Hi, after being very unwell for a number of years and seeing numerous docs that were telling me anxiety constantly!I finally got a diagnosis of savere b12 deficiency possible PA. My reading was 85!!!! Iv been losing my hair and marbles! Iv never felt so unwell and am now half way through my loading dose! I feel I'm going crazy and have had so many problems. From waking up every night with racing heart to ibs symptoms. Even my eyes are affected and Iv had bells pausey twice I think due to lack of b12 and oxygen getting to my brain and nervous system! I can do nothing but lie down and feel extremely nauseous! When will this end and why is it such an battle to get anyone to listen to me?! I can't cope much longer! This condition has stripped me of who I am. I just want to be normal again. I also have a savere lack of appitite! I also have thal minor so am aneamic from lack of iron which they can't replace. Is there anything I can do to be me again?
B12 deficiency and so desperate for h... - Pernicious Anaemi...
B12 deficiency and so desperate for help!
here is hoping that getting the B12 that you need does actually start to improve things.
If you are in the UK then as you have neurological symptoms the correct regime for loading doses would be 3xweekly until symptoms stop improving - with a review at 3 weeks, followed by maintenance doses every 2 months (though even that is a long way from being enough for many of us.
Have you made a list of your symptoms and are you monitoring for improvement against them. B12 is used by a lot of processes in the body so how long recovery takes depends on which processes are involved and how much damage is involved - anaemia takes a few months to correct - nerve damage takes much longer and can sometimes be permanent.
pernicious-anaemia-society....
If your folate levels were low then it would be good to have those monitored as you can easily become folate deficient when you start B12 treatment as the demand for folate goes up.
Unfortunately medical professionals just aren't as aware as they should be of B12 deficiency - something the PAS is trying to work on but it takes time.
Thank you for taking the time to reply. Yes I have savere nuro problems. I do take folic acid for my thalassemia anyway. I hope it's just a waiting game and il be ok as time goes on. If the doctors had listened to me two years ago I would not be in this awful state. I have been getting horrible Side effect from the jabs but maybe this is because I was so deficient for so long and maybe a shock to my body. Maybe I have other problems they havnt found yet.... because of my thalassemia minor I am unsure what other vits I can take. The problems Iv been getting with my heart scare me and wake me every night. In 4 months Iv only had two full nights sleep.
suggest that you ask your GP about other vitamins and minerals - or a pharmacist given the other conditions you have.
It might also be worth asking about monitoring of potassium levels given the presence of different anaemias.
It is very early days with treatment and unfortunately it isn't uncommon for people to actually feel worse before they start feeling better.
Is it normal to have heart pain? It's not constant but it is scary. I will certainly take your advice. Thanks again
its difficult to say - with the B12 levels you had then I'd expect you to be suffering from severe anxiety which could be where the heart pain is actually coming from. You would really need an examination from a health professional as 'heart pain' covers a multitude of sins. Low oxygen and chest infections can also cause 'heart pain'.
Just a reminder as well that this forum isn't a substitute for good quality professional medical advice.
Yes I completely agree. I would only use this as a guideline. To be honest it's nice to no im not alone or going crazy like they have been saying. I used to be such a happy person and now I dnt even recognize myself. The GP has requested me to have a 24 hrs heart monitor at home I see what's going on there. Till then I'm just taking pills to keep me calm.
You're not going crazy and it's a shame constant visits to the Drs have many suffering with B12 issues feeling like they are losing their marbles. In the midst of trying to diagnose myself I phoned the MS Society and the guy on the end of the phone suggested I type out a list of all my symptoms and how I've been feeling. I had already tried to keep a diary but my muscles in my forearms were weak and my handwriting had become awful. I ended up typing up my symptoms and reaction to antidepressants and anticonvulsants over 4 pages! I think my Dr probably thought I was a hypochondriac although it did get me a referral to a neuro but 6 months of pestering eventually paid off. Stick at it and keep going back to the GP if you don't think you're being listened to. In my experience very few GPs see past the standard B12 serum test. Hope you feel better soon
Ms as in multiple sclerosis? 😳And thank you
Yep. Multiple Sclerosis. My job does me no favours as I read and writer about drugs and diseases so like to scare myself about all the nasty conditions. The tingling in feet and hands plus the cognitive dysfunction (brain fog) had me worrying I had MS. As the Drs thought I was worrying unnecessarily I phoned the MS Soc. More for advice and reassurance. Thankfully this forum helps me stay calm. As does Yoga and Pilates. Horrible panic attacks while on antidepressant for misdiagnosed anxiety had me rethink things and head to my nearest yoga class. The breathing techniques help calm things down. Especially at times when you do get a bit het up and feel everyone thinks you're mad! B12 jabs also help too in my case! 
I'm so glad glad you dnt have MS! I also have a heavy and sometimes painful left arm and my feet drag but this only happens since my jabs so hoping that passes in time. I really appreciate every reply on here! Thank you so much to take the time out! I like you Aldi like to look things up and scare myself to death! But what other options do we have when medical professionals dnt listen!
