B12 230 doctors won’t help

[GeorgiaBeaC]

The last few months I’ve been really struggling with my work and basic day to day things the tingling in my legs and the brain fog is getting beyond a joke. I’ve always been low in iron and have just been told in low in vit D also. They tested my b12 after begging. Pernicious anaemia runs in my family and went years undiagnosed. My B12 has just come back at 230 with the threshold being 200 the doctor is telling me it’s perfectly fine and refusing to help telling me I just need a good multivitamin and they won’t give me injections. Does anyone have any advice to help my situation or can you let me know what levels you were when you were diagnosed?

[wedgewood]

The fact that PA is in your family predisposes you to it .

I was at 150 when diagnosed , but I had been unwell for certainly 2years . I was told by my doctor that 150 was OK . I had totally numb feet( diagnosis “ideopathic”) I was exhausted , lifeless , giddy and confused . I didn’t walk properly -I was sent on my way .I luckily had the money to go to a private doctor . Blood test proved PA . That was another piece of luck because that Intrinsic Factor Antibody test is notoriously unreliable , If positive it prooves PA. . If negative it does not disprove PA ( look through the pinned posts for info .)

Also the blood serum B12 test can show up to 80% inactive B12 , which our bodies cannot utilise . ( look up in pinned posts ) Your symptoms should be treated , not those inreliable test results . .

Anyhow my doctor was forced to give me loading doses , then thereafter 1 injection every 3months , which was nowhere enough to keep the symptoms from returning . No amount of pleading would budge her. “ you will get addicted “ “B12 can be toxic if overdosed” So I was forced to self- inject. Thank goodness I did . I have got my life back except that my feet are not 100% But now they only burn like hell , which is better than numbness . If I had got the right treatment quickly , I’m sure I wouldn’t have that problem .

I rest my case .

[jillcur39 in reply to wedgewood]

oh wedgewood ditto to everything you say,. what rubbish about overdosing - I had to plead and plead to no avail 'If I give you an injection you will only come back asking for more' oh the rubbish I had heard. My luck was in (after 2 hell years) by seeing a consultant who said she thought my gp had been cruel - and put me on b12 injection every two weeks.

[Portia1974 in reply to jillcur39]

Hi Jillcur39, can I ask what consultant you saw? As in what type? I've finally (taken me 4 years) got a referral to haematology whom I am hoping will be more b12 aware and be able to did deeper into my bloods.

Px

[mariannewilson661 in reply to wedgewood]

Hi. I just got a B-12 shot 2 days ago and my range was 119.3. I will also have to take supplements thr rest of my life. But I live in the United States. I asked my doctor what B12 ranges are and would like to reclairfy what they are compared to a previous post I posted. My doctor said 180 or above is optimal, 145-180 is a grey area, and 145 or less is deficient. What I'm about to say is NOT based on a doctors advice, only testimonies from people who have complained about people with B-12 levels in the grey area range, but I've read quite a few accounts from people in mid range 145-180 who said that is a low enough range for THEM where they feel tired and drag and are out breath all the time despite bring in "normal" range. Maybe your iron is low then perhaps? Can you ask your doctor to run a thyroid test or complete blood count?

[mariannewilson661 in reply to wedgewood]

Too much B-12 being toxic is rubbish because I saw my doctor two days ago and asked him if I take B-12 supplements thr rest of my life, won't my levels get too high? He said no because you can't get toxic when your already naturally deficient. You also can't addicted. There is no appeal or anything to get high off of regarding B-12! Its not pot! Why are you still with this doctor? He or she is pulling a bunch of bs on you. Find another doctor who doesn't make redicuous, erreneous claims..now if your NOT deficient in B-12, then maybe it can bad for you but ask ask a professional about that

[topazrat]

My serum B12 was 250. I was fobbed off and told that the level was fine and that there was no way that I could have P.A. All of my symptoms where in my head, despite blood results showing that I had had both large red cells 10 years previously and very bad anaemia - I was told that the anaemia was caused by me being 'a silly girl' and not eating properly. I was given a course of iron and nothing else, so I was feeling rotten for all of that time.

The fact that both of my parents have P.A. and so do some of their siblings, didn't seem to ring any alarm bells at all.

I staged a sit in and refused to leave the G.P's room until she took blood for Intrinsic Factor and Parietal cells. Both results came back positive! (Thank goodness, or I would have been truly up the creek without a paddle)

I never did get an apology for the appalling way in which I was treated, but hey, I got a diagnosis in the end.

[wedgewood]

Yes you were treated appallingly . I just cannot understand why the doctors don’t know what we know . And honestly B12 ampoules are so cheap . We should be taught to self-inject , instead of having to find out how to . And be able to buy it OTC -. When will they see sense ?

[fbirder]

Print this out and send it to your GP in a letter asking that you get treated in the way that Hull and East Yorkshire NHS trust treat patients like you. As a borderline deficienct patient you should be tested for anti-Intrinsic factor antibodies and started on a trial of B12 injections.

hey.nhs.uk/wp/wp-content/up...

[Yellowkangaroo in reply to fbirder]

I live in the Hull and East Yorkshire area and only just been diagnosed with B12 deficiency which showed up during tests for another health issue. I'd had symptoms for a while but not knowing anything about B12 I didn't link them all together and go to the doctors about it although they were progressively getting worse. My level was 105 which is quite low I believe... I was phoned 3 days after the blood test and booked in for all the loading shots and told I'll have the 3 monthly injections going forward, even though the anti-intrinsic factor antibodies test showed up negative. After reading many blogs on it I was worried how I'd be treated but I have so far been given everything - along with very kind nurses and zero waiting time every appointment - the only thing I would have appreciated would be being told more about the condition and what to expect, I've felt a lot worse during the injections but apparently you get worse before you get better. My aunt lives an hour north from me and has very similar symptoms for years yet she's always been refused treatment, as I see many people have, so I count myself very lucky.

[fbirder in reply to Yellowkangaroo]

Perhaps we should all move to East Yorks. A lovely bit of the world and a very advanced view of B12 deficiencies.

[Meganmc12345]

My levels were 130 when I was diagnosed with PA