Can anybody please give me some advice? I have not been diagnosed with PA my gp will not do me a blood test and I cannot afford to go private at the moment to find out.
Blood test show I had vitamin b12 deficiency
I have been self injecting firstly hydroxocobalamin and now I’m on methylcobalamin. It’s been 7 months now since i started I feel so much better but I have no clue what I’m doing. I have been injecting daily as If I miss my injection my breathing difficulties and nerve pain comes back
I have a few questions if anyone could answer them please
- anyone here had a vitamin b12 without having PA?
- anyone had to stay on loaded doses? I read an article we’re a lady had to inject everyday for 3 years? Any similar experiences?
- are there any specialist out there that deal with b12 were we can go to for advice as I have no medical professionals help and I feel like I’m in the dark?
Also how long typically do people self inject for? I’m Relatively new at this whole thing so if my questions seem silly your understand why 😊
Thank you
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Antstarr
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Hi Antstarr P.A. is just one of the causes of Vitamin B12 Dericiency.
Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Can you see yourself among any of the above people?
It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
I am not a medically trained person but I've had Pernicious Anaemia for 47 years.
What a very clearly set out and helpful reply Clivealive.
I have been relying on my doctors to use this rationale with me but appear to have hit a brick wall. I have had all the classic symptoms for years and fit many of the risks including existing autoimmunity (Sjögren’s and Hashimoto’s), surgery, long-standing use of H2 blocker, PPIs and anti acids.
I’m now struggling badly with unexplained gastritis and have gastroenterology scratching their heads looking for more answers while my neurologist is relying only on my serum B12 for guidance and is prepared to diagnose me with functional overlay rather than treat me for likely B12 deficiency.
I don’t know how to get past this wall of indifference to be honest and am going to be forced to look elsewhere for guidance ie accessing B12 injections privately.
Thank you for your reply, i think my diet could have contributed towards it but I also had iron anaemia all at the same time so thanks for that information.
What I would like to know is if it’s just a b12 defiancey caused by a one of the following would I be on injections the rest of my life? Thanks again
"Normal" (I hate that word) people have a few years store of B12 in their liver which is topped up from their daily diet of meat (animal products including fish, seafood, eggs and dairy produce) which are natural sources of Vitamin B12.
If however you have an absorption problem with your digestion and are unable to process the B12 in your food then (like as when the alternator in a car stops working and no longer charges the battery) the liver is not replenished and you (like the car) will cease to run.
You say "i think my diet could have contributed towards it" if that is the case and you cannot or will not change your diet to include the above animal products and you don't have an absorption problem as listed in my original post then supplementation by injection or tablets will eventually restore the level in the liver over time.
Please remember that I am not medically trained and read carefully the advice given here by others
Anaemia isn't present in 25% of people who present with B12 deficiency.
PA itself (an autoimmune gastritis) is extremely difficult to diagnose formally these days - the normal test gives false negatives 40-60% of the time so a negative doesn't rule out PA as the cause of a B12 deficiency. As Clivealive says - there are a lot of potential absorption problems that can lead to B12 deficiency.
The symptoms of B12 are wide ranging because it is used in a large number of processes that go on in your body - the process that produces new red blood cells is just one of many so, despite the name, PA isn't really about anaemia and anaemia isn't the source of all the problems associated with it.
Symptoms pointing to either B12 deficiency or PA for me are:
1. pins and needles everywhere including groin and face
2. Tremors, trembling and vibration all around my body
3. Twitches, muscle spasms
4. Unexplained gastritis (despite years on PPIs and H2 blockers for GERD and Gastritis!)
I have tested myself using the bicarbonate of soda in water test and it confirms low stomach acid each time.
Other symptoms such as severe fatigue, anxiety, balance issues, constant tinnitus and parasthesia have been blamed on minor age related hearing loss and Sjögren’s but I feel as I’m at high risk and extremely symptomatic I should be offered a trial of B12 injections just to cover all bases. If it worked then it would save not cost the NHS more with continuing investigations - which when found negative normal are used to assert that I have an overlapping functional disorder on top of my autoimmunity..
