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New Response on BMJ Article! - Pernicious Anaemi...
New Response on BMJ Article!
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Poppet11
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•
It is getting very interesting! I am glad to see a comment on the cyano in cyanocobalamin, as I've always wondered why in UK there is now such a resistence to it, one previous forum user actually suggested it was more the pharma industry as in cyano gets them very little income, not worth producing (its the cheapest, and most stable form of B12), hydroxo is more expensive and therefore worth producing. This person's hyubby worked in the pharma industry. Marre.
Well, if people want to encourage the medical profession to give them more frequent injections then this is an opportunity for them to do it. They don't vote and the doctors use it to confirm they don't need it.
And there will be a lot of vested interests in there hoping people don't vote!
• in reply toPoppet11
I am a voting and signing petitions every where..!!
Ha! It seems the vested interests are out in force! No surprise there then. Wouldn't it be nice if we could see a list of who voted and how?
It's good to see that people are bothering to click on to the full article. I know many can't because they aren't registered, but the metrics are recording 1414 fulls and 1104 PDFs (I'm presuming they are a percentage of the full reads). So medical professionals are actually reading it - they might disagree but they are reading it!
Thank you for posting the latest responses Poppet11.
I was struck by Wilhelmina's response:
"Is it important which form is used in treatment? In most people, it does not matter. They can convert cyano- and hydroxo-cobalamin into the active forms needed. However, I have recently reported a case in which it did matter. The severe vitamin B12 deficiency, including dementia and psychosis, responded to treatment with high dose oral methylcobalamin, but not to equally high dose oral hydroxocobalamin. [1] "
I'm a bit confused by this. I understood the injections were usually hydroxocobalamin.
Does this mean that, for some people with severe deficiency, oral methylcobalamin would work better?
Has anyone else experienced this?
I think there is on-going debate about all this. Cyano has a shorter half-life, it has to be converted and it has a molecule removed and replaced with cyanide. That's is my understanding of it and many others may disagree.
Metabolically the argument for is that ultimately it doesn't make any difference as Wilhelmina states, and others state the cyanide isn't a problem. Then you are only left with a shorter half-life and so need it more regularly.
Hydroxo is sort of the half-way house.
But then Wilhelmina contradicts herself by saying a patient needed methyl rather than hydrox.
... and she is talking about oral medication so that complicates matters a little further.
From an injection perspective I can categorically state I get a return of symptoms if I use cyano. I have never tried hydroxo. I use methyl. However I do appear to be less responsive to methyl oral than I was originally and have to inject or I see a return of symptoms.
Most research is really quite non-specific because they will gauge the success of a treatment on how it affects the serum b12 levels (sometimes they use other tests too) but is that really what counts when the tests are so subject to interference?
There are precious few studies based on how successful treatments are when it comes to the effectiveness on patients symptoms - so should the rule always be that the patient decides what the patient receives?
Thank you Poppet11 for your detailed answer. I was particularly interested as sis had the symptoms Wilhelmina mentions. She has had a course of Hydroxocobalamin from her GP and is waiting for the next whilst supplementing with oral methylcobalamin. Although some symptoms s a lot better, her memory is still causing concern.
I wasn't aware you could inject with methylcobalamin. Do you source this privately?
Yes, I do source privately.
You are aware that she may never get completely well, aren't you?
Yes, that's what I'm afraid of but still have to try everything !!!
Of course! Get as much b12 into her in the first year. Then after that you will have a better idea of how she will stand long term. I'd then give it another 2 years to completely 'top her up.'
There are other things you can do but at the moment the b12 and reversing any damage is paramount.
Using the blood serum test to judge the effectiveness of treatment is just stupid. I am becoming increasingly concerned at the number of studies claiming to show that high dose oral (usually cyano) tablets (swallowed, not sublingual) are as effective as injections. I think there is a danger of the current one size fits all treatment (hydroxo injections in the UK) being replaced with a new cheaper and simpler to administer one size fits all treatment of oral high dose cyano tablets.
For what it's worth, back in 2007, when I was desperately trying to find something to keep me going between my 3 monthly hydroxo injections, I tried a number of options including high dose oral cyano (2000mcg daily), daily sublingual 5000mcg methyl and daily 3000mcg dibencozide and none of them did anything for me at all with the exception of cyano patches which gave me a boost for 2 or3 days but were far too expensive to use on a long term basis. There are many more options available now than 7 years ago but to experiment again would mean stopping my fortnightly hydro injections and risk crashing and I am not prepared to do that.
Hi Engels, please can you tell me how you manage to get hold of fortnight injections of hydroxo? Thanx
I buy hydroxo online from Goldpharma and needles from Medisave and inject myself, as do many others.
