Due to my ongoing failing health I've had to do my own research as to the pathway of blood test results, symptoms and the progression/knock on effects of having doctors who refuse to help. I have had to be extremely proactive in my own diagnosis, following the path of autoimmune conditions (co-morbid) from:Celiac Disease
Gastritis
Acid reflux
Neurological symptoms
Muscle pain
Joint pain
Oesteoarthritis
Dye eyes
Parotid gland CA
Difficultly swallowing
Rashes
Photosensitivity (UV)
Family history PA
Foot pain
Crawling sensation lower limbs.
Vitiligo
Fatigue (extreme)
Poor sleep
Excessive sweating (face)
Anxiety
I have now had a diagnosis of PBC. This was totally out of her blue as I am a none drinker so never had concerns about my liver, this came to light after I pushed for numerous tests. The ANA test result picked up speckling on my Hep-2. I was not given this test result for over 10 months. It was found by myself whilst going through a pile of results printed out for me by accident by the deputy manager of my primary care centre.
The report stated that the laboratory had no explanation for the speckling result, the term used was the clinical significance is unsure?
It took me about 20 minutes of research to narrow this result down to " this is an autoimmune response" ... And points to one of 4 possible diseases. I fought and fought... I argued and sent evidence, I requested the next step of blood tests, then the next, and then more.... To the point the doctor's were clearly fed up with me contacting them.
Whilst trying to diagnose which autoimmune disorders I have, I am still adamant that I have PA. I ask again for the B12 blood test using the name Holo-TC as I need the active B12 not the overall test which is extremely unreliable. I also asked for Homocysteine and MMA and iron panel. Iron and Homocysteine came back normal but the laboratory did not test my MMA. They put a note on my printout asking why this was requested?
I was so annoyed at this as it's stalling a very important process of elimination by myself, who is trying to show a pathway between my symptoms, family history and blood markers.
I am still working full time and I am finding everyday truly exhausting. My pain level is nearly unbearable. I have cut myself off from family and friends as my health is so debilitating I am horrible to be around. All I do is research my symptoms and present these findings to my GP.
To top it all, the diagnosis of PBC was sent to me via Ask My GP which is basically a messaging service. Good job I'm not easily upset or unhinged getting information of that magnitude in that format. PBC is not something you recover from. It's progressive and will eventually lead to liver failure.
In my quest to unravel my symptoms I discovered that the high dose of Omeprazole they told me to take (14 months 40mg twice daily) could have caused PBC. Along with celiac disease ( wheat intolerance) and B12 (PA), also positive IFAB (1.63AU) and other types of allergies towards foods and environmental factors ect you would think someone would have an epiphany and think "wow" she's not depressed after all.... She really is ill....
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Allywales8663
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As you have tested positive for the intrinsic factor antibody test, you should be on lifelong B12 injections, You must get these injections ASAP. Then after loading doses , as often as required to keep B12 deficiency symptoms at bay. . You must insist on this.. …. If it doesn’t happen , get in touch with the PAS, who will support and help you.
To prescribe you Omeprazole for 14 months, shows dreadful ignorance. . your stomach acid is already horribly depleted through the destruction of your parietal cells, by the I.F. antibodies .
So getting your B12 injections will be the start of your journey back to good health. . Then you can start tackling Other issues.
Oh Wedgewood, If only it was that easy. I have fought and failed to get this treated. I have not given up but my health is at its lowest point ever. I've recently been requesting tests (Homocysteine, MMA) which I was hoping would be elevated in one, the other or both test results. They only tested my Homocysteine. The laboratory put a written paragraph on my test results asking for the significance for raising these tests. And obviously this was not for my eyes to see but I request copies of all test results. They informed my GP that they will hold the specimen for 14 days, then it will be destroyed. As you are aware, the slowness these GPs work at is across the board so I will probably have to repeat that blood test (MMA) which is once again slowing down the diagnostic process.
I don't even know what stage I am at with PBC. As I stated above I had a message then radio silence. I have a sneaky suspicion that they hope I will die quietly so that they no longer have to deal with me. All this suffering for the sake of B12 injections that cost pennies. Thank you so very much for your reply, it's supporting to hear from other people with knowledge.
As you have a positive test for Intrinsic Factor antibodies , your surgery is absolutely obliged to treat you with B12 injections . Contact PAS - you are a member ,and they will intervene on your behalf .
