Feeling shocked and isolated.. Help!!

So only around 8 weeks ago I finally had the courage to go to the doctors, threaten to tie myself to the chair unless they took a blood test and insist on them taking me seriously...

At 24 I left school at 16 and have worked with horses ever since. A job/lifestyle I live for and can't ever give up. But when I found myself earlier in the year with back pain/numb legs and severe depression leaving me unable to leave the house I found myself longing for the old energetic me to return. All doctors for the last 4 years have just given me anti depressants but I think I've always known it wasn't what it was, but me being silly I have buried my head in the sand and soldiered on.

So when my results came back that I was B12 and vitamin D deficient I felt a sense of relief that it wasn't in my mind and my back didn't need operating on as the lack of ability to use my legs was from my nervous system being attacked.

However, living in the type of community I do that is rural and isolated I have found myself feeling sad that no one understands that when I have days that I can't "cope" with they are rude and make snide comments at me. People my age are dismissive and don't understand how painful it is when my throat closes and tounge swells that I can't speak.

I feel determined to get my career back on track and start to swim as it really is my let down in life. I have had my 6 injections however I seem to feel like my symptoms have become worse?! A little saddening but I keep reminding myself I have managed for 4 years like this so what's a few more weeks eh?!

I have joined this site in the hope that I can read and educate myself on what I am suffering from and read and be inspired by others who have had to deal with it themselves. Thanks for the education I very much appreciate it as my doctors have done nothing to educate me!!

16 Replies

oldest β€’ newest
  • Hi Suze1392 It is not uncommon for some symptoms to appear to get worse before they get better as this is a sign that the B12 you are having injected is starting to repair the damage done to your nervous system.

    Some find it helpful to list all their symptoms and daily score them on a scale of 1 to 10 on their severity or otherwise noting the improvement or disappearance as time goes by.

    Sadly there is no time scale or guarantee that all symptoms will be completely "healed" as a lot depends on the longevity of the deficiency and the severity of the damage.

    As you are still suffering symptoms after your loading doses you should perhaps go back to your doctor and point out to him/her the following especially the highlighted bit:

    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 ΞΌg 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 ΞΌg 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"

    I note that you were deficient in B12 and D both of which are derived from eating animal products like meat, fish, seafoods, eggs, dairy produce etc. Does your diet include sufficient of these.

    Also do you know what your Folate level is as this is essential to process the B12.

    I know exactly what you mean when you say that you "felt a sense of relief that it wasn't in my mind" as I had a similar experience "walking on air" out of my doctor's surgery after she told me I had Pernicious Anaemia. This was 13 years after gastric surgery removed two thirds of my stomach by which time I guess my B12 level was near zero and I was walking around like a Zombie. I was just six years older than you are now.

    I wish you well and hope that you have a quick recovery

  • Hi there,

    Thankyou for your response. I now realise how very vague my GP has been. Nothing was explained to me, not even my numbers. It was done on the phone and was told to just book a B12 jab in with the district nurse. It wasn't until the nurse asked me how many injections I was to have that I realise how little has been explained to me. It was the nurse that first told me the phrase "penacious anemia" and that they were going to give me 6 jabs.

    My diet is what I consider balanced, I love meat, vegetables salads and particularly seafood which is why I was shocked to find I was suffering from something like this. Can stress cause a big change in my body like this? Just the year it started was a traumatic one.

    Thank you for your response, I'm going to contact my GP in the morning to ask for more details into my results and explain what is going on!

  • I didn't know when I replied to you yesterday that you had been diagnosed with pernicious anaemia otherwise I wouldn't have "gone on" about your diet - except perhaps in relation to your low Vitamin D. Some symptoms of D deficiency are similar to those of B12 so if you are being treated for both simultaneously it may be difficult to assess improvement - but I guess D will be the first to "mend"

    Simply put - having pernicious anaemia means the body cannot process B12 from food via the stomach - hence the need to have it injected.

    Martyn Hooper (CEO of the Pernicious Anaemia Society - to join costs only Β£20 for a year's membership) has written an excellent book "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency". It's in plain English and very easy to read and can be bought online.

    Please do check your Folate level with your doctor and be assured that with the right treatment there is life after P.A. as I'm still "clivealive" at 75.

