Hi, I've been reading, and seeing, a lot about the dangers of aluminium in vaccinations and it occurred to me that it might also be in the Hydroxocobalamin injections the doc gives me every month. I have these for Trigeminal Neuralgia, which is caused by neurological damage. It would be a deep irony if I was taking on aluminium every time, since it is implicated in neurological damage!
I've had a look at the leaflet inside and it doesn't list aluminium but I'm not entirely sure whether they would, or have to, list it! Does anyone know if the NHS injections are aluminium free or not? It's made by Rotexmedica for Auden Mckenzie pharma.
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Chancery
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just a quick comment - trigeminal neuralgia can be a symptom of B12 deficency...and if you have B12 deficeny you may also develop other deficiencies...prime examples are iron, vitamin D and folate (folate and B12 work together so if folate is low, the body can't absorb B12 properly).
So...if you start to feel unwell or suffer what appear to be the symptoms of B12 deficency (lots of cross-over between these and the symptoms of other deficiencies), might be worth asking your GP to check your levels, as above.
If you're not sure what the symptoms of B12 deficency are, there's a symptoms check list in the second PAS pinned post (to the right of this page or at the bottom if using a phone - might be surprised to find that you have some - or have in the past, without realising it).
Good luck and post again if you need any more help or advice 👍
Thank you , Foggy, that puts my mind at rest, especially as I had an injection today! I definitely have some problem metabolising B12 (or did before injections) because they 'cured' my TN (it's never truly cured, being incurable!), but I also discovered recently that Restless Leg Syndrome was a real thing (I believed it was just like getting a headache, I didn't know it was an actual condition) and that iron could help some people with it. I suffer with this intermittently and I tried iron and - lo and behold - it works for me. So despite the fact that I had borderline healthy B12 when I was tested, it managed to give me TN. Plus although I don't show as being anaemic my body obviously has some kind of problem getting iron into my brain (they think that's what causes RLS).
Oddly enough, my blood tests always showed I had low haematocrit, which s apparently a sign of anaemia, but I was never anaemic. No doctor EVER paid the slightest bit of attention to that though, no matter how often I drew their attention to it. I think blood tests for neurological issues and related deficiencies are VERY wide of the mark. I don't think they've really got a clue!
Hi Chancery. Well, given the many post we have here, most GP's definitely don't have a clue, especially where B12 deficency and PA is concerned...and thyroid issues...and autoimmune conditions...and, well...evidence on all the forums here at HU 😖.
Funnily enough (but not fun at all), I also suffered from RLS when I had iron deficency anaemia - resolved when the anaemia did, so here's hoping.
About the TN - has your GP never suggested having a nerve block? I suffered very badly TN at one stage. A first nerve block reduced the pain almost to nothing and a second one (four weeks later) cleared all the symptoms completely. It's gone - and has been for the last ten years. Heaven. Might be worth discussing with your GP.
About the low haemocrit - can be caused by low iron, B12 or folate, heavy menstruation. It can also be caused by chronic inflammatory disease (especially if present with low RBC and low haemaglobin). If you suspect this as a possibility, ask your GP to test CFP and ESR (inflammatory markers). Won't diagnose any condition but if raised, will indicate that further investigations are necessary (thinking here - has your GP ruled out inflammatory bowel disease as a cause of your B12 deficency?).
Just wondering if your GP ever actually tried to determine the cause of your B12 deficiency...might be worth re-visiting...especially if your health is poor or your are suffering any symptoms that are bothering.
No, Foggy, my B12 was considered normal since it just fell within normal NHS parameters (it was 300+). It was me who had read "Could it be B12?" and discovered that UK figures are too low and that you had to be over 400 to be in the healthy zone. I had to strong-arm my doc into trying B12 injections and even after they worked (after a year of severe heavily medicated pain) he still wasn't convinced. So, because he doesn't believe it was an issue in my TN he never bothered about it, or any of the other poor blood markers. He just dismissed my blood tests as "Well, you don't have anaemia" because of the healthy iron/folate figures and conveniently ignored the low haematocrit.
I believe my poor B12 was caused by a multifactorial situation. I'd been on a very low fat diet for a year and a half, eating no red meat at all, and then I had a gallbladder removal. I think those two things together put my B12 through the floor. But hey, who knows, maybe my IBS and neurological problems have some B12/blood problem connection. Can't imagine I'll ever find out though unless I drop dead, and by then it will be too late!
Oh, Shal, if you are in the UK, 180 is far too low. I'm sure you could get someone to take action on that. You just need a bit of research and some studies to quote at them!
Yes Uk . went today wasted my time she say depression.
The problem im have i dont understand half the stuff and to be honest scared to speak out, stuipid i know but i like to hide rather than make a fuss and with the fuzzy head it's difficult .
You need to get a friend or relative to come with you to help you fight your corner. You've got to think of it as like going into combat: you need to be prepared with your argument sorted out and rehearsed and all your research to back it up. There's no point in expecting them to sympathise - they don't. You've got to give them the best hard facts you can muster, and preferably the solution you want. If you can tell them what you want, such as a test or a particular drug or treatment they often give you it because it's easier than doing the research themselves! Best of luck. X
If you don't have any friends or family you can get someone to come with you as a patient advocate. I can't remember who it is that administers that, but I'm sure if you Google it, it will tell you all you need to know. Don't try to face docs on your own if you are struggling - there's help out there for people in your position. I'm in the process of splitting from my partner who is also my carer. When my TN comes back, as it inevitably will, I fully intend to make use of the patient's advocate system, as I have no friends or family. I'm almost a zombie when on medication - I'll need all the help I can get! Very best of luck - hope it all turns out for you. X
I m so sorry to hear that your having to go through splitting up . I been ther got the t-shirt as the saying goes , thats why i'm as i am , will take a look at the advocte system thanks again.
