Don't know what to do next! - Pernicious Anaemi...

Pernicious Anaemia Society

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Don't know what to do next!


I'm hesitant to post again because I don't want to be a nuisance. On the other hand I'm feeling low, confused and don't know what my next move should be. Being on and reading posts on this forum makes me feel like I'm not alone. I have symptoms every day and it certainly drags you down. Brain fog is not helping me to make decisions either! Here are the questions I'm asking myself. Do I soldier on (painfully slowly) with GP and try to get a diagnosis or give up on this and self treat? If I decide to self treat do I treat with one supplement at a time? Do I supplement B12, Vitamin D, Ferritin and/or others? After two weeks with no improvement do I stop Omeprazole? Do I instead try a probiotic and something to raise stomach acid rather than lower it? Should I pay for further tests and if so which ones? I'm genuinely worried that if I don't do something I might end up with damage that can't be fixed. Apologies for ranting. I'm not expecting you good people to answer all my questions but just wanted to let off steam.

5 Replies
clivealiveForum Support

Hi pj16 how far along the road are you with your doctor?

What blood tests have been done so far?

What is your diet like? Can you eat plenty of meats/dairy produce?

What other (besides Omerprazole) are you on?

Hi clivealive and thanks for replying.

Not very far along road with GP. When I try to tell her all of my symptoms she seems to think that tackling them one at a time is the way to go. At that rate I'll be pushing daisies before I get any diagnosis! For 18 months (not long compared to some) I've been trying to get answers and the more I think about it I've probably had symptoms for longer. GP won't investigate B12 further as my last result was within range at 177ng/L. She seems to be concentrating on stomach issues first. I have had epigastric pain on and off for last few years and recently it is present every day. I am more worried about other main issue which is weakness/pain in legs and to a lesser extent arms. Also tingling in hands/feet and very odd stabbing/electric shock like pains in lower legs. I have other issues like hair falling out, chest pain etc. I feel like such a hypochondriac and am very lucky that my poor husband copes so well with me never feeling 100%.

I had recent bloods done at Medichecks which I posted here (yesterday I think). I think sometimes the more test results you get the more confusing it is! Since my recent Serum B12 was 177 I fully expected my Active B12 to be low and it isn't. It would seem that I am low (ish) in ferritin and vitamin D. I also wonder can someone have naturally low red and white blood cell counts but I digress!

My diet is very healthy. I eat on average 5 - 7 portions of veg and fruit per day, very little salt or sugar, all dairy products and meat/fish at least three times per week.

If anything I think the Omeprazole is making my stomach worse. Other medications I take are HRT, low dose aspirin, Ramipril, Pravastatin, Bisoprolol and Isosorbide mononitrate. The last five were prescribed by a cardiologist to treat moderate coronary artery disease which he found although he strongly felt that most of my symptoms did not match the level of disease. I also saw a vascular surgeon about leg pains but he was able to rule out peripheral artery disease. Although this is good news he had no idea what else could be causing the leg problems so suggested my GP test for Antinuclear Antibodies. I am still waiting for result of this which was done two weeks ago.

Apologies for the length of my post!

Sleepyfromwales in reply to pj16

Hi Pj16

I had epigastric pain for a few years and was told after an endoscopy to take omeprazole for 8wks then return for repeat endo, even my GP said omeprazole might not help me due to my already low stomach acid but they’ve actually worked for me, there was much improvement on second endo.

My pain, burning and tingling in legs and feet eventually started to improve also electric shocks, brain fog, loss of balance and chronic fatigue but it was nearly 2 years of monthly injections before started to feel better. I found taking Folic acid, vit d and a probiotic a great help.

I felt like a hypochondriac too but we all just have to keep trying to get help and answers any way we can.

I only got to have an endoscopy because of the continued severe chest pain, they discovered oesophagitis and gastritis so I’m finding more out as I go along.

Good luck with your GP I just kept plodding on with mine. Xx

pj16 in reply to Sleepyfromwales

Hi Sleepyfromwales. Thanks for posting. Glad your symptoms improved. Do you mean Omeprazole didn't help but you got B12 injections and they did? x

Sleepyfromwales in reply to pj16

Hi Pj16

No because omeprazole work by inhibiting acid production my GP thought as I have Autoimmune PA and gastritis I already have low stomach acid so it was possible they wouldn’t make much difference. The omeprazole were prescribed by the hospital to help heal my stomach and when they carried out a second endoscopy it seems the Omeprazole have really helped.

I was already on b12 injections for quite some time before I started the Omeprazole.

I didn’t feel they were helping but the photographs of my stomach proved they did. I had awful headaches when I first started taking omeprazole which also put me off taking them but now I’m so glad I took them. Xx

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