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Pernicious Anaemia Society
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Hopping mad!

Needed somewhere to blow off steam. I do not believe my profession! I've just been to my GP who bviously doesn't believe I am B12 deficient but is just going through the motions, at my instigation, to appease me despite symptoms.

The only hope that patients will ever get the health care they need for this condition is serious litigation to scare the life out of the medics and the NHS. I don't wish anyone to suffer serious consequences, but many have very sadly already done, so and the case should be made loud and clear in a court of law.

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Sadly welcome to the powerless world of patients who are seriously neglected by the so-called doctors!! Am amazed you have only just discovered what has been happening for so long .. the stubborn arrogance and unwillingness to change as well as serious lack of knowledge that patients have to put up with.

A friend who came with me at an appointment was shocked not only by the large number of patients waiting in the surgery but more so by the away they looked: "They look so ill ... can't imagine they get any treatment " were her exact words.

GPs are not really concerned about being a good doctor in helping patients getting better. They do a job sitting at a desk pressing keys on keyboard just like a civil servant ... and their main concern is saving money for their surgery above anything else. The less you prescribe and refer a patient the more they can pocket for their surgery...

I have read so many posts over the past few months whereby people were questioning what exactly they were taught at medical school... indeed.

Sorry to write in such a negative manner but like you and too many others I am frustrated and feel so ignored by doctors who are hardly doing their job!

As for patients taking doctors to court... expensive and lengthy when they are more than likely going to lose the case as doctors are so well protected.... plus when feeling so ill and exhausted this is not really feasible.

So glad that you as a GP have the honesty to expose doctors for what they are in not doing what they are expected to do. Do you see any way forward in making such a pattern of behaviour change for the better?

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I do see a definite way forward in funding a case (through contributions to PAS or other organisation) that has an excellent chance of success or alternatively seeking out a lawyer who is motivated to act pro bono.

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GPs are in it for what they can get [money] the less they can do the better for them. I say put them in line with all other National Health workers and expect them to open the surgery's door seven days a week, and begin to offer a service to their patients.

yes I know there will some out there who say they are so hard done by but try living on a minimum wage and being ripped off by everyone .

Replies welcome

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I understand your frustration but we must be careful not to generalise. There are good, well trained doctors out there, sometimes they are just a little hard to find.

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The trouble is that many B12 symptoms have commonly been attributed to neuroticism, particularly in women patients, and they can be difficult to assess and authenticate. It is a very easy response for GPs to dismiss those symptoms without investigating at all.

If the patient is assertive enough to oersuade the GP to take it seriously and the results are positive for B12 deficiency I think they then find it difficult to accept that they were wrong. When they then persist in offering inadequate treatment and the patient continues to be assertive they become even more defensive and obstinate with regard to the situation.

If only they could step down from the pedestal and admit that they got it wrong and are not well enough informed they could be guided by the patient in a truly therapeutic partnership. Sadly if they're not prepare to relinquish their God complex both sides end up digging their heals in. Impasse! Impossible!

We all know we have to encourage patients to take personal responsibility for all aspects of their health, but some doctors resent the loss of power that this inevitably creates.

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I was very lucky with my diagnosis in that I didn't need to convince the doctor of my symptoms. At the time I was naive and had no inkling that PA could be a potential diagnosis for severe parasthesia, stomatitis and glositis in a 28 year old. However, the young NHS general consultant I was referred to was very thorough. After many blood tests and neurological assessments, he told me of his suspicions and organised a bone marrow aspirate and Schillings test. I was diagnosed with PA, folate and zinc deficiencies. He even told me that I would be diagnosed hypothyroid in the future. I was, 25 years later!

He is obviously either retired or dead now however, I am sure there must be others like him out there... somewhere.

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<The bee in my bonnet in the field of tunnel vision to mix my metaphors, is the one symptom/problem per 10 minute GP consultation effectively inviting the patient to pre-judge what is relevant and what is not or risk much clock watching and eyes glazing over as the 10 minute deadline draws near. How any illness which presents with a number of symptoms ever get diagnosed is beyond me... I have now managed to clock up Parkinson's, B12 deficiency, polymyalgia and underactive thyroid all of which have required the help of Mr.Google for information not forthcoming from the medics who sometimes lack quite basic knowledge.

Having stopped my B12 injections of four years standing because I had foolishly drawn the GP's attention to the high level of B12in my blood, the GP responded to my request for discussion of my b12status (big mistake to inadvertently use a medical expression) with a lament about people going on the internet and expecting al sorts of monitoring not possible wth the\NHS resources and expecting him o attempt explanations condensing 6 years of training . I was quite prepared to wait until the levels started on their way down towards the 130 odd they had been 4 years ago but was intent on having my b12 monitored and documented and we agreed upon once year (!) . To humour me he gave me a form for intrinsic factor test clearly marked that it was the patient who was requesting the test although I had said quite the opposite as I tknow they are they are not reliable.. Surprise surprise it comes back that I lack intrinsic factor which he then proceed very slowly to carefully explain to me without the slightest air of having been barking up the wrong tree although I thought I detected a bit of rationalizing going on of t he patient wrong/dr. right variety as he reinstated the B 112 injections

I was so shocked when I saw on the Internet self-help groups how so any people are driven to self-medicate to avoid serious irreversible neural damage I toyed with the idea of getting up a 38 degrees petition . However,at 77 it takes m e all my time to get the show on the road Do hope you can highlight this truly shocking state of affairs.

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Hi,

I share your disbelief. I had some very unpleasant experiences trying to get B12 deficiency recognised including being shouted at. Think it's possible that I have mild PTSD symptoms as a result. The process, not far off 20 years of it , haunts me and came close to making me want to give up.

It wasn't the lack of a B12 deficiency diagnosis, despite low B12 at one point and numerous typical symptoms, that upset me so much.... it was that at one point no-one was listening to me or looking at the info I found or even seemed to want to help me.

In the end I was forced as an absolute last resort to self treat and guess what?... many symptoms improved and some disappeared.

