I had a positive result for the intrinsic factor test and my GP wants me to go back and get B12 and Iron Folate levels checked.
I will refuse a b12 test as they know from before that it was low and I'm self treating with injections at the moment.
Ive read in the PAS notes that taking suppliments near an IF test can affect the result - I definitely had an injection a day or two before the test. Could that impact it?
Im not sure that what the next steps are apart from the iron folate test - Im happy to self inject as it works most of the time apart from occasional flare ups - i notice bad bowel movements first, then within a week of these I have the fatigue, brain fog and pins and needles. The gastro symptoms may occur over a week and neuro over a few days.
I am currently on a list to see a haematologist and have seen a terrible gastroenterologist and have asked to see a different gastro.
Any advice for what to say to my gp and what next steps shiuld be would be appreciated.
Thanks
Written by
Luac
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Lots of B12 info in my replies on the the thread below eg symptoms of B12 deficiency, causes of B12 deficiency, more B12 books, more B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.
Thanks for the detailed response, I am a member and I have left a message on the answer machine with the PAS. I have been reading and posting here in detail about my ups and downs over the past year/s.
The main issue with the gastro was not sharing results of a variety of tests that were taken. I have had CT, MRI, Colonoscopy and Endoscopy etc I have low fecal elastase (which I think is connected to the PA and low stomach acid but the gastroenterologist thinks is Chronic Pancreatitis even though I have no pain, weight loss and CT shows pancreas to be healthy). I am currently taking creon with my food, but it had made next to no difference at all. In fact, I ran out of creon last week and really do not notice any change without it.
The endoscopy last November showed gastritis and oesphagitis and a hiatus hernia. I was given three months omeprazole by the surgeon and no follow up. The gastroenterologist has not spoken to me about that at all, or asked me about it. I asked him twice if I was tested for H. Pylori and he didn't know what I was talking about!
I had one of the test for coeliac with the GP, but not both tests.
"I asked him twice if I was tested for H. Pylori and he didn't know what I was talking about!
I had one of the test for coeliac with the GP, but not both tests."
Perhaps it might be worth writing to him and GP and politely asking to be tested for H Pylori and for both coeliac tests to be done. Maybe refer them to info in NICE guidelines on Coeliac disease and H Pylori .
I would expect him to have done the following
TTG IgA test for antibodies to gluten
Total IgA to check if you have IgA deficiency.
If you do have IgA deficiency you will need different tests for coeliac disease as coeliacs with IgA deficiency will get a negative result on TTG IgA test.
You should be able to access any notes and reports the gastro wrote after the endoscopy/appointments and copies of letters that were sent by hospital to GP.
I will push both the h. Pylori and coeliac tests. I just requested my notes today and also got all notes he had sent to my gp.
Reading them confirms my thoughts that he was quite incompetent.
One of the letters says:
"This pleasant man had telephone consultation today due to Covid-19. Since he started the Creon capsules he is feeling much better. His weight is stable."
I was not feeling better, there was little change to my stool since starting Creon and I had been gaining weight! (Banana bread etc!!!)
I have now been referred again to a different hospital/gastro team and I've also been referred to a hematologist.
It would be good to get injections at your surgery too. You could ask for a prescription to inject at home. It's on your medical notes then. Up to you.
I do that and have extra I buy .
High b12 in your blood .
Its possible to have a false positive . Newer tests shouldnr be affected if you've had b12 injection though.
They should really do that blood test before Injections start.
So as the most common cause for b12 deficiency hang on to that result.
Get a print of it. A diagnosis of PA should ensure better treatment (I know not always) but at least b12 Injections for life stated even if not supplied at the right frequency.
So many have been told verbally as most likely causes and put on injections for life. Then years later retract it .
some dont even get a test as only picks up 50% of thises with PA . And treatment should be the same whatever. If it's an absorbtion problem and not dietary.
I personally find a test thats not conclusive one way or the other as frustrating as the lack of knowledge of this condition and the condition itself.
However if you test positive you have a diagnosis of PA (95% correctl) . on your medical notes for sure.
I've only gained this knowledge from reading on here and reading medical information. So this is my understanding.
P.s my local lab. Only do folate with the b12 si donr be surprised if b12 is done with folate. Tha5 happened to me.
Good practice at the start but not needed when you just want folate level checked.
Thanks! I will not query the result! I am worried about getting another B12 test as I expect it to show high levels of B12. Of course we know that that doesn't mean that the B12 is active or not. I am worried that I will be told to stop supplementing or that the levels are 'dangerously high' even though the NHS clearly says that there is no known effects of toxicity or overdose.
Does your doc know you’re self injecting? If not, it might be a good idea to tell them. Otherwise they may withhold treatment if you refuse a B12 test, or if they do test and your levels are sky high.
Very high levels of B12 can produce a false positive for older methods of doing the IFAB test. The latest one (which is 13 years old) supposedly has no problems in that area accessdata.fda.gov/cdrh_doc...
They are aware that I am self treating. I am worried that they will get a high result and tell me to stop treating, but when I last told them that I was still injecting every two days (I have just switched to twice a week) they said that I shouldn't have to do that so they have referred me to a hematologist. I found that positive as they didn't query my need for the injection and understood that I was treating according to symptoms and need.
Told my GP that I was self injecting the day after I started. I trusted her, but thought she may try to talk me out of it. By then, I felt I had little choice if I wanted to ever get back to work, where my job was being held open for me.
Because I had stayed with the same GP throughout, she knew what I had been like at my worst, she had sent me for all the tests and to all the relevant consultants, and so also knew when I had improved. Although I hadn't improved sufficiently on any regime to be entirely symptom-free yet, frequent injections seemed to work better, less frequent less so.
So when a haematologist told my GP not to give me more than 1 injection every 2 months, I knew it was time to get myself well.
My B12 was tested at the start of 2016 : 196 ng/L (range started at 197, luckily)
Then was tested again 4 months later: >2000 ng/L - straight after injection
Two months after that : 860 ng/L - two months after that last injection
Two months after that: >2000 ng/L - six weeks after the next one
After that, my GP said she wasn't going to test my B12 any more as it was pointless.
She tested my B12 again last month - guess what ? Still >2000 ng/L, as I'm still injecting frequently.
The other blood test results were the best they've been in 5 years.
I think we've done well.
There seem to be positive signs that your GP would be supportive. No, we should not have to self inject B12 every other day - but if I hadn't done that, I would not have seen these improvements and got back to work. In fact, at the haematologist's recommended regime, I would have deteriorated.
Without the support of those here, and my GP, it would have been impossible to get well enough to go back to work. I worked, on a phased return, for two more years -then took voluntary redundancy during the first lockdown. It makes a difference when it's your decision.
There is no way of telling how your GP will react. I think it depends on how observant s/he has been -and whether they are willing to take more notice of what they see over what the blood results might indicate to them.
I had a phone consultation today and he agreed it would be pointless to retest for B12 - I have a PA diagnosis and that says it all! We will retest the iron levels.
I have gastro/malabsorption issues as well as neurological ones, he wants me to have a fecal calprotectin test and mentioned IBS.
I really dont want to throw IBS in to the mix as well 😔 - possible chronic pancreatitis, PA, EPI and IBS... seems like these illnesses cross over each other...
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