B12 deficiency / pernicious anemia

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Hi all,
I've been diagnosed with B12 deficiency - levels 127. My GP said the tests are quite unreliable so it's likely to be less.

I've a 2 week course of B12 injections (every other day) and booked to check my intrinsic? values for pernicious anemia.

The last month or so I've thought I'm either going completely mad (history of depression) or I'm dying. Dramatic I know.

I'm quite relieved I have a diagnosis of something. But I'm slightly dubious that this is causing all my problems? Has anyone experienced this? How did you feel after the injections?

Hello! I've had the same thing, now in 12 weekly injections for life apparently. I can't say the injections are life changing or that I really noticed any symptoms. My levels were picked up during a pregnancy blood test.

That said I do feel a drop in energy levels once my jab is due.

Oh that doesn't make me feel good!!

I've been so exhausted just walking to another room makes me nauseous. And the knock on is depression and just no energy for anything. I'm finding it hard to belive its solely down to B12 deficiency.

Low b12 can make you feel seriously wiped out and quite ill, you'll soon know once you get your injections. Celiac disease can affect how b12 is absorbed.

My mother had this, although it wasn't diagnosed until after there's already been some nerve damage. She had injections for the rest of her life and as she got older it was very noticeable when her levels dropped.

Hopefully you'll start to feel the benefits.

I was diagnosed with pernicious anaemia about 2 years ago and underwent injections and then pills.

It was life changing. I can now stay up beyond 6 pm. :) I need to have updating blood tests every 6 months and I am on very high dose B12 pills (now just twice a week) but my life has changed.

Stick with the programme. Pernicious anaemia used to be fatal until they figured out how to treat it in the 70s I think(?) but my experience is that it is quite easily dealth with and liveable with as long as it is monitored.

best of luck.

Have a look at the pernicious anemia society website - loads of useful information.

Yep, it's called pernicious for a reason. Feels like a slow death if not treated

Yes, I had this and had injections, or was amazing - made me realise how shite I felt once I was feeling better.

I was breathless, everything was so hard, like wading through treacle, and I couldn't think straight. The injections made a very quick and noticeable difference.

I had a similar experience. Felt absolutely dreadful. I was just dragging myself around in a foggy haze most of the time. Felt dizzy and faint and had pins and needle sensations in my face, feet and hands. I was late 40s and thought it might have been the menopause. My level was 119. I didn't see an immediate improvement with the loading doses despite reading that lots of people do. It was more of a gradual improvement. I would say it took me about a year to get back to 'normal' energy levels. I asked for more frequent injections as the 12 week frequency didn't seem to be cutting it for me. The GP very reluctantly agreed to every 8 weeks and that's the regime I've been on for a couple of years. I also keep my folate levels up with folic acid supplements as apparently it's critical in the making of B12 in the body. I tested negative for pernicious anaemia and coeliac disease. I eat meat and B12 rich foods so I know it wasn't diet related.

It all started a year of so after I had my gall-bladder removed. For some reason I am no longer able to absorb B12 through the stomach/intestines. I had a B12 test about a year before I had my gallbladder out as part of a full set of bloods and my level was in the 300s so I know I used to be able to absorb it OK.

Hope the injections work for you and you start to feel better soon.

Entirely depends how long it's been going on for - which at 127, I'd guess a while.

Do you have neurological involvement? I do and the most improvement I've experienced was in the neurological symptoms. I do feel immensely energetic after the jabs, which I've been having for a few years - it maybe lasts about 4 weeks, if I'm lucky, though.

I have B12 deficiency, mine was less than 50 & I've still got numb legs & feet even self injecting every other day. My GP will only prescribe me one injection a month, so I buy my own from Germany. Make sure you are taking at least 5mg of foliate a day, vitamin B Complex & magnesium, they all help your body process the B12 & help keep your levels up. Have you had your thyroid & iron levels checked? Vitamin B12, Iron & Thyroid all work in partnership & often if one is low the others can be.

If 12 weekly injections are not enough (crap NHS stratagy), then it’s easy enough to get private injections learn to or self inject.

I've had B12 injections on the NHS every two weeks since 2017. CBA to explain why so often. I know I'm lucky. I don't have PA but recently had a major issue usually known only to affect those with auto immune issues. Just read B12 is one fuck fuckity fuck. Off to read up on it.

Hi all, I have been reading all of your posts and honestly feel like this is a breakthrough. I was first diagnosed with an underactive thyroid when I was 22 (now 32) and have been TTC for about 18 months now with no success. I have had Previous pregnancies prior to thyroid diagnosis but no live births. 1 miscarriage one TOP.

My husband and I have gone through multiple fertility tests and all of them have come back outstanding no issues with semen or egg quality ect. They have no idea why why are struggling, I have been to the GP to ask for help and had multiple blood tests but they won’t test me for anti TPO - hashimotos as it’s not a standard test on the NHS, I also noticed on three of my blood tests in the last year it says I have above the high reference limit mean cell haemoglobin levels.

Does this sound like I might have an auto immune disorder like hashimotos and therefore more prone to something like pernicious anemia and the above high limit of haemoglobin means I might have a vitamin b12 deficiency and therefore causing my infertility.

Has anyone experienced this and what did you do to get a diagnosis as my GP is having none of it and just keeps telling my my bloods are “normal” and to keep TTC naturally.

x

Olive it might be worth starting your own thread to make sure people see and answer your post or it might just get lost in amongst the answers to the OP.

Re blood tests, don’t take the GP’s word that they’re normal, ask for a print out so that you can see where on the normal range your results fall. Sometimes there’s a large ‘normal’ range and you can be at one extreme of that range, rather than optimal, so you still feel crap.

Amazing thanks so much, I got them printed today so going to get a fertility consultant to look over them where the gp doesn’t want to know. I think it has some weight so fingers crossed. Also thanks for the advise I’m new here so will add my own post. Xx