"I've just been to my GP who bviously doesn't believe I am B12 deficient "

My personal view is that writing letters to GP about b12 is better than discussion sometimes

because it

a) removes confrontation

b) is a permanent record of issues raised eg filed in medical record

c) gives patient time to express themselves clearly and GP time to digest info before next appt

The downside is that writing letters may irritate some GPs.

b12deficiency.info/b12-writ...

I learned a hard life lesson and that was sometimes the only person who is going to help is yourself.

I also think that the attitude of some medics I had contact with, affected how those close to me viewed my health problems.

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Totally sympathise with you. We have had and still have similar experiences and it is not just two of us. GPs want to shut patients up... rule over them. They have been used to doing so for far too long and are reluctant to give up that feeling of power over people.

Sadly they must be taught they are "superior beings" and they believe that delusion. This must stop!

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To be fair to GPs I think there are lovely ones out there who really care .

I am happy with my current GPs but still affected by my past experiences .

It's also not just some GPs who are unhelpful.

I had contact with numerous consultants , some of whom were abrupt or rude and some who although pleasant to talk to, appeared to be less well-informed about B12 deficiency than I expected.

I think the only thing that will make some GPs change their attitude to B12 deficiency is developing it themselves.

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Probably true. Don't take it personally. I am an intelligent and fairly well informed doctor and was told today that you can find all sorts of rubbish on the internet! I can only shudder to think how a less well informed patient would be treated. I am incandescent with rage!

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was told today that you can find all sorts of rubbish on the internet

And that is, unfortunately, true. Every GP gets loads of patients who have consulted 'Dr Google' and are convinced that wombat droppings can cure their maladies - and can they get them in the NHS?

On this forum you can find people suggesting that their B12 deficiency can be fixed by eating magic molasses or hanging coloured quartz around their neck.

So I can understand why they might dismiss anything that includes the words 'on the internet'.

When I wanted to persuade my doctor to listen I started by handing him a paper from the BMJ - something he's going to recognise as reliable.

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That should never be necessary and I resent that as a doctor myself I am that gullible!

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As a doctor which would you be more likely to read and believe; a paper from the BMJ or a printout from mthfr.net which says that cancer is caused by a mutation in the MTHFR gene?

If it were me I would think that the person asking me to read the latter was the one who thought I was gullible.

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Frankly if it had a skull and crossbones stamped on it nothing would change.

I have not produced any documentation at all for my GP. That really is not my job. In any case since he was not aware of the relevance of MMA or homocysteine I doubt any scientific papers would generate much interest understanding anyway!

As a doctor myself, if I had been treating another doctor I would have made absolutely sure I had read up as much as possible rather than show my ignorance. I certainly would not have been so rude and patronising to someone with equal or superior knowledge and even more experience.

I can only imagine what happens to patients who are not articulate and well informed!

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It's best only to refer your GP to literature with "BMJ" written across the top or other reputable medical evidence. Which is what most of us do - to no avail !

You've got a thing about wombat droppings haven't you fbirder ?

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Are you saying that the well, known healing powers of wombat droppings is bogus?

Why else would they be cubed?

Give me half an hour and I'll put together a website to convince you - pictures of people in white coats and all.

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But frankly we're all bright enough to recognise it would be hogwash!

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Really?

There's enough people convinced by websites that molasses or crystals can heal their B12 deficiency.

Put enough pictures of people in white coats on your site and somebody will believe it.

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Don't believe it. The people on this site are generally far too bright - with the odd exception of course!

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A GP told me initially that Brewer's Yeast and Positive Reframing would cure me - maybe they had visited your Wombat Woo Website. Oh no - I forgot - no time to read.

*To be fair to said GP - they later allowed the injections.

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No , wombat droppings are a good source of vitamin B12 .

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wedgewood I wonder if you can get B12 from reptiles (bet fbirder knows) in which case the snake oil sellers may have been onto something after all !

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Greetings beginner 1! I' ve researched this on the internet , but couldn't get an answer! But I wouldn't be surprised if there was B12 in their droppings just as there is in wombat's . Yes, that would account for the efficacy of snake oil . 🐍!

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I did that too and the consultant wrote to my GP that I was over obsessed with my health. You can't win whatever you do however, I persevered until I found an endocrinologist I can work with. She goes along with my requests to check particular bloods: I even bought her a book as I have multiple autoimmune disorders, and now my B12 is at a therpeutic level which she clearly states to other doctors that my treatment regime should not be altered without first consulting her.

Perhaps we could invite doctors with a real interest in PA and patients to contact the forum so that we can collect a list of Doctor's interested in our care?

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Giving your doctor a relevant book is a good idea if you think that they will read it. I gave my GP a copy of Martyn Hooper's book, which he has passed around the clinic.

Unfortunately HU rules forbid identification of individual doctors

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I very much doubt mine would read it!

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Mauschen

An haematoligist (head of department) I saw privately a few weeks ago sent me a rather lovely letter BUT then sent a report to my GP (had asked him to send me a copy of report... which he "forgot" to do)...

Unknown to him I now have a copy of his "stitch up" letter (what an arrogant hypoctrite) in which he was stating he was rather surprised I was having B12 injections and that he had encouraged me to reduce my B12 injections, and he was slightly puzzled as to how I was getting the injections... explaining that reducing B12 would be a good thing.... (What???) he carried on saying "As you might imagine Mrs X is very articulate and explained her desire to run her blood levels at an optimal range".. He is so unaware that patients who have hypothyroidism (no thyroid) and take PPIs are at a higher risk of B12 deficiency/PA, (and YET ponctificates), need to have their vitamins/nutrients levels at optimal levels for the T4 to be converted to T3.... and he's an haematoligist!!! God help us.

