Well, not as bad as I expected but nevertheless, very tiring. Clock ticks so much faster than I can think.
Had 4 blood tests - FBC , Active B12, MMA retest, and one other that I've already forgotten ! Also got a follow-up appointment in 4 wks, so will get results then. She also suggested listing any questions that I might want to ask.
The haematologist that I saw was not the one that wrote the letter to my GP, but I still asked her about the "animal data" that seems to suggest some sort of harmful effects of B12: she wasn't sure where that has come from. (It's on my list already for next time.)
She talked about my diet- because I have been a vegetarian for 35 years. She asked what I had to eat last night, and what supplements I take. I think my diet is quite healthy, she said there may be absorption issues - I said that could equally apply to a diet with meat in it.
She didn't like the look of my tongue, I could tell (but at least she left the computer and examined me).
She asked how much I drink, then whether I used to drink too much.
She talked about how many cigarettes I have smoked in my life (no congratulations there for having given up a year and a half ago !).
(Judging by the line of questioning, I must be looking particularly rough today)
She talked about how highly addictive B12 is, and how Americans are using it recreationally because it makes you feel so good (?).... I'm assuming she is talking about healthy people, because otherwise someone's been watering down my vitamins!
She said "Don't we all?" when I said I felt tired (in response to question about symptoms), I asked "Too tired to do your job?" - Yes, I was a little stroppy then, but that's because I'm suffering from mood-swings - another reason why I'm unable to do my job. (Luckily my partner was with me because at this point, I'm usually crying.)
She asked why I had had 3 months of ferritin and folate: told her I was at the low end and about my hair falling out and gums bleeding. She didn't say anything.
She thinks 196ng/L in February 2016 was not low enough to cause all these symptoms, and wonders if my brain problems: memory, cognitive etc. might not all be due to smoking (possibly lack of oxygen to brain?) She wants the neurologist to do a head scan on 5th May- I'm happy with that.
She thinks 2 injections a week for Functional B12 deficiency was far too much, and is happy to keep me on the 1 a month which is my current regime, although both me and my partner have pointed out that I'm already deteriorating (at three weeks and counting!).
Not much time this visit for my questions, but without the test results, and with it being a first consultation, there is always a chance for me to talk next time. She took a copy of my symptoms list.
So not a disaster. I have, in my folder, Turner and Talbot report, BCSH page 8 and Martyn Hooper's notes on treatment, Stichting B12 Tekort: Misconceptions and safety of B12, NHS Choices on Functional B12 deficiency and lastly, symptoms lists: from PAS, B12deficiency and 100 symptoms list. Well armed, so thanks for all your help. Just having these made a difference. Having them next month, when B12 levels inevitably will be found to be high, will be vital. Love you lot.
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Cherylclaire
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have been wondering about the animal reference and can't help wondering if the haemo has been confusing folate and B12 - there are studies showing that feeding mice high levels of folate can induce methylation problems but I'm not aware of anything similar relating to B12 - can sort of understand confusing the two are very closely linked in the world of haematology.
Sad to see the myth about addiction coming up - one of the essential characteristics of an addiction is carrying on with a behaviour although you know it is harmful - an characteristic which doesn't apply to use of B12.
Animal studies: I will ask about that again next time: gives her a chance to go back to the consultant who wrote to my GP and check their source.
The addiction thing seems to be at the root of all their suspicions: consultants, GPs, nurses. My first injection ever was in February 2016, at which point I had never even heard of B12 and didn't realise what would happen next. Didn't know I would have to have more than a course of 6 injections, didn't know my symptoms were symptoms, didn't relate it to my original problems at all, didn't know that I would get a lot, lot worse ......and certainly never dreamt that, 14 months later, I would still have all the original problems. Now I know a lot more, but it makes no difference because no-one who can help has read the same research (such as it is) -or believes you anyway because they think you're an addict !
I'm going to ask what list of symptoms they are working from next time; I noticed when I was being checked that she looked at my nails and that's a first !
The addiction thing irritates me. If it's so addictive, why is it that I have to talk myself into taking my injection every. single. time? Wouldn't I be eager to have it for the supposed high? And believe you me, if it were possible for americans to easily get injectable B12, I would not have spent years struggling to get the right level of treatment. I invite that doctor to come on over here and see how 'easy' it is. Grr.
It's also a shame that you have to wait four weeks to get your test results back. Do be sure to request print outs of them for your own records though.
In your folder do you have a copy of the BMJ B12 article and UK NEQAS B12 Alert? They emphasise the importance of treating patients if symptomatic even if B12 levels are normal range.
