Over many years my wellbeing has deteriorated to the point where, if I was 95, I'd accept the exhaustion, muscle fatigue (I can hardly walk upstairs), mental confusion and constant pain, weakness and pins and needles in my hands. I'd say to myself I'd had a good innings and if I died tomorrow, well, that was only to be expected.
But I'm 47, a single parent and my livelihood is at serious risk (I'm self employed).
I've been tested for everything (at different points I've been treated for Graves' disease and anaemia) but the overall trajectory has been the same. I've recently found out that ALL of my symptoms tally with B12 deficiency. As soon as I had a blood test I slapped on 5000 mcg B12 patches, not weekly as recommended, but daily. At the end of the week my pins and needles were not so severe and my energy levels were raised.
I fully expected to get the blood results to see a serious B12 deficiency but the level was 275 (range 197-886). And parietal cell autoantibodies were negative. The GP says I'm not deficient and he can say 'with certainty' that I don't have PA. I don't believe this is correct.
I did say that the PA Society believes anything under 500 should be treated and that the antibody test was only 50% effective but he said, 'In that case we'd treat everyone.'
I can carry on with the patches myself but advice on how often etc would be appreciated. I know you can't overdose on B12 but the patches also contain 10 other B vitamins, and maybe you can overdose on those. Should I also supplement folic acid, which is 6.1 (range 4.6-18.7) for serum folate?
I really would appreciate some advice as if the neurological symptoms become permanent I love my livelihood. Thank you
Written by
oozlumbird
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Maybe if they did treat everyone for B12 then they wouldn't end up spending so much money throwing tablets at symptoms rather than causes ... with so many people claiming benefit because they are unable to work ... with treating so many people for permanent nerve damage and dementia that could have been reversed ...
Sorry about the arrogance and ignorance.
If you have decided to treat yourself - and as you say it seems to be working there are actually quite a lot of options open to you.
I'm assuming that you are based in the UK so can't get a prescription for injectible B12 - however it is possible to get B12 ampoules from outside the UK and self inject - it is also possible to source saline from outside the UK and mix with powdered methyl to make your own injections. As well as skin patches you could try sublingual sprays, tablets or nasal sprays. It is possible that hydroxo injections might not work as well for you as some people find that they respond better to methyl for the neurological symptoms, but you could try experimenting with forms and formats of delivery to find out which works best for you - I use a mixture of hydroxo and methyl as different symptoms respond better to different formats for me -
Best form of folate is from food - so look at your diet, if you haven't done so already - and try and switch to folate rich foods. If you have an absoprtion problem then that might be affecting the folate and other vitamins as well - vitamin D is another one to look out for. Upper recommended daily limit for folate is 800mcg in the UK but this is because of the effect in masking megoblastic anaemia and potentially delaying the detection of a B12 deficiency ... all rather a... about apex if you think it through but never mind ... don't know why medics just don't face head on that anaemia shouldn't be used as defining symptom of B12 and get their act together on all the other symptoms. There are possible links to epileptic fits and high doses of B9.
Anyway, this is my bible when it comes to supplementation with vitamins
Aim for upper half of the range with folate - in which case you are a bit low at the moment ... as you can get through quite a bit of folate metabolising the B12 you need to repair damage.
If you have anaemia then be a bit wary whilst you are starting on high doses of B12 as it can deplete potassium levels as well. A banana a day should, fingers crossed, keep the doctor away
Having said all that - please do bear in mind that there may be other things going on as symptoms of B12 have huge amounts of cross-over with other conditions such as thyroid, diabetes ....
Thank you so much Gambit62. I completely agree about 'treating everyone'!
It was the B6 that I was worried about... Do you have any idea of what 'too much' would be? Each patch contains 3mg of B6, which (when used correctly) would be weekly – although I don't know how much of that is actually absorbed. I've already been to an endocrinologist (privately), who doesn't think it's thyroid or diabetes – and he's one of the good guys who treats according to symptoms not numbers. He's happy to give me a trial of thyroxine or NDT, but wanted to see the blood test results first to see if there could be any other culprits. He asked for a cortisol test (I have had MASSIVE amounts of stress for many years, which I won't bore you with), and the GP agreed, but the lab didn't do it. I've had low ferritin in the last few years (down to 6), but it's now back to 50, although that's still lower than I'd like.
I guess what I really want to know is whether I should push the GP into giving me injections by waving the best practice guidelines in his face, and possibly p*ss him off (when actually he's usually very kind and helpful), or whether my B12 patches of 5000mcg a week may well be just as effective (or more so) than injections of 1000mcg every three months, once the loading dose is done with. The patches work out at just over £2 a week, so not earth shattering. He's suggested I go back in two months for another B12 test and to report on whether/how well my symptoms have improved. Scared about potential nerve damage to my hands, though, especially if it turns out not to be B12, so a 'wait and see' approach is unnerving, given than the damage can become irreversible within 6 months.