Hi Shal61. Been reading your replies here and also some of your previous posts.
Can I make a suggestion that might help you get better information?
Put up a new post with the title:
Please help. unable to get treatment from my GP.
In the post outline your family history of PA (Mum), what your serum B12 level is (180, I think you say - very low) and the reference range that was used - if you have it, together with details of any other tests your GP has done.
Then list your symptoms.
Finish with a question - what tests should I ask my GP to do and how can I get him/her to treat my low B12 levels.
I'm asking you to do this for several reasons.
1) All your information will be in one place and people will be able to give you better advice if they have your information and history.
2) All the advice will be in one place - you can print it off and use it for reference - it will help you organise and plan how you want to deal with your GP
3) people always want to help when Gp's are being difficult - we've all been there 😖.
4) I've seen in your recent post how upset you are and I'd like for you to get some help sooner rather than later (unfortunately I spotted this and your new post just as I was leaving the forum. Stopped to leave this reply but really sorry can't leave more tonight).
So...if you do a new post new based on the above, you'll get replies that will give you the help and information you need to deal with your (rather horrible) GP.
Not able to pop into the forum until tomorrow evening but will check to see what responses you've had - and leave a reply if I can add to anything that's been said.
Please don't despair - lots of lovely people here to help you and we all know exactly how you feel. Most of us have been there too. Sadly.
Take care x
P.s. Sorry Chancery - butted into your conversation with Shal61 - but somehow I don't think you'll mind 😉
Not in the least bit, Foggy, butt away. I know exactly how horrific it is to try and fight doctors, and I always had moral support. I can't think of anything worse than trying to do that alone when ill/going through medication. It's hard just to get up in the morning, never mind try and convince an entrenched doctor you are not coping. I'm currently trying to get rehomed and I'm in remission, so fully compos mentis, and it's still a real struggle. It is very tough to convince any 'authority' you need help when they are all structured to withhold it!
Hi Chancery...you're absolutely right...IBS, B12 and iron deficency all connected....going to start a new reply so that you don't have to read a small sausage....incoming 😀😀
I did some more research and it looks like cyanocobalamin is used for b12 shots in the USA (where I am) and has aluminum while hydroxocobalamin doesn't have aluminum and is used for b12 shots in the UK. So not only does the USA use the synthetic form which isn't as healthy and the body has to convert, they also include a dose of poison (aluminum).
My prescription of cyanocobalamin is manufactured by Somerset Therapeutics in NJ; the bottle and included literature both state that it contains aluminium, not more than 57 mcg/l. If no aluminium is in b12, why the manufacturers disclaimer? Is some amount of aluminium unavoidable due to manufacturing or packaging perhaps? Thank you in advance foe your time.
Hydroxocobalamin, the main form of injectable B12 used in the UK, does not contain aluminium. (Though some in the UK use cyanocobalamin as a matter of choice because it suits them better).
Cyanocobalamin (which I understand is the main form of B12 used in the USA - and some other places too) may contain aluminium. It will be listed in the patient information if aluminium may be in it.
The amount is minute and for the majority of people, not a problem.
However....
Those with impaired kidney function or Lieber’s Optic neuritis should not use cyanocobalamin.
I just found this thread because I was reading the vial of my cyanocobalam (B-12) shot. It says “contains no more than 57 mcg/L of aluminum, so mine DOES contain aluminum. Maybe because it’s a generic for B-12? Or maybe because it’s manufactured in India? Regardless, I think I’ll stop using it, because it can’t be healthy to inject aluminum no matter how small the amount.
Bottom line, check your vial, see where it’s made, just to be sure you’d using a safe product.
Yes...cyanocobalamin does contain aliminium (amount listed in PIL). Many people use cyanacobalaim with no problem, even given the very small amount of aluminium it contains.
But, as above, those with impaired kidney function or Lieber’s Optic neuritis should not use cyanocobalamin.
Hydroxocobalamin (the form mainly used in the UK) does not contain any aluminium.
You'd think! I had two illnesses close together, severe gallbladder disease followed by Trigeminal Neuralgia. Because of these I had regular blood tests, every month for a while, and I always had low haematocrit. In fact, while on medication for the TN it steadily fell, along with my blood sodium and my white blood cells (I have neutropenia as a default position) but never once was the haematocrit picked up on, although I always drew attention to it. I actually told my doc at one point it meant anaemia, according to Dr Google, but he just shrugged it off.
My iron and folate never showed as low, so go figure! Whatever is going on in me, I'm either a medical anomaly or my doctor is ignorant!
So Chancery...here's the reply in a bigger sausage avoiding space...
Your right about the connection...(and your GP's a numpty)...
Many people with IBS suffer from absorption problems as they are unable to absorb iron and vitamins properly (the main culprits being vitamin B12, iron, and folate - bit there are other too).
So...your IBS is a likley cause of both your vitamin B12 and iron deficiencies.
A further complicating factor...when you had your gall bladder removed it is more than likely that you were given nitrous oxide as part of the anaesthetic - and nitrous oxide deactivates all vitamin B12 (this is not detectable on blood tests). This is problematic if you have an absorption problem (which you clearly do) because you cannot get new stocks of vitamin B12 from the liver...it can only be replenished by having B12 injections - preferably a new round of loading doses.
Trigeminal neuralgia can arise due to untreated or under treated vitamin B12 deficency.
So, all connected.
Some things your GP obviously doesn't know about B12 deficency (and iron deficency anaemia and IBS, by the sounds of it 😖).
When your GP said you didn't have anaemia he will have been looking for the macrocytic (large red cell) anaemia sometimes associated with B12 deficiency - didn't see any macrocytic cells, so assumed you couldn't have B12 deficency. Wrong. 30% of people with B12 deficency and neurological symptoms present without macrocytic anaemia.
