'18 Things I bet you never knew about B12 deficiency....."a very lonely and secret illness"

[Polaris]

Sorry about the language but a very interesting link :

medium.com/@martinecotton/1...

[wedgewood]

Thank you for forwarding that article . Should be compulsory reading for doctors .

[Polaris in reply to wedgewood]

Agree absolutely wedgewood. Oh for a Dr Liz and being able to pop into the chemist for phials of B12 🤗

[JanD236]

That’s really useful, thanks for posting. Exhaustion aside, my main symptoms of PA are gastrointestinal issues and as I had both IF and GPC antibodies this provides an explanation.

[Lisanoodles in reply to JanD236]

Hi Jan, could you give me perhaps some further information on what the gastrointestinal symptoms are of PA??

[JanD236 in reply to Lisanoodles]

My symptoms have been feeling over full after even a light meal to the extent my stomach would hurt, bloating (so that I’d need to go up a full dress size) and constipation. This led me to lose a few pounds before diagnosis as I wasn’t eating as much.

I still have these symptoms but mostly to a lesser extent apart from the occasional flare up. I think alcohol (even though I drink very little nowadays) and spicy food cause flare ups but other non identified things do to.

I use betaine HCL with pepsin with meals, good quality probiotics on and off and I’m careful with my diet. In other words I mostly avoid large meals, alcohol and spicy food. I also favour eggs over meat which seems to agree with me better and I eat lots of veg for the folate, potassium and prebiotic effect.

[Lisanoodles in reply to JanD236]

Thank you so much, I am very new to this and am trying to gather as much information as I can. I wish you well with your PA management

[Polaris in reply to Lisanoodles]

Over twenty years ago, having constant gastritis, IBS, reflux, gall bladder symptoms, etc. I was told by GP, "nobody gets ulcers any more - you just need Zantac". Later down the line, after a particularly acute and painful bout of gastritis, I paid for a private endoscopy. High H/pylori was found and treated with high dose antibiotics but this did not alleviate the digestive symptoms and H/pylori eventually returned.

Looking back, that was the beginning of the downward slope to Hashimoto's and eventually PA/B12 def.

Personally, I've since found the most effective relief from painful digestive symptoms has been to avoid gluten and take daily spoonfuls of Biona organic sauerkraut (best probiotic I'd tried). Making your own sauerkraut is probably even more effective and garlic could help keep H/pylori at bay.

[martinec in reply to Polaris]

Polaris and Lisanoodles taking regular HCL Betaine with each meal will create an acidic environment in your stomach which should, theoretically kill off the H. Pylori which thrives in a low PH acid enviroment.

[Polaris in reply to martinec]

Thank you Martinec

[JGBH]

Many thanks for this article. Very useful to use when seeing GPs or even gastroentrologists.

[Ccupcakes]

Thank you for this Polaris, it explain s such a lot! Am in the middle of a 'crash ' of epic proportions that my doc wants to treat with folic acid at 5mg per day for three months but no increase in hydroxy.

This article , in full , will be landing on her desk with a thud and a request that she find me a new gastrologist who is perhaps young enough not to remember dragons roaming the earth!

[martinec in reply to Ccupcakes]

Hi Ccupcakes - I wrote this article, glad it has helped, and sorry to hear you're in a crash, mine is finally starting to settle a little, thank goodness. My article links to heaps of supporting documentation and research reports but you doc won't be able to see that content, you might need to dig around in a few of those links and print out some of them for your doc as well. Good luck, I hope the healing comes sooner than later!

[Ccupcakes in reply to martinec]

Thanks so much martinec, I've printed some of it off, my GP is thankfully very good, she ignored the advice of the Gastro and continues with B12, interestingly I've just had an appt. With a physiotherapist who is doing her MA and using metabolism and it's impact on musculoskeletal systems as part of it, she reinforced some of this and was interested to read your article so I've passed it on, I think I'm lucky, I have a good team around me, I know some don't😢. The folic acid is beginning to take effect and I have B12 ink (hydroxy) today and every week for next six weeks which will sort it I think, then back to every two months which is my norm.

Glad you are feeling a little better, it's nice not to feel like a wilting Tulip isn't it!

C.c. xx

[martinec in reply to Ccupcakes]

That Physio sounds interesting!

Yep, feeling better but of course still have bad days. Fortunately the good days are outnumbering the bad days. Hope you still feeling better soon too! x

[hendry]

Excellent article. Tells it how it is for many of us. Yet still hopeful

[CatrionaNason]

Bloody marvellous!

[Jilly5]

Thank you for sharing........I can so relate to this 🙃

[Cherylclaire Forum Support]

Circumstances change appropriateness of language used, don't you find ?

[martinec in reply to Cherylclaire]

I agree wholeheartedly

[Polaris in reply to martinec]

Thank you so very much for writing and compiling all the research, etc. for this article Martine 🤗 It finally explained and convinced a member of my family when no amount of other research did!

The afterthought about language was added in view of the rules of the forum..... God knows, I've used a few choice words in dealing with this complex disease, not to mention wanting to punch the GP who refused to bring my sister's Injection forward and prescribed antipsychotics, ignoring all other physical symptoms.......

Very warm wishes to you and all members of this and other forums in the struggle for better treatment.

[martinec in reply to Polaris]

Very happy to hear about the change of heart from the reluctant family member. I still have an uncle who rolls his eyes everytime I mention it - I sent him a link to the article and when I rang their place over the weekend, he let his wife answer the phone and didn't talk to me. Heading over there next weekend, hopefully he's read it by now and hopefully also had a change of heart.

[Cherylclaire Forum Support]

I don't know why it took me completely by surprise that I have been so very symptomatic since my mum died on 6th October. I have temporarily upped my injections from 1 every other day to 1 every day without seeing any real difference. Today, I'm in the library working on my speech as her funeral is on Monday. I have now accepted that you cannot always control or keep symptoms at bay, and have my partner and sisters to help me get through this.

Sadly, my mum would have been the one that read through this research with me, and discussed it with much interest. I am one of the B12 deficient people that has no "concrete Pernicious Anaemia diagnosis", so still in limbo.

Inherited Metabolics Diseases consultant's secretary rang today to book me in for an appointment to discuss findings with me for next May (2019)..... perhaps another piece of the puzzle will present itself then. I hope so.

[martinec in reply to Cherylclaire]

Fingers crossed! x