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Mariah32 01-02-2013 01:23 PM

Newbie, advice before I see the hematologist
Hi all,

I thought I would give you a little info and see if you had any advice for me. I originally had blood work done in late September, was told I was anemic and given supplements. Had more blood work end of December, levels only minimally improved so now I'm headed to a hematologist on January 10th.

Here are the lab results (only numbers I have so far):
September: Hemoglobin 9.6, Hematocrit 31.4
December: Hemoglobin 9.9, Hematocrit 31.5

Pertinent info:
I had gastric bypass surgery in May 2007, took my supplements religiously for the first few years then admittedly slacked somewhat in the last few.

The symptoms that may or may not be due to anemia:[LIST][*]Extreme, constant fatigue (though I've had fatigue issues for years), feeling so tired that I want to cry. I tend to do things in short spurts, I might have energy for a few minutes then it's over. (But I also have been taking Adderall which is probably covering up a lot of symptoms. It seemed to work well at first, but now just makes me jittery and talkative for about a half hour. Doesn't really do much for concentration or energy.)[/LIST][LIST][*]Mental fogginess, horrible concentration, forgetfulness (forget something I was going to write down before I even get the pen to the paper)[/LIST][LIST][*]Occasionally feeling as though I just can't get enough air, like deep if my lungs are scrunched up and I am trying to expand them (not exercise induced, no real apparent trigger...just comes and goes at random)[/LIST][LIST][*]Hypotension, occasional dizziness (one episode of actually fainting last year, then feeling close to it one day at the store...had to hold onto the wall, felt like I was walking sideways. The first episode made some sense as I was getting up from a crouched position. The second one, I have no idea.)[/LIST][LIST][*]Addiction to wintergreen BreathSavers. Ok, I know that sounds really weird and it doesn't exactly fit into the Pica definition, but I tend to go through a couple of packs a day, and I need to chew them. Normally, I wouldn't think it was that strange but I never used to do fact I used to yell at my husband for chewing them, telling him that's not what they're for, you should let them dissolve slowly.[/LIST]
Are there certain things I should ask the doctor or discuss w/him? My fear is that I'm going to come off looking like a crazy hypochondriac...which is what I think a lot of people have been assuming about me. I am not crazy! And it's not depression, though I used to have some issues with that...though these problems certainly make me feel fairly depressed at times.

So now you know a little more about me...any good advice or helpful hints?

Mariah32 01-04-2013 03:16 PM

Re: Newbie, advice before I see the hematologist
Hi...I stopped at my PCP's office and had them give me a copy of my lab work. I thought I would post the additional info and see if that helps?

I figure I'll only put the results that were out of normal range.

HGB 9.9
HCT 31.5

MCV 76
MCH 23.9
MCHC 31.4

Iron 23
TIBC 481
Iron Saturation 5

Ferritin 3.7

Heatherx5 01-04-2013 04:52 PM

Re: Newbie, advice before I see the hematologist
It looks like you were in the same boat I was in 8 months ago. Not a fun one. All your symptoms match that of someone who is anemic. It's a good thing that you are going to a hematologist, this is the fastest route for people who are anemic and should help your numbers zip up faster.
I started with a ferritin of a 2, hemoglobin around 8, and iron count of 18. I had no insurance at the time so I went the oral route. My ferritin is now at a 33. The ferritin is what is making you feel so terrible. This number rises very slowly so be prepared. There is nothing magical that is going to make this go away, it's a long road to recovery.

People become anemic for many reasons. Seems yours is from the gastric bypass which is not uncommon for people that have had this done. My anemia is hopefully from monthly cycles, I just had an ablation so we will see. I'm praying that I get a bounce back now that I'm not losing so much blood.
A couple things you may want to have checked: Your B12 and Vitamin D levels. Low vitamin B12/folate seems to go hand in hand.

Your PICA is not strange to me at all. Mine was ice. I have a few broken teeth from it. I'm not sure if it was just the crunching or what but it's seriously something I could not live with out. I was up to 6-8, 64 oz. of ice a day. That is not a lie. It was horrible. I could not imagine my life without ice and I had a few people point it out to me, I was like noooooo I just love ice. I get it 100%. I can relate to every single symptom you have, you are not alone.

