Pernicious Anaemia Society
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19 years old, wanting to self inject B12??? - long post!

I'm 19 years old, female. In October 2017 I was diagnosed as being deficient in B12. I initially went to the doctors for headaches and he ran a complete blood test. My B12 count was 92. I've previously suffered from iron deficiency anaemia with my lowest count being 4. I'm also deficient in Vitamin D and folic acid. I suffer from extreme fatigue, irritability, sensations in my mid-back as if somebody is actually pressing there (I've seen three different doctors who just said it's nothing sinister but didn't try to find out what caused it!). I suffered with anxiety and depression when I was 12 to around 15. Doctor's put it down to bullying but after researching it is likely this was due to my low levels of B12 as it takes years to reach the level of my deficiency. I'm currently taking Fultium D3 800iu twice daily, ferrous fumarate twice a day, cetirizine for allergies, and the doctor repeatedly told me my symptoms such as fatigue, crying (because I have NO energy), and irritability were down to depression! I told her I was not depressed and burst out crying in front of her because I felt I was not being listened to! A second visit resulted in her referring me to a specialist for my fatigue (when asked which department she said she doesn't know and will have to research into it!) and me having to "prove her wrong" by taking a months worth of Citalopram 10mg to see if that eases my fatigue which it has not. She said if the Citalopram does not work she will give me another round of loading doses! I had 6 or 7 loading doses in October/November of 2017. These didn't seem to help and I remember asking every time I had an injection when I would start feeling better. They must have worked slowly because in January I started feeling extremely tired again, sleeping for up to 16 hours a day, had to stop going to college which affects my grades and attendance, had the funny sensations in my back again, mood swings and general body weakness. Went to see the doctor who dismissed my request for a blood test to see if the B12 was as low as last time. He said B12 is not routinely tested which I understand but I just wanted to see if the B12 had gone down really low again as you can't expect a one size fits all with medication. He was really rude and put me on propranolol because the amitriptyline for headaches was giving me side effects. In February, went back to the doctor and begged for my B12 early she said no it's to stay to three monthly cycles. She took me off propranolol and said that would make me more fatigued!! I feel like they keep putting me on and taking me off medication without thinking about the effects it is having on my body! Managed to convince her to give me it at 10 weeks. I felt great for one to two weeks after my injection and then all the symptoms returned! The brain fog is awful, I forgot my pin at a cash point, i can't spell basic words at times, I'm sleeping up to 16 hours a day again even if I'm not going out the house or exerting myself and I'm getting headaches and fatigue again. This means my injection is not due until May (back to three monthly). I'm desperate to have the injection, and I'm now seriously considering self-injecting! How do I go about this? Is it worth self-injecting at my age? My symptoms aren't as severe as other people, but I'm 19, unable to absorb B12, have exams that will influence whether I get into university in September or not and I can't keep staying in bed for what feels like days at a time!

My questions are;

Where should I buy the B12 ampoules?

What size needles should I get? (one for drawing up the B12 and another for injection)

Where can I buy needles and sharps bins?

How often shall I self inject? (my mum is a nurse so she can inject for me until I feel comfortable!)

Has anybody else had good results from self injecting??

I apologise this is such a long post, I'm just at my wits end and tired of being passed around different doctors who don't treat me like a person, just a number!

73 Replies
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Hi Sofiihorrell I'm sorry I cannot help you with self injecting - there are others on here who can give you advice on that - but reading through your posts I think it is important to try and establish the cause of your B12/Folate deficiency.

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), 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.

Can you "see yourself" among any of the above people?

What is your diet like? Do you eat plenty of meat, fish eggs, dairy produce etc for B12 and lots of green vegetables for Folate?

It may be that you have an absorption problem with your digestion,

When you had your B12 loading doses were you also prescribed folic acid?

You could always ask for an MMA test. Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

You may also need to ask your doctor to test you for "Intrinsic Factor Antibodies" (IFA) Intrinsic Factor is essential to process the B12 in your food and without it you will have Pernicious Anaemia (P.A.)

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

(Perhaps wedgewood will be kind enough to help with your self injecting as I know she does it)

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Hi Clive. Thankyou for replying! My diet is varied I eat a well-balanced diet. My grandmother on my dads side, her daughter (my aunt) and her son (my cousin) all receive B12 injections. I think it's genetic! The doctor ran a blood test for Coeliac Disease which came back negative. There is a history of type 1 and type 2 diabetes on my dads side but I'm sure I've been tested for this because of the genetic risk! I asked the doctor about going on daily tablets because it would be a constant supply of B12 even if in small amounts and she said it would not be suitable because i cannot absorb it naturally, hence the injections! I'm really banging my head against a wall because I don't feel any doctors are listening to me!! The doctor found my folic acid was low at the time of B12 diagnosis and when asked if I would take tablets for it she simply said B12 and folic acid usually fall and rise together so the injections should bring it up. Then told me not to get pregnant because its so low!

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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's quite likely (whatever your doctor said) that you are still folate deficient. Personally I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember and I get my B12 injections of cyanocobamalin every three weeks. Folic acid can be bought cheaply over the counter at your local pharmacy or supermarket.

Does your GP know the family B12 history?

My heart goes out to you over your struggle with your doctor.

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I've had muscle weakness since I was a child. Saw a physiotherapist who said my muscle weakness was due to me having a huge growth spurt and my bones growing too quickly for my muscles to keep up? I've had pains in my joints and leg muscles since I can remember and because I'm tall (5'10") the doctors have always put it down to growing pain! I had depression as I went through puberty and I'm fine now but it could all be linked! I get pins and needles in my feet especially if I'm sat down!

I might start folic acid tablets! Yeah the doctor knows about my family history of B12 and so has dismissed all other possible avenues of why I could be deficient. Thankyou!

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Well I hope you find some answers - you are an intelligent young lady.

