GPs ignorance and zebras

[Nic878]

I'm on this forum to try to help my partner with b12 deficiency he has suffered for years and been told by GPs that its all just anxiety. I myself am diagnosed with ehlers dhanlos syndrome its a genetic condition i wasborn with. Iv recently had a baby and during my pregnancy the consultant at hospital informed me he was putting me on asprin. When I asked why he said it was due to my auto immune condition and when I asked which auto immune condition I suffer from he said ehlers dhanlos. I was speechless its a genetic condition I was born with. Those of us with this call ourselves zebras. The reason for this is drs are taught when they are training if you hear hoofbeats its probably a horse so dont bother looking. They are taught to not question and look for obvious answer. I'm realising the more i read yourselves and my partner are also zebras. Those of you out there who feel alone im going to tell you what iv always said to my partner long before we found out about b12 deficiency. You only need 1 person to believe you and if you are on this forum you don't have 1 person you have many. Iv been there myself I spent years wondering what was wrong with me wondering why I wasn't like anyone else finding an answer is important. Don't let anyone gaslight you, you know your body better than anyone trust your instincts

[Nackapan]

Very very true.

My daughter had undiagnosed b12 deficiency to the point of megobolastic anaemia. Later stage !

The root cause if genetic problems to raise to the surface .

Shes got POTS directly from untreated b12 deficiency then also HEDs ( ehlers danlos )

Took years and year's to try and get a life.

Despite me pushing fir her to be seen by various consultants from the age of 9 .

I knew something terribly wrong .

Being dismissed and not listened to the worst .

It took one general medical consultant in A and E to listen to her.

Noone puts all the different consults together to get the full picture .

[Nic878 in reply to Nackapan]

Your right about no one putting everything together its a typical thing to be told when you go to the drs "one problem at a time". The GP we complained about has gone right back through his notes and basically put comments on to make it look like it's all in his head. We now have access to all his medical notes. I asked her about his results being on the low end 5 years ago (222) she told me they were fine when tested in 2020 so I asked her the result three hundred and something apparently but once I had access I can now see he didn't get tested in 2020 she literally lied to our faces

[wedgewood in reply to Nic878]

It’s really shattering when you find out that doctors lie .Doctors lying has happened 4 times to me . It’s emblazoned on my memory .

[Narwhal10]

Hi Nic878,

At present I cannot think of a beautiful name for a zebra. Elhers Danlos has been discussed months ago here.* I like my emojis so I put 🦓.

I also know that these ungulates (related to hooves) have their own individual ‘black and white’ markings. On a par with the human fingerprint.

The hooves beating in medicine is called ‘heuristic thinking’. Quickest, easiest solution. Back when I was a midwife, often mother’s would ask the question, Why ? When I couldn’t answer, I would say.

‘Medicine is not black and white, there a whole spectrum of grey and a rainbow in between.’

Being a science nerd, I know about the colour spectrum. Cyan, magenta, yellow, blue, red is being missed by black and white thinking!!!😱

* Again, a young woman’s voice was repeatedly not heard. It is a constant theme.

😉

[WIZARD6787 in reply to Narwhal10]

The horses and zebra is a physician's creed. It is not unlike attorneys who have the creed that a good negation is one where both sides are equally dissatisfied.

Both are creeds of mediocrity. Less effort on the part of the professional for more money.

Helps to know where a professional is coming from.

I am an environmental scientist and when presented with a problom I am often asked "what are you going to do." I reply "gather information and data and then design a solution."

Often the reply is you must have some idea which is a tell I may not want to work with that client. I often reply if you give me the name of a consultant then I can tell you what they will do as they are one trick ponies and that is not the way I work.

Fact is I am honest and state I am more expensive but executing my design is over all less expensive. The design is only 10% of the over all cost. It works well and weeds out the clients I don't want to work with.

[Narwhal10 in reply to WIZARD6787]

Oh WIZARD5787,

You are amazing. I giggled when I read gather data and information. I kinda guessed you were a scientist of some kind. From reading your posts.

I started off doing computer programming, a software engineer is the fancy name. People never comprehended and asked what I was doing wherever I was. Well you want me to design a whole system but I’ve got to understand how you work to create something ‘bigger than your organisation’. It has to fit in with your suppliers, your banking, your end products, how you ship them. It has to be user friendly, have firewalls. But first, let’s see how your company operates and all the people you deal with. Then I can go to a drawing board for an initial plan. If I haven’t included everything then I’m not starting it until every aspect is considered. They didn’t understand that. Can’t you just start ? The long answer is NO, I can do a short answer too, in binary code but it will translate to NO. 🤣😂

[WIZARD6787 in reply to Narwhal10]

"The long answer is NO, I can do a short answer too, in binary code but it will translate to NO. " That made me laugh out loud.