The fact he is in a very senior position as an haematologist is most concerning.... He also told me during the consultation his daughter was B12 deficient and found it very difficult to cope with the 3 monthly maintenance dose!!! He also told me his wife was hypothyroid and agreed most endos knew very little about thyroid problems and that he understood how I felt! What a manipulative liar! Yet he is receiving a fat salary for being useless, disparaging and power hungry as well as a manipulating sad character. What an utter waste of NHS money... and he's not the only one....

Finding me "very articulate" put a spanner in the works as he realised he simply could not placate me and shut me up to my face. Goodness articulate and intelligent patients who do research must be the medical so-called professionals worst nightmare!

These people still live in their ivory tower and are doing all they can to remain there... We patients need to show them this is an outdated model, belonging to the Victorian era. Meanwhile we have to suffer...

Had to edit my post because I forgot to say this "SENIOR head of department haematologist has still not explained why I have developed microcytosis!!! Yes, that speaks for itself!.... OMG

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I love your rant ... preciousπŸ˜‚

Yes, many people on the forum; myself included, will be able to relate to your situation . The future however, looks bleak for all of us if the medical profession don't change their attitude.

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Indeed the attitude of medics is most concerning. It feels like they are only in the job for the status and th money + power over the plebs!

Ranting comes from utter despair and great concern and worry in not finding a way forward with increasing debilitating health problems, and the inability to make the most of my "Autumn years"...

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JGBH, I can empathise.

My greatest concern is Altzheimer disease because I am already very forgetful.

The medics don't seem to realise that we are fighting to prevent further debilitation. We don't really want to litigate against anyone, we want to be heard, listened to and helped.

What would litigation do, give us a πŸ† trophy? What can financial compensation bring for those of us that will be pushing up the daisies before a settlement has been reached ...nothing!

We must educate ourselves and each other. The mathematical solution put forward by ...oh I forget ...is not far of the mark. Doctors like Dewbuc and others with a personal/professional interest in PA should engage with us. They are more aware of the reality related to healthcare system and political issues which might be stumbling blocks to advancement of care. We need to continue to talk, to share our experiences because these are not something you will find in the medical books, these are our realities, and are a priceless educational tool.

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fbirder

Of course there are "all sorts of rubbish" parading as "scientific research"... But some of us know when to ignore such nonsense and only rely on research from reliable sources, although dare I say it a lot of so-called research is rather biased, driven and paid for by greedy and unethical pharmaceutical compagnies and should be dismissed too.

Like you, I handed many reliable papers to my GP and yet she did not take it on board! Not keen to develop an open mind and change the bad habit of many decades.... They do not like to be rightly challenged by patients who are tired of being fobbed off and shown little respect in the process. This is rather disturbing.

As a patient I would rather not have to do "research" in order to find answers to my on-going health problems, I would rather not having to do the doctor's job.... but there is no option except acccepting their inability to find causes and accurate treatments, something I, like many other patients, am not prepared to do. It is pretty appaling patients have to fight for medical help. Indeed is there was consistent good medical practice forum like this one would certainly not exist.

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Hi fbirder I did give my GP a copy of the BMJ and showed him how the Gloucestershire Guidelines differed - his reply "We don't do that here." and didn't.

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I agree but the method of selection for medical school has to change. Just like politicians, if you recruit mainly from the ranks of the privileged very few will understand the problems and needs of mere mortals!

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That is quite right. However it seems to be a problem that is created by the fact that becoming a doctor requires long and arduous studies which seems then to place doctors automatically into a bracket of "superior beings" .. I hope you understand what I mean by that, not wishing to be derogatory to doctors, which by extension "gives them the right" to make life and death decisions over other people's lives much too quickly. I say that because one of my undergraduate grandson's friends is training to become a GP and although he doesn't come from a privileged background and is of a caring nature he nevertheless appears to be developing that kind of attitude that patients need to understand they "can't be helped that much and need to accept it" .... also that GPS can be sued so easily (we know that's not true) so can't afford to make a mistake!

So you see, change needs to start by a huge shake up of the medical establishment at source. Can't see that happening any time soon.

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Agree with all you've said!

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"patients need to understand they can't be helped that much and need to accept it"

One of the most depressing and disturbing things is realising that you could have been helped, should have been helped, and you weren't. Or aren't. Especially when you have struggled unnecessarily for many, many years. Research on the 'evil internet' has made us realise we are not always just suffering from 'stress' or 'a virus' and that there ARE tests and treatments for all sorts of things. Some people get them, and some people don't. We also know there are terrible side effects from drugs we would once have swallowed without a thought - and that there are alternatives to those drugs, some of which are withheld for cost reasons.

I used to believe I was on some sort of 'healing journey' and that there was some reason for this which I didn't understand. It was the only way I could come to terms with being in as much pain as I was for as long as I was. But now I am aware this was a 'journey' I didn't need to take - if I had had doctors who cared enough to get me a proper diagnosis thirty years ago.

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Totally understand how you feel. You should not have had to endure such pain and neglect for so long... Medical help is indeed a lottery. If one is lucky enough to have an helpful caring GP, and living in the correct post code, one is more likely to get a better service - although it is not always the case - but many patients are not so lucky.

I do like your expression "research on 'the evil internet' has made us realise we are not....." GPs and consultants do NOT like it a bit. It shakes them up when patients challenge them about diagnosis and treatment... It makes them feel out of control, something they take for granted as a god sent gift because they are "doctors". Many a consultant has told me "there is such bad resaearch on the internet!".... I always point out i do NOT look at such pathetic useless so-called research but always try to understand by reading accurate scientific research papers. they are unhappy at the thought that patients are beginning to understand what is happening, and most often not happening. Rather unsettling for them who often write in a derogatory and condescending way about patients.... Thank goodness that we are now entitled to have copies of tests results and letters.

Do hope you are feeling in less pain now.

With best wishes.

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Do they still have a lottery for places at medical school?I was shocked in the 60,s I think that my nephew stayed an additional year at Marlborough and still did not get a draw.Incidentally my brother father in law my spouse brother in law and sundry other relatives all high ranking physicians so I myself Srn rscn and midwife have been handled so to speak with velvet gloves. The stories on here are downright appalling and I,m not sure the restless leg site isn't,t worse.to Dewbuc

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Lucky you. The kid gloves are definitely not on around here but I still have my iron fist!