I was 17 when I had gastric surgery in 1959 for a stomach ulcer which burst due to stressful home life and probably poor diet.

At the time I stood six feet four and weighed 13 stones 4 pounds of muscle and bone.

It was another 13 years before I got my diagnosis of Pernicious Anaemia in 1972 but I'm still "clivealive" and over 75.

Goodnight.

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Thankyou Clive!

It's so sad that it takes so long for these conditions to be found, especially considering the long term effects of B12 deficiency can be dangerous!

All the best!

Goodnight :)

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Hi Sofi, I sympathise so much with your story, passed for pillar to post is the worst and I swear if one more gp tries to perscribe me anti depressants I may throw a box in their direction!

My advice is trust your gut, don’t be afraid to insist on further testing and go armed with guidelines printed out and a supportive friend or relative where possible. It’s YOUR body and you have the right to a cohesive diagnosis and treatment plan regardless of how many tests that takes.

I’m also in the process of beginning SI so any tips I’ll gladly share once I’ve had my training from my nurse friend next week.

In the meantime everyone on the forum has been so helpful and there’s a wealth of knowledge out there which I’m sure they’ll share!

Wishing you luck with it all, L

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I swear they think that we are all just depressed and thats why we have vitamin deficiencies lol! I remember sobbing in the doctors and saying I'd be the first to ask for help if I'm depressed! I refused anti-depressants at first and she said just try swimming or the gym! I went to the gym and slept the whole of the next day! She kept insisting that you don't have to have a reason to be depressed it can simply be a chemical imbalance. I told her I wake up and physically cannot get out of bed even though I really want to, i dont stay in bed because I feel im not worthy or deserving of things or because I can't cope with life events! Trying to explain things is like getting blood out of a stone honestly! Did you speak to your GP about self injecting? I don't think mine would be too happy!

Thankyou! All the best!

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One of my first symptoms was a sharp drop in my moods and a lot of crying which the b12 injections cleared up within a matter of weeks. Is such a common symptom it’s just a shame that it’s the one that the gp would rather treat in isolation! It’s one of the first things to reimerge before the neuro symptoms return when I’m running low too it seems.

I’ve not discussed the SIs with my gp, I doubt he would approve so I thought I’d just cross that bridge later if needed!

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Yeah I've noticed in the last two or three weeks that I've become SO irritable! Not so bad with mood swings this time just feel like I've got PMT constantly! It's not fair for my family who have to deal with it or me knowing that simply having the injection which takes 30 seconds and costs pennies can spare me and my loved ones the hassle!!

My GP would not approve either, I see different GPs every time i make an appointment so it is difficult to get a firm opinion!

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I was exactly the same! I managed to get a lovely nurse whose fought my corner and got my alternative day injections for the past month but my gp is keen for this to stop so I’ve prepped myself for the SI route.

The injections have really helped level my moods though, though I’ve missed a few injections lately and have been back to square one.

I’m forever seeing locum doctors, it’s such a shame how fractured the system is. I’m pretty sure the receptionist thinks I have munchausen's

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Where are you getting your B12 and disposables like needles and syringes from for SI? I'm honestly desperate to feel normal again! I know I've been to the doctors so many times they probably roll their eyes at the sight of me!

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Hi I can’t believe how much this sounds like me!! I am too 19 and was diagnosed with b12 defiency last year in October, I initially went the doctors because for months on end I felt so ill, got headaches almost everyday and was so tired all the time. The doctors gave me a full blood count and it came back that my b12 was just 73. I had my loading doses and remember like you kept asking when would I feel better as the injections made no difference for me until months later. Have you been tested for pernicious anemia? I have and that came back negative no one can understand why I have this defiency. I really hope you can get it sorted

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And I was also diagnosed with depression, they gave me 10mg citalopram, it worked to start with and then stopped working

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We're so similar! I'm sure they tested me for pernicious anaemia but maybe not because I've only had one blood test since my loading doses and they might have said then? It's so so frustrating because we're so young and shouldn't feel this way! No one should but especially as a young adult with so many avenues of life to pursue I feel I'm unable to because my body is not working!! I haven't found the citalopram to be helpful at all, mainly because I know I'm not depressed and my symptoms are purely down to exhaustion! xx

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Citalopram 10mg is a dose for starting children on; it's not a dose for adults, so how your GPs thought there would be any benefit from it is a mystery. Unless you're super-sensitive to medications, it's utterly pointless taking a sub-clinical dose. Even if you were depressed, a tiny dose wouldn't have helped!

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spacey1 - citalopram is used to treat a large number of conditions and starting dose varies - this article list 10mg as the starting dose for GAD and a number of other conditions.

reference.medscape.com/drug...

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That's true, but for an adult, a therapeutic dose for depression starts at 20mg, not 10. Both of these people were prescribed it for depression.

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I have to say, I know I'm not depressed, she asked if I was crying and emotional and I said yes because I'm so exhausted and can't continue with having to take time off college! She then told me "its depression, the first step is admitting you have a problem!" I burst into tears because she's treating the symptoms of a deficiency as a whole new disorder and not recognising its the deficiency! I left there feeling so defeated and that nobody was ever going to listen to me! It was only when I went back because I was unable to stay awake for more than 6 hours without a nap that she said prove me wrong and take citalopram! Needless to say, they have not worked!

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Can imagine how frustrating that is. My own GP was convinced that 'the sighs' were a breathing problem. I agreed to a chest x-ray, which was - of course - completely clear, but then the GP sent me to a Respiratory Consultant. I cancelled the appt. Feels utterly mad that they will spend ridiculous amounts investigating what's not a problem, and won't spend the pennies needed for more frequent B12!

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I have felt no difference from the Citalopram at all, it's just a waste of NHS money and putting more drugs into my system!