This feels all wrong but I feel powerless to persuade my doctors to give me the benefit of the doubt🤷🏼♀️🙄
Hi - I followed your link to b12d as I was getting nowhere with my unexplained high level of b12 & I have just had the most interesting conversation with an amazing man Dr Chandy. I learned more from him in that telephone conversation than any medical people or websites! What a wonderful man he is & so knowledgeable.
Isn’t he wonderful that man saved my life honestly my B12 deficiency’s was untreated for a long time and no one was willing to help got so bad my optic never swelled and I had severe nerve pain, dr Chandy deserves more recognition.
That is amazing, I'm so happy for you & you're right Dr Chandy deserves so much more recognition, it was an honour to talk to him I cant believe he is 79! He has given me so much advice & I can't wait to get started!
Good luck to you I'm so grateful I caught your post.
Aww so happy for you, yeah he points you in all the right directions.
He’s writing a book about B12 deficiency as we speak and he has a documentary filmed by the bbc you can get it on YouTube. Did if give you the pharmacy links and what not?
Yes he did tell me about his book & I watched the documentary before I dropped an email to b12d. I didn't expect Dr Chandy himself to ring me, I felt honoured. He has given me details of the correct dosage of meds to take & where to get them & he says he will follow me up. He has given me hope & that's all I have been asking for. 😊
Aww brilliant 👌 people really don’t understand how lack of B12 effects the body. Dr Chandy taught me that the blood test the gp’s use to detect B12 deficiency is in fact just a basic test to measure how much B12 is in the body, he sad the actual test we need is an intrinsic factor that test shows how much B12 the body actually stores and uses. Have you been self injecting today?
My gp stopped injections 2 years ago because he said they were being phased out & my levels were >2000 which they would have been as I was being injected!! Treatment should be for life & he shdnt have stopped the injections! My levels remained high despite stopping the b12 injections & Dr Chandy said I therefore have an absorption problem so I need to be topped up with 1000mg of Sublingual Methyl cobalamin Daily . My gp was of the opinion that my high level was perfectly normal despite having b12d symptoms. I despair - they just don't seem to understand b12 at all.
I'm just wondering, after seven months of daily injections with no sign of accumulation (i.e. symptoms come back quickly after missing an injection), does this not suggest that it is some sort of metabolic problem rather than an absorption issue?
I know that heavy metals (mercury in particular) has caused unrelenting B12 deficiency in some people who are susceptible to it. I believe my wife is in this category.
Hello, my HB levels had always been fine, yet I inject myself twice a week with hydroxocobalamin for already 1,5 year. I also tried methylcobalamin had that was less effective. Thank God I found a docter who agrees on treatment based on symptoms and not on blood values.
I have not been disgnosed with PA & my b12 blood test showed lowish but in range at 275.. Negative for IF.
Yet I had many symptoms ALL listed as symptoms of b12 deficiency, with a known link with Vitiligo that had already caused hypothyroidism.
My symptoms were:-
body tremors, left leg and right arm tremors, mouth tremor, head tremor, total double incontinance,
blurred & double vision,
severe memory issues,
extreme weakness so struggled to walk, get in/out of bed/car/chair, up doen stairs, off floor
Severe fatigue
electric shocks running up arms & legs,
sensation of something crawling up my legs,
tingling over whole body,
terrible indigestion when I tried to eat and on occassions unable to hold my food down.
My GP referred me to a nhs neurologist (6 month waiting list) and for a brain scan (clear) so I decided after sublinguals or a mouth spray didn't work to try b12 injections. I self inject every other day & supplement this with daily sprays of methylcolabin plus a daily low b complex with folate.
I am transformed! Many of my symptoms have completely gone but I still have a very mild tremor in my right leg & left arm, some low key residual neuropathy in feet & my memory whilst better still is poor. Ive lost loads of muscle so have just started to do gentle exercises to start to rebuild.
