What do you do when the medics are 90% of the problem?

[Gambit62]

Sorry but I just need to vent. Had a really bad meeting with GP this morning and getting to the point where I'm going to give up on the NHS. Walked out and apologised for wasting his time and thought to myself 'and I'm really sorry that you have wasted my time'. Wanted to talk about the B12 deficiency as I'm sure that is what has been making me struggle so much with moving over the last few years and particularly this year. Its very different from the depression - as hit me after my shot in February - when I thought I was okay but I when I went out for my run (more of a quicktime shuffle before the shot) but I could actually run and move limbs this time but all I wanted to do was cry and curl up in a little ball because how stressed I was about work had just hit me.

This morning he only wanted to talk about depression - when actually it was his refusual to talk about B12 that had left me feeling totally hopeless at that point - kept suggesting anti-depressants which I flatly refused - never found them particularly helpful in lifting the mood - just stop me caring about everything so stop caring about the fact that I'm miserable and just existing. I have found meditation quite useful in helping me to find little moments which I can think back on and may be feel that there might be something to balance out the pain. The other thing though is that there is evidence that SSRI's can interfere with B9 levels and as a result just make any B12 related depression worse though I didn't actually say that. Don't think he would have listened.

I just really get the impression that he does not have a clue when it comes to what B12 deficiency is - classic answer today 'can't be the B12 because you are getting shots' ... he was trying to be helpful - kept offering to do a B12 test on my bloods and I kept explaining to him that the NHS test wasn't going to be any help because it looks at total B12 rather than focusing on the levels of active form of B12 (one of the most complex vitamins as far as I can work out and not particularly well understood in terms of how it actually does what it does in terms of cell reproduction) but he just didn't get it. Scary that there are so many doctors like that out there. Just wish I had a GP with a bit of nous who would listen to me. I wish I had someone I could talk to about this bloody condition and help me fight against the system.

There are a couple of on-line petitions on B12 at the moment trying to raise the issue of how the condition is misunderstood by GPs and actually suffers can be treated extremely cruelly, just in case anyone feels like signing one.

change.org/petitions/ian-hu...

secure.avaaz.org/en/petitio...

And for the record I am a member of the PAS forum (Pernicious Anaemia Society) on health unlocked.

[Photogeek]

Hi Gambit that's very difficult if you don't feel that you can be heard by your Doctor.

Can you change Drs..? Or do you have to stay with thus one.

I'm not sure what to say but you seem to be going through a hard time lately,

And I think some Drs. Feel that if you do t want to take antidepressants, they probably

Will tend to write you off as a crank. You have your Mindfullness so try and do

That and think about changing your Dr. As you seem to be losing faith in him.

Hannah x

[Gambit62 in reply to Photogeek]

Thanks Hannah. Have decided to see if I can move to another practice in the town which is closer to home and has longer hours ... and use that as the reasons for trying. Ended up at the one I'm at because was the only place my husband could get into when I was married but have had various problems there over the year - including one Dr telling me there is no test for carpel tunnel (diagnosed by OT at work) when I had literature telling me there was. Not sure I really have much faith in any GPs - know it is going to be almost impossible to have knowledge of everything and even experts have problems picking up on things ... but I can't help being disappointed by how often they live down to my expectations.

Still quite upset but calming down slowly - blood pressure a bit all over the place but think that will probably get back to normal once I've calmed down properly. Just been for a run and good news is that playing around with the nasal spray of B12 does seem to be giving me more energy - lifting feet was a lot easier - and although there was one place where I tripped on some rough ground I managed to stop myself and keep my balance. Just have to keep persevering with the high dose and may be that will be a way of beating this (bit expensive but not horrendously so) that puts me in charge. Think I'm ready to go back to bed for a few hours though - cats all back in from their early morning revelries as well.

[Hidden in reply to Gambit62]

There's a fairly decent dose of B12 available on Amazon and it is fairly cheap. x

[Hidden]

Hi

I don't know what the shots are - are they iron?

I am wondering whether there is a specialist that you can be referred to who deals with levels within bloods - a haematologist perhaps? I don't know whether one can be referred to within the NHS but you have a right to ask to be referred to a specialist. Isn't B12 connected with thyroid deficiency? If so then there is a UK society and they probably have advice about how to get the detailed tests, there is so much online recently about B12 deficiency there must be info about how to get the detailed tests under the NHS?

My mum had pernicious anaemia and always swore by taking Metatone so it might be worth a try.

Suex

[Gambit62 in reply to Hidden]

Shots aren't iron as Pernicious Anaemia isn't necessarily an iron problem - though that can develop as a symptom. Unfortunately the name seems to get GPs thinking that you can't have Pernicious Anaemia unless you have a blood problem - hence I think people are moving more towards talking about B12 deficiency. B12 is one of the more complex vitamins. It can be administered medically through 4 different forms - all of which have different processes to go through before they get converted to the form of B12 that you actually need to maintain a healthy nervous system and ensure that cell reproduction is happening properly.

