Hello everyone …I’m so pleased I found this page …Sorry if this is too much ..but Im Thinking to introduce myself I need to write some of my life (first time on a forum ), I have always been extremely active only way I can explain is I will find something to do rather than not, in every aspect of my life …
having episodes of ibs not a diagnosed type and lots of health problems restless legs unexplained itching , one time when I was 30yrs struggling to walk for two weeks ,endoscopies few times through my life they found hiatus hernia and I even had a 2 week isolation stay in hospital when I was approx 6years old no formal diagnosis it was explained as issues with stomach …numerous tests started again 8-10 yrs ago after episode of iron deficiency anemia I struggled swallowing i lost rapid weight over a month and climbing stairs extremely difficult with palpitations and breathlessness and after another endoscopy diagnosis (there words) it must have been a virus …went on to have full hysterectomy approx 5yrs ago .. and I brushed lots of my health problems off with maybe it’s the menopause then in 2023-24 I was officially diagnosed with osteoarthritis fibromyalgia and fnd from different nhs specialists .
In recent years walking is difficult as is lifting heavier items,memory ,ibs type and numerous problems daily tasks are some days beyond difficult, I have energy at most for two days then 5 days recovery but it’s defo getting less energy and more recovery as time is going by … recently my palpitations are turning to thudding in my chest from exertion.. I feel I put all my trust into the nhs but I’m doubting things as two very close female relatives have been previously diagnosed pernicious anaemia and they need b12 injections plus 2 other family members b12 injections every 12 weeks for a different reason
.I got a appointment and told him of the family connection to PA which I have mentioned on a previous time to a different doctor so for this reason has added these tests IFA a few others I can’t remember all names but he’s wrote homocystiene test which he said would take longer to receive back .my blood pressure was high even though I take meds for this and I had a abnormal pulse which has also been mentioned before so I am having a ecg aswell …results are starting to come back a few bloods mostly normal a few abnormal and no action but the IFA has come back abnormal on patient access result but satisfactory no action at doctors on N.H.S. …I been feeling really upset because it’s feeling that he is choosing my result to fit my already diagnosed health problems rather than what is happening to me …so this is how i found this great place to write and I have told myself to wait for rest of results …thankyou so much if you spent your time reading this i really appreciate it as even with the love and kindness of my family I am finding this really hard…and wondering if any of my concerns are same as others
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Dislancas69
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It's very tough when you're trying to find your way through all these issues and your energy is deteriorating. So your IFA showed as positive/abnormal? Patient access can only show the same results your GP would see, so perhaps print them and remind your GP that negative results can be wrong about 50% of the time (meaning many of us never get a proper PA diagnosis) but positive results are highly specific, ie hardly ever wrong. Especially not with your symptoms and strong family history!
I’m navigating around this forum and it’s beyond interesting and lots of this is inspiring me to dig deep and I’m going to be educating myself on everything … thankyou for your kind and informative reply
You will get the best information from the lovely, supportive people here. It's helped me immeasurably in the last year since I was diagnosed and I'm very grateful - I learn something every day.
I am really sorry that you are feeling so unwell . I can understand your sadness and your questioning of the NHS . I think it is very significant that close relatives of yours have P.A. Your father included . There are DEFINITELY genetic links when it comes to P.A.
As you have had a an “ abnormal “ Intrinsic Factor Antibody test , action should have been taken . IMPORTANT !!! Ask for a print out of that test . You need to know the result . You are legally entitled to have it . In 2014 I did not know this , which led to a long delay in getting my diagnosis of Pernicious Anaemia. ( Resulted in a symptom becoming irreversible because of delayed treatment )” Abnormal” can be interpreted as negative which really means you definitely have Pernicious Anaemia. You need treatment with B12 injections ASAP .
Pernicious Anaemia is an autoimmune condition . Autoimmune conditions seldom come alone . There are over 100 autoimmune conditions . A very common “ companion” with P.A. is thyroid , Hashimoto’s , rheumatoid arthritis, . etc . So it is possible that some of your symptoms are connected to another autoimmune condition . I have 3 autoimmune conditions . P.A. , rheumatoid Arthritis and Vitiligo .
Do look up the latest NICE guide lines for the treatment of B12 deficiency in the over 18s In that report , Pernicious Anaemia is called Autoimmune Gastritis for some reason .
When I hear you mention palpitations, I’m reminded how I had them and they were dismissed , prior to my getting the diagnosis of P.A. ( had to find a private doctor !) Since having adequate treatment with B12 injections, in 2014 , I’ve not had one episode of palpitations! Before treatment my homocysteine was 15 umol/L — very poor . Some weeks after commencement of correct treatment, it was 5 umol/L — good result . Just a result of adequate B12 injections .
After loading doses of vitamin B12 , which should be 6 injections over 2 weeks ( only 5 here in Gloucestershire ) I was only allowed 1 injection every 3 months , which was not enough to keep symptoms at bay . I have been forced to self- inject . — Once a week . We are all different and require different frequencies to keep well .
Members on this forum are obliged to self inject,as you might have have gathered .
I urge you to get a print -out of your IFAB test . About 50% of P.A. Patients get a negative result , unfortunately for them , as then their G.P. will assume that they don’t have P.A, Symptoms are the main criteria for diagnosis , not tests .
. I’m afraid that the medical profession is mostly ignorant about B12 deficiency/ Pernicious Anaemia. P.A. is the most common reason for B12 deficiency. As a P.A. patient you will require B12 injections FOR LIFE. P.A. is incurable. The regularity required varies from patient to patient . Doctors use all sorts of excuses to deny patients injections , saying that oral tablets are sufficient. ( they don’t want to have to employ extra nurses ) If you really have P.A. this is not true . Injections are the only answer . One extremely lucky fact is that B12 cannot be overdosed , unlike most vitamins and minerals! My GP Said that too much b12 was TOXIC .This is totally untrue . It is never toxic . Hairdressers and beauty parlours are allowed to inject it as long as it is for BEAUTY purposes , not medicinal!! Can you believe it ? As much as they like. ! Well that is a fact . I’m getting carried away because I am so incensed at what is happening many to P.A. patients . There are a couple of. doctors who have made B12 deficiency a specialty. Cannot mention names on here .