I find if I lower the frequency of jabs or spray my symptoms come back with a vengence. The same happened when I had Shingles.....its taken several weeks for them to abate. I dont know why this is....am I not building a store of b12 up, is that the reason?
Ive been injecting alternate days for 9 months......I think I will need to carry on this frequency level for life.
My GP is amazed & the neurologist backed my treatment protocol. Am certain its due to Vitiligo universal. (Autoimmune disease over whole body)
Ive learnt to be very proactive & not sit back waiting for the NHS. If I had Id be a very poorly person by now, probably wheelchair bound.
So we are out there......😊😊 you are not alone!
And I am very grateful to the people on this site who helped me. Life saving -literally!
I have some of your symptoms and am desperate to try B12 injections. My vitamin B12 serum test is 427 ( according to nhs normal!!) Waiting for results of private blood results to try convince my GP.
I had the large blood cells which showed up after hospital blood tests. The test was even highlighted as being out of the "normal" range. GP said nothing.
I had another test about 6 months later and despite massive oral and sublingual doses of B12 the cells were still large.
GP said everything "normal".
I had all the weirdness of B12 deficiency and told them so. Think they think I am mentally ill as all the Doctors in the practice are quite aggressive with me.
This makes me so sad. Supposing I was mentally ill and had some kind of health anxiety syndrome is aggression towards a patient ever the right approach?
I decided to self inject. It helps. I do every other day loading doses for 2 weeks and then once a week. If I get lazy or busy then I will need to do another 2 weeks of loading doses to feel my usual self.
The fatigue is a good indicator for me as I also have auto immune issues. I know when Im fatigued and mentally foggy I need to load up for a while.
My advice would be to ensure you remember the folate and B complex.
I have also found pure Niacin helpful. The flush helps to get the blood to the extremities. I like to think its giving the vitamins a ride 😊
Your doctor is a complete D......d if he refuses to do a b12 blood test. A/ report him/her or B/ change your GP practice or see another GP within the practice.
I have PA, and have the B12 hydroxocobamalin injections. So don’t know the effects of having b12 without having PA.
I have PA. I have been self injecting for years now. I am finding that I can't go with out an injection for more than 2 days. I was not provided more shots until two months ago. In the past I had 1 injection every 3 weeks but still suffered many symptoms until I started worsening again. I was never given loading doses initially. Now I have a doc that I'm working well with, and I'm doing inj. every other day and when I try to wait an extra day twitching, spasms, multiple symptoms come back. I don't know what that means for you, and Im no doc but maybe if your stores are depleted once they are replenished hopefully you'll need less injections. Even when you are feeling better and if your doc stops injections I would continue to have your B-12 monitored.
Thank you so much for getting back to me the issue with me is the doctors are telling me my B12 is normal my last blood test was 800 there saying that’s high even tho I was diagnosed with a B12d deficiency 2 years ago. You said you’ve been on the injections 3 years so it’s not dangerous to take the injections daily ?
Also I have been injecting for 7 months is that still to early to tell
Whenever I get tested my levels are 1000 and up but they usually drop off quickly. It sounds like you need to really find someone to test you for PA. From what I've seen on this site is how long it is before you feel positive lasting change depends on the person and how long/severe your illness was before being treated. My PA was pretty severe for many years before being diagnosed and treated. After that I was not treated properly for another 5+ years. Just recently I've received proper treatment because of the information I've gotten on this site, so it is still to early for me to tell how long it will be before I can stop Self Inj. so frequently. I live in the USA so it is not a common diagnoses for someone as young as I was especially since I am a meat eater, and no one seems to care here to study about something "so easily treatable". I hope this helps. Keep reading the forums you'll see yourself in so many sufferers here and be educated by so many more knowledgeable then me.
I am taking hydroxocobalamin. I started with cyanocobalamin but did't feel it worked well for me. Than I started methylcobalamin but it was too expensive where I'm at and not shelf stable or reliable in my opinion unless it is fresh.
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