I would change my doctor or surgery ,as they are so appalling. As I’m sure you know, pretty well all of us on this forum have to self inject B12 , as doctors will not give us sufficient injections to keep symptoms at bay . You may eventually resort to self injection also . You can get information about it here , should you ever need it . We can get b12 ampoules from German online pharmacies . Not expensive. In Germany no prescription is required for B12 ampoules .
My intrinsic factor test came back as 1.63Au. I am in Wales UK and they have changed the way they interpret the test results. If I lived in England I would have had a diagnosis by now but Wales now score between 0-20. I have told them that they cannot change the way they interpret a test unless they change the test itself! But it's fallen on deaf ears, they will not even discuss it with me. Yes I do follow the forums as much as possible. But due to still trying to work full time (demanding healthcare roll) I am usually exhausted when I get home and collapse into bed. I am a night shift worker with unstable D3 levels. They did prescribe D3 but without the K2 needed so I now purchase this myself. But due to my gastric problems, I am unsure if I am absorbing? I tend to hold at the 60 range?
I am finding the fight hard.
I am drained.
Thank you again for your reply. It means a great deal to me.
I can only suggest that you self -inject b12 . As you have Pernicious Anaemia , you will have gastric problems . The antibodies you have destroy the parietal cells in your stomach . Those cells produce the intrinsic factor and stomach acid both of which are required to absorb vitamin B 12. Stomach acid is also required to absorb other vitamins and minerals and trace elements. Lack of stomach acid upsets the stomach flora.. This enables bad bacteria to flourish giving you gastric problems like bloating and pain. On top of that you have been taking. Omeprazole., a PPI a proton pump inhibitor which deplete any stomach acid you might have. You need a probiotic to help restore your stomach flora. This can be in the shape of probiotic capsules., a water-based probiotic called Symprove, , or best of all natural probiotics like fermented foods e.g . Natural yoghurt.. sauerkraut.or best of all home made kefir . This will re-establish stomach flora. I know this because it happened to me. I used Symprove , but it is quite expensive . , but useful if you don’t like kefir ,made from whole milk . Home made kefir is the best and cheapest probiotic . Better than shop bought kefir which is not made in the traditional way . ( didn’t know this when I had my gastric problems , unfortunately. ) But you need to have B12 injections at the same time. I’ll send you some information which you might find useful .
Yes I do but Kefir when I can find it. I've also tried that strange tea ? The name escapes me now as I'm tired... Starts with a K. Brain fog at its best I'm afraid. My problem is I'm not consistent with food stuff. I know it's wrong but I hardly eat anything. Maybe one meal a day. I've upped my water intake and can eat apples and the odd banana. I have gluten intolerance so it's difficult to eat.... Working only 4 shifts per week now but due to it being night shift, I basically only get 1 whole day per week when I'm able to batch cook something i can tolerate. I'm limited by likes and allergies I'm afraid. Tomato, onion, garlic and other nightshades are out of the question. Eating is no longer enjoyable so I've grown accustomed to going without. I'm basically an undiagnosed celiac.... I cannot get tested as I gave up all forms of wheat and gluten containing food over 5 years ago. All my medication has to be "clean" as well. No additives GMO ect. As if I didn't have enough wrong with me I also photosensitivity... UV light from natural and artificial sources makes my skin flare up, my eyes react badly and my mood swings are horrific. I live in the dark at home which helps, but when I go outside in daylight I can feel it draining me. Sjorgrens syndrome has been mentioned to me but no action taken by my GP to investigate further, even after a report was made by my optician that the likelihood was probably based on my eye exam.
Syorgrens is another autoimmune condition , auto immune conditions rarely come alone. I have three. started with rheumatoid arthritis, then Pernicious anaemia, and lately vitiligo. From reading posts on this forum,for over 10 years , I see companions that Pernicious Anaemia and auto immune thyroid conditions are the most common “companions” . I’m glad that you have found this forum where you will always find help .
Do make your own kefir . Home made is superior to shop bought . It’s very impractical to retail traditional kefir because the yeasts in it develop gas . One company make it in Wales “ Chuckling goat “ Expensive but marvellous !
You need some kefir so called “ grains “ to start it off It took me a few goes to establish it but now so easy to make . Read all about it online I think it’s fabulous stuff. .
