My doctor is listening!

[expatkerry]

hello everyone, you might remember that I've been suffering from serious digestive problems (probably due to my PA) with no improvement on probiotics or medication. I've also developed problems with shortness of breath, extreme fatigue and depression. I was convinced that my serum blood reading of 790 was a false positive so I looked up a few cases online. Apparently intrinsic factor antibodies can interfere with the results. As I live in France I translated the three medical papers and presented them to my GI dr. She was aghast, and took a closer look at my bloodwork. My white and red blood cells are low (and have been for two years now), then she remembered another patient whose levels were normal and who ended up in a psychiatric hospital, she was treated with high doses and was fine. She decided to follow the protocol as outlined by italian doctors in a case study, and I have started loading doses, 1mg injection per day for 7 days then one per week for a month then once a month. They use cyanocobalamin here. The breathlessness has already subsided (after a week) now I'm hopeful that I'll see an improvement in my degestive issues eventually. For those of you who are struggling, take heart. It only takes one open minded professional to listen.

ps I was recieving monthly injections before but still ended up in this state. Also as my levels were considered acceptable I never recieved any loading doses at the beginning of my treatment three years ago.

[clivealive Forum Support]

Hi expatkerry that's good to read.

Was your Folate level OK?

I've been on cyanocobamalin 1mg injections for over 46 years for P.A. and I'm still "clivealive" and over 77

I wish you well.

[expatkerry in reply to clivealive]

Hi Clivealive,

yes folate level is fine.

[wedgewood]

So pleased to hear that . I’ve been having digestive problems too.(I’ve been diagnosed with PA) — PA patients have low / no stomach acid Hypochlorhydria/Achlorhydria . It’s caused by the antibodies that attack the parietal cells in the stomach which produce the Intrinsic Factor and the stomach acid , both of which are needed to break down /absorb the B12 . I’ve now started taking Doctor’s Best Betaine HCL (650mg)with pepsin and Gentian Bitters capsules with main meals . They really help me . I also take probiotics.

Wish you all the very best .

[expatkerry in reply to wedgewood]

Hi Wedgewood, sadly none of these have worked for me, I have malabsorption now and I tolerate very little. I've been told I'm suffering from malnutrition which is a bit scary.

[wedgewood in reply to expatkerry]

I’m really sorry to hear that . But I’m sure there is help for you from somewhere . It’s finding the right sort of health advisor that’s so difficult .

Conventional doctors are hopeless when it comes to B12 and Pernicious Anaemia. Glad you are getting your B12 injections .

[expatkerry in reply to wedgewood]

Thank you

[clivealive Forum Support in reply to expatkerry]

I find adding a drop of Lime Juice to a glass of water helps.

I had two thirds of my stomach removed at the age of 17 in 1959 and my acid levels have been "low" for nearly sixty years.

[Justiina in reply to expatkerry]

I get B12/B6/B1 combo injection, B1 is needed to make stomach acids and for me it improve digestion big time. Its hard to get thiamine (B1) as injection but have you tried supplementing B1?

[expatkerry in reply to Justiina]

no I haven't as I have difficulty with supplements, but this is interesting. I'll look into this. Thanks.

[Miss-guineapig]

Wonderful news indeed. I have been a bit breathless and my Dr wants an ECG, she may be on the wrong route but I'll wait and see x

[expatkerry in reply to Miss-guineapig]

Hi there, if you have PA or B12 deficiency yr doctor may well be on the wrong track. If the last ten years have taught me something it's the absolute limitations of medical knowledge. We still have so much to learn. Good luck.

[Cherylclaire Forum Support]

Glad your GP is listening - and well done for being able to convince a doctor to read three research papers ! Let us know how you do and hope between you both that you can work out not just how to get better but how to maintain that level long-term. Very good news.

[expatkerry in reply to Cherylclaire]

thanks for the support cherylclaire 😊 I'm really hopeful that this will also help me eat a little more! I'll post in a few months on my progress.

[Kettybetty]

Hi expatkerry. So good to hear about a positive outcome. I'm also in France but sadly my GP is not as understanding as yours. Is it possible to provide the links to the studies you found helpful as I would like to give copies to my Dr and see what happens?

[expatkerry in reply to Kettybetty]

ncbi.nlm.nih.gov/pmc/articl...

clinicalcases.eu/index.php/...

ncbi.nlm.nih.gov/pmc/articl...

There you go Kettybetty! good luck with your doctor!

[Kettybetty in reply to expatkerry]

Thank you expatkerry. Fingers crossed!!!

[Honey-Bear123]

Fab news. Your Doc listened and read 😊 I also had a doctor that listened to me a couple

Of months ago. After one doctor taking me off my injections for 17 months even tho diagnosed with PA 😢. I felt my digestive problems lessened a great deal but came back with avengence once off the jabs. Slowly now getting a little better with this and breathing . Hope you feel better very soon and you are able to eat a little better and your depression lessens for you.

Would you consider SI? once all your loading injections are finished. This has helped me so Much.

[expatkerry in reply to Honey-Bear123]

Hi Honey-bear123, thanks for yr reply. Yes I have already considered self injecting but for the moment I'm hoping we'll find my optimum level this way. If I feel it's not enough I reckon I'll top up myself😊. I was disappointed yesterday when I found myself once again severely breathless but it has only been a week of injections , if I understand correctly it would take a minimum two weeks for the macrocytic anemia to begin to resolve. The depression and constant stomach pain are already a lot better, I'm trying to be patient! After 10 years of this you'd at least think I'd learnt that!

[Honey-Bear123 in reply to expatkerry]

Aww hope your breathing improves. They do say it takes at least 100 days to make new blood cells so hopefully you will feel better soon. I can’t even keep up with my 80 year old dad. 😩 been self injection for 5 weeks now and I can feel the difference x

[expatkerry in reply to Honey-Bear123]

100 days! As long as That! So Much for me being patient!

[Ashweb901]

Are your white cells back up? I have a history of low RBCs that are too large, but the white cell dip was a new thing for me that showed up with my breast cancer Dx in June and persisted til crept back juuuust above normal in December. I’m being tested monthly through March.

[expatkerry]

YES! It's been one of the biggest improvements, I'm now just within the norm, much to my doctors relief! My blood pressure is also inching back to the usual level. Small improvements but significant. My gastroenterologist knows I'm self injecting as well as monthly injections and she's fine with this as she suspects I have functional b12 deficiency as well as PA.