Thank you for yr reply, is that in uk? Please could you send me the website, as I'm only lasting about two weeks and my Dr refuses to give me any more hydroxo
Please could you tell me how much the vials of hydroxo cost, I have looked at goldpharma.com and I need to register, any info you could give me would be appreciated, delivery times etc
You don't need to register. Just say yes to the initial declaration and then put hydroxocobalamin into the search box (top right) to bring up the options. They usually have three or four different brands in stock in various pack sizes. Delivery usually takes about 5 working days.
Using the serum b12 test to assess effectiveness highlights just how ignorant they are not only of the condition but also of the metabolic pathways of the illness. If you consider that it is 50 years since it was discovered (in science!) that this illness does not follow a pathway that starts with anaemia - yet they are still devising tests and treatments around the assumption that it does - then things have gone pretty haywire somewhere along the way.
It was quite clear from the responses to the study, not only on the responses page but also on the credits page where Drs could review their knowledge of b12, that they clearly do not understand the illness. They are still looking for anaemia. And the one test that they 100% rely on, tells them we haven't got anaemia or that anaemia is treated.
Anyone you speak to either with medical circles or outside - thinks b12 deficiency is a blood condition and it's easily treated. And then the serum b12 test is used in research to reinforce that belief.
Doctors on the BMJ saying 20% of patients don't have b12 deficiency - according to the serum b12 test, one would presume?
It's shocking that GPs are waiting for symptoms of anaemia, which is the late stage of B12 deficiency, before treating.
If most patients have to wait on average at least two years for a diagnosis (according to the PA Society), they are then in danger of developing irreversible neurological symptoms.
Yep. But everybody thinks the anaemia precedes the neuro - which is why I was thrilled when UKNEQAS put out the alert about treating neuro symptoms instead of waiting until the patient is deficient - because by then, for many, it is too late. I just couldn't understand why everyone else wasn't thrilled (I'd insert an emoticon here if we had them!)
If you look at the V Herbert Stages of B12 Deficiency that I've put up you can see that stage 2 is compatible with serum b12 levels being lower than 300pg (I think) Spend a year in that category and you are in trouble. Move on to stage 3 and by the end of that you aren't in a fit state to care if you make it to stage 4.
I emailed the UKNEQAS alert, together with NICE protocol for neurological symptoms to the surgery to support the case for more frequent injections - still waiting for decision,
Just want to say how much all the links, info and support here are appreciated in the battle for diagnosis and treatment. I'm frazzled after three months of fighting so God knows how others feel if the average time for diagnosis is two years!
This UKNEQAS alert certainly is a huge step forward in helping GPs understand how serious the problem is. So many, many thanks Poppet for posting it.
I wasn't familiar with UKNEQAS (live in US) so googled and found some information. Could you please tell me if the alert you're referring to is more recent than that of April 2013? If so, please direct me to the post referred to or a link. Thank you, I appreciate all I learn here.
This is the link for April 2014
ukneqas-haematinics.org.uk/...
but I think it's worse than the 2013 one.
The BMJ article is the thing that is getting people talking because it explains why the anaemia is the final symptom to present and not the first.
I get it, thanks.
Not only that but the serum b12 test is so designed only to pick up on a deficiency relative to when the anaemia appears.
To complicate matters, some people never get the neuro and cellular problems, they just get anaemia. Yet ironically, these days those people are the first to get picked up - because anaemia is so easily identifiable on blood tests. Therefore it is 'quickly and easily treated.' Which the anaemia aspect, is.
Yet these same people don't appear to have the severe neuro problems that others do.
And then we have the further issue that in many cases the anaemia is masked - we don't know how many people have neuro with anaemia but aren't considered in any kind of danger zone because that anaemia isn't appearing on blood tests.
By the time most of these people get b12 treatment they've got permanent neuro damage - but that isn't recognised for what it is either.
Focusing everything around anaemia is the cause of many problems. People die of neuro illnesses all the time. Whether that be dementia to Parkinsons - yet people with neuro damage relating to a b12 deficiency don't have it taken seriously. How many of the people with the 'recognised' illnesses are actually b12 deficient patients, no one knows. But if they only raise their blood levels to treat anaemia, then the figures could be frightening.
The other contradiction is that the anaemia is on one aspect seen as being end-stage (so you would presume all the neuro damage had occurred by the time the anaemia appears and so these people would be paralysed vegetables with irreversible nerve damage) yet doctors look for the anaemia as an initial stage and treat it to prevent neuro damage.
So many contradictions it is clear the nature of this illness needs intensive investigation.
... and not only that, because I'm on a ramble - how many of these other tests are incorrectly set?
I've looked back at my notes and 25 years ago my MCV hovered around the 99 mark. Usually 99.1 - 99.9. Want to bet I had a b12 deficiency even then? I was never tested. But the high range is 100. Incidentally, these tests were done when I had pre-cancerous cells. - Which, of course, I had to have an operation for and a general anaesthetic!
