Firstly can I say how helpful I’ve found this forum with the issues I’ve had with my health recently.
I’ve recently been diagnosed by my GP with b12 and folate deficiency. I had a blood test (in the UK) and was told my level was 125 (not sure what unit of measure). It was suggested I had a course of four b12 injections, and to start folate tablets (5mg per day) after two b12 jabs.
My initial symptoms was severe pins and needles in the genitals (to the degree I could hardly bear clothing next to my skin). This may sound weird, also the feeling of blood flowing in my genitals.
I later realised I had odd sensations of my soles of my feet - again the sensation of blood flowing. I also noticed my trainers felt odd on my feet, and a feeling of sand in my trainers.
My feet also feel like they are burning on times - and sensations when water I shower feels strange.
Are these symptoms familiar to anyone? I feel like I’m losing the plot!
Since the jabs, pins and needles have reduced from being very intense and not knowing what to do to ease them, to mild irritation. The other symptoms are still there. I had the jabs approx 3 weeks ago. Am I expecting too much too soon? Or could this be a mid-diagnosis?
I’ve been told I’ve had another blood test to see if I’m absorbing the b12. I haven’t had the results yet.
I understand there is a close relationship between b12 and folate - but don’t understand what levels need to be brought up first and the impact on each other.
my grandmother had penicious anemia and had b12 jabs. I have many symptoms, such as lethargy, tiredness, lack of concentration, etc.
I am 45 years old.
Thank you to anyone who can give me any advice.
Written by
Madman070578
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I believe the reading of 125 refers to your B12 . It indicates a very low B12 content in your blood . Yes very deficient as up to 80 % of that reading can consist of inactive B12 .
I’m afraid that good knowledge of B12 deficiency / Pernicious Anaemia is lacking in the medical profession. You need to know this fact now that you have your diagnosis. P.A. is a very likely reason for your deficiency as your grandmother had this condition Genetics definitely play a role .
Good that you have started treatment . Have to say that symptoms can intensify once treatment starts working . You can feel worse before you feel better . So don’t fret if this happens .
There are many symptoms of B12 deficiency.. B12 is the major component in myelin which is a sheath which covers the nerves . So sufferers can have a myriad of symptoms . I can sympathise with your feet symptoms. My feet burn like hell and that is now permanent , as I got treatment too late .
Pernicious Anaemia is incurable and treatment is FOR LIFE , by injection of B12 . PA is the main cause of B12 deficiency.
Other causes include lack of B12 in the diet . B12 is only obtained from animal sources . Vegans and strict vegetarians should supplement B12 tablets .
Stomach surgery which interferes with the parietal cells which produce the Intrinsic Factor and stomach acid necessary to absorb B12
Abuse of Nitrous Oxide gas
Various medicinal drugs including metformin ( there are many others)
Infestation of fish tapeworm .
Pernicious Anaemia is. an autoimmune condition .( There are over 100 autoimmune conditions which seldom come alone ) In P.A. Antibodies are produced which destroy the Parietal cells , so no B12 can be absorbed . The antibodies can sometimes ( about 50% of the time ) be discerned by a test called the Intrinsic Factor Antibodies test (IFAB) . So you can see how unreliable that is . Many doctors don’t realise this fact , unfortunately .
Patients vary a lot in how often they need the injections to keep well. Doctors also don’t know this . I need an injection every week . Some need daily injections. Some are OK with every 3 months . It is not known why this is . Tablets do not help in P.A. though sometimes sub lingual lozenges help between injections, and mouth and nose sprays . Don’t help me though .
I have to obtain B12 single use ampoules from German online pharmacies , as they are a prescription item here in U.K. . Not so in Germany where they are obtainable over the counter . I self inject weekly to keep well,
I hope that I have given you a littje insight into B12 deficiency.
Our ex Chairman and founder , Martyn Hooper, has written a few books on the subject , obtainable from Amazon .
Thank you for your very helpful response. I’m waiting the results of a second blood test which will indicate if I have pernicious anemia (I’ll find out from my gp what measure he was looking for in my blood for this diagnosis).
I’m expecting I am, as my grandmother had it (this forum helped me identify that it runs in families).
Although some of my symptoms have improved significantly since the jabs (like I am less irritable and have more “go” in me, I still feel fatigued and have milder pins and needles burning.
Interesting about the jabs - I felt “normal” for about 5 days after my course of four b12 jabs with hardly any symptoms. I’ve felt so unwell (I’ve said to my wife for a long time how generally unwell I’ve felt but couldn’t identify a reason). I’ve forgotten how it feels to feel “well”.
The test you refer to as a test for P.A.will be the IFAB that I also referred to . It may not come up positive if you do have P.A. Do remember this . If it comes up positive you do have P.A. If it comes up negative , it does NOT mean that you don’t have P. I know this is hard to fathom , but it is so. .Many doctors do not know this, and will interpret a negative result as meaning that you don’t have PA
Our former chaiman Martyn Hooper had 3 tests before the antibodies showed up . ! I was lucky -they showed up first time . Best of luck !
I agree with wedgewood. So, I am just repeating your data back to you :-
1) I’ve recently been diagnosed with b12 and folate deficiency.
2) I had a blood test (in the UK) and was told my level was 125 mg/L.
Please get hard copies of your blood tests. It will say the date, time and whom analysed your blood.
3) You were informed of the low vitamin B12 result at time, date and by whom.
