How often do you inject?: Hi folks, I... - Pernicious Anaemi...

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How often do you inject?

AmyG6500
AmyG6500

Hi folks,

I’ve been SI since May last year and was trying to reduce the amount. Just to see if I could really. I’ve been on weekly injections of hydroxocobalmin for at least 6 months.

I’m not doing too well, I have possible Lupus (or similar rheumatic autoimmune disorder) too so it’s complicated. I’m on new meds for that and my ongoing anxiety is extra bad.

Foot pain and burning has come back and I’m shaky, walking into door frames, tummy troubles are worse and I have pica (for ice or iced water).

I’m just afraid my GP is going to have a fit about me still injecting every week. He knows I went private for B12 and then SI. I have to go and see him because I’m a mess and need his help with a benefit claim.

So, should I just SI when I feel I need it? It really can’t hurt can it? Any experiences of how often you guys need it?

It’s all very scary because I have no support that covers all the issues, they are all treated separately by different doctors. 5 psych referrals over the years, rheumatology, neurology.

Currently I’m afraid all the extra B12 could be masking something more sinister. Probably just my anxiety talking.

Thanks for any suggestions/support.

16 Replies
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Gambit62
Gambit62Administrator

you may find this rather old poll interesting

healthunlocked.com/pasoc/po...

About 40% of patients with PA go on to develop autoimmune thyroidosis - hashimotos - and symptoms overlap considerable so worth getting thyroid levels done ... and taking a look at the TUK forum

healthunlocked.com/thyroiduk

other auto-immune conditions and other vitamin and mineral deficiencies are other possibilities

If you are feeling symptoms of something else then B12 obviously isn't masking it.

AmyG6500
AmyG6500 in reply to Gambit62

Wow! That is interesting. Thanks

You cannot overdose with B12 injections .I also have PA and I self-inject weekly too and have been doing so for 3years because once every 3months was so very inadequate . I take a folic acid tablet daily as well . My feet , which were numb before I started , have improved but now just burn like mad, so this is irreversible .

Your tummy troubles can also be caused by PA . Autoimmune antibodies attack the parietal cells which produce the Intrinsic Factor and stomach acid. Lack of stomach acid causes tummy problems (gastroenterologist told me this ) Taking a probiotic has helped me no end . I used Symprove , but there are others ,including organic raw sauerkraut ( either purchased or home made ) So look up Diet for Achlorhydria . May also be helpful for you .

I’m sure that the B12 injections are not masking anything sinister .

We do know that one autoimmune condition seldom comes alone ( I have one other ) So maybe that should be explored .

I do wish you the very best .

AmyG6500
AmyG6500 in reply to wedgewood

Thanks wedgewood that’s very reassuring.

I am prescribed antacids for acid reflux. I wonder if that’s actually making the problem worse. It’s reducing the acid in my throat and nasal passages though.

Sorry to be gross, but I get a lot of watery diarrhea. The more B12 I get the less this happens.

The thing that worries me is that I never got a diagnosis of PA. The GP refused a therapeutic trial so I found a private doc to start me off and now I SI. I guess if it helps there must have been a problem. It’s not the whole issue though.

wedgewood
wedgewood in reply to AmyG6500

If you do have PA , and the low stomach acid that comes with it , then taking an an antacid ( is it a PPI?) will make the situation worse . I had reflux when I initially had PA , and the GP tried to get me to take an antacid ., which I didn’t . If you have low stomach acid , then the oesophageal sphincter doesn’t get the message to close properly , which it does if the stomach acid is high enough. The result is reflux .

I tried to get a test for stomach acid , but the NHS don’t do one . I had to tackle it mysel . Taking a probiotic and drinking a dilute solution of organic cider vinegar helped a lot . I’m freebof that problem now . Only occasionally does it start to make a come-back , and I nip it in the bud with probiotics and acid drinks ( a fellow member recommends lime juice ) Look — I don’t know if this is your problem and if doing what I suggest will help you , but for sure it won’t harm you , which is important . . Stomach acid is important in the absorbtion process of nutrients . I used a home-made test for it . First thing in the morning a small glass of water with a teaspoonful of bicarbonate of soda . Drink it and wait .You should burp within 2-3 minutes . If no burp within 5 minutes you have very low stomach acid ( hydrochloric acid) Yes it sounds crude , but it gives a good indication , and we have no other way to find out . You can google it for more precise instructions . “Home test for low stomach acid “ will bring it up . Of course there are proper medical tests , but the NHS won’t do them .

I think they are expensive . It’s too easy to prescribe PPIs and antacids which do stop acid reflux by neutralising the small amount of acid you might have , which can bring some more serious health problems . We need stomach acid to stay healthy .

I’m rambling on now -sorry ! I’ll go now and wish you the very best .

AmyG6500
AmyG6500 in reply to wedgewood

Oh wow! That IS interesting. Very interesting. The GP has had me on antacids for reflux for years! I’ll definitely look into this. Thanks so much.

AmyG6500
AmyG6500 in reply to wedgewood

My tests for Intrisic factor and gastric parietal cells were normal. But the B12 helps so much. It’s so hard to know WHAT I have.

wedgewood
wedgewood in reply to AmyG6500

You can still have PA if your Intrinsic Factor Antibodies Test was normal . You will find this information in the pinned posts . It is the most unreliable test if it’s negative . Not if it’s positive . Symptoms are the most important indications .

AmyG6500
AmyG6500 in reply to wedgewood

I’m going to try the home test. I’ve been on Zantac for ages though. I wonder if I should stop it and leave a period of time first. Hmmm, any thoughts?

