B12/ferritin Extreme Drop - Advice Needed

[alevoy18]

Hi everyone, thanks in advance.

I'll try to keep this short, but I'm basically wondering if my GP is overreacting or not. Here is my sequence of events:

Nov 2009 - Celiac Diagnosis tTG=56 - biopsy Marsh 3B - b12=210 ferritin=60

Nov 2010 - tTG=40 - b12=180 - ferritin=52

Mar 2011 - Addison's diagnosis with low cortisol and high ACTH - started cortisone

July 2011 - Hypopituitary diagnosed with severely low free testosterone and low LH/FSH - started testosterone therapy

Aug 2011 - tTG=286 - B12=151 - ferritin=48

Sept 2011 - tTG=275 - B12=75 - ferritin=19

I started to get really sick and lost 30 lbs in 3 months, so I had a repeat biopsy and tTG in Aug of this year. Endoscopy showed damage has improved slightly to Marsh 3A, but still there, yet tTG is now 286 (normal <20). GI was extremely confused. Endoscopy showed increased IEL and it worded it as "extremely heavy plasma cell and IEL infiltrate, but no definite abnormal cells found". I am waiting for immunostaining to be done to check for refractory, but it takes awhile. AT my age, I'd expect this is not the case.

While waiting I went to my GP and told her I've been having lots of joint pain, nerve type pain and feeling weak as of late. She rechecked my B12 and it was 75 (range 250 - 1000). My ferritin was rechecked too and it was 19 (range 50 - 300). My GP is really concerned with the sudden drop, especially since I am a 25 year old male, so I should be higher. She has called my Gastro and asked him to see my immediately as she said my levels should not drop that fast. I;m not too worried honestly, as I have addison's and autoimmune hypopituitarism (caused low testosterone and LH/FSH) as well, so I know my body is messed up.

Does anybody have any experience like this or knowledge in the area, as help is appreciated. I'm just not sure if her worry is warranted or are these levels not that bad? Any help or advice is appreciated! Thanks.

[Skylark]

I think the combo of low B12 and ferritin strongly suggests that your malabsorption has gotten a lot worse. It looks like the B12 has been falling pretty steadily, suggesting that your liver has run out of B12 stores now. Yes, her worry is warranted becasue you can't go a long time severely B12 deficient, plus if you can't absorb B12 and iron you probably have other deficiencies. Long-term B12 deficiency can cause neurological damage and you've been below 250 for a while. I imagine you're pretty anemic between the very low iron and B12.

Did she give you a B12 shot? If not, call the office and ask to see if they can schedule one. It's important to get your B12 back up. You may also ask about the possibility of IV iron to help with the weakness.

[rosetapper23]

I agree with Skylark! Your low levels of both ferritin and B-12 indicate malabsorption problems, and these levels need to be corrected IMMEDIATELY! The damage from low B-12 can be dramatic, and your heart can be affected, too. Do you feel breathless as though you're gulping for air (either at night or during the day)? Does your heart pound occasionally? If not, if your B-12 continues to drop, you'll begin to experience these symptoms, and they're scary. Numbness and nerve damage can occur from low levels of ferritin and B-12, too.

Do contact your GP immediately and request B-12 injections and iron infusions. She may not have heard of iron infusions, but they are the most common infusions given in the U.S. She'll need to contact the infusion center of your local hospital to prescribe the iron (which is given intravenously every week for four weeks in a row). If she doesn't know how much to prescribe, she can consult with the infusion center staff. Since this is a Sunday, I would also STRONGLY suggest that you purchase some sublingual Vitamin B-12 tablets at your local drugstore so that you can get some B-12 into your system ASAP. Being low in either B-12 or iron is a critical situation--the fact that you're low in them and unconcerned indicates (at least, to me) that you may be too tired or too foggy-brained to realize the direness of your situation. This has happened several times to me in the past. Believe me, you'll feel much better if you can get those levels of iron and B-12 up...and then you'll realize how "out of it" you actually were.

Please do something NOW!

[modiddly16]

I had the same issue with my b12, I was at 50.....50!?!?! and normal is between 200-900....I've been on the shot for 6 months and still i'm only at 190. I'd definitely start talking to them about the shot and maybe even get some over the counter b12 pills. You'll be surprised how quickly you start to feel better after you start the shots, but since I'm still pretty low...toward the end of the month I can really feel my "batteries" depleating. Low b12 can mess up SO much, I was actually having celiac-like side affects but following the diet strictly..while I'm not there yet, I"m doing MUCH better.