Long time pernicious anaemia and still struggling :-(

[amye30]

I was diagnosed with pernicious anaemia in 2003 I have Hydroxocobalamin injections every 12 weeks but I find I start going down hill after about 8 weeks ie really lathargic lack of concentration grumpy and generally miserable but when I see my doctor about it they do a blood test and they say my levels are not any lower than they would expect at this time does anyone else find this? I feel like I'm being fobbed off sometimes surely I shouldn't have to feel so down and tired?

[Gambit62 Administrator]

Your experience certainly chimes with mine - and for me it wasn't just a question of going downhill after 8n weeks it was actually feeling as if the B12 deficiency was getting worse.

I'm not sure that high B12 levels really mean an awful lot as it doesn't tell anyone anything about how you are metabolising the B12 that is there, or anything about what might be going on at a cellular level. There isn't a downside to having high levels of B12, but I think it is more or less impossible to get most doctors to listen. Are you in a position to try supplementing in other ways - eg have you tried sublinguals or sprays? which are availablein high-strength without needing a prescription. Another alternative is to look at sourcing B12 in injectible form from outside the UK - it's available without prescription in France and Germany.

[pvanderaa]

My doctor was skeptical about my complaints and tried to diagnose anxiety. He put me on antidepressants which actually made matters worse.

To convince him, I kept a daily log of my symptoms, the food I ate and drank, my meds and the physical exercise and other stressful events in my daily routine.

I was sorting through a gluten and dairy intolerance along with issues with drinking wine or any alcohol of any amount. I also was developing photo sensitivity. All the symptoms from food and meds were delayed between 6 and 24 hours because the gut was involved. Stress just accelerated my consumption of B12.

The log / diary / journal / excel spreadsheet - what ever you want to call it - provided a memory jogger because I was also having short term memory issues at the time. It helped me also sort though the symptoms from the jab that repeated regularly after each jab.

These symptoms were worse when I was low on B12 before the jab. PAS also helped me indentify these symptoms as detox issues.

The log became evidence for the dr that I was monitoring my conditions very closely. I invited him to keep a copy in his records but he declined. After about the third time he agreed to increase to 8 weeks and finally to 4 weeks for hydroxocobalamin.

When I moved to the USA and switched to cyanocobalamin, I used the same technique to convince my new dr that I needed more frequent injections.

I moved from 30 days to 14 and then to 7 and I finally started self injecting and my dr has basically said I can use what I need but the pharmacy now is the choke point because the dr can only write a prescription for 1 jab a week. They issue me 4x 1 ml per month and won't let me refill any sooner. I ended up splitting the jab into two 0.5 ml on Sunday and Wednesday evenings.

I switched to the evening to be able to sleep off a headache symptom following the jab. Now with my current regime as well as supplementing with folic acid and the occasional methyl-B12 sublingual before a stressful meeting, the roller coaster ride of symptoms has leveled off.

Good luck. Please keep trying to convince your GP.

[Jo55]

I think most doctors sing the same old song. I have had a practice nurse and another doctor in the practice ask my doctor to trial me on 2 monthly injections (unfortunately I can't change to that doctor as her list is full) as they consider it wrong I should be how I am at the end of the 3 months but my doctor still insists I don't need them any more often. I must produce medical evidence of lack of Up take, stress and exercise using the B12 up quicker etc before he will! Like Gambit, I supplement with nasal drops I buy online which do help. Good luck.

[Penni]

I feel exactly the same. I can only go 8 weeks between my injections. I now get my GP to pescribe my ampules of b12 and do the injections myself when I need them

[lesbud1]

Hi do you not take supplements? I take 1000mcg sublingual (under tongue) so that it absorbs straight into the blood, daily, otherwise I would get neurological problems back and very tired. Have you look at the website b12d.org? full of information, a must for b12 sufferers! make sure you get methly not cyna b12, a little more expensive but more natural form and no side effects. You can buy them on ebay. I take no shot methylcobalamin microlingual roughly about 13-16 pounds for 60. I would not be able to function without this top up to my injections.

[amye30]

Thank you all for your comments I will have a look into supplements in between my injections to see if it helps

[JanCymru]

It is so common to feel this way; I know I do!! Energy drops through the floor, my gums bleed, I get shaky and generally feel very low. I have been advised that there is a sublingual B12 spray (I think you can get it in Holland & Barratt) and I think it is called Energy Boosts(?) - peach or apricot flavoured. I have used it but found it didn't really help me, but others have found it useful. Worth a try as a one-off. Maybe ensure your GP can check you out for other conditions too - sometimes things are missed when one diagnosis has been made. Hope that helps. At least you know you aren't the only one feeling this way!!

[Polaris in reply to JanCymru]

I've tried Boost, Pure Advantage sublingual spray and Jarrow 5000 cherry flavoured lozenges,

Personally, I find Jarrow the most effective and you could halve to make them last longer, but Pure Spray is also good and handy for a quick boost of energy at work or travelling - all available from Amazon.

[jalbey]

I have been finding it harder and harder to struggle through the last few weeks before the injection even though I do have mine 11 weekly. I recently had an injection at 9 weeks because was going abroad for 6 weeks to stay with my daughter. She kept saying she was surprised at how much more energy I seemed to have. I didn't have the usual dip. I am usually a very non complaining sort of person although I have had the same experience of presenting ongoing symptoms to the GP and being told my blood levels are okay. I am now prepared to go and fight for more frequent injections encouraged by the recent advise that changes have or are being made to the guidelines on this issue. I believe that the existing BNF guidelines suggest injections at 10-12 week intervals anyway. good luck on your journey with this.

[winterrose-23]

Amye I feel exactly the same Iv'e had pernicious anemia for years and years having hydroxocoalamin injections 11weekly I also have aches pains numbness cramps cfs and depression but find most Drs don't tell you about how this illness effects us so we're left in limbo with this illness

[KiPeRi75]

I got no joy when I suggested to 4!! Dr's that my symptoms were because I needed more frequent injections. I now inject myself every other day and lots of my symptoms have gone or improved.