More advice needed.

[Calypsoplus]

I wrote to the practice manager as advised, about the lack of treatment. Ive just had a text message saying i dont have b12 deficiency anaemia as my haemoglobin and mcv levels are normal, and the guidlines i quoted pre date covid, and they have been told tratment has to be oral cyanocobalamin. She suggests i take 2 tablets dailyfor 8 weeks (100 mcg )and then test my b12 folate and intrinsic factor. Is this as good as it gets ?

[Nackapan]

No. Its not acceptable.You seemingly are being treated fir dietry b12 deficiency.

They need to read current guidelines.

Pre covid??

During shutdown oral b12 being g pushed . We are not in shutdown.

It shoukd go by stmpyons not numbers .

My haemoglobin was 'normal '

My b12 was 106pg/L (200-900)

My Gp also said I had dietry b12 deficiency.

I did not

She also prescribed oral b12

Having not even asked what I eat.

I did get loafibg doses tgrn had to push all the way.

I fidnt quote anything just days I'm ill nothing else's found to be causing my symptons.

Please look at bnf guidelines of treatment fir neurological involvement mentioned.

Wtite or ring fir a doctor consultation.

Read through all the links sleepybunny has sent.

You know your body.

You know what you eat.

Did you list symtoms

Have you tried oral b12 ?

If it does nothing

Tell them.

[Calypsoplus in reply to Nackapan]

My letter was polite, i enclosed a copy of nice guidlines and hull and east riding prescribing committee guidelines, i highlighted all that was relevant to me, including the link with hashis, my long list of symptoms and my b12 rich diet ! Ive read that intrinsic factor ab, should not be tested if taking oral b12 ? Although negative result doesnt rule out an absorption issue ? I asked my manager to refer me to occ health too, which he did immediately, as im on my feet 6 hours solid and its destroying me, will see if they can help x

[deniseinmilden in reply to Calypsoplus]

You have done all the right things, they are just wrong. I have no idea why they are so work-shy and uncaring.

With my lot if you use Econsult you get an email reply saying to contact the surgery. You call and an automated message tells you that "you are 14th in the call-queue", etc. You wait on the phone for 2+ hours and when you get through to someone they say that all the appointments have gone for the day and to call 111 or 999. If you call 111 they say they will send a paramedic team and then, after a couple of hours, the paramedic call handler calls you to say there's going to be an 18+ hour wait for non-emergency situations and so please get yourself to A&E.

The hospital guys discharge you back to your GP.... And so it starts again.

[Nackapan in reply to deniseinmilden]

Oh doesn't it just....What on earth is is happening ??

Ive had various skin lesions since last year.

Even taken photos as never seen apart from by a nurse for my injection.

Last actually seen in Feb 2020 until after a telephone consult I rang snd rang to actually be seen. After trapsing round to 3 pharmacists . One I know from old collecting prescriptions fir others fir over 20 yesrs.

It was him that gave me the extra push to get seen . Stating far too many going to him to 'prescribe' not irritated by me but gp's putting them in this position.

At the time all I wanted was some fucidin cream prescribed as the pharmacist advised./ agreed with me.

Anyhow got seen 2 weeks ago.

After 40mins x2 ringing waiting fir a call back on tenterhooks all day.

Assertive not rude .

A fine line I'm getting better at.

Takes alot if attention to tone and pace of voice.

Quire frankly exhausting as on loudspeaker still as the phone sets off tinnitus and head pains.

This fact totally ignored by medics on the phone asking me to speak up!

Swab taken from lesion in ear.

Scalp looked at but nothing to see??

Took photos at its worst.

She very reluctantly prescribed the fucidin.

Saying oh you can give it a try.

She did refer me to dermatology.

Fucidin cream took 4 days to do anything but then the healing started. Phew.

Got a letter that frightened me as an urgent referral to rule out skin cancer.

She did not mention this in consult

I think a way to get seen? ??

On the morning of the appointment yesterday on my NHS app I saw the swab had grown Staphylococcus.

So that's why the fucidin was working. Phew

Still went to the appt. It said you must GO

My scalp troublesome still.

The doctor looked dudnt say anything even when I asked.

Said a biopsy needed which woujd involve a local anaesthetic and stitches.!

No note reading.

Only asked why the hat ? Groan....

I said about the swab and the ear nearly healed as 10 days later.

Did she think cancer and was the biopsy necessary. ?

I was concerned having just got it right!!

