Another one bites the dust !

Hello all,after 36 years working as a Health Service Professional I was diagnosed with PA last October.The last year has been terrible -the fatigue and everything that goes with it to the unsteadiness or "The wobblies" as my wife calls it.

I share as with most people here the lack of support from my GP clinic who have no clue about PA - one GP asked me what did I think the problem was ! I replied MS and he told me only young people get MS !

My job is a very active job attending cardiac arrests to obstetric emergencies and I am really struggling and sometimes feel I cannot give my 100% that each patient deserves so this led me to an appointment with my Occupational Health Department.I spoke with great detail to the Health nurse about my neuropathy problems that affect my gait - walking as if I am drunk - unable to hold a pen some days,unable to draw up drugs because I cannot open the pack the syringe comes inunable to walk up or down stairs,dizziness,loss of balance and the lethargy.

Looking at my blood results the b12 level was 193 and the measurement scale starts at 190 !

The Occ Health nurse disappeared for 10 minutes to consult with the trust Occ Health physician and when we continued with our conversation she started to mention had I thought of retiring through ill health because the trust physician called PA a chronic disability and I could finish work 3 years early.

I am due my next Hydroxocobalamin in February and to be honest I was hoping my symptoms would disappear but no joy.

So it looks like I will be saying farewell to the NHS in a some what bitter sweet fashion.

Any one here recieving any benefits from DWP ?

Regards to all,

Paul

30 Replies

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  • My immediate reaction is this:

    PA isn't a disability. It only gives rise to disability when not noticed, diagnosed and treated adequately - that is, all three of those.

    I'd encourage you to get your thyroid hormone levels checked as well. That is Free T4, Free T3 and TSH. An awful lot of people suffer from both low B12 (whether or not strictly PA) and low thyroid hormone levels.

    Finally, I'd wish you well. It must come rather like a boot in the kidney to get to this point and be so desperately badly let down.

    (I am more of a Thyroid UK person - so am obsessed with thyroid. Others here know vastly more about B12. They will respond.)

  • It took about eighteen months to be diagnosed and reading between the lines here it seems I am not being treated adequately !

  • With helvella on PA and disability ... and would add that I find it incredible that the NHS would rather encourage skilled staff to retire early than give them the treatment they need and deserve as I suspect part of your problem is that you are currently being chronically undertreated for your B12 deficiency ... for want of a phial of injectable B12 that costs less than £1 a time.

    Fume, fume ...

    What treatment are you actually receiving - bi-monthly maintenance shots?

    A few years ago I was where you are - but knew that I was chronically undertreated so took things into my own hands - and now I'm free from depression and anxiety for about the first time in 40 years - yes I still have bits of neuropathy but my energy levels are good - my balance is back ....

    Please read through the pinned posts ... and feel free to look at old posts and ask questions etc. If you aren't a member of the PAS already then I would encourage you to look at the website and consider joining and may be contact them about your personal situation.

    pernicious-anaemia-society....

  • Believe me SimboWales there is life after P.A. I was diagnosed 45 years ago and I'm still "clivealive" at 75 :)

    Seriously though, I can't quite make out what treatment by way of B12 injections you are having. Did you start off on alternate day jabs for two weeks and then every twelve weeks? Would that have taken you from October to next month?

    Ideally you should have been treated as follows - especially per the third paragraph

    Treatment of cobalamin deficiency

    "Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

    Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

    The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

    "

    Another question I have is was your Folate level tested and do you know the result? Folate is essential to process the B12 you are having injected.

    I wish you well.

  • Thanks all for the quick replies ! Both my folate and thyroid levels are within normal limits so no problems with those.I had the six loading doses back in October and the next is due next month - my GP goes by the initial booster treatment then 12 weekly. Next time I get to see him I will point out the BNF advice concerning the neurological treatment.

    Obviously PA effects everyone differently but I am worried that the neuropathy will not disappear.I am finding out that the health professionals do not know that much about PA from nurses to physicians.