My reflux was silent, no symptoms except sore throat and sinus problems. It took ages to find out it was a stomach problem.

wedgewood
wedgewood in reply to AmyG6500

I would try the bicarbonate of soda home test whilst still on Zantac . It’s supposed to stop you producing stomach acid. If you get the no -burp result , you know thats what it is doing. If you try again , after you discontinue Zantac , you will find out if you are producing stomach acid or not . If your reflux returns , you will need to be treated by someone with knowledge , if you don’t want to return to using Zantac . It’s difficult to tackle it yourself . It can be tackled by taking Betaine Hydrochloric acid capsules with pepsin( Amazon ) This will raise the stomach acid and will keep the sphincter closed . But you need professional advice with that . There’s no doubt though that low / no stomach acid (Hypochlorhydria /Achlorhydria ) prevents proper absorption of vitamins and minerals . , and you have been taking it for years .But of course you are getting plenty of B12 with injections .Deficiency of vitamin D3 +K2 can lead to various health problems . I saw a suggested diet somewhere on the Internet for Achlorhydria. Very best wishes .

AmyG6500
AmyG6500 in reply to wedgewood

Thanks so much. I’ll do that and let you know x

Cherylclaire
CherylclaireForum Support in reply to AmyG6500

I have been self-injecting every other day for nearly a year now. It stops me getting worse, which was what was happening with every other regime that NHS came up with: plummeted with 1 every 3 months, still deteriorated with 1 every month, and with 2 a week, it took about 6 months to see signs of deterioration. Even 1 every other day does not mean I am symptom-free- although some symptoms have gone (hate saying that, because you know when you say it out loud, they seem to reappear!)- sometimes it lasts longer than other times, so I think it depends what/ how much you are doing. (Occasionally, an injection seems to have no real effect, like a random duff one.) Sometimes I stop what I'm up to just to say "I couldn't have done THIS a year ago!"- which makes me very happy.

I have done the DIY "acid test": no burps from me! Used partner as control : plenty of burps. Scientific enough for me. I now drink sparkling water with plenty of fresh lime squeezed in.

Also no real cause given for problems: B12 deficiency, then functional B12 deficiency, osteoporosis of spine, consistently low levels of folate and ferritin unless continually supplemented, raised MMA, flattened villi in duodenum, and suspected IBS/ SIBO (from Lactulose Breath Test) -as still have daily diarrhoea. Usually thankfully not watery, but I can never tell what it will be like. Too much info ? Possibly- but I don't know anyone on here more likely to be interested, Amy ! Also have sore throat and sinus problems, and just thought this was more B12 probs.

I still keep records: for myself, really, since all investigations are done now. It helps me see long-term slow progress. I would say that you know what you need and what works for you as an individual. Sorry that you aren't doing so well lately and hope you can get to the cause. Could be just the acid thing, hopefully, as easy to change yourself. Best wishes.

Hi Cherylclaire sorry for the delayed reply.

The sore throat and sinus thing is really interesting. (All of it is) I have been all round the houses and specialists for that. They finally found I had acid reflux but it was assumed to be high stomach acid. I’ve been on Zantac (to REDUCE stomach acid) for years, and getting more and more ill. This conversation is the first time it’s even been suggested to me that low stomach acid could be the problem.

My anxiety is through the roof at the moment though, I don’t know if it’s the new Lupus medication (hydroxychloroquine) or just coincidence but it’s not good and the brain fog is crazy. Missed appointments and double bookings etc.

Onwards and upwards eh. I haven’t done the test yet. Need to search the kitchen for bicarb or buy some.

Cherylclaire
CherylclaireForum Support in reply to AmyG6500

Make sure it's in date, AmyG6500 - you might get a false negative!

Sorry to hear that you have Lupus too, but strangely could be somewhat of a relief to have a title for what is happening to you anyway, after all this time. The "low- stomach-acid-getting-treated-for-the-opposite-problem" problem must now be so common that it, too, deserves a name : any (printable) suggestion ?

Also sorry to hear brain fog playing up. You are going through a lot, so perhaps not all that surprising. Would be good to get some improvement, if low acidity is the problem- plenty of self-help suggestions on this forum for that I think- which might also help your anxiety to calm down. Hope so.

September's here and so I am starting back to work on two days a week instead of just the one I managed last year. It might sound a little humiliating to have my former 1-day-a-week-assistant now taking over responsibility for "my" group, but to be honest, I'm not able to slide seamlessly back into my former role. Might never happen, but all you can do is your best, isn't it ?

Hope you are still singing, even if only to yourself. x

Hello, I haven’t been on here for ages but I have finally done the bicarbonate stomach acid test. No burps. So I’m now going to reduce the Zantac gradually, protecting my throat with Gaviscon (which is a barrier rather than an antacid) and see how it goes. I’m expecting it to be difficult after 6 years on it. I’ll keep you posted. X

Cherylclaire
CherylclaireForum Support in reply to AmyG6500

Do that, AmyG6500 - same happens to me. Did you get your husband to do it too, so you can hear what "normal" sounds like ?

Apparently better 1st thing in a.m. before eating or drinking.

Told my GP about low stomach acid causing acid reflux and about this test - she thought it was all nonsense. Still, I'm willing to bet scientific curiosity got the better of her (not that she'd admit it). To me, it sounded...well, sound, really.

Like you, every time I do it : no burps. Partner: doesn't stop !!!

Good to hear from you, hope you are making progress. Slow, isn't it ?

I'm still working 2 days a week - consecutive, so tired next day but doing it ! - and still injecting every other day which (mostly) helps. Better than I was - no miracles yet though.

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