    I hope all goes well with your doctor this morning.

  • Hi Suze1392,

    Unfortunately I'm not in a position to educate you, but I am here for exactly the same reason.

    I'm late 20's and about 2 weeks ago my GP told me I was both B12 & Folate deficient (160 and 2.9 respectively). Unfortunately no further tests ordered to find out why, or plans to replenish my B12 yet. My treatment plan so far is just take an antidepressant and multi vitamin every day, eat animal products and Marmite and play the waiting game for 4 weeks until my next appointment.

    I find it hard to concentrate on what I want to ask a doctor during the busy 12 minute slot they allocate me and get left with more questions than answers, and likewise I'm from a rural community (not sure that really makes a difference in my case) but people are quick to make comments like I'm just lazy or bored or fed up and just need to exercise more or "stop falling asleep" - it sometimes feels like unless you've got polkadot spots all over yphr body, grow horns or your head falls off then there isn't really anything wrong and it's just a case of "you need to get motivated!". Pfft!

    I've had symptoms for quite some time now, around 12 months and started to believe what people would say about me just needing to cheer up, excercise more so I'm not tired all the time, focus more on what I'm doing. It wasn't until I was forced to go to the Drs for another reason I needed antibiotics for that I just mentioned my symptoms whilst there thinking I was being silly and my doctor sent me for the blood test.

    The waiting game is certainly frustrating!

    Hope you find the answers you're looking for on here!

  • Hi iStevie. Of grief, this is just disgraceful. Anti-depressants and multi-vitamins will not fix your B12 and folate deficiency. What on earth is your GP doing.

    You should not have to wait another four weeks for treatment to commence. Your B12 is very low. And if you have neurological symptoms, all the guidelines state that treatment should commence immediately, in order to prevent potentially irreversible neurological damage.

    Really sorry but I'm out of time (and brain) so please could you see the reply I've left for Suzie1392 (it's in this thread) all the information in that is also relevant to you (sorry to do it like this, but I really must sleep now πŸ˜–).

    Please go back to,your GP - print and highlight evidence relevant to your case, from the pinned posts - you may have to be firm with your GP as many are very ill-informed about B12 deficiency, pernicious anaemia and the appropriate investigations and treatment.

    Good luck and please shout if you need any further advice or support...lots of knowledgable folk here to help.

    πŸ‘πŸ‘

  • Hi Suzie1392. Sorry, but I have to be really quick - just to say you should be on the neurological regime for B12 injections...following loading doses...one every other day until no further improvement....this could be for many months. This is to a) effect proper neurological repair and b) prevent the development of irreversible neurological damage. Your GP may not know this.

    You may have to chase your GP for this but if you have any problems, please post again and people will be able to help and advise. As clivealive says, information about is on the BNF (your GP will have a copy on the desk) and also in the pinned posts (as below).

    Have a read of the pinned posts to the right of this page when you log on...lots of information there, including diagnostic and treatment guidelines, plus information about B12 deficiency and pernicious anaemia (the I formation your GP should have discussed - but probably doesn't know πŸ˜–).

    Hope,your GP checked your folate level? B12 and folate work together so if your folate levels is low, your body cannot utilise B12 properly. Levels should be in the top third of the reference range.

    GP's often say blood results are normal when they are not. If you always get copies of your results and post them here, together with the reference ranges, folks can help,with interpretation.

    Please do go back to your GP to get the right treatment...you should not have to suffer like this for the lack of a 55p (ish) injection. And you should not be put at risk of irreversible damage.

    And oh so sorry about the lack of understanding...very upsetting and everybody here will know how you feel - we've all suffered this in various ways.

    Please do post here if you have any more questions, if you need help,or advice, or if you just want to have a good moan.

    And let us know how it goes with your GP...we can help with that if the going gets tough.

    Take care πŸ˜€ x

  • Depression is one of the symptoms. Start a logbook and try to assess the severity of each symptom relative to your injections. Treat the injection as day zero each cycle. You will most likely find you need more frequent injections.

    Use the log as evidence to your GP and provide a copy each time you visit. Explain to your GP what you are doing to get him/her to buy in to the idea and to get them past the "I've got a hypochondriac on my hands stage." That we all go through. Anxiety is another neurological symptom.

