I had a call from my GP yesterday.The haematologist has told him that I don’t have PA and to stop my injections. This is despite the fact that i I no longer drag my foot, have no pain in my feet, can balance better and reduced slurred speech. GP listened to what I said and read documents from this site but said he has to follow haematologist advice. He wants to refer me to a neurologist but since I am so much better I think they will say that there is no nerve problem either. Will mri show past damage if I am now healed?
I didn’t have an initial diagnosis because the first GP I saw refused to give me the MMA test and the lab refused to test for IF because pariatel antibodies test was negative. I have no clear diagnosis to point at. My serum b12 was 319 - I had unwittingly been taking oral supplements containing b12.
Is there a dr anywhere in the country that can help? GP said he doesn’t mind where he refers me to if it helps to get answers.
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Numbsew
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I think the haematologist needs a good kick up the backside to be honest! Given that the BCSH guidelines refer to IFAB-negative PA because it is so difficult to prove PA is the cause with the current test being so dodgy I'd really like to know how he can be so sure that you don't have PA.
As Pitney says your best bet is probably to contact the PAS directly (recommend you join if not a member first) and see if they can help with both the GP and the haemo - who really needs to read the guidelines properly before making daft pronouncements!
I have found Solgar Sublingual 1000ug very effective. If you don’t have PA perhaps try this and ensure that your diet is optimal - this is not a easy as you think and requires quite a lot of effort and planning but it’s great for your general health. I very much doubt most people have a balanced diet as I have looked into what a balanced diet is and sufficient amounts of vitamins and minerals are not achievable if you have the typical British beige diet. Eat red meat once a week, perhaps a bit of liver every 10 days, chicken, fish ( canned if you really don’t like fresh) , sunflower and pumpkin seeds and almonds and a few Brazil’s, lentils ( the lentils in pouches are an easy addition to your diet) canned beans ( can be mashed into potato or whizzed into soup) , Kale, asparagus, sprouts, garlic, onions ( caramelised are great with most meals) egg mashec with a little mayo is a great topping for baked potato, also eat sweet potato, squash, broccoli, blueberries, banana, mango, houmous, oranges, fortified oats like Flahavans organic, Oatley fortified oat milk, brown rice, quinoa ( the punches are fine) . These are just a few of the foods rich in B12, Folate, Iron, potassium that we need to be eating every day - doesn’t leave much room for pizza or pasta or sandwiches that is the British way of life which is leaving many undernourished! If you’re vegan/vegetarian or gluten and dairy free you have to make very sure that you have all nutrients covered because it’s tough enough if you’re not vegan. Hope this helps.
Thank you. I do eat a healthy b12 filled diet, so whatever I have is an absorption problem. I have a family history of P A too.
This recent article might help regarding sublingual supplements. They don’t rely on absorption in the gut. Great that you have the diet sorted. All the B vitamins and minerals that are in the foods I mentioned all work in tandem to help absorption but I understand that it’s just the B12 you don’t seem able to absorb. We have the same issue but the sublingual has been very helpful.
You mention absorption issues. Have these been tested officially.
It’s not the cheapest test but a comprehensive stool analysis was of huge benefit to me. It’s great to have vitamins and minerals sublingually, I had to have b12 and magnesium sulphate daily injections as my levels were 0. Yes they help but when I received my results I was shocked how bad they were.
To be fair it’s very easy to address low or no stomach acid. The same with probiotics levels. Candida was tough going but overall I am much better. You can eat all the right food and take supplements but if you don’t absorb them it is quite literally money down the drain. I was already gluten free at that time and had a great diet.
Having had a damaged nerve myself no there is no scan that I can think of that shows any improvement/change.
I agree being a pas member is a good idea. Do you have any up to date vitamin/ thyroid/ blood tests?
I found the Austin review article that was sent to you:
Quite interesting, since it seems to be promoting nasal and oral treatment for B12 deficiency.
Quite strange as well because it refers to Pernicious Anaemia as Biermer's Disease (and the more familiar PA was not used in reference search) and a new term for B12 deficiency introduced: FCM (Food-Cobalamin Malabsorption) -new to me at least ! Unaware of how this is different/ diagnosed/ presents itself.
Quite disturbing in that although there is an admission that "patients with... severe neurological deficits (sic) or..critically low blood levels of vitamin B12 should be treated with IM replacement", it then adds that "subsequently, patients may be able to convert to oral replacement with close monitoring" although in the previous sentence, it states that the effect in this group of patients has "not yet been adequately documented". Risky, then.
Glad "patient preference" gets a mention !
Also questionable is that macrocytosis is described in the report as "one of the main clinical manifestations of vitamin B12 deficiency" and listed in Table 1 under "frequent (haematological)". According to BCSH Guidelines (2014), neurological impairment occurs with a normal MCV (no macrocytosis) in 25 % of PA cases - and so absence of raised MCV cannot be used to exclude need for cobalamin testing.
There are studies mentioned -but the study groups seem very small and the length of observations short-term. Too small, too short to be mentioning "curative" in relation to such a serious condition. Take note when 2/10 patients had "only minor, if any, responses".... minor or none, I still wouldn't go there!
In UK, PCA test is not recommended as diagnostic test for PA, IFA Intrinsic factor Antibody test is preferred.
It's also possible to have PA even if Intrinsic Factor Antibody test result is negative (called Antibody Negative PA). Antibody Negative PA is mentioned in BSH Cobalamin and Folate Guidelines.
Realise this is a few months old and hope you have managed to find success and some answers. I also didn’t have a diagnosis of PA however self injecting has transformed my life.
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