Sorry to hear that your mum had the condition - make sure that you keep an eye out for possible B12 problems yourself. There are a lot of potential psychological symptoms - which include depression and psychosis. The later was actually identified through a quite interesting accident where a doctor, trying to deal with a young patient who was resistent to taking drugs got her to agree to take vitamin B12 with the intention for substituting it for anti-psychotics once the habit was established (will leave the medical ethics of strategy out of it :)). Anyway, the doctor was really surprised when she actually got better just by taking the B12. Its been found to work exactly the same in other people so definitely wasn't a fluke, but it is something that the medics just don't seem to be aware of.

[Hidden in reply to Gambit62]

Thanks for info. I do take a B12 supplement already as at some point I recognised symptoms, and I am feeling a lot better although whether the two are related who knows as some other things have changed too.

[Gambit62 in reply to Hidden]

Yes, it's all a bit weird ... and not helped by the fact that a lot of B12 Deficient people have good days as well as bad days.

[mimii in reply to Gambit62]

Hi gambit can I ask how you find out if you have B12 deficiency it all sounds so confusing, as my daughter's had depression and psychosis would anti depressants and anti psychotics mask any of the symptoms or would they still be present ? She's not had any tests for this she's had some blood tests but not sure what for and her last visit to doctor's he didn't even mention the results shes trying to change Doctor's as he doesn't seem to have a clue and very unhelpful xx

[Gambit62 in reply to mimii]

Please note: I'm really not an expert - just have read up and researched what I can because of the shortage of co-herent information out there.

In terms of looking at whether B12 is really likely you might want to look at the PAS (pernicious anaemia society) website - they have a checklist of symptoms

pernicious-anaemia-society....

You might also find it useful to read one of the books they have published which explain what PA is and how people try to live with it

pernicious-anaemia-society....

This includes reference to the case I mention below in response to SecondHandRose.

You might also find the b12d website helpful

b12d.org/

Probably the best test for B12 deficiency is 'active B12' you can't get this on the NHS though I believe you can get it done privately eg at St Thomas in London.

The general test that is done is Serum B12 but this looks at total B12 in your system/blood and doesn't distinguish between forms of the protein that could potentially be used to support maintenance of nervous system etc and the form that actually does, so you can get a result coming back that indicates you are okay when actually you can be symptomatic. Also the level set as being the one to take action is actually very low and you can be symptomatic well above this level.

One thing you should definitely ask about is your daughter's folate/B9 levels. B9 and B12 are quite closely linked and reductions in B9 can negatively impact on the ability to effectively absorb and use B12. SSRI's can negatively impact on B9 levels.

I hope you do find a GP who listens. There are lots of conditions that have quite similar sets of symptoms including depression and psychosis. Often, because most are autoimmune diseases, people can actually be suffering from more than one so it is important that your GP is open to continuing to look at what is going on.

There is also a forum on Health Unlocked run by the PAS - number of people on there who have far more expertise than I do.

Wishing you find a GP who listens soon.

[mimii in reply to Gambit62]

Thanks for all the info gambit , just hope she gets a good doctor then we might be able to have some of these tests done xx

[Hidden]

I agree that medics are VERY variable and sometimes are half of the problem, especially when they don't listen to the patient or take account of individual experiences. I can only suggest you search around until you find a GP who does listen and understand you better than your current one. x

[Gambit62]

B12 It is NOT a steroid.

B12 is a vitamin that is essential for production of healthy cells in the body. Without it, or without the ability to absorb enough from your diet you will develop neurological and psychological problems, as well as cells being unable to reproduce properly resulting in blood disorders, cancer etc. The neurological problems will result in inability to move, blindness, deafness and death.

Whilst I am obviously managing to maintain enough B12 to prevent the neurological/psychological problems reaching catastrophic proportions they have still there and affecting my life ... it is only by taking enormous doses of B12 that I have a chance of replacing them - which is what the injections are though for many sufferers in the UK the frequency of injections under guidelines used in the UK is not enough to prevent the symptoms starting to recur well before they are allowed a replacement injection.

I am finding in the last few days having upped my usage of a nasal spray that I was using very cautiously at first, that I am seeing an improvement and symptoms seem to be disappearing. My bowel movements are becoming more normal, I am starting to be able to lift my legs a bit more, I don't feel so unsteady on my feet. I did a lot of checking before I started playing with the levels of B12 I am taking and there is very difficult to overdose on it as it is water-soluble so excess is excreted in the urine. High doses do seem to have been linked to cancer in some studies but then as the condition also can result in cancer that doesn't really seem to be a risk that isn't worth taking. Other symptoms include rashes - but most sufferers would consider that a minor price to pay compared to living like a zombie unable to think or move. In some cases people are allergic and can develop anaphalactic shock - but that is rare and if it was going to happen to me it would have happened already.

