Hi all, I was diagnosed with ME/CFS 6 years ago (my B12 was 104 at that time but never mentioned by my GP).
Over the last 3 years I've gradually felt worse, more exhausted, dizzy etc. In June this year Re-tested my bloods incl B12 & found it was so low they couldn't even give a proper reading. I had 5 loading shots, felt slightly better after a few weeks but then started feeling worse again. My grandma had PA so my GP tested IFA & PCA. They both came back negative so now my GP says not PA, just take oral b12 & retest in a year & prob CFS making me feel worse. I feel like I've been fobbed off but he says I'd be feeling better now if the injections were helping! Any thoughts? (I thought maybe I just need more)
Any advice what to do now please?
I know PA tests r unreliable so am wondering whether to pay Medichecks to rerun both tests!! Maybe get a positive & then can go back to GP? Any thoughts please?
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Bev11
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You may actually have to have the tests done several times before you get a result ... and even then there is no guarantee that it isn't actually another absorption problem.
What you need is to make sure that you are getting the treatment that you need. The fact that you felt better after the loading shots for a few weeks and then went down hill does imply that B12 is what you need.
CFS is just a label for a cluster of symptoms that could have a number of causes so key board is getting a real hammering as I feel annoyed that GPS are to stupid or too lazy to bother to think that through.
ME one potential cause of the symptoms grouped in CFS - B12 deficiency is another. There is evidence that implies high dose B12 can help patients who genuinely have ME (ie not necessarily a misdiagnosis) ... and the same is true for MS - though it doesn't help all.
1% of B12 is absorbed outside the ileum so high dose B12 orally can work for some who have absorption problems but it doesn't work for everyone.
Other possibilities for supplementation before you get to self injection include sublingual sprays and tablets (absorbed through membranes in mouth), nasal sprays (absorbed through membranes in the nasal cavities), skin patches. Nasal is likely to be a more effective way of delivering than sublingual and again those likely to be better than skin but people do respond in different ways. Self injection can be done IM or subQ and there isn't that much difference in how effective the two methods are. Assuming you are based in the UK you won't be able to get injectable B12 in the UK but you can source it from countries where it isn't covered by prescription only rules, such as Germany and France. There are a number of reputable on-line pharmacies that people use in Germany ... as well as amazon.de.
You need to keep an eye on folate levels and if you have anaemia, potassium can be a problem - though if you had loading shots without a problem then potassium is unlikely to be a factor going forward. If you don't have copies of your full blood test results then it would be good to get them to see what else is going on.
Given your B12 levels at the time when you were diagnosed with ME/CFS it does sound quite possible that you have been misdiagnosed. I presume that you have significant neurological problems and there is no guarantee that those can be helped.
Whilst you could try methyl in relation to the ME there is some evidence suggesting that hydroxo will do the business but you might need a bit more depending on some genetic factors that might affect your ability to convert hydroxo to methyl. Methyl helps me a little with some of the feeling in my left foot but it does nothing for my neuropsychiatric symptoms - for which hydroxo is much better.
Carry on reading - eg the pinned posts on the forum are good place to start.
You might also consider joining the PAS itself - pinned posts include links to their website - and they may be able to support you in an attempt to educate your GP
My grandma had PA so my GP tested IFA & PCA. They both came back negative so now my GP says not PA
The GP is making an erroneous conclusion. The anti-IF test is terribly inaccurate, giving false negatives 50% of the time. the anti-GPC test is so useless that the BCSH (British Committee on Standards in Haematology - Britain's biggest brains in blood) recommend it is no longer used.
Then return to your GP and ask what is causing your B12 deficiency. Don't be fobbed off with 'diet' unless you are vegan.
Highlight the bit in the BMJ that says
In irreversible cases, for example, pernicious anaemia, the treatment should be continued
for life. For temporary causes, such as pregnancy, the treatment can be reviewed when the patient is fully replete and the causative agent removed
Tell him that you'll be happy to stop treatment once he tells you what the 'causative agent' is and how to remove it.
Tell him that, in the absence of any temporary cause, you believe that the best treatment for the patient will be to assume it is a permanent cause and injections should continue for life.
Martyn Hooper, the chair of the PAS tested negative more than once with the IFA test before he tested negative.
He has written several books about PA and B12, the latest is
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which is up to date with current Uk B12 guidelines. I gave a copy to my GPs.
He also has an interesting blog., the latest post might be relevant as it mentions a family with more than one sufferer.
This above UK document came out in 2014 and I was told the NHS should be following it. Sadly some GPs may be unaware of its existence.
I found that some areas of the UK are following local NHS B12 guidelines, some local guidelines have not been updated since the BCSH Cobalamin guidelines came out. I gave a copy of this document to my GPs
Page 29 of the above document is a diagnosis flowchart that outlines the process a GP should follow with someone they suspect has b12 deficiency....again sadly this process is not always followed in my experience.
It is made clear in this document and the one linked to below that people who are symptomatic for B12 deficiency should be treated even if their B12 blood level is normal range in order to prevent neurological damage.
Thanks for all your replies, great info. I've joined the PAS & have got the 2 books (Martyn Hooper & Sally Pachalok) aswel as the links you've sent. Thanks all. My PA bloods were only taken 2 days after loading shots so I will pay for re-test privately & hope for a 'positive' & then will try supplementing myself (thanks for info) to hope for more improvement in symptoms. More ammunition if I can prove improvement. I will also do all my 'homework' & print off the info before I return to GP fully 'armed'. Will also take my dad with me for backup.
Really disappointed in my GP - when I started with him in June he was great. Did B12 test straight away, phoned day after with results & got 1st loading shot same day. HE told me that PA test was unreliable & said he'd give 3 monthly injections anyway because PA probable & if test negative would refer me to haematologist aswel. He was great until yest when he completely reversed everything he'd told me & totally dismissed me. My symptoms incl extreme fatigue, weakness, dizzy, loss of balance, forgetful, confused, intolerances but GP did a full neurological assessment (half hour app) & said symptoms due to CFS not B12 neuro. Wouldn't consider more injections at all (said not due to cost, but unnecessary & not enough resources at surgery!!).
Ok I've done ranting now!! Thanks for listening & for all your great help & info 😀
Pleased to hear that you have someone supportive to take with you, might be good if they read up about B12 deficiency/PA as well.
I'd recommend reading fbirder summary of mainly UK docuemnts, a link to summary is in second pinned post. There are a lot of useful quotes that can help to refute some of the misunderstandings some GPs have about B12 deficiency.
"he'd give 3 monthly injections anyway because PA probable & if test negative "
Page 29 in the BCSH Cobalamin and Folate Guidelines mentions Antibody Negative PA. It is made clear that even if IFA test is negative it is still possible to have PA.
"& said symptoms due to CFS "
So many on this forum have had a diagnosis of ME/CFWS/fibro at some point.
Link about writing to GP if unhappy with treatment etc.
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