Bear in mind that a blood serum B12 test result can be misleading because it contains inactive B12 which cannot be used by the body . An active B12 test is more accurate .
forgot to mention that P.A. can cause something like IBS because of lack of Stomach acid . It allows bad bacteria to proliferate in the stomach causing pain , bloating . I had this also . Completely gone now that I get the b12 injections that I need , plus I take home made traditional kefir every day . You can use other probiotic food , yoghurt, sauerkraut kinmchi or try probiotic capsules . This combined with correct B12 injections has seen off my stomach pains ! Yes as a P.A. patient you have Achlorhydria ( no stomach acid ) or Hypochlorhydria ( low stomach acid ) due to the destruction of the parietal cells by the Antibodies in the stomach which also destroys the Intrinsic Factor .
The intrinsic Factor is crucial to the absorption of B12 . But stomach acid also plays a part with b12 and other vitamins and minerals absorption.
so sorry you are going through such a lot and feeling sad , never give up trying to find answers and help and I wish you all best wishes and good luck on your journey
Some links I post may have details that could be upsetting to read so you may want to have a supportive friend or family member look at the info with you.
If you're struggling to get adequate treatment for B12 deficiency, I can post links to other threads where I left useful info. Just let me know if you want me to post them.
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Thanku everyone for your kind replies…..ur all a inspiration to me ….so many people are suffering it actually seems beyond nuts ..I’ve read and listened to so many things over a short time …dr andrew klein being one he’s inspirational …..so sad that people who should be listening and paying attention even helping are sweeping b12 deficiency under a carpet ….like it’s a thorn in there side ….not just b12 …the whole system of not bothering with true diagnoses just being told things to keep us happy and hope we go away …and sad to say in some cases it’s (go home n die quietly) ……meanwhile people are becoming literally disabled ..this could and should change …shocking absolutely shocking …as u probably can tell I’ve got a bee in my bonnet …
I first went to the GP with extreme tiredness (exhaustion), lower back/left groin /left hip pain and daily diarrhoea. It took a lot of time and testing to find out that I had B12 deficiency. Firstly, under the two-week pathway, bowel cancer was ruled out. I hadn't even thought of that. But neither had I thought of B12 deficiency - I didn't even know there was a B12, back then !
Getting any better was slow work, and certainly a struggle to try and fit into the expected recovery. I didn't feel anything from the 6 loading injections, and got much worse with the 3-monthly maintenance injections after that. I remember sleeping a lot - sometimes 14-15 hours and sudden afternoon crashes on the sofa - and I remember having to concentrate really hard to get back up the hill after shopping : left leg, right leg ... and crying, at the same time gritting my teeth with stubborn determination. There was nothing happening in my life that I would have wanted to maintain at all !
I was disappearing.
I was not depressed, although I was offered antidepressants three times. I was too tired to feel much beyond confusion and sensory overwhelm. The only way that I could see to get through was to keep going back to my GP for help, and to get as much advice as I could from the people here on the forum. I'd find out what tests to ask for next, what research papers were useful, whether all these weird symptoms were normal for B12 deficiency. And so much more.
Kindness being the most important.
In my case, functional B12 deficiency was stopping me from making progress. My GP diagnosed this after requesting an MMA test - which was raised despite the injections I was getting. These injections were then increased to 2 a week - and this started to work.
I now self inject at this frequency and have done for over 7 years. I wouldn't say I was back to my "old self" exactly - but I am never going to have to live through that awful experience again !
Do not mistake a cluster of syndromes for a diagnosis. Do not accept a usual treatment regime if it does not work for you. Be a medical disappointment if you have to, be a doctor's nuisance if you are forced into that role - but get recognition of the exact medical condition that is stopping you from having the best future quality of life possible.
You matter:
Get IFab tested - remind the GP that the antibodies to Intrinsic Factor need to be active during the test for a positive result. If they aren't, then you will return a negative result. This means that you could still have PA. Martyn Hooper, founder of the Pernicious Anaemia Society, had to have three tests before getting a positive result. If you already have tested positive: keep a copy of this result, or as Nackapan would tell you, frame it ! You do NOT need further proof, as this is 95% accurate and PA is a lifelong condition with no cure. BUT it can be managed effectively to reduce, diminish or even disappear symptoms with B12 injections.
Get a 24hr heart monitor test. Eliminate any possible concerns about your heart.
You had an endoscopy - did you have a colonoscopy too ?
Get your folate, ferritin, vitamin D, thyroid regularly tested, monitored.
The B12 levels, once correct treatment has started, are likely to remain high - and so testing then becomes pointless. Retesting has also been used to stop further injections, with patients being told they no longer need them, as B12 level is high. This is wrong.
Get MMA tested. High serum methylmalonic acid results can indicate B12 deficiency, renal problems or SIBO. Renal issues can be eliminated as cause easily with a blood test, SIBO can require a fasting series of breath tests and would take 3 or 4 hours to complete and chart for elimination. Small intestine bacterial overgrowth is treatable (with difficulty) and meanwhile, the bacteria can rob the host of vitamins including B12.
It sounds like you also have other health issues to cope with, but PA seems a possible, especially given family history. Not easy to diagnose, but difficult to rule out so far. Symptoms could fit, syndromes seem apt. Worth testing. Autoimmune conditions are often plural !
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