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I'm sorry you're having such a difficult time. I know you told Clive that you had blood tests for celiac which came back negative, but the fact that you are low on so many different vitamins makes me think there might be something more going on. Sometimes those tests give false negatives. Have you had an endoscopy? I imagine your doctor hasn't offered it because the celiac test was negative, but it seems like there should be an explanation for why you're not absorbing nutrients. In my opinion, you should definitely pin your doctor down to a diagnosis. It's their job to figure out what's wrong. The fact that they don't know means that they need to keep looking.

You could try high dose B12 tablets, but they probably won't do much for you. Some people find benefit from skin patches, nasal sprays, or sublingual (dissolve under the tongue) lozenges. You could try some of those to see if they help inbetween the three monthly injections.

The other piece of advice I want to offer is this; be sure to get print outs of your labwork with the reference ranges included. You are entitled to your records (although you may be asked to pay a charge for the print outs). Having your own copy of your test results makes it easier to get a full picture of what has been checked and what hasn't. You'll need to become your own advocate for your health. Also, it can be really helpful to take a friend or family member with you to appointments. The extra set of ears can help pick up on things said that you might have missed. If you can bring along a family member who also has B12 deficiency, they can back you up when a doctor tries to tell you that your symptoms aren't related to a lack of B12.

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That's what I've been thinking. I asked the doctor to investigate other causes, and she said sometimes the body can't absorb things and it's probably genetic. I was so sure I had Coeliac's - i was the one who brought it up! I had most of the symptoms and one of them was low iron, low folic acid and low B12! It came back negative and I just felt I was back at square one!

I've spoken to my doctor about tablets but she said no because I can't absorb the vitamin through my digestive system so I have to stick with the injections. She's now referred me back to a specialist (I have no idea which one) and we'll go from there.

I think I'm going to start self-injecting to be honest, I'm taking my treatment into my own hands, I've been messed around for months, and had so many blood tests over the years and it's always come back as my iron deficiencies! I even had a blood test at the hospital and they didn't think to check for my B12, despite having heart palpitations, headaches and extreme fatigue. They simply said my iron count was 4 and to take iron supplements!

I'm definitely going to request my lab work from now on, might even ask for all my results from the past two years and do some digging of my own!! My mum has come with me before and the doctor seems to shut us both down!

Thankyou so much for the advice!!

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Hi Sofiihorrell

Yes, I self-inject. My GP refused to agree that I was B12 deficient, in spite of blood test results showing below-range B12, above-range Folate, whole list of symptoms. In the end, I decided it was 'my' body that was heading for irreversible neurological symptoms and feeling total 'rubbish', so started B12 injections.

After a couple of months on alternate day injections and I was feeling so much better, including improving mood, more energy and therefore achieving more, etc I made an appt to see my GP and, after he could see I was very much improved, I told him I had been injecting B12. His eyes nearly popped out of his head ;) He couldn't believe I would do such a thing, I suspect. Anyway, he's accepted I self-inject and accepts my general health and mood has improved considerably, so that's good enough for me. I felt my GP should be aware that I was self-injecting although it shouldn't be a problem re prescribed meds, as far as I know.

I suggest you do self-inject but I feel your GP should be aware, at some stage, especially when it's really evident you are feeling so much better. It could be an 'undercover' way to begin educating our Medical professionals ;)

If you search these forums, you will find recommendations as to where to buy B12 (Hydrocobolamin) from, where and what needles and syringes to get. YouTube have some very good clips regarding how to self-inject.

Personally, I prefer to inject via subcutaneous route, having warmed the ampoule contents to body temperature, using a fine needle (same size as diabetics generally use) If you check out my previous posts, you will find a very recent one regarding getting supplies and costs to do that. This is one with details re what to buy - healthunlocked.com/pasoc/po...

In that same thread, you will find a link to a German website where many on here, including myself, orders from.

Wishing you the best of luck :)

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So you started of injecting every other day? How often do you self inject now? It's like GPs are so reluctant to give you B12 it's as if they have to produce it and inject it themselves! Thankyou for the links they're so helpful! :D

All the best :)

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I have been self-injecting for 2 1/2 years and it has changed my life ! Can only recommend it . I was messed around also . I buy in bulk (100of everything) and that means an injection only costs £ 1.00

I use a German online pharmacy

versandapo.de in English

Google all that . And you get to the English site If you accidentally get on the German site scroll and find the Union Jack 🇬🇧 and click on it . You need to register before your first purchase . Search for Hydroxocobalamin . A drop down list appears . Click on Hydroxocobalamin acetat , and the choice appears . I use Rotexmedica 1mg x 1ml ampoules . I buy 100 as this is the most economical . About €53.00 I think plus €9.00 courier . You can buy 10 ampules , but courier cost is the same . Takes about 3-4 working days . You can pay with a card or PayPal . Very professional and reliable pharmacy .

All else I get from U.K. from —medisave.uk needles long 1 1/2 “ x 23 G to withdraw and

1” x 25 G to inject ( very fine needle )

2ml syringe and swabs

Also a yellow sharps box for needle disposal

( local chemist takes mine when full )

I inject IM into the middle outer third of my thigh ( look up videos on u tube ) some are good some not so .

You can also use sub -cutaneous , but I know nothing about that

I was very scared the first time . Now I don’t turn a hair . I inject weekly . You will find out for yourself what you need .

I find injecting totally painless . It’s saved my life , and it will yours . Remember B12 works with B9 -folate /folic acid , so just supplement with a 400 ug tablet (Amazon )

Best wishes 👍🍀

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I've just added all of that into my checkout basket I'm just waiting for payday tomorrow to buy it! I really hope it makes a difference! I would probably inject IM in my thigh. Do you find if you don't inject weekly your symptoms return? I will also order some folic acid!!