[BennyBoy79]

Hey gambit me again. Is there any type of b12 supplement I could take to help my situation? I've heard that sublingual b12 taken under the tongue may help and actually if taken in high doses could be better than shots because of the drop off in between injections.

[Gambit62 in reply to BennyBoy79]

See reply to your post:

Lots of forms - number of people use sub-lingual tabs. I find nasal spray does trick for me but is quite expensive as at the doses I'm using at the moment a spray lasts about 3 weeks but compared to being a zombie it's worth it!

detoxpeople.eu/index.php?l=...

Methylcobalamin tends to be recommended if you have a lot of neurological symptoms - tingling in hands and feet, balance problems - and I believe that you can get that as sublingual tabs.

Think you can also get it as skin patches.

if you find something try to check what form of cobalamin they are using - lots use cyanocobalamin which may not be the easiest format for you body to absorb.

Try to be honest with your GP and let him/her know what you are doing ... and how you feel afterwards ... particularly as supplementingl cobalamin will affect results of tests if they decide to look at those again ... but they may not be aware of that. Think I lost count of the number of times I repeated that there wasn't any point in doing a whole serum B12 test last time because my levels would be artificially high from the shots I was having. Think they recommend at least 3-6 months without any supplementation if you are going to be tested ...

[Hidden in reply to Gambit62]

Have you ever asked to be referred to a specialist - either one who deals with levels of different things in the blood, would that be an endocrinologist, or else a neurologist for the neurological symptoms? They tend to have more expert up to date knowledge than GPs who are usually a jack-of-al-trades and expert in none. x

[Hidden in reply to BennyBoy79]

That's what I am taking - sibliingual B12 once a day. x

[aye_may]

i was told by a medic that 1) you can ask your gp to put in writing why s/he refuses to do what you are asking for, 2) write to practice manager about the situation and then go futher. but also i was told that most likely it's not gonna go futher than giving written reply.

know someone who took a solicitor to gp appointment to make sure that she was listen to and got referrals she was not getting beforehand.

about changing gp, you never know what you can get and there is no 100% that you will get a better one.

good luck!

A.

[Hidden]

I've had some similar thoughts about my own health but have given up having anything but clear symptoms that can be proven by evidence understood by my GP. Now I research and do whatever I can to solve my health problems myself as I find the process of going through NHS referrals etc so frustrating and depressing. Very occasionally I do come across a medic who has the view that the patient knows his/her own body best and listens, but so many seem to take the attitude that I am a silly neurotic woman especially since I allowed myself to seek help with depression from within the NHS whereas before that it wasn't so bad. I can really sympathise with your frustration and anger. I am lucky that I can afford to buy things privately and do so, as a result I take supplements including B12 and a homeopathic remedy for my joint problems, luckily together they seem to have solved those problems for the moment. I do think finding a GP who listens to your own view of what is wrong would be a good move. I find GPs are superb at dealing with the things they know about and generally anxious about things they don't understand, presumably because it leaves them feeling helpless as they are too busy to research every issue and their skills have to be widely spread. Sue xxx

[Gambit62 in reply to Hidden]

Thanks Sue, good to know that things have resolved themselves a bit for you.

I don't think PA patients are alone in finding it difficult to get through to their GP. There are so many conditions out there that have depression as a symptom and I think the way that the 'rewards' system works means GPs just get as far as depression and don't bother to go any further. I also don't think it is helped by the way they rely on checklists which often don't mention other possibilities. Hey, Ho.

Trying to go back and get the original blood test that gave the diagnosis but the hospital is proving to be a bit of a challenge - charged me £25 admin fee to send me hard copy contents of my file but the blood test isn't in there and I'd actually asked some specific questions which the file just doesn't answer. Quite sad really.

Haven't managed to go any further with moving GP but have been dissatisfied with that surgery for many years and it isn't the most convenient one for me to go to, though there is one nurse there who seems to be quite good with B12 - came to the conclusion that I'm going to avoid the GP and try to treat myself as much as I can (even if I am breaking the law on some elements as phials of B12 - which I do have) are prescription only in the UK but sometimes the law can be an ass as well. It's only because they are administered by injection that they are classed that way and there is a campaign to try and get that anomaly resolved but probably not enough momentum to do anything about it. Like you I'm fortunate enough to have resources to research things and source materials for myself but really don't think that that is right and the NHS is certainly failing a good group of people ... and the country as a whole given that for most the condition makes working at best difficult and if not impossible in the things they are really most suited to.

sometimes you just want to scream because of the stupidity of it all.

Have actually calmed down a lot since this post - which was about 2 months ago.

Guess it doesn't help that depression and anxiety make it more difficult to remain in control emotional and GPs often just want the rational and can't handle anything else. Can't say I really blame them - expected to know too much and not given the training that gives them the confidence to say when they don't know ... when systems go wrong they really don't do it by halves!