What's your story?

[leahcim]

So im super interested to know how you guys/girls with B12 D and PA got diagnosed, what symptoms did you have? how did you get diagnosed? etc etc thought it would be good to share some stories on (hopefully) success on getting diagnoised or help at least.

[fbirder]

I was hospitalised with severe anaemia. This was thought to be caused by a GI bleed, buy colonoscopy and gastroscope showed nothing. My gastroenterologist ordered some blood tests, including B12. When that came back low my GP ordered an anti-gastric parietal cell antibody test, which came back positive, indicating PA.

I'm now negotiating a treatment regimen.

[Paulaw22]

I was diagnosed with PA after my daughter fainted at work. She was a student nurse and worked at a university hospital that has been involve in studies regarding PA!

They told her to see her GP and ask him to test her blood for PA. Our GP found her to have very low readings and ask if anyone in the family had it because her type was hereditary. She said no but told him I was always suffering from anaemia in the past and as I had just had a total hysterectomy and the hospital kept saying there was a problem with my blood tests but couldn't find out what it was, he tested right away and my readings were so low they said they didn't know how I was still standing up!

I have regular injections but have a lot of health issues due to not being diagnosed. Hope this helps?

[Gambit62 Administrator]

I had a fall down the stairs at 1am on 3rd December 2012 and caught my ankle very badly in trainers at the bottom - causing a fracture so was hospitalised.

A day or so before my discharge the orthopaedic consultant came round with various students (teaching hospital) - just as he was about to move on his assistant pointed to something in my notes and he started going on about low b12 - first time I'd ever really heard of it outside the context of reading the blurb on a marmite jar. He then started asking me about my bowel movements and quizzed the students on what a B12 deficiency meant. I think one of them might have mentioned the possibility of osteoarthritis but mostly they didn't have a clue (and neither did I at that stage).

I was sent home with a set of loading shots and two follow up shots and a letter for my GP. I didn't and still don't have anaemia.

Loading shots weren't done properly because of christmas ... and follow up shots didn't make any difference. At no point had anyone done a thorough assessment to see if I had any neurological problems - which I most definitely did ... and some of them had kicked in after the operation - loss of feeling in the left foot which I think everyone dismissed as just being part of the operation and just temporary.

My recovery from the ankle was really difficult - mega depression and huge amounts of anxiety - with no energy - problems with co-ordination and huge amounts of pain in the legs.

When I rang up to arrange for a test a few months after my last maintenance shot I spoke to a locum who told me that there probably wasn't much point in having a test as my levels would be screwed by the maintenance shots and that really I now needed to have shots every 3 months - though he found most of his patients needed them more frequently than that so should come back when I felt I needed it.

I soldiered on for a few months- managed to get the frequency of maintenance shots to 2 months but was still really struggling. Loads of infections - muscle pain (back really bad), problems with balance, walking was extremely painful. I'd retreated into trainers as I couldn't cope with anything else and seeing a podiatrist hadn't done anything - told me my muscles were trapping my nerves and that was what was causing the problem. I told him I was on B12 and he said that he had a friend who was the same and just used to spend weeks sitting in a heap waiting for he next injection too tired to do anything.

Meantime I was reading up and finding out about B12 and decided to go back to the GP - this was about 5 days after a maintenance shot at which time I was full of cold, struggling with walking - and sitting - had to make sure that there was chair behind my buttocks ... GP told me that I was depressed and couldn't possibly be B12 because I was on treatment. Did their standard questionnaire on depression - which made me realise that someone with B12D was going to score high on it whatever the mood ... I apologised for wasting his time and after about 30 min left - he did do some neuro tests and I remember standing with my eyes closed trying to figure out how the hell to tell my feet to walk on the spot. Thought to myself that I was sorry he had wasted my time. I was really in despair ... and decided - having found out that B12 isn't toxic - to treat myself. I ordered some B12 phials on line, along with syringes ... and decided in the meantime that I would use the nasal spray I'd just got to help supplement as much as I wanted - so using 3-4 times the recommendation ....

Within a week I was feeling much better.

