I have a unicorn doctor

[PlatypusProfit8077]

ohmygoodness…. I know this should be the standard level of care but I’m still in shock.

I just had my latest GP appointment who has been looking after me since my big crash back in March.

She had agreed 3 weeks ago to put me back onto weekly injections after such a dismal response to monthly (surprise).

Now in this appointment she commented on how different I was presenting and I explained how much the more regular injections were helping.

So she asked if I would be happy to stretch it out to fortnightly, I said no and she said “ok, would you like to keep it weekly?”

I replied “actually, I’d like to have you sign off on me doing my own injections as appointments are expensive as well as valuable time for you and me.”

She eyeballed me for a second, and asked if I was confident in that. I replied that I’d done my bachelor degree in 08 so I was a bit rusty but an injection is an injection.

Then she said Ok! And wrote it in my file!!!!

I then decided to push my luck even further and asked if I could give her some reading about B12, and she agreed, saying “If you’ve done some homework for me, I’m happy to read it” so I handed over the BMJ file and PAS stuff that I’d printed.

Woohooo!

I’m so relieved.

[Jillymo]

Whoohoo indeed !

Well done for sticking up for yourself. 🥳 👋

[PlatypusProfit8077 in reply to Jillymo]

Thanks, she is a good egg but I had also started my SI journey without her approval so I felt more confident that I would still be getting treated even if she said no (which removed the desperate emotions from the equation) if that makes sense.

She even said that she had never seen such a dramatic response to B12 injections (though I did think at this point “yeah because the treatment schedule here in Australia sucks. 3 loading doses across 3 weeks was horrible!) - my muscular weakness has decreased immensely, balance and the other symptoms as well. Keeping track of them, and when they reappear after injections helped a lot.

[Jillymo in reply to PlatypusProfit8077]

I have had dozens of eggs and not found a good one among them. My drs answer to my plea's was to say our relationship had broken down and pass me onto another Gp ! If only more would actually listen to the patient.

Talk about go and suck eggs. 🥚

[PlatypusProfit8077 in reply to Jillymo]

That’s awful Jillymo. Have you gotten a good one yet? It’s really not a cookie cutter kind of situation - I’ve definitely come across some bad eggs before!!

[Jillymo in reply to PlatypusProfit8077]

Not as yet and running out of surgerie's - my problem is I have a rather complicated medical history which many cant get their heads around hence passing me on. 🥚😷

I am now self treating on a daily basis.

[Wheat]

Good to hear. All best wishes x

[PlatypusProfit8077 in reply to Wheat]

Thank you Wheat!

[topazrat]

I'm so pleased for you 😀

I did find a Unicorn doctor once. She was young, eager and had recently attended a seminar on P.A - yippee!! Then she went and left - boo!

[PlatypusProfit8077 in reply to topazrat]

Typical! I think my next step with this doctor (assuming she reads the research) will be to a) get her on board with me SI as needed and b) start educating her fellow doctors at this practice and c) educate my region

From there, the world!

[Carrie234]

She sounds like an excellent doctor - genuinely pleased for your improvement, and noticing the changes from visit to visit. And interested in continuing to educate herself. Wonderful, and it will be great for her future patients too.

[PlatypusProfit8077 in reply to Carrie234]

Thank you, she has been great at diligently trying to work out what has been going on. She referred me to neuro and gastro in case it was MG, MS or other serious stuff (she did dismiss PA early on but I think she might be coming back around based on this interaction).

The other great thing was that she totally dismissed the Emergency doctor’s note of “anxiety possible cause”. She said, I can see that you’re anxious, understandably when your body is not doing the right things, but you have things in place (support, counselling) so I’m inclined to think that your anxiety is a byproduct and not the root cause.”

How great is that?! Again, should be the standard but it’s not.

[Carrie234 in reply to PlatypusProfit8077]

The emergency doctor needed to understand that there was zero evidence that you feeling anxious was causing your physical symptoms, that it was not a viable hypothesis. Your doctor sounds like she wants to do her job of making you better. What an absolute gem.

[PlatypusProfit8077 in reply to Carrie234]

Yeah he was awful. I was in emergency for 25 hours that time - I couldn’t walk, hadn’t eaten or slept and couldn’t take myself to the bathroom. So to have him say it was “just anxiety” felt like the biggest kick in the guts.

[Cherylclaire Forum Support]

Great news. Hats off to you both.

It takes courage to ask for what you really want/need sometimes - especially when you have had a bad experience.

