Back down to earth with a bump.

[JJ1314]

After my excellent experience with the haematologist the other day, this morning I came face to face with what I suppose is the true level of medical knowledge regarding B12 deficiency in the UK.

This morning I had an appointment to receive the first of my 3 monthly injections. As I said in previous posts, I now self-inject every other day but decided to take myself off to get my injection. It went as follows:

Nurse: Are the injections helping?

Me: No, they're not frequent enough.

Nurse: What works for one doesn't work for another.

Me: This one size fits all approach doesn't work.

Nurse: Well, as your B12 levels increase the frequency of the injections will reduce further.

And that's when I thought "What's the point?" and shut up.

Just a few feet along the corridor from where she was giving me the injection is my GP's office. When he gave me the diagnosis he explained the procedure, loading dose then injection every three months for life.

I was sitting in her office wondering how two medical professionals in the same practice, separated by just a few feet, can have such a difference in knowledge. Everyone on this forum knows she's wrong, scary thing is, she doesn't.

Ho-hum.

[clivealive Forum Support]

Well said JJ1314

[wedgewood]

Yes , the ignorance about B12 deficiency / Pernicious Anaemia is scary . It’s because there is no money in it for the Pharmaceutical Industry has no interest in it . And the medical profession is in the thrall of the Pharmaceutical Mafia . But we are lucky to have this forum . I’d have been lost without it . Think of all the folk out there who don’t know that it exists . They just have to go on suffering .

[Av42 in reply to wedgewood]

I have also found the nurses in my gp surgery to be taking control in a negative way I.e. when it came to my 6th loading shot gp prescribed being told i only have five and 6th was for my first three monthly and even checked with head nurse I went along with it at the time as thought I must have got it wrong but now I wish I’d made her go to my gp and actually asked him !

[JJ1314 in reply to Av42]

Wedgewood, Av42, Because I live in Scotland, I contacted my MSP, rather than my MP, a few weeks back 're the difficulties we all face when it comes to diagnosis and adequate treatment. He is pursuing the issue but I'm not holding my breath that anything will change. The issue was raised in the Scottish Parliament in 2012, I believe. Much hot air was generated as various politicians waxed lyrical but to my knowledge nothing changed. You're right, people are needlessly suffering. I think it a genuine scandal. I'm angry that this can happy. I probably won't achieve anything but my MSP is going to be sick of the sight of me and the sound of my name 😀

[wedgewood in reply to JJ1314]

Good for you jj1314. It’s an uphill task . We just have to keep making a nuisance of ourselves. We are lucky to have Martyn Hooper on our case .

[Curlygal in reply to JJ1314]

Who's your MSP? (I also live in Scotland).

[JJ1314 in reply to Curlygal]

Stuart McMillan, Member for Greenock and Inverclyde, West of Scotland region

[Siobhan1965 in reply to JJ1314]

He is mine too! Might add my voice to yours

[JJ1314 in reply to Siobhan1965]

The more the merrier. Particularly when it’s their own constituents, i.e potential votes, contacting them 😇

[Siobhan1965 in reply to JJ1314]

Ha, there’s no chance of a vote. I was the Labour candidate standing against him in 2016. Will talk to him though as worth a go. 😉

[Margaret-S in reply to JJ1314]

Hi Jj1314..I also live in the most northerly islands of the UK and recently said I was going to write to every MSP, MP, First minister and Medical Officer. It crossed my mind to write to as many as possible at Westminster as I think this needs to have a lot of noise made. So many people suffering needlessly 😔

[JJ1314 in reply to Margaret-S]

Hi Margaret-S, I agree that as much noise as possible is a good thing. I considered contacting the local MP in addition to the MSP, but as far as I can recall health is a devolved issue so I decided just to go with the MSP. Could be completely wrong re the devolved issue thing.

I’m not going to let this rest. I’ll wait and see how things pan out with the MSP then decide my next step. The incompetence and arrogance displayed by some medics has irked me somewhat😠

[Margaret-S in reply to JJ1314]

Completely agree with you. The medical profession have shocked me in their uncaring attitude to people who are having their lives ruined . I will certainly make a noise too. Here's to making a difference to a lot of people. 🤗

[Jotk9 in reply to wedgewood]

Thanks to admin and every member on this forum.

[Saya85]

Did she realise it was PA? And not any other b12 deficiency ?

I’ve heard a lot of diabetics and other people have 3-6months treatment to restore depleted levels and then loading doses aren’t required...

Maybe she got confused ?

(Maybe 😏)

[Frances55]

When I had my first loading dose I was very emotional and in tears because I waited so long to get to that point, I was also very tired, and what she said next blew my mind!!!!!.... Well at least it's only a B12 deficiency, not as though your getting told you have cancer..think how them patients feel... I should have reported her... But what's the point.

[JMN2017]

My B12 defiency is, presumably, due to being on Metformin and Ranitidine and feel the same treatment is required as for anyone who is B12 deficient, ie loading doses, continue alt days if neurology until no further improvement etc.

I seem to need alt days as after reducing to weekly, after a couple of weeks, I was feeling so weary and tired etc again. Now, back on alt days, feeling much better again. Am now going to try twice weekly and see how I go. Yes, self-injecting!

So, Saya85 I definitely disagree with what you've heard.