Self-injecting could be a possibility – do you think that's better than the patches? Not at all keen on mixing up my own, but I think I know where I can get the ampoules. Please message me if you have a good source, though – thank you!
Will certainly take your other advice re diet. Thank you so much for your help and support.
I think you need a two pronged attack here. Yes, go and wave the guidelines under your gp's nose and tell him to check with the BNF guidelines too, they SHOULD be on his desk in front of him. Tell him if he doesn't treat according to the guidelines, ie. symptoms rather than levels, then you will make a formal complaint. I would suggest to him too, that if he says 500 would mean him treating 'everybody' then he must be getting an awful lot of people through his door, all suffering from the same symptoms, (after all people don't go to doctors unless they DO have symptoms),and if they all have lebels at 500 then that in itself should be telling him something!
Secondly I think you need to look very closely at how to self treat. Supplementing in any manner will artificially increase levels (which is why gps should NEVER redo the ruddy test) of everything contained in it and yes B6 is one of those you need to pay close attention to. You are self employed so taking a sickie now and then is not on the cards for you. So, there are lots of ways you can get the necessary, goldpharma, apothoke.de, and others. All abroad but you can get dry in this country via oxfordbiosciences. You'll still need to get saline from abroad. However, you can get the needles etc here! Its bizarre, isnt it? Ferritin needs to be up around 80, folate at least 3/4 way towards top of range. Take 5 mg a day as B12 needs it to work properly. You have neuro symptoms so need to inject every other day, just as your gp would, if only he could READ!
Dont ignore the possibility of other diseases though, so if he offers to test you for other things then i would agree.
Google the "BCSH Cobalamin and Folate guidelines" These were updated in 2014 and your area's NHS should probably be following this. Have a look particularly at page 29 which is a diagnosis flowchart.
"And parietal cell autoantibodies were negative" this is an unreliable test for PA. Have you had an IFA (Intrinsic Factor Antibody) test? This can help to diagnose PA but it is also unreliable...you can test negative and still have PA. I believe this happened to the chair of the PAS.
There are other tests that may help to diagnose B12 deficiency or PA eg MMA, Homocysteine and Active B12 (Transcobalamin). The results would probably be compromised by the fact you are supplementing with B12. I personally wasted a lot of money on tests that were unreliable because I was supplementing B12.
I had the following symptoms at 408 or higher: Sudden anger, irrational fear, severe depression, uncontrollable mood swings, confusion and memory loss, tinnitus, shoulder and hip bumping furniture when walking, balance problems, tremor in hands/difficulty with fine tasks.
Once I got into the 300s I really started to have the clear neuropathy symptoms, fatigue, shortness of breath, loss of taste, etc etc. My psych symptoms got so bad I checked myself into a hospital for a week.
So it is possible.
I do have some complicating factors- recent surgical history, antibiotic use, undiagnosed prediabetes, intestinal bacterial overgrowth, celiac, Hashimoto's thyroiditis, malabsorption. So perhaps those things made me more susceptible.
Everyone is different in what they will tolerate. I think initial tests can guide you where to start supplementing but symptoms are important too. I'm still trying to figure that out. I was initially given too much sublingual methylfolate and methylcobalamin, and reacted very badly. Now I'm on 10 day injection of methylcobalamin but do relapse between doses.
I'm so sorry you are going through this stress when there is so much at stake - health and livelihood ! The GPs remark about treating everyone is shocking when not everyone has the serious neurological symptoms you have, which you already know need to be treated urgently according to BCSH and UKNEQAS guidelines as there is a short window of opportunity before they become irreversible.
The B12def. link already given above gives templates for writing to your doctor. You could add the summary of the BMJ research document below in case GP won't read the whole document. It sometimes helps to put things in writing as I'm told that worrying about being sued is often their priority.
On Page 4 of this document is also info on folic acid:
"If there is Noncomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord.
In patients with isolated vitamin B12 deficiency and anaemia, additional folic acid is recommended until vitamin B12 is replete to prevent subsequent folate deficiency after replenishment of B12 stores.
Iron deficiency can be treated with oral ferrous sulphate (or suitable alternative) 200mg three times daily with vitamin C supplementation."
"Anyway, the best treatment for vitamin B12 deficiency subjects is supplementation with vitamin B12 and not additional folic ".
I hope the suggestions by everyone above result in a better outcome.
PS. My family have good results supplementing injections with Jarrows methylcobalamin 5000 mcg sublingually, available from Amazon - good reviews for neurological symptoms
When I was diagnosed with P.A., my level was 250. So no, your G.P. is wrong in saying that 'with certainty, you don't have P.A.'! I had pretty much every symptom too, but was told that I couldn't have it because my level was 'normal'. I performed a 'sit in' at the G.P.'s surgery and didn't leave until further testing was agreed upon, which led to my diagnosis. My G.P. didn't even apologise when he was proved wrong!
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