I have Pernicious Anaemia and have been struggling with symptoms returning earlier and earlier. I am now at 8 week intervals. I asked to see a haematologist. She was singularly unpleasant, and had a real problem with myself and my wife having obviously done some research and that as a result we were well informed. She grudgingly agreed that the blood tests are rubbish and not to be trusted and then in the same breath declared the reading to show me 'swamped with enough B12 to last 3 or 4 years'. My reading was in the 800's. She also said that even though I have enough to last 3 or 4 years, I should continue to have a jag every 8 weeks, so she seemed to be at odds with herself! She told me bluntly my returning symptoms were NOT due to B12 deficiency but were more likely to be low blood sugar. We decided we would be prudent and follow her advice to add, and spread, a few more calories into my diet, rather than dismiss what she was saying simply because she was so unpleasant. So, for the past 2 weeks I have done what she advised, and added a few more calories (about 300 a day) via nuts, lucazade and the odd biscuit. It certainly seemed to help but now I see that I have put 4 lbs on in weight and my 'fluttery' tummy is just beginning to come back again. My next jag is due in 1 week. Can anyone tell me if a lack of B12 is also capable of causing a drop in blood sugar?
low blood sugar: I have Pernicious... - Pernicious Anaemi...
low blood sugar
Yes. It can cause a drop in blood sugar.
However, the fact remains that the haemo is talking rubbish when saying you have enough B12 to last you x number of years.
All these so-called professionals are doing are making fools of themselves now.
I'll say it again, B12 levels after treatment commences are no indication of how effective the treatment is being. Underline it. Highlight it. And try not to put any profanities in your correspondence. Which I find increasingly difficult.
Zip down to the Royally Upset thread. Find the link that's been posted, print it off, find that bit I mention and send it to the haemo. Don't expect a response - they won't admit when they've got anything wrong.
The sign of true fool.
Thank you for your prompt reply. I have indeed printed out the document in the royally upset thread, dusted off my dictionary and sat down to read it thoroughly! Most of it I 'sort of' understand. What I think I am going to need is something that comes from an irrefutable source (a well known professor sitting on a cloud would be great!) who states categorically that PA can be a cause of low blood sugar, and that the only really reliable indication of low levels is the patient himself rather than the tests. This document goes someway to stating the second but I can't find any mention of the first. (or have I missed something?)I am as certain as I can be that my GP and the Haemo will laugh out loud at me and summarily dismiss me if I can't do this. I have now 'treated' myself to a blood sugar measuring system in order to find out exactly what she meant by 'low' levels as I recall her saying 3.5 and my wife thought she said 5.5. If it was 3.5 why hasn't our GP picked that up I wonder? I have considered buying my own supply and have gone to sites of companies in Germany that have been mentioned on this site, but there is a great long list of hydroxocobalamin ampoules and I can't readily see which I should be going for, and I don't know where to source needles from, or should I tap up a local druggie?!
I think the problem is that we all, at least initially, fall into the same trap - trying to 'prove' to medical professionals we need care.
I'm not saying there is a solution other than treating yourself - what I am saying is that our medical system and the professionals which provide it - is in chaos.
Blood sugar aside, you probably aren't even getting the correct treatment for a B12 deficiency. The current treatment in the UK is unproven. But they won't let us have sight of the 'proof' that they say they have got. Which is rather odd because normally evidence is referenced.
The hardest thing about this board is trying to explain to people "Well, yeah. You probably have a serious illness but you are on your own."
Just saw your last bit about the druggies - actually, they are, sort of, the best place not only to get equipment from but to dispose of sharps. You can contact your local illegal drug centre and they provide needles, syringes and official containers which they will dispose of. I had to register as a drug user to get access to disposing of sharps - now ain't that stupid?
If you want to buy needles/syringes then, if you decide to inject sub-cut, like diabetics do, you can buy veterinary products which are exactly the same as human products. Cheaper too.
Many thanks for this, you are a poppet!!! Did you know that the word poppet was used to describe a small toy doll, hundreds of years ago?
