I'm newly diagnosed B12 deficient and feeling very unwell

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I have been feeling ill for months, probably longer with the same symptoms, palpitations, unsteady on my feet, absolutely exhausted all the time,recurrent bad chest infections, ending up in hospital once, where they looked for asthma as I was so short of breath,very swollen ankles, and out of puff when I try to do housework, headaches and I got the feeling over time that the Dr probably thought I was imagining things! In the last month things got so bad that the Dr. gave me all the blood tests for CHF as my symptoms, age and history seemed to point in that direction. Thankfully my heart seems to be ok for my age,71. the blood results did show that I had a  low B12 reading,106, and the Dr gave me the first B12 injection last week with 4 more to come at weekly intervals. I was so pleased my heart was ok and she didn't say about low B12 possibly causing my symptoms and making me feel so ill. I am wondering if anyone can give me some hope of feeling better, and if there is anything I can do to boost levels myself. I have been taking PPIs for years because of a hiatus hernia. I have read a lot of the posts and they are very informative and you know that other poor souls are suffering too. I hope in one way that this is the cause of my probs, I never knew B12 anaemia could be such a debilitating illness.

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  • Posted

    Hi Bigsby. PPIs will certainly make you B12 deficient. Someone should have told you before you went on them. It will also make you iron deficient. I have read that iron deficiency may preceed the B12 deficiency, probably because your iron stores are lower than B12 stores. PPIs may also affect bile salt secretion meaning that you may be nutritionally poor in riboflavin, vitamins DEAK. I would see if you can give up the PPIs, at least your iron and riboflavin, DEAK may get better. You will need a long, long course of B12 injections though..
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  • Posted

    Hi Bigsby, what MadgeC says about PPI medicines is true, but you should be very careful about stopping them. I have to take them, as I have a hiatus hernia too, and I get something called "oesophageal spasm". This causes pain like a heart attack, and I have had a couple of "blue light" visits to A & E because of it. You can use supplements to help boost your low B12, sublingual sprays and tablets that dissolve under the tongue. It's good to make sure your other vitamins are boosted too, if your B12 is low the others are struggling as well. Above all be kind to yourself, and rest when you can. I've found if I push myself too much I end up crashing for a few days. Hope you are soon feeling better. Marion 
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    • Posted

      Hello Marion, I think you are right and I would need to carry on with the Lansoprazole, I have been taking it for years and I do still have gastric reflux at times, although I had no idea of the long term consequences of taking this drug. It is a vicious circle! Do you use the sublingual B12 supplements? If you do, do you find the sprays or dissovable tabs better? I think I will need more than just the 5 injections to make a difference. Did it take a long time to feel any better? I hope you are winning the battle and thank you for your kind thoughts. Margaret. All the Margarets were used so I am using the cat's name.
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    • Posted

      Hi Bigsby, I've used the sublingual spray, I haven't tried the tablets. There is also a nasal spray, but I've avoided this as I sometimes have sinus problems. You should continue to get injections every three months once they've finished your loading doses. If the GP wants to do a blood test two months after your loading doses have finished, try not to start the sublingual treatment till after that test. It will show up in a blood test, and he might decide you don't need any more injections. It does take a while to see any improvement, longer if you've been low for some time. I am waiting to have another blood test, after being on strong antibiotics for a week. So no extra B12 until that's been done! It's just the total exhaustion that hits unexpectedly sometimes. You do just need to pace yourself more, if I'm out two days in a row, then I know I need a quiet couple of days to balance that out. Alcohol seems to be bad for me too. There's a lot of trial and error in finding out how things work for you. Best wishes Marion
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    • Posted

      Hi Marion, thanks for some good advice, I hope I will be able to act on it. I will try. Best wishes Margaret. ( I can't bring myself to sign off as the cat!)
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    • Posted

      Marion, I've got all mixed up and posted you on Martina's thread, I knew I was confused. Sorry to all concerned.
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    • Posted

      Hi again Marion. I'm still around and just to say I had my last loading dose on Thursday last. I have had , I think, some reaction to the Neo Cytamen after the last two doses, in fact I felt horrible on Thurday, rapid palpitations, came on that same afternoon, unsteadiness, and I thought that was maybe getting a bit better, headache, all on the same day. I have had maybe 3days when I felt back in the world of the living, but unfortunately I have also been very tired as well. I have taken on board all the kind advice you ladies have given me and I do rest quite a bit. Friday I had a bad stomach, diarrhoea and feeling very sick, it was not a bug and I wondered if anyone in your experience has had these symptoms after 5 injections. My sleep is still rotten too. I hate moaning but it does help to know what is going on out there. I am having my blood test this next Thursday, do you think that is too soon? I just feel that I want to supplement my intake of B12 myself after the test. I still take my over 50s Multibionta Vit daily. Any thoughts re. the reaction to last jab would be appreciated, or even if it was a reaction? I think it was, it all occurred too suddenly. By the way I'm still confused!!!! Ha Ha. Best wishes to you x
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    • Posted

