As you know I was dx with PA by my GP in Oct 2022 with a B12 0f 106 ng/L. Vitamin D and folate were also rock bottom. I had lots of symptoms including neurological symptoms such as heart palpitations, pins and needles, visual disturbances, facial neuralgia, extreme fatigue etc etc.
GP gave me 6 loading doses. Nothing else, not even a follow up.
I consulted a private B12 specialist who put me on EOD B12 and high dose folic acid and Vitamin D. They did a blood test and confirmed I had autoimmune antibodies. Neurologist then excluded any neurological autoimmune condition.
I could not work for 18 months (6 months of which was prior to dx).
Fast forward with self treatment and supplementation, I have made a great recover, not 100% but hovering in the 75% arena.
Last week I had a long-awaited gastro appointment and gastro did a colonoscopy as referred for by my GP but no gastric screening.
I had written to my GP two weeks prior to the colonoscopy expressing my concerns that I was at a higher risk of gastric cancer with PA and should be screened for gastric cancer.
I have just received a letter from my GP whose response is that my B12 is no longer low and I have no other markers of PA ie both intrinsic factor tests were negative and MCV is normal and I have never been anaemic. The final sentence is that "The gastroenterology team may have chosen not to go down this route (ie the gastric screening) as although your B12 level was previously low you did not have the other markers for pernicious anaemia that would usually be found on the blood tests".
So now the GP who told me I had Pernicious anaemia is back tracking and not supporting further investigation. I have never been a vegetarian, never been on PPI and never had any stomach operation so how on earth did my B12 get as low as 106 ng/L!!!
I know what you guys are going to say ... thank you in advance ... I just need to hear it.
🤗🤗🤗
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Wwwdot
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I can not for the life of me think why they did not do a gastric screen but then saying that anything abnormal would have been reported when they did the gastroscopy. On mine they reported a hiatus hernia which I knew of and errosive gastritis ! Did they do a colonoscopy ?
I hope you have copies of your blood results.
I was sent to see a swine of a neurologist who totally dismissed my symptoms and tried to label me with FND..... If you remember.
Try not to upset yourself your not alone in your plight, yep you know the answer keep 💉ing. 💐 😘
Point of help. If you Google a group called Patient Knows Best and join it, it will have all your test results etc for you to see. I have only recently found it , and have seen full blood test results and it says things like, eg " scan results not in until 20th Feb ."Also the NHS app has results etc. but I just use PKB.
So sorry to hear you're having this upset. You helped me when I was at my worst so please know that I and this whole group completely gets it and supports you. The upset these GPs cause us in unnecessary and the very last thing you need. Their focus on negative IFAB testing is ludicrous! You're so strong to have taken your health into your own hands so far. I can't say anything useful in medical terms but sending you a huge hug 🤗
As your first B12 antibody test was positive, then you have Pernicious Anaemia . NO MORE DISCUSSIONS or testing for antibodies .It is irrelevant that subsequent antibody tests came up negative . That is the way of antibodies . Sometimes they show up , sometimes not when you have Pernicious Anaemia . You must be on B12 injections FOR LIFE .After your loading doses you should have received regular b12 injections to keep you free of B12 deficiency symptoms. Shocking that you didn’t . You must try and obtain that blood test result with the positive autoimmune antibodies, show it to your GP , and politely request ( polite might be difficult , but try hard ) a resumption of B12 injections, and to obtain the colonoscopy .Your positive test for autoimmune antibodies is 100% a “marker for Pernicious Anaemia.
You do not necessarily have iron anaemia when you have Pernicious Anaemia . You GP should know this .
You must try to get the cooperation of the private consultant that did your antibodies test . and get copies of the result you speak of to show to your G.P.
You need B12 injections . Many of us have to self inject to keep well. If you ever find that you need to , you can get all the necessary information in here .
The GP has all the results. They were the ones who told me B12 injections for life then gave me only 6. The GP has never prescribed B12 apart from first 6 doses.
The referral to gastro was made by GP but apparently not for PA and stomach cancer screening but for colonoscopy screening as both my father and younger brother had bowel cancer. Light in the dark is that colonoscopy showed no polyps or sign of cancer but it did die severs inflation small colons - I was told by gastro.
