Are the B12 supplements making me tired?

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Hi. I was told last week that my B12 levels were at 150 but I tested negative for pernicious anemia. My doctor said it was because of the gastritis that I have been suffering from for months that has caused a drop in B12.

I have been prescribed oral supplements of B12 and folic acid to take for a few months. I started taking these on Tuesday and since then I have been EXHAUSTED!! I never sleep during the day but that's all I have been doing this week. Now that my gastritis is settling I was hoping to get back into fitness but I'm just too tired! Even more tired than before the supplements!

Are these linked or is it just a coincidence? Thanks.

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  • Posted

    You need injections at that level , so they can reach the cells, plus folate and ferritin should be at a good level for the injections to work x
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  • Posted

    Were you tested for Intrinsic Factor Antibody?  Do research on this.  It may be that you are not absorbing the oral B12.  I have to inject my B12 weekly because I am unable to absorb any B12 that is consumed. A good B12 level is between 600 and 1400. Your numbers are fatally low.
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    • Posted

      My b12 was 364... Ferritin pretty low at 13. My reticulocyte count was high! At 123,334. Doc says b12 & ferritin are good. I picked up asublingual b12 anyway. My total iron was 47... I'm thinking im anemic... Mildly at least. I havent had the intrinsic factor looked at... Hm. Guess I will. I have all of the symptoms of anemia... Weakness.. Dizziness.. Fatigue... Heart palps... Breathless... Nearly fainting. Im at whitz end with it all. Im also now taking oral Vit C powder, B6, magnesium, florajen 3 probiotic & B12. Trying to heal myself. I was treated for hpylori last year with over 2000 mg of antibiotics a day. Idk.

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    • Posted

      I was and she said they were fine. She said this is a result of the Gastritis I've had. I had a complete blood count and apart from low Vit D, everything was completely normal.

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  • Posted

    It is so frustrating dealing with doctors about low vitamin b12, my level was 127!!!, the first doctor said that's fine and just to look at my diet, but I went back a week later, saw a different doctor bad he gave me an injection straight away, then I had 2 a week for 3 weeks, now I have to have one every three months, please go back to your Drs and insist on injections. X

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    • Posted

      I did wonder why I wasn't offered the injections but my Doctor is pretty good so I don't want to offend her by telling her she is wrong. I believe she may have prescribed me the supplements because I'm responding to the gastritis treatment, finally.

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  • Posted

    You really need injections at that level, and with gastritis you will be unable to absorb supplements properly through your digestive system. It's probably how your B12 got so low in the first place.

    Go to the Pernicious Anaemia Society website for a full symptom list for low B12. This can be due to many reasons, not just PA. They can help if a GP is  unaware of the correct treatment, or unwilling to treat. Best wishes for your recovery. Marion 

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  • Posted

    Hi LeaG

    You B12 level is low and you should be treated in accordance with the BNF guidelines as follows:

    Treatment of cobalamin deficiency

    Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

    Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks. 

    The BNF advises that patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment.

    As Jazzyanne says make sure your Folate level is kept good too now that you have started supplementing and more so when you have the injections you need to be having as it may well be that with your tummy troubles you are not able to absorb the B12 through your gut. Are you on a PPI such as lansoprazole or antacids?

    As to your symptoms, if the B12 is getting through it is not uncommon to feel that things are getting worse before they get better as the damage done to your nervous system starts to be repaired.

    I would certainly go back to your doctor and ask for injectable B12 in accordance with the guidelines.

    I wish you well.

      

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    • Posted

      Hello,

      Yes I am currently on Lansoprazole and Ranitidine, I also take Gaviscon as and when needed.

      Are the injections necessary? My doctor is pretty good so I doubt want to offend her.

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    • Posted

      Anything that reduces stomach acid will effect the way your digestion works. It is possible that if you have used these medicines for a long time they will be depleting your B12 too. It's hard to get the balance right. I am a little surprised that your GP hasn't suggested B12 injections. If you don't begin to feel any benefit from the oral supplements soon, and I'm guessing she will re-test your levels, then go back to the doctor and ask to trial the injection route. Usual treatment is six injections over a fortnight, then a blood test after six weeks, then three monthly jabs. Please don't just let it go on, permanent damage can occur.

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    • Posted

      Hi LeaG, yes everything marion20181 has said.

      Ironically it coiuld be that your because of your use of acid inhibitors your stomach acid level is too low to process the B12, but I'm no expert on this.  Perhaps you could query this with your doctor.

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    • Posted

      Hi leaG,

      PPIs like that reduce your stomach acid and thus your ability to absorb B12. You should join the Pernicious Anaemia/B12 Deficiency group on Facebook, there is a wealth of information on there. You could print off some of the files to bring to your doctor. If she is lovely like you say she should listen to you and be willing to learn. Unfortunately most doctors are woefully uneducated about B12.

