I received a second lot of blood test results today from my G.P surgery. In August I had my Vit B12, Ferritin and Folate done. They were in Aug - B12 157ug/L (range 150-620) Nov - 155ug/L
Ferritin in Aug - 16ug/L (range 15-200) in Nov 19ug/L
Folate in Aug - 3.6ug/L (range 3.1 - 19.9) in Nov 4ug/L
I have been told both times they are within range, but my G.p said today 'you could have 6 injections if you wanted?'
I have had Heliobactor H Pylori and Nodular Gastritis in the past and because of this I asked my doctor if I could have the anti-intrinsic factor, homocysteine and methylmalonic acid tests, her reply was why? and what for?!!
I'm suffering with alot of symptoms and a bad tummy with pain is one of them. I'm a little worried about cancer I suppose. Any ideas how I should approach my G.P about this?
Thank you
Love Bernie x
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crista1
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I paid privately to see a haematologist, got numerous tests and it resulted into referral to neurologist (MRI) on NHS, only paid for the initial consultation, was very worth it for me.
There are enough documented cases of clinical B12 deficiency in the so-called 'normal range' for guidance in the UK to be to treat on the basis of symptoms not test results - so definitely take the 6 shots - though if you have neurological symptoms (eg pins and needles) the correct treatment would be shots every other day until symptoms stop improving
As evidence for treatment on basis of symptoms refer to BCSH guidelines - summary of recommendations on p2
I have a lot of symptoms. It was the nurse at my g.p surgery who told me she wasn't happy my g.p had the first time I was tested told me I was alright in relation to my bloods. She said I obviously had clinical symptoms and was ordering more tests (3 months after the first lot). I was told the same thing again by my g.p in relation to the second lot. Stupidly I didn't print the guidelines off for my g.p but I will definitely be doing this for my next appointment.
Thank you.
155 is a very low result for B12. The test is flawed and the range varies - it has recently been put up to 220 in Bath. I have been informed by registrars in one hospital that the B12 result varies even on the same day and I have PA and certainly I was within the "normal" range but was very ill. Go by symptoms not the B12 test - if you feel the fog lift after your first injection you have a deficiency. Then it is a case of getting enough B12 until you feel well again. Note if you have PA you may always have bad days and the symptoms never completely clear but certainly my extreme symptoms (I had paranoia twice!!!) will go. Now my symptoms are mainly fogginess and a general lack of clarity together with anxiety and occasional lapses in memory (which may be for other reasons). There is a feeling of "wanting the world to go away" and wanting to seek calmness, peace and security. However this is not constant and definitely comes and goes. I am injecting weekly, taking extra folic acid and iron (as well as levothyroxine for an underactive thyroid) and also a multi-vitamin. I am not very energetic.
I have been up and down - today I felt as normal as I ever did and had a good day at work (although I did at one point think it was Friday). Yesterday I suffered with fogginess but still managed to do a day's work.
Good luck and don't let your GP be the expert because they don't have enough knowledge - you will need to look at all the websites yourself and glean as much info as you can. Start with PAS - they have a list at the bottom of the page of all the B12 deficiency websites.
My third GP was good enough to give me H.Pylori antibiotics even though there isn't it seems a clear test for this. They made me ill but I think afterwards I did feel better than I had done previously and certainly I don't get a bloated stomach anymore. Testing strongly positive for parietal cell antibodies means that I also do not have hydrochloric acid in my stomach hence bacteria/fungi can thrive. I take garlic tablets too but am not sure if they are beneficial it is hard to tell.
Note that the intrinsic factor antibodies can come and go - they may be present and destroy the present intrinsic factor but then once their role diminishes they diminish - so you may be tested negative but actually have had them in the past which will cause a B12 deficiency. I have never managed to have an IF test but my diagnosis was made on testing strongly positive for the parietal cell antibodies which destroy the parietal cells in the stomach lining which produce IF and Hcl.
I have most of the symptoms you mention. Suffer with anxiety and depression plus other conditions. I had the pylori and nodular gastritis (severe) in 2008 and had the triple therapy. Was Vit B12 def then at 126 (no treatment) and Vit B12 def in 2009 at 141 (no treatment). Both found at hospital during tests, but nothing said apart from borderline low!!!
I'm wondering whether I am PA, but when I asked my g.p if she would agree for me to be tested for it in London and would she do a referral she said no?
