Successful appointment

[christina1952]

Hi all - I've been writing on here about my husband for some time, most recently to say that after being diagnosed with low B12 last year after suffering horrible symptoms, feeling so much better after his injections, but her then doing a blood test and saying all was fine, she withdrew his treatment and said he was better, leaving both of us almost in despair.

He had his last jab in June and has gone downhill rapidly after around 2 months.

I made an appointment with his doctor but wrote to her first to save time at appointment. I told her all his symptoms, and without seeming to criticize her, simply asked why he would ever have become deficient in the first place, why she had given the jabs, and if it was not PA it must be something else making him so ill, and that I had made an appointment to see her as I was so worried. But I did slip in that I knew others who had it and I understood that the treatment must be for life. My husband came with me in the end which surprised me so I know he must have felt really crap. He said it was a bit like his Mum coming with him but he came anyway. As I went in she said that she had read my letter.

She could not have been more helpful. I also put in the letter that 3 of his siblings have had cancer all involving the digestive tract and all at within 3 years of each other as I had been secretly worrying about this as well.

She said that she would immediately re-start the injections and that he could have them for life, she is to make an appointment with a gastro surgeon due his family history. I had not mentioned this to my husband before as did not want to add to his worry needlessly. She is also helping him with his depression and anxiety but I'm hoping he won't have to go down that route if he gets his jabs as I'm pretty sure all is connected. She wants to see him again in a month. She did say that his anti paretial? test had come back as normal. This is the one thing that confuses me, does that mean he does not have PA and then I start worrying he has something else. He is due to have his jab this morning, he is at rock bottom, this is just not him and is horrible for him and dreadful for me to see. It is affecting his work and his whole life and he feels he's letting me down. All I want is to see him his happy self. The difference when he had the jabs was pretty dramatic, but he definitely goes downhill after about 2 months. I feel like I'm obsessing about B12 all the time, but that's how it makes you. I feel for anyone who is not getting this simple life changing treatment after seeing the affects first hand. It's a nasty thing and there's no excuse for leaving people in such misery.

[Foggyme Administrator]

Hi Christina1952. I'm really pleased that your husband is finally getting B12 treatment and that your GP is now trying to help him.

The two 'standard' tests for pernicious anaemia are anti-IF and parietal cell antibodies (PCA). Both are very unreliable and are only accurate about 50% of the time.

This means that if he tests negative, he could still have PA (antibody negative PA).

Martyn Hooper the chair of the PAS tested negative twice and was only finally diagnosed during the third round of testing.

Your GP should not use the negative result as a reason to stop B12 treatment. The treatment for PA and B12 deficiency is the same: B12 injections 😀.

It's hard work fighting GP's, especially for someone else, so very well done for,persevering.

Hope your GP continues in the current vein and please shout up,if you need anymore support.

Take care both x

[christina1952]

Many thanks!!!

[fbirder]

Good news about the gastroenterologist appointment. They can perform a gastroscopy to check out the stomach. They can look for signs of gastric atrophy (which would cause PA) and for any possible tumours.

Those of us with gastric atrophy are more prone to having Neuroendocrine Tumours (NETs aka gastric carcinoids) so it's worth having the stomach checked out. Even if they are found (and they are pretty rare) they're nearly always fairly harmless little beasties and nothing to worry about. The treatment for mine is to have a gastroscopy once a year (yesterday, as it happens) just to make sure they're behaving themselves.

[christina1952]

Many thanks for your reply, I had heard there may be an increased risk but did not want to put any more on his plate until he was feeling better. The doctor did ask why he had not mentioned before but it had not even crossed his mind. I'm still a bit confused about the bit where she said about the parietal cell antibodies showing negative. We know that he had low B12 and there was something showed up with his red blood cells from the first blood test and that's why he needed the injections in the first place. I know I keep on about it as I find the whole thing hard to understand, but I think that some with PA will still show negative for the antibodies. Am I right? Thank you all so much for your help and advice

[Gambit62 Administrator in reply to christina1952]

as Foggyme says the tests for IFA and PCA aren't very accurate.

With PCA I think it can go both ways - false negatives and false positives - probably 50% of the time but I'm not sure.

With IFA it gives false negatives about 50% of the time - so if get a negative result then it could be because you don't have PA or it could be a false negative, which means that a negative is a long way from being conclusive evidence that you don't have PA. It could just be a quirk of the test.

I believe there are some circumstances in which it can produce a false positive but they are pretty rare so if you get a positive that is going to be good evidence that you do have PA.

[ndodge]

Hi christina1952,

Congrats for doing a great job advocating for your husband! He's lucky to have courageous partner such as yourself to go to bat for him. And your efforts payed off! Well done!

Don't worry about the negative IF test. It didn't mean he doesn't have PA.

Can you make sure that it is in his files that he needs treatment for life and also get a hard copy of that directive from his doc? As my dad used to say, expect the best but prepare for the worst!

Again, glad to hear the good news!

[christina1952]

Many thanks ndodge - both relieved and hoping to see an improvement in next few days. I tried a psychological approach in letter first by asking for her expert help to get him better as did not want to wind her up on first attempt. She could not have been more helpful, this, after my husband telling her how low and acutely anxious, foggy, forgetful and miserable he was feeling in his previous appointment, and her offering no help at all apart from to withdraw his treatment saying it must be "something else". Seemed to work and so relieved! Will wait now to see an big improvement (Fingers crossed)

[ndodge in reply to christina1952]

Yes, lots of collective fingers crossed!!

[Martin_N]

Hi Christina, am so sorry to hear this. What we're his original nasty symptoms?

[christina1952]

Hi Martin - his are mostly extreme forgetfulness, loss of confidence, panic attacks and awful anxiety along with very low mood as well as numbness and pins and needles in his hands.

This is just not him, in fact he's the opposite and he started to go downhill over around 3 years. When he was diagnosed with B12 deficiency everything sort of fell into place and the difference was quite dramatic.

My son has CD, and ended up having most of his small bowel removed last year. The good news is that he is better now than he has been for many years, both physically and mentally as it took so long to get diagnosed. While he could not absorb any nutrients due to the CD, apart from the pain, the decline in his mental health was terrible but once he received his food by parental into his bloodstream that side of things improved very quickly, and his remaining bowel can now absorb, but he has regular check ups and blood tests to be sure. If you are worried, you must make sure you have your blood tested to make sure you are not low in B12 or anything else if you have CD especially.

I hope you are keeping well, CD is one of the worst illnesses, I feared for my son last year but he is living his life to the full now, pain free and happy.