The drink you are thinking of is KOMBUCHA made with tea I believe . .,…. It’s hood but not as good as your own home made kefir . Do start self injecting asap. Ampoules from Germany usually last for 2 years .
Hi, Allywales. I'm a [retired] scientist, not a medic, and I did spend a lot of time performing IFAb tests and lecturing on them. It's really quite difficult to interpret exactly what a result of 1.63AU means. The 'AU' typically means 'Arbitrary Units' or 'Antibody Units', but there isn't [or wasn't] a definitive method or standard for IFAb; we're at the limits here. What did your laboratory give as a 'Reference Range' for IFAb when you had it done? The problem with the test is that it's important to discriminate between 'noise' and 'signal'. '1.63' to me doesn't sound very positive, to be honest but without a reference range it's impossible to interpret.
My experience was that when we found low levels of positivity, then in true cases of PA, the level would rise in a matter of months. Only around 50% of cases had any detectable IFAb anyway, despite having clinical PA.
It's important that you have access to a doctor who can interpret your results and advise you on their significance.
My personal experience and opinion is that reporting in numbers, rather than an interpretive report in words, gives 'false precision' and helps nobody. I appreciate that this might not be what you wanted to hear!
I had the same problem as you. B12 deficiency was staring my GP in the face yet they refused to admit it, whatever evidence I was able to provide by private blood tests I had done. My MCV was consistently above 101, with 98 being top of the range. I have numerous symptoms and Hashimoto's and possibly, Sjogren's too. Autoimmune conditions love company!
I just gave up battling with the NHS and went to see the expert sympathetic doctor often mentioned on here.
That was last Wednesday. He diagnosed PA straightaway, gave me my first B12 injection and provided me with enough supplies to tide me over until I order my own from Medisave and the ampoules from Germany. I am to self inject twice a week initially. I did my first self injection last Saturday.
I am a pensioner but the cost of the private consultation and the ongoing costs of buying my own B12, are affordable and my health is worth it.
There comes a point where you have to prioritise your own health above battling the system.
I know it's wrong and you should be able to obtain what you need on the NHS, but when they wouldn't listen to me I decided I had wasted enough time and took my health into my own hands before it deteriorated further.
I'm not allowed to give details of the doctor I saw (though many people on here will know who I mean) but if you want to know, I could send you a chat (private) message.
I know who you are referring to, the doctor we can't name. Yes, autoimmune conditions do indeed like company lol. I've ordered an Active B12 kits from Medichecks last night. My nurse friends are helping me with needles and where to purchase the B12 ampoules.
I am sending a request into my GP tomorrow for B12 ampoules, needles and alcohol wipes. I expect this to be refused. But I also state that if I am refused, I want the request and refusal documented in my patient notes. They apparently hate this, so I do it every time I contact them.
I agree that the only way forward is to now treat myself. What the hell do I pay National insurance for? I did loading doses before and it seemed to start working. But the cost was too much for me at £20.00 per injection every other day. I used to work 2 jobs but have had to cut back.... Only 4 night shifts a week now, but even that is killing me.
Thank you for getting in touch. It helps to hear from other people as I don't have family, so my work colleagues are my family.
Ampules and injection kit cost c£2.00 per injection DIY. If you've already had some you know you won't have anaphylaxis. £365 per year isn't too much to pay for health and sanity. Honestly self injecting is not difficult.Battling the system is too exhausting and every day you don't have enough B12 you will be getting more damage.
The key "test" will be how well you respond to regular B12 injections.
The cost would be much lower if you self-inject. There is info on here on how to get B12 from Germany. It would make sense to try every other day injections. I suspect it will clear up many of your symptoms. It may get worse for a little while before it gets better (reversing out). Then try to tackle the symptoms you have left over not cleared up by the B12? Very best wishes. It is very unfortunate that it is so hard to get doctors to treat PA effectively. It is not clear if you are saying you are celiac or if that was something tested for. If you are celiac you need to be very careful. I have a friend who is. She can't even eat toast made in the same toaster as regular bread or eat anything fried where the restaurant had used the same oil for something with gluten in it. If you are not sure if you are celiac, it would not hurt to do a gluten free trial. I have a nephew who never got a formal diagnosis, but it was very clear from how much better he felt by avoiding gluten and also that he is sensitive to tiny amounts that he is celiac.
