REST OF THE STORY

[may61]

Continuing the result of my letter to the doc.Although I did have a win I am still battering the door down. His answer to the question of the 3 doses a week etc he said because I had not actually been diagnosed at this point with Pernicious aneamia Although the original result showed B12 of 132 and MCHC was also low I am not showing any problems with intrinsic factor although this is notoriously inaccurate that is as far as he has gone . I questioned the treatment of 3 injections a week 3rd occasion but he said BNF guidelines are for pernicious aneamia Is this how they are getting round under prescribing, I didn't take anything with me that said anything to the contrary ,but that when I went over the neurothapy symptoms and he agreed that something else was going on and he would refer me to neurology ,In effect passing the buck So although didn't get as far as I would like ,and there are obviously constraints here from someone, so I said that cos he hasn't ruled out PA ,I could still have it or something else? The letter I would recommend anyone to do ,because it means the doc is ready to have the consultation with you ,giving his reasons and I was able to put the full story Cos let's face it you forget half of what you want to say Hoping cos bin referred they will get to the bottom of it I believe that was the right thing for me . He told me to only see him ,you know the saying softly,softly catchee monkey He on board, and no point putting his back up ,because I could have walked out with nothing, this way I made some progress and he is treating my symptoms seriously.ready for the next chapter. What a disgraceful position for our nhs to be in but knew it would be a fight cause of past with hubby being bipolar Ah well 💉🌡💉🌡💉🌡

[Sleepybunny]

"he said because I had not actually been diagnosed at this point with Pernicious aneamia Although the original result showed B12 of 132 and MCHC was also low I am not showing any problems with intrinsic factor "

Hope your GP has a copy of page 29 of the "BCSH Cobalamin and Folate Guidelines" which mentions when someone can be diagnosed with Antibody Negative PA (that is PA where the IFA , intrinsic factor antibody test, is negative).

My understanding of page 29 (I'm not a medic ) is that if someone has low B12 (with causes other than PA ruled out), has b12 deficiency symptoms, negative IFA test result and responds to B12 injections they can be diagnosed with Antibody Negative PA.

Martyn Hooper, the chair of the PAS (Pernicious Anaemia Society) had negative results more than once for the IFA test before he finally tested positive.

[may61 in reply to Sleepybunny]

Yes, am in the middle of his book. Battering my head against a brick wall just dislodged one brick ,think the wall will take a bit longer.Ta

[Gambit62 Administrator]

Personally think the reference to having to be diagnosed is a red herring

The NICE guidelines don't mention this - recommending referal to a haemo but in the absense of that recommending the protocol per the BSCH

cks.nice.org.uk/anaemia-b12...

The BCSH guidelines are quite clear that, given the problems with IFA test this should not be used as a way of ruling out PA as a cause. Though they aren't quite so clear the message is that treatment would only be different if there was an obvious cause that wasn't related to absorption.

[may61 in reply to Gambit62]

Thats what my original blood results said ,and i agree with you i thought it was a red herring but this is the third occasion I have asked the question My blood results say Moderate risk of clinically significant B12 deficiency,Check for intrinsic factor antibodies-?pernicious anaemia.Interpret results in context of neurological symptoms/FBCresult If deficiency suspected then give trial of treament with IM B12 replacement and monitorfor improvementIf deficiency confirmed then consider cause/Haematology referral I found the nice guidelines this morning My doc giving me my injection on thurs so will print it off but whether i will get anywhere?also when they tested for intrinsic factor i had had an injection one week before He done nothing to rule it in or out think he should have referred me to Haemo? Thing is I new to this and just learning about it really think he out of his depth Also said to me at consultation, was the fact that he was wary of overdosing Ha! soon put him right about that,

[fbirder]

My haematologist, Dr Knowitall, said I didn't have PA at the very start of the consultation. I asked him what his explanation was for a combination of low B12, anti-Parietal Cell antibodies and gastric atrophy. He grudgingly admitted that I 'probably' had PA.

