Still feeling shattered

I hope you start feeling the benefits soon till the know ur limits we are not supermen and wonder women cos we will pay for it afterwards 😉

Hello Ian

There are people who do not get a full benefit from the NHS B12 injections.  This is because they are inferior to for example the US injections.  The latter can be bought and self injected. Seriously suggest you speak to the Pernicious Anaemia Society https://pernicious-anaemia-society.org/

joansie

I am fortunate enough to have a very proactive GP. During one of my visits to him recently I was somewhat surprised with what he told me; he said during the Victorian times the asylums were full of people who had lost their minds. He went on to say there are some in the medical world who now think alot of these poor souls may have indeed been suffering from PA. He further stated that King George may have also been a sufferer (as in the film 'The madness of King George').

Now back to the here and now; I am curious to learn from you all what you all think brought on your illness/condition/disease. Personally, based on an awful 6 months leading up to my diagnosis,  I am convinced mine was as a direct result of stress. 

I was diagnosed B12 deficient in March, but have tested negative for PA. I also have low ferritin (iron). This seems to indicate that my iron stores have become low (women's stuff), and low B12 may be preventing me from binding dietary iron and replenishing them. So I'm getting B12 jabs and iron supplements.

I think MadgeC has a point about it being hard to absorb much B12 from a single shot, and smaller, more frequent doses might be indicated. You are on monthly ones, mine are 3 monthly. Trouble is, the NHS economies make more frequent jabs hard to get. And that's why I think MadgeC's suggestion of B12 oils might be useful, as they would represent a little dose every day. I assume the skin absorption works much as hormone and nicotine patches do.

I have a blood test tomorrow, and a jab later in the week. I think my B12 levels dwindled a month back, so I wanted my test left as late as possible to get a clear indication of whether I am right. I've felt better again in the last week - maybe the iron is now rising.

It takes a while to find a way through the tangle of possible causes and various remedies, and a bit of trial an error comes into it. Once some pattern of response is established, you and your doctor should be able to devise a regime to minimise your symptoms and protect your future health. If you find the NHS won't give you enough B12 to feel evenly "well", I think that's the time to consider supplementing it by self-injecting or oils. Good luck.

I was told i am b12 deficent a couple of weeks ago i havent been diagnosed with PA though what is the difference? I was told my levels were below 100 and they should be over 400?

I am 28 with two young children, studying a degree and working part time and this has had a dramatic effect. I went to the docs as i was constantly feeling dizzy, sick, had head aches and was losing my memory....basically i felt and still do like i am loosing my mind, i get so confused and overwhelmed by these feelings.

The doctor advised an 'mot' bloodtest to get to the route of the problem and they came back b12 deficent. I have just had the 6 booster needles but im not sure whta happens now? The doctor just gave me a perscription for the 6 and the nurse did them every other day. The doc said i would have the needles every 3 months for life. Do i make a new appt with the doc for them? I am not really sure how it works.

I dont feel the booster needles have had any effect whatsoever and it makes me miserable that everything is such a big effort for me, i feel emotional all the time. I just want the old me back.

I would be really interested in trying the oil, does anyone know where i could get it?

Thanking you in advance.

If you did not respond to the initial doses then you may not be able to utilise that form. Some use cyanocobalamin which has a cyanide atom, others use hydroxy-cobalamine, less common is methyl-cobalamin. Some lack the enzyme to remove the cyanide so the B12 is excreted. Another step is to convert it to methyl-cobalamin. Some have an impaired ability to do one or other. If that were the case it should show up in the blood tests for B12 and homocysteine and methyl malonic acid. Cyanocobalamine is cheaper but some Drs have questioned for years why it is still used.

If the issue is just that you feel you need more earlier then that is a guide. It seems the UK protocol is conservative.

Alternatives include oral doses only 1% or so is absorbed so the daily dose is 1000-2000 mcg. This absorbed even with PA. An alternative is a slow release patch which gives a dose for a week or so over 24 hours. Dr David's patches stick and area good price. Alternatively you can arrange your own injections.

Although it is usually held that you can't overdose. I found that in France they use doses from memory 10x  or maybe more the usual 1000mcg and that was enough to shoot my haemoglobin to 32.

Finally it is also possible that more than one thing needs attention. That could include folate or iron. Really that is where a GP could help.

The research is an interesting read eg Herbert, and quite a bit is known but in practice the understanding is not complete.

so sorry to hear about you diagnosis, I do hope that things will improve for you. It sounds as though you have a good GP if he is doing monthly injections after the six loading doses. Everyone on here has a different story, but this condition can come on slowly over several years. So you get treatment for the first symptom, (mine was breathlessness following several sinus & chest infections). I was given asthma treatment, which helped a bit, then you get so tired you can hardly move. Once the joint pain, skin sensitivity and pins and needles began, then I got a full blood test and diagnosis. My GP only gives three monthly injections, and I get desperate towards the end of the three months. I have discovered a sublingual (under the tongue) spray, which helps, and I know there are nasal sprays and sublingual tablets too. Do hope you will feel better soon? We do have to learn to pace ourselves a bit, if I overdo things for a few days I do tend to have a "crash"! Best wishes Marion