Me again.... update, partly positive / partly negative?! Not understanding or supportive no further tests, but will 'try' another jab....

[eclilley]

Hello again from the off-piste Gloucestershire, thank you all for advice and solidarity so far...

So, heard back from my GP, who had been willing at least to take the NICE guideline and various other things like lists of symptoms, tests etc and look through to review. I feel conflicted and not sure what the best thing to do is - I may well phone PAS too.

She has said:

- she spoke to heamatologist who said they almost never see B12 patients as usually dealt with by GP, so they hadn't really anything more to add. Except that Homocysteine testing is not available locally, they don't do it. My GP said she has never seen Active/inactive B12 tested for. She didn't mentioned the TS3/4, nor others like gastrin, that I had listed with reasons, and I forgot to ask on the phone.

- said that I don't have PA (not sure why she thinks she can confirm that, I did later try to ask and said I think I do, she did admit IFA is not reliable test, but that was all).

- said because i only had a low B12 once that wasn't that low (133 on 10/8/18 - I did point out the Dec '17 it was only 190) and I'm not anaemic (ferritin was last tested in Aug =17) & the blood cell things are all in normal ranges, and because I had the 5 loading doses in Sept, and B12 is now in range (293 on 22/01/19......again I pointed out that it is the total not active/inactive and that it is only 4 months after jabs), that it's difficult because I have had what I should have and it's normal. So suggested maybe other causes of the symptoms should be considered, like a trapped nerve (ignoring ALL the myriad other symptoms!)....

- BUT, that if I feel that trying another B12 jab would help they have agreed that they could give me 2 monthly as a trial (not re-start the treatment as per the actual guidance which they didn't adhere to), stressed this is as a trial to see if it helps the pins & needles.

- BUT, she has been told there is a review of the guidelines being done (I think she said that Glos were reviewing, but it may have been National, not sure). She said she hears there is talk of switching to tablets instead of injections "which could be good" (I said I had seen others had been told similar and that there is some concern over tablet efficacy).

- So, this would mean my 'trying' 2 monthly jabs would have to be reviewed after March and I would then have to be treated as per any new guideline (all of a sudden they want to follow the guidelines, even though they didn't in Sept...?!?!).

I have made an appt for jab next Tues, as I am desperate. I told her am almost certain getting B12 will help as it had helped quite a lot after the 5.

But, will basically get one, maybe 2 if I am very lucky and get one mid-April, before it has to be reviewed again for a new guideline.

I feel like a marginal victory in that I can get a jab. hurrah! But feel despondent that there are no further tests forthcoming (esp thyroid ones), no referrals, and a basic premise that they think it is pointless. And so then the next time the symptoms come back because I have not had sufficient B12 (or anything else - they have not even mentioned folate at all), they will say "there you go, that didn't work, it's not that, you can't have any more". I also feel in a way that by accepting this 'trial' offer, I am deemed to be agreeing with them, deemed to be agreeing that they did the right treatment in the first place (which they didn't!!), and that it will muddy the water for any future blood tests as the B12 will always appear to be in 'normal range' .

Help!? Am I going mad? Should I accept the offer of trying a two-monthly, and count myself lucky?

Should I try and change GP practice over the border to Warks or Oxfds and start afresh?

I am thinking of ordering myself a blood test done by one of the online people asap, & before the B12 jab next week, to incl. active/inactive B12, TS3/TS4, Vit D & standard stuff. I have not been supplementing with anything so it would show if B12 has dropped further since Jan and I could put that to the Doc??? As well as some additional info that has not been tested for to date.

Thank you, and hope this may help others. Gloucestershire especially!!!

[fbirder]

I really can't see somebody with such a blinkered attitude showing much interest at all in independent test results. Her attitude will almost certainly be that it's not reliable. Even if it were done by St Thomas'.

I would join the PAS and give them a ring. They might be interested in calling the doc and asking her about the new guidelines and switching to tablets.

[eclilley in reply to fbirder]

Thanks. No, but I am interested to get the tests for my own info. Maybe give me a reason to bang on the table for the GP to do the ones they haven't...?

Anyway, will ring PAS. I joined last week so may as well get some help now.

[eclilley in reply to fbirder]

PAS have said go to Dr with printout of their Advice for Healthcare Professionals and say that PAS advised to. Main thing is to get the PA diagnosis.

I have taken her so many printouts already, which is where her concession of 2-monthly trial has come from, I can't see me getting anywhere. They said i can then go back and get advice on SI (I don't want to do that just yet!). Also said def have the jab that has been offered for health.

But I am going to put it all in writing with the PAS document and say I am unhappy and want proper diagnosis, ask why didn't get given even the guideline treatment, if she thinks I don't have PA why was the B12 low.....

Maybe change Dr if I have the energy to do so

[fbirder in reply to eclilley]

Have you tried this document? hey.nhs.uk/wp/wp-content/up...

It's the guidelines for treatment of people suspected of having a B12 deficiency. The main point is that they treat if there's a strong suspicion of a deficiency based on the symptoms. Then they attempt to treat it with a series of injections. If the injections relieve the symptoms then they carry on the treatment forever.

If Hull and East Yorkshire can do it properly I don't see why others cannot.

[eclilley in reply to fbirder]

I am going to write, so I will include this as well, thanks. I am not very optimistic as I already gave her the printed NICE treatment protocol, which evidently they can't follow, and can't admit that they didn't 😣

I have ordered blood tests online as they were 50% off at the mo. Just interesting if they shed any more light - will include active & inactive B12 and TS3/TS4 which GP won't do.

