Morning Live - turn on your TV

[Cherylclaire]

Morning Live : they are about to talk about B12 deficiency. Have a watch and see what you think.

[Cherylclaire Forum Support]

I thought, given the short amount of time given, the TV doctor covered quite a bit quite fairly. Even in symptoms listed. Good that she was not afraid to say "pernicious anaemia" - and called it the most common cause of B12 deficiency.....

which of course brings me back to the research request I posted about yesterday, restricted to those with a PA diagnosis.

Common to have PA, not so common now to get any such diagnosis on record.

[Sleepybunny in reply to Cherylclaire]

Hi,

Link to programme - hope I've got right one.

bbc.co.uk/programmes/m000nxkq

[Cherylclaire Forum Support in reply to Sleepybunny]

Thanks, Sleepybunny - a lot of better information re B12 deficiency than we usually find.

[Gambit62 Administrator in reply to Cherylclaire]

is just over 31 minutes in.

Unfortunate that the start of the presentation implies that the symptoms are caused by anaemia though other bits do imply that some symptoms are due to B12's involvement in other processes.

[Pickle500]

Thank you for this, it's great to see at least some coverage on national TV. I think the episode is the one dated 8th November isn't it?

They seemed to articulate things very well including neurological problems - pins and needles, numbness etc. This TV Doctor seemed to know more than the average GP.

[Cherylclaire Forum Support in reply to Pickle500]

Good to see some awareness that there is more to B12 deficiency than "tiredness".

PS: We really need a new descriptive word for that symptom, don't we ?

[Pickle500 in reply to Cherylclaire]

Absolutely we do. If I were a GP I'd find it incredibly stressful to deal with someone who said they were tired all the time, yet I have seen other Doctors in online videos and others say this is the primary presenting symptom.

My hunch says that this may be the case for Pernicious Anemia, where it may be a dripping effect that slowly erodes the energy levels. But tiredness was never a reason I thought to go to the GP, I just thought I should sleep more. Eventually when I did go to the GP for 'heat in my body' and exhaustion I was asked 'if I'd been stressed lately'. And then my hopes of getting any diagnosis or clues to B12 were dashed, not that I knew then anything about B12 but the clues were there.

So yes, some sort of 'extreme fatigue' or 'unusual tiredness' would be more helpful maybe!

[Cherylclaire Forum Support in reply to Pickle500]

Yes - because when you reach the level of tiredness that means you are propping yourself up at the bus-stop by using the bus-stop sign on the way to work, you're probably already unemployable !

I also did not bother to go to the GP when I was tired - I went when I was tired, had daily diarrhoea and lower back/left hip/groin pain.

Today. eight years on, I sat down on the floor in TK Maxx, so a customer asked me if I was alright. "Yes, I'm just so tired" I answered. Rare, still there.

Sometimes you don't realise when enough is enough - until there is just no more left.

[Nackapan in reply to Cherylclaire]

Thete definitely needs to be a better word.Tired is overused so lost its true meaning .

As has Flu when used for a cold.

I dud go to thd a G.p as my 'tiredness ' was affecting everything from work to mood to unable to digest properly.

Headaches.

Kept having to sit down as kegs so weak.

Felt like a rope pulling me backwards trying to cycle or swim.

I was also so pale .

Kept falling over

Prescription glasses? Wrong

Kept going back.

I just knew something was wrong.

All I coukd think of wax iron anaemia

I was told by G.ps

Stress

Menopause

Depression perhaps

One thought yoga would cure me.

( didn't see that one again )

One G.p reluctantly did a blood test.

Not anaemic but a lower count than my norm.

B12

Folate NOT tested.

So thought I was unfit.

Did more cycling ,swimming ect

Yes abd got more 'tired ' until exhaustion and collapse abd vertigo.

My body said NO more .

I now after s trip out often have to sit and stare for an 'lost' hour or so.

To settle brain and wait for nausea to pass .

Well that's not 'normal' tiredness!

[Cherylclaire Forum Support in reply to Nackapan]

No, none of that normal !

Noticed on TV this morning that women with endometriosis wait averagely 9 years for a diagnosis. Most common initial symptom for that also seems to be "tiredness".

Explanations a necessary part of getting on the right track for a diagnosis I think.

I listed my symptoms on two sides of an A4 page - the first side was physical symptoms and the second was mental (memory, cognitive issues etc). I did this as two tables both with two columns so that I could name the symptom and either give a short explanation or an example too.

They started to look a bit less "normal" when the second column was added !

The first haematology consultant I saw studied these and then asked if she could photocopy them for their records. I have not offered this list to every consultant I've seen, as not always appropriate -but certainly not trying to withhold information that might get me further forward.