I have I'm afraid said to my partner that if anything happens to me he is to look at all my medical notes and take things further. I have been constantly upset by the NHS this year who have made me question my own sanity.............(that was me screaming) *@* (now I'm calm) x
Remain calm it is difficult but the world is still flat in the medical profession when it comes to B12. A parietal cell antibody test is just a blood test - I was referred to gastroenterologists initially as my GP put me on a red flag pathway for bowel cancer (which to be fair it could have been) due to my extreme iron deficiency and blood in the stools (which was due to bleeding piles). I had a gastroscopy, colonoscopy, barium enema and barium meal. IT WAS HORRIBLE!!! They said they couldn't find any bleeding and wanted me to swollen a camera tablet - I said no! I was sent home with a bottle of iron tablets. After a while I still didn't feel right (mainly mentally) and I was also sent to a psychotherapist (who actually wanted to see my husband)! and then when she said I was fine I was put on anti-depressants. I took these for a few months. I still didn't feel right.
I did some more research myself into my thyroid condition as everything in the past had been down to that. I noticed how similar my symptoms were to other auto-immune conditions and I do have a strong family history of them (I had a great aunt with pernicious anaemia). I went to another GP and suggested that maybe I was getting enough thyroxine (I took my morning temperature for a couple of months but to be honest it didn't prove much). The second GP looked shocked and did a blood test straight away to check my thyroxine (I was within normal limits whatever that now means) and then she sent me to an endocrinologist. When I got to him I suggest that either I wasn't getting enough thyroxine despite normal blood results or that I could have another auto-immune condition. He ran tests for all the common auto-immune conditions and I tested strongly positive for parietal cell antibodies. My serum B12 was 189.
It was then a long journey to getting enough B12 but much help from Martyn Hooper and others at the PAS made me realise I was not alone and that I was also NOT INSANE!!! It is the rest of the world that need to wake up to this. At my worst point I had a voice in my head that told me to get up in the middle of the night and burn my poetry!!! My husband found me in the bathroom with a box of matches!!! In the news this week a lovely girl has just thrown herself off a cliff with her baby due to schizophrenia - I think that the fact that the serum B12 test is utterly nonsensical bears huge implications for anxiety, depression, bipolar and dementia. THE MEDICAL PROFESSION NEED TO ACT URGENTLY ON THIS FOR HEAVENS SAKE!
I have been campaigning ever since my diagnosis for recognition that this needs further scientific research and that the serum B12 test needs to be recognised as flawed. I have also helped a friend who was wrongly diagnosed with "ME" and given a wheelchair instead of B12 and her thyroid was overactive.
Mentally I have been quite well (apart from foggy moments) since B12 injections. No more craziness and we have been under a lot of strain here too. So doctors that put it down to stress don't realise what that really means. Stress with B12 is one thing, stress with no B12 is quite another.
B12 is used in the mitochondria to drive the ATP to ADP reaction which realises energy - this is why when we do not have enough we are tired. B12 is also important in the methylation process (important in prevention of cancer). B12 is important in forming the myelin sheath on nerve cells (why my fingers couldn't thread a needle like they used to - others have falls). B12 is important in the formation of serotonin and dopamine - with folic acid and B6. Which is why I went mad - it is called "megoblastic madness". B12 is stored in the liver but when a hugely stressful event occurs this causes sudden depletion and if liver stores are already low then a depletion in serotonin/dopamine occurs. It is like cake making - think of B12 as the eggs. If you don't put enough in the cake doesn't rise. If you don't have any eggs the cake fails.
The biochemical pathways are complex. There can be mistakes in the genetic pathways in different places. This goes way beyond what a GP can cope with unfortunately our health service is not yet that sophisticated. I worked in the NHS for the last few years and believe me it is not sophisticated.
I am lucky to have managed to get a diagnosis and sort out my treatment to the point where I can function pretty normally. I hate to think where I would have ended up if I had remained on the anti-depressants, deterioration would have continued.
Insist on having a test for parietal cell antibodies if nothing else to rule that one out. Let your GP read all this. Tell him/her to read Martyn Hooper's books and Sally Pacholok's "Could it be B12 an epidemic of misdiagnosis".
The medical profession need putting in a paper bag and shaking up as my nana used to say (not all, but those who remain blinkered in relation to the damage undiagnosed PA and B12 deficiency does to people).
I love this Haynes ''It is like cake making - think of B12 as the eggs. If you don't put enough in the cake doesn't rise. If you don't have any eggs the cake fails''.
I've defo been feeling like that. Lots going on, but feel like I'm not really being listened to!
BUT I will insist on the tests to rule out the rest.
I'm happy that you managed eventually to get the help you needed and your on the right path with your health.
Thank you for campaigning for the recognition of this condition and its effects which left untreated are shocking.
Just an aside re H. Pylori. I had this tested, twice, in the past and was positive both times, and treated both times, with VERY strong antibiotics. Personally, I wouldn't recommend it. There is growing evidence that H. Pylori plays an important role in the gut and it is not responsible for ulcers and other things it has been blamed for. There is some evidence that it plays an important role in fending off stomach cancer for example.
