Pernicious Anaemia Society
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Anyone please help me

Is this ever going to get better I'm losing hope . I felt awful the week before my b12 injection which was last week . Very down and exhausted . It wrote a post re the way I was feeling . I had my injection 10 days ago and ha e felt no better since . In fact worse . I feel run down actually . I am more exhausted than I was and have a painful mouth ulcer and cold sore now today . I feel floaty and weak and anxious and depressed and very scared that the injection that gave me a glimpse of the former me has stopped working .

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Hi Andypandy30 It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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Thank u Clive ! Fighting a losing battle with this gp who has no clue re individual patients deficiencies am trying x

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I love your analogies Clive ! They alone would cheer me up 😁

I’ve got PA, both I F and Parietal cells positive for Antibodies.

Injections now once a week, folate ok, so far so good 👍

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How did you get the injections once a week Susan and also did your surgery give you the blood test

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The only thing that helped me after diagnosis with PA ( which I had to pay for privately , as my GP said that a B12 reading of 150 was normal ) was self-injection . 3 monthly injections were useless . I assume that you have had loading doses and are on the ‘3 monthly fits all ‘ regime ? Take your health in your own hands and self-inject ,and take clivealive advice re B9. Folic acid , Folate . By experimenting you will find out how often you need to inject to keep well . Do not give up hope . If you have PA . a probiotic will help your gut ( PA patients have low/no stomach acid which upsets the stomach flora ). I wish you all the very best .

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I'm confused about the folic acid / folate what brand works best please and also probiotic thank u wedge wood x

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Also was refused the blood test ! Will do the pa test . I want to get some normality not this even losing ability to make decisions I'm desperate x

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Folate is vitamin B9 as it is found in green leafy vegetables cabbage , spinach . Sprouts , broccoli , peas . If manufactured it is called folic acid and you can buy them from health food shops and on Amazon . I try to take my B9 in vegetable form as the vegs have many other benefits . If I think I haven’t been eating enough of the high folate vegs , I take a tablet of folic acid of 400 mcg strength /, They are quite cheap . As I have B12 deficiency because of PA ,the low stomach acid gives me gut problems which are helped by probiotics - the cheapest being homemade sauerkraut .

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I found the 'cold sore' at the corner of my mouth came back in the middle of the injection period Andypandy30 so rang the surgery to see if another injection was in order and was told it would be a folate problem so issued a script for 5mg folic acid tablets, 1xday for a month. 'Cold sore' disappeared, painful mouth wasn't, tinnitus gone (almost). When the 'cold sore' came back weeks later I bought a box of daily maintenance dose 400microgram tablets from Tesco, £1 for 90, and took those with the same result. For such a tiny investment it could be worth a try.

After doing this for a while I had an annual blood test just before Christmas and my Folate level was up to about 2/3 of maximum so GP suggested stopping, which I did: 'cold sore' problem came back last week so daily maintenance pill has been popped in ever since and guess what? 'cold sore' problem gone.

There is a cautionary tale which has to come in here. You could have the simple one but I hope this slightly longer one might give you a bit of a smile, you sound as if you need one.

I heard a reading of some of Mark Twain's writing on the radio many years ago of a few of his observations about life. He was telling of how he went to see his doctor about feeling tired and listless all the time, having no energy and no enthusiasm for life. His doctor prescribed he take a quart of whisky every day for 3 months and see how he felt then. He did as he was advised and felt much better immediately. He was then, sometime later, told by a good friend that the friend was having the same problem and after being told Mr Twain's cure the friend would give it a go. Just a couple of weeks later the sad news came that the friend had died. It just goes to show, Mark said, that one man's medicine is another man's poison.

The other observation I heard that day was his attitude to exercise and he said he couldn't see how any benefit could be derived from doing something which made him feel tired! I have taken this observation to heart and can say with confidence it has been fine for me and now in my 74th year intend to carry on with it, mind you I would point to the tale of the whisky. (Mine is either the Grouse or single malt, preferably single cask.)