[clairemallen123 in reply to fbirder]

Hi fbirder and eclilley

Who at PAS do we contact it sounds as if those of us in Gloucestershire need some help and authority to stop a maverick local change in guidelines

Eclilley your experience is the same as mine my GP told me they were about to change the guidelines and this would mean stopping injections all together

I also have never had a cause for my deficiency

A negative intrinsic factor was enough for the GP to dismiss there being a problem and basically tell me it’s all in my head

Despite a loading dose therapeutic trial significantly making a difference

I’m afraid at the time I couldn’t face the fight so went ‘off piste ‘

Dispite being in total control myself I am keen to challenge policy on the grounds a) it’s wrong b) not everyone feels comfortable to do it themselves c) a constant worry all I s good for me until I can’t either do it myself or access the b12

I feel so lucky I am able to manage my own b12

3 years of experience means I am so in tune with my body and it’s needs and am able to respond to this with a b12 injection when ever it’s needed This means to me an injection every 6 weeks occasionally adjusting this frequency depending on activity social drinking etc

If thing go awry this forum’s support is incredible with reassurance and expert advice

I am 60 in April and live the active busy and social life I lived in my 30s and 40s I don’t remember the first 7 years of my 50s it was just a blur of exhaustion and anxiety and GP visits There is no way I could go back to that by putting my health in the hands of the medical profession who appear incapable of doing anything other than blindly follow written instructions that assume on size fits all

[fbirder in reply to clairemallen123]

The person to contact at PAS is - whoever happens to be near the telephone at the time. It's not an organisation overburdened by manpower. The good news is that this means that it's likely to be Martyn Hooper who tries to help you (not initially, as he spends a lot of time outside the office talking to people about PA).

I'm sure all you'll need to do is mention Gloucestershire and they'll already know just about everything you're going to say.

[clairemallen123 in reply to fbirder]

Thanks I’ll call as well and follow up with an email

[eclilley in reply to clairemallen123]

Just a v short reply for mow. I phoned PAS on Thurs lunchtime. It got routed through to Martyn as it was after helpline hours (I didnt realise). I have to be honest and say I didn't feel enormously positive from it. I did say Glos and that they dont even folliw tge NICE guideline and were apparently looking at a new guideline involving tablets, but he just repeated that there arent any guidelines and i must print the pas advice for health professionals go back to my GP and ask for a diagnosis. Which i had pretty much just done.

I am going to write to my GP and ask for diagnosis, or why they felt certain they could state that i 'do not have PA, additional tests like full thyroid, and say i am not happy with treatment to date. But i am having the 'try it if you think it might help' jab next week. Then see what next.

Maybe if all of us in Glos having the Glos problems sent an email to PAS so tgey can see it's an issue and decide if/how they approach them ?

[Cherylclaire Forum Support]

You are right, eclilley - you do deserve a reason for low B12- whatever the range might be in Gloucestershire, you were surely below it at 133 ng/L.

I was treated after being tested at 1 ng/L below the range in my area. Below range is below range.

Since we can only take on B12 as an extrinsic factor (through eating), either we are not eating enough and over time have exhausted our reserves, or there is a bigger problem - usually Pernicious Anaemia. In which case, the injections are for life because obtaining B12 as an extrinsic factor won't be possible....

I have seen haematologists (who took a lot of blood tests including active B12) , gastroenterologists, a neurologist, a dietitian, and an Inherited Metabolic Diseases consultant, I've had a brain MRI scan and electric nerve testing, 2 colonoscopies and a gastroscopy, and a hydrogen breath test for Small Intestine bacterial Overgrowth (SIBO). I still don't have answers.

My GP has worked hard to find answers for me. She diagnosed me as having B12 deficiency, then functional B12 deficiency- because although after starting maintenance (every 3 months) injections, I had serum B12 readings of >2000ng/L, I was still very symptomatic and my MMA ( Methylmalonic Acid ) was raised. This test is a blood test that is not usually available locally, but she knew what she wanted testing and why, and she got it done.

In laywoman's terms, MMA joins with B12 at a certain stage, so if there is MMA hanging around in the blood, it could be because there is insufficient B12 to join up with it. There are other reasons, including the aforementioned SIBO, and renal problems should be ruled out. MMA normally rights itself after B12 injections, but mine did not. MMA would not be routinely tested for before injections given.

I once believed that the point of the loading injections was to quickly rectify the lack of B12, then initiation of a maintenance regime to ensure that level stays constant and safely within range. It seems that at the point when the B12 deficiency is first discovered, very little information is then given to the patient about what this might mean in terms of treatment, beyond seeing the nurse to organise a set of injections. Very little information is requested from the patient either, in terms of what symptoms may be experienced, or whether the patient understands that there may be a link to, and between, complaints dating back years.

How is anyone expected to better understand and treat this deficiency, be they specialist, GP, nurse or patient, unless communication at this early stage is established ?

No you are not going mad.

Your GP has not given you a reason for being B12 deficient. Unless you have given her a list of everything you eat *, she cannot say with any certainty that it is a dietary deficiency. And if it's not, what is the cause ? What will prevent it from recurring if injections are stopped?

*No-one, not even the dietitian, has ever asked me for that and I find it surprising.