I've recently been diagnosed as having B12 deficiency. My level is 144. My red blood cells have become larger too. I've had symptoms for over two years. In that time I've been prescribed citalapram, zopiclone and diazepam for varying symptoms. The fatigued is unlike anything I have ever experienced and lost my small business over it. I returned to full time work six months ago. The symptoms got worse. I would come home and cry because I was too tired to function. I'd had tingling in my fingers and hand but I thought this was just tiredness. Then I started getting excruciating stomach pains. My tummy would bloat so much that I looked pregnant. I went to my GP as I tried over the counter remedies first, to no avail. I did not mention to the GP about the tingling and fatigue as I thought this was just getting older/mum to two/working full time. He prescribed omeprazole and ordered bloods to be taken the following day.
While waiting for the blood results, I took the omeprazole and they worked extremely well. However my bloods came back with b12 deficiency.
The information about what I was to do next was terribly sketchy. I was told six injections then 21 and even the doctor was consulting a BNF as she wasn't sure of the right treatment. Eventually, I was told, six loading doses and one every 12 weeks. And was sent on my merry way. I had no idea about B12 and it's effects on the body......until I came across a lot of info on google. After the 4th dose I had a terrible reaction of fainting and vomiting so I had to wait two weeks before I had my 5th injection.
In the meantime my stomach really started to hurt again, despite taking omeprazole, my hand started tingling and I couldn't get my words out or they would come out but messed up. The doctor doubled my dose of omeprazole and ordered Intrinsic Factor antibody blood test which has come back negative. The nurse said, after having to consult google, that I definitely do not have PA.
I truly do not understand why I don't absorb B12. I'm not vegan or vegetarian. When I asked the nurse why I can't absorb it, she replied "some people can't ". Logic tells me that there is always a reason behind something but I'm not getting any answers.
I've lost a lot of things in my life and had to make some changes with work. I really don't want to lose anything more. I hope someone can help me.
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Marissa01
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The anti-IF test is only positive in 50% of people with pernicious anaemia, so you could easily have PA.
It's highly likely that you have PA caused by gastric atrophy. The gastric atrophy means that your stomach doesn't produce enough Intrinsic Factor, which means that you can't absorb B12 properly.
The other result of gastric atrophy is low, or no, stomach acid (hypochondria or achlorhydria). The symptoms of this are remarkably similar to too much stomach acid, which is why you've been prescribed Omeprazole, a PPI (proton pump inhibitor), that lowers stomach acid - which is only exacerbating the problem.
You can test yourself by dissolving a half-teaspoon of baking soda in a glass of water. Drink this first thing in the morning, before eating anything. In normal people the baking soda reacts wi the stomach acid to produce carbon dioxide. This CO2 is released as burps. If you don't start burping quite a bit (just a little bit can be from swallowed air) the it's likely that you have achlorhydria
Search this forum for achlorhydria and you'll find lots of advice on how to sort it.
Your doctor (and nurse) obviously need information on B12. I've put together a summary document with downloadable links to official sources of info. You can get it here... frankhollis.com/temp/Summar...
I would like to thanks you wholeheartedly for your reply. I am at the end of my rope and cannot remember a day when I felt well. I am going to book an appointment with another doctor and mention the achlorhydria. I looked at the symptoms and, my goodness, it rings a lot if bells.
I will also be trying the baking soda on Friday! Can't say I'm looking forward to it
Sorry that things have been so bad - not surprising that you are confused and the problem isn't you it is the poor medical advise that you have been given.
Go with the advise that fbirder gives below - stop taking the omeprazole as it sounds as if you probably have low stomach acidity rather than high stomach acidity. Make sure that GP is aware that you have neurological symptoms. The regime in this case is loading shots until symptoms stop improving followed by maintenance every other month - though even this can be far from sufficient - sure that is in the link supplied.
Were your potassium levels being monitored whilst you were being given loading shots? - given that you have anaemia they should have been as you are at risk of developping a potassium deficiency in the early stages of B12 treatment. The symptoms you describe at the 4th shot sound very similar
I am at the end of my rope right now. I can't seem to get any further forth with he GP. I will book another appointment with a different doc and talk to her about what has been mentioned her by you lovely people.
I've been prescribed folic acid too so I guess i will keep taking that. My tummy hurts so badly I need the doc to take me seriously.
I've looked into a private haematologist at my private hospital. Going to email as I feel so unwell and totally at a loss.