Anyway, for me, the antibiotics destroyed my intestinal flora and I feel that it still isn't right now, several years later. They did zero good, since I didn't have an ulcer anyway (I had gallstones!) and I think they caused more harm than good. I'd seriously think twice about messing with H. Pylori treatments - most people are walking about with a gut full of H. Pylori and they are perfectly healthy.
This is interesting. I have a book "Chronic Gastritis and Hypochlorhydria in the Elderly" Edited by Peter R Holt and Robert M Russell ISBN 0-8493-6970-3 and I quote on page 70 "It is clear that H.pylori causes chronic active gastritis ".
It is probably the bacterium that causes the destruction of the stomach lining and one of the causative agents of the parietal cell antibody - the immune response going wrong and destroying the wrong thing. There are several types of gastritis and the editors of this book are also calling for more research.
Remember that once the parietal cells are destroyed then there will be no further production of parietal cell antibodies.
Also note that there is little research on regeneration. It is clear that sometimes the body can regenerate. My dentist jumped up and down for his trainee to look at one of my teeth which had regrown which he said years ago would have been filled. The timing of this fitted with my iron/b12 treatment. I don't believe the parietal cells regenerate once destroyed but no-one really knows much about it all it seems.
Why is there so much research in some areas and yet this seems so crucial to mental health - and yet so little research seems to be in progress. Either that or the pharmaceutical giants are keeping it hidden due to sales of anti-depressants being threatened.
Another thing is that a few years before I got really bad I had some terrible bouts of diarrhoea which my GP at the time said was IBS. I thought I had caught something in the swimming pool from accidentally swallowing the water (I am not a good swimmer!). I was not given any treatment or tests for IBS. I spent several years trying to work out what foods caused it. I now believe that it was H.pylori (or maybe another bacteria) that then led to the PA. It took several years to get to the stage of megaloblastic madness.
As for good gut bacteria - there are so many bacteria all around us all the time - the minute you eat anything you are ingesting bacteria so the gut will soon recolonate. Yogurt especially is made of bacteria. Low acid in the stomach means the bacteria are not killed by acidic environments as they would be in a normal stomach.
I ate a meal of badly cooked salmon along with 4 other people. I was the only one who was really ill and I believe it was because I have no stomach acid.
I suspect the antibiotics I took as a child for earache also played a part in all this. There is no reason why one lot of treatment for H.pylori will eradicate it or that you won't get reinfected.
As with the serum B12 test being inaccurate so we need more research on H. pylori and other stomach bacteria.
Hi Haynes, I'm not sure how valid it is to talk about being reinfected with H. Pylori since many people wouldn't call H. Pylori an infection. As I say, it is rapidly being dismissed as the culprit it was once thought to be. Originally, when it was first 'discovered' as being the villain of the piece, in ulcers, the Australian doctors who made the connection were sneered at by the medical profession. It took years (we're talking fifteen or twenty) for their research to be accepted, then they were lauded as geniuses. Some time down the line now there have been many holes discovered in the H. Pylori as villain argument and once again doctors are rejecting it. It has since been proven than it doesn't always cause ulcers, and, as I say, many people are walking around with a gut full of it quite cheerfully. Worse, it was discovered that killing all the H. Pylori in your gut led to a higher incidence of stomach cancer. That is, if you had had an H. Pylori treatment you were more likely to get stomach cancer. Those are not good odds.
As for repopulating the gut after treatment, I'm afraid it's not so easy as just 'eat a yogurt'. There is a HUGE range of gut bacteria and they all live in a careful symbiotic arrangement. Much of your gut flora is in place before birth, taken from your mother. Any antibiotic disrupts this dreadfully and it takes years to fix it. Antibiotics are great, lifesaving, but they shouldn't be used for anything unless it is absolutely essential. There is enough doubt about H. Pylori's role in the gut to advise extreme caution before nuking it with some of the toughest antibiotics around.
I wasn't saying eat yoghurt you said your intestinal flora had been destroyed by the antibiotics for H.pylori. I was merely pointing out that there are bacteria everywhere - you will never have a totally "clean" gut it is not how it works.
I have never had an ulcer - I have pernicious anaemia which is quite different.
Trust me, H. Pylori treatment cleans out the gut! I was there. Obviously it will only stay 'clean' for a short while till new bacteria are reintroduced, but it does definitely clean it out, and it's a slow process to bring it back up to speed, as all the different bacteria not only need to be introduced but establish a balanced colony again.