The doctors are the ones that make you feel your going crazy! They have an ignorance because of a lack of knowledge in my opinion
I think also it's the lack of providing an alternative that may be causing the issues and ignoring clear guidance from the BSH.
I totally agree with a previous comment. You need to see a haematologist with expertise in treating Thalassaemia and Pernicious Anaemia as soon as possible. This excellent forum provides first class information and can assist in consultations with your doctor. However, it is no substitute for proper expert medical care when the situation is as complex as yours.
I trust you will very soon find someone to treat you with the expertise and consideration you deserve.
Good luck!
I don't know about me having heart pain, but the palpitations and skipped beats are really scary. It would skip a beat or maybe even 3 or 4 and then BANG! when it came back.
Remember if you give yourself shots. 1 ml is equal to 1CC.
Hi,
I hope you find the answers you need.
Are you in UK? I'm asking as patterns of B12 treatment vary from country to country.
Some links about PA and B12 deficiency (mainly UK info)
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Risk Factors for PA and B12 deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAs (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
B12 blogs (UK)
Martyn Hooper's blog
There is an interesting blog on "B12 Deficiency Info" website.
PAS (Pernicious Anaemia Society)
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone so messages can be left
If you suspect PA , it may be worth joining PAS.
PAS is based in Wales, UK but has members from around the world.
UK B12 documents
BSH Cobalamin and Folate Guidelines
If you're in UK, I'd recommend reading whole BSH document.
b-s-h.org.uk/guidelines/gui...
BMJ b12 article
UK B12 treatment
BNF British National Formulary Chapter 9 Section 1.2
bnf.nice.org.uk/drug/hydrox...
cks.nice.org.uk/anaemia-b12...
UK B12 treatment info is also in BSH CObalamin and Folate Guidelines.
More B12 info in pinned posts on this forum
I am not medically trained just someone who has struggled to get a diagnosis.
Wow! That's a lot of info thank you very much! And yes I'm in the U.K. They dnt seem to know much over here.
It all seems very complicated and scary when I'm being told that these injections will fix me eventually 😢
I hope you start to improve soon.
It can take some people a while to show any improvements although some people notice improvements very quickly.
Some people find that their symptoms increase for a while before starting to improve when they start treatment.
I also have a curve in my lower spine and all my bones have started clicking! Am I just panicking here or should I be concerned?
Hi Danni82, sorry you are feeling so unwell, my readings were mid 60s when I was diagnosed so I promise I do know how you feel I have all the symptoms you list and more, dont give up you are not going crazy and can and will improve over time but it is a matter of finding what works for you as everyone seems to react differently to treatment. I find that the extreme nausea (Which I had for almost 4 years) has settled a lot by me having a couple of tablespoons of homemade live yogurt every day, normally in the morning and sauerkraut with my evening meal. I also make sure that I take in some form of fruit juice ,orange,lemon or cider apple vinegar with my meals as I believe the acid works with what I have eaten and helps it to break down ,my nausea has not gone completely but has improved greatly. You might find that wearing sunglasses when the light bothers you helps too, sounds crazy but I have to wear them in the house in November when its raining at times but it helps with the eye disturbances so hay who cares!!!!!!! Do as much research as you can Danni and try and find what works for you ,but you are not crazy and you are not alone.
Hugs and all best wishes
Dani I know what you are experiencing I also thought I was going mad.My B12 was similar to yours 79 and I was suffering from every symptom including waking up in the night with thoughts,mostly irrational,racing in my mind.Along with the tinnitus and insomnia I honestly thought I was loosing my mind.I hope you have an understanding doctor as that is half the battle to recovery.If treated properly I'm sure you will really feel the benefits. I've just started self injecting after traumatic encounter with GP from hell.I have discovered that most GPs in Scotland,where I live do not work for the NHS but are run as independent businesses by the GP partners who are paid incentives for reaching targets in certain areas.I don't know if other parts of UK are the same.Things like b12 injections are not included in bonuses so I think that's why they are not interested in us.I felt as low as you last week but thanks to the people on here I am more informed and with the help of my family I'm taking matters into my own hands. Good luck and I hope you recover soon.
Thank you so much for your reply. I'm sorry your going through this. The feeling that I can't breathe and my heart is awful. I have my 4th shot of loading dose today. Dreading it as it makes me so sick the same night. I suppose it's just a case of just cracking in with the jabs till they work. My docs have been useless! In fact I'm thinking of seeking legal advice as they have ignored me for two years about this and now I have so many nuro problems x
I was left upset and humiliated by a GP because I gave her evidence that I hadn't been given correct doses and all my symptoms had returned.My family ,including my son who is a surgeon want me to complain about her but how would I prove how she treated me.Thinking about her smirking face still upsets me.I don't want to ever ser her face again.I hope you can make a full recovery with the correct doses.
I have no idea what dose I'm even on... that's awful! Why do we have to convince them we are not well?! Iv been asking for two years to see a bloody specialist and got refused till now! You should complain! It's awful x
You should be getting every other day until your symptoms stop improving the every 2 months.This is what I was supposed to get but didn't which resulted in my symptoms returningso try and make sure this is what you are getting.I spoke to a consultant haematologist who is a friend of my sons who gave me advice.When I told the GP what he had said she was totally dismissive and insulting.
