B12 level of 800 but still i have sym... - Pernicious Anaemi...

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B12 level of 800 but still i have symptoms?

JhonnyBoy
JhonnyBoy
14 Replies

Hi, i'm 20 years old and was diagnosed with a b12 deficiency, a few months ago. My b12 level at that time was 140. I took methylcobalamin for 5 months. For 3 months, i took 1000mcg daily and for the next 2 months, i took 2000mcg per day. Recently, i got my b12 level checked out, and it came out at 800. Even though, my blood b12 has risen to such a good level, i still have symptoms? I must admit that my symptoms have got better, to an extent, but they are still there. My depression has decreased from an intense level to a mild level, my sleep has improved but it's still of low quality, i still have diarrhea and string stool, i still have to constantly urinate, i still have anxiety, i still have pins and needles; although a little less, and i still feel tired and have random pains throughout my body; predominantly, in my back. What should i do now? My doctor says that i should get my stomach checked out? Is there a more accurate test of b12 levels? And is stringy(slim) stool also a symptom of b12?

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EllieMayNot

Have you had active B12, folate, MMA and Homocysteine levels tested? Serum B12 is not necessarily indicating what it is actually getting into your cells. If you have elevated MMA then you are having some sort of B12 utilization issue. If folate is low, you can have anemia due to low folate. I am sure there are others here much better able to give you more details than this but figured I'd at least give you an introduction to other possibilities.

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JhonnyBoy

No, i haven't been checked for the above blood tests. I have taken 300mcg of methylfolate for 3 months. Does that rule out the possibility of my anemia being down to folate?

A person can not overdose on b12; therefore, should i experiment with b12 injections? Should I start getting b12 injections for sometime to see, whether my condition gets better? At the moment, i am not taking supplements because my b12 is in the upper ranges.

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fbirder
fbirder
in reply to JhonnyBoy

Injections almost certainly won't be any different from the pills. If your serum levels of B12 have gone up from 140 to 800 over five months then you are obviously absorbing B12 with little problem. It also means you almost certainly don't have PA.

Five months may not be long enough for all symptoms to go away.

I agree with doc - go see a gastroenterologist. You may well have another problem that caused your initial B12 deficiency that may be causing your other symptoms.

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EllieMayNot

You may want to have some testing to check for elevated MMA, anemia, cellular B12 & Folate, thyroid issues and other possibilities as well as getting your stomach/GI checked. Wedgewood's advice is very sound. For myself, my serum B12 was in the 600-650 range for years but I was getting increasingly ill and no doctor even considered testing for PA until recently. Turns out I have PA and the injections have helped me already (just over a month now) but I have a long way to go as I have been suffering neurological symptoms for close to twenty years. While this forum is helpful, you would probably benefit from proper testing. I guess the trick is finding a GP that will actually requisition proper testing, at least that was my experience.

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wedgewood

Trying to put myself into your shoes . I suggest you buy a book or two that our chairman Martin Hooper has written on PA . ( Amazon . U.K. ) It’s possible that you do have PA . There is a test you can take —The Intrinsic Factor Antibodies Test . This test is notoriously unreliable if you test negative. But reliable if you test positive! So you have a 50% chance of getting an accurate diagnosis .

If you have PA , it would explain your gut issues . PA causes lack of stomach acid which upsets the gut flora ( good bacteria ) This can cause constipation or diarrhoea. Also bloating and stomach aches . The fact that your B12 is raised does not mean that you don’t have PA . I must tell you that most doctors do not have knowledge about PA . It took me certainly 2 years to find out what was wrong with me . If you have PA , then injections of B12 are the solution . And that’s for life . PA is an autoimmune condition which cannot be cured . But with the right treatment . one can live a completely normal long life . You need to investigate further . I hope you get some better advice from other members .

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jostafford0

Hi JhonnyBoy, it wasn't until I added vitamin B6 (Pyridoxal-5-Phosphate) that some of my symptoms actually subsided. You need to research all the B vits as you may be deficient in others if you are deficient in B12.

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JhonnyBoy

Hi jostafford, I also did add other B vitamins, they didn't make me feel any better.

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Nackapan

I agree you need more investigations. Also tests for thyroid problems as symptoms overlap. I would keep up the b12 oral supplements .

I wouldn't jump to injections until you know what's going on.

The main thinges is improvements have been made however slow.

I hope you get answers soon so you get the right treatment.

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JhonnyBoy
JhonnyBoy
in reply to Nackapan

Hi Nackapan, thanks for your answer. The symptoms do kind of match with hyperthyroidism but I don't have a fast heartbeat and neither an increased appetite. Aren't these symptoms kind of 'major' in relation to hyperthyroidism?

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Nackapan
Nackapan
in reply to JhonnyBoy

I'm sorry my knowledge dosent extend thst far. All I know is its best to pause to get all info first. If you can be methodical it gets less confusing. Keep a record as daily as symptoms can alter. A patterm may emerge or come clearer. T C

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JhonnyBoy

I'm really grateful for all of you answering my question. Getting tests done is a little difficult for me, at the moment. I will also get checked for any stomach disease or intestinal disease as soon as possible.

One thing I would like to tell you all is that my neurological symptoms started to become prominent around 8-9 years ago while my stomach symptoms started to become prominent around 2-3 years ago, can something be concluded from this?

Another thing i would like to ask is that, would it hurt or harm me in any way, if i get injected with b12, just to see, what happens? I would be free from all of my responsibilities in the month of september, so even if i do get side effects from the injected b12 in my blood, it wouldn't affect my life in any way.

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EllieMayNot

If you do start self injecting, then any future B12, MMA and Homocysteine results may yield more favorable results due to your self treatment. While relief from symptoms would be wonderful, you may want to see what your test results are, first. (Personally, if I had known years ago what I know now, I would have started self injecting years ago. I could have prevented a lot of nerve damage.) It is such a personal choice that only you can make.

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JhonnyBoy

Thanks a lot Ellie. I won't self inject, i don't know how to. I'll just ask a doctor. After a month or two, when i do get free from my current responsibilities and have some free time on my hands, i will try getting b12 injections, just to see what happens. If my symptoms do improve then that would be good, if they don't improve, then i would have to continue searching for solutions for my problems, doctors certainly haven't been any help to me. Even my deficiency was self-diagnosed by me.

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Hanneke12

Even though you seem to be absorbing the B12 (hence don't seem to have PA), the symptoms caused by a B12 deficiency (which you did have) - especially neurological ones - may take a lot longer to counter than a few months of supplementing. Keep going, whether with orals or injections. Though do keep in mind (as others have rightfully mentioned) that supplementing will influence your test results. Neurological symptoms may take years to go, but that you feel a bit better after the supplementing is encouraging!

Regarding you stomach, it's worth finding out, because it's such an important organ, determining all kinds of nutrient absorption.

Hope you'll feel better soon.

Ps. maybe this will help you, I found it insightful: stichtingb12tekort.nl/weten...

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