Thankyou so much! :)

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No , I don’t allow symptoms to return . It’s so awful that I inject well before that happens . One cannot overdose on B12 . What one doesn’t need is simply excreted In the urine .

All the very best

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Yeah I read you can't overdose even if you inject 10,000 times in one day! That's comforting at least!

Good luck :)

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I also self inject. I was tired of waiting for doctors to treat me before it was too late. I purchase vials and syringes along with sharps container at a pharmacy. I'm from Canada so I'm not sure where to suggest for you specifically but I would imagine it would be the same. To be honest there are a lot of videos on you tube. That's where the nurse from the clinic told me to go. You really can't mess it up too badly. (Thank goodness). The easiest place to self inject is the thigh or if you have someone to do it for you so you can alternate the area, especially if injecting often, is the gluteus and deltoid. Good luck!

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Thankyou so much! I work at a pharmacy here in Wales, UK and we never sell sharps or sharps bins here or else I would get my staff discount lol. I've looked at videos before and it does seem to be quite simple, hopefully won't mess it up too badly! Thankyou!!

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Hi,

Are you in UK? I'm asking because patterns of b12 treatment vary from country to country.

I am not medically trained.

"My grandmother on my dads side, her daughter (my aunt) and her son (my cousin) all receive B12 injections. I think it's genetic! "

"I'm sure they tested me for pernicious anaemia"

PA (pernicious anaemia) can run in families. Do any of your relatives have a PA diagnosis or diagnosis of other condition that affects B12 absorption?

Is your GP aware that it is possible to have Antibody Negative Pernicious Anaemia (see flowchart and BSH Cobalamin and Folate Guidelines links below)? This means a person can have a negative or normal range result for Intrinsic Factor Antibody test but still have PA.

PAS

I think it may be worth you or one of your relatives joining and talking to PAS (Pernicious Anaemia Society) soon.

PAS are based in Wales, UK but have members from around world. Sadly, it can take a long time for PA to be diagnosed. PAS can sometimes intervene by writing letters on behalf of PAS members and at very least can pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK can be useful source of info on helpful GPs.

pernicious-anaemia-society....

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

UK B12 documents

If you're in UK, I'd suggest reading all of these plus useful summary of mainly UK B12 documents in third pinned post.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and 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 with lots of case studies.

"went back to the doctor and begged for my B12 early she said no it's to stay to three monthly cycles"

If you're in UK, GP should know that people with B12 deficiency with neuro symptoms (see symptoms lists above) eg tingling, pins and needles, tremors, memory problems, balance issues, tinnitus plus other possible neuro symptoms should be on the following treatment pattern.

A b12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months.

See BNF link and BSH Cobalamin and Folate Guidelines for details of UK B12 treatment.

The treatment pattern you are on eg 6 loading jabs followed by a jab every 3 months reads like the standard Uk b12 treatment pattern and may not be enough for someone who has neuro symptoms.

Funny back sensations, severe brain fog, headaches, memory problems I think would usually be considered as neurological symptoms.

I hope the fact you have "Funny back sensations" is taken seriously by your GP. Untreated or under treated B12 deficiency can lead to further deterioration including spinal problems.

Do you have anyone supportive who can go with you to appointments? Even better if they have read up about B12 deficiency.

Neurological Consequences of B12 Deficiency

pernicious-anaemia-society....

Letters to GP about Under treatment of B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

Advice from haematologist

NICE CKS link above, mentions that in UK, GPs should seek advice from a haematologist for people with b12 deficiency with neuro symptoms. Has your GP contacted a haematologist? Have you been referred to a haematologist?

Neurologist

Have you been referred to a neurologist?

UK B12 Blogs

There may be relevant stories about young adults/teenagers/students on these blogs.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

I know you are contemplating self treatment but it may be worth having another go at getting more B12 from GP.

My preference is to put info eg symptoms, family medical history, relevant extracts from B12 articles/documents in a brief , polite letter to GPs , In UK , my understanding is that letters to GPs are filed with a person's medical notes so are a record of issues raised. See letter writing link above.

Do you get copies of all your blood test results/medical notes?

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

It can be very interesting to see what has been written. I learnt to always get copies of test results after being told everything was normal and then finding abnormal and borderline results on copies.

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

"doctor ran a blood test for Coeliac Disease which came back negative"

Which tests for Coeliac disease did you have?

Coeliac Disease

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease. Did you have both of the above tests?

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac UK

coeliac.org.uk/coeliac-dise...

Coeliac UK Helpline 0333 332 2033

My experience and sadly that of many forum members is that B12 deficiency is not always as well-understood as it could be by some doctors, so I think it's worth doing some b12 homework.

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Thankyou so much for the detailed reply and all of the links I will definitely be reading them today. I'm from Wales so I don't know how that would affect things. I am almost sure that my Gran has PA, she is away on holiday now so I can't ask til she gets home!

My GP has referred me to a specialist, when asked which one she said she was not sure and would have to do some research! I just feel like she doesn't know what she is on about! She asked if I had stomach pain day to day and I said no, she felt my stomach and it hurt in one area but she was pressing really hard, and she sent me for an ultrasound to test for gallstones! When I looked at the symptoms of gallstones, I had none!! As expected, the ultrasound came back normal.

You've given me so much information, I can't thank you enough!!!!

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Hi again,

PAS office is in Bridgend. If you're a PAS member you may be able to arrange to visit office.

PAS support groups in Wales

There is a PAS support group in South Wales. If you join PAS, you can access contact details for this group. If you're close to English border, you may be in reach of Gloucestershire group.

pernicious-anaemia-society....

Links about young adults/teenagers/students with b12 deficiency/PA. Some of these links may have upsetting stories.

pernicious-anaemia-society.... page 2 for link to article on Juvenile PA

pernicious-anaemia-society....

martynhooper.com/2013/10/02...

martynhooper.com/2015/02/10...

martynhooper.com/2009/08/03...

martynhooper.com/2017/04/18...

b12deficiency.info/children...