[Saya85 in reply to JMN2017]

Yep it’s never a one size fits all... what I meant was pernicious anaemia would cause a lifelong severe b12 deficiency because you cannot absorb at all (from my ltd understanding)

Obv anyone who is b12 deficient needs a loading dose etc but for some, once replete, supplementation May be enough for maintenance.

If your b12 deficiency is caused by medication that is lifelong then of course you would need lifelong treatment most likely if you could not get enough through diet? I’m assuming that’s what you mean for your condition.

Unfortunately a lot of doctors and nurses tend to look at the acute cases and then forget about the long term treatment/ maintenance. Or the actual cause of it- you end up becoming blinkered.

Its sad all round that we often have to research, diagnose and treat ourselves half the time!

Glad you found a dose that worked for you ☺️

[JMN2017 in reply to Saya85]

Yes, as far as I can assume, my lack of absorption will continue while I'm on this medication. I can't see there is any way I won't continue requiring it in the future as both conditions requiring the medication are life-long.

Interestingly enough, proving the GPs lack of understanding this, when I explained I believed my low B12 to be due to the Metformin and Ranitidine, he suggested changing me to Lansoprazole!!! Ha, as if that would make a difference ...

Anyway, it all just goes to show the level of ignorance re the possible reasons for B12 deficiency. No wonder they think that once the levels are back within 'normal' range, injections/supplements are no longer required.

It does make me wonder about the populations future. Even if diagnosed with PA or B12 Def, there is no guarantee treatment is going to be lifelong, even if the doctor says it will be. If self-injection, what happens when it comes to a time when no longer able to self-inject? Who will be brave enough to administer the life-saving supplement and on the frequency required?

J

[Saya85 in reply to JMN2017]

At this rate I don’t feel I’ll even make it to old age or to a stage when I’m so infirm i won’t be able to treat myself... I already feel 92 at the age of 32. How long can my body hold out 😳

Prayers and supplements lol 🙏

[JMN2017 in reply to Saya85]

Oh bless ...

Yes, you WILL feel better but you will have to make sure you are well clued up, continue to fight for what you need and, maybe, be prepared to self-inject when you have to

At over twice your age, as others are, we have less time to establish our 'case', lol

Certainly, continue the Prayers and Supplements, as I am, and you'll get there

[Saya85 in reply to JMN2017]

Thanks!

I’m gradually getting a grip on it thankfully 🙏

Might need to go private and self treat/manage

[JMN2017]

Sincere apologies @JJ1314

I hadn't appreciated how we'd 'hijacked' your thread. Will stop!!! Please forgive me ...

[JJ1314]

No apology needed. I find reading about the experiences of other sufferers helps me understand my own illness better. And, on a somewhat selfish note, it underlines the fact I’m not the only one and bolsters me when I’m feeling a tad sorry for myself. So, ‘hijack’ all you want 😀

[Wowo23]

Hi jj1314. It so sad to me how clueless docs can be. When I was diagnosed with PA, my b12 was extremely low and instrinic factor extremely high. My primary explained I would need injections for life. She explained I would need loading doses every day for a week, then one shot a month after. At the same time, I was seeing an ortho oncologist in San Francisco. She also monitored my b12 and said No Way. You need weekly injections for life. So, that's what I do now. I also do daily subliguals(under the tongue) at 2500mcg. I believe those help to keep the levels balanced a bit. It does amaze me how docs can be so different in their knowledge. Hang in there and keep after them to get the injections you need when you need them

[Fl17]

Subliguals?

[Fl17]

*sublinguals

[Kate1914]

Agreed is very scary - the ones that post on here are able to articulate their medical issues - its the ones that can't I feel doubly sorry for. I thought I was in the former until I got ground down by a few of my practice nurses over the years. Now I just attend for the injections and try not to get into conversations. I'm not sure if I ever posted on here but before I got my diagnosis I had a GP draw around my feet telling me that my shoes cause my PA. Funny enough I now don't see him

[JJ1314 in reply to Kate1914]

Hi Kate1914, Don’t take this the wrong way, because I really don’t mean offence, but I couldn’t help laughing at your description of the GP drawing round your feet and telling you your shoes were causing your PA. You must have felt you were in a Monty Python sketch or similar. In reality, though, a completely shocking experience that really leaves me speechless as I try to envisage being in that situation.

I agree that those of us who post on here are able to articulate our difficulties and experiences. I get the impression we’re the tip of the iceberg, that there are countless others suffering in silence. I also get the impression that there’s a degree of frustration and anger building because it’s just not our lives that are being affected. The lives of those around us, our partners, children etc are also being impacted by the medical incompetence we’re exposed to.

Treatment is available, we’re being denied it through a combination of stupidity, incompetence and arrogance, not science. I really do believe a tipping point is approaching and that the situation will improve. Because when I read many of the posts here there’s a sense people have had enough and are looking for ways to change things for the better.

[Kate1914]

Hi,

Nope I will not take offence. Looking back on it - the whole situation was a complete hoot.

If you could imagine the situation I was stood there with him on his knees drawing around my feet with a look of horror on my face. When I pointed out that it was also my fingers and I didn't wear shoes on them !! (I'm not a horse before any rude comments) he just grunted and basically told me to go away. I was very lucky I then went back to see a female GP and she was a complete star.