The serum B12 test is a blunt instrument for assessing B12 deficency. All the guidelines state that where neurological symptoms are present (as in your case) treatment with B12 injections should begin immediately - even if B12 levels are within 'normal' limits. (UKNEQAS issued a B12 treatment Alert instructing doctors to do this - included in some links below).
B12 deficeny can be present even when serum B12 levels are within normal limits....or even very high.
So, when you eventually persuaded your GP to treat you with injections, you should have received 6 x loading doses of B12 on alternate days and then injections every other day until no further improvement (perhaps for many months) and then B12 injections every eight weeks (though this is not enough for some people - but that's another story).
I strongly suspect that you did not get this regime (many GP's don't know about it) and that there perhaps has been a 'missed step' in your treatment (the second step involving every other day until no further improvement). It may be that having this regime would have a beneficial impact on your trigeminal neuralgia - neurological symptoms take some time to repair properly and having the loading doses then (I suspect) the 'usual' three monthly jabs may not be sufficient to effect proper neurological repair.
Just wondering how you feel generally and if you're having any other symptoms of B12 deficency (symptoms list in the links below)? TN apart, if you have B12 deficency symptoms that return before your next injection - then get better when you have your jab - you need more frequent injections.
And how often do your have injections now?
Also - has your GP checked your ferritin levels, done a full iron panel (better marker of true iron status), checked your folate levels? Done a FBC recently? Checked ESR and CRP levels (raised if inflammatory process taking place and would indicate further investigations required - should have been done if IBS suspected).
Don't know how much information you have about all things B12 - you've obviously been reading 😀, so I'm going to,post some links below that will give you information about how B12 deficency should be diagnosed, treated, and managed, together with the U.K. Guidelines that your GP should be following (but hasn't). And some myth busting information in case your GP decides to withdraw your B12 - or refuses to prescribe enough to effectively treat you neurological symptoms.
Don't be daunted if it looks like a lot - most are only one page long and the one long one contains useful summary sections if you can't face the whole thing. All very interesting and I expect you'll be quite cross when you see what your GP should have done/be doing to help you.
Think it would be a really good idea to consider whether you are having B12 frequently enough - especially in light of neurological symptoms. If it was me, think I'd want to try and persuade my GP to go back to the 'missed step' and have injections every other day - may well help,with the Neuro symptoms, though it could take some time to tell if this was being effective.
If the GP is worried about surgery/nurse time involve in alternate day visits for injections (indeed it might not be convenient for you either) you could offer to be taught to self-inject (not as bad as it sounds) and therefore relieve the burden on the surgery 😄😄.
Anyway...here's some links (annotated so that you can find things more easily). Hope they help, happy reading, post again if you need more help or advice 👍
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
Hi Foggy, many thanks for that fabulously in-depth reply. And you are absolutely right, a stage was skipped in my treatment. I lost it as part of a negotiation in order to secure monthly injections! My doc was dead opposed to trying B12 for my TN as he had never heard of it and my B12 was ‘normal’. I had to prepare a dossier of research to convince him that it was a valid thing to do - after a prolonged fight over the subject.
I saw very rapid improvement on B12. Even before treatment was started, while I was waiting for him to grant approval, I started taking sublingual drops and saw an improvement in pain within 3 days – my body was that hungry for it. It only took about 3 weeks after treatment commenced to see a marked improvement. Unfortunately my doctor believed, and still believes, that this was due to the placebo effect. It’s a well-known fact that placebo is relatively short-lived (try placebo-ing cancer away) so it would make mine the longest-lasting placebo effect in history, but hey, it’s better than my doctor being forced to admit there may be some case for B12 problems in TN.
Anyway, after loading doses he dug his heels in about giving me more – he’d already indulged me too much – and he wanted to put me onto the standard regimen of every 8 weeks. I was REALLY concerned about this and desperately wanted monthly injections because I wasn’t out of the woods yet, so after arguing about getting continuing alternate days shots I ‘conceded’ by saying “Well, how about giving me monthly injections then and we’ll let the alternate day shots go?
This placated him and let him save face over being seduced into the dark side (as he calls it - seriously). And that was how I missed out on the continuing injections. I still think I got a very good deal though because I did go into remission and have stayed in it ever since. I feel strongly that 8 weekly wouldn’t have done that
All that said though I still feel something is wrong neurologically. Specifically, my gut doesn’t work very well – evidence my chronic constipation which seems to be caused by over-absorption of fluid from my gut OR it moving far too slowly. Additionally something seems to be wrong with my rectal nerves because there’s a lack of stimuli there, for want of a better word (it doesn’t give clear signals).
Neurologically the only other things I have are shooting electric pains from my foot (right-hand) to my gut, referred pain if I scratch the back of my head (left) which shoots down to my right wrist, again electrical, and the most recent manifestation, a dead right leg that feels like pins and needles from my hip to my feet. This last one though might be my fault for sitting on the edge of the sofa! The only thing odd about it is that it lasts an awfully long time: one hour’s perching can lead to numbness all day into the night and beyond.
Other than that my worst health problems are tendonitis in both ankles and an odd pain in my shoulders/arms (which might be calcium deposits, I discovered recently) and generalised problems with muscles/tendons. Mines are very weak and pull really easily
Mentally is a different picture though, as sometimes I feel like I am going crazy. I get disassociation, where I just feel odd; bad depression (mornings can be ferocious), severe insomnia (I’m awake till dawn most mornings then I sleep till I PM) and problems with (food) addiction and some OCD – you know, the usual vague unhelpful suspects that everyone gets to some degree.
As I mentioned above, I’m leaving my partner of 40 years on what feels like a whim and I have genuine fits of panic about whether I’ve just gone a bit crazy. When I was on meds for TN I definitely went a bit crazy, but there was an excuse there!