Doctor must've rang a bell as very quickly

A consultant appeared. Looked

Said not cancer and a biopsy not needed !!

To up the strength of cream and review in 4 weeks.

Then she left.

I asked for my scalp to be looked at.

No this was not possible as an urgent appointment.

Only one thing.

My b12 had really kicked in as usually not good with quick replies.

I simply said I was concerned it may be connected or even spread from my head.

She then actually asked if I wanted it looked at!!!

She said nothing there??

If it starts bleeding again to get another referral and possible biopsy.

Like you say so the circuit starts again.

It's taken 6 months to get my scalp better . It's the itching that continues so I suspect inflamed nerves. Vicious circle.

So very pleased to be seen.

But agsin only because I questioned I actually saw a consultant.

So far preserving my ear from more trauma

It may be me??

The consult odd

Certainly exhausting.

Why do I feel the need to take control .

I think it's because all I want is explanations or some reassurance of what they are seeing or doing.

Yes a biopsy definitive.

But what's happened to clinical judgement saying they need a second opinion ect

Had to ask direct questions

Then getting the feeling it's going to say 'refused biopsy ' on the notes.

Which isn't true

As really didn't want to leave with more questions 😒

Still despite asking for a name didn't ask what grade /rank

No badge on

Did get a wink from the nurse present.

Still really no idea what the wink meant as silent.

Definitely encouraging.

Student tucked In a corner quiet as a mouse.

I even made a great show of 4 photos I'd taken to her. A blank face.

This all in a very small timeframe 10mins?

45min wait 0940 appt. Okay despite a very sparse waiting room?

So I woukd always ask exactly who you are bring seen by s so relieved to hear your name being called you forget how yo speak at times. Let done think straight

I think triaging happening even when you get a appointment

So glad the consultant appeared so quickly with her 'eyes

Only the consultant csne up on Google as a consultant.

The saying you have to be well to be ill comes to mind.

I think dealing with one thing skin

It was less overwhelming??

What is happening to the NHS.

I've still colleagues working in it still.

Mostly waiting to retire so just getting through.

Too much time spent on obstacles admin . Not enough clinics

Gps please start seeing patients again.

They are the gateway to services

A and E is fir emergencies

It's now again being used as can't penertrate the system otherwise at times

I was suprised my granddaughter has been seen once in a yesr by a HV.

A video call for a developmental check ridiculous.

Do they not realises their role will be deleted .

Things missed .

Baby clinics not running .

Yet nurseries open throughout covid

Very very worrying having seen so many changes.

Going paperless and virtual does not cut it .

But then I've got ? MH on my notes !

It really shouldn't be this hard.

I actually want to be taken 'in hand'

Open consult.

Feel safe and looked after.

Actually discuss health and way forward.

By the time you've got there and gone over and over the best way 'to deal with consult.

Best questions to ask.

The doctor should take the lead.

Ask the questions

Oh goodness I think confused rather than a rant

.

[Calypsoplus in reply to Nackapan]

Wow ! I know how hard it is, it takes weeks to get a phone consult at my practice. Gp s should hang their heads in shame, they will quite happily throw their nurses under a bus tho, ive sat at a desk with a nurse and had bloods and BP checks done,so why cant i sit in the same room as my GP , i dread to think how many serious conditions are getting missed through phone consults. I know covid is not going to go away but we are all learning to adapt and put safety measures in place, this rule should apply to them too, do the job you get paid for .

[Hidden in reply to Nackapan]

Nackapan, thankyou for writing about your skin lesions, yes I have the same problem and the same ointment, good to know it's working for you.

[Nackapan in reply to Hidden]

Oh thars interesting New to me from last year.

So add skin infections to the ever growing list!!

[Frodo in reply to deniseinmilden]

deniseinmilden This is a very frightening and crazy situation. We're not quite as bad as this here - yet - but I had great difficulty being seen for something urgent recently and people kept telling me to go to A&E. But the hospital dept I needed to be seen by would not see people without a referral/appointment. Eventually got sorted and seen but not without an enormous amount of stress.

[Jillymo in reply to deniseinmilden]

I couldn't agree more with what you are saying - next step maybe bat this to your Mp, they need to address this situation.

[Gambit62 Administrator]

Assuming you are in the UK there was a very confusing period of advice around treating B12 during the early part of the pandemic.This page provides links to the final versions of advice after the confusion had lifted

pernicious-anaemia-society....

This one in particular may be useful to share with the practice

b-s-h.org.uk/media/18275/bs...