It will be all right in the end Andypandy30 and if it isn't then it isn't yet the end.

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Thank you so much fir your reply and you did make me smile . Very thoughtful of you . Ok so the bloods I got taken last week i cannot seem to get from the doctor without an appointment but I'm feeling too unwell to go . Probably a good thing as I'm very annoyed and would probably say a lot more than what I should . So do u suggest starting on folic acid just to see if it helps x

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Andypandy30 I wouldn't dream of suggesting you begin taking the daily dose of Folic acid pills as I am not a medic, just another guy with similar problems. You would really need to know what your folate levels are before taking more pills.

I think, as with any chronic condition you will recognise the signs and symptoms of your body as time goes by for yourself. Having had high dose folic acid pills prescribed and felt the effect then tried for myself with the daily dose ones I know now when I need a 1 penny pill a day for a few days to solve the problem.

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I don't think he has had a 'loading period', his original post suggests (to me) that he has just had one single, initial injection.

No wonder he is feeling so bad if I am right on this?

Can you clarify AndyPandy?

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Yes I'm so sorry but I have had my loading doses in April 17 . I felt the best I had in years . B12 going from 300 to 1000 in that time but it quickly started to drop . Since then I have not been able to maintain good health as I have to wait such a long time until the next injection. This is my 3 rd after loading dose s . Thank you for your help . Any advise at all welcome x

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Sounds like a prime candidate for self injecting more frequently notwithstanding other elements being out of whack?

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Thank you ! Have you any idea how to go about this ? How have you got on I was interested in your story as my brother has been on omeprozole for 20 years his b12 came back at 300 but doctor is not going to do anything about it . I feel he is deficient also and worry he will get worse x

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You're better speaking to one of the more established members about sourcing and dosage etc as there are a few elements to be aware of especially around folate and B12, a kind of chicken or the egg scenario, and I'd hate to misinform you lol

Me, well I'm on my 3rd day without Lansoprazole, it does seem that for a long time I have had problems with some/all/any of the things affected by them such as...calcium, magnesium, potassium, iron,B12 and the other B's.

Initially I clicked with all the B12 deficiency symptoms however it is dawning on me I may have a situation where just the B12 will not sort things, for example, the pounding heart and anxiety can be caused by low levels of potassium which then affects the magnesium and can cause these symptoms which are similar to the B12 ones.

It's all very intertwangled and all these things rely on each other to be in a certain range for the whole system to work.

As the days pass now and my diet is containing more skim milk, cereals, a protein shake (calcium caseinate not these fancy futuristic tub of crap they sell to teenagers), red meat like liver and steak and a decent liquid 1-a-day B complex sachet along with under the tongue spray B12 my symptoms and hope are getting much better.

And therein lies the paradox I think; some people identify with symptoms of one issue, focus on that, do stuff to fix it and for a period of time they experience relief only to then slide backwards again and become even more lost and desperate because they only masked the problem by fixing one of a few things that were out of sorts.

In my case, the absence of PPI now is hopefully allowing Intrinsic factor to flow again along with more healthy levels of HCL (tummy acid). It'll take a while for the balance of my intestines to settle again (the good bacteria etc) and along the way my better-functioning guts will/have started to take up B12 and the other elements I mentioned that have been, for so long, suppressed.

I'm waiting for my GP appointment this Friday to discuss my bloods that should have returned so I can see if, what etc is 'too low, too high' before I start with any real 'aggressive' therapy in the form of high doses of any of the B's, or iron etc in big doses.

I feel that to do this right now may knock things off even more and to be fair to y much loved body, it so far, seems to be making progress in the right direction; it knows what it has to do and as long as I give it what it needs I'm pretty sure it'll do a damn fine job of patching things up again; let's face it, its the world's best ever adaptive machine lol

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Aw well done for trying to do all you can . I agree about the complicated balance of the body as I too have thyroid issues and iron problems . I am going to read up on the best course of action . As per advise above I started folic acid today just to see how that goes . Hoping for relief of some sort . Also looking into the best b12 supplement that will work for me .