GPs rarely work on observation here now, relying heavily on blood tests etc. - more so since the pandemic, 8-minute time constraints, too many patients and the ridiculous idea that a GP can be as effective over the phone/ online. I think this is why we lost so many experienced GPs after lockdown - they were stuck with an unworkable situation.

Keep hold of your's: she not only looks at you and listens - she reads the research you hand over !

[So far, I have had one excellent GP and two excellent consultants : they are still out there, thankfully.]

[PlatypusProfit8077 in reply to Cherylclaire]

Thank you!

It definitely helped my courage knowing that I had everything for SI at home already and so this was just formalising it for my records.

But I can’t help thinking that if all of us are doing this ourselves at home, how will the medical world progress in their treatment of PA/B12D if they honestly believe that oral works or that once every 3 months is enough? At what point does the narrative change?

[Cherylclaire Forum Support in reply to PlatypusProfit8077]

Exactly.

I told my GP that I was going to start self-injecting and she asked when I was going to start. "Yesterday"I told her : I had still been worried that she would try to talk me out of it. She didn't.

I have been totally honest with all the consultants I've seen and only occasionally was that a bad idea. But once it led to a teaching professor completely changing his opinion through discussing me with colleagues : he now thinks that I need the frequent injections and that tablets would be useless for me.

My GP once told me that the only other patient she has who she diagnosed with functional B12 deficiency has been able to manage well for a decade on just the one injection every three months. "Is it possible that, like me, she also self-injects - but has just decided not to tell you ? " [A shame you only get 8 minutes some days !]

Dr Chris Steele, who wrote a foreword to Martyn Hooper's book *, started with this sentence: "During my 45 years as a GP, I have often felt uneasy about the way in which pernicious anaemia is diagnosed and treated...."

I think the good ones already know.

For one doctor, you are changing the narrative already. This is how it starts !

* What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency : Martyn Hooper. Dr Chris Steele ended the foreword by saying "Every doctor should read this book. Most doctors would learn something from it."

[PlatypusProfit8077 in reply to Cherylclaire]

You are so brave - “yesterday”, that’s great!! My GP also said that she’d never seen such a miraculous response to “just” B12. I hope she starts to look into things more.

I’ve found so many people who have had B12 injections now, talking about how sick I’ve been. “Oh yes, I had those injections. They stung, so I skipped the last one,” said my hairdresser. If I skip one, I feel so awful.

I’ll definitely have to look into that book.

[PlatypusProfit8077 in reply to Cherylclaire]

and yes, I’ll be following her wherever she goes! She better not leave my area!

[Doris11]

Hi PlatypusProfit8077 I saw my Gp last week with a handful of paperwork! I don’t know if she was impressed 🙈 but I even had the name and address of the consultant for a referral 🙈 last time she said I had too much time in my hands ☺️

[PlatypusProfit8077 in reply to Doris11]

Love it! Why shouldn’t we be invested in our health?? I understand when they get patients googling rubbish stuff - but mine were all reputable medical journals, the PA society etc.

Medicine moves at lightning speed in research and development, but slow as a tortoise on the ground at face to face care.

[Doris11 in reply to PlatypusProfit8077]

Another Gp said she ‘got something off the internet!’ 😂 it was the new March 24 Guidlines on B12 deficiency! She wrote this in my notes 🙈🙈🙈🙈 it’s good to be informed about our health! My 78 yo mum was shocked when I told her about my photocopies I handed over! ☺️

[PlatypusProfit8077 in reply to Doris11]

I can imagine your mum being shocked - the doctors were never questioned in her day!

A good doctor should want a partnership with their patient! And want to continually improve their practice.

[Doris11 in reply to PlatypusProfit8077]

Absolutely 👍 I’m dreading when my GP retires 🙈🙈🙈🙈

[Wwwdot]

Hi platypusprofit

That’s a great GP. I haven’t physically seen my GP since my diagnosis in October 2022. The contrast between me now and then is chalk and cheese - my skin was grey, I was exhausted and I was struggling mentally and physically just to exist. Now I am back at work and I look healthy and I have the mental and physical energy to live my life.

BUT what my GP doesn’t appreciate even though I write to tell them is that I have had to invest a lot of time and healthcare effort into me and I am not FIXED but I am now MAINTAINED well.

I SI every day and I am hopeful that in time my need will decrease whilst I can also maintain my health.

I am still looking for my unicorn but given yesterday the GP AGAIN put B12 testing on my bloods - I do despair - I am bracing for the B12 too high aftermath!