"GP has referred me to a specialist"

If you have gut symptoms, might be worth asking for referral to gastro-intestinal specialist (gastroenterologist).They might be able to pick up signs of gut damage caused by PA, Coeliac, H Pylori infection, which can all lead to B12 deficiency.

You have the right to ask for referrals to a specialist but GP does not have to agree.

I'd also suggest asking PAS if you join, for ideas on which specialists to be referred to. I will warn you that lack of understanding of b12 deficiency exists in many medical specialisms so strongly suggest doing B12 homework whichever specialist you see.

As I said above, UK guidelines suggest doctors seek advice from haematologist for patients symptomatic for b12 deficiency with neuro symptoms.

The only NHS doctor I saw who considered B12 deficiency as a real possibility was a neurologist but I saw several other neuros who despite me having typical symptoms did not consider it.

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My husband now self injects after years of fighting and paying to get a specialists opinion but the other thing that's really helped him is to have a paleo /gluten free diet!! Hard work till you get used to it but so so worth it. He also tested negative for celiac but it's had a dramatic impact together with regular injections.

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I'm tempted to cut out gluten from my diet and see if that helps. Just after the negative result I felt so deflated as I thought it was an answer!

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"because the coeliac test was negative"

"I'm tempted to cut out gluten from my diet"

If they only did one test for Coeliac disease (probably tTG IgA) then my feeling is that they cannot be sure you are not Coeliac. NICE guidelines for Coeliac disease (link in one of my posts above) recommend ordering a Total IgA test as well as tTG IgA.

People who are IgA deficient will not make the antibodies that the tTG IgA test checks for. Total IgA test should show which patients are IgA deficient then these patients can be offered other tests for Coeliac disease.

Probably worth getting copies of all your blood tests.

If you cut out gluten then getting a diagnosis of Coeliac disease can be more difficult. Contact Coeliac UK for more info.

Diagnosis process for Coeliac disease

coeliac.org.uk/coeliac-dise...

Do you have any blood relatives with Coeliac disease? A history of auto-immune disease in family can increase a person's chances of developing an auto-immune disease. PA and Coeliac disease are auto-immune conditions.

Thyroid Disease

"I've had my thyroid tested and it all came back as normal"

The symptoms of thyroid disease can overlap with those of b12 deficiency. Which thyroid tests have you had? In UK, GPs sometimes only order TSH test, which won't give a full picture of thyroid function.

Might be worth putting thyroid results on Thyroid UK forum on HU.

Thyroid testing

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

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My husband felt the same but for him he was utterly desperate and a t the end of his rope. What's really worrying is that my nine year old is showing a lot of symptoms he's also now been tested but again came back negative but because of the impact it's had for my husband were currently changing him over to gluten free also. We've also found if he eats potatoes he gets terribly sleepy etc so it's worth being strict for a month or so (follow paleo) and than slowly reintroduce foods one by one to see if they have an effect. He's also stopped drinking alcohol completely to see if that helps. It's not a lot of fun but the benefits have outweighed it so far....hope it works for you too..

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I feel very sorry for you and think you are brilliant to have such a rational attitude. Good for you to want to get it sorted and get on!

wedgewood s post gives you the information you need for SI and a while ago I put together a post which I try to keep updated with information, including sources of supplies, which you can see by looking up my profile by double clicking on my name and scrolling down to see my post, "My Experiences".

Just be aware - I'm sure you are - that for the extra B12 to work and repair the damage sustained by the deficiency your body needs a lot of resources. You may benefit from a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron - some of which I know you are already taking but worth taking account of.

Good luck and keep in touch!

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I will order some multivitamins, I'm already taking vitamin D and iron to keep my levels up! Everybody seems to be saying take folate/folic acid along side the injections so I will definitely order some of those!

Thankyou for your advice it's much appreciated!

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Have you been advised to take K2 alongside your D3? It can be better for you.

I know you are suffering but you are very bright and if you can it is well worth Googling the vitamins and minerals to see their interactions, deficiency and excess symptoms and how you can get them from your diet where possible.

Wikipedia is mostly a trustworthy source of information. Be aware that some websites can be less so.

Welcome to a new start towards the rest of your life!

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No just the D3.

I'm going to research into this properly and treat myself from now on. I shouldn't have to do this, I'm 19 and in full-time college, my education research should come first, not researching into how to function like a normal teenager!

Thankyou!!

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Tell me about it!!

But I wish I'd had your opportunity 25 years ago - better that you can, even if you shouldn't have to!

Hopefully with the right treatment now you will have a full life ahead of you and you won't have to suffer as many of us have until we we could find groups like this.

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I would definitely speak to doctor first I have injections at three month intervals and at present are going well but I was also taking 5mg of folic acid after loading and continue to take over the counter folic acid as without it brain fog returns and I get dizzy . Now I’m come to my main reason for posting my nan who is in her 80s had the exact same reading of b12 as you got prescribed folic acid along with shots but thought it was iron so didn’t take told her to as I knew from experience and here you need to , she was still feeling rubbish! Wasn’t until doctor did another test and told her it had dropped from 2 to 1 and she must take that she has been and is feeling better ! Would really give it a try . Plus I always have a carton or two of coconut water after jab , have to hold my nose but feel this helps too . Sorry for long post and hope you feel better soon . You’re so young and should be living life not getting through it x

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I think I need to speak to the doctor about going on folic acid then. It's the brain fog I cannot cope with. In the last 24 hours I've forgotten I've twice put the toaster on and it's only when I smell it burning I remember! I've forgotten my PIN at a cashpoint, I mis-spell simple words when I'm handwriting, thank goodness for autocorrect! But these problems haven't always been there - I know it's the B12.

Does the coconut water really work? Might have to try that!

