Can anybody give any advise

Hi all. New to this site. I have PA and have just finished a course of 11 loading injections . I'm still feeling awful giddy .low energy brain fog tearful and mood is low.I've had quite a bit of weight loss. Is this normal to still be feeling awful. I'm at the doctors again on Monday due to not feeling any different.I've been off from work since November and should be phased back into work next week. I have an endoscopy next week to check my stomach lining .

I really don't know how I'm going to have the energy to get up let alone do a days work .

Is there anyone that could advise if this is normal to be so wiped out . It started with a cold that then went into my larynx and then on top I had 2 tummy bugs . I'm lucky to work in a private hospital so have been able to get my treatment quicker

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  • different symptoms take different amounts of time to respond to B12 - anaemia will take a few months - neuro can take longer - but it really depends on which system the lack of B12 has affected and is causing the problem. Some people don't notice response for months.

    It is also possible that there is something else going on. Think you really need to talk to your GP.

  • I do get worried about the Neuro side as I have m.e . I'm at the docs on Monday as I know I'm not right . I want to do so much but my body won't let me the giddy side is horrible. I don't know which side I'm lacking in . Its all so new to me. Thank you for relying have a great evening

  • Exactly like that in my case, took 5 /6 month before one day I thought, wow I just did this without having to think about it, I started to sleep more fitfully, felt less tired, improvement in my memory, my vertigo was so much improved, didn't feel the dizziness, migraines drastically reduced in severity and frequency, started to get the feeling back in my legs. After the original injections 10-12, can't really exactly remember, I was prescriped 1 injection every 4 weeks, for life. Then after a few years, all of the sudden I got told (GP in UK) I could only get it 1 injection every 3 month from now on, although after trying this out, all my symptoms start coming back.

    I now visit Doctors Inc in Amsterdam when I am there ,which is fairly regular, to get my top ups, works for me as I haven't plucked up the courage to start doing it myself.

    My nurse suggested,,I should make an appointment with the GP and explain what I told her about how the treatment should really be done for people with clear neurological symptoms. What I cannot understand is why my neurologist can be overruled by an ordinary GP in this. I pointed that out, why refer me and then not take the advise and treat me accordingly? I asked to be referred back to her but I was then told that the neurologist who saw me, was now no longer working for the NHS.

    I am still on top of managing my health this way, also with changes in my diet and hope to be able to continue doing so for the foreseeable future.

    I can well understand how difficult self management can be for many because of the tiredness , the pain etc. You think about it a lot but keep putting it off. In my case it has given me my life back again, I have bad days but not that often, thankfully.

  • Do you know what your Folate level is Handbag1066? Folate is essential to process the B12 you are having injected and it gets "used up".

    Sadly it is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts to repair the damage done to your body and a lot will depend on how long the deficiency/P.A. has been undiagnosed.

    Who decided to stop the injections after 11? You or your doctor?

    I am not a medically trained person but one who has had P.A. for 45 years. Hopefully there are others on here who will be able to give you more advice.

    I wish you well

  • I'm not sure what my folate levels are my doctor didn't say. I've had 11 loading injections the one every month for the rest of my life . I got to the point where I'm worried I have an inner ear imbalance on top of it. Its all so new to me and you put your trust in your doctor. I have had m.e for 8 years now. Today has been awful . Giddy feeling sick brain fog tearful . Thank you for replying and your best wishes .

  • Are you in the UK Handbag1066?

    I would certainly suggest you as your doctor to test your Folate level and ask his advice on supplementing with folic acid.

    The guidelines for the "loading doses" and continuing frequency of B12 injections are below.

    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

    Were your 11 injections given on alternate days?

    I'm sorry to read you are feeling so poorly and hope your symptoms begin improving soon.

