Confused anxious and looking for peace of mind.

[sallyloade]

approx. 25 years ago my dentist advised me to get tested for P.A. I had been feeling very tired and run down.The B12 count was 3picograms he said. proven beyond doubt he said after intrinsic factor test . A high b12 diet made no difference . so after loading does I had injections every three months up until 2 years ago when the nurse said you have a high b12 count . no further action. I went to doc who said it needed monitoring but he retired and I could get no one else to understand. All I got was No further action.

I went into a deep depression and almost gave up on life. recently I broke down on the phone to my daughter and she arranged me a new doctor.

they agreed it should be monitored. the b12 came back at 397 so they said no further test for a year. after a lot of persuasion and getting distraught I am allowed one in 6 months.

Not feeling happy about this so I went private 8 weeks later as I needed peace of mind. I wanted to be able to prove to the doctor I had P. A. so I binged on b12 rich food and took supplements.

The result was b12 risen to nearly 1800, intrinsic factor was negative. fbc was ok so he said.

I am now totally confused as I am so shattered all the time.

my doctor cant understand why I'm so anxious and agitated. feel depressed and miserable

thanks for any suggestions

SAlly

[wedgewood]

Just because you have lots of B12 in your blood serum,,does not mean that it is getting where it needs to be----in your cells! Also not testing positive to IF antibodies does not mean you do not have P.A. Your doctor should know this! It is all in the BMJ guidelines Your symptoms need treating with B12 injections . If your doctor will not treat you, you have to D.I.Y. You say you had the Intrinsic Factor antibody test 25 years ago Was that positive? It must have been for you to get the 3 monthly B12 injections. This means that you get B12 injections for LIFE, as there is no cure. Your doctor must read the latest guidelines ---then you should get the treatment that you need .

[sallyloade]

I didn't expect my b12 count to rise , as I though it was an absorption problem so really confused

[Sleepybunny]

Hi,

"B12 count was 3picograms he said. proven beyond doubt he said after intrinsic factor test ."

Do you mean that in the past you had a positive IFA(Intrinsic Factor Antibody) test? My understanding is that once diagnosed with PA treatment is for life.

"result was b12 risen to nearly 1800, intrinsic factor was negative"

I have read that it is possible to still have PA even if IFA test is negative. The "BCSH Cobalamin and Folate Guidelines" mention Antibody Negative PA.

PAS

Are you UK based? I would suggest contacting the PAS (Pernicious anaemia Society) soon. Lifetime membership costs £20. In some cases they can intervene on behalf of members and are a good source of info.

pernicious-anaemia-society....

01656 769 717

E-mail contact on this page pernicious-anaemia-society....

The chair of the PAS has a blog which may be of interest. there are stories on there of people who have had their injections stopped.

martynhooper.com/

Martyn Hooper has written several books about B12 deficiency and PA. I gave a copy of his latest to my GPs

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

I also found "Could It Be B12" by Sally Pacholok and JJ, Stuart helpful.

UK B12 documents

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines" I gave a copy of this to my GPs.

UK B12 treatment

patient.info/doctor/pernici...

See also page 8 of BCSH Cobalamin Guidelines.

Other UK B12 websites

b12deficiency.info/

b12d.org

Link about writing to GP if unhappy with treatment.

b12deficiency.info/b12-writ...

[sallyloade]

brain fog worse. thort that's what I was posting on.

[Marz in reply to sallyloade]

Yes this is the Pernicious Anaemia Society forum - but there is also a website which has been linked for you above in the post by sleepybunny. Just click on the links in blue and away you go

You have had some excellent advice

[sallyloade]

would the b12 count rise if I had P A

[Marz in reply to sallyloade]

.... afraid it would not.

[sallyloade]

with no injections

[sallyloade]

what else could cause similar symptoms then

[Foggyme Administrator]

Hi Sallyloade.

I'm new here so can't offer much, yet, but just wanted to say that I identify with what you say and how you feel. My B 12 injections have been stopped due to a high serum B12 level (>2000 in the range 240ug/L - 940ug/L).

What I have learnt from the people here is that if you have been diagnosed with PA, then you need treatment for life.

My understanding is that a high serum B12 level is simply an indication that treatment with B12 has taken place.

Guidelines (I think it's in the NICE guidelines) also state that once treatment with B12 has commenced, there is no need to test serum B12 levels unless looking for a low level.

I see sleepybunny has given you lots of good links to evidence that you can print and take to the surgery.

Your nurse and GP were very wrong to stop treatment and I hope that you're able to get them to re-think very quickly.

Good luck. Let us know how it goes.

[sallyloade in reply to Foggyme]

thank you been feeling very rubbishy glad someone understands

[Gambit62 Administrator]

1% of B12 is absorbed outside the ileum. This means that even if no B12 is being absorbed in the it is possible by flooding the rest of your gut with really high doses of B12 for enough to get through into the blood. It doesn't work for everyone. You would need to be taking does of around 1000-10000mcg a day orally. Doubt that the food is going to make much difference and it is probably down to supplements in high doses if your levels have gone up.

If you have a problem absorbing B12 in your ileum then that means you aren't able to store B12 in your liver to use in the future - as it won't be absorbed in the ileum as it normally would - at best you would be able to get 1% of the B12 you had stored - so it was totally wrong to take you off injections because the level in your blood was high - that was because you were receiving injections. B12 deficiency isn't about the levels in your blood it is about the levels that are getting through to your cells - low levels in blood will mean not much is getting through - but that is far from the only thing that can go wrong. BCSH guidelines do not recommend testing after treatment with injections - serum B12 tests aren't significant after you have received treatment unless they continue to show low results meaning that you definitely need more