Deficiency vs Broken

[Wwwdot]

Hi Guys

As usual I have been mulling over my recent GP experience of rolling eyes (aka “looking for their brain” courtesy of Narwhal!).

I don’t think GPs get the difference between a body being deficient in B12 and a body whose B12 system is broken. Mixteca made the analogy of putting fuel in a car and then losing that fuel - it’s spot on.

Deficiency implies a top up is required to restore and correct the body and that fundamentally all is well. That an “event” created a temporary deficiency. That is how I think many GPs see B12D and PA. It’s like running out of fuel in a car. All you need to do is fill it up again.

But it’s much more than that for us because there is no storage and recycling facility- ours is broken - so we only have what is in the system since the last top up. My fuel tank is broken - I don’t seem to have much left from one day to the next - so not only do I slow down but my “engine “ starts to phut, so battery does not charge properly so lights fade, windscreeen wipers are weak etc, heater and air con not working properly - pop some fuel in and hey presto - off we go again!!!

My broken B12 tank only holds enough fuel for one day it seems. Hence I do not feel great on less and start to phut! It’s for my GP to prove otherwise.

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[Thrones12]

Spot on wwwdot xx

[Permexpi]

I do like a good metaphor and I think the 'broken fuel tank' is a good one! It seems to me that doctors very often treat symptoms rather than looking for underlying causes. Understandable I suppose when they see each patient for maybe 10 minutes. I have heard it described as going to the doctor with a splinter in your finger and coming away with a prescription for painkillers and anti-depressants.

[Wheat]

Hello wwwdot, totally agree!

You said 'My broken B12 tank only holds enough fuel for one day', that is my experience too x

[Wwwdot in reply to Wheat]

Welcome to the 24 hour B12 Club!

[Wheat in reply to Wwwdot]

Wish there was a badge for it, would proudly wear it. 😀Best wishes x

[WIZARD6787 in reply to Wheat]

I will design a badge in my head. Maybe a syringe crossed with a fist or maybe a middle finger. Surrounded with flowers. Green background with gold for the objects. With gold trim. I know a person who can embroider it. They are in Greenock Scotland. 🙂

[Wheat in reply to WIZARD6787]

Mmmh, yes ok to syringe , the idea of middle finger made me laugh but perhaps 👍 is another option . No flowers as its 'no bed of roses'. However its your design badge, so create as you please.

[Wwwdot in reply to Wheat]

We are all roses amongst many medic thorns!

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[Mixteca in reply to Wwwdot]

Great analogy! I've not figured out what's happening with my tank or why - I can't even drive! 😭

[WIZARD6787]

A thought. The GP is fearless as they have no risk. I can somewhat put my GP at risk with writing. Pretty much write to create a record and if there is damage later the GP might be at risk although not likely. It can be uncomfortable for the GP to consider it. I call it putting the judge on their shoulder.

When writing I always praise and express gratitude for their efforts. I do not feel any gratitude. I also am aware humans tend to focus on the last issue written.

Be clear the GP will always win in a he said she said situation and very likely will not be truthful. Writing not so much. In a real way you are making it easier to deal with the issue than to ignore.

I can it Nobel Cause Syndrome (the end justifies the means) It will never be a diagnosis as psychiatrist suffer from the same illness and their patients suffer because of it.

The branding of B12 Deficiency does have a huge impact on both the general public and physicians. It is easy to treat a deficiency and bring things back to "normal" Same with Pernicious anemia which is fatal. It is easy to keep a person alive.

I have noted that many who write books have experienced B12 deficiency. It gives them some insight although it seems to be only what they have experienced.

You got your end of it!!!!! It is a difficult task.

[Wwwdot in reply to WIZARD6787]

Hi Wiz

You are quite right. Once I have my blood results I will write to them as I always do to have in my record that I self treat and know what I am doing (that’s a bit of a fingers crossed behind the back!) but to date my bloods are going in the right direction and that is the acid test in my view AND I am generally symptom free until I start to try to reduced my self treatment.

We should all write a book - like a PA Daisy chain!

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[WIZARD6787 in reply to Wwwdot]

Good on you for persevering and being "generally symptom free" no small task that!.

For me finding out what does not "work" is the only path to knowing what might work" optimally.

I like the fuel tank analogy. Works with when I go faster I use fuel up quicker.

[ACritical in reply to Wwwdot]

Ahh , conundrum… No energy for taking up another fight in this way. I feel soooooo tired lately even tho I self inject, take care of the co- factors. The supplements now make me worse even in small amounts and not being able to take daily, the co- factors have to come through what I can manage to eat. As supplements they are not absorbed and therefore I feel I go backwards rather than staying stable . I felt ok after my injection yesterday and decided to take up the challenge and go for a walk in the woods with my hubby, I loved it. But around 18.00 I was finished and sat to watch a bit of telly, was in bed at 21.00. This morning I feel drained and washed out again even though I slept through .