There is too much live and die by these blood tests and many haematologists appreciate that they can be influenced by other factors and are never to be relied on 100%. But I very much doubt doctors realise this.
• in reply toPoppet11
What is actually considered anaemia? When your HB falls below the ref rang? I know my MCV was 105,5 but HB normal (Hb 132), my serum B12 way to low (serum B12 86 ng/L = 63 pmol/L ), my GP said but you are not anaemic. He did have a blood smear done (besides other tests and liver function, questioning alcohol abuse etc) and from that it was obvious I most probably was not only B12 def but also iron def, but no ferritin tested. Its all so hard to understand see:
patient.co.uk/doctor/periph...
Poppet11• in reply to
It is, Marre. We have the contradiction that Drs sit there and read 'normal' or 'not' - with all blood tests. Yet most of these tests, whether related to b12 or not, are not set in stone. They all have certain levels of accuracy that should be taken into consideration, they have specificity and sensitivity, they are influenced by other factors..... the list is endless. Then we go on to A should be interpreted dependant on test S etc, etc.
I don't know, but the words 'dispensing doctor' seems to spring to mind these days. They aren't diagnosticians - they read the results and dispense accordingly. How many of us have sat in front of doctors with visible injury in one form or another but have told been told it's not a problem because our blood levels are normal? Or, like you, shown an abnormal blood result but not had it further investigated because blood test X didn't denote it?
I'd like to know, if doctors had no blood tests to rely on when diagnosing anaemia, how many of them would have diagnosed us as anaemic purely going on the physical characteristics - and who never were diagnosed as anaemic via a blood test.
I have photos of me when I was still undiagnosed and just looking at those comparative to how I normally look, you can clearly see I was anaemic.
Wikipedia don't do a bad description of megaloblastic anaemia - yet you can see almost immediately that folate will mask it. So yes, it is an indication that the DNA synthesis is impaired but how easily it is hidden.
I'll put the link in because it's late and I'm rambling
en.wikipedia.org/wiki/Megal...
So here's a thought. We all think of folate masking because of supplementation - but what if you simply have a good balanced diet? What if you have a malabsorption problem but are taking in plenty of green veg and fruit? Are you actually at higher risk of masking a b12 deficiency problem simply because you eat well? Of course then you have to take into consideration all the supplementation that is contained in foods to make sure we get our RDAs.
What I noticed, prior to getting the b12 diagnosis, was that when I started supplementing with iron my next blood test showed hypersegmented neutrophils. The conclusion must be that I was iron deficient and in my case that at least was masking the b12 deficiency. I had a microcytic masking a macrocytic. I do believe though that my balanced diet and eating of green veg in particular, added to the problem.
Whatever, we can see from the description that the anaemia is an indicator that the DNA damage is already taking place. How long it stays hidden in some people is anyone's guess. Yet I think in some people it isn't masked to any great extent, it appears as an anaemia, is recognised immediately and it gets immediate treatment before neuro damage is permanent.
Don't we see this when that route goes wrong - when people get the anaemia identified and they get folate and not b12? Their symptoms just get worse.
The medical profession, unfortunately, simply reverse the anaemia and think the neuro damage is also reversed. A really simplistic mind-set if you think about it - you damage nerves and if they can be repaired, it takes months if not years - why would we think that a few b12 shots would improve this situation? If it were that good surgeons all over the world would be clammering to use it!
Ooh, so much we don't know!
I have also always eaten a lot of veg and my folate level without supplementation was about 12 (3-20). Looking back, despite being very fit and active, I suspect that I had been B12 deficient for many years before diagnosis and wonder whether my folate level had been masking some symptoms.
On the course module of the article page, one person (although it's not there now, I think they must get pushed down) had said they had seen a distinct rise in b12 deficiency in the last few years. Folic acid food fortification?
The food fortifications are made on the assumption that people eat badly. But what if you don't?
... and also to add - it's almost certain I was iron anaemic as well. I couldn't prove it because no one would do either an iron or ferritin test because my FBC was in range, but not only did I show hypersegmented neutrophils when I start with an iron tonic but 9 months later when I finally got a ferritin test it was still only 50. Not too great after 9 months of supplementing (and the ferritin test is quite unreliable also!)
Just looking at the reviews of the module on the CME page and one Dr states "useful module has alerted me to more subtle problems and that I am currently under-treating in the initial phases."
Okay, I'd have preferred the full stop to come after 'under-treating' but it just goes to show the effects an article like this can have. It only takes one doctor in each practice to read the paper and go back and tell the others for the whole protocol to change within that practice.
I don't know whether the paper will make it into the print version of the BMJ but I hope so because it has a weekly circulation of 122,000 - what an opportunity to put at least some of the problems right under the nose of doctors. (full article reads at the moment stands at 1,490)
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