5 in one day

[Sleepybunny]

Hi,

A post on Martyn Hooper's blog caught my eye. In one day he had 5 people contact him who had had a diagnosis of PA in teh past but had had their injections stopped.

martynhooper.com/2016/04/24...

[clivealive Forum Support]

Absolutely incredible and ludicrous.  What's wrong with these doctors?  Are they all b12 deficient that they can't think straight (fog days) or simply mentally deficient?

Thank goodness for Martyn Hooper

[Sleepybunny]

Hi Clivealive,

It seems so sad to me that  a lot of us go through hell trying to get a diagnosis and then potentially face having to fight to get the treatment they are entitled to.

I don't understand why some doctors think it's okay to take a PA patient's B12 away. I can't imagine them taking a diabetic's insulin away.

I suppose it's probably a lack of understanding of PA, a lack of training or lack of availability of up to date guidelines.

[Margo in reply to Sleepybunny]

Or doctor's don't want to know, because there is more of a profit to be made keeping people ill and guiding them to other medications to keep topping up Big Pharma' profits.

[fbirder in reply to Margo]

I'm not sure that the doctors actually profit from such practices. Just how does sending patients away with a prescription for a generic antidepressant bring them any more money?

Because Big Pharma don't actually earn any money when that happens. Even if they did, I don't think the money would find its way into the doctor's pockets.

[sweetnessandlight]

The same thing is happening on the b12d Facebook page. There seems to be an increase in retesting of b12 levels after injections have begun resulting in treatment being withdrawn or interval between jabs extended. This is clearly against current guidelines and instructions from the labs. It isn't the guidelines that are wrong, necessarily but that gps just don't follow them.

[Hidden]

I was diagnosed PA in 2005 I was treated well and believed I would recover, I was a very fit 56 year old. We have moved house twice over the past eleven years but for 7-8 of those years I was at my present surgery. When I first saw my doctor I told her I was feeling exhausted and felt I needed my injections earlier, I had taken in a list of symptoms, she said that was fine and I was having them every two months up until last year when out of the blue we got a new doctor and he said he had nothing in my records of being B12d so my injections were stopped...Then the doctor said he would do further tests as I was in a mess neurologically, I wasn't surprised when IF & Parecial antibody tests came back negative after all I had been treated for PA for ten years!! I have seen both of the senior doctors and taken all the paperwork but they won't budge, however I have been referred to a neurologist but it could be well over 20 weeks waiting period. I was self injecting but have now stopped, my last injection was early March. I feel exhausted, in dreadful pain and yet I can't sleep well at all. What a horrible way to treat people who have already been diagnosed, I dread to think what I will feel like by June, my hair is already coming out. I just hope the neurologist is smarter than my doctor on the subject of PA....

[Sleepybunny in reply to Hidden]

Hi,

"I wasn't surprised when IF & Parecial antibody tests came back negative"

Apologies if I have mentioned this to you before but the "BCSH Cobalamin and Folate Guidelines" mention Antibody Negative Pernicious Anaemia on page 29 and elsewhere in the document. Googling "Antibody Negative Pernicious Anaemia" threw up some interesting links.

Has your GP read the BCSH Cobalamin guidelines? i gave a copy to my GPs.

The PAS may be able to tell you more about Antibody Negative PA. Lifetime membership costs £20. If you are UK based there may be a PAS support group near to you...PAS will be able to tell you more. I think Martyn would be interested in hearing your story especially as in the article I gave a link to in the first post is about people having injections stopped.

pernicious-anaemia-society.... 01656 769 717

Martyn Hooper, I think mentions Antibody negative PA in his latest book. I gave a copy of the book to my GPs.

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

This blog post on Martyn's blog mentions that people can have PA with an IFA test that is negative in 3rd paragraph.

martynhooper.com/2015/01/01...

[Hidden]

I did speak to Martyn and he said to talk to the senior doctors to give then a last chance to reinstate my b12 injections, that's what I did taking everything guideline wise I could find, there are two senior partners and I saw them both, the first said he had found my history and he was sure it was something other that PA and he sent me for a nerve conduction test, when I got to the place weeks later I was told they stopped doing the tests there over a year earlier!! The doctor there said it all sounded like PA and generously booked me an MRI to rule out muscular skeletal problems. The MRI was clear but he told me he had asked my family doctor to give me some amytriptoline for the nerve pain and also advised him to send me to see a neurologist. That's the only reason I am going to see one. Meanwhile I have had a rectal prolapse so I have to see another surgeon on 11th May so with all this going on I didn't feel I could challenge the doctors or get into a fight with the surgery. I slept 12 hours last night after being awake for 27 hours straight!! I've had one rectal prolapse repaired a couple of years ago so this is going to be a bigger operation than that one, I just need to face one thing at once and get through as best I can so I didn't get back to Martyn.

[Sleepybunny in reply to Hidden]

Sorry to hear that you have so much to cope with.

Nitrous Oxide

I don't know what type of anaesthetics will be used but thought I'd mention that nitrous oxide which is sometimes used can cause problems for people who have B12 deficiency. See Links below.

gov.uk/drug-safety-update/n...

[Hidden]

Thanks Sleepybunny I will mention my PA when I see the consultant and its connection with B12d. Many thanks for your concern, this site is so amazingly helpful and I have learned so much.....if only I could remember it 🤔 Keep well x