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again01 10-21-2008 11:35 AM

What do you think?
HI! Need some help with these lab results. (I am a 38 female who has had a total colectomy over 16 years ago) I have had a sore/burning tongue for over two months, and finally went to the dr. She basically blew me off and saida maybe I should go see an ENT. A couple of weeks later, I requested a CBC and VIT b12 tests. Well these are the results. Emailed the dr and she said (via email) that I have Iron Def Anemia and to take iron supplements 3 times a day and then retest in three months. But in the mean time, I have had dizzines, lightheadedness, feels like palpitations in my chest, etc. I have started taking the iron supplements, but should I be doing more? Should my doctor be doing more? Some advice would be greatly appreciated =) Thanks so much!!

VIT B12 289
HGB 10.5
MCV 75
RDW, RBC 15.8
PLATELETS COUNT 554 (NOTE: Always have been high!)

scout316 10-21-2008 01:31 PM

Re: What do you think?
Hi....your B12 is way toooooo definitely need to have more B12.You can ask your do the MMA test,homocysteine test and folic acid test....they are standard tests when your B12 level is under 400(labs usually say 200-1100 in the US),but I would definitely push for those other tests or at least start taking B12 really need it.Plus you are already anemic so I can't see why your dr. didn't tell you you need B12...probably because if you're "in range" then they think you're okay,but that is Not True.A hematologist would be havng you get a B12 monthly shot 'til your level of B12 gets above 400....

I have low B12 and my dr. gives me a mothly shot...mine was DX as a hidden B12 deficiency when my B12 level was 279 and my MMA was sky-high...when your B12 is that low the other tests will help show your dr. if your deficient.Anyways you still need mor B12...your symptoms are from low B12 and probably from the low ferritin also.

Good luck...hope this helps you.....don't wait too long ,because low B12 can cause neurological damage.Take Care~Scout

again01 10-21-2008 02:31 PM

Re: What do you think?
Thanks, Scout.

I asked my dr to refer me to a hemotologist but she said she didn't think it was necessary but she said to keep my appt with an ENT this thursday!!!! Why an ENT? I do have other symptoms, like a metallic taste in my mouth, fuzziness, tired, etc. I just can't get over the fact that my dr was so flippant about my tests and diagniossed via email! Thanks again.

FLFLOWERGIRL 10-21-2008 04:14 PM

Re: What do you think?
againo1--Anemia is a ~symptom~ not a disease in and of itself. The first thing is to DX the anemia and the second thing is to find out ~why~ you are having this problem. It is NOT okay to prescribe iron without investigation.

In your case, and I don't know anything about a total colectomy, but I would think that this may in some way be contributing to your anemia. I do think that it should be ruled out by a GI doc anyway. They rule out many things that a regular doc does not check for. Do you have heavy periods? You are normal very low in B-12 which CAN present symptoms between 400-500 range and you are iron deficient with mild anemia. It won't hurt to begin SL B-12 daily until you find out more. I would recommend to begin the iron slowly and build up, iron can be very harsh. What are your thoughts? FLFLOWERGIRL:)

again01 10-21-2008 09:35 PM

Re: What do you think?

I was told by my surgeon after I had the colectomy, that because I no longer have a large intestine, absorbing vitamins may be difficult. I have not had a problem up until now. I mentioned this my PCP and that's when I requested to have a CBC and vitamin B12 checked. I have an HMO so I need a referral to a hematologist. Yes, my PCP did say to start taking Iron 3 x day. I told her that I wanted to know why my Iron was so low and she just ignored my question. I guess it's time to find a new PCP. My periods are not that heavy. It's the whole mouth thing for me that makes it hard. Not being able to taste properly. Food is either too salty, not enough salt, ice cream does not taste sweet, and I have grown up eating spicy foods that now when I eat spice my mouth feels like I just bit into a chili pepper!!!! My kids can spicier than I can! lol And now water tastes like some sort of metal. Are the B12 supplements available at the pharmacy, OTC? What do I look for in the supplements? Please advise. Thank you so much for your help.

scout316 10-21-2008 10:05 PM

Re: What do you think?
Hi...the best place is a health food GNC...I think B12 sub~lingual runs about $ will help with your sore tongue...just takes a while.Would your dr. be willing to write you a script for the shots...another person here did that...she said a years supply(I take it that is for one shot a month)was $30.00 and I don't know if that includes the needles....can you see if your dr. would do that for you?You sure need it...hope it works out for you.Hope you start feeling better soon.Take care~


FLFLOWERGIRL 10-22-2008 08:27 AM

Re: What do you think?
again01--A Hematologist is a blood doctor and a GI doc takes care of the internal organs, which is the type of care that may require. A Hematologist will probably send you to a GI doc (for a possible malabsorption syndrome) due to the sensitive nature of your condition. It may be a faster route, just a suggestion from my own experience.

If you do decide to supplement B-12 be sure to use the Methyl-cobalamin form of SL B-12 under the tongue. Keep us posted. FLFLOWERGIRL:)

again01 10-22-2008 03:10 PM

Re: What do you think?
Thanks FLFLOWERGIRL and Scout.

I don't think my PCP will write a script for B12 shots, she does not think I'm low, falls within the range. I see the ENT tomorrow, maybe he can help. If not, off to GNC. This whole thing is just so frustrating. I will let you know what the ENT has to say.

scout316 10-22-2008 06:12 PM

Re: What do you think?
Hi again01...I am really feeling badly for the situation you're in....can you explain to the dr. that you're going to see next that you Know people with levels as low as yours and they get B12 shots?I am willing to bet that your MMA levels are sky-high...that would show a Definite B12 Deficiency!!!!ENT's should recognize what low B12 does to your tongue....I had similar levels as you and I remember my taste buds were Off and my tongue hurt so felt Raw!!!!

Just don't be afraid to Really Push the ENT dr. to listen to you.....a Hematologist would definitely do an MMA test immediately when they heard your levels were that low.Listen can you just make a call to a hematologist and ask to talk to a nurse...then explain your low B12 and symptoms and see if the nurse can have the hematologist call you back?Maybe they could call your PCP and get a referral for you!!!I would do that if the ENT can't help you...or maybe tne ENT will call your PCP and request you get the MMA test and homocysteine test too.Oh I wish you the heart goes out to you...please keep us posted...we care!


again01 10-24-2008 08:32 AM

Re: What do you think?
Hi. Just to update, I saw the ENT yesterday and she said that she did not see any lesions or anything elso wrong in my mouth, no surprise there. She listened to what I had to say and said that I should probably see a hematologist, someone who understands the labs better than her. Like she said, this was out of her area of expertise. But she did send a message to the hematologist that I saw about four years ago for high platelet count. I have his name and I will email him today and hopefully I can get in to see him but it will be hard because I do not have a referral to see him from my pcp. So we will see. Thanks for your help and support.


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