As you can see, none of it amounts to much, no matter how unpleasant it is to deal with, and it isn’t a clear picture of B12 deficiency. Who at sixty isn’t feeling sore, stressed and achy? There’s just nothing concrete I can take to a doctor, no matter how miserable it makes me. Besides, if I said I thought I was still having B12 problems I’d be lucky if he let me finish the sentence before he said “You can’t be, with the injections your figures will be through the roof”. They were only retested once and yes, they were very high, as you would expect on monthly injections – so no cause for complaint there
Right, that is more than enough moaning. Thanks again for all that lovely data, I really appreciate it. I know this stuff pretty well, although I’ve forgotten a lot of the specifics, so I’m going to read my way right through it and see if anything jumps out at me with a new eye now that I’m much further down the line. Thanks again! X
ETA: I should just add that I developed a tremor and hyperactivity/anxiety while coming off Carbamazepine and, for some reason, it never went away. I have good days and bad days but the shakes, and fits of anxiety that barely feel manageable, are common for me. I was allergic to Carbamazepine, a fact my doctor never picked up on (despite a horrible rash), and whether these things are just permanent damage from that or a sign of something that was already pre-existing I do not know.
Chancery. Just horrified to read what you say a above.
Your GP is putting you at risk of potentially irreversible neurological damage (subacute degeneration of the spinal cord) by not treating your obvious (and worsening) neurological symptoms...and what could possibly be neuro psychiatric symptoms.
The ongoing symptoms you describe as not 'amounting to much' do indeed amount to a lot - shooting electrical pains, numbness and in particular the numbness of your rectal nerves are all signs of potential neurological damage.
Tendonitis and the other host of symptoms you describe (including the anxiety attacks/depression) are all also signs of B12 deficiency.
Your GP's idea that allowing B12 injections once a month has aligned him with 'the dark side' (and put you in the placebo effect department) is astonishingly ridiculous...the medical equivalent of ducking witches! And that's a really nice way of putting it (though I'm not feeling nice about this at all).
Your GP is flouting all the guidelines and evidence about the treatment of B12 deficency and putting you at risk in the process.
Also - all the guidelines state that once B12 therapy has commenced, B12 serum levels are meaningless in terms of evaluating clinical efficacy (as you say, they'll always be high because of the injections). So, 'high' levels are no reason to withhold more frequent injections. The only way to judge the efficacy of treatment is...the relief of symptoms (goes along with effective repair). Your symptoms are showing potential signs of increasing damage.
In short....you need to start alternate day B12 injections immediately.
You're obviously able to handle putting together an argument with evidence (you've done it before 😀) so might be a good idea to use the guidelines and evidence from the links above to and put in an urgent request for immediate treatment with your GP.
Also - download information about subacute degeneration of the spinal cord - include this as evidence - ask your GP to confirm that he is not putting you at risk by consistent failing to treat your B12 deficency according to the recommended guidelines (every other day until no further improvement etc). (He is putting you at risk - many GP's are completely unaware of the neurological havoc that untreated it undertreated B12 deficency can wreak on the body).
The first aim is to start on B12 injections every other day - all the guidelines say immediately when Neuro symptoms are present - honestly, you really should not wait but progress this as a matter of urgency.
If your GP still refuses to treat you - get another GP. And in the meantime (because you really do need more B12) consider self-injecting B12 to keep you going until you can access appropriate support from a medical professional.
Next - ask for an urgent referral to a neurologist for an MRI scan of your head and spine, plus nerve conduction tests. Need to check for neurological damage and see if there is any other underlying cause for your neurological symptoms).
Next - ask for a referral to a gastrologist for,your bowel dysmobility and other gastric problems. Again, an urgent referral,would be appropriate (recall nerves not working etc.)
Chancery - I'm really sorry if the above sounds a little blunt and direct...I'm really short of time is morning so having to work quickly so as to get something to you...so no time to 'soften' the words....oops, sorry.
In short....your GP has been/is being negligent, at your expense. Bit aim know you have the ability to challenge him....so get challenging.
Help available on the forum if you are forced to turn to self injection (safe supplies, equipment etc.).
Sorry, I have to dash now....very best of luck....post again in you need more help...or PM me if desperate/urgent (will respond asap when available).
Hi Foggy, thank you very much for your concern - I have to admit you've put me in a bit of a spin. I am very reluctant to consider that I may still be having blood/B12 problems, simply because I can't face taking on my doctors again. It was a very hard struggle, fighting them when I had active TN, and I really don't want to revisit it.
That said, you sound more knowledgeable than most on the HU forums (I say that with love!) and it frankly worries me that you feel there may be an issue. I usually approach advice on the forums with a healthy dose of scepticism but I have concerns here because you obviously know your stuff and because I have to admit I am struggling with some things that are worrying.
Could I pick your brains on a couple of points that could be really valuable to me? My doctor was most emphatic (and dismissive) about me not having anaemia. So much so that I was always afraid to broach the substandard haematocrit. I always assumed he knew something I didn't!
I did research it, but at the time all I could discover was that it meant anaemia, but with no indication of HOW it meant anaemia. I didn't have pernicious anaemia, and from what I could see thee was no other kind. Anyway, after reading your reply I dug out all my old blood tests and see I was showing borderline haematocrit since 2012 and low since 2013. At last measurement, in Sept 2015, it was 'healthy' again, but only just, as the bottom figure is 0.37 and mine was 0.37. It's never been tested since. I can't remember if this was after B12 treatment had started, but I assume so since we stopped testing my blood, which would indicate improved health.