I will keep you in my thoughts and hope the hematologist can shed some light for you. You are not alone!

I also got some nice depression and panic/anxiety with all this too. I do believe it's because all of our organs are starving for oxygen (brain). I wish I could find my first post, yours looks just like mine.

Mariah32 01-04-2013 08:57 PM

Re: Newbie, advice before I see the hematologist
Thanks Heather! I tell ya, I started to think I was just lazy or getting old. It was really hard to keep saying to people, "but I'm soooooo tired!"...I felt like they thought I was looking for excuses for things. Now I admit, I am a bit of a procrastinator anyway, so that didn't help any. But lately I just felt as if my brain was just a giant pile of mashed potatoes!

I will also say that I'm a little bit ticked off at my primary care doctor. First of all, I really don't think I should have to keep training my doctors about my needs, specifically the gastric bypass stuff. I realize they can't know everything, but simple things like the TYPE of iron supplement I should have or not to drink tea and take iron at the same time (I am a chai tea freak) or that it's more easily absorbed w/o food.

I looked at some of the labs a little more closely...I realized they had some of my prior results on the most recent form. Ok, my most recent blood work was on 12/28/12. I see that my HCT levels were low since 2/24/10! My HGB levels were considered normal but were on the low side (12.3). The part that really irked me was that the Iron, TIBC, Iron Sat and Ferritin results were from the labs I had done in OCTOBER! They didn't check them in December! Ok, I'm no doctor but with those numbers shouldn't they have been checked again? Especially since I've been taking supplements since October. Aaargh!

I have had three sleep studies in the last ten years because of severe daytime sleepiness...all with no clear result (well, the first time they said it was "anxiety"). I've been taking Adderall just to function. A few years ago I had some strange numbness in the tips of my fingers and on my shins. Went to a neurologist...nada. They said don't worry about it unless it continues and really bothers you. It seemed to just go away and hasn't been an issue since...weird.

I guess part of me is soooo relieved that I am finally getting somewhere. The other part of me is extremely angry that no one thought of this before and I have missed out on a big chunk of my own life.

Thanks for listening :)

Oh, and yep Vitamin D was low, got supplements for that too. Not sure about the B12.

Heatherx5 01-05-2013 01:47 AM

Re: Newbie, advice before I see the hematologist
Haha, you sound just like me! I am a huge procrastinator too. I bet you I slept for the first 4 months of this, I got up to try and eat and had 0 appetite. I just wanted to sleep sleep sleep. It was to the point that it was becoming scary. Mother's Day I started blacking out and thought I was dying. That was my first black out experience and was very scary.

My Dr. seemed to be a little more educated when it came to anemia, but there are lots out there that just brush it off as nothing. My hematocrit and globin are now normal but my Dr. says as long as my ferritin is low he's leaving the anemia diagnosis because he knows how crappy off people are with low ferritin. Most don't even report feeling well till that number gets up to the 50-70 range, so slow moving and my OB says I can plan on taking iron for another year!!

In your case, I would say your iron needs to be checked more often to be making sure it's working especially since your so low! The numbness I get as well in my fingertips. I was ok one day, the next day I wasn't. Just like that. I was sitting at my computer desk and felt really funny and it was a panic attack. I went to the Dr. the next day and he said your just depressed here take these (antidepressants). Drew blood, called me back the very next day and said you are severely anemic lets trade the antidepressant for iron. He says that most all of it can be directly related to the anemia. Amazing how one thing can tear you life apart. I am even having weird vision issue. It sucks so bad. I think I'm getting better then something else happens.

Vent away. I really hope you get to feeling better soon. You should definitely have them check your B12, with all your brain foggy I bet your low. I would just go grab some over the counter b12 sublinguals and take them everyday anyways. You can't overdose on B12 and your body just gets rid of what it doesn't need. :) Talk to your pharmacist about them. It will help with the brain stuff too.

karibarry 01-07-2013 06:37 AM

Re: Newbie, advice before I see the hematologist
The numbness and tingling in shins and fingertips is a big sign of b12 deficiency.

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