Thankyou xx

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Coconut water is a good source of potassium, so are bananas.

People sometimes experience a drop in potassium levels (hypokalaemia) when they first start B12 treatment.

b12deficiency.info/b12-trea...

JMN2017 has a word of warning about dangers of too high or too low potassium levels on post below.

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I am so sad the you’ve had such appalling treatment from my profession. I am now retired but if such a story were describing my treatment of a patient I would be very fearful of a solicitor’s letter advising me that I was being sued for medical negligence. I would also be terrified of the letter from the GMC regarding investigation of my competence to practice.

This blog is invaluable and the PA Society is to be applauded for raising the issue. However, to my mind this is all a matter of fiddling while Rome burns.

Of course you can manage your own treatment. It sounds as if you are more than committed and intelligent enough to deal with self treatment. However, this begs the question that many sufferers lack the ability to self diagnose and self treat. B 12 deficiency and the resultant tiredness and brain fogging would definitely impair your ability to cope.

I firmly believe that legal action should be instigated against individual doctors and possibly the NHS for blatantly disregarding all of the scientific and medical evidence. I believe an individual or class action is the only way to prevent such gross dereliction in the legal duty of care towards patients. I believe the time for such action is NOW.

I know that many on this blog will disagree but desperate diseases need desperate remedies. People are suffering. Their quality of life is impaired. Their ability to earn a living is impaired. Worst case scenario is that they will develop irreversible symptoms, as did my grandmother who was paralysed as a result of Sub acute combined degeneration of the spinal cord - a late and direct consequence of B12 deficiency.

I do not doubt the knowledge of the many very well informed contributors to this blog or the PA society, but it is not the way to advance the course. Unless and until the medical profession is held to account on this matter people will continue to suffer symptoms of B12 deficiency and the anxiety and depression that can so easily flow from that.

We are talking about a long recognised medical condition with long established treatment that is very cheap and entirely safe. Compared to the individual and national cost of failing to treat this is a national scandal.

I self treat but with my own and my husband’s medical qualification that is my own best option. However, I feel anxious about doing so, even though I would probably recognise other medical and unrelated issues without attributing everything toB12 deficiency.

In my opinion it’s time for the gloves to come off and the battle to begin NOW.

I apologise for my long reply but I feel very passionately about this issue and the need for urgent action.

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I said to my mum I want to complain about the doctor who told me I had depression, simply because I was crying! She kept saying you don't have to have a reason to be depressed, it can be a chemical imbalance. My argument to her was I wake up, still as exhausted as the night before, unable to get out of bed sometimes, NOT because I don't feel I'm worthy of living, or because I don't deserve things in life, but because I am simply too fatigued to move my body! The trademark symptom of depression is the inability to enjoy daily activities and loss of interest in doing so! Neither of which I have, I get so emotional because I feel like my body cannot do those things, yet my mind is desperate to! It's like a vicious circle with my GP and nobody seems to understand. I might be a number to them but I am a human being, I'm sure if they had the symptoms that B12 deficient individuals had they would be injecting constantly!

Thankyou for your long reply, I really appreciate it and it is making me more adamant in my decision to write a complaint to the GMC.

All the best ! x

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Perhaps you’re the person that could make all the difference. I greatly admire your resolve and determination.

I am definitely not depressed but was so fatigued after getting my groceries that I would sit down and burst into tears. I am full of Joie de vivre and hate límiting my activities because of a genetic issue with B 12 absorption. Five generations of my family are or have been affected and still my GP refuses to acknowledge the problem. Most of my family have had shocking treatment. Most of them depend on me for information on diagnosis and treatment. They are lucky but most people cannot access the support and advice they need.

It is possible to pursue a no win no fee legal action, but my belief is that the PA Society should initiate and fund a class action or alternatively support an individual in fighting a case.

Unless and until there is a major change in the way this deficiency is handled there will be no progress and stories like yours will be repeated over and over again with all the personal suffering and distress involved.

Good luck in your fight for effective treatment for yourself.

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Hi again,

Fits of crying can occur in patients with b12 deficiency. In my case GPs said my symptoms were due to depression and I would say I'm depressed because the physical symptoms including extreme tiredness mean I cannot do the things I want to do.

PAS can support families and carers of people with PA as well as sufferers

pernicious-anaemia-society....

PAS website has a section for health professionals. Your GP may be interested in fact that health professionals can join PAS for free, as associate members.

pernicious-anaemia-society....

Your local MP may be interested if you are not getting treatment you are entitled to.

parliament.uk/mps-lords-and...

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Sofi

If I was in your position I would not mess about trying to get sense out of a doctor that plainly does not fully understand what he/she is doing. With a B12 count of 92 you are in clear and present danger of permanent neurological damage. Age does not come into it. My wife has a genetically handed-down absorption problem identical to you. She lost all her hair - even eyelashes, brain fog, itching, indecision, memory lapses and extreme exhaustion. She spent days on the sofa with her eyes closed. After some VERY rough treatment from our GP who refused to treat to symptoms, we started a regime of self-injecting 1000mg Methylcobolamin every month. Her problems resolved - (but she never got her hair back).

Given your very low B12 levels I guess you will have to take a vigorous course of B12. (There is advice alsewhere on this site on loading doses) You cannot overdose so in your position I would err on the side of too much rather than too little. Dont forget to keep your folate consumption well up.

With respect to needles and sharps bin - you can ge these on the internet no problem. We get ours from E Bay. You are well-lucky to have a nurse as a mother. Supplies of injectable B12 are trickier. Methylcoblamin is restricted in the UK (for no good reason that I can divine) to prescription. If you go to b12d.org you may be able to get a supply. This is a charity that will prescribe if you give them the information that you have set out above. They do not charge, but you would be expected to make a donation to the value of the supplies that they send you.

