Confused and frustrated

Hi, I'm new to the forum and desperate for advice so please bear with me if you can! I have been feeling unwell for a couple of years with symptoms getting gradually worse, lots of blood tests over this time then finally in March my B12 levels were tested.

My level came back at 210 which I was told was borderline. 2 weeks later I had an appt for another blood test to check my levels and for Instrinsic factor antibodies. Straight after the bloods were taken at the same appt I was given my first loading dose of B12.

During my next loading dose visit a couple of days later I asked if my blood test results were back and was told yes- by B12 level was 1540 and my IFA test was positive.

I was confused how my B12 level could go from 210 to 1540 in 10 days before having any B12 but also relieved that the IFA test was positive as I felt I finally had a diagnosis of PA.

I queried the B12 result with my doctor who said the level was elevated due to my B12 injection and the IFA was a false positive!!! I told the doctor that the blood tests were not influenced by my first B12 injection as the bloods were taken before I has been given my first injection. I have had to tell her this about 5 times now as she refuses to believe me!

She even wrote to Haematology for advice and guidance but told them these inaccurate facts so of course they came back saying no further advice was needed.

Anyway, I continued with the loading doses and had 6 in total.

After about a month I started to feel a bit better, headaches lessened in frequency, less dizziness, less fatigue and I felt brighter in the mornings.

After 2 months I felt like I had fallen off of a cliff edge, my symptoms came back with a vengeance. I contacted my doctor and was told I had to wait another month for a blood test and a further injection.

I've now just had that blood test and a B12 injection.

My doctor called me to say my B12 levels were 'normal' at 440 and my IFA test was negative!

She said I have to have another blood test in 3 months and if that is 'normal I may not be given further B12 injections.

I've read on this forum that to have a B12 level of 440 after 6 loading does is very low and not normal.

I am also confused as to how my IFA has gone from positive to negative.

I've read that treatment should be symptoms led not blood test led and I'm fearing that at my next blood test if my levels are considered normal I'll be stopped treatment. But my levels may be within normal range next time as I have just been given a B12 injection.

I feel that I should be having my B12 injections increased to every 2 months but instead I'm being told they may be stopped?

I am in utter despair to be honest, I feel that my health and quality of life is being decided by someone who does not know enough about B12 deficiency and I'm feeling very exasperated!!

Any advice will be greatly appreciated, thank you.

[Nackapan]

I wrote s long reply but Web page cut off so lost????

Precise.

You are correct .

Get a copy of your positive IFA test which was correctly done before your b12 injection.

Gps and nurses do not receive adequate training.

Tge very least you shouod be getting is 2 monthly

NICE guidelines.

Gps csn prescribe off licence as do for me with 2 weekly NHS subcutaneous injections done at home.

Write to the practice Manager.

Meanwhile consider buying the treatment yoh need .

B12 injections shoul.

d raise levels quickly .

High levels need to be maintained .

Testing not necessary once on injections.

Mean nothing .

In their guidelines

Glad you got z good 'clinical response ' put that in your letter.

Hope sorted soon

[Hidden in reply to Nackapan]

Thank you so much, I will write an email to the practice manager today and state ' good clinical response ' and also NICE guidelines. 👍

[jade_s in reply to Hidden]

This page might help especially point 6 b12deficiency.info/what-to-...

Sorry you have been treated so poorly. Very strange situation with the blood tests.

My relative had a positive then a negative IFAB tests. Doctor of course said 'no PA' and she herself was doubting. After symptoms came back, she went back on regular self injection.

IF can be negative about half the time in those with PA. A third test may show positive again. At some point it doesn't really matter, because clinical symptoms are more important. Continued neuro systems require every other day injections.

[Hidden in reply to jade_s]

Thank JadeI agree, I feel I am fighting an ongoing battle to get the right treatment.

I have read that IFAB tests can come back negative 50% of the time but it seems the doctor is looking at the test results very black and white and not considering the history at all!

[jade_s in reply to Hidden]

Yes they are a bit uneducated that way!

It's why many of us resort to self injection.

And why the PAS and people like Tracey Witty fight on as well.

[Hidden in reply to jade_s]

How do you go about getting self injection, if you don't mind me asking? Thank you

[jade_s in reply to Hidden]

Not at all! In Germany, injectable B12 is sold over the counter, so most of us buy from there. Needles & syringes can be sources locally. I will send you some info in a chat message.

[Hidden in reply to jade_s]

Thanks Jade, that brilliant!

[B12life]

yes definately take things into your own hands by self I jections g.

I inject every day because I use cyanocobalamine.

Every other day with hydroxocobalamine

Read

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

It states:

- list of misconceptions about b12 deficiency

- frequent jabs are needed until symptoms subside

- serum b12 shouldn't be tested while doing jabs

- symptoms / damage can be permanent if left untreated

Your original level of ~200 IS LOW despite being in range!!!!

I was 190 and bed ridden. Now I exercise quite a bit.

The best thing was doing self injections every other day. It's been over 2 years now and I still do daily injections because I'm active.

This forum and the PAS web site has great resources and Links!