Many thanks for your reply. I'm so very grateful x
I would put money on it that you have P.A. Other members have told you that often the antibodies don't always show up. You need to start injecting B12 loading doses ASAP. Also as you are showing neurological symptoms you will need injections every other day until improvements show. As for this tummy. Problems There are due to low or no stomach acid, which allows bad bacteria to flourish, giving off the gas that bloats you, and gives you stomach pain. As fbirder says stop the OMEPRAZOLE immediately . It's the worst thing you could take.Doctors prescribe it all the time, and it is evil stuff unless you really do suffer from too much acid, which is a rarity. The NHS don't seem to want to test stomach acid for some reason. But I found a gastroenterologist who told me that PA patients all have low stomach acid (Hypochlorhydria) or no stomach acid(Achlorhydria) But he said the was no treatment There is!Some people try Betaine Hydrochloric acid with Pepsin when they eat protein(Google it) obtainable at Amazon. I used a marvellous water based probiotic called Symprove . It has helped me beyond belief. Also organic raw unpasteurised Sauerkraut is very good, and you can make your own. The fermentation process makes wonderful probiotics which are so good for your stomach.
THe PAS only exists because the Medical Profession has no understanding of P.A. It is a coincidence I'm sure that P.A can be controlled with natural products ,which cannot be patented so cannot make big bucks for the pharmaceutical Industry, with whom exists an unaturally close relationship. I must not say more. Best wishes to you.
Thank you for the reply. You have all been great. I am currently on the loading dose and my last one is on Friday.
It's also great to know that all PA suffers have low stomach acid, this explains an awful lot. I am going on to amazon to order the symprove, at the mo I will try anything. My husband is german so he will approve of the sauerkraut and he's great at making it.
It's all a bit of a mine field with searching and obtaining information from the medical profession, who I am meant to put my faith in. I have serious doubts. I spoke to the chairman of the PA society today and he asked straight away, why do I have b12 deficiency? A very good question that I was unable to answer. He also told me that if I was negative to IF then I have anti intrinsic factor pernicious anaemia.
Lots of info swimming around my head. I do however appreciate everyone's help. It's such a reassurance. X
You should definitely be having injections every other day until symptoms stop improving and then every two months. It says this in the British committee on standards in haematology guidelines that your gpshould have read. You can show him/her this in the following bcshguidelines.com
This is the regime you need because you are clearly having neurological symptoms. It's in the British national formulary as well. Good luck
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As has been said already...for someone with b12 deficiency with neuro symptoms UK recommended treatment is loading doses every 2 days as long as improvement continues then injections every 2 months. See Management section in link below., info is based on BNF (British national formulary) Chapter 9 section 1.2
Info on treatment can also be found in BCSH Cobalamin and folate Guidelines.
Are you UK based?
UK B12 documents/articles
bmj.com/content/349/bmj.g5226
Google "BCSH Cobalamin and Folate Guidelines"
ukneqas-haematinics.org.uk/...
These make it clear that a person who is symptomatic for B12 deficiency should be treated even if B12 levels are normal range to prevent neurological damage. Untreated or undertreated B12 deficiency can result in permanent neurological damage so adequate treatment is worth fighting for in my opinion.
UK B12 websites
b12d.org
b12deficiency.info/
martynhooper.com/
B12 books
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper
Could it be B12?: An Epidemic of Misdiagnoses by Sally pacholok and JJ. Stuart
B12 symptoms lists
b12deficiency.info/signs-an...
b12deficiency.info/what-to-...
pernicious-anaemia-society.... See Symptoms Checklist. I ticked all my symptoms and gave a copy to GPs along with Martyn Hooper's latest book and a copy of the BCSH Cobalamin Guidelines
Other useful links
patient.info/doctor/macrocy...
b12deficiency.info/b12-test...
patient.info/doctor/full-bl...
b12deficiency.info/b12-writ...
I learnt from experience to make sure I got copies of all my blood tests as what I was told was normal was not always normal on the copies. I look particularly at b12, ferritin, folate and the full blood count.
Thanks to all who have given me all this information. I had an appointment with a GP today who has changed my omeprazole to Mebrevin. She has also referred me to a gastroenterologist.....not sure if this is who I need to see, I thought I would need to see a haematologist.
I've emailed a private haematologist and asked for an appointment, outlining my symptoms and asking if I need to see him or gastro.
I'm in so much pain with my tummy that I can't wait much longer to be seen.
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