Now guidelines

[Orchard33]

Looks like we'll be firing sling-shots at thick stone walls for a while longer. Perhaps one shutter is open a little on one high window. What's to be done now? What are the ways forward?

[clivealive Forum Support]

So after 52 years with Pernicious Anaemia I now have Autoimmune Gastritis 😒

At least (at 83) I'm over 16 and can still "qualify" for my B12 injections.

I was pretty disappointed by the new guidelines as much as I could understand them,

[Jillymo in reply to clivealive]

Amazing isn't it that the word Pernicious has been dropped ? I doubt very much that you would have survided without your B12 injections or lived to the grand age of 83.......without them it would have been pernicous would it not ? There's logic in there somewhere !

I was disappointed with the guidelines too but at least I qualify with autoimmune gastritis & crohn's which was recently diagnosed.......that was a stroke of luck.🍀☹

Not sure if that is a bonus or not. 🤔

[clivealive Forum Support in reply to Jillymo]

Yes I was "given" two years to live in 1972 unless I ate raw liver three times a day or had B12 injections for the rest of my life. I opted for the injections.....

[OldmanD in reply to clivealive]

Glad to see ya on. . . . . . And a good job ye opted for injections. . . . . . My paternal line were reared on liver daily just about warmed up as we'd call it. . . . . I dont know that I could face it today but we were all got used to it children. . . . . My Dad has two uncles laid to rest in Canada at very young ages we presume because of this problem . . .

[Cherylclaire Forum Support in reply to Jillymo]

Award yourself some bragging rights, Jillymo.

I'm just a functional deficient ....and that one didn't make the list.

Regrettably, most of my brownie points are gained through my family's long list of autoimmune problems.

The symptoms list seems far too flimsy. Maybe we should start our own ?

Gives us something to do while we wait for the rescue party....

[Jillymo in reply to Cherylclaire]

The symptom list is totally inadequate with so many symptoms left off the list.

It is all very well to say you are functional deficient......but has anyone checked as to why ?

We are very often referred to a neurologist so they are obviously aware of our neurological issues yet refuse to address ! I insisted I were seen by a gastrologist. It was his testing that brought the crohns diagnosis, I hadn't even considered crohns albeit I suffer with gastritis. ☹

Maybe we should call in the calvary. 🪖🎺

[Cherylclaire Forum Support in reply to Jillymo]

Can't yet hear the thunder of galloping hooves nor yet see the dust-cloud on the horizon......

[Mixteca in reply to Cherylclaire]

We might as well wait for the Tardis to come get us...

[Cherylclaire Forum Support in reply to Mixteca]

True.

Just wondering: if functional B12 deficiency no longer exists, do I have to have another seven years of tests done all over again to try and find an alternative diagnosis that doesn't disappear ?

[Nackapan in reply to clivealive]

Yes ive found them confusing too.Too much to interpret how you want to .....G.ps wil not have the time to wade through it all.

Might give me more trouble keeping my b12 injections as don't seem to qualify apart from initial very low b12 serum test .

Will try and read more of it

[Cherylclaire Forum Support in reply to Nackapan]

An initial very low serum test result used to be a sure warning signal for PA. Even if half the patients then got lost through the negative result from a single "conclusive" IFab test given later !

I was lucky - in that my initial B12 result was only 1 ng/L below range. "Thank goodness we caught this early ! " my GP said. For that reason, when I failed to respond to treatment, I was given plenty of tests. It was the MMA test that rescued me, giving me a diagnosis.

Take your time reading the guidelines, Nackapan - it seems that there are also plenty of additional explanations to click on for each decision made. I haven't got around to them yet as I just printed off a hard copy.

[Cherylclaire Forum Support in reply to clivealive]

Me too, Clive. Surprised myself.

Guess I was still subconsciously hoping for some answers further down the line !

Carry on regardless for now then.

[Sunshine1932]

Do you know where I can read the new guidelines please.

[Asselchen in reply to Sunshine1932]

nice.org.uk/guidance/ng239?...

[Sunshine1932 in reply to Asselchen]

Thank you

[FlipperTD]

Sling shots are good, but trebuchets are better.😀

[NOTI1]

Good morning, I recently had loads of blood tests in my latest attempt at getting my surgery to acknowledge and increase treatment for my PA symptoms. All were fine although my iron profile tests were mostly lowest on the range. I had a follow up telephone appointment yesterday and so emailed the link to the new guidelines to my gp first. He seemed interested in the new advice; I said that I would like to try increased B12 injections and iron to see if that helps my symptoms. He was happy to try the iron and more regular B12. He suggested 6 weekly and I countered that with 4 weekly. I am now on 3 month trial of 4 weekly....not perfect but definitely progress after so many years.

I asked for my email to be added to my records with the guidelines. It is now there for any gp to reference which I think is helpful.

[Cherylclaire Forum Support in reply to NOTI1]

I also think helpful, and a wonderful idea !

I hope a three-month trial of 4-weekly injections will help you, and prove to your GP that more is sometimes more !

You might be the first beneficiary of these new guidelines, and may well have opened the door for others at your practice to get more effective control over their symptoms, and a better quality of life through that.