      I would highly recommend going back for injections. I had similar levels to yours when I was tested last year. My symptoms began with fatigue and mood swings, then quickly progressed to cognitive decline and memory loss and then numbness and tremors in my hands.

      I'm much better now but I've had to self-inject every second day for several months. If you get the loading doses before any neurological symptoms start you should be fine with just an occasional shot afterwards as recommended and save yourself a lot of trouble.

      Good luck with it.

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    • Posted

      Well said hellybaby,

      I was 13 years between gastric surgery at the age of 17 until finally diagnosed with P.A. in 1972 so I dread to think how low my B12 levels were by then.

      Ignorance is not bliss and as you said "Unfortunately most doctors are woefully uneducated about B12" and this sitution needs to be remedied and sadly it appears to be down to us patients to bring our doctors "up to speed".

      I hope you are well in control now with your injections.

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    • Posted

      Thanks clivealive I'm much better now!

      It's absolutely mind boggling how poorly educated the average doctor is about B12 deficiency. Especially in cases like yours where there is a know cause for the deficiency and no one bothers to test for it. I hope you're feeling better now?

      My father was given metformin, which lowers B12 levels, for his diabetes and has dementia now in his late sixties. He was proscribed shots after his diagnosis but I don't understand why he wasn't tested for low levels earlier on.

      My mother was getting dementia like symptoms as well so I forced her to get a blood test and it showed her levels to be slightly above the cut off point so her doctor told her was fine. Only through sheer luck did I find a doctor with an interest in B12 who was willing to give her shots and the change in her has been a amazing.

      I had very low levels, all the symptom, and a family history but it took a couple of doctors before I found someone willing to even test me for it. Even then I had to self treat because the standard three monthly injections is too low to reverse neurological symptoms.

      Every day on the Facebook group you see the same issues experienced by new members over and over again. Truly shocking stories of people left with permanent nerve damage in care homes. One girl last week had been diagnosed with dementia at the age of 29 before she got her shots.

      All for the want of a non toxic vitamin shot!

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  • Posted

    Hello everyone,

    I just really wanted to say this is a battle for your life.  I have seen so many people that are afraid to insult the physician.  This delay thinking caused me  the use of my left leg for 4 months.  I was bedridden for the better part of 2 years sleeping.  This is not the time to fret about your doctors delicate feelings. It is a time to advocate for your life and the quality of life you have remaining.  I starting going to doctors when I was 48 years old. I went to 12 doctors in 3 years.  Each doctor gave different answers many said depression. I was fatal when I was finally diagnosed at 50.  The neurological damage, memory loss, exhaustion, heart damage, lung damage, bone loss, all remain with me to some degree. I have chronic pain daily. I have always been active and energetic.  I have good days and bad days but with my once weekly 3ML injection plus my many supplements, I travel, snorkel, hike, and enjoy what life I have left.  I have little time to complain since I realize I had reached a point that I could easily never woken up.  I do not worry about my doctors ego.  I have enough on my plate researching and managing living with all of this.  

    I have eave discovered that most pharmaceuticals are not our friend. I use many herbal supplements for vitamin replacement.  

    Thanks

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    • Posted

      hi i was so pleased to read your letter its gave me a kick up the butt, i have all the same symptoms you had, but the thing is my gpt  wont treat me with my level of b12 was  220 range 200 - 900 am just so tried low vit d as well and high cortisol .
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    • Posted

      Don't give up jazzyanne. My mother's level was 215 and she was in a bad way. I managed to find a good doctor who was willing to give her some shots and the change in her has been great to see.

      With your symptoms and borderline levels a doctor should be willing to give you a trial course of loading doses, but getting the right help is unfortunately hard. If you're on Facebook I highly recommend you join the Pernicious Anaemia/B12 Deficiency group. In the files section they have a list of good doctors who are properly educated about the deficiency. If you were lucky you might find someone in your area. If not there are a lot of research papers and articles that you can print off to badger your doctor with. You could ask your doctor to test your MMA, homocysteine, and active B12 levels.

      You must get your initial injection from a doctor or nurse in case of an allergic reaction but after that if you really are in a bad way you could learn to self-inject. It might seem overwhelming but it's surprisingly easy with an insulin needle into the tummy.

      Good luck and don't give up.

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    • Posted

      False normal B12 results and the risk of neurological damage  (U.K. N.E.Q.A.S Haematics org uk)

      “In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.” 

      So many doctors seem to just read the test resulls by looking at their computer screens rather than looking at and listening to their patients.

      This is so sad. 

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