I’ve had anaemia for years and all of the symptoms and more for B12 deficiency/PA .
Finally given loading doses a year ago, followed by 4 further shots, three months apart next one, due 25 July.
Blood sugar always runs around 50 so well under control, but recently due to a car accident I have been unable to cater for myself and have had to rely on others for my meals which has meant my latest blood sugar has increased to 60.
Just returned home from my diabetic review. I informed the nurse how weak and fatigued I feel very unsteady on my feet. Can’t read or watch the television because of my eyes, people are saying, I don’t seem to understand them and I don’t understand things myself, she asked me when my next B12 was due and I told her that the week before I had asked my GP for my next injection to be prescribed and he said things are okay at present. Let’s take a rest and see what happens!
I have been on PPIs and Metformin for years, over 20, and she said to me well let’s increase the Metformin to control your blood better !
So where to from here, I am at a total loss. I have written a letter to the practice as recommended on here, which was largely ignored.
Unfortunately, as I live on the Isle of Wight, I have very little scope for finding another GP practice as I live in the country.
I have had occasions in the past.I have had to complain to the surgery through their complaints procedure and each time I get told we will respond within 28 days and that’s the end of it nothing ever heard again.Apart from once, when the Head GP gave me a right telling off, which was just after Covid, so you can imagine what I was told.
I also have TMJ, for which I’ve been waiting over a year for an appointment with Max face neuropathy in my legs and feet again put down to diabetes, but I know it is different and has been offered nothing for the pain and discomfort last week my GP injected my wrist for carpal tunnel and injected straight into the nerve, and now I can feel even less.
After paying privately to see a gastroenterologist, he has suggested that I most probably have Crohn’s disease with a malabsorption problem, but again no treatment offered
77 today and feeling like I don’t want to reach 78
Written by
Nonameme
To view profiles and participate in discussions please or .
I really feel for you, is there another dr at the practice you can see? I know how terrible you feel, I felt like I was literally dying. I saw a private dr in the end and under his care I now treat myself. Please try writing to the practice manager asking for the correct treatment for your condition
Nonameme, I'm so sorry, you're really stuck in a difficult situation. Sending you lots of virtual hugs.
Regarding B12, I assume you've seen these templates to write to your doctor. b12deficiency.info/writing-... Your B12 is not even that high, so I don't know why they're denying you your B12. Sounds a bit sadistic to be honest.
So failing that, you can always self-inject at home using injectable B12 sourced from reputable online Germany pharmacies - like so many of us here do, myself included. It is easier than it sounds, and even the needle-phobic manage to reclaim their lives like this. Do you think your carers would be willing to help with injections if necessary? If you would like to go this route, just let us know and we can help.
Folate is also quite low so you might consider starting on a low amount e.g. 400 to 800 mcg and then increase if you decide to self-inject. Taking folate without taking B12 can sometimes do more harm than good.
Have they tested ferritin/iron and vitamin D?
Do you have thyroid issues and/or has thyroid been tested recently? Sometimes TMJ and carpal tunnel are hypothyroid symptoms.
For blood sugar control through diet and home blood glucose (BG) measurement, I like the bloodsugar101.com/ website. It teaches you how to measure before/after meals to find the foods that spike your BG the most and then you reduce/avoid them as appropriate. For example I am fine with 2 potatoes at dinner, but 4 and my BG will start spiking (even with metformin). I take 2 x 850mg metformin, if that helps.
Have you tried going gluten free for digestive issues?
If you have low stomach acid, and trouble digesting food, you can try lime juice or apple cider vinegar.
I am not medically trained, just a fellow B12D sufferer.
Sounds lika a bad combination to increase metformin and cancel the b12 injection, as metformin interferes with b12 absorption! Especially if you also have Crohn's, which often affects the area where b12 is absorbed. It would be better, IMHO, if you could have the b12 injection to see if it makes you feel any better.
Apparently a calcium supplement can lessen the negative effect of metformin on b12 absorption, but I dont know how much is needed. You could also try a b12 spray or sublingual to see if that helps.
The newly published draft NICE guidelines on diagnosis and treatment of B12 deficiency are worth reading , and should help you to argue your case with your GP. Trouble is when you feel so very unwell , arguing is just too difficult.
Your GP should read them .
You are in desperate need of B12 injections . Would you consider self injecting ? If so just ask us and you will get the information that you need .
Could you speak to a pharmacist? - I'm sure I've seen a statement that metformin isn't recommended for use in patients over 70. Pharmacists are often in a better position to be aware of drug interactions and recommend alternatives than GPs looking at conditions in isolation.
Given your age you are likely to have B12 absorption problems anyway due to low stomach acidity - and the PPIs may be masking this.
Unfortunately the focus of your diabetic nurse is going to be on diabetes and she is probably unaware of B12 deficiency. The overlap of symptoms really doesn't help.
Did your GP say why they thought your B12 was okay? If they are going by current test results then we all know how misleading using those results is.
You could try pointing your GP and the nurse at the area of the PAS website that is aimed at helping medical professionals improve the diagnosis and treatment of PA (and other B12 absorption problems)
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Diabetes medication Metformin and its affect on B12 levels
Metformin and B12 Levels
Metformin alternatives
B12 injections frequency
