intrinsic Factor Antibody, and Homocysteine. Surprisingly these can be done via my local NHS hospital, but privately. It`s a well kept secret from the public. Why didn`t they know? If they knew, why didn`t they tell me? It`s quite easy to imagine a conspiracy.
I watched my poor Mother go downhill 10+ years ago with no medical intervention that was helpful. I`m pretty sure she was diagnosed with Anaemia (at least at some point) because she was told to eat raw liver when I was a child and she had severe pre-eclampsia when pregnant with me. Now I feel I`m heading in the same direction and I don`t want to be the burden she felt she was. Housebound, lame, doubly incontinent, doo-lally etc.etc.
Of course I might be totally wrong and not have a B12 deficiency or PA, sub-clinical or otherwise, but I am willing to try and get some proof one way or another...put my money where my mouth is, in other words. I also bought both the recommended Books , although I have not understood more than 30% of the information in them , I am at least trying to get to the bottom of my problems. I offered to lend them to the doc but unsurprisingly not interested. Oh, I could give you some juicy quotes. Maybe another time.
Have I done the right thing? What else could I have done? Will I alienate my doctors completely? Do I care?
I`m going to leave this now, and look forward to any comments that may be forthcoming.
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SweetorDry
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Hi fbirder, please can you supply me with a bit more info on that, like how long until the tests will likely be unaffected? I really don`t want to waste a couple of hundred quid if it won`t help my case.
The state of the nhs and the way they treat the patients nowadays...I would have done the same at least you'd have full proof on paper the not knowing while you get worse and worse is a horrible feeling... it has really knocked my confidence going to the docs..I'm new to this site to..good luck I hope you get the answers your looking for. My memory had got really bad and I had so many symptoms over the last two years that I would forget to mention half of them .people suggested I wrote them down to show to the doctor but I refused as I thought they really are going to think I'm mad if I do that but that's how bad my memory and focus was ...i would start talking forget and loose all focus and go compleltly off track. I tried my hardest not to appear silly or dumb but that's what this condition can do to the brain ..which makes it alot worse to get your point across in the aloted seven minutes you get given. Anyways good luck once again.
Thank you. It`s very difficult when they won`t actually listen to more than two symptoms, even when you say you think they are related. I`m thinking of changing mine anyway as the surgery is quite a long distance from where I live. Now I`ve upset them, they might strike me off.
I would be surprised if you hadn't got PA , reading all you have written . That last sympton- the swollen tongue , clinched it for me . Now you have to get proof . Having supplemented with B12 will give you a high B12 serum count . But if you have PA , you are unable to absorb it through your gut .When I was so unwell- symptoms of exhaustion, dizziness, shortness of breath, confusion. numb feet, a B12 serum level of 150 was revealed. It was pronounced normal ! So I took B12 sub-lingual lozenges and covered myself in B12 patches To no avail. So I consulted a private GP . In spite of a terrifically high B12 count , the Intrinsic Factor Antibody test was positive , so I had PA ! But as you know one can test negative , and still have PA . Anyhow as a result my own GP was obliged to give me loading doses of B12. Then once every3 months ( in spite of numb feet which were deemed "ideopathic " ) Tummy problems were still present . After a visit to a gastroenterologist , I tried to get a test to find out the acid content of my stomach - not possible I was told . Such a test is only undertaken under research conditions ! When I kept insisting ,the consultant told me it wasn't necessary in my case ,as PA patients all have low or no stomach acid ( Hypo or Achlohydria) for which there is no treatment. After having read up,on this I concluded that my stomach flora or bacteria had become damaged by the low acid and I had to try to restore the balance by taking probiotics . I took Symprove , which helped enormously . I now make my own sauerkraut , which works perfectly .Does this seem similar to your story ? Do press on and get some tests done privately . I wish you the very best of luck - you need it !
I think it's because they have a different agenda to their patients, which is sometimes financially based, and a different idea of what is and isn't a serious health issue, so usually we are speaking at cross purposes.
In the current system they seem to be looking for 'red flags', emergency referrals mainly, which have clear clinical markers on tests.
it seems to me the kind of multi symptomatic chronic conditions many people have (like PA) aren't really allowed for or acknowledged widely under the current system. People tend to be given anti depressants and classified as suffering from stress instead. I assume if you've seen your GP without success over the years, she thinks you are not really ill in the way she defines being ill, and this tends to stick, as I have found.
I saw an interview recently with a GP discussing the problems she faces, and she said in one surgery she might have a very urgent case with a child needing immediate hospital referral, and then a patient who has had the same stomach pain for 30 years. She seemed to be saying she didn't have the resources to manage both kinds of patient.
Thank you for all your interesting comments and advice. In spite of fbirder`s comment about the other tests not showing up due to supplementing, I think I am committed to going ahead with this now. I`m not going to get another chance at this. Certain people have kindly "pulled strings" for me to be able to access the tests. As you say, Wedgwood, if the IFA shows up positive, it will be a strong pointer in the right direction.
The swollen tongue was one of the first symptoms. Dentist hadn`t a clue, so I Googled it. Then realised I had lots of other problems which could be related to B12d.
My feet are partly numb, but that may be related to a very bungled Double Bunionectomy I got some years ago with extensive scarring. In any case, I can`t stand the bedclothes on them as they get so blooming hot. No one wants to look at those, either. (Professional guilt?) When I get migraines, they are mainly ocular... but the most recent ones have caused me to lose parts of speech as well, plus the Tactile Allodynia (wow, look that up, I never realised it had a name !) previously labelled, rightly or wrongly, Osteo-Arthritis... makes me think I have some nerve damage. Who knows if the recent sudden incontinence I now get is related ? The Colo-Rectal guy said that was due to Childbirth Trauma, thirty five years ago. :0 How likely is that? Dunno. Also, a slightly dropped foot which makes me liable to trip on uneven surfaces if I don`t concentrate. (Can`t walk, talk and chew gum at the same time!) The trigger finger and the tinnitus (all right-sided) are also annoying.