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You are very lucky to get the kid glove treatment. I am also a healthcare professional but get treated like I have a psychiatric illness because I ask questions and challenge answers.

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mauschen

No doubt you've been offered their miracle cure all: antidepressants! What con merchants they are....

Like me you must be "very articulate"... what a pain, you cannot be shut up and bullied and told it's all in your head.... losers!

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Yes JGBH, I have been offered antidepressants and the doctor was not amused when I asked on what basis the depression diagnosis was based.

Apparently, PA and hypothyroidism is all that's needed to qualify you to line the pockets of the pharmaceutical industry and put you on antidepressants for life.

A friend of mine who was suffering from depression said that the doctor scored her high because she was wearing dark clothing and her hair was a mess. She always wears dark clothing because she is a bit heavy and in Scotland it's hard to tame your hair in the wind.

While I accept that in my friend's case, her personal appearance might be relevant, I am now very careful about what I wear when I go to the doctor, although I stay away from the bright pinks in winter because that might backfireπŸ˜€

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Mauschen,

GPs get many bonus points for their surgery when giving antidepressants.. not that many for B12 injections...

Agree you should stay well away from bright pinks in the scottish winter weather... too much like a beacon or shall I say a red flag to the bull.... your doctor would need to "medicate" you for sure!

What do you think about the haematologist I saw? Incredible but sadly true...

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I think there is still an unfair correlation between B12 injections and yuppie energy boosters. Some doctors don't seem to realise that with PA we are actually very ill and in need of this life saving medication.

Surely, someone must have mentioned in medical school that PA rarely comes alone, usually there are other deficiencies and autoimmune conditions.

A haematologist one might think, would be well placed to understand the need for a holistic approach... not in your case it seems.

I have never been referred to a haematologist. Once diagnosed by a general medical consultant, and loading doses given, I was commenced on monthly injections for life and left to get on with it.

What concerns me about your experience and my own is the deceit . Saying one thing to our faces and something else behind our backs ... indeed, is this ethical?

I wonder if his daughter and wife truly suffered with these illnesses, if not, he really was playing with your mind.

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You are quite right about correlation between B12 injections and yuppie energy booster... like nitrous oxide as a recreational drug!!

The concern I have is that I've realised over the past 3 years the medics, even at consultant levels, are rather limited in their knowledge and understanding of various diseases. They seem unable and unwilling to think beyond the box. They appear to be unable to make a diagnosis by looking and listening to the patients... the symptoms are totally ignored and dismissed... They are used to box ticking and looking a stupid tests ranges... and always proclaim "all normal"... when in fact when I decided to ask for a copy of my results (denied first "they belong to the NHS!" my gp said in a panic... put her right then) I realised many were identified by lab as "above and below range" and that for quite a few years. Consequently I became very ill and have not recovered... still many problems.

That haematologist was obviously not used to having a patient who was informed and holding a conversation at his level. Furthermore I quickly destroyed any fobbing off myth he was trying to make me believe by giving him facts... He was therefore unable to "control me"... the little woman whohad done research: "There is so much bad research" said he while googling stupid research... - told him that was not MY kind of research, therefore once more he felt he was not managing to shut me up. As for either his wife and daughter having health issues.. who knows.. I doubted it because he seems to be out of his depth.... Having said that many consultants are out of their depth. Patients are now finding the truth about their very limited knowledge and ability... they are becoming aware of that realisation and they don't like it a bit. They are just power freaks.. and no one in the past challenged them s we do now.

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You are so right but what to do? Litigation as Dewbuc's opening post suggests, does not seem to be the right approach for me. However, I agree that there is a marked deficit in knowledge even among the high ranking "experts". I suppose one can on,y hope that some of them stray onto this forum and realise the knowledge we have and the knowkedge we share.

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It is reflected glory due to the respect for my spouses abilities as e teacher ,healer and intellectual.

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Mauschen omitted your name to my post so it may appear somewhat out of kilter.

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Dewbuc - I once lived in Birmingham UK at a time when 5A* subjects of the right sort had you fast tracked into Medical School. A friend of mine had a senior position in the Labs at the QE - and when working with said Docs on Clinic Days - found that these brilliantly academically qualified bods had absolutely no wish to deal with the public. My friend was always the one that had to give the bad news and deal with the patients. Of course this was pure observation/experience at that time - and hopefully things have changed.

Perhaps having a couple of years practical experience somewhere appropriate for Medics before they start their training would give them those life lessons that are key.

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For me the ability to establish rapport with the patient and to understand and empathise with their situation is absolutely essential. Medical students here are selected largely on academic achievement and what is documented on their application form. Privately educated rich children get much more support in both respects, but I suspect are much less able to deal with "Joe public" than those with a more ordinary background and more modest A level results.

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I feel for you. I went into medicine to help people, not to make money. Sadly many youngsters who are so motivated are not getting into medical school because the private schools, crammers etc are getting the thick rich kids and foreign students in instead. We need more working class youngsters with real experience of life getting in who will adopt a sensitivity to the needs of normal patients.

Like you I will depend on myself to ensure adequate treatment whatever it takes but I cannot ignore the gross arrogance and ignorance of my profession.

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I am really appreciative of your incredible honesty and the courage you show in not turning a blind eye to comments made by rather frustrated patients who are often at their wit's end... so despairing that some even think about taking their own life, feeling abandoned, dismissed, alone in a pointless fight. So I truly thank you for speaking with such honesty.

You have made, yet again, valuable comments about the "selection" or rather lack of it for students going into medical schools. "True doctors" going into the profession for altruistic reasons alone are rare nowadays, and it shows.. They are driven by status and money.... as you have so well insinuated in your post above.