But your post has given me hope and that is invaluable. Thank you

🤗🤗🤗

[PlatypusProfit8077 in reply to Wwwdot]

I’m sorry you’ve had some sour experiences - Telehealth has its place but it really isn’t a substitute for face to face, especially with chronic or acute care.

I’m glad you’re doing better now on SI! It’s amazing how much those 1ml injections help!

[PAapr22]

I have been asking my GP about training me officially and providing B12 for SI. And the nurse just called me yesterday and will train me up. A big step forward as currently I have to go in monthly. I personally inject weekly.

[PlatypusProfit8077 in reply to PAapr22]

That’s a great result too! Hooray!

My doctor pointed out, quite reasonably, that she teaches new diabetics how to care for themselves and inject insulin, and IVF patients need all those hormone injections that they do themselves. So why would this be any different?

[Doris11 in reply to PAapr22]

Fortunately I’m a retired nurse 👩‍⚕️

[PlatypusProfit8077 in reply to Doris11]

I’m a career change nurse - doesn’t quite count as retired but the learning is still there!

[Doris11 in reply to PlatypusProfit8077]

Good one ☝️

[Myoldcat]

Marvellous! A great result. Sadly, it's no more than we should expect, but far more than most of us can hope for. One small step for B12 D awareness! I'm very fortunate to have reached the same agreement with my GP. Well done to you for diplomatic persistence, and to your 🦄👩‍⚕️for listening.

[PlatypusProfit8077 in reply to Myoldcat]

Thank you! It’s been a journey but I’m very aware that it’s a shorter one than most people here have had to endure. I can’t imagine going years without this kind of support.

I’m glad you have an agreement with your GP too.

[auldreekie in reply to Myoldcat]

Hi Myoldcat, did you see my message below to Platypus? My GP wants to talk to other GPs/Consultants who are sanctioning SI or more frequent than 3 monthly innoculations. He says he just needs 'an expert to explain why it's ok'. I smell a case of 'minding his back' never the less...!

Could you help letting me know who your GP is?

This seems ridiculous but we have to play along don't we!?

[Myoldcat in reply to auldreekie]

Just read your message auldreekie... in my case, I saw a private consultant in Cambridge who specialises in B12 and Iron deficiency, and I'm sure it was the letter from him that gave my gp the 'permission' (or back-minding!) to sanction my SI and B12 ampoule prescription. I'm not sure how willing he might be to chat with others - and I am out of the country atm - but how about directing your gp towards CluB-12 as a first step? An alliance of specialists and patient groups with links to research, etc. The specialist I saw is a member. club-12.org/

[EllaNore]

That's fantastic!! One will tell another and hopefully she will pass her open-mindedness on to other GPs. Good job congrats!

[PlatypusProfit8077 in reply to EllaNore]

Infection in the best way 😉😉

[EllaNore in reply to PlatypusProfit8077]

Right! The infection is terrible, but it had a silver lining. I hope you're getting better.

[auldreekie]

Hi Platypus Profit 8077, My GP is a baby unicorn! He has agreed that my self injecting is self evidence that I am deficient. (We've done lots of tests but getting nowhere - he said he needs a specialist (or a pa/B12 guru - his words!) to tell him he can administer (or I can) weekly or at least more frequently than 3 monthly B12 injections. I said I would ask here as I've seen other say their GPs have agreed to frequent injections. I assume there is a GP network..? Would it be too much to ask for your GP's name etc? Not sure how PMs work here but I am sure I'd find it!!

And what did you give your GP - The PA testing the new Nice recommendations? Or something else?

Sorry to bug you about this but like you I feel I've made a huge break through....and the more Dr's we can educate the better for everyone!!

I've just noticed you are in Australia Platypus!! But are referencing the BMJ?

[PlatypusProfit8077 in reply to auldreekie]

Hello! I gave my GP the articles by Bruce Wolffenbuttel (many faces of cobalamin deficiency; Vitamin B12 and the Only One Chance article from PAS).

I didn’t bother with NICE because Australia has their own health guidelines (not that I can find my state’s versions!)

I used the BMJ articles because they’re a reputable med journal and Australia does follow Britain’s lead in a lot of health areas (and America etc). I’d like to think that as long as the studies and articles are non-biased, and are well researched, we should be able to share them worldwide.

Next visit, if she is happy to continue talking PA and B12 stuff, I will ask her about the B12 society of health professionals (CluB-12) and I will also check if she would like me to share her name.

[auldreekie in reply to PlatypusProfit8077]

Thanks for prompt reply Platypus. Much appreciated. All 💪💪 for us!!

[Midnight_Voice]

is it easy to get through to them on the horn? 😛