It makes me sound like a Hypochondriac, I know. But in fact I very seldom visit the doctors. Once in two or three years is a lot for me, till now. I have been struggling on, trying this and that, gradually getting worse.
By the way, Jose651, our surgery doesn`t "do" double appointments. I asked recently.
Remember when the GP used to do the good old, "Stick out your tongue, feel your pulse, look at your nails and tap your knee with a toffee hammer"? What ever happened to that?
Sorry. I didn`t mean this to become an Essay.
Fingers crossed, that I can pick up my blood test request form tomorrow without a hitch.
I was diagnosed after years of gastric issues which I discovered was a precursor to PA. After begging for regular b12 injections I joined a few online forums and learnt to self inject which made a significant difference to all symptoms. I will not compromise my health because the medical profession are constrained by lack of education, more urgent patients or as I have come to further believe profitability issues for the pharmaceutical industry. Maybe a conspiracy theory but there's not as much money in B12 as antidepressants. I use Hydroxy or Methyl injections daily, iron, folinic acid and B2 & B complex, I have alleviated most symptoms, some days are a bit flat and I'm still dealing with gastric issues but I have my memory back, no parasthesia and energy is more consistent. I've been told it's all a placebo effect by a haematologist - what an idiot. I've had enormous help from the PA forum on facebook established by Pat Kornic and recommend them highly.
Have you considered joining the PAS (Pernicious Anaemia Society)?
They are a useful source of information and can sometimes intervene on behalf of members (think this is easier if someone has a definite diagnosis of PA).
Thanks, Sleepybunny, I intend to join the PAS when I get my next results back. I will probably need their help decoding the numbers.
I have both books you mention.
No, I have not seen a Podiatrist since the bunion operation was deemed a failure. My faith in the Profession at that point was particularly low, and they were not very helpful.
But I will bear it in mind. Any port in a storm, eh?
I assume if they are NHS podiatrists then potentially free? I think podiatrists probably come across patients who have neuropathic symptoms in their feet due to diabetes and other conditions that affect the nervous system.
Gastritis diagnosis ... but what kind of gastritis? Could you write and ask for a copy of that diagnosis? Gastritis caused by h pylori, has that been ruled out? Or autoimmune gastritis, which may lead to PA?
My daughter was supplementing b12 to the end of the summer academic term, then stopped all summer, when tested in oct she was down to 159, so I think you might be fine.
@ Aspmama. I have the report. I asked the Gastrologist(?) who was doing it if he could tell if I had low acid or high. He said yes, but it wasn`t on the report, so I still don`t know. It said "chronic gastritis with features of lymphocytic gastritis. No H.pylori ... " Don`t know if that`s good or bad because I can`t get hold of the Consultant or his secretary, who seems to be permanently on holiday or "not at her desk", for a follow-up appointment . If it was H.Pylori, I could have been given antibiotics, but nothing else has been forthcoming.
However, being thoroughly Fed Up with feeling bloated and miserable, I got some raw Apple Cider Vinegar. I`m still taking it and it all seems to have calmed down, as long as I don`t eat too much too late in the evening....or wear a fitted bra. (You will either know what I mean or you won`t !)
Hopefully, from what you say about your daughter`s test, I may have cleared out the Extra useless B12 in my serum (?). Thanks for that ray of hope.
By the way, for anyone who`s dreading a Gastroscopy... they`re not that bad at all. I`m a shocking coward and it was a doddle, but DO HAVE ALL THE DRUGS they offer then you won`t care. It remains to be seen if it was a complete waste of time or not.
So did he then rule out celiac? Did he test for it? And if it only "had features" of the rare lymphocytic gastritis, this isn't a definite diagnosis, could it in fact have been chronic atrophic autoimmune gastritis?
I think the gastritis strengthens the possibility of B12 being the problem.
In the meantime, if celiac has been ruled out, you could try g free.. if you haven't already.
*Whoop de Do.* I got the blood tests taken this morning...I think it was a whole armful !
Hi Aspmama
I believe I had a test for celiac some time ago when all this started, and it was negative. Bread however really blows me up and I try not to eat much of it.
It is annoying to have had a test (gastroscopy) and not really be much the wiser. I could have told them I had "indigestion" if that`s all "gastritis" means. I am grateful they didn`t find anything malignant as I have suffered IBS (that good old dustbin diagnosis) for many years. My GP was ( is?) a Gastrologist and he told me that "most of the patients he saw present with Gastritis and it means nothing" (with regard to B12). He also said B12d diagnosis was "contentious". No sympathy, there then.
PS. One of the reasons for some of the difficulties with medics is that there is no link between pay and results. They all get paid whether or not their patients improve.
Hi, You have all my sympathy.. and I understand exactly how you feel about overpaid and uncaring GPs! They're in for money and status... patients as by the by!
They are ignorant and are not prepared to do more than is barely necessary... if that... Furthermore, they are not prepared to change the status quo... I have had battles for years to make things moving, regarding many serious problems. I once mention need for B12 injection because am feeling as though I am about to collapse all the time and I have fainted several times, once in the garden and just sitting down in sitting-room... This country does not look after patients very well... especially if passed retirement age.
Please let me know if you are successful... and good luck to you.
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How long to recover from 'not-anaemia'?
Update. Difficult but success with more treatment
Did i ever have Pernicious Anaemia?!
B12 very high with normal blood results?. 