    Once again thanks everyone.

    Paul

  • SimboWales,

    "Within range" is most definitely not sufficient. The reference ranges for thyroid hormones are far too wide. And TSH is diabolical. If you haven't, get your numbers and the reference ranges for your lab.

  • Please don't forget the point about the 8 week frequency for P.A. patients.

    Also Folate gets "used up" processing the B12 so the level needs to be kept "healthy".

  • SimboWales - it is important to rule out THYROID with the CORRECT testing. Being told your results were normal is not sufficient - you really need to have copies of your results. I agree with helvella - I too am on the Thyroid UK forum here on HU and with almost 50,000 people and a very active forum - we have seen it ALL. Time and time again - people are told they are normal - when all that has been tested is the TSH. Well that is a Pituitary hormone - and tells the Thyroid to produce T4. So you need the FT4 - FT3 testing along with the anti-bodies - Anti-TPO and Anti-TG.

    Hashimotos - or auto-immune thyroiditis is the most common cause of low Thyroid in the world :-) When you have one auto-immune condition then others can exist. So important to rule low thyroid out. There are 300 symptoms relating to low thyroid.

    Please click onto my name at the top of this post and read of my journey - will only take a couple of minutes ....

    I too have been let down by the Medics - so am now paddling my own canoe ..... :-) Happy to help .....

  • "about my neuropathy problems that affect my gait - walking as if I am drunk -"

    Have you considered joining the PAS (Pernicious Anaemia Society)? They offer support and information and can in some cases intervene on behalf of members.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    martynhooper.com/

    This is a link to Martyn Hooper's story on his blog. I think it mentions gait problems.

    martynhooper.com/2010/09/21...

    I'd recommend the following two books

    1) "Could it Be b12" by Sally Pacholok and JJ. Stuart

    2) "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. He has written other books about PA and B12 deficiency including "Living with Pernicious Anaemia and Vitamin B12 Deficiency"

    I'd also suggest reading the whole "BSH Cobalamin and Folate guidelines" if you haven't already.

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines.

    Info on UK b12 treatment is about a quarter through BSH Cobalamin document.

    Link to BNF B12 treatment

    evidence.nhs.uk/formulary/b...

  • I am a member thanks.

  • Interesting blog that,I have fallen out of bed twice, fallen flat on my face too many times to recall, given up driving so have to catch the bus to work and even fallen over on the bus much to my embarrassment ! I have to be careful when walking because the moment I take my eyes off the floor I stumble.

  • You maybe could try adding some sublingual b12 to your regime. I use the 500mcg garden of life methylcobalamin spray from Amazon and have raised my serum b12 from 153pg to over 900pg/ml in just 8 weeks and that's without any injections.

    There are lots of different options available to boost b12 between injections and I'm by no means an expert but it's working for me.

    Some people suggest methylcobalamin is better for healing neurological issues but there's research pinned to here that will also say hydroxycobalamin is equally efficient. It's a bit of a mine field.

    I buy mine from here Garden of Life Kind Organics Methylcobalamin B12 Spray (Vegan, Gluten & Dairy Free, Raspberry Flavour, 500mcg, 58ml) amazon.co.uk/dp/B00K5NEPJY/...

  • Have you seen a neurologist?

    I saw several in the early stages and it was all put down to depression, psychosomatic, hypochondria even though I had typical symptoms of B12 deficiency. I knew there was a physical problem and felt very let down.

    None of the neuros I saw ever gave me any neuro tests with my eyes closed so if you see a neuro perhaps they will get you to walk heel to toe with your eyes closed and carry out a romberg test(balance test).

    Romberg test

    Needs to be carried out by doctor, not safe to try at home.

    A patient is asked by doctor to stand with eyes closed and feet together. If patient is steady with their eyes open but unsteady with eyes closed, that indicates a positive romberg test.

    Out of the neuros I saw, only one showed, in my opinion, a good level of knowledge about B12 deficiency so make sure you're well prepared if you get a neurology appt.

