Help needed

[Dianebee]

I visited the gp yesterday due to worsening symptoms. Hoping to get more frequent jabs. He looked through my file, stated as I have negative intrinsic it's not PA and I don't need jabs. He then took my blood to 'prove' this. My levels are bound to be high due to me having injections? Surely he can't just stop my treatment. When diagnosed my b12 was 92. What do I do?

[clivealive Forum Support]

Do you know why your B12 was so low in the first place?

If nothing has changed in your lifestyle you could then compile a list of reasons why you need to have continuing injections.

[Cymraes84]

Sorry to hear your having a tough time getting the right treatment.

I'm not sure what exactly to advise, but I guess to a certain extent the GP is somewhat correct in saying that it isn't PA if your IF antibody test was negative. But that said, I don't think that a negative test result necessarily means that a person doesn't have PA either, so I think it would be seriously unjust of him to withdraw your injections on that basis, and without further investigation.

The fact that your health is deteriorating despite regular injections should really have provoked some sort of concern, so I hope that he is going to work with you and attempt to figure out what the problem is. If he seems reluctant, just keep nagging him, or maybe try a different GP at the practice who might be more willing to help you out. I have my B12 injections on a 6 weekly basis now, so sympathetic GP's do exist - don't lose hope!

There are quite a few articles and guideline on the subject too which may be worth a browse. If there is any information within them that contradict his opinion then I would print them out and bring them along with you to any future appointments as back up.

Good luck

[Gambit62 Administrator]

your GP certainly shouldn't be stopping your treatment.

Suggest you try writing to the GP copied to practice manager pointing out that

a) IFA is prone to false negatives about 50% of the time so a negative result is not conclusive evidence that you don't have PA - far from it.

b) even if you don't have PA this does not mean that you do not have an absorption problem - PA is just the most common absorption problem. Although the guidelines are far from clear treatment with B12 maintenance shots should be for life unless it can be proven that the cause was dietary or is a reversible absorption problem, such as h pylori, that has been treated and corrected.

c) B12 deficiency is a serious condition. Not treated adequately it will lead to permanent neurological damage ... and eventually to death.

d) B12 serum levels after treatment are only significant if they are low. Serum B12 says nothing about what is happening at the cell level, which is what counts. Once treatment has started then the best way of monitoring, as there aren't any good tests for what is going on at the cell level, is by symptoms.

It is possible to be B12 deficient at the cell level despite high levels in serum. This is called functional B12 deficient

If you don't get any joy from writing to your GP then I'd recommend joining the PAS and contacting them directly for support..

pernicious-anaemia-society....

[wedgewood]

If you have the symptoms you, have PA , even if your IFA test was negative . A negative result is NOT proof of not having PA. Your doctor is wrong.It is mentioned in the guidelines but I don't have the reference . But someone will send you the link I'm sure . You should print it out and take it to your doctor ! Best wishes .

[may61]

I am sat at this moment writing my letter having seen this to be recommended on other posts Will be dropping it off the day before my doctors appointment and taking someone with me to the appointment We shouldn't have to do it but having gone thru other serious illnesses with other members of my family it is the only way PUSH PUSH AND PUSH AGAIN Don't give up .be interested to know if we succeed Have considered printing the updated treatment regime and posting it out to every doc in this area cos we the lucky ones in some respect able to fight. Lots of people aren't able to Used to love a good fight when you know you are right but not with my or anyone else's health Do the best you can and lots of support for you on here take care

[Kenbowns in reply to may61]

Dianebee

Be prepared for a fight, I am in exeactly the same situation.

Last jab on 23rd September and then stopped due to serum b12 >2000......and I had to battle to get those.

He would not proceed with my treatment until he had done further bloods, naturally these were high, he said dangerously so.

I submitted a letter with all the supporting documentation and eventually and incredibly he has spoken to a Haemotologist and they want a further blood test, you can guess what the outcome will be cant you ?

I have a further appointment next Tuesday and I expect him to stubbornly stand his ground and do nothing, I also have many neurological symptoms which he should be treating.

Like you I had a neg ifa and therfore I do not have pa.....in his opinion.

I have supplemented with high strength methylcobalamin sublinguals in the meantime but these caused me a few problems, many people are just fine with them though.

I am sorry to be negative about this but I am just trying to say that it could be difficult to get the treatment you deserve, in my case I sincerely believe that my arrogant gp is fully prepared to make the same mistake a second time and allow me to walk out of his office untreated and left to my own devices, forced down the self injection route as many poor souls have been previously.

On the other hand you may get lucky and your gp could see the light, it has happened to some of our members, I sincerely hope that this will be you.

Best wishes and let us know how you get on.

[Sleepybunny]

Hi there.

Like you and Kenbowns my IFA test was negative.

"stated as I have negative intrinsic it's not PA"

Page 29 in the "BCSH Cobalamin and Folate guidelines" may be of use. It's a diagnosis flowchart that shows the recommended process UK GPs should follow with someone who is symptomatic for b12 deficiency.

Page 29 mentions when Antibody Negative PA should be diagnosed (PA where Intrinsic Factor Antibody IFA test is negative) . Has your GP seen page 29? I also found page 8 which gives details of UK b12 treatment useful. I take a copy of BCSH Cobalamin document w ith me to appts where b12 might be discussed.

There are articles on Martyn hooper's blog that mention Antibody Negative PA that perhaps you and your GP might be interested in.

ww.martynhooper.com/2016/09/10/the-calcutta-call/

martynhooper.com/2015/06/28...

I also take a copy of the summary fbirder compiled. Lots of useful quotes from mainly UK B12 documents, very handy when faced with a medic who does not have a full understanding of B12 deficiency. Link to his summary on his profile page and in third pinned post on forum.

UK b12 websites

pernicious-anaemia-society....

martynhooper.com/

b12deficiency.info/

b12d.org

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS (Pernicious Anaemia Society). This book is up to date with current UK guidelines. I gave a copy to my GPs. It also mentions Antibody Negative PA.

"Could it Be B12" by Sally Pacholok and JJ. Stuart

I am not a medic just a person who has struggled to get a diagnosis.