With regards to being Celiac... I started to become ill in 2019.... Just at the start of Covid. Long story short.... I stopped eating wheat and gluten after a process of elimination. No help from my GP as they were phone calls only, and guessed that I was having constipation issues, so advises me wrongly to eat more wheat and high fiber.... End result of that was bleeding from the back passage.... I looked 9 months pregnant with twins at this point...and my intestines were ON FIRE. So I cut out everything that had wheat and gluten in. I've only had 3 incidents of glutening myself by accident in 5 years now... Due to bad labeling. The stomach pain was unbearable... I was rushed to SDMU (surgical decision making unit ) of my local hospital as it was that bad. They diagnose Gastritis ? I explained that I believe I'd ingested gluten by accident. They then wrongly told me and arranged an endoscopy procedure .... As the surgeon stated if I was a celiac, he would find the results in my T-cells. I stressed the point that I'd not eaten wheat in 5 years ... He spoke over me again as I said " don't you have to eat wheat for 6 weeks before a blood test or biopsy of the stomach. He said no....it will be in the T-cells.
And yes, you guessed it.... He was wrong. So I've not been able to get a written diagnosis... I can only class myself as none Celiac wheat intolerant.
I have a nephew who is celiac. He never got a formal diagnosis. After realizing how much better he felt without gluten, he was not willing to eat it again to so they could test. He accidentally ingested some recently and ended up in hospital.
Hmmmm, and they call this a wheat intolerance? It's a lot more than a intolerance if you ask me. And I bet you're nephew feels the same. I cannot describe the pain !!!! No diarrhea, just pure pain. Best thing was about my trip to hospital that day (best is a play on words) was a nurse walking up to me holding a meds pot of pink liquid. I knew exactly what it was but I asked anyway " what is that nurse"? Oh it's peptac, it will ease your Gerd/heartburn.
I said "thank you but I can't take peptac, it has wheat in it" only Gaviscon can be taken by people who are Celiac/wheat allergy.
I made it my mission then to educate a few people in a nice way. Starting with the pharmacist at my local branch. I asked if he could guarantee that peptac was safe for gluten/wheat sensitive people. Guess what, no guarantee was forthcoming.
The worrying thing is that this is not included in my notes. My doctors surgery prescribed Gaviscon advanced every month for me. I presume they know or they would cancel my repeat prescription. They love cut backs, telling us that we can purchase this OTC (over the counter). I do wonder why I pay N.I.....
If we made errors like this in work, it would be reported to Safeguarding... Now that's a investigation you don't want to be involved in. But it seems errors are made in other settings, with no comeback.
Now I question everything. Doctors are not gods, surgeon's also get it wrong. If you do not feel happy with taking a medicine, do not take it. Do your own research, you can even phone the manufacturer yourself and ask if there is wheat/Gluten in the product. Even the threat of cross contamination could be game changing for people with undiagnosed celiac disease.
I never had a formal test for PA but I am positive I have it. I had low B12 levels. I was sleeping 16 hours a day and had so many other symptoms that went away with getting B12. I am fortunate to have a doctor that supports me with this. The problem with PA is that there are tests that confirm you have it. But they have high false negative rates. So the test can be negative in a large percentage of people who have PA. It would make more sense to me to start loading doses. You might need to get it from Germany like everyone else. If it helped before, it will probably help again. If it helps, assume you have PA and make sure you have life long treatment for it. After you reach a place where the symptoms are gone, experiment to find your maintenance dose. I get tingly toes at the moment after 3 weeks. So my husband gives me an injection once per week.
I was going through the tests myself, as my GP is not putting me forward for any follow up blood appointments. I thought right, Homocysteine and MMA.... Recheck Iron panel.... I will nail this via the backdoor (so to speak). Oh no, this was not ment to be
Homocysteine was completed, negative. But the Laboratory "pinned" yet another comment to my paper results (I don't think they know that I request copies of every test) stating that the didn't see what the "relevance" of these tests were about.
Ok, I flipped. I wrote a strongly worded reply, through my Deputy Practice manager at my doctor's surgery, basically informing the "laboratory" to butt out of questioning why a test had been requested. They do not know my medical history or symptoms, have no idea of any aspect of my life, just do your job and test the blood sample.
And I held back a lot on that response. Trust me, they were not the words going through my head at the time.
My test results ANA positive showed "speckling" on the Hep-2. The laboratory wrote on my test result that the significance was uncertain!.