[Wwwdot in reply to ACritical]

Hi ACritical

Totally get the pick your battles and also that totally washed out feeling. I call those my healing days when I load myself with B12 and then chill to let it work its magic.

Do you take different forms of B12? Since I have been mixing Hydroxocobalamin with B12 complex and methylcobalamin I have had smoother transitions between active and healing days.

I have also found that the type of supplements has a huge effect on me so now I use those without fillers or binders from British Supplements and I can tolerate those much better. I also take with kombucha and water as I found that helped me too.

But everyone’s recovery needs are different and so everyone’s health journey is different too. We just need to keep our eyes and ears and minds open to find new ideas. New approaches that may work for us.

Rest well and look forward to your next walk with hubby! Priceless.

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[wedgewood]

You have put our case so succinctly . Thank you so much . I think that I need a tattoo reading thus —-

“MY B12 FUEL TANK IS BROKEN”

[Nackapan]

Agree

[Technoid]

Oil, not fuel. But otherwise I agree and readers know I love to make car analogies 😁

[Wwwdot in reply to Technoid]

Technoid you tease!

Explain why oil and not fuel!!

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[Wwwdot in reply to Wwwdot]

Food is fuel and oil is blood?

[Technoid in reply to Wwwdot]

The main fuel source for the body in most diets is carbohydrates. But fat or protein can also be used if no carbohydrate is available and there is no minimum amount of necessary dietary carbohydrate. These are the main fuel sources.

B12 and other B vitamins are much more like oil because they enable certain important metabolic processes to run, often being a co-factor (something required for enzymes to work effectively). Enzymes enable and/or massively speed up reactions.

Methylcobalamin is a cofactor for the "methionine synthase" enzyme which enables the methionine/folate cycles, while adenosylcobalamin is a cofactor for the "methylmalonyl CoA mutase" enzyme which converts methylmalonyl CoA to succinyl CoA, an important component of the Krebs Cycle/TCA Cycle, which is the main power source for all human cells.

So B12 is more of an enabler than a direct fuel. That's why we don't need massive amounts of it - its not used as a fuel but as part of the "oil" that keeps everything running smoothly.

Stretching this analogy to breaking point but if you run out of fuel (food) your car just stops. Which is inconvenient. (A bit more so if you cannot find a fuel station). But if you run out of oil (B12) with a full tank and keep driving the car you could break your engine entirely. I know this analogy has flaws if you think about it in depth but for the sake of understanding it roughly approximates.

[EyesWideNow]

What a fantastic analogy 👍

[Rexz]

Very well put Wwwdot and true. I had this exact conversation with my anesthesiologist last week just before my surgery which required general anaesthesia. I made it clear to him not to use Nitrous Oxide in the anesthesia cocktail as it destroys B12.

He was aware of the B12 issue but tried to lay on me the liver stores and that people recover quickly. I said oh no no. My liver stores are no good to me and the only B12 stores I have are what's currently in my blood. He was not aware of this with PA/AMAG. I then schooled him on that the uptake process from the liver is through the bile duct into the small intestine and once the B12 reaches this point it's the same issue as ingested B12. No IF, no absorption...it just passes through. Anyway fortunately he was both curious and fascinated which helped in our conversation. I say we can check the box for another one educated!!

Best wishes to you, Rexz

[Wwwdot in reply to Rexz]

Well done you Rexz!

These stories are so uplifting and so important to show that we are all making a difference in our small way. We are part of the pathway to change and whilst we may never reap the benefits directly others will in time.

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[Brainfoglady]

What a brilliant analogy. So strange that drs don't understand functional b12 deficiency. If only they listened to patients instead of treating a book case.

[Wwwdot]

Hi Brainfoglady

To be fair to them, our condition has not yet had its centenary and much of what GPs are taught is still based on early 19th C medicine unless you are a Consultant Specialist.

Having said that, there is no excuse for arrogance, a lack of compassion or an ostrich approach as that is such facile for one who is supposed to be of superior mind.

But hey, ho, we are where we are, rowing our own boats, our little B12D flotilla - little boats made a difference at Dunkirk and we will make a difference again.

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[Rexz in reply to Wwwdot]

Oh I think my boat is a very little rubber dingy that has sprung many leaks and I'm fatigued from trying to patch them all. Not to mention I've lost an oar so I can't paddle straight.😂

[Wwwdot in reply to Rexz]

Hi Rexz

What a lovely picture you paint of a determined, practical survivor who gets there by hook or crook - going in a straight line is overrated in my view! 😂

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[Rexz in reply to Wwwdot]

Lol, yes, very much overrated!