Help please - PA diagnosis

[helsbells80]

Can anyone please help?

So I've just come back from my GP appointment regarding b12 deficiency, and even though I highlighted my PA diagnosis in 2001, and the fact I was taken off b12 injections and monitored using the b12 serum test in 2005, he still thinks that this was a sensible cause of action as my b12 levels were coming in normal!!

I explained the pattern in my health deteriorating after the b12 injections were stopped, and how I've been diagnosed with CFS & Fibromyalgia from starting with a chronic illness in 2011.

The GP still has 100% faith that the b12 serum test is accurate and therefore I cannot be b12 deficient!!

It's so infuriating that gps are soooo closed minded about the accuracy of the b12 serum test!! It doesnt help that my b12 serum level is 500 now. 

I currently have unexplained inflammation and severe symptoms that are supposedly down to my CFS/Fibro condition, which leads me to have a very poor quality of life. But I am very concerned that this has been misdiagnosed, and is actually due to my PA diagnosis in 2001 (which has been ignored) and could be causing irreversible damage!!

Surely I thought they would take note of my PA diagnosis in 2001!!!

I have paid privately for additional tests (MMA, Active b12, Homocysteine) and waiting for these results, but in the meantime I have booked an appointmnet with another GP to see if they will agree to start b12 injections again

Does anyone know where I can source information that proves b12 injections should never be stopped with a diagnosis of Pernicious Anaemia? I want to print off as much info as possible and take it with me to my GP appointment on Thursday.

many thanks for all your help

xxx

[jillc39]

just hang in there...... I cant help, only to say you are one more person having to fight for a b12 injection!

[fbirder]

Aargh! It's so annoying to hear the same old thing again and again. If you have PA then you will need regular injections for the rest of your life.

I've put together a summary of the major points I needed when I went to see a haematologist with references to some important articles - frankhollis.com/temp/Summar... - I recommend printing my summary and the articles linked on the first page.

There's a link to an item that says the B12 test can give falsely high results in patients with high levels of anti-IF antibodies. Which is everybody with PA.

Next I would buy Martyn Hooper's book, -amazon.co.uk/What-About-Per...  

Martyn runs the Pernicious Anaemia Society - pernicious-anaemia-society.... - and it would be a good idea to join them and phone them for advice.

[Hidden in reply to fbirder]

Great summary! Definitely taking that with me along with the articles. Thank you

[Hidden]

Hi, I'm in the middle of trying to get my gp to give injections and Marz on this site has directed me to lots of goos information. Look through her posts. There are guidelines on The pernicious anemia society wwebsite. Have you checked out the b12 awareness site and b12.org too? Sorry, I've tried to put the web addresses on but they won't turn blue. Marzs posts always work! The British committee on standards in haemotology have guidelines too. Good luck

[Singoutloud in reply to Hidden]

The links normally turn blue after you have submitted the reply ☺

[fbirder in reply to Singoutloud]

That's how it should work, however the HealthUnlocked software is a bit flaky in this regard. It refuses to turn urls into hyperlinks under certain circumstances - editing a post and cut 'n' pasting links seems to make it go derp.

[clivealive Forum Support]

P.A. is for life, not just for Christmas helsbells80 

I wish you well in your fight to get what is your right.

[Sleepybunny]

Hi,

I'm shocked that with a confirmed diagnosis of PA your injections were stopped.

"even though I highlighted my PA diagnosis in 2001, and the fact I was taken off b12 injections"

"Does anyone know where I can source information that proves b12 injections should never be stopped with a diagnosis of Pernicious Anaemia? "

I'd urge you to contact the PAS (pernicious Anaemia society) wihtout delay.

pernicious-anaemia-society....

01656 769 717

Office open every day from 8am till 2pm except Sundays. If you join you can access details of local support groups.

Lifetime membership is £20. In some cases they can intervene on members behalf. The chairman Martyn Hooper has experience of people who have had their injections stopped. I think some of the case histories are on his blog.

martynhooper.com/

Link for those who think they are not receiving correct treatment for PA/B12 deficiency

b12deficiency.info/b12-writ...

As far as I know those diagnosed with PA should receive injections for life. See Management section in this link.

patient.info/doctor/pernici...

I found page 29 in the "BCSH Cobalamina nd folate Guidelines" useful. its a diagnosis and treatment flowchart. i gave a copy of teh BCSH Cobalamin Guidelines to my GPs along with a copy of Martyn Hooper's latest book.

Another useful book

Could it be B12?: An Epidemic of Misdiagnoses by sally Pacholok and Jj stuart

UK B12 documents

Recent documents make it clear that people symptomatic for B12 deficiency should be treated even if b12 levels are normal range.

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Above has interesting summary points.

Google "BCSH Cobalamin and Folate Guidelines"

I have writtem some very detailed posts in past few months. if you search for them there may be some useful info.

[Sleepybunny]

Hi again,

If you have no joy with the GPs then this charity can provide free second opinions on diagnosis and treatment.

HDA Patient Care Trust

hdapatientcaretrust.com/

020 7935 8366

HBA Online Contact form

hdapatientcaretrust.com/con...