Still feeling shattered

Posted , 19 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Having recently been diagnosed with PA, I have had my first 6boosters recently and need to have a jab monthly. What concerns me most is that I still feel totally fatigued. Is this normal? It's almost a month now since my 6 boosters and can't wait to get my monthly 'fix' next week as I feel like I have done an royal marine assault course. 

Whilst the medical world had played this condition down as being very common, I was not prepared just what a dramatic effect this ailment would cause as I am now deeply concerned for my job because of the symptoms.

4 likes, 52 replies

Report

52 Replies

Prev Next
  • Posted

    Hi I don't have any advice I was diagnosed with PA back in early June had my 6 shots and the gp has let me start on every other day due to neuro problems. And yet a 5-10 minute walk is like doing an assault course. I've been recommended the book P.A the forgotten disease.  Like you other than getting the info of loading and was told ill be on this for life. I wasn't told anything else the side effects how I can help improve it with diet or anything else. I just feel like they gave me the injections (I self inject) and left to it it wasn't till I spoke to theirs I needed to take iron as I'd been told by Dr will waiting for IF results. Anyway I'll be following ur post in hope ill get some answers too 

    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 😉

    Report
  • Posted

    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

    Report
  • Posted

    Hi, I've had PA for 7 years & I'm 21. First of all I totally understand how you feel as I suffered from an experience near enough the same where I was hospitalised. At first my injection we're once every 3 months after the first 6 jabs but now after 5 years I self inject every 4-6 weeks. Do ask your doctor if that's possible because I know many that do so. It can be so hard managing it with the fatigue & even pins and needles. You need to find what works for you, keep pushing to get it done sooner, you know how your body works. Good luck x
    Report
    • Posted

      Hi Jane. I am really surprised that you have this disease and being so young!! I am curious as to what your symptoms were when you eventually diagnosed with PA. 

      I just can't get my head around this ailment as I had up till now, led a healthy,full and active life (i still play rugby!) up till a few weeks ago I had never even heard of it. Puttin in Perspective, it isn't fatal but my oh my, nothing prepared me for a rapid downward spiral with regards my health. I can barely walk 400yards without feeling like I've jus run a marathon! I was expecting to almost pick up from where I left off pre-diagnosis but that just seems a distant objective now. I have to be fit for the role I do in my job and now feel I will now need to start preparing for some bad news on the Two of the three loves in my life - rugby and my job. sad

      Report
    • Posted

      Hi Ian, I was quite shocked too, I actually couldn't believe it when I was eventually diagnosed. Before I was I led a youthful life I was preparing for my GCSE's being the normal typical teenager & then suddenly something just went wrong, I literally couldn't get out of bed I couldn't make it to school, I was losing my memory as well as feeling in my feet and hands due to pins and needles, my hair started going grey & that's when I knew something was wrong. It took at least 6 months for the doctors I diagnose me which seemed like years and by that time I had permanent neurological damage in my nerves which was a bit of a bummer. I got signed off school as I was unfit to attend & now I'm here 7 years later trying to live a normal life which can be hard at times. The only upside is I self inject so I can do it whenever I please, but I've only been doing it for the past 2 years. Waiting 3 months for every shot was a nightmare like I couldn't wait for my next fix and I literally couldn't manage then it got moved down to 10 weeks until I was put in hospital due to my pins and needles coming back but this time I had them everywhere even in my eyes and on my lips it was the worst feeling ever and then the hospital advised that I take it much sooner as my body wasn't getting enough. It's Soo hard at times but you know how your body works and if you believe you need it sooner don't stop until you get it. Good luck x
      Report
    • Posted

      Also Ian it can be hard balancing work and p/a but you cannot over do it as it will only cause more harm to your body than good, it's sad & some people don't realise how hard having p/a is. It's not noticed at all because they see it as a controlled dies ease which is sad because the pain some of is go through just goes unnoticed x
      Report
  • Posted

    Thanks everyone for your responses. 

    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. 

    Report
  • Posted

    (Apologies for the silly icon after my sentence relation To 'The Madness of King George'.... It was a typo - Big hands struggle on my small keypad on my phone!
    Report
  • Posted

    It took me a few weeks to respond to mine, and I didn't feel much better until I got an iron supplement I could tolerate well. The B12 deficiency caused by PA would have it's own set of symptoms, and the blood iron anaemia that goes with it causes serious fatigue. Make sure ALL your nutrient levels are good, and consider the possibility that there could be more than one problem to fix - perhaps folates. Six jabs followed by a monthly boost suggests your B12 levels were very low, so it may take a while to correct. There are several different forms of cobalamine used in jabs, and it may be that you will find one more effective than another. So keep your doctor informed about your response or lack of it, report any digestive issues, and insist on repeat testing immediately before each jab to ensure you are processing and recycling the B12 well. Above all, ask for print-outs of all your blood test results so you can track progress. You may not understand the technicalities yourself, but people on this site should help explain them.
    Report
  • Posted

    Hi Ian, Further to my earlier email. I see MadgeC has now responded in greater detail, and she has been a great help to me.

    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.

    Report
  • Posted

    Hi,

    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.

    Report
  • Posted

    Some of the information here is inaccurate so it pays to check. It is not clear from your account whether or not you responded to the initial doses or not. If you did then it may be that the issue is when you need a further dose. That varies with individuals.

    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.

    Report
  • Posted

    Hi Ian,

    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

    Report
  • Posted

    Hi all i am 23 years old and was diagnosed with vitamin b12 deficiency when i was 22 i am a mum to a 21 month old toddler i am constantly tired and run down All the time i am finding it very hard and i dont know what to do.with myself it doesnt help that my partner constantly shouts and blames me for being like this i am just at my wits end and dont know what to do about it. 
    Report
    • Posted

      Hi Chloe, it sounds as though you really are having a bad time at the moment. Having a 21month old toddler is enough to leave most people exhausted ! When you also have B12 deficiency, that really is a double whammy! Are you getting enough B12 injections, did you get your six loading doses when you were first diagnosed? Are you also taking extra multi vitamins, this is recommended as, when B12 is low so are lots of other vitamins. You need these other vitamins to help your body use the injected B12. My other suggestion is to take a B12 supplement if you are only getting three monthly injections from the doctor. These can be tablets, if you have no digestive reason for the low B12, or you can buy a spray to use under the tongue. I believe patches are also available on the Internet. Do hope that things improve for you soon, Best wishes Marion

      ps you have posted on Ian's original question link, and as this has been unused for a time you may not get many answers. Might be worth doing a fresh post under "start your own discussion"? I only picked this up as I was following the earlier posts.

      Report
    • Posted

      Chloe it is pretty straightforwad.  If you have B12 deficiency (and anything less than a reading of 500 is deficient.  Iit ought ideally be 1000) then take vitamin B12 daily in tablet form or in liquid oral form.  You can get this online or at the traditional High Street health shops.  If you do not know what your actual diagnosed reading is, find out by asking your GP the direct question.  You then know your starting point and your target.  All the best.  Joansie   
      Report
    • Posted

      Hi Chloe, I know the feeling only too well!

      Since writing my thread a few months ago, I am thankfully much better now and all thanks to folic acid my GP has prescribed me daily. It seemed the monthly B12 jabs weren't having any effect u tip I started taking folic. I now know folic is important to assist B12 to be absorbed into the body. Apart from Neuro symptoms I can report feeling much better. So, maybe you could consider folic too and also maybe sitting your partner down and reading him his horoscope because shoutin at you as as much help as a chocolate fireguard!! Good luck

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up