Thanks again, Sleepybunny - strangely, your first link has my haematologist as co-author ! ! And, yes, it IS going in the folder. World just keeps getting weirder.
Neurologist tomorrow (first time, don't know what to expect): any words of experience and wisdom? I know haematologist wants a brain scan done. Don't even know how this works enough to know what to ask ! Any help a bonus.
Having a really awful day today: everything too loud (yes, even in the library) and white noise with tingles, and fake yawns that won't stop. Hoping not to be this tired tomorrow, but won't be alone anyway.
I'd say be well prepared with B12 info and don't be shocked if neuro lacks understanding of some aspects of B12 deficiency although hopefully yours is well -informed.
I lost my awe of specialists years ago, after some unpleasant experiences and only met one neuro who I had real respect for.....the only one who considered the possibility of B12 deficiency.
Have a read of fbirder 's summary of B12 documents before appt if you have time. Link to his summary at bottom of third pinned post. Some handy quotes when faced with a doctor who hasn't done their homework on B12.
A brain scan may help to exclude some other conditions that can produce similar symptoms to B12 deficiency.
Well done for getting through it Cherylcalire...but what a dreadful thing to have to say. Wonder how many of us end up with something akin to PTSD induced by the ongoing ministrations (mis-ministrations) of our varoius doctors 😖. And believe me, I'm not 'downplaying' the seriousness or reality of PTSD - rather, it's an indictment on the sorry bunch of medics inflicted on far to many of us (with apologies to any medics out there who prove to be the exception 😄).
Drinking, smoking, diet....well, it must be your own fault...or perhaps an additional NHS B12 rationing tool (aka hip/eye surgery and an ever increasing et al)...
A consultant haematologist getting out that old chestnut..'B12 is highly addictive... words fail on that one...
Grief...I'm just a bitter old cynic...with B12 withdrawal symptoms 😖😄.
Or perhaps, Cherylclaire...it's just more crossness on your behalf (on all our behalfs')...
I have a vivid picture in my head of hundreds of us traipsing around doctors appointments with witness and document trolley in tow...you couldn't make it up.
Well done to you Cherylclaire, keep as well as you can and let us know how the next appointment goes...fingers crossed again, as always 😄 x
I'm of for a 'fix'....💉
P.s. Brilliant one liner 'too tired to do your job' 🙃😊
Wish I had, but it all goes by in such a whirl- mostly them firing questions at you while typing furiously- and brain not functioning quick enough. Shame when you wait so long for the appointment. Maybe I'll get another chance in a month, -or maybe you should come with me !
Seems to me that doctors are all to unaware of the devastating impact that unkind or hostile words can have on their patients. Dreadful. Unforgivable. Disgraceful.
.......and too old to wait all these months for such a flippant reply when I'm so desperate....still nothing really concrete to tell employers: "..turns out it may well be all my own fault for smoking/ drinking/ being a vegetarian and now my brain has irreversibly shrunk to the size of a beanburger " won't keep the door open !
Have one for me, Foggy, I'm not seeing the nurse till tomorrow !
Me thinks we are become like appellants combating a peculiar inversion of justice...all are presumed guilty of something....anything...but B12 Deficency...
Can't wait, Hidden - as for laughing/ crying, right now just dizzy floating numbness, so feeling anything would be quite good. Think I wore myself out yesterday trying not to be upset/ irrational/ weird/ shouty !
It seems so weird to me that everyone is so afraid of a vitamin...... endless repetitive tests and communications back and forth, while I quite literally pale into insignificance in front of them. And all so assertive that even my partner is starting to think that this may be more than B12 deficiency. Lonely, this.
Tell the truth, I would rather it be B12 with the hope of improvement than years of smoking, which I can't possibly undo now. [ -koff- ]
Hi everybody, I'm involved in the bodybuilding world, my hubby owns a gym, I asked him if he could find me b12, which bless him got me all the three kinds of injectable, but everybody all of a sudden wants it! All the healthy individuals that are convinced it gives you an up! I think this must be just the placebo affect, cos every shot, I try to convince myself I'm going to become superwoman! But doesn't quite work lol. Anyway if you know any bodybuilders/gyms you can probably source the b12 from them. Apparently you can still buy it in Spain?? Anybody wanting syringes you can walk into most chemists and ask for a needle pack! You don't need to order them! Does make you feel a bit like a drug addict tho
How ironic, Lizreds1 , that the very people that are making the GPs and consultants too nervous to allow us to be given the correct dose are now in a position to sell it to us instead- and no doubt making a decent profit out of it! World's gone completely tits up !
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