Within 3 weeks I was quite happy perched at the top of a ladder in the garden pruning my grape vine

3 months later I realised that the depression that had dogged me for years was gone

Before I started treating myself I was thinking about dropping my hours at work because I just couldn't cope - no energy at all and socialising was getting really difficult because I was having mild psychotic episodes around a lot of people. I've even increased my hours and moved to a much more responsible job.

Not sure that puts the medical profession in a good light. If the consultant's assistant hadn't been there to mention the B12 I'd probably have gone home with nothing and I'm pretty sure that I'd have succumbed to the anxiety and depression that built up afterwards and killed myself.

No skill, just pure luck ... not lease of which is having the nous (even with brain fog) to figure things out for myself and the financial means to do something about it all.

Makes me mad that there will be people out there who are having their lives ruined at vest and being killed at worst by apathy and ignorance.

[LadyNZ in reply to Gambit62]

Gambit62...Your circumstances are different, but in every way your story is the same as mine. Now trying self-injecting and unsure how often I should.

[Gambit62 Administrator in reply to LadyNZ]

You can't overdose on B12 so I would listen to your symptoms.

I think I'd be a pin cushion if I did all of my B12 by injection as I seem to get through a lot - mainly nasal spray and currently using 3 different formats of B12 - hydroxo, methyl and adenosyl as they all seem to treat different problems best. I also supplement B9 and B6 (keep that below 100mg a day as can cause nuero damage at higher doses)

[Catherine50 in reply to Gambit62]

On what a painful path you have had to travel. High five at your amazing progress and thank youfor sharing it Gambit xx

[Ana_conda in reply to Gambit62]

Quite a story. It must be frightening to contemplate where you would be today if someone didn't "accidentally" notice your B12 levels were low. Yikes!

[Gambit62 Administrator in reply to Ana_conda]

Think the more frightening thing was that it took over a year after that to figure out what was really going on and what treatment I needed - without any real support from the medical profession

[Nadpa]

I'm a 38 year old woman. My thyroid was tested in relation to not getting pregnant. The results came out with some abnormalities and I was referred to an endo. Waiting time four months. As I'm not getting any younger and still not pregnant I booked in with a private endo. I had in the meantime suffered a total collapse. A stress breakdown. Severe anxiety. And was in a terrible state when I saw the endo. I had recently lost weight and also half a year earlier been aneamic for which my GP subscribed me iron pills. My mother had Addison's. I didn't know what he checked me for. But when the results came back he had tested all sorts - including b12, homocysteine and anti gastro parietal cells. It was positive. B12 borderline low and homocysteine high. Based on that he diagnosed me with PA and a b12 deficiency. He also found I had Hashimotos - an autoimmune condition relating to the thyroid. But said to see if the thyroid itself would settle down spontaneously once the b12 got in balance.

[Catherine50]

I had been having a number of unexplained symptoms ... dizziness headaches aching limbs and shoulders foggy head blurred vision. This had been going on for 2-3 years I went to see gp regarding dizziness he did bloods which came bsck a day later to start loading doses of b12. I have been told my body can not store b12 and will need shots every 3 months for ever.

[hashiB12sjogrens]

I was already diagnosed with Hashimotos and being treated - but felt like the world was going at a different speed to me - SOOOOO sluggish. I would wake every morning feeling like hell - with no blood in my hands - as if I had been lying on them - but hand't. I once even lost all the blood in my hand while having my teeth checked at the dentist - think dentist thought i was mad! I used to get black 'floaters' across my vision - then I started to get numbness in my feet as well as my hands. One rememberable Saturday morning I got up as normal - and was asleep again by 11am. Upon telling a colleague about this on the Monday morning - he suggested I do some research myself! Best advice I ever had and best thing I ever did!

I joined a peripheral nuropoathy forum and came across the most amazing lady - Rose Anster I think her name was - who suggested I get B12 folate and ferritin tested - I asked my GP - told him why - and had the tests done! All were dropping off the bottom of the scale - so he then sent me for a Schilling test - which confirmed i don't absorb B12 - I started on B12 injections - and by the third I started to notice improvement. The rest is history!