I did an hour's research and discovered that it WAS significant with regards to autoimmune disorders. Several were mentioned. I was looking to prove that I had Sjorgrens Syndrome primarily, maybe Lupus.
I then requested an AMA because I wanted to dig deeper due to my massive list of symptoms, most of which cross over with a lot of autoimmune disorders. That was when this PBC was discovered. I still believe this is not all that might be wrong with me. I now have to push further as I think they are going to stop at this diagnosis? I will add a screenshot of the result when I find it for you to see.
So, after the initial shock I got to studying even more in the topic. Wondering how the hell this has happened to me ? As it's not linked to lifestyle as such.
I am an undiagnosed celiac, terrible stomach issues previously, digestive problems, food not being broken down, Gastritis flare ups ect. I cut out all wheat and Gluten 5 years ago. I was then prescribed Omeprazole at a high dose (40mg) morning and tea time. Never once was I warned that this alone might cause (Liver problems).
14 months later I had enough knowledge that I stopped taking Omeprazole as I realised I was suffering Gerd due to LOW STOMACH ACID, not high. I set about correcting my acid levels naturally. Apple cider vinegar, lemon juice and fermented foods.
There is a clear correlation between Celiac disease, Omeprazole use, altered gut microbiame, B12 deficiency, acid levels, Gastritis ect.
Never once was I checked in the 14 months I took this dose of Omeprazole for Liver issues. Never had a conversation with a GP warning me than high doses could in fact damage the bile duct as basically, by taking Omeprazole you are stopping the natural function of the stomach and associated organs, causing a back up in the liver which technically erodes the ducts.
I truly believe I am B12 deficient. But I do agree that I have a multitude of cross over symptoms which is causing the medical profession (GP) no end of trouble to diagnose.
I warned them nearly 2 years ago that they should be treating me for B12 deficiency, due to the neurological symptoms I was experiencing, but due to the NHS only doing the overall B12 test , not the Active B12, I could have been diagnosed sooner and saved them a FORTUNE on complicated, ongoing blood tests.
The bottom line is *they don't care". You are just a number to them. I will carry on being a total pain in the ar*e..... I will point out their failings, the lack of patient care, compassion ect. This lot couldn't follow a "diagnostic path" if Quincy were holding their hand.
I'm outraged and disgusted on your behalf Allywales. I hope you can start injecting soon and see some positive changes. Prioritise yourself now outside the NHS, then you can continue the fight when you are stronger.
Myoldcat,I can not express the feelings I have with the support through these replies, including yours. I have very little support away from support groups. Being a very private person I find it difficult to inflict myself upon others as most do not care or understand. It's like back pain. Unless you've suffered, you will never know how debilitating it is.
Kind words are supportive in many ways. Especially as I feel ignored by the medical profession. My job entails looking after people with quite serious mental health problems, I also worked/work for the NHS. I gave/given my all. I do not do this for reward as such, the pay is abysmal, the hours long and thankless. Management want more and more and give nothing in return.
I just wish people did their jobs properly. I wish more people did kind deeds, I wish communities pulled together locally.... But I'm afraid this is the way of the world now. My old mum has a saying, I didn't used to like hearing her say this as I thought it was depressing. She says " I'm glad I'm on the way out, not on the way in". Looks like I'm turning into her lol, as I now say this very thing.
Anyway, thank you for your reply. It means more than you know at this unsure time.... If anyone ever feels the need to talk, and be listened to about whatever is bothering them, feel free to message me. I will always respond but due to working nights, it may take 48hrs for me to see pending, unread messages.
I had ibs type symptoms for years which improved after cutting out gluten. I also used to get allergic lumps near my spine which stopped after going gluten free. Coeliac tests were negative and I was never referred to a gastroenterologist.
There are PAS support groups in UK including in Wales.
Hi Sleepybunny, I am a member of PAS but never thought to contact them directly. I joined for advice and forums as I find other people going through this have been more supportive towards me than family and friends. I've chosen to cut myself off from everyone in my life atm due to their reactions towards me "moaning" all the time.
I feel like a burden to everyone. And no, I don't suffer from mental health issues (suggested by nurse practitioner). I am a mental health support worker so know the signs. I feel angry, no depressed. And no, I don't want antidepressants (because I'm not depressed). The medical profession drives me mad !!!! Only one person has taken the time to listen to me, the deputy practice manager. But I believe she will be silenced soon.
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