Yes, more working class youngsters should be helped to get into medical schools. Many of them are more intelligent than "rich thick kids" who are sent to expensive private schools and crammers, as you did make the point. They certainly would understand people much better and one would hope would really care and be proud of being a doctor doing the very best they can.

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Thanks. I genuinely believe that to be the case.

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I think empathy comes in all different shapes, sizes, sexes and backgrounds and unfortunately is not easily taught. I have had very good and bad doctoring by all.

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Good points, however although there are some lovely GPs who will really listen and give time, they are still reluctant to learn... I truly wish there would be a possibility for change in that respect. It is so hard and unpleasant to have to "fight" for help, for treatment. That simply should not be the case.

Indeed there would be no or little need then for such useful forum.

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Sadly I wish what you are saying about GPs was true, but I very much doubt it is the case.

I suspect anyone who has serious neurological problems and can demonstrate that they were not properly tested or treated would have an excellent legal case. If that is not so then this forum is essentially wasting everyone's time and energy and tantamount to saying B12 and it's mismanagement is a neurotics dream!

Every patient should ensure their concerns are properly recorded in their medical records and that contemporaneous notes of their investigations and treatment are adequately recorded along with any objections raised by the patient. In the event of serious consequences an excellent legal case could be made.

Disregarding this condition is no less severe than disregarding severe crushing chest pain radiating into the arm and neck! Of course heart attacks are perceived (incorrectly) as being a male problem so of course, like prostate cancer, are taken much more seriously!

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Im not sure why you believe that a difficulty in taking successful legal action against a medic indicates that this forum is a waste of time.

This forum exists, I believe, to pass on useful information to others. And to suggest means by which they might be able to pass that information on to their doctors.

Sleepybunny's post on this thread is a great example. Useful information and the suggestion that this information is best passed on to the doctor in a letter.

That sounds much more likely to bear success than threats of legal action.

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I absolutely agree with you. This is an invaluable forum with masses of fantastic advice. However, if you feel there is no legal case I believe this invalidates the very real issues suffered by so many of your contributors. If this does no stand up to legal scrutiny then perhaps we should dismiss it all, which i don't happen to agree with.

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fbirder, I agree that letters written to the doctor do eventually help. However I disagree that doctors take it all on board intelligently and accept their shortcomings by trying to then educate themselves BUT they do not.... My GP had to agree for me to have B12 injections after a year of fight... BUT she then wrote to a consultant that I demanded B12! injections although I do not have B12 deficiency even though I had/have neurological symptoms, etc... Furthermore she did not even suggest I shoulld be referred to a neurologist to complete the diagnosis.... still waiting...

So, you see, with due respect they are as unwilling to learn as they are to change. This is unacceptable and leads to much distress and unnecessary pain, anxiety, breaking families up, driving people to deep depression and premature death through failure of correct diagnosis and accurate treatment.

Doctors should be taken to court when they are unwilling/unable to do their job. If they cannot cope as a doctor then perhaps then they should consider applying for a less well paid job, carrying less status and certainly no responsibility for the wellbeing of patients. Failure to do one's job well in any other fields would mean sacking... the same should apply for doctors. It does not... or so very rarely.

Many patients have to resort to seeing consultants privately in order to get things moving, just a little.... That is unacceptable because it devises people. Those who can afford private help and those who have to put up with a useles situation. Not right, am afraid.

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Wholeheartedly agree.

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If it wasn't for the advice, information & support of this forum, I would still be very poorly & feeling isolated. It is the isolation of feeling no one is listening to you that brings the despair, even more than the symptoms themselves. This community redresses the balance & helps to bring change. Each GP educated by their patients through the suggestions on this site is a step towards tipping the balance, albeit that this shouldn't be necessary & however frustratingly slow it may be!

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Of course I agree that there are some lovely GPs. However, we need not only lovely GPs who have compassion but also GPs who will act and do their very best for the patients, not trying to fob them off there is nothing wrong with them, when we know only too well there is something wrong with our bodies.

Agree also with your comment regarding unpleasanr, abrupt and less informed consultants, not just regarding B12 deficiency but also thyroid dysfunctions (that is a huge problem, believe me...) and probably other health issues.

It is only when they become seriously ill themselves they will understand how vulnerable one becomes when ill... but they still do not see the complete picture somehow. Have had such an experience ecently with a consultant who had become quite ill (fully recovered now) who told me he felt "quite humbled" by his period of illness and saw the situation from an another angle now, but then he totally did not understand that one can feel very anxious about coming back home, post major surgery (complete knee replacement) living alone... "it is best for patients to be independent as soon as possible... etc." Of course it is but it needs to be safe first of all for patients to be left on their own. So you see, he only "saw" one side of the patient's story... He was lucky to have someone coming home in the evenings once he was discharged. It's always the same... One needs to experience things to really understand.

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That should not be the case, but sadly you are absolutely correct. I had a superb endocrinologist diagnose and treat my thyroid problem, who had himself been very ill. It certainly concentrated his mind in an extremely effective and knowledgeable manner.

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Thank you for such honesty. It would be so good for medical professionals to be made aware of the vulnerability of some patients who are very ill and dependent on decent and effective doctors as an important part of their training... but I am dreaming.

Hoping you will get the treatment you and your son need.

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You are so kind.

If I may digress as a young GP I was asked to see an elderly patient by her daughter. A visit by my male partners was definitely not acceptable. The daughter did not know what the problem was, but she knew instinctively that something was wrong.

I called very casually to see the patient and she Invited me in and offered me a cup of tea. We chatted for a while. I then asked her how she was and she looked at me very carefully, to check me out, before opening her blouse. She had a fungating breast cancer the size of a grapefruit!

I remarked that it couldn't have occurred overnight. How long had she had it and why had she not sought our help.

She told me that a year before she had a small lump in her breast and one of my male partners had told her never to waste his time with anything so trivial again!

As the lump got bigger she was afraid to go back to the GPs. Once it ulcerated through the skin she was too terrified to ask for help.

No treatment other than daily dressings was possible at that time, and I doubt much has changed since.