My GP was actually great - and I am forever thankful to that colleague who suggested I do my own research. Hope useful x

[Gambit62 Administrator in reply to hashiB12sjogrens]

Really glad that there are good GPs and that you have one

[clivealive Forum Support]

Hi leahcim

I'm a 74 year old male

When I was 17 in 1959 I had a perforated peptic ulcer and had 2/3rds of my stomach removed. I believe that the association between gastric surgery and PA was not universally recognised.

I made a good and rapid recovery from the operation but by the late 1960s I began to feel very run down, tired and lethargic and blood test revealed that I was very anaemic and put on iron.

However my symptoms got worse until I was like a Zombie and my GP arranged for me to have a Shillings test which involved taking radio active B12 and measuring how much was "lost" through the urine. The test result was inconclusive.

My health continued to decline and a couple of years later the GP sent me for another Schillings Test and was seen by the same man as before. "No-one has two Schillings Tests" he told me. I replied "I do" and did and the result this time confirmed what my doctor had suspected - it was P.A.

When she got the results she asked whether I wanted the good news or the bad news. "Give me the bad news" I said. She replied "You're going to die within 3 years"

"What's the good news?" I asked. "You're not going to die if a) you eat raw liver 3 times a day, or b) if you have Cyanocobamalin B12 injections every 4 weeks for the rest of your life"

As much as I love cooked liver and onions with chips I decided I couldn't face it raw so I opted for the injections and 43 years on I'm still going strong.

True I do still experience some of the side effect of PA especially toward the end of the third week but do have the option of having an "early jab" prescribed when I feel the need.

I wish you well,

clive(still)alive. Thanks Doctor Wool - you were brilliant and never gave up on me.

[leahcim]

wow thank you for all your replies people i hope you all get better/ continue to improve etc

[wedgewood]

I'll try to keep this short! I am a 77 tear old woman. I had become very exhausted, tired all the time and breathless. Everyone said 'It's your age, what do you expect. ' So I just resigned myself to it all. Then I suddenly got worse feeling very giddy and confused. Couldnt find the right words for things. etc. Also my feet had started to go numb! G.P. took blood,and said that my B12 was "a bit on the low side, so I should eat plenty of green leafy vegetables and come back in 6 months!" I looked up B12 on the internet and learned it was only found in meat fish and dairy products and that the leafy vegetables contained Folate(B9) Upon this I paid £100 to see a private doctor and had another blood test £70 . The result was that my B12 was very low (130) and my folate, B9 was perfect. AND that I had the anti-body to the intrinsic factor----that means P.A.

Back to my GP who then gave me loading doses (5) and said I could have 1 injecttion of Hydroxocobalamin every 3 months. My numb feet were not neurolgical but ideopathic(Means they don't know!) She Will not consent to extra injections even whn I feel so unwell after 2-3 weeks. So after a few months I have found out where to get ampoulles of B12 and I inject myself every week or sometimes more often . My feet have marginally improved. I have condensed this a lot . P A. has brought with it problems with the gut. After a year I have got a Gastroenterologist to tell me that I must assume that I have Achlorhydria or Hypochlorhydria (no or low stomach acid) but there is ni treatment for it. So I treat myself for that too, with probiotics and enzymes. That's my story. !! I have as a result of all this, become very disillusioned with the NHS doctors, who are in bed with the pharmaceutical Industry, who only want to peddle their patented products( All the stuff I take for PA cannot be patented as they are natural products)End of rant!!!

[clivealive Forum Support in reply to wedgewood]

Best wishes from another septuagenarian and I wish you well for an improvement in your condition.

My GP seems fixated on the idea that "one size fits all" without taking into consideration my height, weight, metabolism or lifestyle let alone "how I feel."

During the course of over 40 years with PA and Cyanocobamalin 1mg B12 injections every four weeks I came to recognize the onset of symptoms - tiredness, exhaustion, breathlessness, tinnitus etc. etc. creeping up on me by and during the third & fourth weeks, so as my jabs are done by the surgery's nurse, I dropped in the occasional 3 week appointment without mentioning it to anyone.

Daft like I said to the nurse on one occasion a couple of years ago "see you in three weeks" and she reported me to my GP who "forbade" me from deviating from "what it says on the tin" - i.e. every four weeks.

