hi everybody im flatoutcooper - Pernicious Anaemi...

Pernicious Anaemia Society

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hi everybody im flatoutcooper

flatoutcooper profile image
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had a gastric bypass done when having emergency open surgery to repair a perferated ulcer.i was only 9 stone when they did the bypass and was struggling with alcholism.this was march 2011 and havent had a drink since.since my operation ive gradually lost ability to produce pancreatic enzymes and become type 1 diabetic.ive also been iron deficient for 18months and had endoscopy and scan showing nothing wrong.ive been feeling unwell and getting worse for 2years.my alchol keyworker who i see regular said her freind had a gastric bypass and had to have b12 shots every 3month for life,and ive not had one in 3and half years.ive got nearly every symptom of b12 deficiency but my doctor says im not

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Poppet11 profile image
Poppet11

Is this relevant to the type of surgery you had? ie, would your GP find it of interest?

laparoscopic.md/weight-loss...

Poppet11 profile image
Poppet11 in reply to Poppet11

This is a better one

jaoa.osteopathic.org/conten...

Secondchance profile image
Secondchance

Sorry to hear your difficulties. Have you been tested? Both alcohol and gastric surgery are recognised causes of B12 deficiency. Go back to your GP.

Leilanilea profile image
Leilanilea in reply to Secondchance

Also a thought...large percentage of peptic ulcers (sorry don't have stat at fingertips) are caused by infection with Helicobactor pylori.

digestive.niddk.nih.gov/ddi...

Helicobactor pylori, in turn, has been found to be present in significant number of those who are B12 deficient.

Pls See following reference excerpt:

Journal of Clinical Gastroenterology:

February 2003 - Volume 36 - Issue 2 - pp 130-133

Alimentary Tract: Clinical Research

An Association Between Helicobacter pylori Infection and Serum Vitamin B12 Levels in Healthy Adults

Shuval-Sudai, Ora M.D.; Granot, Esther M.D.

journals.lww.com/jcge/pages...

"Conclusions: The higher prevalence of H. pylori infection among subjects with serum vitamin B12 levels that are within the lower end of the normal range suggests a causal relationship between H. pylori infection and vitamin B12 levels in healthy adults."

When I was diagnosed with B12 def, my family practice physician ordered testing for H. pylori.

Leilani

Gambit62 profile image
Gambit62Administrator

I'm sorry to hear that your GP isn't listening.

Have you had serum B12 test done? and if so do you know exactly what the results were.

Unfortunately a lot of the symptoms of B12 deficiency are very similar to diabetes and once they have one explanation a lot of doctors don't see any point in double checking that there isn't something else going on.

Something else that your GP may not be aware of is that many drugs (eg metaformin) used to treat diabetes can actually inhibit the uptake of B12 - however you say you are type 1 diabetic so it's unlikely that you will be using the most common one - metaformin - as this is used to treat type 2 - so making a deficiency much more likely. The alcholism, as I'm sure you've already realised is also another high risk factor as B12 is stored in the liver so if liver is damaged reserves are going to be lower ... and you have the gastric surgery - which again means that it is more likely that you may not be absorbing properly.

General opinion is that you ought to confirm the diagnosis of B12 deficiency before you supplement but if your GP won't investigate - and you can't talk to another one who is more receptive - then you could try self supplementing to see if that has any effects. Inter-muscular injection isn't the only way of getting B12 into your system when you aren't able to absorb it through your gut. There are sublingual tablets (saliva) and nasal sprays. If you do decide to supplement try looking at a methylcobalamin supplement as this is closer to the active form of B12 that your body uses and people who are exhibiting neurological symptoms often respond better.

You need to take very high doses - somewhere between 1mg and 5mg a day ... but that shouldn't be a problem. B12 isn't toxic (though a few people do have allergic reactions to injections) and the treatment for cyanide poisoning is 5g over 15 minutes - 1000x the amount you would be taking if you used 5mg sublingual tablets.

Any time you feel you need to vent about the GP not listening - please do - its a problem so many of us have ... and one reason why so many of us end up managing the condition for ourselves.

Poppet11 profile image
Poppet11 in reply to Gambit62

If he's had a gastric bypass he can't absorb b12 (and other things) - no matter what the test says.

Gambit62 profile image
Gambit62Administrator in reply to Gambit62

B12 is absorbed from food in the ileum - part of the small intestine. If the gastric bypass surgery involved cutting out your ileum then that will have left you unable to absorb B12 from your diet and you will need to find non-oral ways of getting B12. This should be mentioned to patients post-surgery but it appears that it is often overlooked. Even if the ileum hasn't been removed your body still needs time to predigest food before it gets to the ileum so your ability to absorb could be compromised.

It would definitely be a good idea to explore with your doctor what exactly was involved in your gastric by-pass and use that as an argument for being put on maintenance shots at the very least.

this is an extract from the NICE guidelines on B12 and folate deficiencies

*Pernicious anaemia (an autoimmune disorder which results in reduced production of intrinsic factor) is the most common cause of vitamin B12 deficiency in the UK. Other causes of vitamin B12 deficiency are rare, but include:

Gastric causes (e.g. gastrectomy, gastric resection).

Inadequate dietary intake of vitamin B12 (e.g. vegan diet).

Intestinal causes (e.g. malabsorption, ileal resection, Crohn's disease).

Drugs (e.g. colchicine, neomycin, metformin, anticonvulsants).

B12 deficiency is a serious condition. Left untreated it will result in multiple system failures - neuropathy, dementia, blindness and death. The mention of anaemia in pernicious anaemia is a little misleading. Anaemia isn't always present and isn't the cause of the other symptoms that develop it is itself a symptom of B12 deficiency and often isn't the first symptom to materialise.

Leilanilea profile image
Leilanilea in reply to Gambit62

Nicely done and important!

Poppet11 profile image
Poppet11

Gambit - I love that last paragraph!

Leilanilea profile image
Leilanilea

Flatoutcooper,

I believe there is strong chance you are B12 deficient and need injections...good info here from other members. Also want to congratulate you on your sobriety and encourage you to hang in. Been there/done that!

Leilani

flatoutcooper profile image
flatoutcooper

Hello its flatoutcooper again.I've been meaning to post the results from a July blood test,after being told in April b12 was OK and it was type 1 diabetes that i was I'll with.as I tried to explains that my 14yrs old son was having to help dress me,and said being a self taught auto electrician a new ad got problems.I've had to work out what to say ,which with anxiety/fog/poor memory& problems concentrating became a struggle............hba1c level -ifcc standerdised 74.0 mmol/mol***serum ferritin 12ng/ml***Urea and Electrolytes(sjbb1662)*abnormal***serum sodium135mmol/L***serum potassium 4.9mmol/L***serum creatinine51umol/L***serum urea level3.5mmol/L***serum glucose level17.8mmol/L***platelet count232-10*9/L***RBC5.04-10*12/L***haemoglobin estimation134g/L***haematocrit0.410***mcv81.3f/L***mch26.6pg***mchc327g/L***serum b12-619ng/L***serum folate9.1ng/ml***serum iron level7umol/L***transferring saturation index8%...june12..2014

Hi,

Its very difficult to say anything about blood test results with out the ref ranges used for normal by the lab who did the tests. From the above it looks like you are iron def still, that is all I can say, sorry for your hard work!

Kind regards,

Marre.

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