Hidden in reply to crista18 years ago

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.

crista1 in reply to Hidden8 years ago

Could I ask how I would go about finding a good hematologist who's clued up on Vit B12 def and PA etc?

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Hidden in reply to crista18 years ago

I just rung private hospital I knew locally, and found a haematologist, she was kind and very helpful, pure luck perhaps.

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crista1 in reply to Hidden8 years ago

Thank you. I'll try a couple near me x

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Hidden in reply to crista18 years ago

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".

AND DON'T GIVE UP - I HAVEN'T.

GOOD LUCK!

crista1 in reply to Hidden8 years ago

Hi Haynes.

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.

I'll look at the book you mentioned.

Keep well.

X

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Chancery in reply to Hidden8 years ago

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.

Hidden in reply to Chancery8 years ago

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.

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Chancery in reply to Hidden8 years ago

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!

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crista1 in reply to Hidden8 years ago

Hi Haynes,

I'm definitely buying the book.

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.

Hidden in reply to crista18 years ago

This may also be of interest, see:

Chronic Gastritis

emedicine.medscape.com/arti...

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Chancery in reply to crista18 years ago

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.

crista1 in reply to Chancery8 years ago

Hi Chancery.

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??

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Chancery in reply to crista18 years ago

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.

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crista1 in reply to Chancery8 years ago

I've been vomiting on and off for a while now and this is a fairly new occurrence (since Aug). So when I see my g.p next week I shall show her.

crista1 in reply to Chancery8 years ago

I actually thought it could of been part of my stomach lining!

Chancery in reply to crista18 years ago

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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