Duh......

[Lilnicki]

I am such a dipstick !

Went to my doctors appointment this morning only to find I was a week early!

Luckily (?) one of the other doctors agreed to see me , but he could only spare 10 minutes. He said my weight loss was down to anxiety, that's my B12 levels and blood count showed no anaemia, and why was I insisting I had pernicious anaemia ? ..... Sigh .......He wouldn't listen when I tried to explain those first-line tests are not that great......so pretty much a waste of time going today. I'm still going to next weeks appointment so will try and talk to them again then, and insist on a appointment with a haematologist as per the guidelines in the BMJ.

Why does it have to be so hard to be taken seriously ?

[Poppet11]

Take the BMJ article in and ask for it to be put with your records. Seriously. They won't take any notice of you no matter how bad you get - they do not understand this condition anymore than a member of the public. You'd probably get more sense out of your newsagent.

[Gambit62 Administrator]

Sorry that the saga continues. Does sound from your remarks as if the GP you saw is falling into the trap of hearing anaemia and assuming that means a blood disorder.

May be once the IF is back things might change though IF isn't the only thing that can cause a B12 Deficiency, and the problem sounds as if it might be the B12 Deficiency. Risks of B12 deficiency get worse as you get older because of changes in levels of acidity in the stomach.

How is your mum getting on?

[Lilnicki in reply to Gambit62]

Well I got a message from the lab that they don't have the right blood sample for intrinsic factor, so I've booked in with the nurse to have that done Thursday. I'm going to ask for parietal as well as intrinsic. Anything else you can suggest that might shed some light? I want to ask for active B12, but not sure if they'll agree if that's a more expensive test. MMA would also be useful, but guessing that'll also be a no go.

[Gambit62 Administrator in reply to Lilnicki]

You could try seeing if your GP will agree to let you get the active B12 test done - if you have a letter of referral then, from remarks on other posts you should be able to get it done privately at St Thomas - for about £18, if you can afford that.

It may be worth mentioning that your Grandma has been diagnosed and pointing out that this does often run in families in terms of getting your GP to listen.

[Lilnicki in reply to Gambit62]

I said today that my Nan has it, and my Mum the same symptoms..... He just said lots of people have those symptoms and it doesn't mean anything. .... PAH !

The nurse I see is lovely and really wants to help, think the GP's are just set in there ways and are trying to save money. Can't see any other reason why they would be so resistant for me to get this either ruled in or ruled out !

[Gambit62 Administrator in reply to Lilnicki]

I know it is really frustrating but I personally think its more ignorance than money. The last GP I saw spent ages with me doing everything but listen to what I was saying about B12, or be prepared to talk about B12. He is known as a caring GP and I really don't think he could be faulted on caring for his patients but the clincher was doing a questionnaire on depression - and that just made me realise how pathetic the questionnaire was because using it you wouldn't be able to really distinguish between someone who was depressed and someone who just had a B12 deficiency and that was a really scarey moment for me.

I'm not making excuses but there are so many possibilities and there is so much overlap of symptoms. I know there are a lot of GPs out there whose reaction to the fact that most of their patients expect immediate answers is bordering on pontificating rather than being able to admit the extent of their own humanity and ignorance and that's probably made worse by a culture in which everyone wants to sue everyone else ... you just have to look at the case of Dr Chandy who founded B12D ... and was investigated and put on suspension because he was treating so many of his patients with B12.

It would be nice though if the ignorance didn't include: you have to be anaemic if you have a B12 deficiency; B12 injections cure B12 deficiency (they don't - they are a treatment and people respond differently to treatments); high levels of B12 are dangerous.

I don't think that its just B12D that suffers - my brother was diagnosed in his early-mid 40s as diabetic. Dr assumed it was Type 2 because of his age and put him on metaformin. However, there is a long family history of diabetes that, is actually late on-set type 1 (don't think it was really identified much before the turn of this century). My mother (also late on-set Type 1) was involved in a study into it and identifying the particular gene involved so I was tested and know that I don't have that gene. It took ages for my brother to get through to the Dr that the reason he wasn't responding to the drugs was because they were the wrong drugs ... and if they can get it that wrong with something that is actually very well understood ... What does concern me though in relation to the family is that there is so much overlap between some of the symptoms of diabetes and symptoms of B12D that B12D may have been missed as a result. I'm concerned about my mother as she's showing all the symptoms of confusion etc that go with the brain fog ... and her father (also late on-set Type 1) was diagnosed as having dementia and reflecting back on what I know of B12D and what I know of his behaviour, I can't help wondering.

My brother surprised me last Friday by showing an interest in may be trying out B12 supplementation (after hearing someone at work going on about how they suffered before their maintenance shots ... and paying attention because I'd gone on at him about it a month or so earlier) ... so will take him a nasal spray when I go up to London. Mum is a bit more problematic so taking me a bit of time to screw up the courage to suggest she tries a nasal spray at high doses ... Might be easier to start her off when she is visiting my brother so someone around to encourage her ... particularly if my brother finds it helps.

[Lilnicki in reply to Gambit62]

Who is Dr Chandy ? I heard someone else mention that name I think. Thank you for sharing that stuff about your family. I'm hearing so much similar stuff on this page and a FB group about how people are being fobbed off by GP' s and even consultants ..... The mind boggles ! No wonder so many people are self administering drugs. Not sure I could self inject, but nasal sprays and sub- linguals are my plan B at the moment !

[Gambit62 Administrator in reply to Lilnicki]

I didn't think I would inject but have found it a lot easier than I was expecting ... just sub-cutaneous. My concern was around experiences with anti-co-agulants after an operation to pin an ankle ... for some reason they told me to do it in the stomach which I found excruciatingly painful ... find the thigh much easier ... worse thing was my first attempt at breaking into a phial - cut myself quite badly but then realised that I was trying to break it wrong - there's a weak spot marked on the phial - so not something that I've repeated. Second downer was lid not being properly on the sharp box with result that the cats knocked it off the table yesterday and everything tumbled out ... sharps weren't the problem - it was all the glass from the phials ... but cleaned that up quite quickly - actually quite amazed by how mellow I've become - compared with what an anxious wreck I was a few months ago. injections work for the fatigue but I still find that the mood can come back within the same day so still using the nasal spray as well ... feels like I need 3mg per day to function at my best ... which is a big difference from 1mg every 2 months. Lots of me that really can't understand why the regime is so bad that it turns us into zombies - rather than fully functional members of society earning enough to more than cover the cost of B12 in terms of taxes.

It is, indeed, a very crazy world in which we live.

Keep plan B in mind. You may need to implement it as well as plan A

[Lilnicki in reply to Gambit62]

Is Dr Chandy someone who the general public can get an appointment with..... Could he be a plan C ?

[Gambit62 Administrator in reply to Lilnicki]

best thing to do is probably look at the b12d website

b12d.org/

Think some people have seen him - based in North of England.

There are some GPs who are sympathetic and clued up out there and I think education is starting ... saw in the PA newsletter that they are developing a set of posters to raise awareness and they also have an event on 25/10 in London but unfortunately it clashes with something else so I won't be able to go

CAN Mezzanine

49 - 51 East Road

London

N1 6AH on

Saturday 25th October

between 10am and 2pm.

There supposed to be organising other events round the country. Not sure if it is members only or not but you might find it useful to go if you can - chance to share with others in person

[Poppet11 in reply to Gambit62]

Very difficult to resist the urge to run around with a needle jabbing, isn't it?

B12 deficiency causes one of the reversible dementias. Only if they give them enough b12 of course. Which they don't.