September is not far away and you need to resolve this before your 1st year. You do not have time to battle it out with a doctor that does not understand the issue - and probably cannot be persuaded to set aside NICE guidlines. I graduated in 2011 and know that I would not have had a hope in Hell of coping with my 1st year if I was in your current condition. I suggest that prompt executive action is called for :-) Best of luck.

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Hi Johnathan. Thanks for replying :)

I've also suffered with hair loss, not to the degree your wife has, but I have several small bald patches on my head and my hair just seems to come out in clumps sometimes! I suffer from eczema so always put the itching if due to my B12 down to that! Is MCB stronger than HCB?

I'm desperate to get myself sorted before September but only have two more injections before then. How am I supposed to revise for exams and complete assignments if I'm unable to stay awake! My fatigue isn't extreme at the moment but I know in the next two weeks I'm going to plummet!

I hope your wife is on the road to recovery now! All the best x

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Hydroxo is the dietary form of B12. If you have problems with your methylation cycle that could possibly be a problem. Methyl is the form the body uses and Hydroxo needs to be converted by your body into Methyl. There is some discussion as to whether the Methyl form has a longer half-life in the blood-stream and so gives a longer opportunity for your liver to absorb it - but the literature on this is not clear. More research needs to be done. Hydroxo is easier to get. The success we have had with my wife was using Methyl - but I am not decrying Hydroxo. If you are losing hair and are tired you also need your thyroid checked. B12 deficiency and low thyroid often go hand in hand. I presume your GP has checked this and it is ok. If he/she has not - given your symptoms - I would suggest that it is time to change doctor. As September is a hard back-end date for resolution, you cannot afford the time to try to make a silk purse out of a medical sows ear. My fingers are crossed for you.

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Just to add that psoriasis is an auto-immune condition that is quite common in people with PA. Has psoriasis been excluded as a possible diagnosis for your skin/scalp problems?

In the end when I had exhausted all possibilities of getting NHS treatment, I chose to self treat.

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Hi Sofiihorrell,

I can't add to all the wonderful advice you've received but just wanted to wish you all the best with your recovery. As deniseinmilden mentioned, you need to take your cofactors as they are referred to in these sites and groups.

Potassium is very important as your levels will be used up very quickly so you'll need lots of potassium rich foods and drink. Coconut water is a good source.

Low potassium can cause more weakness and other symptoms so it's difficult to know what is low b12 or low potassium related.

Epsom salts can help muscle aches but some find that this form of magnesium is too much on the body. Magnesium glycinate in powder form is usually more tolerated.

Good luck.

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Thankyou so much for the response and good wishes. I'm going to buy vitamins and minerals galore haha! I'll literally do anything now just to feel normal again! Thankyou for the advice!!

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A word of warning re Potassium levels.

Please know your current potassium levels before supplementing or taking potassium-rich foods/drinks. Your GP might have tested Potassium with regular blood testing. It's in the 'electrolytes' category so, when "U&E's" are requested, potassium will be included in the "E"s

Potassium too high or too low can be DANGEROUS ie cardiac arrest, cardiac arythmias etc so very serious issue

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Absolutely, likewise you don't want to be taking too much iron as we know that can be harmful too.

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a) it is possible to maintain B12 levels in some people by using high dose oral because about 1% is absorbed outside the ileum - however, the amount absorbed is going to be really small and not very effective in getting enough in to you to correct the likely damage done by a deficiency as significant as yours.

b) don't think your GP really understands B12 and folate if they think that injections is going to correct your folate levels. B12 levels are generally quite stable in someone who doesn't have an absorption problem because they are regulated by releasing stores from the liver. Folate levels are much more responsive to daily intake as it isn't stored in any significant quantities in the body.

It is possible for B12 levels to temporarily fall when you start treatment with B12 because your body starts using more folate as processes that weren't running start running again ... but mainly because it may be using extra amounts of folate with B12 to repair damaged systems.

Some countries fortify some foods with folate which makes folate deficiency unusual.

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I'm going to start taking vitamins and minerals in every single thing that aids B12 absorption, as well as for my other deficiencies! Thankyou for the advice!

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You poor girl! I had the same problem with a doctor not taking my pernicious anemia seriously. He said that I was within normal levels even though I was at the very very low end. I was having neurological symptoms of having difficulty with my speech not being able to physically write with my hand, it was horrible. I’m top of that, i was also having migraines. I finally went to the nurse practitioner that Acknowledged my B12 was low. She would allow me to get injections in the office for the time I saw her. Injections were not convenient for me so I found Some b12 patches online. They cost quite a bit but it was so worth it in a really saved me. I really believe what you need to look into is leaky gut syndrome. You are having a vitamin absorption problem and you need to get to the root of it. I had to go through a total diet change with no dairy, and try to identify sensativites to foods. Also i took colostrum supplements which helped heal my stomach lining. It was a long road of healing my stomach lining but it has been so worth it. Even now I still have problems with my doctor wanting to test my B 12 levels. They really don’t seem that it’s very important when in the early 1900s people actually died because pernicious anemia. You may need to find a more naturopathic doctor, they will listen. Again they cost more and insurance doesn’t always cover it, but it will help you live a better quality of life. I’ll keep you in my prayers.

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I feel like because the coeliac test was negative,the doctor is reluctant to try other tests that indicate a vitamin absorption problem. How long have you been taking the colostrum supplements? I think I'm going to be on 25 tablets a day in order to function properly in a minute lol! I'm thinking about changing GP surgeries and getting a new opinion from somebody else. Hopefully the specialist can figure out something, I just want answers and to feel normal again!