As far as H. Pylori is concerned it makes no difference whether you have P.A. or an ulcer. I didn't have an ulcer either - so there's another piece of alleged 'science' up the spout. I had gallstones, which were singlehandedly responsible for my 'gastritis'. I had been misdiagnosed. This means that although I was full of H. Pylori, and although it took two lots of antibiotics to kill it all - and it may not have, hopefully, as I was never tested again - it had absolutely zero to do with my problem. So although H. Pylori was present, and may be present now, it was playing no part in my health problems. I was, in fact, walking proof that H. Pylori does not give you 'gastritis'.
With respect, all I'm saying is mistrust books that pronounce something is either a cure-all or a villain. There is plenty of research to counter the H. Pylori argument, and now you've met at least one person who actually physically disproves it!
I was unaware there were so many different types of gastritis. Mine was severe/chronic nodular gastritis.
Interesting thoughts around B12 and mental health. I believe this as played a part in my depression and anxiety. The medical profession should look at the studies and take heed. It annoys me that it is seen lower down the list as unimportant and that people are suffering unnecessarily.
I was recently retested for the H.Pylori and was negative. I haven't been retested for the Gastritis.
I suffer with an upset stomach and vomiting at times, unsure if it's related to the past medication, although it could possibly be. I have swelling of the tummy and abdominal discomfort and I am looking at asking my g.p for a referral to a gastro (seen last in 2009)
It certainly seems like views/evidence has changed in relation to how H.Pylori is perceived in some medical circles.
My partners father had H.Pylori for years and was on medication for this and ulcers. He had terrible trouble with his stomach and he felt the need to also take pepcid (unsure if this is said right?). So was the medication helping or making things worse.
After the triple therapy I didn't continue with the medication they advised because the thought of taking for the rest of my life filled me with dred (Omazrolpol).
Hi Crista, I assume they retested you for H. Pylori after the requisite amount of time? - because if they retest you too soon it will give a false negative. I assume you've also had an ultrasound to look for gallstones? Gallstones are incredibly common, especially in middle-aged women. You know the adage, 'fair, fat and forty'. I'm not fair, but when I got my gallstones I was overweight and in my forties, so it fits! If they haven't ultrasounded you, you definitely should request it. Unfortunately I didn't know about gallstones and wandered around for years in pain and knocked back copious amounts of Omeprazole, which is really, REALLY bad for your B12 levels, all to no avail because it was the wrong bloody treatment.
I often wonder that if I had been diagnosed earlier, by one simple test, if I would still have my gallbladder now. I'm fairly certain I would have changed my diet and I believe that might have made all the difference. As it was, by the time I had my first gallstone attack and landed up in hospital, my gallbladder was too damaged to reverse and ultimately I had to lose it. Always demand tests!
I take it you've also been tested for Coeliac Disease? That's an obvious culprit in bloating and vomiting.
I had the H.Pylori in 2008 and was re-tested this year after similar symptoms. The result was negative. I'm wondering about the 'Gastritis' though!
Negative for Coeliac Disease (mum as it).
Wondering about my gallbladder due to an achey pain in the area (I seem to be having bouts of different organs swelling at the moment).
I had an ultrasound checking my kidneys and bladder?
The first scanner said it showed mild hydronephrois in one kidney and a cyst on the other, but the consultant said he didn't trust the first scan and wanted another one doing. The second scanner said the kidneys looked Ok with no cyst seen, although she noted a swollen ovary?
I also have an achey pain in this area. I'm waiting for an appointment with a gynae which I had been asking for since the beginning of the year. Had fibroid's in the past, so maybe another one as appeared??
Yes, fibroids can certainly be a culprit in bloating. And I can't remember how reliable coeliac testing is; it certainly seems odd that your mother has it. I can't remember if that's an inheritable condition either. I don't suppose that you could simply be wheat intolerant? It's surprising just how irritating wheat can be, if you eat the wrong kind even. If I have an occasional McDonald's while out shopping, I can be constipated for days, just because of one processed white roll! And I bloat up like merry hell if I eat white flour twice in a row - no matter how posh and artisan it is!
But you should definitely ask for an ultrasound for gallstones if you have recurring burning pain in the breastbone that feels like something is boring a hole there, acid reflux, a recurrent cough, pale/grey floating stools (sorry!) or a lot of bloating and general malaise.
They found it via a camera procedure and then I was treated with triple therapy. These days there is an easier way to test. I was recently tested again and was negative.
I still have episodes of sickness and bring up what looks like thick tissue with blood clot like veins in it, (sorry). I'm waiting to ask my g.p if she will refer to a gastro then I can show them the pictures!!
Eek, I hope not! But no, that's unlikely (!) and your stomach doesn't really look like that inside. It sounds more like sputum with blood in it, perhaps from coughing a lot? If you HAVE been coughing a lot you should definitely suspect gallstones and get an ultrasound.
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