So Like many of us, I SI, couldn't get GP to listen to my concerns about symptoms my first serum B12 result was 354 I think, so he said normal , but we know different don't we. I have told them I SI, and he nearly fainted, especially when he saw a high result for B12. Tried to tell me it was dangerous. Now I had lots of neuro symptoms, numbness , tingling, pain, brain fog, to the point I thought I had early onset dementia. Did have nerve conduction tests for arms/hands which showed very severe compression of median nerves , Operated on both hands (not at same time) , surgeon said afterwards I can help with this but it will not fix the arthritis. So I am rambling again, I know its hard to get a PA diagnosis, but what tests might confirm that. What tests might confirm RA, I have Raised CPR and Ferritin is now over 200, 216 I think. Are there tests I could do privately that might help clarify what's going on. I am also hypothyroid, now self treating T3, as appear to be a poor T4 to T3 converter so need to try and see if I can test that too.
So what tests for PA,,, what tests for RA, what tests for poor conversion, Help or clarity appreciated as always you wonderful people
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Was a noticeable improvement . At first things felt worse, then I think, after couple of months, not completely gone, but getting better. then Doc scares you a bit so think , I'll leave longer between doses, that was not a great idea, longer than couple of weeks felt crappy again. my vit D took a long time to get better and folate took forever to get into double figures. Hypothyroid too, couple months ago stated taking T3, it seems to helping , 8 weeks of T3 and cholesterol down from 5.6 to 4.49 silver linings . Was wondering about testing for dodgy genes, think my Mum has been very generous and passed on some nice auto immune stuff
And the British Committee for Standards in Haematology diagnostic & treatment flowchart stichtingb12tekort.nl/engli... Note the bit "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
There is always self-treatment like I did. All my tests were normal yet I had severe neurological symptoms. Not the preferred approach of course, since it doesn't get on your medical record. I'm still hoping to get a positive IFAB test on of these days, though so far 4 have been negative... and still on 2x daily injections with plenty of folic acid.
I am not familiar with RA testing, sorry.
T4-T3 conversion can be seen from a FT4 and FT3 test done together at the same time. First thing in the morning, last levo 24 hours before the test (take morning levo after test). Private test from TUK site: thyroiduk.org/help-and-supp...
just hoping to get some proof of issues if I can, lots of the symptoms problems I have been reporting to GP for years, then today checking on my GP , they seem to of added more info, referral letters reponses ect, have seen that a Doctor who diagnosed my ADHD/ASD who I knew was also concerned about my being severely depressed and anxious has also labelled me as having "somatic syndrome" because after all I was euthyroid on meds. So just another mad woman making up physical symptoms , no wonder my GP ignores me
Good luck. It can be difficult to find the proof, unfortunately.
Add me to the list of mad women ignored by doctors The number of time i've been 'offered' prozac, xanax... i need more hands to count them all. I have no good answers, i'm sorry.
I've recently been diagnosed (finally!) After months and months of insisting I'm severely b12 deficient and completely gaslight by every doctor. A hematologist even said my symptoms are not b12 deficiency. Such rubbish. Anyway my endoscopy showed atrophy of the stomach which signals b12 deficiency. So that is finally a big win. I would push for an endoscopy especially with your stomach issues.
You may be able to get a gastrin test. This is quite a new test but does seem to be more sensitive than IFAB in diagnosing PA as a specific cause of B12 deficiency
The important tests are active B12, homocysteine and MMA (methylmalonic acid). MMA is the most specific to B12 deficiency. Serum B12 is not always representative. If injections are helping, you should just continue. Follow a pattern, i.e. once a week etc. or once every two weeks etc. whatever suits you.
Yes , think I might try and do 2 a week for a while, everything is sore, everything is hurting. Could just been everything waking up again or could be RA, Fibro whatever , I was doing well on 2 a week but GP scared me off a bit, that won't happen again. I want to know for my peace of mind, what drives me most is I have children , mostly they would be classed as vulnerable because of ND, professionals don't listen to ND people, and conflate their difference to them being less than. I want to know if I have autoimmune issues so we can identify if we need to check them, I can excel at being a pain when I need to
I have been self injecting B12 for six years now - starting with every other day (EOD) then after about two years, reducing to two a week. The reason I opted for this frequency was that I had two B12 injections a week from my surgery for six months - and it worked in keeping my symptoms under control, most of the time. I had had my folate, ferritin, vitamin D and thyroid monitored regularly by my GP as all were affected.
I have prescribed vitamin D and Raloxifene, as I have osteoporosis of the spine - which has been reduced now to osteopenia.
I had been diagnosed with functional B12 deficiency by my GP in 2016, after she found B12 deficiency - but found me unresponsive to the usual B12 injection regime and in fact was getting worse. On checking my MMA, she found it to be still raised despite the injections - which is what gave me the confirmed diagnosis, as she suspected, and the treatment frequency was recommended by consultants she contacted.
MMA is not that easy to get at primary care level. She had to try three hospitals before she found one that would do the test. MMA ordinarily would form a link to the injected B12 to enable it to be of use at cell/tissue level. If there is a connection problem, both can build up in bloodstream. This is functional B12 deficiency and generally treated with frequent B12. It isn't common: my GP remembered the MMA test from treating her last functional B12 patient 10 years previously.
MMA, if high/raised, will only tell you that you have either B12 deficiency (if B12 low) or functional B12 deficiency (if B12 high) if other causes are ruled out:
renal problems : blood test
small intestine bacterial overgrowth (SIBO) : fasting Lactulose breath test series
SIBO are bacteria that can feed on B12 and other vitamins, robbing you of several nutrients. Treatment is usually courses of antibiotics - it can be difficult to get rid of, may need antibiotics altered each time as bacteria get immune to them and then there is the added problem of some antibiotics reducing B12 !
My immediate family has several autoimmune conditions: Grave's disease, vitiligo, psoriasis. My sisters' children are all neurodiverse and some have other issues too. One of them has B12 deficiency as well.
I have been given three negative Intrinsic Factor antibody (IFab) tests to date to my knowledge. Although I am aware that a positive result is only 50% likely in a person with PA, I don't think that pernicious anaemia is my problem.
I was very lucky to find a GP able to look further.
No reason to be scared, as B12 is not toxic, although I do find it habit-forming and any reduction in the dose or frequency leads to B12 deficiency symptoms. I also made the mistake of stopping my B12 tablets on a high B12 serum test. Led to lot of problems. Just do what suits you and you find working. Twice a week or even once a week should generally work fine and give you good results. (I lean on the side of the lowest dose that works.) Just don't change the frequency and be regular, i.e. twice a week means every 24*3.5 hrs, not one after 3 days and one after 4 days etc.
I've no idea about the RA, but for PA testing is pointless except for your own information. If you are injecting your levels will be high. If not there's something wrong. In fact, looking at your figures, I'd say they are very low. A few months ago I had myself tested. Result was 1750. I tried a lower frequency of injection and it only went down to 850.
I have also read that a pepsinogen test may be useful but as far as I know is not widely available. Search online for "pernicious anaemia pepsinogen test".
Next link outlines when NHS patients with B12 deficiency should be referred to
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The number of time i've been 'offered' prozac, xanax... i need more hands to count them all. I have no good answers, i'm sorry. 
Testing for Intrinsic Factor - borderline results 
Tests for B12d?
Visit to hematologist for pernicious anemia
Still fighting for a diagnosis B12, PA 
Full blood count results.