    I'd suggest you search on this PAS forum for threads that include proprioception (awareness of body in space). Proprioception problems can be caused by b12 deficiency.

    In the PAS library section, there is an article on SACDS (sub acute combined degeneration of the spinal cord) available to PAS members. I believe some forum members have shown this to their GPs as part of their efforts to get adequate treatment especially if they have b12 deficiency with neuro symptoms.

    pernicious-anaemia-society....

    Lists of b12 deficiency Symptoms

    pernicious-anaemia-society....

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    People can have more than one cause of b12 deficiency at the same time.

    Causes of B12 deficiency

    b12deficiency.info/what-are...

    I read that once a person has developed an auto-immune disease their chances of developing another one increase. Have other auto-immune diseases been ruled out?

    pernicious-anaemia-society....

    Thyroid

    helvella 's suggestion of putting your thyroid results on HU Thyroid Uk forum is a good one.

    thyroiduk.org.uk/tuk/

    Coeliac

    Have you ever had a Coeliac test?

    coeliac.org.uk/coeliac-dise...

    I am not a medic just a person who has spent years trying to get answers.

    there's another interesting blog on the B12 deficiency Info website.

    I found these blog posts thought provoking.

    b12deficiency.info/blog/201...

    b12deficiency.info/blog/201...

  • Thank you .

  • Simbowales, I second what hellava says. Like you, I started to get three monthly injections and still felt rubbish. Eventually my doctor had to treat my underactive thyroid as it kept dipping just below the accepted level, but I still felt bad so took early retirement. Not happy with my doctors surgery, I eventually changed, had all my bloods done again because I still felt bad and found that at one point my thyroid level had gone to nearly 10 and was then 4.5 -within range but still high. My level is now about 0.5 and I SI sub cut - new doctor still doesn't believe in less than three monthly - and have more or less got my life back.

    Get hold of your results and make sure you are not just within range with your thyroid and also all the co factors and maybe go down the SI route for more B12. Good luck

  • Why don't you buy your own b12 and self inject.

    I also work for the nhs and self inject weekly and sometimes every other day.

    I still run out of energy some days but pretty much lead a good life.

  • Hi Catherine, I'm thinking of si route , how and where do i start to look at how do go about it. Had PA for 3 years (age 46) been having 2 monthly jabs at surgery. Last jab I had the nurse has referred me back to Gp to review frequency- I'm hoping that new GP will let me continue with 2 monthly but if not I will need to go down SElf inject route. I know I won't manage on jab every 3 months. Live in UK . Hampshire. Seeing GP on Wednesday.

  • For more information on SI, including sources of supplies you could look up my profile by double clicking on my name and see my post "My Experiences".

    Good luck with getting your life back!

  • I went for about 5 years with neurological symptoms-unbalanced gait-had to hold on to furniture and walls to walk sometimes, dizziness, tinnitus, fatigue and a other symptoms. I have been self injecting methylcobalamin for about a year and a half and had to keep increasing the frequency. For the last 10 months have been taking every other day injections. All of my neuro symptoms have resolved except for the tinnitus which is very slowly getting better Fingers crossed it will go away!

    So, I think if you had B12 much more frequently, you would not have ongoing neuro symptoms.

    Best of luck and please consider self injecting so that you get enough B12 to heal! :)

  • Basically if you are showing ANY symptoms your levels are too low and every day you are further damaging your body. Long term this leads to all sorts of horrible things, even before heartfailure, dementia and cancer, etc.

    You are well able to inject yourself and you will be much better off financially to keep your wages coming in and buy your own ampoules and supporting supplements, even if you have to inject every day. If you give your body what it needs before the damage becomes irreversible there's no reason why you can't lead a full life.

    For more information, including sources of supplies you could look up my profile by double clicking on my name and see my post "My Experiences".

    Go get yourself well again! Good luck!

  • Thank you all for your help and suggestions.I have never been on a forum that is as helpful as this,I am truly humbled.