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Andy if you think you're B12 deficient you should start the B12 BEFORE THE FOLIC ACID!!!

Too much folate/folic acid with low B12 can be harmful, that's why they say to always start with B12 for a couple of days first, then folate/folic acid (same thing).

Too high B12 with low folate is not harmful in the short run, you can't overdose on the B12.

Double check with Fbrider etc, there is plenty of advice.

This doesn't mean you're going to keel over and curl your toes, its just best practice to be safe and do the B12 for a period followed by the folate.

Hope that makes sense????

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Ignore that, I just realised you're on B12 for quite some time lol

I need to go and eat something, blood sugar is bottoming out I think lol

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Yes all made sense lol just that I have never been told to take folic acid by gp so gone from April until now as b12 depletes the folate apparently so I realise I must be low now as per responses from these great people on here x

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I'd be more inclined to say 'B12 uses folate for other purposes and as I'm giving my body a higher than 'normal' level of B12 so I need an appropriate level of folate to be of use to the B12'.

But it's the same thing in the end lol

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Yes that's it exactly ! X

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It is interesting to see the way PPI's are coming into the equation with B12 deficiency. I started taking Pantoprazole in 2002 for acid reflux after endoscopy which incidentally showed up a hPylori infection that was also treated. Eventually after about 3 years that was changed to Lanzaprozole as it was cheaper which continued, with dose increases for a couple more years then finally onto Nexium before having a Nissen fundoplication in November of 2009 because none of them were preventing stomach gasses from trying to suffocate me. At no time was the risk of B12 deficiency raised. There was no mention of the stomach wrap causing the stop of intrinsic factor after the surgery and the problems I had been having before it stopped immediately and have never returned. I haven't taken any PPI since the surgery nor needed to.

It was about 5 years or so after the fundoplication when the symptoms appeared and blood tests proved the deficiency. This does tend to confuse the issue slightly as there didn't appear to be any problems during and after taking PPI's but did after the stomach wrap.

I do, however, have a 'sort of relative - my wife's cousin's husband', who is also B12 deficient and has been taking Lanzaprozole since about 2004, after he was diagnosed as having a tendency for Barret's Oesophagus. The B12 deficiency appeared about 2 years ago.

The PPI's have been such a great treatment to prevent stomach ulcers and the resultant drastic surgery it would be serious loss if their use was curtailed as well as a significant expense for the Health Service to fund the operations and aftercare. There is never an easy solution in medicine is there what with side effects and latent defects.

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Very well thought out . My take is there has to be a genetic link almost that will leave the person like yourself with more of a chance of getting it .so those who are predisposed to it and then become more vulnerable to it because of the added risk of the effect of the PPIs

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My maternal grandfather had PA, I remember the district nurse coming periodically to give him his injection. My daughter has had PA for 20 years or so and had the Schillings test to prove it. Even so the PPI's were a real 'life saver' and I would have had great difficulty without them.

They saved so many people from seriously drastic surgery when it was discovered they solved Gastric Ulcers. There would have been serious pain for so very many without that particular gain.

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I didn't realise ! Thank you for explaining that x

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I asked my GP to allow the nurse to administer my injections every 9/10 weeks as this is when I feel I start to dip again

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Are you in the U.K. ? Thank you for answering it is unheard of as far as I know with this gp . I have also asked the nurse when getting my 3 monthly injection and she has said there is no likelihood of this certain gp allowing that . So either a new gp or self injections or a boost that works between 3 monthly injection period x

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Yes I’m in uk. I have a very supportive gp who says although the drug is designed to keep levels steady and there should be no dip in energy levels moods, he was happy to allow me the injection every 9/10 weeks. I also take lots of supplements and use b12 and folic acid patches- might be a placebo effect but feel they help!

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May I ask what brand of these u use mc88

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Real Protection B-12 energy Patch (these are not expensive at all)

I also take solar b-complex

Vitamin D3

Extra Folic Acid

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Thank you 😊

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