nowhere to turn

[flatoutcooper]

i'm sat here on my own after being runaround so much that ive gave in.still no b12 shots of even perscribed a single vitamin.a cant even concentrate long enough to do anything,and have nobody left to care.av turned into a jibbering idiot,unable to figure out what else to do.why bother asking me how i was,just to make it all pointless.

[jillc39]

oh do hang in there and tell us more about yourself. there are many people here to listen to you.

[wedgewood]

Please give is more information so we can help you. Do you need B12 injections ? I can send you some if you private message me with your address .

[Lisahelen]

I see you have had gastric surgery from previous postings.

Can any member give relevant info regarding b12 after surgery for this person to possibly take to gp.

[Hillwoman]

With a gastric bypass and chronic pancreatitis, it's no wonder you are B12 deficient and feeling terrible. Your doctor(s) should know very well that you will be unable to absorb B12 from your food after gastric bypass alone, but pancreatic enzymes also play a part in complete B12 absorption - a double whammy. Have you been prescribed Creon or Pancrex to replace the pancreatic enzymes?

Please telephone the Pernicious Anaemia Society, because it sounds very much as if you need someone to act as an advocate for you. Please hang in there. You've had a very kind offer from wedgewood to help you directly with treatment. If you need further practical assistance, I am also very willing to help out.

[Sleepybunny]

When you had surgery did you have nitrous oxide?

See link below for info.

gov.uk/drug-safety-update/n...

b12deficiency.info/what-are...

I found it helpful to give my GP a copy of Martyn Hooper's latest book

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which is up to date with current UK guidelines and covers other causes of B12 deficiency besides PA.

PAS (Pernicious Anaemia Society)

I'd echo Hillwoman in saying that the PAS might be helpful to talk to. They can sometimes intervene on behalf of members by writing letters and I'm sure can suggest helpful info for you to look at.

pernicious-anaemia-society....

PAS tel no 01656 769 717

B12 Deficiency Info

b12deficiency.info/

This link gives help with writing letters if unhappy with treatment. The person who runs the website can be contacted if you click on the "contact us" tab.

b12deficiency.info/b12-writ...

B12d.org

This group may also be able to help. it can take a while to get a response.

b12d.org/contact

[Hidden]

Poor you. We have all been in your position. Have you demanded blood screen? Try & read Martyn Hooper book. He often points people in the correct direction. His book is very useful. Hopefulky he will advise after reading your plea? Gather yourself together, pluck up your courage. Get back to GP. Cry, beg, read out the list of symptoms you have. Tired, cant function, unable to judge distances whilst driving. Cant remember how to do simple tasks??

Sorry, I can't be more helpful.

[clivealive Forum Support]

This has been going on for far too long flatoutcooper . Do you not have a friend or relative that could "read up" some of the information that Sleepybunny has posted here and go with you to your doctor for support.

Are you still in touch with your alcohol co-worker from a couple of years back? Maybe she could help as she knew someone in your situation,

On page 56 of “Could it be B12?” (Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O.) a case is recorded part of which reads “… He (the doctor)wasn’t surprised: The woman’s history included a gastrectomy twelve years earlier that inevitably results in severe B12 deficiency if patients don’t receive compensatory B12 injections”.

Your doctor should know this and he's wrong not to treat you with B12 injections. You will also need you folate level checked.

[ndodge]

I can't believe you are not getting treated for B12 deficiency since you have had gastric surgery.

Clivealive's idea to get a friend or family member to help you is a very good one.

Hillwoman was spot on telling you to call the Pernicious Anemia society for help.

There are wonderful people in this forum who can give you lots if information and support. Please keep us informed!

My heart goes out to you and I sincerely hope you get the help you need soon.

[Kittycaite]

I'm new to this forum so can't offer you practical advice . I know that feeling of sheer exhaustion and exacerbation as I've been on a merry go round with medical conditions for years too.

I'm sending you healing and love for positive solutions , support and immediate treatment ☆☆☆.

[Sleepybunny]

Sometimes MPs can help people to get answers.

parliament.uk/mps-lords-and...

I'm sure most MPs 'websites will have a contact number and a list of dates for when they have advice surgeries.

[flatoutcooper]

Im ok&so Sorry to leave it so long,and thank you all for being so caring.feeling really poorly lately,struggling with writing down what I'm thinking without loosing concentration.

[flatoutcooper]

Am sorry to all you kind people who responded to my post,as i did'nt reply after.really struggling running fight or flight responce,as my body enduring so much trauma no being able to cope with 95% of missing stomach.a cant just lay down and die,same as if we were drowning and not move.

[Polaris]

Excellent advice by others above.

You could also start by emailing this latest BMJ research document (see bottom of page 1 as well as page 2 - Box 1) to your GP as your health is being seriously endangering by failure to diagnose and treat with B12 injections after stomach surgery:

cmim.org/pdf2014/funcion.ph...

"What is the pathophysiology of vitamin B12 deficiency?

Intrinsic factor is a protein, produced by the parietal cells of the cardiac and fundic mucosa of the stomach. It binds vitamin B12 to allow its absorption through the gastrointestinal tract, by way of a receptor on the intrinsic factor that is specific to cells at the terminal ileum. If there is resection or disease of the gastric mucosa or terminal ileum this leads to vitamin B12 deficiency as a result of malabsorption. "

"Summary points

Vitamin B12 deficiency is a common but serious condition

Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment

There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance

There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency

If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features"

There are also BCSH and BNF guidelines that should be followed for neurological symptoms:

"The BNF advises that patients presenting with neurological symptoms should receive 1000 g i.m. on alternative days until there is no further improvement. "

I hope things start to improve for you soon flatoutcooper. Please don't give up.