[Hidden in reply to B12life]

Thanks so much, I will definitely be looking in to it! It's also good to hear other's experiences and to get such good advice from everyone.

[palmier]

Injections beyond the loading doses are there to prevent future deficiency. It makes no sense to wait until you're deficient again before having the next injections. One positive IFA test is probably a sufficient indication that you need continued treatment with b12 to prevent future deficiency. B12 is cheap and safe so there's no good reason to stop them, but a risk to have them discontinued.

Is there any chance a different unit was used when the second test was reported? Perhaps not likely if the same lab was used both times. Always best to report the value with units and reference range, because they differ between labs and method used.

[Hidden in reply to palmier]

I'm presuming the same lab was used but I don't know to be honest. Is it possible to get a false positive test without any B12 injections? I don't see how this is possible but for my doctor to keep telling me it's because of a B12 injection when in fact i hadn't had any yet, is very frustrating.

I'd be happy if my surgery just agreed to give me injections every 2 months going forward as I don't think I can go 3 months at a time. But I'm faced with the prospect of having the injections stopped if my next serum B12 result is within normal range even though it probably will be within range as I've just had another injection!

[Gambit62 Administrator]

Hidden the IFAB test isn't very sensitive so it will give false negatives about 50% of the time. It rarely gives false positives - except when it is done too soon after an injection. The test results from the day of your injection do seem very odd.

400 may or may not be an issue when you are on injections - serum B12 is a difficult test to interpret. The average time for B12 to leave your system after an hydroxocobalamin injection is 2 months but this varies enormously between individuals - and in some it takes years. The reality is that trying to use serum B12 post injections is so difficult that the BCSH guidelines don't recommend testing after injections but continuing with treatment - where the cause would appear to be an absorption problem like PA.

Not sure it will help but you can find the BCSH standards here

onlinelibrary.wiley.com/doi...

and you could try pointing your GP to the area of the PAS website that is specifically aimed at helping medical professionals improve the diagnosis and treatment of PA (and other life-long absorption problems).

pernicious-anaemia-society....

Please note: the PAS does not actively promote self injection without medical supervision though they do recognise that many patients feel forced down this route, so we do allow the exchange of information on safe sources.

No injection is entirely without risks.

[Hidden in reply to Gambit62]

Thank you, the mote info I have rhe better so that I can hopefully fight my corner! After 2 months I definitely felt a decline in my health again and an increase in my symptoms.

I agree that a false positive is unlikely.

I have written to the practice manager and hope to have a reply this week.

If they fail to agree to give me B12 injections every 2 months or even every 3 I think I will have to press for a specialist referral ASAP.

[Orchard33 in reply to Hidden]

Yours is a very familiar story, I'm very afraid to say. My level was 96 when I was diagnosed and my IF number marginal. Had the loading doses, then every three months. Within 6 months I was almost back to square 1 but I know that improvement was possible. I knew I had to repeat the loaders but knew my GP would not do that. Went privately, had 5 shots close together, negotiated a grudging 2 monthly from GP and had another 2 monthly privately. Realised monthly not enough so made the life-changing decision to invest in SI EOD. The result has been hugely beneficial and I've taken back control of my own health and life.

[Hidden in reply to Orchard33]

Sorry to hear you've had a difficult journey, your B12 level was incredibly low!!! it seems the GP's believe one size fits all and this leaves patients suffering terribly. I'm glad you are feeling so much better, I will try and get sorted through my GP and push for 2 monthlybut if all else fails I may have to go down the SI route. I may explore getting loaders privately too. Thank you for your great info. 👍

[jaybirdxNHM in reply to Hidden]

Self injecting is the best way to go,I have been SI ing for 2yrs. Doc knows but says they can't afford nurses time to do it as often as I need!!!It's about £1 per jab incl. everything, so much much cheaper than privately.Be brave 🤞🤞.

[Hidden in reply to jaybirdxNHM]

That's very inspiring, thank you. Where do you inject? I must admit i don't like needles and it is rather painful in to the muscle.

[jaybirdxNHM in reply to Hidden]

I alternate between subcutaneous tummy area, and thighs. Right side and left side, so 4 sites. I do every other day, sometimes trying every 3rd day, but after a couple of goes usually due to more exertion, I end up back to EOD! Having more sites stops any potential inner scaring. I can't do arms, difficult position.🥴 If you live with other adults, who could help, you play " remember the site game" and have plenty more! ( My cat's useless).😿

Good Luck

[jaybirdxNHM in reply to jaybirdxNHM]

Should have said "intramuscular thighs".

[Hidden in reply to jaybirdxNHM]

Aww thank you for that! I'm sure your moggy would help if it could!😃

[Litatamon]

Helpful links, concise with medical footnotes -

stichtingb12tekort.nl/engli....

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

All the best to you..

[Hidden in reply to Litatamon]

Thank you so much!!!

[Sleepybunny]

Hi Familymum,

Here's a couple of links to get you started

How to write letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

I've just written a very detailed reply on the thread "how gh b12" about 6 threads above yours which you might find helpful.

I'm not medically trained.