I am very new to the site and would really appreciate some help and advise as I am terribly confused. My story going back last 2 years is a long one but I will give you a readers digest account.
I am a 60 years old who was a very successful business lady for 30 years running my own recruitment business in Bond Street. 2 years ago I suffered severe trauma when my ex boyfriend of 10 year defrauded me of a huge sum of money and I ended up homeless without a penny. Lucky I have some good friends who helped out. Anyhow I had a complete breakdown and was put on a high dose of efexor antidepressants. I then got diagnosed with breast cancer but luckily it was only a tiny 2 cm lump which got removed and had not spread to the lymphnodes. I was treated with 15 sessions of radiotherapy but refused the awful poisonous medication they wanted me to take for 5 years. I had another mammogram recently and thankfully all clear. However for the past year my symptons are severe depression, I cry most days, and can not bear to be in social situations, the polar opposite to the old me. unbelievable tiredness every morning after 10 hours sleep, brain fog, always losing things,. Awful memory loss my son worries I am starting dementia. Then almost a year ago I had the most awful vertigo attack where the room was spinning awful vomiting and diarrhoea and I just had to lie in bed without moving for hours. This then became a regular occurrence and I went to see a ENT specialist who diagnosed me with Ménière's disease. I had my hearing tested and found I had lost 50% of hearing in left ear so I was fitted with a hearing aid. I also started getting tinnitus which is with me almost constantly. The medication I am on for the vertigo attacks Bethastine are absolutely useless so I am seeing my ear specialist tomorrow morning as the vertigo attacks several times a week are so debilitating.
A few weeks ago I went to my GP saying I wanted to slowly come off the depression medication as I am convinced this has caused a lot of my problems it has so much awful reviews on the Internet and so many of the symptoms are the same as b12 deficiency.
He took lots of blood tests and thought my B12 was a little low so I had to repeat the test. This got me onto looking into B12 and I realised that this is probably my problem for all my symptoms. I found your amazing site and bought Martyn Hoopers book on kindle. My serum test was 160 so when I went back to him I had a pile of information to give him to read and I told him I wanted to start on the loading doses straight away and gave him this. Even though he said my reading was not that low!!! I am also waiting for a result for PA but as you all know it is not a reliable test.
I have had just 2 injections so far and he wants to see me at the end of them to review. After having my first injection I woke up the next day feeling more energised.
My symptoms are, tiredness, depression, awful memory loss, brain fog, vertigo, dizziness, tinnitus, and recently have started to have problem with bladder control. I don't have any pins and needles. Can you advise which of my symptoms are neurological and at the end of my loading dose what should I do. I am just so confused and feel like I have gone mad. I am sorry this letter is all over the place I am so tearful putting it down on paper. I have also sent a note to my doctor asking for copies of all my blood tests that I had done in the last year as I just need to take control of my health if I am to get better.
Thank you all in advance for any advice.
Bee.
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Sukiwarrior
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Okay, let's start from scratch by explaining what b12 deficiency is, and, more importantly, what it isn't.
In the UK b12 deficiency is inherently linked with anaemia. Forget that. If fact, if you can for a moment, forget about blood altogether.
You need b12 to enable several metabolic pathways to perform properly. Without it your cells and nerves are affected.
On one of the pathways b12 kicks off the process of converting something called homocysteine so DNA (cellular) functions don't dysfunction. If DNA dysfunctions you have a problem with cell regeneration.
This DNA dysfunction which affects all cells will, because blood is cells, result in abnormal bloods. Or rather it 'should.' But because this blood abnormality can be masked by several factors many times it does not show in the blood.
You then have a situation where you have all the metabolic pathways involving b12 dysfunctioning and nothing shows in blood tests. This affects your nerves and cells and goes on undetected.
You see how little it has to do with anaemia?
This is why you are now getting warnings up from UKNEQAS and the like, saying, surprise, surprise, that some people are getting neuro damage without blood indicators being apparent.
It is a good warning, but it comes a lot too late.
Your doctor, I would like to bet is of the old school and still thinks of b12 deficiency as being a blood condition rather than a cellular or neurological condition.
At one point it was thought that the anaemia came first in the process - so many doctors, presumably those whose eyesight was so bad they couldn't actually see patients were very ill - thought that if they stopped the anaemia then they stopped the neurological damage.
The blood tests (says she, sticking her neck right out) were designed to identify when the blood was affected when it was believed it was the START of the process, so the test levels are set too low and the treatment is set to reverse only the blood condition as if it were at the beginning of the process.
I understand that if the test levels were set at when the DNA changes begin in the CFS then the b12 serum levels would begin showing a deficiency at around 500ng.
Hence, your doctor believing that your serum b12 level is a little low - is talking a crock of unowot.