I believe you should have already been seen by a haematologist because of the thalassaemia combined with B12 deficiency unless the GP is very experienced in dealing with both of these conditions. You should at least see a haematologist now to establish the correct treatment of these interlocking conditions
It's certainly worth seeking legal advice from a no win- no fee lawyer who will take up the fight if they believe the case is strong enough. If nothing else it will give you a sense of control and being able to do something about your situation.
I really feel for your distress.
Thank you! Apparently the haematologist dismissed my referral as my thal hid the b12 deficiency. Iv only just found this out! Since then they going the lack of b12 in an now asking for an urgent referral
I too have had to self inject. I had been to numerous doctors and was tested for everything over a number of years telling them of fears that I had dementia as I couldn't remember anything! My head would have a "clicking" sound constantly. I was surviving on a maximum of 4 hours sleep. Had constant pins and needles in my hands. Suffered from severe anxiety and depression and ended having "burning tongue" which I believe has resulted in terrible bad breath which I believe is coming from the gut. I have had numerous checks with dentists only to show my teeth are fine and daily probiotics have done nothing to alleviate this problem.
Whilst I had been told I had iron deficiency nothing big was made of it by GP's so I didn't think it could be related to my symptoms. I only cottoned onto B12 deficiency as I had so many of the same symptoms when googling other options.
I also fogot to mention that I have also been suffering from extreme body tremors since December last year.
I have given up on GP's and have started injecting myself daily with Neo- B12 injections. I am onto my 4th day. I plan on doing this daily until I start to see results hopefully good rather than bad.
I feel I have nothing to loose aside from financial as I have already spent a fortune trying to work this out. I may as well try B12 shots!
I have had the same experience for years.Then,on a visit toGreece this sued,symptoms became so bad I could scarcely walk,balance,eat(I lost fifteen pounds in three weeks)....was taken to a competent Greek GP...(most of them are very competent indeed,and actually LISTEN to their patient and consider ALL the patient's reported symptoms TOGETHER.....and was put onto Vitamin B12 injections urgently,and advised to insist,on my return to the UK,that I have neurological examinations for the effects of a long delayed B12 blood test.My GP here now tells me that"We have a different protocol here"....and refuses to implement the treatment prescribed by the COMPETENT Greek doctors who actually DIAGNOSED the problem.Finally,I have been diagnosed with pernicious anaemia......so log undiagnosed that I have permanent neurological damage.My GPs answer?We have to "move on"...... though,unfortunately,she seems to be moving on in the wrong direction.
How disgusting! How can they treat us this way? When I went to Morocco last year I was very similar! Maybe the heat makes us worse?
Hi Boob7 ,
Might be worth you starting your own thread. Did make me think that maybe UK sufferers struggling to get a diagnosis should consider going to Greece.
Have you considered joining PAS (Pernicious Anaemia Society)?
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717
PAS might be interested in your story of being diagnosed by a Greek doctor then refused treatment in UK and the fact long delay in treatment has led to permanent damage.
No question, at 85 you have severe B12 deficiency and that my dear is PA. You also have subacute combined degeneration which is damage to your spinal column and nervous system. Get on the B12 shots and stay on them forever, you should be able to taper down to one shot per month but it is a life saver literally. Nerve damage heals very slowly, but improvement will be seen in a few weeks. Your blood is not maturing (red cells) therefore you will be short of breath and have low iron also. As your blood improves with the B12 shots that will get better quickly compared to nerve damage. I had no detectable B12 by the time a doctor found out what was wrong. After several doctors telling me I needed counseling. Take your shots! It will save your life.
I feel like my body is giving up. Last jab of loading dose tomorrow. My tongue has become so pale! All I can do is lie in bed 😢
I have much the same as you do I getting so tired asking for help.They tend think you hypercondract my readings are under a hundred but folic acid is good.
My understanding vit b9 and vit D3 has some involment.It would be in long run save on NHS if did blood test more relevant and listened to.
There book by martyn hooper well worth reading very helpful may give you right questions to ask
Hi Dani82
I have read your posts from a while back now, but was wondering how you are now? I do hope that you have had some relief from the symptoms you were having.
I am experiencing a relapse within one year of being diagnosed because my B12 levels dropped again because I tried to get to 2 monthly injections (as advised by my GP and another consultant). So I'm back to square one but worse. I upped my injections to weekly but I now feel worse than I did to start with. I really think that the hydroxocobalamin doesn't agree with me. I have been getting the heart palpitations in exactly the way you described below. Can you tell me if this passed eventually or did you try a different form of B12? Any nuggets of your experience much appreciated, and I do hope you feel better.
Paramedic views on B12 deficiency
B12 deficiency and b12 deficiency anemia
B12 deficiency
New here and desperate for advice on B12 deficiency
B12 Deficiency and B1 thiamine deficiency?