Thankyou for the kind wishes, I hope you are well x

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GPs tend to use a specific questionnaire that was designed by pharmaceutical companies to diagnose depression/anxiety. If they stepped back they would realise that it is actually biased towards obtaining a diagnosis of depression rather than a balanced and objective test but unfortunately it has become rather engrained. One step change in completely losing my GP was being given the test and realising that anyone with PA was going to score high on it regardless of whether they actually had depression as a symptom - the same is also true for other conditions such as thyroid. There is a heavy emphasis on particular symptoms which may or may not be down to depression - such as exhaustion, crying etc.

The really sad thing is that depression isn't really a diagnosis at all - it is a label for a number of symptoms which could have a variety of causes and hence will respond to different treatments depending on the cause - but the mantra seems to have become focused on the label and often on a very narrow range of causes and treatments.

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The only questions the GP asked me were "are you crying" and "are you sleeping a lot?". She immediately jumped on depression and belittled me to the point I was questioning my own body and how I actually felt. I've had my thyroid tested and it all came back as normal, but I've requested the last two years of my lab results from my GP and I'm going to do some digging!

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Thyroid problems is another disease that GPs seem to be failing on. In the UK, the TSH range is set so much higher than other countries - often around 5 compared to 2.5 in countries such as Germany, Denmark and USA. If TSH in range, labs won't do any other tests but the patient need a thyroid panel to gain a full picture on how their thyroid is functioning.

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I've definitely had a very similar experience to you! however I've been on and off depression & anxiety tablets since I was 14 (Now 24) I decided 2yrs ago that I didn't want to take tablets any more, mostly because I'd forget to take them - which I put down to the medication. I was always forgetting things and I'd get upset and frustrated by it, I couldn't understand why I was also tired and mostly lacked motivation as well.

My b12 journey has been appalling from my diagnosis (or lack of). I'm always being told various different things from my GP surgery and recently they have ran every kind of blood test and it all came back fine asides from low b12! I do have injections every 3/5months.

It's really helped me finding this forum because I'm debating self injecting.

My folate/folic acid levels vary - so I stopped taking those recently as the GP said it was fine. and I should be taking Vit D (when I remember)

I find it so hard, even setting a reminder on my phone - I will still forget.

I swear my GP thinks I'm a hypochondriac!

I'm torn between going back to the GP and asking to see a specialist or starting self injecting. Having a read of other experiences and from my own, GP's seem to have a huge lack of understanding.

It's definitely something to think about/look into and will be interesting to see and find out how your journey comes along. I do hope you can find something that works for you.

All the best!

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I struggled with my GP for a long time after I had my diagnosis ( had to go to a private GP , as my NHS GP wasn’t interested ,and just fobbed me off ) Anhhow I decided to SI as I didn’t want to deteriorate further .Best thing I ever did .

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My word , you have had a marvellous response ! All the best to you !

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Just a quick update!!

Thankyou ALL so so so much for the positive comments and feedback! I’ve decided to purchase B12 (hydro) and all the necessary needles and accessories in order to begin self injections!

My final question is how often should I inject? I’ll be IM injecting also.

I’m due for my NHS B12 in May and I’m debating whether to tell my doctor I’m self injecting and to stop the NHS ones! I have an appointment this coming week with my GP to discuss coming off the Citalopram!

Thankyou all again! You’ve all been so important in making this decision, onwards and upwards! Can’t wait to have energy constantly!

Sof x

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That's fantastic, it's so good to be able to take back control of your health. The BNF guidelines state every other day with neuro symptoms but others on the "New Beginnings" b12d Facebook page SI every day with symptoms as severe as yours so maybe start with every other day but if you have a particularly stressful day or feel generally unwell (on top of all your other symptoms!), you may need every day. Others also feel it helps to split the dose throughout the day but I don't want to bombard you with options!

I always feel that your surgery should know you're SI. Maybe you'll find it easier to decide when you see your GP this week.

Good luck 😀

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Thankyou for the advice! I’m going to start SI every other day, and see how I get on. How often should I inject once all my symptoms have gone? A few people have said once a week but others have said once a month! I might do every other day until I feel better, then every other week for a month or so and then wean myself to once a month if I feel okay on that!

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Brilliant, that all sounds like a good plan. I so hope that by the summer, you will be feeling much better Sof. It's difficult to say at this early stage how often you'll need your maintenance dose and of course we're all different but the main thing is, you are now armed with so much information from the wonderful people on here.

You'll have to keep us posted about the outcome of your referral. It would be good to get to the bottom of the cause. You may need private blood tests later down the line to fully check your thyroid but at least you're well on the way to a much better quality of life.

Good luck with your exams 😀

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US B-12 self-injector here. I got all my advice on self-injection from a pharmacist and then researched online to confirm. My doc prescribes the ampules and the pharmacy provides them. I also bought insulin needles and alcohol wipes there. You can buy insulin needles and fancy disposal boxes online. Where I live, I checked the landfill rules, and they're easy to follow. I use an empty laundry detergent bottle (thick, opaque plastic) clearly labeled "sharps". When it's 3/4 full, I will duct tape it closed, make sure it's still clearly labeled, and toss it in trash (not recycling!) for disposal. Check your local rules about medical waste.

To inject:

Skin prep: use water and soap, then alcohol wipe, to fully clean all skin near the injection site. Recommended site: outer upper thigh. Alternate sides every time you self-inject.

B-12 prep: remove cap from ampule and both caps from the needle. Pull the plunger to fill the syringe with air. Insert needle into ampule and inject all of the air. Pull back on the plunger to draw B-12. Mine is crazy hot pink colored.

Inject: hold needle perpendicular to injection site - straight up and down, not at a shallow angle. Insert and press plunger slowly. If it burns, stop - people tell me that's what it feels like if you hit a blood vessel. That hasn't happened to me yet. If you are making a blister as you self-inject, the needle is too shallow/isn't fully inserted.

Dispose: re-cap needle and dispose of it and ampule according to your local rules on medical waste disposal.

I watched some other people do it on YouTube to see it first.

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