Anxiously awaiting diagnosis

[Fierybiscuits]

Hi all,

Firstly, apologies for the rambling post, but it really helps to write things down sometimes. I’m new and found my way here through the PAS webpage, as I was researching causes for low B12. I visited my GP in November as I was suffering with some digestive problems and was feeling very tired for no apparent reason. She immediately suggested I had IBS, but sent me for blood tests anyway, which came back saying I had low B12 (how low, I still don’t know). Apparently, the results of a previous blood test I had a year ago had also come back with low B12, but nobody bothered to tell me at the time. So, after a phone call with my GP, I was referred for the intrinsic factor blood test and booked myself in for the six B12 loading doses. I had these in mid-December, but I managed to come down with a bad cold in the second week, so it was very hard to tell if I felt any more energised. I haven’t felt much different in the weeks since.

It’s now been nearly two months since I had my IF test, my results still aren’t back, and I’m starting to get quite anxious to know what they say. I’m worrying because the GP/nurse told me if I had my injections I’d feel back to normal, which I don’t, and obviously I’ve since read so many people’s stories (which perhaps I shouldn’t), about tests coming back negative or people feeling that one dose every three months isn’t enough and they’re having to order from abroad to self-inject.

I don’t have a plethora of symptoms, just the tiredness and digestive issues mainly. I wake up feeling very tired, even when I’ve had plenty of sleep, and the exhaustion is sometimes so overwhelming I fall asleep at work (mightily embarrassing) or have to pull over on the drive home because my eyes are closing. This is at odds with a relatively active lifestyle, in which I feel fine running or snowboarding or renovating our house – I only notice the exhaustion when I’m not active. I can barely survive a car journey, a meeting or a movie without nodding off. I’m 32, so I’d like to think that’s not my age creeping up on me just yet.

Obviously, I still don’t know whether I have PA, but I don’t fall into any of the other categories for the main causes of low B12 (unless I have some undiagnosed digestive condition), and my mum tells me I had a great grandma who died of PA in the early 1960s, so I’m already feeling like it’s a foregone conclusion. I’ve suffered with anxiety for over 10 years (although this has greatly improved in the last couple), so I don’t know whether this might be another factor, but I’m probably getting ahead of myself and starting to think the worst of everything. Unfortunately fairly typical for me.

Can anyone offer any advice or reassurance?

[topazrat]

8 weeks seems a very long time to wait for an I.F. test result. Its usually more like 2 weeks. Maybe you should ask your G.P. to check that they haven't got lost. They usually have to be sent to a special lab by courier, so its not impossible for them to have got lost on route.

As for the symptoms going away after the loading doses, well there are many people (myself included) who really do wish that was the case.

A lot depends on how long you have been deficient and how much healing your body has to do. It is not unusual to not feel any real benefits for months.

I hope that you get your results soon and that you can start on the road to recovery and feel better equally soon.

[Fierybiscuits in reply to topazrat]

Hi there.

Thank you so much for your reply. I thought it was a long time too. I originally asked the receptionist every time I went in for an injection and eventually I think she got so fed up of me that she said "specialist" tests such as the IF can take up to 42 days (I thought this was an oddly specific amount of time) as they have to be sent away (to St. Mary's, I think?). I rang again yesterday and the receptionist I spoke to seemed baffled by the delay but didn't offer any solution or say they'd chase it up. In my typical fashion I didn't press the issue further and just said I'd ring back. Perhaps you're right and I need to ask to speak to the GP.

[topazrat in reply to Fierybiscuits]

I asked the receptionist, who said they weren't back. Went to see the G.P. for something totally different and asked him and hey presto, they were back - not sure why the receptionist couldn't see them though! Since then, I've requested to access my test results online so that I see them as soon as the Doc does.

[KimberinUS]

Please get checked for h pylori, it can cause stomach issues and is a root cause of b12 deficiency. I had it with nothing more than feeling full early and some nausea.

My b12 injections (i was originally tested at 169) improved me from having exshaution to fatigue. If you have h pylori you may have normal ferritin levels as you are eating iron and b12 rich foods such as meat. The body considers iron to be toxic in the event of chronic inflammation (h pylori) and segregates the vast majority of the iron you eat to ferritin. Your body only leaves you with enough iron to keep your hemoglobin levels steady. This will leave you tired.

My white blood cell count was never over range with H pylori. Your white blood cell count is not a good indicator of whether or not you have H pylori.

Best of luck and health.

[Fierybiscuits]

I rang the doctors again today, and the rather unhelpful receptionist still tried to tell me they take a very long time to come back. I asked her to chase them up, so when she bothered to look she then asked me if I’d had it done twice(?!). I said no, but that it was 8 weeks ago, and “miraculously” she found them. They’ve come back negative, so now I’m very confused. I’ve booked to see my GP again a week on Friday. Do I ask for a copy of my results? The H. Pylori test? I remember having had this done before, but it was a good 10 years ago. I don’t really know what to think now. People who’ve argued their corner before seem to have had far more grounds i.e. all or most of the symptoms of PA. I only have a couple of symptoms, but then I don’t know what else would cause the low B12 to persist for at least a year. I’m not vegetarian, and I don’t suffer with any of the other conditions generally associated with it. Maybe I can’t comment much further until I see my results, but a negative result has really thrown me