4) You commenced 1 mg/ml of Hydroxycobalamin intramuscular injection at time date by name at where. The treatment regime was 4m four injections. Sorry I do not understand this bit.
5) After 2 injection at time and date, name of person suggested commencing 5 mg Folate orally which was commenced on date.
All of the above is putting in a logical order.
Many of us can relate to your symptoms. Many of us can confirm that with good treatment :-
1) Symptoms are reduced/improved.
2) It is not a misdiagnosis - this is why getting Evidence proving Diagnosis is extremely important.
3) Yes, you are expecting too much. Treatment and recognition for P.A./B12D is poor. Many of us self-inject. Recovery can take time and depends on :-
a) Length of deficiency.
b) Severity of deficiency.
c) Age.
d) Height.
e) Weight.
f) Other illnesses, operations and autoimmune diseases.
You are not loosing the plot. You have a family history. Please inform your doctors that your (maternal or paternal) grandmother had this illness.
Pernicious means ‘deadly’. It affects our Nervous System which is our Brain, spine and there are 7 trillion nerves in the Human Body.
You are on a journey, start reading and consider joining the Pernicious Anaemia Society. Membership is about £20.00 a year.
Ah, my handle - I’m not really mad (although some would say am! I’m more witty (although I seemed to have lost that through this illness).
Thank you for this response, it is really useful. (My wife told me I over-analyse - but I like to know what is going on!
My current GP seems to be more sympathetic to my condition and has made this much progress in a 6 weeks (after a previous one told me to go home and see how symptoms improve with no diagnosis/treatment!). Interestly my GP suggested I took A-Z vitamins and minerals - anyone view on this?
I’m 45, 5”10, around 12 stone - and I’m not aware of any underlying causes - apart from my grandmother having PA. I had some severe allergic reactions when younger so I suppose this is an auto-immune condition.
So I’m just waiting on my blood tests now I’ve had the course of four b12 jabs and had two weeks of folate tablets. Any other advice apart from finding out what he is checking for? Iron levels also sound important?
Oh I am completely barking mad. Woof. (Think Black Adder and Lord Flasheart).
On here you can read people’s biographies.
Collate your data.
Keep it in a Paper file.
Keep diaries.
I take every single vitale amine, mineral and several amino acid because that is ME. Not you.
Many of us take A-Z vitamins and minerals. Great advice, congratulate your doctor. Write down when you start taking it.
I have to take mine all separately because of my particular illnesses.
You will become your own Record Keeper, Care Coordinator and you will work with Doctors.
If you walk into a Doctor’s Office with a file, they will take you more seriously.
Even this, I’m 45, 5”10, around 12 stone is no good to me. I need to see you, the way you walk, the pallor of your skin, I need to shine a pen torch in your eyes, test your reflexes, listen to your chest etc etc.
Yup, very familiar symptoms - and a huge number of other weird things besides - like your phone is on vibrate and ringing against your skin, but it's not there at all, cold fingers feel like they're on fire, beetles crawling under your skin, a hot bath feels cold (be careful!), like someone is waving a stinging nettle over your skin.... And, and, and! My levels weren't as low as yours but I could barely walk or talk by the time I got any treatment. If you get enough B12, (and that could mean you having to do daily self injections) plus the folate, and supporting supplements - all vitamins and minerals, but especially B vitamins, vitamin D, potassium, magnesium and iron, then you should be OK.
Symptoms are your body's way of telling you that something is wrong so you should aim to be as symptom free as possible in time.
Be aware that nerves often feel worse before they feel better, as they heal, but welcome this: it's part of the process! Don't expect it to be a quick process either - I've been SI daily for nearly 8 and half years and I'm doing great now but still improving!
Welcome to our "club"! Be prepared for a roller-coaster ride but keep aiming for better and better - it's good when you get there!
It sounds like you've still got symptoms, but are no longer having injections? If you've got a low B12 level and neurologic symptoms (e.g. tingling) then you should continue the injections until you stop feeling an improvement (irrespective of your B12 levels moving forward).When i was first diagnosed i only had 6 injections, then stopped. A few weeks later i was even worse, so we restarted injections, but it was all very stop start until i saw a haematologist, who got me back on regular injections for several months before i started to very slowly reduce the frequency once i was feeling better.
Yes, I only had four injections. Do you know what your b12 levels were? I saw a sudden improvement after the jabs but although I feel better than I did when I started, I still don’t feel anywhere near right. Still have mild tingling and nerve irritation.
I’ve now had another blood test to see what my b12 and folate levels are.
My B12 was 129 and my folate was 7 (normal). I initially had more energy after my first 6 injections, and then nose dived again a couple of weeks later. I restarted injections and took folic acid a couple of weeks after that when I nose dived again. I finally started to feel properly right this summer (15 months later, I was symptomatic for 6 months before seeking treatment) all tingling stopped and plenty of energy again. Then nose dived again in September as I'd carefully and slowly weaned down to 4 weekly injections and failed to recognise the signs that I was getting worse until the tingling came back (in retrospect the signs were there at least 2 months earlier). I initially went back to weekly, then every 3 days and now eod injections, and I'm starting to recover again.
From what you've said, you need more injections. There are various resources in this group and on the PAS website (I believe) which will help you steer your GP in the right direction.
B12 levels are only half the story. I've seen someone asymptomatic with a level of B12 so low that the lab couldn't detect it. Whereas I was symptomatic initially when my levels were >200 (I hadn't realised they were checking my levels, I only found out subsequently when I looked at my records).
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