Monitoring

[Davy28]

Hello everyone

Its been a while since i've been on this forum so apologies if this is a common question or if it has been asked recently but I'll make it short and sweet.

I am a pernicious anemia sufferer since diagnosis in 2012 and have been on injections ever since now I don't know if it's just me or if I'm still having brain fog but are people with pernicious anemia not supposed to be monitored by the healthcare system?

If I recall when I was diagnosed I was told I would be monitored at certain intervals each year or something similar? The reason that I ask is that like most people I self administer the b12 hydroxocobalamin and have done for years because I basically gave up with getting help from my GP as they weren't interested in my situation at all and it was more hassle than anything else but I'm just curious as to why they would give up on someone with a fatal disease if not treated as I would be left to waste away more or less if I never took care of it myself?

Am I being ridiculous here ?

I obviously know about the damage it does as I studied it all at the time and just got into my own routine and as I live alone I think it's a bit strange that I never get asked anything not even about when I should be picking it up as I buy it from Germany also like most folks.

I have alot of physical health problems to cope with which are worse now so it's not the first thing on my mind .

I tried to Google search this but couldn't see anything about monitoring patients after diagnosis so I came here as I know you kind people know the ins and outs of it.

Anyway sorry if it's a daft question but I'd like to know either way.

Thanks

Hope everyone is well.

Dave

[Nackapan]

Not daft at all.We are simply not on any protocol for monitoring or health reviews .

Prescription reviews still exist .

Mainly to try and stop B12 Injections it appears

Even diabetics that should at least get yearly checks arnt being seen.

My husband had not been seen for over 3 yesrs .

Then told to make an appointment at the hospital clinic . 7 month waiting list to be seen by a diabetic nurse.

So not unusual at all.

We are certainly not alone.

I get 6 monthly blood tests.

Driven from cholesterol checks.

Was getting them 4 monthly.

But a full bloods are done.

Vit D ,ferritin iron ect.

At least try and get those.

So if deficient in anything know what to supplement .

And can trigger a face to face or phone appointment.

Even though it took 3m to be seen I did get a referral for scalp problems to dermatology .

In thr system at least .

One symptom of B12 def . To get help with I hope.

You have to push fir everything.

T c

[Narwhal10]

Alright Dave,

How’s it going ? It is an excellent question. I am Welsh so I will call a spade a spade or a rhaw.

The NHS is in a permanent state of crisis - fact. So, they are not going to be monitoring us nor a lot of other illnesses, diseases or conditions.

If you look at the way ANY monitoring has been undertaken for PA/B12D; it is by re-checking blood results which will be sky high.

The NHS computers then throw out random error messages of ‘Patient has enough B12 stored in liver for 2 years’.

Several months ago, I learnt that the Society was due to meet with the hierarchy. So, I informed them that it would be an excellent idea to design a Pro Forma (for monitoring symptoms), once approved and implemented into the NHS Computer System, it would be winner, winner, chicken dinner.

Now, PA/B12D when not treated efficiently and effectively has the worst outcome. However, when it is, we can have a wonderful Quality of Life.

The unfortunate aspect is that for some of us, we can have other illnesses or diseases and it is those that can be ‘character building’ to say the least.

Hope you are doing well too.

[Jillymo]

Hi Davy28,

It seem's that once on the one size fits all regime of 3 monthly injections no further monitoring is needed ! Take a look at some of the complications which are accociated with a B12 deficiency........... ncbi.nlm.nih.gov/pmc/articl...

I wonder how many of us were seen by the appropiate consultants or screened for an unerlying cause ? 🤔

[Hockey_player]

How often are you injecting B12? You could try every other day for awhile to see if that helps with the brain fog. Brain fog can be caused by other things as well. For example, concussions or dementia.

[B12life]

if you still have brain fog are you taking b1?

Taking 250mg of benfomax made a difference in days.

I can still have some brain fog but that helped a lot. I should probably start high dosing b1 but am too busy.