I was furious and joined the PA Society where I read and learned that "I wasn't alone" and that many others also struggled to get the message across to their doctors the need for more frequent injections.

So I confronted my GP and eventually wrangled out of him "permission" for the occasional three week injection. I'm still not convinced he believes or understands what I'm saying - well - he hasn't got PA has he?

Whilst I was cross with the nurse for "telling on me" I do not blame her as the prescription "on the box" for forty years had read "One every four weeks" and she was obliged to adhere to that - it now reads "Use as Directed".

[Gambit62 Administrator in reply to wedgewood]

On ideopathic - came across it yesterday in a medical context as meaning 'relating to age'.

any excuse not to do anything ...

[boydsfoolishrose]

I was rushed to the hospital due to low blood count..5. I was diagnosed with malabsorbtion, with low b12 and PA. However, it took 4 hospital admits and 14 blood transfusions until they started to aggressively treat the b12. It still took me researching to find out that patients 12 to 15 years post op from gastric bypass surgery stopped being able to absorb iron in any form but the liquid. This is my second month with no hospital stays. They also diagnosed the IGA Def which had plagued me for years. I'm still fighting for a better treatment plan..but at least I'm no longer having the hospital stays.

[Galixie]

How I was diagnosed is a long story. I would shorten it if I could, but I can't.

It started with a phone conversation I was having with my mother. I was just about to turn 34 at the time and I was listening to my retirement-aged mother talk about her part-time job, several bowling leagues, and a softball league that she was involved in at the time. I suddenly realized how much more energy she has on a daily basis compared to myself. The fatigue had crept up so slowly that I just hadn't realized how bad it was until that moment.

Several years prior to that I had begun experiencing dizzy spells, nausea, and loss of appetite that would just randomly flare up and then subside. I had been to the doctor about it, but had been told that I wasn't anemic and they couldn't figure out what the problem was. So I had learned to just live with it.

After the conversation with my mother, I decided I needed to get to the bottom of the fatigue issue. Since I had already been fobbed off about the dizzy spells, I decided not to mention those. The doctor I went to see listened to my concern about fatigue and theorized that I either had a sleep disorder or that I had PCOS. I knew I didn't have a sleep disorder so he referred me to an endocrinologist to be tested for PCOS. I had an ultrasound done and a raft of blood tests. Everything came back normal except for my vitamin D level which was really low, and my ultrasound showed I wasn't ovulating.

PCOS is something that can only be diagnosed through the presence of hormonal abnormalities and the exclusion of all other possibilities. All my hormone levels were normal so the endocrinologist didn't really know what to make of the fact that I wasn't ovulating. She labeled it 'Atypical PCOS' and told me my fatigue was probably from the low vitamin D level. She prescribed me vitamin D and metformin.

Not being diabetic, metformin turned out to be a terrible medication for me. It made the dizzy spells and nausea worse. It was as if it was making me hypoglycemic and, since the mere thought of food was repulsive, I couldn't bring myself to eat anything which just made everything worse. When I called the doctor's office to ask how concerned I should be about the side effects, I was told that metformin doesn't cause those side effects. (It does. They're even listed in the drug information pamphlet in the less common side effects section.) So I stopped taking it and sought a second opinion from another endocrinologist.

I took all my previous test results with me to the new doctor, who agreed with me that metformin was not a drug I should be taking. But she had no answers about why I was still fatigued even after getting my vitamin D level boosted up. She thought I just needed to get more exercise. By this point I knew instinctively that something was actually wrong so I offered this deal; I would take a 20 minute walk every day if she would just keep looking for what the actual problem was. She agreed and drew blood for a set of tests that she was certain would come back normal. One of them was a vitamin B12 test, something that hadn't previously been checked.

I kept up my end of the deal by walking during my lunch break every day for the next week as I waited to get my test results back, but that activity was actually making me worse off. By the end of the week I could no longer walk up a flight of steps without having to stop at the top and recover. It was clear to my co-workers that I was struggling.