That was a terrible experience for her, and for me, but taught me never ever to ignore the fears of patients.

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As a visitor from the Thyroid UK forum, I find that very interesting. Sadly, also all too rare.

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Dewbuc - not sure if you have had the time to peruse the Thyroid UK forum here on HU. Over 63.000 people struggling on a daily basis - to have their symptoms taken seriously. Only the TSH is tested and if in range then one is declared * Normal * .... As you know the FT4 and FT3 along with anti-bodies also need to be tested to rule out Hashimotos. After years of ill health I was diagnosed late in life - but not too late - with Hashimotos - here in Crete back in 2005.

And so people continue to lose their lives due to a mis-understanding of the Thyroid blood tests - and the appallingly poor testing. Most Endos have an interest in Diabetes - not understanding that often diabetes can be an extreme condition of an un/undertreated thyroid.

My youngest daughter was tested here in Crete some 10 years ago. TFT's were in range - her instantly arranged Scan revealed a suspicious node. I was with her when the Radiographer mentioned it needed further investigation. Back with my local GP here and she confirmed the seriousness of the situation. We are able to have the scans and the report at the appointment so immediately I was able to return to the GP with the results for further comment.

My daughter returned to the UK and twice her GP declared her normal having done HIS tests - refusing to look at the VERY excellently presented results and scan from Crete. With further prodding from this end she eventually went privately - and reluctantly her GP wrote the letter. Her FNB indicated thyroid cancer. Her thyroid was removed and RAI followed.

Several months had passed between the diagnosis here and in the UK. Chondroid Tumours followed in her leg and at this moment in time she is well and persuing an exciting and demanding career. I am able to keep her supplied with T3 and B12 injections and her almost bi-polar diagnosis has faded away. Yet another mis-diagnosis. B12 is OTC and 3 phials and 3 syringes is under 5 euro :-)

The very same GP thinks that my grandsons below level Ferritin is just fine and that the supps I purchased for him two years ago were also fine. No attempt to find out why he is so low.

I apologise for hi-jacking your thread and for going off-topic :-)

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I totally understand your frustration. I'm having difficulty fighting the NHS intransigence with regard to B12 at the moment but will definitely be checking the thyroid forum once I have got my head round the B12 issues.

I hope you daughter is doing well now and is not too disillusioned.

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This story is shocking! You are very knowledgeable and fit to pursue a diagnosis on behalf of your family, I wonder how many people with no support find themselves in a similar situation ... what happens to them ...

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That is the tragedy of this situation. I've found it hard enough and for many people it must be impossible!

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One of the reasons mauschen I spend time on the Thyroid UK forum. So many people are poorly and not being helped adequately due to lack of understanding/knowledge. Relying on one test instead of the required ones - then being treated for many other conditions without seeking the root cause. It is heartbreaking.

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I wholeheartedly agree Marz. However, with the NHS in a mud slide, do you envisage improvement?

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We can only dream ... I live in Crete and take the good with the bad. It is an easier system to navigate as long as you know what you are looking for :-)

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You are most welcome.

I thank you again for such openness of mind and clarity of speech having the courage to be so honest in recognising the fact that so many patients are left to die prematurely often because of lack of concern and all too often a kind of "domineering " by some doctors over vulnerable and anxious patients who then feel there is no point in pursuing the matter further, the o so important doctor having stated clearly and often loudly their "God time " had been wasted by a thoughtless malingering patient.

I have lost a young friend to breast cancer a few years ago. She was in her late 30s early 40s, with 2 young children. She was educated (graduate) although that should be of no importance- everybody deserves respect- but of a shy nature. She went several times to consult a GP (a man) and was told there was nothing wrong and that she needed to stop being neurotic!! Don't they like saying such demeaning things, especially to women, it must make them feel even more powerful and o so important! Sadly within a year of her last consultation she had to have mastectomy plus chemo and then died ... leaving 2 devastated children and a husband. Unfortunately this is not a rare case.

As a young caring GP the experience you related did obviously influence the way you saw and tried to help patients.

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I felt so sad reading your post. I am so sorry that you lost your friend and that a family lost a wife and that little children lost their mother. Some things cannot be cured or treated easily which is why it is so shameful that an easily diagnosed condition and readily available and inexpensive treatmem is not fully acknowledged and available.

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Thank you for caring. It all comes down to patients being listened to and respected and not just assuming that symptoms can be dismissed. Had my friend been referred for scans etc. she might be alive today

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I haven't personally had that many GP's, only changed when they have retired or left the surgery. All were extremely pleasant but it made no real difference to the way they dealt with my symptoms/concerns. In 2003 I went to GP with various worries, fatigue, irritability, constipation etc etc - just didn't feel like myself - no tests done just told probably post menopausal blues. Had a BUPA healthcheck shortly after and found to have UAT, went back to GP with results, NHS test done to confirm and prescribed Levo. Now this was my favourite, pleasant, concerned GP of many years - but why did I have to do his job for him.

Fast forward to 2011, sudden downturn in health feeling absolutely awful, tingling legs etc - the whole 9 yards and TSH had a hissy fit, levo adjusted but made no difference. To cut a long story short had a private full blood test and my MCV was over the top of the range, B12 was low but in range, folate was low but in range and TSH high. My doctor had retired and now with a different very nice GP who said MCV was irrelevant, all my symptoms were due to thyroid. I spent another 2 years adjusting levo while my neurological symptoms worsened, 4 toes had become totally numb, had speech problems, balance problems and extreme fatigue. In early 2014 (by which time I had a new GP - other one had left) - he did a FBC which came back with MCV just under top of the range (although the NHS range had been increased upwards) so again it was ignored as being normal. Sent to a neurologist (professor) who was the rudest person I have ever encountered, sent for an electrical test (can't remember what it was called) which thankfully ruled out more serious causes. BUT how is it that a neurologist wouldn't know that my symptoms could be caused by B12 deficiency - neither the GP nor the prof. ordered any further tests to rule this out (or in) and wait for it...............prof thought I could do with some antidepressants!!!!!