I discovered on looking through these that it was flagged on a couple of tests as being "RBC's anisocytic mormochrmic". At the time I must have only been able to find the 'normo' part of that because I remember reading that as meaning that the cell counts were normal. Tonight however I discovered that the 'ani' part means the cells are misshapen (or unequal sized? Sorry, no memory retention here!) and the 'normo' part means they are within normal parameters but too low - an oxymoron if ever I heard one. But basically, no, not normal blood.
Now, at the time I was on Carbamazepine which is known to mess with your white blood cell count, but I don't think its known to mess with red blood cells. So am I right in saying this pretty much says I had abnormal/anaemic blood? Or am I reading this wrong? It said on Wikipedia that 'ani' with normochromic indicates early B12, iron or folate deficiency. If that's the case it means my B12 deficiency was actually flagged on there BEFORE I asked for it to be tested.
The other thing I wanted to ask is, as I take iron tablets as and when I need them for RLS this would adversely effect testing for iron, wouldn't it? So there would be zero point in testing iron or B12 since both are being supplemented. Given that, what do I do if I want to go to my doc with this? Will I just have to argue it on the strength of having some nerve pain? You can probably hear my reluctance from here.
I wouldn't go back to the same doc, there's a woman doc in the practice who is a little better, but I still feel very uncertain about my footing here. While I was on Carbamazepine I also developed mild hypothyroidism, and tendonitis is associated with that, so I have wondered if my current problems, like constipation, may be coming more from that than a B12 issue. Coming off Carbamazepine returned the thyroid figures to normal - not great, but normal. Likewise, they've never been tested since, so it is possible that I have mild hypothyroidism that the Carbamazepine just aggravated and that really I might have an issue there (there is a family history of it). Carbamazepine did seem to exaggerate problems rather than create them. I already had low blood sodium and neutropenia before Carbamazepine but both got a lot worse on the drug, so possibly I am a little hypothyroid.
I need to get my dates together for when everything started but if you could give me some idea of whether I'm right with these old blood tests - I'm very much aware they may be completely healthy now, which would be a problem in itself when approaching doctors. Given that, any suggestions you might have how someone like myself, who is already in longstanding treatment, might approach a doctor would be most gratefully accepted. Many thanks for all your help.
Ah, sorry, just found one newer blood test, done in January 2016 and my haematocrit IS healthy. It's at 0.41, which is definitely out of the danger zone. I imagine that puts me in the all clear for anaemia and indicates the good work being done by B12, but that probably undermines my position more than ever!
Hi Chancery. First, I'm really sorry that my reply has put you in a 'bit of a spin' and I can week understand how horrified you feel,at having to start dealing with doctors again.
First (but briefly because it's late now) the absence of macrocytic anaemia tells nothing about how effective B12 is being at repairing the body and making individuals well - once injections are started (as yours have been) the macrocytic element resolves quite quickly. And some people have B12 deficency without ever having macrocytic anaemia - even when symptoms of B12 deficency are present (30% of people present without macrocytic anaemia and some also have serum B12 levels that are within what's called 'normal' range, even before treatment is started: B12 deficiency can thus be present even if serum B12 levels appear to be normal.
You've raise a number of questions that I'd like to be able to go through them properly and systematically, and also refer back to your previous replies so that I have the full 'plot' before I respond). So, if you don't mind, I'd like to do this tomorrow when I'm less tired and have a clearer head. Also, it's a bit late now and will take some time - and I want to take the time to be sure that I do your questions justice.
Also - you give blood results above - it would be very useful you could list them all in another reply and also give the reference ranges (the figures in brackets after the results). This is because each lab uses slightly different ranges depending on the equipment used and how it is calibrated 😖) so, the results are only fully meaningful when viewed against the reference ranges that were applicable to those results.
It's also worth noting that for some people (particularly where B12 deficency is concerned) being within the reference range is not always good enough - it's where the result sits within that range that is important (right at the bottom - or indeed at the top - is sometimes not good enough).
Anything you have on MCV, MCH, MCHC, Haemocrtic, HB, RBC's, or RDW would be useful.
And ferritin, folate and vitamin D would also be useful if,you have it 😀.
But don't worry if you can't face it...the detail you've given will be enough to provide you with some information that may help.
It might help you to print off the documents in the links I left, read through, and highlight anything that is relevant to your case, paying particular attention to: problems with serum B12 testing - especially once treatment has commenced, BSH guidelines for treatment - especially where neurological symptoms are concerned, the role (or not) of macrocytic anaemia, and the important of treating symptoms (not serum B12 levels or on the presence/absence of macrocytic anaemia). Think this will help you to understand what your GP should have been doing, and also shed light on some of the common mistakes many GP's make which lead to people not receiving the correct treatment.
Please don't worry...this is something that can be worked through (with evidence) and I'll try to help you gain enough information to make an informed decision about what you want to do and how you want to proceed, whether this means approaching your GP for more frequent injections, or topping up with your own B12 injections in between ones prescribed by the surgery (many people here choose - or are forced - to do that).
Worth noting that if you lived in many countries in Europe, you could buy B12 injections over the counter and inject as often as you needed to get and keep well. Also, B12 is neither harmful, toxic, or addictive (some of the nonsense that GP's often tell their patients).
I also note that you have potential thyroid issues - lots of cross-over between thyroid/B12 deficiency symptoms - so might not be easy to sort out which symptoms are due to what. In short, the only way to really find,out may be to try more frequent B12 injections - if they work, that's the answer. And if they don't, then further investigation should be undertaken. You should not have to continually suffer with all those symptoms (especially the neurological ones) and have your GP (or GP's) do nothing to to try and determine the cause - and help.you get well. You are entitled to better, and deserve better 😀
I also have to say that I'm not a medic nor do I set myself up as any sort of expert in B12 deficency.
I'm just someone who struggled to get a diagnosis and appropriate treatment (like many here), was originally helped by the folks on this site...and have been reading about all things B12 deficent ever since. And trying to repay the kindness and help I got here by helping others (in particular those trying to get treatment, or those who are potentially under treated and therefore,perhaps still having the symptoms of deficency.
