Have written before about my low active B12 results(medichecks). Latest one had been 36.7 (37.5~188). My previous 3 were slowly dropping from 60s to 50s to 40s. Advised to do MMA by medichecks.
Eventually afforded one last week which came back high 38.5 (<32). They are now suggesting I do an intrinsic factor. Previous one about 5 yrs ago was negative. I’m aware only 70% can be positive but wonder if this is worth repeating? Gp had asked hospital to do an MMA but this was refused.
Still awaiting response from GP from latest private MMA. They are aware of my symptoms and declining B12 levels. My serum B12 done through GP last yr was ?420 so no action taken.
I have hashimotos and a very strong family history of PA.
I’m aware I can self inject… just would rather an actual diagnosis.
My fingertips tingle/severe brain fog/fatigue etc.
GP makes me feel like I’m a hypochondriac.
Any advice please?
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Pomart
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I can see you have posted for 7 years and still not getting much progress. The PA Society has provided statistics on how many people had diagnostic delays of 10 years. Sorry to read how your GP makes you feel. { Raspberry blow is the attitude }.
Hashimoto’s disease and PA go hand in hand. Plus, you have a family history of PA. I will read through your old posts. So, I can get a better idea of what has happened.
You are aware of the bureaucracy of CCG’s and Trusts. So :-
1) They are businesses. Have Chief Executives and boards of executives.
2) They have their own policies, procedures and algorithms. So, even if you had a medichecks test a GP Partner synonymous with business partner can ignore it. (We did not order it, it is not from our laboratories). Meanwhile a patient is spending their own money.
So, question, do you carry on spending more money on medichecks tests ? I noted the price of an MMA test or would you spend that money on a private GP. They are more inclined to look at what you already have in private blood results, family history, your symptoms and administer your first Hydroxycobalamin injection.
They obviously will write private medical notes and that piece of paper by Dr X with a GMC Reference Number : at time and date. This is your diagnosis.
Cobalt1312 recently posted about the Patient Revolution. Health Care is an Industry. Just as an example, how is a lingerie and fake tan business woman involved in buying defective PPE for Frontline NHS Staff during COVID ?
Thanks for reply! I know.. difficult to know what to do.. Yes.. did speak to a private GP who was more than willing to prescribe B12 injections but wouldn’t ‘give a diagnosis’ so at £40 per injection, seeing as I probably need loading injections..this is not really a road I want to go down. I know my GP might well just prescribe tablets but think it’s injections I need. I eat a very good diet so know this is not the cause. Soo frustrating!
I have Hashitmotos, my mum had PA. My active B12 was 28.6 borderline deficient. I did an MMA urine test with a high result.
I got my GP to test total B12 which was 444 but I asked that she also test for IFAB. GP ordered an Autoimmune Antibody test which included IFAB and stomach Parietal Cell ab which produce intrinsic factor to take up B12. I was negative for IFAB but positive for Antibodies to Parietal Cells. However, it was written off as no action required because of the IFAB result. Unfortunately the NHS don't appear to recognise active B12 tests and won't do MMA tests. However, the guidelines on B12 deficiency are due to change and hopefully will be published on the 6th March, fingers crossed, so it "should" be easier to get tested on the NHS for a B12 deficiency assuming GPs follow the new guidelines that is!!
Thanks! Did hear the guidelines were to change. Just think they will push for tablets which I think are not going to help as diet good but who knows. That’s awful for you too as intrinsic factor is not always positive in a lot of cases. I think guidelines at the minute say test MMA which they couldn’t do so goodness knows. Soo annoying as B12 injections are very inexpensive for NHS compared to a lot of medications. We’ll have to wait till the 6th!! Wishing you all the best.
The hoops you have to go through to get a test let alone anything else. I also have a good B12 and Folate diet but was deficient for the latter end of 2022 and was quite unwell, if truth known I bet my Active B12 was rock bottom as well then. Since then I have never really been right and spent 2023 having loads of tests etc, mostly privately I have to say. Long story, my profile gives an indication.
I am going to ask for a SIBO/Hydrogen test just in case bacterial overgrowth has anything to do with not absorbing B12 at cellular level. Process of elimination. If doctors offer B12 oral treatment that is a waste of time if you have good B12 diet. They need to find out why you are not absorbing B12 first. If my GP offers me tablets I'll refuse as that will skew getting a proper diagnosis as far as I understand.
I am in process of changing my GP to see if a different surgery has different views on the subject with new guidelines, hopefully, as a back up.
The SIBO test is a good idea… I hope you have more luck with that though I imagine that might be hard. Yes .. I agree.. trying to get a diagnosis as I feel oral will be not enough.