    You may end up self injecting so break the ice with that idea and start researching how you can do that.

    The logbook also supports the short term memory loss. You can use the assessment to monitor your progress as nerve damage takes a long time to repair the demyelination. It is thought that if the axon is gone the damage is permanent.

    Vit B6 and B1 are supposed to support nerves. Also folic acid and a daily multivitamin are neede to support the B12.

    Try to identify a "marker" symptom that you can reliably use to gauge how low you get between symptoms.

  • Take care with the B6 - too much B6 can cause potentially irreversible peripheral neuropathy and parasthsis πŸ˜€.

    Certainly, do not take more than 100% RDA unless advised to do so by a GP (many multi-vitamins contain more than this and if you take a B complex and a multi-vitamin, then this will be way over the 100% RDA - and far too much.

    Best to 'save' the self-injection route until after the GP process has been exhausted. Many do self-inject, but only as a last resort, when the testing and diagnostic processes have been exhausted with medic's. People here help with that if it's a route you eventually decide to take.

    πŸ‘πŸ‘

  • Brilliant answers, as usual, from Foggyme and others. There is a tiny chance of a reaction to your jabs so people are always encouraged to get their first one done at a clinic.

    I have always worked on farms and with horses so know what you mean. On a positive note be very thankful that you have a diagnosis while you are young and have your life ahead of you. Please make every effort to get the right treatment for you ASAP to prevent further damage and get well. I'm 44 but only 18 months into treatment and have suffered for over 20 years. I SI daily.

    With lots of B12 and supporting supplements I now ride twice a day most days, work with cattle, in a pub, run an orchard and vineyard, do people's gardens, houses, etc, etc. Oh and now I'm starting to look after myself again and have a life too!

    If you give your body what it needs it should work again OK!

    Good luck! x

  • Hi Foggyme

    I have three monthly b12 injections, take sub lingual b12 and a b complex tablet daily which contains 1.4 mg vitamin b. Given your warning about b6 above, would you say I should stop taking the tablets?

    Chris

  • Hi Folkestone,

    I've recently done some bedtime reading on this and Berocca B-Multi-vit contains 507% of the RDA of B6 (7.1mg) which they claim is a safe and even recommended level. They do state anything more than this may be harmful in their FAQ under "Should I take more than 1 tablet a day" - Andwer: No!

    It makes me wonder if they take into account the fact you may have these vitamins naturally in your diet anyway and so their supplements may actually be pushing you over the limit as to what is safe!

  • Thank you for your response. I am a vegetarian inclining towards vegan - I don't get too many b vitamins from my diet - at least I don't think so which is why I take the b complex tablet daily

  • Hi Chris. The NHS recommended daily amount (RDA) of vitamin B6 is 1.4mg for men and 1.2mg for women so...sounds just about right to me πŸ˜€.

    Some people do take (and need) considerable more, but only do so on medical advice.

    In America the upper limit is 100mg daily, the NHS have hedged their bets and set the scale at 10 - 200mg daily (both for short periods).

    The problems is that many people do not know that B6 (pyridoxine) can cause problems...and treat it like B12 - the more the better! So words of caution are useful pointers in the right direction. Also a problem 'cause we're all individuals and a B6 level that gives symptoms to one person, may not do so with another.

    Interestingly, While I was checking the UK RDA's I discovered that too much B6 can also cause heartburn...didn't know that so thanks for asking the question.

    Vitamins, minerals and such like are tricky little things πŸ˜–πŸ€”πŸ‘πŸ˜€

  • Thank you for your response. I have received so much help, information and caring from members and administrators - I am really grateful.

    Chris

  • I thought I'd read somewhere that Pyridoxal-5-Phosphate, the 'biologically active form of B6' was less (potentially) harmful but can't find that info any more.

    Best not to take too much B6 for too long in whatever form, it seems.

    Anyway, it's perhaps useful to know there is this other form of B6 which doesn't have to go through a conversion process in the body so may be more effective for some.

  • Hello Suze1392,,,you have come to the right place,,,there are so many people who have gone through so many things and have gained the right knowledge to help you along,,,,good luck in the information quest,,,ttfn from Karen.

You may also like...