Hi Ellis, many thanks for the informative reply. I looked up the IF antibodies last night after I wrote to you and read exactly what you've said here. I've also got a copy of "Could it be B12"? Very interesting stuff.
I know what you're saying about the long list of potential symptoms. Diseases like this are a curse for hypochondriacs! Of which I'm fortunately no longer one. Although I do go through an OCD checklist when I encounter a potential disease that fits my symptoms, I do tend to dismiss it if there isn't enough 'unusual' symptoms to fit the bill. If it's all generic stuff, like tiredness, depression, aching joints, I have come to realise 'No, not me, too commonplace'. But this B12 one is hard to dismiss because things like tiredness really are a major symptom and not entirely to be disregarded.
Believe it or not, the symptom which screams red flag to me is, ironically, my TN. It has never made sense to me. I've never done anything which might have caused mental degeneration. No smoking, drinking, recreational drugs. I'm a big scaredy cat and would never do extreme sports that might bang my head. But I have had a struggling memory since my mid-forties. And even before that great tracts of my past were completely forgotten by me. I was, and am, always amazed by my partner who can remember stuff we did ten years ago, dates for when we lived in what house, while I remember none of it. I've always laughed, a little uncomfortably, about my similarity to my grandmother who had an atrocious memory, but been secretly afraid of getting dementia like she did. I have been plagued with a downward spiralling depression all my life which I have never had treated and never even discussed with a doctor because as soon as 'crazy' enters the equation your credibility just walks out the door. Nothing you ever say in a surgery will ever be taken seriously again. It has also often felt inexplicable to me, although I appreciate this is part of the nature of the complaint, but it really has often sprung out the blue with me, literally as if the balance of my brain had just shifted for no good reason.
But also my mother couldn't give blood. Unfortunately, as she 'didn't get ill' (it was a need to appear superhuman – don't ask), it was never discussed in the household, but I think she had some vague complaint called 'anaemia'. And her mother, my maternal grandmother, had dementia then Alzheimer's. And she was chronically forgetful, with an atrocious memory, since her fifties. Then there's my restless legs. My sore toes that often send shooting pains up my feet and legs. Nightly leg cramps. My clusters of days where I would get incredibly dizzy and feel like the room was a ship and I was going to fall over. They would sometimes get so swoony it was actually pleasant because they felt like they turned my brain off and I would just go limp with them. My chronically dry skin and nails with deep ridges in them. And the tiredness and leaden arms I got while 'dieting' (it was enforced by gallstones) for a year and a half with no dairy or meat or eggs when I had zero strength and couldn't life a shopping bag or sweep a floor. That arm strength has never really returned although it's almost two years after surgery to remove the gallbladder.
Then, of course, there's the lifestyle 'mistakes' I unwittingly made - taking proton pump inhibitors, using nitrous oxide (only once, in surgery, but later in life, close to other things on this list, although it may also have been used in the more recent surgery I had under general anaesthesia), a gastric operation, a year and a half without dairy or meat, vegetarianism followed by veganism. The list goes on and on... I've almost set myself up for it, all the time thinking I was doing the right thing, health-wise.
Anyway, this is all conjecture – and very long-winded, sorry. I'll get the results back midway next week, but I must admit I've never been so keen to get test results in my life. I don't know why, because the chances are even if I am deficient I can't fix the TN now anyway. But I can't lie - I have to confess that it really kind of gives me bizarre hope for the first time in ages. I half think if 'I can just treat this, I may be able to improve the TN, or at least give myself a period of remission'. Probably just wishful thinking, but hey - have to have something to hope for.
At the very worst, I will have an explanation – worth it's weight in gold. I think doctors underestimate just how much people need to understand their illness. It's absolutely crucial to me that I can make sense of things. I always have to know the why. I'm not one of those people who can just accept the great man coming and telling me 'This is your illness, this is what we can do. Now take the drugs and go away.' I have to know what's going on, feel proactive, take charge. I have to feel in control, and this disease (TN) is awful in the way it takes control away from you. That word incurable – what a nightmare.
My biggest worry now is that I'll be in the low range but it will be officially normal and I'll have a battle convincing my doctor that I should be treated. Still, he's reasonable bloke and if necessary I will just bombard him with photocopies of salient facts form the B12 book! I shall wear him down by sheer repetition!
Sorry, I have banged on here. I tend to stew on things and not share them and then when I get an opportunity to talk to someone I offload all my thoughts and worries. Thanks for being a good listener!
Chancery
Ellis said:
Hello Chancery,
Intrinsic factor is in your stomach and is what you need to absorb B12. Some people don't have the IF and are therefore deficient on B12.
I think for me it must be about 8 years between diagnosed B12deficiency and TN diagnoses. But as I said, I was deficient long, long before then. I can't absorb B12. Therefore I must take shots (lifetime). There is a difference between being deficient (not be able to absorb) and lack of B12 due to diet or other illness.
Testing for B12 levels in your blood once you are taking B12-shots is in my case of no use, because the levels in my bloodstream will be high anyway (due to the regularely shots I must take).
For you it's important to get your results back first, THEN you can tell if you are looking in the right direction. If your B12-number is in the middle or on the high side, the chances of deficiency are very low. If your B12-number is on the low side or middle-low side, it's a good thing to be aware.
B12 deficiency has a very, very long list of symptoms. You don't have to have all of them to fit the bill. Thing is they can slowly creep up on you so you're used to them and things seem normal to you. On the other hand, the list is so very long, that there are allways a couple of symptoms on it that will match you perfectly.
Therefore: (like you said) wait for the results of the B12 test first, if low, then take the next step. If High or medium high, B12 is highly likely to be okee.
Feel free to ask me any questions,
Take care,
Ellis.