Sorry to hear what a difficult time you have had. Your memory problems and bladder control problem are neurological possibly. Psychiatric symptoms such as depression are also possibly B12 deficiency related. Try to get your GP to give you alternate day B12 until no further improvement. BCSH advise review after 3 weeks. This may be difficult but ask your GP if they will try for even just 3 weeks. That will get you a week longer than most GPs will be willing to try. "Not too low" in an inaccurate test is a common phrase and not justification for not treating! I was told that too and had to go to 3 GPs before I finally got on the right alternate day treatment regime (albeit the 3rd GP was also very reluctant). Also consider supplementing yourself. A lot of people self inject, take sublingual, nasal or patch supplementation as well as GP regime.
Glad you have noted an improvement already. That's a good sign. I noticed just feeling more awake and alive after starting B12. Things have continued to improve for me so hopefully you will also experience that.
Sorry didn't answer second qu. Try to get your GP to put you on min 2 monthly regime for neuro maintenance if you can after loading doses for as long as possible (min 3 weeks) alternate days. Push for more if you can or supplement yourself.
Is there anyone who can come to see GP with you? I found that helped me.
Lots of great information above! It's good to see there are new guidelines too.
I am still learning about b12 but learned a lot from Martyn Hooper's talk yesterday. One very important message was that the current standard b12 test gives a false high result in 22-35% of patients with b12 deficiency depending on the make of machine being used. That is a staggeringly high error rate! It certainly goes part way to explain why so many people get no diagnosis. Also up to 90% of the b12 measured is inactive so for those people the test is not very helpful.
Another interesting fact was that the current normal RDI is based on only 7 patients with pernicious anaemia!
I expect you already know all this if you are reading the book
I hope you get treatment soon. Clearly this is making you very ill!
It could be argued that all of the symptoms you describe are neurological.
B12 plays a vital role in cell reproduction (it may have been a factor in the cancer). It also plays a vital part in maintaining the layer around nerve cells that helps them to function properly.
B12 affects multiple systems in the body, which includes the autonomic system - those things that you do subconsciously/semi-consciously - which is where failing bladder control would link in.
Because there are a lot of interlinked nerve cells in the brain it can manifest itself as anxiety (simplistically I think of that as short circuiting in the bit of your brain that deals with fear), and depression, withdrawing from society and personality changes ... as well as probably being part of what is happening with the fog and the memory loss. Lack of B12 will cause lessions in the brain which leads to it being confused with dementia's such as alzheimers. Left untreated for too long this damage becomes irreversible so it's important that you do get proper treatment if you are starting to experience the memory loss.
The lack of balance is also most likely to be down to neurological causes - even though you aren't experiencing pins and needles you may have lost some of the sensations in your feet because the nerves aren't working properly - so that your brain is getting confused because one of the normal ways it has of checking balance isn't working. The dizziness and tinnitus may also be related and indicate that the nerves in your ears aren't working as they should.
It is now acknowledged that there isn't a good test for B12 deficiency and that people can be symptomatic well into what the labs report as the 'normal range' - as Poppet says - some experts think anything below 500 on B12 Serum should really be regarded as indicating that B12 may be low.
As you are aware B12 deficiency is caused by an inability to absorb B12 properly. Although PA (meaning presence of antibodies) is one possible cause of malabsorption it definitely isn't the only one ... changes in the acidity levels in your gut as you get older are another significant cause though a lot of the guidance for doctors still seems to focus on PA being the most likely cause. I mention this just in case the PA results come back negative, though it should also be noted that these tests themselves are, as Carolyn and you yourself commented, prone to error and not very reliable.
B12 also plays an important part in the maintenance of processes that clear some toxic by-products from your system so if B12 is low then these will be high - MMA and Homocysteine - so can be used to clarify where a B12 Deficiency is suspected.
As you will have had loading shots the GP should take this into account when evaluating any future serum B12 results - ie they should be expected to be high. If they aren't then you definitely have a problem somewhere. If the reading is above the normal reference range your GP may try telling you that it is too high and you shouldn't have any more B12 - there is no concrete evidence to support the theory that too much B12 is bad. Hydroxocobalamin is used as treatment for cyanide poisoning (5000x a loading dose over 15 mintues).
Another thing to keep an eye on is your folate (B9) levels as the body needs B9 to process B12 properly and it may be a good idea to supplement with folate in conjunction with B12 ... and definitely good to look at results for this when looking at results for B12
Thank you all for your excellent advice. I am hoping to see my hearing specialist tomorrow morning and I shall let her read all of this. She is really nice and feels very frustrated that she has been unable to find the cause so far for all my dizzy episodes so perhaps she can advise my GP to continue with the injections until I feel better. Had another dizzy spell this afternoon.
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