So many GPs are trying to get out of giving B12 injections , and are ducking and weaving to achieve this . Why?
I believe that it’s because the nurses who do the injections now are paid out of the general fund that each surgery gets from the NHS . The more nurses that are employed , the smaller the amount left to be divided up to the GPs and partners . So they try to keep the number of nurses as low as possible . …..
Do you have copies of your results ? If diagnosed with PA you must be more insistent and ask who is going to take responsibility for your decline of health. You help me with a letter now write your own by addressing the surgery manager.
It's a shame you cant get another colonoscopy albeit you didn't say how long ago you had the last one. Mine showed a large part of my intestine to be inflamed up to the illium ! It sounds as if you also have inflammation but nobody seem's to have ruled out the cause. I would be asking questions ie why you were given a course of only 6 loading doses when your B12 was significantly low ?
Dont get the gastroscopy mixed up with a colonoscopy which is another proceedure. Did they carry out both proceedures ? I shall make damned sure my gastrologist puts B12 for life, that's if I ever manage to get back to see him, it's been months of waiting !
This is all very stressful for you but somehow find the strength to question this Dr's incompetent action.
I have copies of everything and the GP has passed mr from pillar to post. First haematology which was a waste of time and who said nothing was wrong, then a neurologist who said all fine so back to GP, then a dietician who told me to eat cheese then finally the gastroenterologist who did a colonoscopy and said I had to discuss b12 with my GP as they have no experience of PA. My colonoscopy was last week. I have never had o r before. I have never had an endoscopy (stomach screen). Now the ball is back in GP court after a two year pass the buck he is now saying PA was only suspected but I can remember the call telling me I had PA very clearly and I was told injections for life even though they only gave me six.
I went down the same rout. My haemo a top lead consultant in London admitted she knew nothing about PA ! The Neurologist was an arrogant swine of a man that totally poo pooed everything I said.
So it was a colonoscopy you had. Did they give you any paper work after it was done such as photos ? I was issued mine.
As you say round and round in circles being pushed from pillar to post. Ihave been waiting since Jan for a capsule swallow to follow up something seen onmy MRI they cant identify. My annul angiogram for an enlarged aorta was done over two months ago and i'm still waiting the results ! !
Unfortunatly with what little energy we have we have to fight this outrage or carry on medicating ourselves. 🤗
Photos on medical file only. I have a written report but awaiting results of samples they took from severely inflamed areas. They talked about H. pylori and SIBO which is what I was saying two years ago but no one listened.
I am really struggling to restore my gut health after the prep for the colonoscopy so back to where I was a year ago - at least this time I know what I have to do but it will take months to get back to where I was.
Sorry to hear you’re having issues too - I know we all are. I just feel tired and deflated and back to square in - I know I am not but that’s how it feels at the moment.
SIBO can be tested for with a fasting breath test series taken over 2-3 hours, available on the NHS. I was referred by a haematologist. This can rule small intestine bacterial overgrowth in or out.
Mine was "inconclusive": my GP trialled me with antibiotics afterwards, which did nothing except give me a constant headache and vertigo - GP said a negative reaction (but could have been wiping out B12 ?) and ruled SIBO out as the issue. I think she was right to do so. The search for answers continued.
Colonoscopy revealed two polyps which were removed and were benign. Gastroscopy revealed "flattened mucosal pattern at D1 and D2" (duodenum) and "patchy gastric metaplasia" - nothing happened after Coeliac disease ruled out.
I have had three negative IFab test results. My MMA however was raised - despite my frequent B12 injections, it stayed that way for three years. My GP diagnosed me with functional B12 deficiency, and this was confirmed by the testing laboratory. Years of tests and consultants investigations revealed "nil else" !
Folate and ferritin can still be a bit blippy and unreliable so I take multivitamins twice a week - no-one's doing the regular monitoring now - and I have vitamin D and Raloxifene for osteoporosis of the spine, now reduced to osteopenia. I also have statins for either CAC (heart artery calcification) or high cholesterol, I'm not even sure now.