You could try asking your doc what the cause of your deficiency is if it's not PA. Because the BMJ say - healthunlocked.com/api/redi...

In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life. For temporary causes, such as pregnancy, the treatment can be reviewed when the patient is fully replete and the causative agent removed.

So you need to know if the cause is temporary or permanent.

[may61 in reply to fbirder]

Read somewhere that the neurological problems often appear before aneamia. Apart from the intrinsic factor what other blood tests should I ask him to do and cos starting other b12 injections next week is that goin to muck up any other bloods now .My question is now what are his reasons for giving another lot of B 12 and do you think I should be referred to heamatologist? The

[fbirder in reply to may61]

Like Foggyme says below - whether or not you have PA is a moot point - you need to be treated. Further tests will just give him an excuse to delay treatment further.

He can muck around looking for a cause later.

[Frodo in reply to fbirder]

Haha, fbirder , your posts always cheer me up. It's great to hear how doctors respond when they encounter a patient who knows what they are talking about. A bit depressing too though, if you look at the implications: someone less well informed than you would have remained fobbed off, unwell and untreated. Maybe you could hire yourself out as a chaperone for appointments...

[clivealive Forum Support]

may61 how about

"False normal B12 results and the risk of neurological damage (U.K. N.E.Q.A.S Haematics.org.uk

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

That should confuse your doctor - it does me, but then your B12 was "below" normal.

[may61]

Think my next step when I see him on Thursday should be to ask to be referred to haematology? ASK THE QUESTION is this temporary .if my bloods initially

July 7 132

4 injections

Sept 9 555

Oct 25 338

Surely that means I am not making any B12

Oct 25 I injection

If I am using 5 units a day

I'm going to be very ill at xmas

That's why he had to give me the next round of injections

Will ask on Thursday to be referred to heamatologist

Thanks

[Foggyme Administrator]

Hi May61. It really is a battle isn't it...you've done very well to get so far with your ridiculous GP.

As you know, because of your neurological symptoms, he should have you on B12 injections every other day until no further improvement, not just 6 x loading doses. A nonsense.

He's already recognised that you have neuro symptoms - but he obviously doesn't know that your B12 deficiency can cause these!

You could try printing the leaflet in the PAS library called 'sub-acute combined degeneration of the spinal cord' (or find info on the Internet, if not a member) and take this along with you when you see him on Thursday.

Ask him to confirm you do not have this as a result of your B12 deficiency - of course he won't be able to - then ask him why he is not treating you with the neurological regime, to prevent this occuring - by refusing the B12 he is leaving you open to the risk that this type of damage will be done - and become permenant! (Not saying that this is what you have, but he needs to treat you to prevent it occuring). I bet your GP doesn't know about this and it might just wake up his brain to the reality of not treating you (illness for you and liability for him (though don't talk liability - he should be able to see that for himself).

You could also point out that whether or not you have PA is a bit of a moot point - it's the B12 deficiency (possibly caused by PA) that is dangerous and which must be treated. And there are other causes of B12 deficiency. But I bet he doesn't know that either!

Love your determination and refusal to let the system beat you 😀.

Really hope that you manage to get the B12 injections you need - would be wonderful to think of you enjoying a B12 Christmas 🎁🎁💉💉.

Good luck on Thursday 👍

[may61 in reply to Foggyme]

Thankyou Will try that VERY FRUSTRATING AND SCARY when you consider what the outcome could be Got three days now to get prepared for round. 4

[Foggyme Administrator in reply to may61]

Good for you May61. Yes...it's very scary indeed...but that might just rattle him up to do something. Will be keeping my fingers crossed for you. Very good luck 😀.

[Sleepybunny in reply to Foggyme]

Like Foggyme's suggestion about raising the issue of sub acute degeneration of the spinal cord.

Sometimes it can be helpful to raise issues by letter as letters should be filed with your medical notes so are a permanent record of an issue being raised. I guess GPs write notes after a consultation but it must be hard to remember everything that is said.

Think it's great that you are so determined.....sadly can take a long time to get help, not far off 20 years in my case.