And oh my goodness, B12 deficency can be very complex 🙃.
So...I'll reply again as soon as I can tomorrow...will start a new reply so you don't have to read a very thin sausage 😀.
👍 x
P.s. Can you just remind me how often you have B12 injections - can't remember if you said or not 😀
Thanks Foggy. I get B12 injections once every 4 weeks, which is pretty good and more than a lot of people get.
I don't know that it is very helpful to give you the haematocrit figures since they are so old and, hopefully, look nothing like this now, but the lab baseline was 0.37 and mines ranged from 0.33 (I think) to 0.36 most of the time, so just under the base normal figure. And, as I said previously, while I was on Carbamazepine they dropped steadily, but then so did my white blood cell count, so it is possible that was nothing more than the blood disorder that Carbamazepine was producing. It's a godsend of a drug and a nasty one at the same time. Every TN sufferer has a conflicted relationship with it!
I was just interested in the fact that I had the low haematocrit beforehand but my doctor said it wasn't anaemia when it patently was. I am baffled by that, since blood problems, and absorption problems caused by blood problems, are known to cause neurological issues. I am really perplexed as to why he didn't think it was relevant, and even more perplexed as to why he gave me such a hard time over B12 injections when I was showing as anaemic.
It also makes me mad that I spent literally years only eating chicken and not touching red meat because it was bad for me, allegedly, while my blood basically went down the toilet.
One of the problems here is I don't have exact dates for when everything started. Nor do I have haematocrit tests to speak of before TN. I really need to sit down and go through everything and see if I can get a timeline of what happened first and the state of my blood during my illnesses.
Not that any of this is particularly helpful now! I think it just maybe puts my mind at rest and also gives a little more credence to me having (had?) genuine issues with blood. My doctor did such a good number on me that he completely undermined all but my most basic certainty (that my TN had something to do with B12 deficiency). I actually stopped seeing him and switched my injections to the nurse because I found his constant scepticism really insulting. He was basically saying "I'm giving you these injections because they make you feel better, but it's hokum and I don't believe in it for one instant." I always used to come out more depressed than I went in.
Anyway, if I can pick up the necessary motivation (fear of paralysis in my legs is my overriding one at the moment!) I will make an appointment to see my lady-doctor, give her a brief overview of the collection of problems and ask to do thyroid tests first. If we clear that one out the way I can then tackle the possibility that it might still be a B12/iron/blood issue of unknown origin. Oh how I love ailments of unknown origin; doctors are so supportive of them. Not.
The one thing I would ask you, if you can throw any light on it at all, is what can they possibly do to test the B12 theory now? Would nerve testing be the only line of testing they could take? Or would giving me more injections and seeing if things improved be a better solution? It seems so very shot in the dark, that (ha! A pun). I mean, my doctor gave me B12 injections for TN and it turned it around really quickly - you don't get much more conclusive proof than that - yet he believes it was a coincidence/placebo. What will they be like with "Yes, B12 took away my dead leg"? Doubtless that would just be natural healing.
I actually like the idea of injecting myself because then I don't need to go see the %^+***, but I am petrified of the idea of doing it myself. I have a terror of sticking it in a nerve. I've heard that's really sore! I think having TN has made me a real scaredy-cat about anything nerve based.
Right, I'm done wittering on about all my neuroses. Thank you very much for being my sounding board. That's been valuable all by itself. A trouble shared s a trouble halved and all that; I really do appreciate it. X
Hi chancery...just to say, not sure if,you e seen my reply below...posted at the same time you posted this 😀.
You shouldn't have to feel grateful because you've managed to get more B12 injections than some people 😖. You never had the right treatment and once a month may not be enough for you - enough to effect proper neurological repair and enable you to get and keep well - and you Re concerned about loosing the use of your legs! Many people here have to inject every day to get and keep well...so....(and in answer to,your question a above....the very first things I would do would be to get more B12 - whatever way you can. It may or may not be the answer but the consequences of not trying it are to horrible to contemplate.
About your previous blood results...your right, these tell you nothing about how things are now. Perhaps better to focus on now and going forward rather than what's been before. And your of the Carbamazipone now and your haemocrit is still very low...so not safe to assume that it's due to having taken the drug...may be an ongoing problems...and most likley is due to your absorption problems (the IBS).
You say you don't have PA. Hope your GP is aware that the IF test is notoriously unrealiable! Returns false negative results 40-60% of the time....so you can test negative and still have PA (called antibody negative PA - see diagnostic flowchart in BSH Cobalamin Deficiency Treatment Guidelines - in links Imgave you).
Also - and I feel quite exasperated with your GP - he should be treating your symptoms (ongoing and some quite worrying), not just looking at your blood results!
Anyway, that's enough from me...only.popped in to flag up. Y reply below.
Hi Chancery. So..to your thoughts and questions...
First, have to say you have a lots going on in the medical department and it's not going to be easy for you to sort out what symptoms are due to what conditions (or potential conditions). So it's going to be case of giving you some things to think about, to try and help you find a way forward with your health issues.
I'm also aware that for some of the things you've raised, (and that I'll just touch on just briefly) advice has been given on other fora 😀, for instant Thyroid UK (by Marz et al) - and that advice was very good (lovely thyroid folks) so I'll echo that briefly simply to put it in contex with your questions here 😀.
Your questions:
About anisocytic monochromic anaemia:
Anisocytic red blood cells are blood cells that are unequal in size - the difference in size means that the rbc's are less efficienct in carrying oxygen. This in itself is not serious: can be caused by (amongst other things) vitamin B12, A, and iron deficiency (links here with your absorption problems and potential eating disorder). It can also be the sign of more complicated disorders of the blood cells (but always look at the obvious know problems first -IBS, absorption issues etc).