Its depressing isn't it? Just a few days ago I read a very interesting piece in the paper which reported a suggestion form some eminent department or other. Apparently they think that it would be a good idea to fork out £15000 a year giving preventative drug therapy to gay men, to prevent HIV (when all they really need to do is buy condoms),and yet we can't get a 40p injection? I don't have the slightest problem with gay men or women, but i do have a problem with a society willing to spend £15000 per year on one person and won't spend 40p per injection on others! Even if it were injected on a daily basis it would still only cost £146 per year! GGRR!!
Ooh, am I a peg doll - I've got that kind of figure!
I will admit to being at a loss as to explain what is going on in medicine at the moment.
Yes, I can understand the influence of Big Pharma - whether that be on drug sales or research or whatever. What I cannot for the life of me get around, is that we sit facing medical professionals, who we believe have entered the profession to help people, and who sit there sniggering like a loon.
And they do snigger and they do smirk and they are pig-ignorant. Yet they are talking to the very people they profess to want to help.
They ignore physical symptoms, they deny medication, they deny care, they will not look at valid research.
Apart from accepting the fact they only entered the profession as a means of self-aggrandisement, I cannot think of one good reason why they are doctors. Clearly without holding a blood test which 'proves' a particular patient is ill - they have no idea what they are doing.
My wife's mother is a pyschiatric Nursing Tutor with some 32 years in the NHS, after training in the 60's. She took early retirement in 1997 and tells me that anyone who thinks these problems are a new phenomenon is sadly wrong. The cracks were there in the 70's!!! She said she feels trapped that she has a number of medical problems, requiring doctors 'knowledge', all the while knowing that they are sometimes no more knowledgeable than the patient and very often less so, but that to argue is a waste of time!!! And to think we are still 'the envy of the world'. Anyway, back to my original question, the low blood sugar. I have purchased a blood sugar monitoring system and will test myself regularly, both before and after meals, during fasting and before and after my next B12 jag to see if we can determine what happens and when and try to find out if we can give some kind of rudimentary proof that my symptoms are due to lack of B12 rather than low blood sugar. Wish us luck, and thank you once again for your help.
I saw the logic behind the low blood sugar and B12 levels only last week - but at look that much stuff I can't remember where I saw it!
Interesting to note your mother-in-law said the cracks were showing in the 70s - makes you wonder where all this is going to end up.
It'll also be interesting to note what happens with your sugar experiments. I only wish I'd bought pH sticks for urine testing when I was ill.
Sadly, I think you've hit the nail on the head with 'self-aggrandisement' as the main motive for entering the medical profession. It sure as hell isn't compassion for one's fellow humans; status and power over the vulnerable are what it's all about. Even a basic sense of scientific curiosity seems lacking in most of the medics I've consulted over the decades - hence all our problems with treatment.
...and I think you hit the nail on the head about them lacking curiosity!
What happened to the enquiring mind?
Why are they so disinterested?
To be honest I think that's why now, I don't mind putting them in a position where their skills and knowledge are challenged. At one point I was giving the benefit of the doubt - but I have seen no compassion or humanity from any of them.
Most people on this board haven't. There must be thousands of us - all being dismissed by the medical profession.
I see now why my GP once said to me 'there is an epidemic of people with emotional problems' - because she wouldn't recognise if they were ill until they stopped breathing!
Hi Shevie,
You will find a lot of info in this topic about what other people buy and where to get needles. I depends on how you think you will self inject, in a muscle (IM) or subcutain, what size of needle you may need etc.
See:
healthunlocked.com/pasoc/po...
I inject IM buy my needles from:
medisave.co.uk/consumables-...
Many here buy online (I buy at pharmacy in Spain, you can buy B12 in most EU countries OTC, just not UK and Holland). They buy from:
Injectable B12.
goldpharma.com/article/1/ Search for 'hydroxocobalamin' and select: B 12 depot-rotexmedica 10 amp. (10x1ml)
mycare.de/ Search for 'hydroxocobalamin' and select: B12 DEPOT ROTEXMEDICA (10x1ml)
I learnt at my surgery how to inject, but if that option is not open to you perhaps you know some one who is a GP/Nurse/Vet? That bit is hard, I do not recoomend you inject IM without having been shown buy some one who knows. Practising on an orange is good, you get the feeling of how to inject slowly etc, how it will feel.
I hope this helps you a bit,
Kind regards,
Marre,
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