I am a scientist because I prefered to use my brain that way to make money. Not the other way around. If I could have figured out the vulgarity of art and commerce I would have done that. I built buildings until that got boring. Building buildings is dangerous and I had used up all my chances and figured out someone would die on my site so I stopped.

My clients that knew me would ask "how much is it going to cost me to find out if you want this job? 25% of my work was determining the scope of work. First I had to determine if the problem was worth trying to solve.

[Narwhal10 in reply to WIZARD6787]

Yes, oh Wise One,

If the problem was worth trying to solve. Or is worth solving. Quite often I talk in riddles which amuses people. When well, my mind is going 10 to the dozen because it’s made all of these computations before. My own neural pathway is silly and I go down rabbit holes. Hence ME not understanding your B12 and B9 treatment needing more adjustments and configurations.

Yesterday, because I can commute to and from the P.A.Society, I went. Afterwards, I popped into a shop and helped a visibly disabled lady. We chatted, she disclosed her medical history. I said about ‘neuro plasticity’ where the brain rewires itself via redevelopment and growth. She knew about it but did know know what it was called.

You choose to make money by using and applying knowledge. You know exactly your market and your worth. Now, I know that if you called the brain an app, people would use it.

On my commute to HQ, I laughed and joked with 2 other ‘nerds’. One worked for a train line and quoted or told me sum of the ridiculous things the average person asks.

At a platform in London, he was asked, ‘Which way is the train coming from ? Note, it is a terminal station. So, he stared at the train then moved his head 180 degrees to look in the other direction stared at the shops and restaurants for 1 minute. The person still did not understand !!!

So, with regards to P.A./vitamin B12D, IF a person starts on the topic of P.A. they will discuss B12D. If you start on B12D, you will NEVER explore P.A.

How to Train Your Dragon. 😜

[Nic878 in reply to Narwhal10]

Sadly many when ehlers dhanlos syndrome are sectioned before diagnosis as GPs think its all in their heads. I didn't go through this as I thought for years that everyone felt like this.

[Hectorsmum2]

The problem with disregarding the unusual ie the zebra is that when it comes to medical issues the unusual is really common. Most families have one or two people in them with a rare condition of some kind. It is shoddy thinking but even worse is the fact that most doctors seem unable to recognise a horse when it is coming with common conditions like thyroid or PA going undiagnosed or poorly treated for years.

[helvella in reply to Hectorsmum2]

They also miss that asses are not horses. And the difference between a Shetland pony and a Shire horse is staggering.

An irony being that a zebra is incredibly obvious - you pretty much can't fail to see they are different.

An image: In Africa, doctors sitting on asses watching horses being ridden past and not looking down and realising they are not sitting on horses, and not turning round to see the herd of zebra, therefore assuming all equines are horses.

[ktwing in reply to Hectorsmum2]

There is also the problem that in medical issues where diagnosis is not straightforward and where therefore many people are misdiagnosed or not diagnosed when they should be (B12, Thyroid, just two obvious ones, but there are many), the numbers that doctors are looking at show conditions as much rarer than they actually are!

An example: My neurology consultant diagnosed me with relapsing remitting MS in 2017, having found signs of demyelination in my MRI and I asked him 'but is it possible that this could actually be caused by untreated B12 deficiency?' (partly because I had other symptoms which fit better with that diagnosis) and he replied 'Well yes, it's possible, but that would be much less likely, it is very unusual'.

The same consultant (whom I actually quite like, and find reasonable on many levels) was horrified at my continuing every other day B12 injections, saying 'I have never given any of my patients such frequent injections' - seemingly unaware both that this frequency is in the NICE guidelines, and that perhaps a large number of his patients are going untreated or undertreated (I am only on B12 at all, having researched and fought for it) and therefore perhaps his observation that demyelination caused by B12 deficiency is very unusual is fundamentally flawed - he assumes demyelination is not B12 related and even if he thinks it is, he is undertreating it!

I wish there was a way to educate these medics and save the patients from further harm, but it's a big ask when we are struggling just to live well ourselves.

[Hectorsmum2 in reply to ktwing]

What we need is for doctors to start accepting training from charitys who support patients like ourselves. At the moment not being offered but the most straight forward way to change minds.

[Narwhal10 in reply to ktwing]

There’s always a way. The Pernicious Anaemia Society network with so many people and organisations that it would blow your mind.

I personally write ‘Thank you’ cards or letters and then put ‘For your C.P.D.’ I am basically saying, ‘Use me as a case study, to improve your learning so that you can have evidence for when you have to appraised and re-validated to continue your licence and medical practice.’

In short, constructive feedback. 😜

Continuous Professional Development