Since my last post I've had my blood tests but one of them which was my back up (homocystine) wasn't done properly as it has to be done put on ice and processed in 2 hours apparently. The first time this wasn't done and gone second time it was done at the hospital but the results haven't come through. My B12 has gone from 189 back up to 230. I did have a print out of my results but unfortunately my foggy brain put them 'safe' so they've disappeared! As a result my GP has refused to give me a B12 trial as everything is 'normal' but is sending me for a CAT scan and referring me to the Memory Clinic to check for early onset Alzheimers! I am so frustrated! The cost of a CAT scan alone could cover the cost of a B12 trial many many times over and regular injections for years! The tinnitus is constant, the unsteadiness getting worse and the nominal aphasia is there on a frequent daily basis, etc, etc, I know I should be grateful that at least this GP has listened to me but his hands seem to be tied, whilst all the time I'm getting more depressed about things. I'm getting to the point of deciding whether to just go ahead and self administer and see if it does start improving things or continuing to try and get to the bottom of why I'm like this. (I've been offered more antidepressants but I've refused them) And to think I'd never have thought about all of this if my mum hadn't had PA.
Yes all that money, but hey it will help exclude other things, always worth it. I had MRI (must cost lots) just to exclude things like a tumour that could also cause problems with balance and other typical PA/ B12 def symptoms. Its good to exclude things , as then you are left with just B12, the cheapest, safest and often a very suitable option. Just trying to cheer you up!
Kind regards,
Marre.
• in reply to
That's very true, and I am grateful. I just wished someone had listened to me 4 years ago though and had done this then, instead of being fobbed off all the time. What was scary though was the GP saying 'if I gave a B12 trial to EVERYONE who came back with a level of 230...' It just made me think how many people are going through stuff like this and aren't so aware. I'm ok, just needed a rant sorry
Sounds pretty much like what I went though, except I never got homocysteine tests, they only did blood serum. I ended up self administering with daily subcutaneous injections and although it hasn't been as successful as the intra muscular injections it's definitely much better than it was.
My dilemma is whether to wait and hold out to see if they can find if it is PA as in theory if I start self administering it will mask any deficiency. But I'm starting to lean towards sorting myself out and not waiting until a crisis happens
That's the thing isn't it? I waited till I got a definitive 'No'. It took a good long while though and even when I started reporting back that I was getting improvements from self administering they brushed it off as placebo effect.
I'm thinking of taking my GP hostage and force him to read EVERYTHING there is on the PAS website, absorb all the information and THEN ask him how he'd feel being brushed off with excuses all the time!
There's quite a lot of research that shows that the impact of the placebo effect is very under-rated.
My attitude - not one I have yet shared with my GP is that even if my improvement when I started to self-supplement using a nasal spray was the placebo effect it worked and that was what counted.
They will dole out expensive anti-depressants like sweeties, yet they won't give people the opportunity to try supplementing for themselves which would be so much cheaper ... not to mention the fact that I'd got to the point where I was thinking I'd have to start dropping hours etc. Even in terms of economics this doesn't really make sense - leaving people unable to support themselves or earn the living and contribute to society the way they could ... even from the stand point of taxes it's just totally mad.
Why isn't your doctor investigating the possibility of neuro/cellular damage caused when you b12 level was low?
What your b12 levels are now means nothing - anything normalises that blood test. Getting your bloods right has no reflection whatsoever on neuro damage. Speak to any surgeon or cosmetic surgeon and ask them how long nerves and cells take to heal - If they tell you a fortnight, get your nose job elsewhere! And if any doctor out there thinks that b12 can restore damaged nerves then they should be putting their ideas forward to all the people who have suffered spinal cord injuries and are paralysed as a result - according to your GP he'd have them fixed in a jiffy!
But that's the point, he's saying my levels aren't low enough to cause damage! This isn't the first conversation with a GP, I've talked to 4 different GP's in the practice, once of which said basically 'pull yourself together, you aren't anaemic so you can't have low B12 levels'! I went home and wept
Professor Smith begins to speak after about 4 minutes.... about low B12 and brain shrinkage.
Low VitD is also implicated in brain issues - every cell in the body has a receptor for VitD and Thyroid hormone - and they are there for a reason - to keep the body working....
New guidelines whereby symptoms as well as results must be considered....
But where are all these people with permanent nerve damage?
Nobody is ever acknowledged as having permanent nerve damage - everybody is always told that the cause of remaining symptoms is 'unknown'?
There is a contradiction here all the time - that there is permanent nerve damage - but then when nerve damage remains if b12 levels are normal nobody knows what's causing the remaining neurological symptoms.
Is there a misconception in the UK that patients are only ill when b12 levels are low but then they are immediately well when b12 levels are normalised?
Right. UKNEQAS have been putting out alerts about neurological damage when b12 levels are normal - and they have been doing it for 2 years and hardly anyone talks about it.
Tap in UKNEQAS b12 to google - get the alerts, print them off and tell you doctor if you get permanent neurological damage he will be held liable.
Better?
Here's one of them - I don't know whether they've took the 2013 one down - which was better (and I have copies of!)
False normal B12 results and the risk of neurological damage (Please click for details)
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”
Thanks for the link to UKNEQs Poppet11. I had forgotten that this is also mentioned in Martyn Hooper's book, "Living with Pernicious Anaemia".
I will also email this to my sister's surgery just in case they don't get the message. I am so frustrated with them. They have completely ignored my letter asking them, among other things, to keep me informed. The surgery were short with her yesterday, and asked her to come in as she has forgotten two appointments now. This Is due to her memory problems and the reason I wrote to them in the first place.
There is an excellent article in BMJ on B12 deficiency. It clearly defines that B12 deficiency is a serious condition, which is hard to diagnose because of the lack of a gold standard test, "therefore the clinical condition of patients is of the utmost importance":
"If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features".
I have e-mailed it to my sister's surgery. Can you take it along or print it out for your GP ?
This advice from the BMJ can surely not be ignored - it would amount to negligence if they did so.
At least there is now some information getting into the public domain (and medical) focusing on the fact that a stand alone b12 deficiency causes permanent nerve damage - peripheral or spinal.
All this 'you don't have PA' fable is costing people their health and lives.
Just because someone has PA doesn't automatically mean they are in a worse position that someone who has b12 deficiency. It depends on how long you've had it and how much b12 is being absorped. Being diagnosed as having PA (and the criteria is getting narrower and the tests ridiculously unreliable) only means one cause of a b12 deficiency has been identified and you MAY have more difficulty in absorbing b12 than someone who hasn't had the cause of their malabsorption identified.
Bottom line is - they both cause the same problems due to a lack of b12.
Hi Sorry to hear you had blood test problems I had the same thing. Before my 1st b12 trial my homocysteine was about 17 (above the range at the lab used). I then two years later once I had had a second loading batch (treatment for life) and requested a homocysteine test becuase I was worried about the risks it gives. The 1st test was never processed, the 2nd was not delivered to hospital in time and the third I had to drive to the hospital myself in a back pack not on ice - this took over an hour... I wonder how much this would have affected the result (down to 10). Advice appreciated. I would fight to get homocysteine and mma done properly AT A HOSPITAL- this was how I had it the 1st time and the samples were put straight on ice and taken straight to the lab. Good luck.
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