Chronic Fatigue - B12 Injection and IV Iron Infusion

[nhostetler]

So first of all, here were my latest numbers:

Ferritin 14 (Low)

Iron 135

Unsaturated IBC 106 (low)

Calculated IBC 241 (low)

% Iron Sat 56 (High)

Homocysteine 9

Vit B12 474

Folate 16

I have had chronic fatigue, dizziness, headaches, shortness of breath, heart palpitations, etc for 3-4 years now and have been tested for everything under the sun. The only thing that came back was Lyme at first but results are not very accurate. I tried treating with lots of antibiotics for about a year and a half before finally giving up.

My doctor then found that my ferritin was low, so two weeks ago I got an IV iron infusion of 1000mg of Infed. I have not felt better at all since the infusion. The doctor also recommend that maybe I get a B12 shot.. so last night I did. I woke up in the middle of the night with a migraine and today I feel really tired and just out of it.

I am just so tired of being sick and fatigued and dizzy. I feel like if I could clear the headaches, dizziness, and brain fog, I could deal with the fatigue, but so far I have found nothing that helps..

Based on my blood tests, am I on the right track? Should I explore other areas?

[Gambit62 Administrator]

Sorry that you are struggling.

some people find that it takes 24 hours or so for them to feel the benefits of a shot and that the immediate effect is feeling totally wiped out and can include headaches, so you may feel better in the next 24 hours.

Have you had B12 shots in the past?

Your B12 levels don't really point to B12 as an obvious factor.

Presume that thyroid has been investigated and ruled out - if only TSH was done then may be worth looking at a fuller thyroid panel.

Also presume diabetes has been ruled out.

[nhostetler in reply to Gambit62]

I've had a full thyroid panel done and even an ultra sound. The only thing that comes back a little off is Free T4 comes just like 0.20 higher than the normal range.

Is it true though that B12 levels are hard to trust though because they dont really show how much your body is absorbing? What would be a good test to do? Intrinsic Factor?

[Gambit62 Administrator in reply to nhostetler]

It is true that serum B12 is a difficult test as the normal range is extremely large and its only accurate to within 20% but your result is well into the normal range where most people are okay which means that its starting to get a little unlikely ... but it does sound as if your GP is starting to run out of options so looking into the less obvious and B12 would be a less obvious possibility.

Tests that could clarify a B12 deficiency would be MMA and homocysteine - these look at secondary products that build up if your cells don't have enough B12 to run the processes that recycle them. However, they can also be raised by other things so you'd need to rule those out. MMA=kidney function, homocysteine=folate as common alternative causes.

Intrinsic Factor Antibodies is a test for a specific B12 absorption problem that will lead to a B12 problem. Its notoriously insensitive.

Falling levels of serum B12 are quite useful in establishing an absorption problem - meaning that the stores that you use to regulate B12 levels are falling and serum levels are falling as a result. However, there is a lot more to B12 than absorption from food - getting it from your blood to your cells and then using it in your cells - things that go wrong in these last two steps tend to be genetic in origin and quite rare.

Injections introduce a new factor that possibly activates some latent genes - sky high serum B12 levels - as people who have had injections need much higher serum B12 levels - overall - many not affected but significant numbers of people are - hence the question about whether you had had any B12 shots before - though the theory about latent genes is just a personal theory as nobody is quite sure what causes this change.

[Foxtrot89]

I’m sorry that you feel so bad! I’ve been there, and still recovering.

I think your homocysteine is high, which ties in with your low folate. If I were you I’d start supplementing with an activated B complex (I believe it’s B12 and B6 that can lower homocysteine).

Since you sound pretty exhausted and perhaps overly reactive to supplements it may be better to start lower than the recommended dose and go slowly in working up.

Have you ever considered having a genetic test done? I had mine done via 23andme and have a common genetic mutation called MTHFR. This can cause low folate and problems with energy production (also high homocysteine, though Ive never had mine tested).

I felt the worst I’ve ever felt in my life when I had low folate.

Folate, iron and B12 are all needed for good red blood cell production so if any are low the others can’t do their job.

B12 and folate in particular work synergistically so if one is low it can mask a deficiency of the other (and the symptoms are very similar).

I hope you can find some relief soon!

[nhostetler in reply to Foxtrot89]

I did do a 23andMe and found that I have Homozygous COMT mutation as well as homozygous VDR mutation. I am heterozygous for MTHFR.

My serum b12 was always around 700 but on my last test dropped all the way down to 475 which is when they also noticed my ferritin dropped for 30ish to 14.