So when I returned to the doctor to get my results it was almost comical to me how surprised the doctor was that my B12 level was borderline low (220 in a range of 211-911). She told me that B12 deficiency usually only happened in the elderly. She knew she should do further testing, but she only tested parietal cell antibodies. I believe she understood that more people with PA test positive for parietal cell antibodies than intrinsic factor antibodies and she didn't see the need to run both tests. When my parietal cell antibody test came back positive she diagnosed me with PA and prescribed me one injection of cyanocobalamin a month. She also told me to eat more leafy green vegetables that hadn't been thoroughly washed.

I'm one of the lucky ones who noticed a difference after the very first shot. It was my eureka moment of realization that this was the problem all along. My eyesight improved, my energy increased, my migraine headaches stopped. After nine months on the injections, even my 'atypical pcos' vanished. But I also found very quickly that the shots wore off well before the end of the month, so I was unsatisfied with my treatment level.

I sought out a hematologist thinking that a doctor who specializes in blood disorders would be helpful. Unfortunately he decided that he needed to re-diagnose me for himself. He ran parietal cell and intrinsic factor antibody tests and those both came back negative. So I was un-diagnosed of PA and now I exist in limbo because it is obvious to me that I do have PA, but I can't prove it.

[Catherine50 in reply to Galixie]

I also have had part of my bowel removed due to the small intestine slipping inside of the large intestine ( interterseption of the bowrl) I also recovered well until symptoms of Pa stated I believe about 3y ago. Only diagnosed 3 months ago. But feel great again now. 50y female

[leahcim in reply to Catherine50]

what treatment are you on catherine?

[Catherine50 in reply to leahcim]

Im on Hydroxocobalamin 1mg/1ml for injection ampoules

[Gambit62 Administrator in reply to Galixie]

Sorry that you are suffering from an ignorant hematologist who doesn't understand that both PCA and IFA are at best 50% accurate so a negative result doesn't mean you don't have PA ... a positive result in the past means that you do

Does this mean that they have stopped treating you? Certainly hope not - if they have then it would be very negligent of them.

[Galixie in reply to Gambit62]

I am still being treated but I feel as if it is always a tenuous thing that can be withdrawn at any time because no one I've seen has considered the one positive parietal cell antibody result to be equal or more important than the negative results.

To continue my long story, after I saw the hematologist, I later switched to a naturopath who really wanted to believe (and to convince me) that my problem was actually leaky gut. She refused to believe it was PA because she wanted it to be something she could fix. That turned out to be an expensive waste of my time and I stopped seeing her.

Instead I started sourcing my B12 online, and that worked for a bit until there was a massive shortage and the prices skyrocketed. But I became concerned about buying in online after I purchased some that was from "Sunshine Labs" which was labeled as manufactured in the US. It turned out to be from the Dominican Republic. As far as I know there was nothing actually wrong with the contents of the vial, but it was alarming to discover that it was not the product I thought it was. Especially since I was halfway through the vial before I found out about the label being wrong.

After that I tried a new naturopath. So far the new one has been much better although I sense a reluctance to admit that it is actually PA from her too. But I think that is because she suspects I have the MTHFR mutation instead of PA. We don't know because I haven't had any genetic testing done. At her urging I have switched from using cyanocobalamin to methylcobalamin and it does seem to last in my system longer than the cyano did. Right now I am on once a week injections of methyl and it seems to be working.

I think I might be slowly convincing her that it really is PA because I also have random flare ups of another form of anemia, anemia of chronic disease (ACD). ACD happens in people who have kidney disease, cancer, or autoimmune diseases. Since I don't have kidney disease or cancer, by process of elimination it's got to be from an autoimmune condition and PA seems like the most obvious culprit.

It's possible that I might have PA and the MTHFR mutation, but I won't know unless I have genetic testing done. Right now I'm just happy to have found something that is working.

[clivealive Forum Support in reply to Galixie]

WOW Galixie - I hope you find a solution soon.

You don't mention that you've had any stomach surgery.

This caused my PA 43 years ago and which has been successfully "kept in control" by monthly Cyanocobamalin 1mg injections - that you started off on but which was sadly discontinued.