Normochromic is anaemia in which the concentration of the haemaglobin in the blood is normal but there are an insufficient number of red blood cells. The potential causes of this type of anaemia are different: postheamorrhagic, haemolytic, aplastic, and anaemia of chronic disease (anaemia of chronic disease sometimes accompanies inflammatory bowel conditions, and other things too).
Haemocrit: since 2012 your haemocrit has been either under the reference range or low,in the reference range (the most recent 2016 results of 0.42 is only just above the reference range (bottom 0.37) so although your GP will say this is 'normal', it's much near to the anaemic end of the reference range...and you do suffer with some potential symptoms of anaemia. Sometimes it's where the results is in the reference range that counts.
So...you have a mixture of these cell types but...and this is where it gets difficult...these result have to be read against the results in the rest of the full blood count, which is like a jigsaw - all the elements count and potentially change the finished 'big picture'.
So...from the above - yes - some form of anaemia (probably a. Is true of. I crocheting and macrocytic) which may (or may not) have been caused by B12 and/or folate deficiency iron deficiency, or other deficiencies.
And here's where it get difficult again...there are many types of anaemia (not just macrocytic or iron anaemia) so pinning the anaemia down to just those causes (especially if those potential causes are being treated) might be a reductive approach - especially as you still have symptoms which could be due to anaemia.
Your GP should consider your full RBC results in light of your symptoms (taking note of those that are both low or high within the range) and also consider chEcking your ferritin levels (one marke of iron deficency) and doing a full iron panel (to check on true iron status and rule other potential anaemias (different anaemia need different treatments, depending on the cause- iron not always the answer where anaemia is concerned).
Of course, In terms of anaemia, can't say that this is what's happening to your or relevant in your case - simply some things for you to ponder and raise with your GP in your quest for better health.
The fact that you've taken iron supplements will obviously affect any blood test that measure iron but...it the effect depends on how much you've taken and for how long. And you can take over the counter iron supplements and still be iron deficient...it also depends on how low your levels were and how well your body absorbs iron (not very well with IBS). In short, the only way to tell is to test your ferritin levels and do a full iron panel.
So in answer to your question - 'is there any point in testing for iron when supplemention has taken place - well, yes (for the reasons above) especially if supplementation is sporadic.
Here's some links to information about the different sorts of anaemia and iron disorders:
About carbamazepine: this impedes the absorption of vitamin B12 and folate. Here's a research paper about that (abstract - the full paper is still in copyright and hidden behind a pay wall 😖):
If you were having vitamin B12 injections when on this drug then this will have addressed the B12 problems (since you got the B12 from another source). However, if you started this prior to your B12 injections then it could well have contributed to your B12 deficiency (the IBS will be significant too). Furthermore...
This drug also causes folate deficiency: B12 and folate work together so if you were/are deficient or low in folate (need to be mid-reference range), the body cannot utilise B12 properly...no matter how much is in your blood. So, some of your o going symptoms could be related to low or deficent folate and the resulting impact of the body being unable to use B12 properly. Hope your GP has checked (and is keeping an eye on) your folate levels. (The paper above indicates that B12 and folate should be given at the same time as this drug).
You also asked if you were right to say that 'there is zero point in testing serum B12 levels when B12 injection is taking place'. After supplementation (from any form) then testing is no longer recommended because B12 levels will be (should be) very high - usually over 1000 and perhaps even much higher. But...testing is recommended if looking for low levels of B12, in which case more frequent injections are required (some individuals are very efficiency at processing B12 and it can leave the body very quickly).
So, to that question the answer is both yes and no 😖. If the symptoms (or,potential symptoms) of B12 deficiency are still present, it's usually best practice to check levels (if low, give more B12 - if high continue use with B12, if still symptomatic - give more frequent B12 - especially with neurological symptoms where every other day injections are required).
Carbamazepine and hypothyroidism: you say that since stopping the drug, your thyroid results were 'normal' but not great. Think Marz has already covered this on the thyroid forum. Thyroid is not really my thing but I agree with her about testing TSH, FT3, FT4 and the thyroid antibodies TPO and Tg (only way to assess true thyroid status). But that me out on thyroid issues - you can get really good help on the thyroid forum if you need more advice on all things thyroid.
As you are aware there are many cross-over symptoms between thyroid and B12 deficiency symptoms, which might make it difficult to distinguish between the two. And as I've said before, the only way you will know if your B12 deficency is being under treated is to have more frequent injections and see if the your o going symptoms get better.
So...to your last question...how can you get your GP to consider under treatment of B12 deficency as a potential cause of your ongoing symptoms - including the neurological ones?
Well...with evidence (use the BSH Cobalamin guidelines and other evidence I've included in a previous reply...and here's a B12 treatment review paper written by a haematologist and published in the Blood Joirnal on 13.5.2017 - fully under pinned by appropriate research papers:
bloodjournal.org/content/bl... (B12 Treatment Review: Paper by Haematologist: Published 13.05.2017. A Must Show to GP's who Refuse to Treat B12 Deficiency due to lack of Understanding)
(This paper details all you'll need to know about the role (or not) of macrocytic anaemia in B12 deficeny and the dangers of under treating B12 deficency - along with lots of other great information too.
This paper will show your GP just how wrong-headed he is in his consistent refusal (amongst other things) to treat you in accordance with the guidelines set out by the British Committee for Standards in Haematology (neurological symptoms equals every other day injections until no further improvement).
Whether you see you current GP or the lady doctor you talk about, some here have had succes by writing to a specified GP before their appointment to outline one their concerns you could include things like:
NOTE: include evidence from my previously links so that everything is supported - also,include the above paper and the BSH Cobalamin treatment guidelines - highlighted in the relevant places.