I think that the medical profession view woman patients much differently that their male counterparts (no offence intended here to the males among us) but antidepressants for me was the last straw - I certainly was not suffering from a deficiency in antidepressants. I have never been back to the surgery since and have no intention of doing so - I have done much better on my own although it obviously costs me more money.

Although I carried on for longer than I should, I eventually got a diagnoses of PA privately a short while ago and am self injecting and also changed to NDT. In a short time I can see improvement in my neurological symptoms and my TSH has settled down.

Life is to short to get involved with litigation (in my opinion) - I worked in the legal profession for many years and litigation is a debilitating process - and in any case I don't think there is a snowball's chance of successfully taking on the NHS.

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Sad to read of your experiences. I don't agree about a "snow ball's chance". This is a national scandal that could have dire consequences.

One of my grandmothers was an active suffragette and I believe her legacy is that you should always fight for what is right! She lives and fights in me!

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You are right it is a national scandal and it is has, and is continuing to have, dire consequences on many lives, not because of money (B12 injections are cheap and effective) but because of misdiagnoses or no diagnoses at all. I don't personally believe that GP's are entirely to blame, there seems to be a certain amount of reluctance to go against guide lines - and there are plenty of examples of GP's being hauled up in front of the GMC for doing so.

I just think the "NHS" is too big to fight, it is too closely involved with a powerful pharmaceutical industry and GP's have to follow the party line. I would say, however, that GP's appear to have very little knowledge/training on nutrition and I think this should be mandatory. I don't want to sound cynical but as long as Big Pharma rules the roost, nutrition will just be seen as "quackery" - there is no money in nutrition for them and you can't patent natural substances.

I really do hope you can achieve your aims, but sometimes rather than going through the 'front' door, it might be better to go through the 'back' door - a kind of David & Goliath tactic.

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Correct. I have approached a friend who is a Daily Mail journalist in the hope she might carry the baton.

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Go for it! I read The Mail so look forward to seeing an article on it. Maybe Doctors in the UK would take notice if it hit the Nationals. I had to argue with my Doctor to get B12 injections even though I was lower than the recognised NHS scale. I think they gave in in the end because all the permanent doctors have left my surgery and they only have locums. There has been an attempted mass exodus from my surgery and now the other surgeries in my town are refusing to take any more patients from this particular surgery. I think they are trying to keep the patients they have left, happy!

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On Thyroid UK they are trying everything possible to re-instate T3 - that is being taken away from so many. Will not elaborate as this is the PAS Forum - but do check out the Campaign ....

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I need to get my own B12 sorted before I can try to press for changes in thyroid management but in due course I will take a look at it.

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Thank you for doing something positive for all of us.

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Dewbuc, Perhaps you could start the ball rolling? You have the knowledge and know-how.

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The problem with that theory is that when one is so debilitated with the symptoms of PA and probably other autoimmune conditions, it is hard enough to focus let alone fight.

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I totally understand your situation yet again!

Indeed why should patients do the lazy uncaring GPs's job! They really do not like it when a patient show them for what they are! Ego can't take it. Do not want to be challenged by knowledgeable patients. Unfortunately we patients who refuse to be treated so shabbily fight for a right to proper diagnosis in the first place followed by appropriate treatment... It's an impossible situation. This should be exposed by the media on an on-going basis till the medical establishment acccept we are not going to be fobbed off as it it suits and that serious reforms need to be done. Doubt that will ever happen and the "medical machinery " knows it!

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A friend brought me a copy of Monday's Daily Telegraph which had an article on B12 and thyroxine.

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I believe there is a strong link between hypothyroidism and B12 deficiency.

Was there a website link in the article?

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Hi JGBH. fbirder posted a link to the article this morning. Here it's is:

healthunlocked.com/pasoc/po...

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Hi Foggyme, thank you for info.

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"but why did I have to do his job for him"

I felt the same way so often. ...tired and brainfogged with no-one else willing to stick up for me..... I just wanted someone to take over from me and really try to find out what was wrong.

One GP was really shocked when he realised it was me that was pushing for various tests/appts and I thought to myself...I wouldn't have to if you did your job....

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Absolutely. It's a disgrace.

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Anpbsolutely correct!

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This was how I felt and people like you, Sleepybunny

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Sadly, winning a legal case is not always easy even if you have had very low b12 levels and severe neurological symptoms. A medical lawyer told me if a doctor doesn't always follow protocol, it's not always regarded as medical negligence....! Gasp! Dewbuc

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Absolutely true, but not stepping outside protocol when it is medically obvious that you should do so should be interpreted as medical negligence.

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I agree. I had a b12 level of 115 and was very symptomatic. It was very obvious but the lawyer still didn't think I would win the case. She knows that I have been left with severe burning hands,forearms and feet as well.

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That's probably because those symptoms are subjective and can't be proved. Paralysis, as shown by nerve conduction studies, is totally objective.

The problem with many symptoms of B12 deficiency is that they are vague and unquantifiable, but one of the posts referred to being wheelchair bound because of paralysis folllowing inadequate diagnosis and treatment. Such a case should be valid in a court of law.

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I know what you mean. It should. However, i only had minor abnormalities in nerve conduction tests. Those tests are known for not being accurate. The lady doing the test told me. I also had mild degeneration of the spine but because it wasn't subacute they said it wasn't anything to worry about. A couple of doctors have said it's neuropathy. Anyway, after speaking to the lawyer I thought it might be pointless even trying. I struggle to type so I better go. It's caused real disability. I got the highest rate of disability living allowance.

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I'm so sorry. It seems you have significant problems and hopefully are coping with them reasonably well.

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Thanks Dewbuc . I really hope that the new guidelines help stop this happening to other people. Will rest the paws now.

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Hi Dewbuc and everybody,

I wondered if in UK, it might be helpful to have an APPG (All Party Parliamentary Group) on B12 deficiency but I don't know how they are set up.