The other option I was given was to eat raw liver 3 times a day

[louloubell121]

Four years ago out of the blue I began shaking and suffering with severe anxiety I went back and two to the doctors who put it down to anxiety and supplied me with anxiety medication I then began to get tingling and numbness through my body and felt like I was walking on air and constantly dizzy blood tests were done and my b12 was 67 I started on cyanbalomin which helped then doctor stopped them and all symptoms came back and I battled on like that for three years I was even sent to counselling as my doctor said symptoms were in my head I'm the last six months I have seen another doctor who is amazing she started me on injections every three months and they helped but not for the full three months she has now said I can have them every two months so hopefully im getting somewhere its been a long few years

[Serendipity16]

I went to the doctors for a few years feeling anxious, thinking less clearly, lots of mouth ulcers, pemament sniffles, girl problems and feeling run down. My folate has been between 3 and 5 for years and I have just been given supplements for this now. I had previously been tested and treated for anaemia on occaision (since 2000-2010 maybe 3 times? the 1st after an operation). My b12 was first tested in 2011 when I was really run down: 147, I was then tested over the next year (158 consistently 3 times). I finally got MMA and homocysteine tests. Homocysteine was high (about 17). Started B12 injections (6 over 2 weeks in Jan 2013) brought me to about 500. After a year with no further supplementation (as apparently I was now fine) I was back at 160. I had 6 injections Jan 2014 and been on 12 weekly since. Going to get folate and iron up then think about pushing for 8 weeks due to anxiety/ fog etc. I have had Raynauds disease all my life but as far as I know this is not linked. I still don't have a reason that I have poor b12/ folate/ ferritin (intrinsic factor clear).

[bethH]

I moved away to University and had felt very sickly for a few months prior to the move but put it down to nerves. I was at univerisity for about 3 weeks when I started physically being sick and was very dizzy/light headed and was struggling to do anything, I came home for the weekend and was taken to the walk in clinic where I was told I had severe homesickness and was sent home with anti sickness tablets.

I can't remember the next week but I was basically shutting down, having panic attacks and couldn't keep food/drink down etc then was taken into hospital and my parents were told that they didn't know what was wrong with me and that I was in a serious condition. (the nurse told me the next morning that she doesn't know how I was functioning because my body had started shutting down)

I had a blood transfusion (4 pints) and was in over night and then had to go and have a blood test every week for about a month and a half because my bloods didn't go back to normal and the Haematologist was worried that I leukaemia, luckily I didn't and was diagnosed with PA and now i have an injection every 12 weeks.

[Kristl]

Hi, I was suffering from bouts of very low energy, tingling and my tongue was always very sore. I looked for the symptoms online and found B12 deficiency. I asked my GP if that could be my problem. He more or less dismissed the idea as very unlikely, but on my insistence agreed to do a blood test, saying he thought it was a waste of time. When the test came back he apologised, I was B12 deficient. He said, in a very surprised tone, that several of his patients had been diagnosed with B12 deficiency in the same week.

I have been on 10-12 week injections since, but sometimes supplement in between with B12 patches when I feel a bit low.

[LucyG82]

Im a 33 year old woman and I was diagnosed (finally) about 14 months ago.

I'd had dizzy spells, including a horrific bout of vertigo/labrynthitis along with weakness, fatigue and general grottiness for a few years, but all doctors had said was "drink more water" or offer me antidepressants.

I finally saw an amazing doc for something unrelated and mentioned the dizzy spells. She immediately ordered a test and discovered the PA alsong with a helicobacter pylori infection she thinks may have contributed to it. I got my loading doses and felt like a new person.

I went on to 3-monthly injections which were nowhere near enough, but docs insisted I didn't need any more because "we don't like you to have too much". Couldn't tell me why or what the side effects might be, just that they didn't like it. The original awesome doc that diagnosed me had left by then, unfortunately.

I moved to a new area and a doctor there agreed to put me on injections every 8 weeks, but it's still not enough so I self-inject weekly and take lozenges, although I don't know if they help. I'm still quite new to self-treating, so I am learning what works for me. Luckily, I have experience injecting animals, so I don't find it too weird to inject myself.

I am quite concerened about the increased cancer risk as cancer runs in my family. I have also suffered with bullimia since I was a teenager, so god knows what other damage has been done to my stomach.