      Hi again Bigsby, sorry to hear you're not so good after your last loading dose. I'm not sure what Neo Cytamen is, is it medication for another condition? I can't say I felt good after my loading doses, I'm sure the body struggles a bit to use the sudden influx of B12 when you've been low for a long time. My GP made me wait for six weeks after my loading doses before I had my blood test. It's to see how much the body has retained. If you go too quickly, there will still be a lot in your bloodstream. So the reading of the test results won't show how well your body is retaining the B12. I had my injection a week early this time, because we were going away. We both caught Norovirus during our break, so I feel my injection hasn't done me any good at all! As for confusion, i couldn't even manage to operate the TV controller or bathroom scales when we got home!!! Marion x
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    • Posted

      Hi Marion, so sorry to hear you were ill on your holiday, must have been awful for you, Ihad a similar problem once, went to Hawaii and was ill most of the time. Hate the place!!!  I read your advice and it made sense to cancel my blood test which I did today. I was just in too much of a hurry to get answers. Neo-Cytamen is Glaxo's brand of Hydroxycobalamin inj, widely used in UK and Ireland, don't know of a Generic here yet. This illness is such an 'up and down' rollercoaster, definitely a day to day time. Have you had B12 deficiency for long, silly question really as I know I have had problems for years, it is not something that suddenly strikes, like say Norovirus! I still don't have any figures for bloods, I will try to get those next time, meantime my best wishes for your complete recovery, and keep away from anything confusing like washing machines and ovens and hobs, TV controllers etc., glad I can still drive though. Thanks Marion for your help x
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    • Posted

      Hi Bigsby, thanks for your good wishes I do feel heaps better today. It certainly puts you off a holiday destination if you are ill there! I was diagnosed around this time last year and had my loading doses end Feb/beginning of March. I suspect, like you I'd had it for some time. It was complicated as I have an under active thyroid too. So many symptoms are similar, and I think the GP just doesn't want to look further. As the B12 drops gradually it comes so slowly we just think it's us getting older, slower etc...

      it's not until we have a crash, that we think it must be something more. Be patient for your results, and remember to rest and be kind to yourself. Best wishes Marion x

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    • Posted

      hi Bigsby. sorry to hear you're not making progress @ the speed you'd like to. on the positive side, it's early days & their maybe indentfiable reasons for the relative delay. for example, it' ll have taken 'some' time for the condition to evolve and so the body will need some time to 1) adjust to the b12 'flooding', 2) some time to replinish it's b12 stores, 3) and sometime to repair any damage done to the nerve cells due to the b 12 deficiency.

      the'reactions' maybe due to the body being in a bit of a 'twirl' (or even a bit of shock) at the sudden 'flooding' with b12, something, it had little of 8 weeks ago. it may need more time to adjust.

      the diarrhoea & confusion maybe due to low Folate levels as both are symptoms of Folate deficiency. relatively speaking, the 'slow' progress may also be due to low Folate levels as b12 can only be absorbed/utilized in the presence of sufficient Folate. might be worth having your Folate levels done when retesting the b12 levels.

      all good luck

      Caitlin.

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  • Posted

    Hi Bigsby, I am not a doctor so I don't know about the use of PPIs and hiatus hernia, but if you stay on them oral or nasal B12, or sublinqual sprays will not be very efficient. You need intrinsic factor for uptake of vitamin B12. PPIs stop the secretion of intrinsic factor. I would consider the b12 oils that people are using transdermally. This overcomes this problem and it also means that you wont' need injections, and you won't have the peaks and troughs of injections. Did you doctors not consider surgery for your hernia. Sorry - I don't know much about them, so please forgive me if it is a stupid question..
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    • Posted

      Hi Madge,Yes I have read about the oils and also transdermal patches, it is good that it is possible to supplement B12 in other ways as a lot of the posters  in this group seem to find that the injections do not seem to deliver enough B12 in their cases, I think maybe I will try to get through until I have had all 5 injections before "topping up" myself. I am utterly exhausted today and Tuesday is one of my Grandson's visit days so I was rather a slow Granny. It is so depressing if you can't see light at the end of the tunnel. Re. hiatus hernia, it is a small tear just where the oesophagus joins the stomach which allows reflux gastric acid to travel up the oesophagus and cause pain, burning and inflammation and possibly ulcers, and these PPIs stop the acid secretion in the stomach, so relief is obtained. It is not usually treated surgically. Thankyou so much for your post. I will certainly look at the oils, it seems strange that the dose is delivered through the skin,and enough is absorbed to enter the bloodstream and make a difference. I wonder if anyone knows what doctors think of dosing this way? Regards.
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  • Posted

