High Levels of Vitamin B12 and Ferritin: Any pointers?

Posted by cocoa @annieecruz, Apr 29, 2018

What type of doctor handles test like the MMA Urine test and the HoloTC? Test related to how your body breaks down/absorbs and transport/bonds B12? My B12 test came back extremely abnormal.

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@roxiemom12

I would like to know this as well. I have B12 levels >6,000 for the last 4 years. No one knows why and don’t seem concerned. Yet my neuropathy has worsened, inflammation worsened. Other blood tests are good. I have Sjogren’s, Secondary Autonomic Disorder, chronic reactive EBV.

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Hi roxiemom, welcome. Are you in the care of a rheumatology specialist?

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@canada1223

Hi there,
I'm curious if anyone might have some pointers for me.
I received my ferritin results 10 weeks ago - the result was 23. My B12 at that time was around 700 (I was supplementing B12 for a time before that but not a high dose and not consistently).
My doctor suggested 150 mg of elemental iron once a day which I have been taking since.
9 weeks later I had another blood test. This time my ferritin is reported as 138. My Vitamin B12 is now at 1400. (I had stopped individual B12 supplementation after discovering it was at 700, but there is a small dose included in my 150 mg iron pill).
I don't have obesity, thryoid issues, diabetes or fatty liver.
I'm not sure what to make of this as I assume my readings are way too elevated. I must have an underlying condition? Any pointers about what to explore next?
Thanks so much.

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My blood work came back with these two elevated (first time in my life) and Dr. says to get off all of my iron and B12. Concerned that the levels will drop in a few weeks and I'll feel rotten again.

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@fromlondon5

My blood work came back with these two elevated (first time in my life) and Dr. says to get off all of my iron and B12. Concerned that the levels will drop in a few weeks and I'll feel rotten again.

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Hello @fromlondon5, Welcome to Connect. You will notice that we changed the title of your discussion a little to better describe the topic of your discussion and hopefully bring in members with experience to share. Here is some information you may find helpful until other members share their experience with you.

"The body cannot excrete excess iron, so it stores it in certain organs, notably the liver, heart, and pancreas, which can lead to organ damage. Damage to the ..." --- Iron overload disorder: Symptoms, causes, and treatment: https://www.medicalnewstoday.com/articles/166455

Did your doctor explain why you need to stop taking your iron and vitamin b12 supplements other than the levels are too high?

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@fromlondon5

My blood work came back with these two elevated (first time in my life) and Dr. says to get off all of my iron and B12. Concerned that the levels will drop in a few weeks and I'll feel rotten again.

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I can answer about the high B12 as I have a similar situation right now. Elevated B12 in blood can indicate a potential problem with the liver or kidneys, undiagnosed diabetes, or another blood disorder. You are asked to stop all B12 containing supplements for a time to determine whether the high reading is from supplements or your body. 6 months is the typical time to stop supplements.

As for the high iron, John is correct, and those supplements can linger in the fat of the liver for a long time, so supplements must be stopped usually for 6 months to determine what your body is doing.

Eating a healthy diet will provide enough iron and B12 to keep you healthy unles you have some form of anemia. Were the supplements prescribed for you to treat a deficiency?

Sue

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@johnbishop

Hello @fromlondon5, Welcome to Connect. You will notice that we changed the title of your discussion a little to better describe the topic of your discussion and hopefully bring in members with experience to share. Here is some information you may find helpful until other members share their experience with you.

"The body cannot excrete excess iron, so it stores it in certain organs, notably the liver, heart, and pancreas, which can lead to organ damage. Damage to the ..." --- Iron overload disorder: Symptoms, causes, and treatment: https://www.medicalnewstoday.com/articles/166455

Did your doctor explain why you need to stop taking your iron and vitamin b12 supplements other than the levels are too high?

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No, he didn't. Going to find another dr. who can monitor these levels. Thanks

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@sueinmn

I can answer about the high B12 as I have a similar situation right now. Elevated B12 in blood can indicate a potential problem with the liver or kidneys, undiagnosed diabetes, or another blood disorder. You are asked to stop all B12 containing supplements for a time to determine whether the high reading is from supplements or your body. 6 months is the typical time to stop supplements.

As for the high iron, John is correct, and those supplements can linger in the fat of the liver for a long time, so supplements must be stopped usually for 6 months to determine what your body is doing.

Eating a healthy diet will provide enough iron and B12 to keep you healthy unles you have some form of anemia. Were the supplements prescribed for you to treat a deficiency?

Sue

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Yes, I was deficient but I think the amount prescribed was too high and not monitored

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@fromlondon5

Yes, I was deficient but I think the amount prescribed was too high and not monitored

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FromLondon, what were the underlying symptoms or the condition that you are trying to treat?

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@fromlondon5

My blood work came back with these two elevated (first time in my life) and Dr. says to get off all of my iron and B12. Concerned that the levels will drop in a few weeks and I'll feel rotten again.

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I have a low transcobalamin test(Vitamin B12 Binding Capacity, Unsaturated (Transcobalamin)( RESULT NAME RESULT VALUE UNITS REF. RANGE LO - Vitamin B12 Binding 638 pg/mL 650-1340 L Cap Abnormal Flag: L Reference Range: 650-1340) they prescribed sublingual B12 (taking 1000-5000 per day prn depending on numbness).
I asked about my ferritin levels and they were high at 204. I am extremely tired and have ringing in my ears. I have MS, SCAD, and Afib and I take metoprolol tartrate 50mg twice daily and Eliquis 5mg twice daily along with other supplements calcium/mag, and probiotics. I am tired of feeling BAD!! And I don't know where to turn next!!

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@towanda7

I have a low transcobalamin test(Vitamin B12 Binding Capacity, Unsaturated (Transcobalamin)( RESULT NAME RESULT VALUE UNITS REF. RANGE LO - Vitamin B12 Binding 638 pg/mL 650-1340 L Cap Abnormal Flag: L Reference Range: 650-1340) they prescribed sublingual B12 (taking 1000-5000 per day prn depending on numbness).
I asked about my ferritin levels and they were high at 204. I am extremely tired and have ringing in my ears. I have MS, SCAD, and Afib and I take metoprolol tartrate 50mg twice daily and Eliquis 5mg twice daily along with other supplements calcium/mag, and probiotics. I am tired of feeling BAD!! And I don't know where to turn next!!

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@towanda7, sometimes it can help to connect with others who are also managing multiple chronic and/or complex conditions like you are: heart conditions like SCAD and a-fib, neurological issues with MS and now possibly hematologic issues.

Your message, however, sounds like you would like to seek a mutlidisciplinary medical professional assessment. Have you considered a second opinion at a large medical center like Mayo Clinic?

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@fromlondon5

My blood work came back with these two elevated (first time in my life) and Dr. says to get off all of my iron and B12. Concerned that the levels will drop in a few weeks and I'll feel rotten again.

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Hi Colleen,
I would like to get a second opinion at Mayo clinic. How does one even start the process?
With all of my health issues do I send information up to the clinic. I know I have many complex condition but I don't go to the doctor much. I go for yearly follow ups but everyone seems to not really give a hoot or at least that's how I feel, and when I have a new health issue they treat the symptoms but not the root cause.
Are my health issues due to a genetic disorder that my cells have an issue picking up B12 as show by the Vitamin B12 Binding Capacity, Unsaturated (Transcobalamin) B12 Binding 638 pg/mL 650-1340 L Cap Abnormal Flag: L Reference Range: 650-1340) . But why are my other tests folate/B12 are high normal. The supplements are in my blood stream but the cells aren't picking them up correctly?
Thanks,
Pat

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