Concerns about ongoing long-term ill health (list all of your symptoms - especially the neurological ones - numbness, tingling, problems with loss of sensation in rectal nerves...)
Their failure to follow treatment guidelines issued by the BCSH
Missed step in your treatment (the every other day injections). Want to go back to the missed step - the recommended treatment for Neuro symptoms - since you are worried that the under treatment of B12 deficency can lead to subacute degeneration of the spinal cord.
Fact that macrocytic anaemia and B12 levels not indicative of efficacy of treatment (better explanation in one of my other replies - sorry, running out of time) (basis for refusing more frequent injections - wrong). Basis used for denying more frequent injections wrong.
Ask them to confirm in writing that you are not potential being exposed to irreversible neurological damage due to inside every treatment
If they still refuse to treat you with more frequent injections: ask them to confirm in writing that you are not at risk of developing subacute degeneration of the spinal cord and ask them to give their reasons in writing and provide medical evidence to support that decisions (they won't be able to because there isn't any).
Also say that you sincerely hope that they'll be able to read the enclosed evidence so that best use can be made of the appointment time, on the day.
This letter and your evidence/the treatment guidelines they should be working within, becomes part of your medical records...and they may be liable if your health is further damaged due to failings in treatment (some people had success by actually pointing that out).
And next to last...it strikes me that many of your symptoms have features of other autoimmune conditions (I know because I have similar symptoms and a recently diagnosed underlying autoimmune condition). If anyone in your blood family has an autoimmune condition it's more likely (but not definite) that you could develop one also (this includes the Hashimtos thyroiditis that Marz has previously mentioned). So...has you GP done routine antibody testing? And has he tested inflammatory markers (CRP and ESR)? Your symptoms alone suggest that this might be a useful test to ask for (it won't given a diagnosis but if raised, will indicate that further testing is necessary). if further testing is required, this should be by a rheumatologist, who will look for (amongst other things) lupus, Sjogren's, connective tissue disease, rheumatoid arthritis...and many other autoimmune conditions too.
And last...you have a lot of symptoms that you are worried about and you sound as if you are. Ery unwell.
Your GP should at least consider ongoing B12 deficency (because of under treatment) and rule out thyroid issues.
As I've already said in a previous reply, you should ask for a referral to a neurologist (urgent) and a gastroenterologist - this would be usual considering your symptoms and the length of time you have had them (and perhaps to an endocrinologist and a rheumatologist if antibodies and inflammatory markers are raised). Your GP should want to help you by investigating throughly and getting to the bottom of your quite worrying (and life limiting) symptoms.
Really good idea about seeing the lady doctor...bit to be honest, if you fare no better, I'd change surgeries - may be no better...but there would be a new start and the hope that it was.
Anyway Chancery...no easy answers here but I hope some of your questions have been answered...and that perhaps you can see a way forward with this.
All here know only too well how difficult it is to deal with dismissive and potentially hostile doctors so just try to be brave (again) and face them head on (and a letter first works wonders for the bravery since all the asking and presenting evidence has been done once you arrive). And if you can, take someone with you...sadly, doctors are more amenable and less hostile when a witness is present.
Very best of luck and I hope,you find some answers soon. Put up a new post if you need more help - lots of lovely knowledgable people who can pop along and offer help and support, when and if needed.
Very many thanks for all of that. I've taken on board your excellent strategies for getting the docs to take it seriously, and I'm reading my way through the links. The haematologist's article is really good, as is the stuff on anaemia. I am still mystified as to why I have RLS when I now eat red meat every day, and take supplements, but hey, it was ever thus. I have zero idea what might be causing these deficiencies (I was tested for autoimmune issues and found negative) but they appear to have some substance.
Thanks again; you have given me a great deal to think about - going to have a good read through now. XX
Deficiencies caused by IBS...know fact...but not by your GP - obviously 😖.
RLS - I had. One when I had anaemia - and you HCT is still very low (only must edging into normal). Ask GP to,do ferritin and full panel (not an unacceptable request given absorption problems and symptoms.
Autoimmune antibodies tend to raise and drop according depending on disease activity at the time of testing. I had problems because referred to specialist when I'll but by the time I got there the 'flare' had abated and antibodies normal - partly due to,having been on steroids to (they suppressed the autoimmune activity). And some people have what's called sero-negative autoimmune disease (no antibodies present - like antibody negative PA. get them to keep checking...and you can always ask for a referral to a rheumatologist based on the symptoms you have - it's your right to do so, especially as you're so unwell - and getting worse by the sounds of it.
A way Chancery...pleased you like the haematologists paper - it's going to be so useful to hand out in the forum 😀😆.
Yeah, we were star-crossed lovers for a bit there, always crucially missing each other! I hear you about false negatives and poor tests for these things. I've been tested several times for coeliac disease because, with the exception of constipation, I seem to have a lot of the characteristics, but it's always negative. I discovered quite by accident, while something else was being tested, that I have borderline low IgA. Two things with that: one - it's something like four (or ten?!) times more common in coeliacs and 2 - if you have it you have to be tested a different way because it produces false negatives.
You wouldn't believe the fight I had to get the right testing. First I had to fight my doc since - you guessed it - he'd never heard of it, then I had to fight the lab who flat out refused to do it because - and this is a doozy - it wasn't low enough, although it was their lab that marked it as low. Then a haematologist was involved and he said it wasn't low enough to make a difference, a wonderful statement since how could you ever, in any universe, prove that or be certain of it?
Eventually my doc got a biologist friend of his to put a test through for me and then after all that fighting it was STILL negative. Things like that don't help your cause much!
A great question to ask as Aluminium is linked with Althzeimers Disease. Gosh I hate to think how many Vit B12 injections I have had over the years. This question needs to be asked by everyone.
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B12 injections
B12 injections 