    Hi Bigsby, sorry, I mis-read you last post. I thought you said "topping" yourself, not "topping up" . Sounds like you may be about my age if you are talking grand-children. Don't worry, you should be able to get your energy back. See how you go with the injections, I only switched to the oils because I hated the ups and downs of it all, plus the change in sleeping patterns. My kids are very active and we wanted to make sure that we could keep up with them on bush-walks etc, so I needed to make sure that I could be relied upon for energy. You will get there, at least there are the alternatives. The patches didn't "do it" for me though. That hernia thing doesn't sound nice. You must have to be so careful with what you eat and the quantity. I certainly don't envy you there. Why do they think it happens?
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    • Posted

      Hi Madge. Not quite ready to "top" myself yet!! You have to be a fighter and try to remain positive, difficult though that might be at times. Did the oils work for you? How much do you apply or rub in,where, if I dare ask, and how often? Is there a strength? Sorry, lots of questions. I have had the hiatus hernia for years, no problem if I take the PPIs.I did ask about why, but they couldn't give me an answer, although I think maybe carrying too much weight doesn't help! Best wishes.
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    • Posted

      Hi Bigby, a couple of comments.

      Yes I do like the oils, they have been great. You rub them on anywhere where there is bare skin. I use my forearm, knee of ankle, it doesn't seem to make much difference. It does make me sleep well though. Once a day seems to be best, as I notice if I miss a day, more because either I don't sleep as well, or because I can't think as well.

      As for the weight loss, many people have said that they lose a bit of weight once they go the oils. It seems to speed up your metabolism, so it is a good side effect. You can also try taking riboflavin tablets. This is another secret weight loss trick. Apparently you need riboflavin to help in digestion of fats. If you are a bit low you can't burn fat. Now I only found that out recently. Curiously it may be one reason for the increased weight gain in the community as they go off dairy. So much for lowering cholesterol, not much good if you can't lose weight and because you don't burn fat you have to eat more. Good luck and let me know if you try the weight loss tricks and how they go. Oh you do need to get proper thyroid function to convert riboflavin (vitamin B2) to FAD/FMN the active forms of the vitamin.

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    • Posted

      Hi MadgeC,

      I am interested to hear that you need riboflavin to help in fat digestion. I am qverweight and was told I was borderline diabetic last summer.I have been trying to cut down on fats and carbs, but what I would really like is to be able to be active and exercise. I used to love walking in the country when I was younger, and now I live in a beautiful area and cannot physically get out there due to exhaustion and pains in the joints. So it's a catch 22, I need to be more active to lose weight and I really, really want to be , I need to lose weight to help in that department and now I find I have B12 deficiency,I am so hoping that that the B12 supplements, either injections or some other kind will solve all my problems and I will be a new woman soon, or well on the way! I make light of things, but really I feel quite depressed or just low, don't know which, I have such high hopes that all my probs are down to lack of B12. As I said in an earlier post it seems better than heart failure! I am still waiting for a cardio appt. because of the palpitations. Thankyou for your help Madge, I do appreciate it. Margaret.

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    • Posted

      .Hello again Madge, I meant to ask if you knew of more than one supplier of the transdermal oils. I have found one in America but they are very expensive, just wondered if there are any more. Thanks x
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    • Posted

      Hi Bigsby, yes, it is a little known fact that you need FAD, which comes from vitamin B2 to be able to burn fat. You also need carnitine, that needs methyl B12 for synthesis just to transport the long chain fatty acids into the mitochondria. If you can't burn fat, then you have to burn sugar or protein for energy. The problem with burning sugar is that it is also comprimised if you are riboflavin deficient and it has been found that 50% of people who become diabetic are vitamin B1 deficient. Unfortunately the docs don't seem to know the biochemistry and often tell people to stay off dairy because of cholesterol concerns. Paradoxically this is the worst thing that they could do, as this is the major source of dietary vitamin B2.

      As for the cost of the oils they really are not that expensive. If you buy 3 bottles the cost is only around US 65cents per day. I can tell you that it is more than worthwhile to spend it. They certainly got my life back. 

      I would definitely get your thyroid function tested though, as preliminary hypothyroidism can cause B12 deficiency if your genetics are "wrong"

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    • Posted

      Hello MadgeC,

      Plodding along waiting for the miracle to happen but I wondered if you could give me any advice re. mouth problems and B12 deficiency please? I have heard about sore mouths but I have an extremely dry mouth and tongue all day and every day. This has been going on for about two weeks since I started having the jabs, not that I can think of anything to tie the two events together. I don't think there is a problem in the waterworks dept as I drink a lot and pass water with no problems. I wastold I was borderline diabetic last July, but my sugar was 5.9 two weeks ago, just on the cusp . If you have heard of similar I would be so glad if you would let me know please.  Best wishes, Margaret. 

       

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