Keep going. IFab will only show a positive if antibodies are active at the moment of testing. A B12 of 106ng/L should be a cause for concern.
Is there a way you can download the photo's ? It will be interesting to see what they put your inflammation down to. Mine was put down to the Chron's but as I said before i'm still waiting for a capsule swallow. The prep for the colonoscopy is pretty viscious to say the least and I have to go through it again for the capsule swallow. 😱 I took Kefir after my colon examination.
Like you I also suspected Sibo. My Gp booked a test for it t be carried out in Reading but I suffered heart failure so it had to be canceled. Sods law it was never rebooked.
I have been where you are many times and the deflation of it all is hard combat but somehow we struggle on. It's a constant wearing battle for many of us.
I shoukd have a. Idea of cause in about 5 weeks as they took a sample the pain of which nearly sent me into Irvin and I almost passed out / despite all the sedation and pain relief.
The NHS here do not offer SIBO tests any more but I fed a H Pylori test before the procedure. Results are back but it could take up to 6 weeks for the gastro to process them.
Thank you for your kind words and yes we will soldier on together.
I am so sorry to hear this- and completely understand your urge to weep/ cry/ howl ! Our medical specialists are so underinformed that they are creating confusion and grief on every side. But you are not alone- we understand cry with and for you, because sadly your experience is not uncommon.Well done treating yourself and improving your health so much. You have evidence just there that you needed B12 supplements to be well, whatever the cause of the deficit.
I have also been told by medical people that my iron is fine so I clearly don't have PA. Grrrrrr!
The gastroscopy I fought for and waited for created more angst than reassurance . It ruled out stomach ca, but according to the gastroenterologist also ruled out PA - she believes my positive parietal antibodies are within normal and my serum B12 wasn't low enough.... she is sending me to a neurologist to find another cause for my neuropathy . My GP just shrugged and doesn't know what to think, although she, too, was adamant about the original diagnosis. ( she still doesn't support my self injecting)
Keep doing what you are doing to stay well, and try again. Fight the ignorance, not just for yourself but for future B12D sufferers. Hugs and best wishes 🫂
I'm so sorry to read this wwwdot. It is so hard not to cry. We just get so tired of not being heard by our doctors. I have a friend, 2 in fact that are newly diagnosed and this is their story too, but they don't have ammunition yet to defend themselves. I'm doing what I can to help. Like telling them to self inject. So yes, keep on treating yourself, believing in yourself and your symptoms.
Im about 3 years in now, and my PA, that they didn't believe I have, and some still don't, is starting to cause secondary issues, like thick blood and clotting. So, B12 can do a lot but it can't fix everything. I'm so fatigued, walking is difficult and I huff and puff, so if you are feeling that fatigued, ask for a Beta-2 Glycoprotein 1 IgM and a Beta-2 Glycoprotein 1 IgG
My blood looks surprisingly great for my symptoms. But then my reumy dug deeper and she found secondary issues with those tests. She ruled out RA and MMA so that's good.
Those test will say if your blood has clotting factors. I go for a second test in 12 weeks. That's protocol. What I'm saying is that if the B12 has taken you as far as it has and you're still suffering from breathlessness and fatigue, look into other things.
Also, do you have family history of stomach cancer? That helps in getting the cancer screening. I just was approved for a gastro appoint. in Dec, and it mentioned my grandmother died of stomach cancer and my cousin has it. So I believe family history helped in getting it approved. This is just a preliminary gastric appointment so not even sure they will approve another scope. I'll find out in 3 months and then it will be another 3 to 5 months for a scope if I even get it. I have the same stomach diagnosis as you. And they don't want to believe my 2 positive IFAB tests because they gave me injections already. So I just do my b12 everyday, but now I have to treat these secondary conditions that b12D caused but can't fix.
Sending hugs and support. Don't ever let them stop you from helping yourself at all cost. By the way, showing my reumy photos of what happens to me every night, made her change her entire tune. Her face was pretty shocked at my swollen face.
Take pics of yourself. Record your feelings. Make notes so you don't forget. Arm yourself. OK hugs to you good luck.