I am going to try getting a SIBO test and also as mentioned on here a Gastrin serum test. My Endocrinologist has suggested I should see a Gastroenterologist as she says there is no point in taking b12 supplements as you are clearly not absorbing it!! I'll post on here with any updates. I am quite adamant that I don't intend to become ill again through lack of care and attention from the GP, that's in my experience! Others will differ of course.
The longer you go with B12 deficiency, the harder it is to treat. Hence, I suggest you start self-injecting ASAP as your results and symptoms are clearly of B12 deficiency.
Orals do work in all cases. However, if the natural absorption mechanism is impaired, you need to take high-dose one's. At least 1000mcg so that about 1% goes into the bloodstream via passive absorption. In my experience, cyanocobalamin is better but takes some time to really kick-in (like a 2-4 months). If you can't get a shot for whatever reason, do go with the 1000-2000mcg/day tablet. Don't take more than this, as it doesn't help. I may also mention that I found some brands to work while some others didn't, so try to get a good brand oral.
Thank you am111 for reinforcing the longer you go with B12 deficiency, the harder it is to treat. Hence, I suggest you start self-injecting ASAP as your results and symptoms are clearly of B12 deficiency.
I feel it apt that Pomart realise that PA/B12D can result in Subacute combined degeneration of the spinal cord.
My personal diagnostic delay is 31 years and am permanently disabled as a consequence. In a recent telephone appointment with a Health Professional, they assumed my frequency of Hydroxycobalamin was every 3 months. I replied that I have a deal with my GP.
I just wrote to my GP, this is what I am doing. Another doctor did not like me using the word misdiagnoses. Both they and I knew that it is negligence.
Yes.. I understand the complications if not treated… just aware that if tablets fail.. I will be unable to prove deficiency it out stopping everything again for months. Will see if GP will treat with my MMA high now. I also did an ancestry test out of curiosity and seem to have a. MTHFR gene.
Ghosh Narwhal10 sorry to hear your diagnostic delay was 31 years !!!! That is shocking.
My mum had a delay of 1 year before being diagnosed with PA, the GP kept fobbing her off with tonics etc for tiredness. We are going back quite a few years. It wasn't until she became so ill and didn't even have the strength to lift her arm to comb her hair that my dear dad had to intervene on her behalf and she finally got diagnosed.
I did say to my GP after she quoted "we must follow NICE guidelines" I replied "and some of those Guidelines keep patients ill" !!!!!
She was ok once she started receiving B12 injections for the rest of her life. Sadly she is no longer with us, nothing to do with PA, but it made such a difference when she got the treatment she needed!!!!
If a genetic metabolic flaw, one detectable in DNA tests, prevents B12 from reaching cells and tissues, the report from the Inherited Metabolic Diseases consultant to the patient's GP would be to administer B12 injections twice a week for life.
To their utter dismay, this advice is occasionally ignored, the patient then deteriorates and a return to Metabolics proves necessary.
Hi Pomart, I totally understand that you want a diagnosis and keep going but also think about yourself.
Both myself and my daughter went down extremely fast neurologically and we are both recovering from many many years of being deficient - it is hard going even 9 months after injections - we were both considered ok on our serum B12 with family history of PA and HT.
My son was also deficient of Active B12 but not serum - and he started injections after an exceptional practitioner said to try B12 - as he is autistic it is hard to fully know symptoms. It has been life changing for him - apart from his hair not going grey anymore, and for the first time in his life not having a mouth full of ulcers - he feels totally different and in 9 months I have has the absolute pleasure of seeing his life totally change.
GP's are under so much pressure to save money - I believe it can 'cloud' judgement.
So many times I regret trying to get our GP to listen and wish we had taken action sooner.
That is wonderful to read about your son. Sorry to read of your daughter and yourself rapidly deteriorating and hope you are managing now. Plus, more improvements on your journeys.
All of us have our stories to tell. The NHS got slammed by COVID. Financially, Primary Care (GP Partnerships) are struggling to recover. If you actually understand and listen to them, they are concerned about paying their administrative staff. This is the crux of the problem. There is one particular GP who has been in their profession for 35 years. They merely state a 4 letter word and reference the 2 party political system.
I agree.. GPs are soo aware of costs sometimes to the detriment of care. I am hoping that they will look at my results next week and start treatment. I feel if my diet is good… which it is.. that the tablets won’t work. I’m glad you are all improving with the B12.