There is a list of UK APPGs below.

parliament.uk/mps-lords-and...

I had a mathematical thought today (amazing...B12 sublingual must have kicked in) and it was if ten people on the forum educated two people about B12 deficiency each month and each of those two went on to educate 2 more each month, at the end of the year that would be a lot of people who knew about B`12 deficiency (think this is an example of binomial expansion but brain gave up when it came to calculate the final number).

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I love your reasoning!

I have no idea how to set up a parliamentary sub-committee but I guess someone out there does.

Meanwhile I shall trust in my own common sense, backed up by Dr Google and Amazon.co.uk as my dispensary for 1000mcg replacement therapy.

My family are now aware of a potential genetic risk and what they need to know to self diagnose and self treat since they can obviously not depend on the abysmally failing NHS.

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Hi Sleepybunny.

Wholeheartedly agree about the All Party Parliamentary Group.

Been giving this some thought for a while now...and have a sort-of-plan on where to start πŸ˜‰.

Trouble is (for me at the moment) it'll take a lot of research and a jolly good time consuming to write briefing paper (with evidence!), to get the ball rolling. And a little help from our friends here, when the time comes πŸ˜‰πŸ˜€.

As soon as I can get a bit fitter...πŸ˜‰πŸ˜‰πŸ˜‰

And I love the education 'thing'...wouldn't it be good if we could start with GP's and practice nurses (mine was - eventually - once I'd educated her - a good 'influencer', and helped me to get my GP to 'sit-up-and-take-notice).

πŸ‘

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Amazing that training is to be given to people in schools to recognise depression. Umm another opportunity for Big Pharma to wield its power and push even more AD's onto an even younger generation. First I would have their Iron - Ferritin - Folate - B12 - VitD tested as most modern diets do not contain adequate nutrients to maintain good mental/general health. On Thyroid UK we read more than once a day of the dire results - often below range - of the above mentioned - and yet declared * just fine * by their GP's.

If they only have to tick boxes for a diagnosis of low mood - then I think we should be concerned. I have 5 grandchildren - so yes I am very concerned.

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Perhaps we should teach them to be more self aware and more assertive and self reliant rather than accepting a medical diagnosis of depression and jumping through the big pharmaceutical NHS hoop. Of course it's so much easier to subdue any dissent by crushing the individual's spirit.

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Indeed crushing the individual's spirit is one of their abysmal strengths. They should concentrate on finding root cause of problems instead... but that would involved much too much time and... yes, this dirty word again, money.

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Sleepybunny, That's what I've been doing recently when I started getting neurological symptoms and got on this site as my doctor sent me for counselling, which after three sessions counsellor agreed I was in no way depressed. I tried explaining to a nurse friend of mine about my new B12 (PA) symptoms but she didn't want to listen and thought I was speaking rubbish. Even laughed at what I was saying and tried to dismiss me. My friends and family now realise that it's not just a Vitamin "THING". I now SI thanks to everyone here being so supportive.

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Bengie, it is always easier to dismiss something when ignorance and indifference predominate over interest and care; it also makes life easier for them... and don't we know?

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Personally I think it is very easy to be angry and think that litigation will sort things out. I very much doubt it will.

Many of us on this forum are actually either being treated or treating ourselves using much more frequent medication than is dreamt of or implied in the UK guidelines so there are obviously still problems with existing guidelines.

A good lawyer would always advise that problems be settled where-ever possible without resorting to the courts. Generally the only real winners if something goes to court are the solicitors and barristers servicing the case. It is a remedy of last resort and I really don't think we are at that point. There are many things that are wrong with the NHS - two few GPS, even fewer good quality GPs with good interpersonal skills in dealing with patients to name just a few problems.

If undertaken by a patient liaison group then the litigation would basically result in/be a recognition that all hopes of dialogue and using that to improved diagnosis and treatment were at an end. If undertaken by a charity then I think the charity commission would seriously question any action taken unless that point had been reached.

When parents went to court over thalidomide it took decades to get a ruling - took a lot of energy, destroyed marriages and totally failed to do anything to correct the tragedy that had happened, though the compensation obviously made life a little easier for the real victims.

Please note, that although this forum is sponsored by the PAS it is not an organ of the PAS and any views expressed on it are personal views ... and sorry if that sounds a little legalistic but feel I need to point that out in light of some earlier comments about any role the PAS might play in a 'class' action.

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Well put Gambit62.

I second everything you say.

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You make your points very effectively. Thank you. You are almost certainly correct.

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traditionally it was always a given to treat fellow practitioners with respect.and accorded a little more impetus To cast glory so to speak .I have myself always thought I was an ambassador for my training schools and as such was carrying the weight of representing them on my shoulders.have you thought of switching to another physician who is more likely to take you at your word?I did count my self very fortunate my spouse was a very highly qualified endocrinologist who lived ate and slept medicinetime for family was minimal I volunteered at one point and he did not want his patients to know I was his wife.They all had the utmost affection for him both for his knowledge and care of them.It isn't,t all looking at computers for a diagnosisas you know.I think that modern methods have displaced a great many desirable things not least is empathy technique has become the over riding factor.I hope I did not upset you pecking out on the iPad one tends to lose track sometimes.

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Dubuc also modern medicine seems to have become so specialized that practitioners only seem to be su fait with their own particular field whereas the general doctor had a wide range of knowledge.what was the expression taste odour smell that was drilled into them? Plus listen.

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Hi Dewbuc,I have been posting regarding the treatment I have received which culminated in me being degraded and insulted by the intimidation received yesterday after I questioned if I was receiving the correct treatment.Why oh why do GP's get enraged when confronted by clear evidence?.My son is a surgeon and is appalled at the treatment I have received he says he would always listen to his patients and if he was uncertain about something he would make it his business to find out the best treatment for the individual patient.In other words a "Good doctor"

He cannot believe that a doctor would speak to anyone the way I was spoken to.Especially when I was just trying to get the correct treatment.

Self treatment is now the only option.

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