    Diolch un fawr !

  • Falch gallwn helpu

    (glad we can help)

  • I too support the self injecting route. I've worked out each jab ( serum, 2 needles, syringe and swab) costs me £1.25. I buy the serum from Germany and the rest from Amazon. Had never given an injection in my life --- I was 61 when I did the first--- and followed a YouTube video but within 2 weeks the tinnitus, shaking, anxiety and breathlessness had gone. I climbed a ladder into the loft and didn't fall off! I injected every other day for a month, then left 2 days between , now I'm every 6-7 days. Still a few problems with my feet and toes but I've stopped dropping things.

    Don't be pushed into early retirement if you don't want it. If your GP's not willing to help, think seriously about s.i. Good luck.

  • SimboWales don't be pushed into retirement, they are not thinking of you, it's all about money! If you have time off sick (which you are entitled to, on full pay for a certain amount of time) there will of course be a cost to them replacing you. If I was you I would get a sick note for 3 if possible, take the information re:every other day injections until no further improvement for neurological issues and try to get him to restart, tell him how bad you feel and you want to be able to get well enough to go back to work. Also at the same time order your Hydroxo from Germany and your needles etc. and self inject in between. No need to tell Dr as they cannot tell as levels will be falsely high anyway. The sooner you get the extra B12 into your body, the sooner it can heal. Do not let them force you out, get your contract out and have a look at your employers sickness rules. I studied Employment Law so know a wee bit about employer tactics! Hope you get better soon.

  • Don't assume your ataxia is because of a B12 deficiency. See a neurologist and find out for sure. There are many possible causes and they can run tests to see which it might be.

    Do you take other B vitamins? Too much B6 can cause exactly the symptoms you describe.

  • I do not take any vitamins at the moment,looking into it though.

  • There is also Gluten Ataxia - check it out :-)

  • SimboWales , I definitely would not consider taking early retirement at this stage. I have lost YEARS of a good quality life due to being undiagnosed. Sooo many symptoms that my doctors missed for years that when you put them all together they scream B12 deficiency/PA, along with very low folate & Vit d. My sister made me go ask for a thyroid test as she was so concerned that she was losing her vibrant, funny, "can do" sister to being a stumbling, exhausted, too hot when every one else was cold or vice versa, vegetable. The results of that test started me on a road to recovery, but wasn't continued by my doctors. Thank God I found this site, because the wonderful people on here have helped me so much. I was terrified of injecting myself but became so ill again that I felt I had to take matters into my own hands and now self inject, after so much help here on how to do it safely and easily. I have also been given excellent information regarding co-factors that I would not have understood on my own. Also gave me the knowledge I needed to go back to my doctor and insist on having more injections for neuro symptoms. My doctor agreed to monthly jabs because she could not dispute the fact that one symptom alone, my slight bladder leakage which was going to require surgery, is now completely non existent as long as I have more regular jabs. I do NOT let my doc know I SI as I am sure she would withdraw her support, but my life is mine and not hers so I, like you, no longer trust the people I once trusted with my life. As you have the training I would suggest you take matters into your own hands and self inject as you are not going to get the support you so urgently need from the NHS. You will soon see if it is working for you or not. Best wishes and good luck x

  • SimboWales While you are sorting this out take some time off sick, you are entitled to it and you have paid into it for all these years. Ask Dr for a 3 month sick note until everything has been checked and then if still working on those neuro symptoms get anothe one until you are fit. I'm not sure if still the case but NHS will pay you full pay for a considerable time. Had someone in rehab who was paid full wage for a year, check contract etc. You can retire later if that's what you decide. Hope it all gets sorted soon. You are entitled to be off sick while you get the B12 regime sorted and feel well and strong to work again.

  • just keep up with the meds. Take folic acid and Vitamin B Complex tabs. Do you need iron? What is your ferritin store level? Ideally needs to be well over 150. Can take a year to feel anything like Normal'

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