I had a good cry last night and just feel flat today. My father died with bowel cancer at 68 years and my younger brother at 56 years that’s why the colonoscopy was done. But no mention of stomach cancer screening yet.
My paternal grandmother died young at 42 from complications due to MS so it looks as if the auto immune issues come from my father’s side of the family.
I will carry on self treating but obviously with less support than the meagre offerings before! I am trying to see if there are different surgeries I could try but it’s hard to find out if a GP known about PA. Any ideas?
This test measures the amount of a substance called methylmalonic acid (MMA) in your blood. MMA is typically made in tiny amounts when you digest protein. 😘
I think the problem is the less of the practice is the primary eye roller who thinks I am “ ridiculous “ direct quote!
I may have to look for a different GP practice. Quite a challenge as I live rurally and there are no practices in the 12 miles between me and my current practice.
That is a common problem now days, I was faced with the same issue. I decided to stick with the same surgery but was now under a different Gp. He is easier to manipulate so my aim is to educate. Can you not see another Dr at the practice ? 😘
Sorry I am multi tasking.
I would confront the Dr and tackle his competence of why he prescribed B12 in the first place ?...... I would be ramming the guidelines where the sun dont shine.
You have had a cooling off period where as I sort revenge on that swine of a neurologist out of anger. 😡
The letter came from the number 2 GP and I can hear her in the letter. The tone of the letter is out of character for that GP. The GPs seem to be dominated by this one woman.
In the first instance I will share the letter with the B12 consultant I saw. See what his response is.
hello dot, been thinking of you and wondering if you were okay. Sorry you have had such an upset. We know we are right and have P.A. and should not let 'them' the medical personnel (I refuse to call them Professionals) upset us but somehow we do. I feel like swearing for you, and no further investigation, what's the matter with them! Sending all best wishes and a hug. 🥰🌷.
It’s the arrogance that really riles me and the abject don’t care attitude and total disinterest in how I have managed to get back from the brink. The assertion now that my PA xx was only suspected is like a slap in the face for still being alive and kicking!
Please swear for me - I have done quite a bit too between the tears!
I can empathise with some of what you're experiencing.
I have never found out what caused my B12 deficiency symptoms...tests for PA and Coeliac were negative.
I was never referred to a gastrologist despite years of IBS type symptoms.
Feeling like crying is a symptom of B12 deficiency....I had random fits of crying and at times I didn't know why I was crying.
Are you getting enough B12?
B12 deficiency can have a huge effect on mental health.
What are your folate levels like?
Folate deficiency can also affect mental health.
"I have just received a letter from my GP whose response is that my B12 is no longer low and I have no other markers of PA ie both intrinsic factor tests were negative and MCV is normal "
Have you considered writing a short letter to GP that outlines your concerns?
Although it may not change the diagnosis/treatment you receive, it should ensure that your concerns are on record. This could be useful if there is a need to make a formal complaint in future.
"So now the GP who told me I had Pernicious anaemia is back tracking "
Are you a PAS member?
PAS membership is separate to membership of this forum. There are three types.
It can sometimes be upsetting to read what's been written.
If people disagree with something in medical records, my understanding is that they can ask to have a note inserted in their records that says they disagree and giving their reasons why.
I think requests like that are probably best in writing. Keep copies.
Doctors do not have to change a diagnosis just because a patient disagrees with it. They do have to change factual mistakes such as wrong name/wrong address etc.
I'm not a health professional.
I could add a lot more but didn't want to overload you at moment.
Sleepy bunny, so you have a link to where you learnt the part about asking for a note to be inserted when you disagree? It's kind of a moot point in my case because the locum I have an issue with didn't write any notes at all following my 20 appointment with her (trying to find out if that in itself is a breach) but I have an ongoing complaint that I can reference. TIA!
Thank you for your hugs. Yes I am a PAS lifelong member, I joined the day of my diagnosis - or "suspected diagnosis" 🤣🤣🤣🤣
I also have access to my records too and I get print outs of everything - the only challenge is anything at the hospital which is more difficult to obtain but I will pursue.
I will be looking at the March 2024 NICE guidelines for GA/PA in the next few weeks and doing a forensic response - I am beginning to feel quite acidic!!
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