Hi Pomart, Yes, IFaB test is absolutely worth repeating. My IFaB did not pop up positive until mid 2023, three years into my journey. To clarify, everyone with PA/AIG has these antibodies along with Parietal Cell antibodies PCaB. In the case of the IFaB test...the sensitivity of the test is purposefully adjusted down to eliminate false positives. This makes a positive result highly specific to PA. As PA disease progresses the IFaB will increase over time until they peak. That is when they are most likely positive on IFaB test. Then once all Parietal Cells are destroyed the IFaB will diminish and again will no longer show up on the IFaB test. This is similar to how your immune system responds to a virus. High levels of antibodies until the virus is destroyed then the antibody level is much reduced but remains in the background forever watching for that virus again. Same as a vaccine needing a booster periodically.
Although PCaB is not so specific by itself, if you run a PCaB and a serum Gastrin test and results are: PCaB is positive and Serum Gastrin is high (above normal), then that too is diagnostic for PA. Especially when considering B12 def symptoms and family history of PA as it is known to be hereditary. If you're in UK a NHS GP may not run these tests but maybe consider having them done privately.
Thanks very much for this. Was struggling to see info on whether IF bloods might turn positive so this explains it very well thanks. I think I will go ahead and at least test these myself. Yes… NICE suggested testing MMA which was refused. Maybe I might have more luck with the guideline change whatever that will be.
The negative side of guidelines is it allows doctors to be lazy and not have to think critically. The guidelines are only as good as the people, committees, doctors, etc.who put them together.
My IFA test came back negative. GP has agreed to check parietal cell ab. He has referred me to gastro. This will probably be a few years wait so I may have to go private. He has agreed to a trial of B12. One injection every 3 months. 🙄. He repeated my serum B12 which came back 450ish. My private active B12 remains in the 30’s. So frustrating as MMA is raised. My folate was 3.7. Only know this as asked for printout of results. They didn’t suggest I supplement with folic acid despite low folate and giving me 1st injection. I’m taking these myself. Know a low folate can scew/mask B12 but now I’ve had an infection, I’ll never know🤷♀️. Feeling worse with supplementing folic so feel my B12 maybe is dropping a bit?! If parietal cell comes back post, GP said he will treat accordingly.
As is widely known, "the clinical picture is the most important factor in assessing the significance of results of blood tests assessing cobalamin (B12) status because there is no “gold standard” test to define deficiency." (ncbi.nlm.nih.gov/pmc/articl....
A notable quote from the same article:
"Self-administration of intramuscular B12 injections can lead to greater patient satisfaction and better health outcomes."
So I agree with others who suggest self injection of B12.
You might consider printing out the following article (same first author as the article referenced above) from a medical journal and providing it to the doctor.
"The Many Faces of Cobalamin (Vitamin B12) Deficiency"
The article was published in the Mayo Clinic Proceedings, a peer-reviewed medical journal.
This particular article:
* contains a listing of things commonly misunderstood by doctors
* Contains a description of treatment for B12 deficiency with neurological symptoms
* contains description of procedure doctors should follow when symptoms indicate B12 deficiency, but the doctor is unsure (two-three month trial run of B12 injections weekly or twice a week, and why wouldn't a person choose twice a week when the goal is to see if there is improvement with treatment, rather than improvement with under treatment)
* etc
So, while tests can be helpful in some instances of B12 deficiency, the clinical picture (the symptoms the patient is experiencing) is the most important factor. Therefore it is foolish to continue chasing tests in an attempt to get a definitive diagnosis, because , with relatively rare exceptions, tests cannot provide definitive diagnosis. But doctors don't like having to make clinical diagnoses, so they chase test results and fail to make the clinical diagnoses.
As is described in "The Many Faces of Cobalamin (vitamin B12) Deficiency", in cases where symptoms indicate B12 deficiency but test results are ambiguous, the proper course of action is to prescribe B12 injections over two or three months to see whether there is improvement in symptoms. Since the purpose is to determine whether adequate B12 treatment is beneficial, and since no research results indicate how much B12 constitutes sufficient treatment, I personally feel that a minimum of two injections per week, but preferably injections every other day, be chosen as the level of treatment. The reason is that no level of B12 is toxic (though side effects, primarily dermatologic, are possible), and therefore there is no reason to risk under treatment during the test period.
Thanks for this info wiseGuy. I did get to finally speak to GP. He eventually said he could put me on oral. My diet is very healthy. I told him I was worried i wouldn’t absorb it. Told him I’ve arranged an IFA test myself. He eventually said I could trial 2/3 month injections admitted he wouldn’t give me loading doses as there was no “availability for nurses” even though I explained my symptoms. I will see if IFA is positive… which he said was the only way I would get loading doses and a diagnosis. Frustrating to say the least. Below cutoff active B12 and a high MMA just not enough🤷🏼♀️😔
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