  • Thanks for that info. Yes every other day so 2 Injections the first week the for the following 3 week every other day again so had three injections again every other day again. I have been taken a vit d3 tablet to help with my mood . I was taking a multi Vit with iron tablet which I've had to stop with the endoscopy on wed .my arms are bruised on both side due to the injections they did start to get painful nearer the end and my body ached when I had 4 injections to go. I really think my levels are not right yet. Its so frustrating I want to do so much but I'm wiped out . I was hoping I'd be running round like a headless chicken by now

  • Don't forget the Folate. Write it down somewhere and show your doctor or nurse giving the jabs

  • I've taken a screen shot of this .thank you

  • I've been to the docs all my levels are ok. I been diagnosed with Labyrititis on top so been given anti sickness tablets before my endoscopy on Wednesday .

  • Hi there

    Just to let you know how things are going

    Had my endoscopy.

    I've found out I've got a 2 cm sliding hiatas hernia. Oesophagitis los Angeles grade b. And possible extrinsic compression/submucosal lesion upper body annteriorly which I have to have a ct scan for . Do you know if I take reflux meds if it effects the absorption of my vitamin b12 injections .? I really don't want to take tablets on a long term basis so trying to decide on surgery when I see the consultation or meds which I really don't want. I found out I had Labyrititis on top of my Vit b 12 problems so on anti sickness meds which has help a great deal . Wondered if you had any idea about the reflux meds with my Vit b 12 injections each month

  • Hi Handbag1066. Just a thought..B12 deficiency (caused by PA - and other things) is often (commonly) misdiagnosed as ME, CFS, Fibromyalgia, MS...etc., so it may be possible that you've actually had undiagnosed B12 deficency rather than ME. If,you check the symptoms list in the link below, you might find that many of your ME symtpoms are actually the symtpoms of the B12 deficency caused by PA...which may be resolved once the underlying B12 deficency has been addressed.

    Also - PA causes absorption problems so it's likely that you may have other deficiencies which may make you feel very ill and exacerbate your symptoms of B12 deficency. It might be a good idea to ask your doctor to check your ferritin, vitamin D, magnesium and (as others have said) folate levels.

    Just another thought - people with PA often have thyroid problems two (the two seem to go hand in hand) and there are a lot of cross-over-symtpoms. Might be a good idea to ask your GP to do a full thyroid screen (TSH, FT3, FT4, and thyroid antibodies TPO and TgAb). Most GP's only do TSH and this is not enough to give true thyroid status. Also - thyroid antibodies are important since people with PA (an auto immune disease) often get other autoimmune diseases (like Hashimoto's thyroiditis- another autoimmune disease-diagnosed via thyroid antibodies.

    Recovery happens at different rates for different people (some fairly quick, others take a little longer, but it may be that you need more frequent B12 injections.

    Where neurological,symptoms are present (and you have these), as clivealive points out, you should be having the intensive neurological regime of treatment for B12 deficency. This is important for effective neurological repair to take place so please discuss this with your doctor - be aware that many doctors do not know about this regime of treatment so you may have to take 'evidence' and be prepared to educate your doctor.

    Sorry but I'm short of time tonight...so I'm going to insert some links below. The links will take you to information that will tell you the most important things you'll need to know about PA and B12 deficency and will help you understand what your doctor should be doing for you in terms of treatment and ongoing blood tests / support etc.

    Please keep posting when you have questions - and there are likely to be lots 😄 - there are lots of lovely knowledgeable folks here who will pop along to help.

    Good luck, let us,know how you get on....here's some links....👍

    LINKS TO GUIDELINES AND INFORMATION

    evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

    onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to know before seeing GP)

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

    stichtingb12tekort.nl/weten... (B12 Deficiency, PA, & Relationship (or not) to Anaemia & Neurological Symptoms)

    👍

    P.s. There are two very good books that it might be worth reading...don't have the details with me right now but I'll post them for you sometime tomorrow 👍

  • Hi Handbag1066.

    Two books you might find useful:

    Martyn Hooper's 'What You Need to Know About Pernicious Anaemia & B12 Deficiency' and Sally Pacholok's 'Could It Be B12 An Epedemic of Misdignoses'.

    👍

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