If you have a B12 absorption problem you need to be taking doses of 1000mcg+ This is best started after loading doses as it isn't going to raise levels quickly

Suggest you share the page and the article with GP and practice administrator

[Calypsoplus in reply to Gambit62]

What concerns me most is, no one has addressed any of my symptoms. Thankyou for the links, i will have a read, yes im in uk x

[JanD236 in reply to Gambit62]

That’s interesting that the BSH guideline acknowledges that there are patients who self administer IM hydroxocobalamin!

[Sleepybunny]

Hi,

I would not be happy with the GP surgery.

You could ask for a printed copy of the guidelines they are using. You may need to submit a FOI (Freedom of Information) request to GP surgery asking for copy which could irritate them.

Be prepared for a fight and for GP/patient relationship to come under strain.

I'd also print out their text message to file away in case needed in future. I'm not tech minded so don't know how you do this.

Will try to add more later.

Might be worth joining and talking to PAS.

Person who runs B12 deficiency Info has helped some people on forum.

[Calypsoplus in reply to Sleepybunny]

Thankyou, yes i think my letter has irritated them already ! I will get hubby to show me how to print the text or i might screenshot it. I have printed off most of the info you gave earlier and just printed off the links given by Gambit62, my printer is smoking haha, i have amassed quite a file ! I dont know if i should ask to be signed off work but being on sick with no treatment is not the solution and i love my job. I know the local council i work for have a great occupational health team, so i will go see them armed with all my info, but i daren't get my hopes up ... to be continued 😉

[Nackapan in reply to Calypsoplus]

If tih can manage to work occupational health should help you .

[Sleepybunny]

May be helpful for you to include a link to your other thread so people know what has happened before.

For future reference, PAS can offer advocacy services to PAS members in employment issuesPAS membership

pernicious-anaemia-society....

PAS have a leaflet/article on PA and Employment Issues, need to be a PAS member to access it.

pernicious-anaemia-society....

Help with making NHS Complaints

citizensadvice.org.uk/healt...

"Ive just had a text message saying i dont have b12 deficiency anaemia as my haemoglobin and mcv levels are normal, "

Many people with B12 deficiency do not have anaemia.

Many with B12 deficiency do not have macrocytosis (enlarged red blood cells).

NHS link below states "Some of these symptoms can also happen in people who have a vitamin B12 deficiency but have not developed anaemia."

nhs.uk/conditions/vitamin-b...

Summary page below from BSH Cobalamin and Folate Guidelines states

" In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

pernicious-anaemia-society....

My understanding of UK guidelines is that if you have B12 deficiency you should be treated whether or not anaemia is present.

There may be other useful quotes from BSH Cobalamin and Folate Guidelines that you could include in any further letters.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

NICE CKS link below states "Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."

cks.nice.org.uk/topics/anae...

Perhaps you could print this page out for GP or use the above quote in a letter?

Misconceptions about a B12 deficiency

See Point 2 in this article. Perhaps your GPs would like a copy?

stichtingb12tekort.nl/engli...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

See Table 1 in above article which is about frequent misconceptions about B12 deficiency.

Table 1 shows that some patients were told they did not have B12 deficiency because they did not have anaemia.

Perhaps your GP would like a copy?

Should be some useful info in link below.

b12deficiency.info/writing-...

Changing GP surgeries

nhs.uk/common-health-questi...

Have you considered contacting the CCG about the difficulties you are having?

This may stir things up so be prepared for GPs to be unhappy if you do.

Maybe your MP?

[Calypsoplus in reply to Sleepybunny]

Thankyou so much for all this. How do i link my other thread ?

[Sleepybunny in reply to Calypsoplus]

Click on your screen name in above post which should take you to your user page.

There will be a list of your threads.

Click on your thread "Is this normal"

Copy the internet address at top of page...it starts "healthunlocked.com" and ends with "is-this-normal" and paste it into your reply.

I'm not very techy so apologies. Admins can probably help.

[Jillymo in reply to Sleepybunny]

I went through all the above much to my surgerys displeasure when trying to get help with my antiphospholipid syndrome - sticky blood.

I ended up getting pushed out of the surgery by the manager !

😪

[deniseinmilden]

That's the thing isn't it - they've got you either way - if you try to get around their system for blocking you and keeping you out then you feel they will just redouble their efforts against you. It's a nightmare.

[Jillymo]

I'm not far away from Gloucestershire and your reference to 'Death Zone' couldn't be more correct. ⚰️