I am still new to this, not sure how to interpret things and need some advice ? I got diagnosed with Crohns & had a hasty resection 2 yrs ago, am now on Azathioprine and I restrict my diet to help manage D, pain in the surgery area. My routine blood tests for Azathioprine go to my GP. I asked to get Vit D tested after seeing it on here, it came back insufficient ( reading of 43 against a standard of 50) my GP marked this as fine and no action needed. I got a low on potassium (3.3 against standard of 3.5) and surgery called me to say eat more tomatoes & blueberries ( interesting idea but not practical if I want to leave the bathroom). Not sure if I should be worried or be complacent and leave this. My energy levels are frustratingly poor but b12 is fine as is the iron level.:sign0085:
Blood test question
- Thread starter kat-y
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Kat-y, I think I would call the Dr.'s office again. I just recently had this happen with my RBC and hemoglobin. The RBC was listed as "low" on the last test, and the hemoglobin almost low. Nurse was not concerned, just barely low she told me. But I looked at my results from Sept and Jan. and realized both had been going down with each test. When I saw the GI, he told me my labs looked great. I said "what about my RBC and hemoglobin?"....I had to pull the results of out my purse to show him before he listened to me. Have you seen your B-12 levels or did they just tell you they are fine? There has to be a reason for you feeling so tired.
Cheryl, thanks for this link. I am getting so frustrated at having to second guess their interpretation so I now ask for a printout of every blood test as I've had a few 'oversights', so I have had the exact B12 results ... makes me feel completely exposed and ready to lose the place. Trying hard to keep positive but am really disappointed about the lack of knowledge or action from the local level medical folks. Probably am also extra wound up as I really want a solution to the fatigue and I know that's not necessarily realistic and might just be part of the CD. Struggling to accept that though.
I know exactly where you are coming from, hon, I do. I've had Crohn's for over 20 years, and even back in the day of nearly constant flares, I have never felt this tired and rundown. I am ready to call my general practitioner and just explain to the nurse how I feel and my low RBC and see if they will do a FULL blood work up, doubt anyone has ever tested my D, it seems the GI only tests the markers he wants to check for the Crohn's and the Aza, you know? But if my white count is down to zilch, I want to work at keeping everything else at normal levels, to keep myself from getting sick as well.
I eat a banana a day. If I go up to more than 1 banana I am running to the toilet, same with tomatoes I roast them and can eat them sometimes not so much others. have bought myself a potassium supplement and a vit d oral spray. Not sure if this is the best way to go but I want to do as much as I can while getting a diet/ worklife balance that works.
I used to take a B-complex vitamin, with all the B's in it. Knowing I wouldn't absorb the B12, but wanted the rest of them. After I got the GI to notice the low rbc and hemoglobin and he told me to take iron and folic acid, I found that folic acid is the chemical folate, which is B9. B9 helps our body make red blood cells. So I am going to go back on the B complex as well.
Am mystified as to how you know to take this stuff - I have no medical background and making this up as I go along... I am now getting potassium & vit d over the counter just because I think maybe I should which seems like a less structured approach than I would have expected but maybe without much GP input thats how it will go. Taking a multi vit as well plus all the fish I eat must be keeping other stuff away ? maybe we are accidentally protecting ourselves from loads of other bad stuff 
might throw in a wee B vit too then ..if you find that's good !
might throw in a wee B vit too then ..if you find that's good !Honestly, when I was diagnosed, the world was not online. I just found this forum this winter, and it is a God send to me. I have no medical background either, I promise, but I have learned alot just reading things on here. You will too. David and Judith are a wealth of info/resources, to me. What I find is that too many of our doctors only look at the pharmacuetical side of our disease, when we need them looking at the whole body in general.
Here's a good thread on Vitamin D
http://www.crohnsforum.com/showthread.php?t=23826
http://www.crohnsforum.com/showthread.php?t=23826
I am going to be trading my GP in for a new one that can be bothered to interpret the results as I am wary of depending on my sketchy medical expertise ! The forum has been an amazing source of information to me too although sometimes makes me mad that we need to be so self sufficient to close the gaps in care. Feel a lot better for getting some perspective on it, thank you, less furious now than I was earlier x
Glad you are feeling a bit better, hon. Yes, I was mad that I had to point out all that to my GI, to get him to take notice. He makes a lot more money than I do, and has the education that I lack. It irritates me. I miss my first GI, lol! Have you seen a GI, or has all your care been under the GP?
In a perfect world, all the doctors and specialists would do as they should. Unfortunately, from what I have found, they don't. I just recently found enough gumption to request copies of my blood work faxed to me, although I have to call and ask each time.
David
Co-Founder
Hi kat-y. What was your specific vitamin B12 reading? And did they include the reference range?
Be very careful about taking a multivitamin and others on top of that. There are various vitamin and minerals that do have toxic levels or can have interactions and side effects.
I agree with your taking potassium and vitamin D, good job there.
How long have you been on the Azathioprine now? That you're running to the bathroom so often and have pain concerns me. What was specific area of your intestines was removed?
Sorry for all the questions I just really want us to be able to point you in the right direction(s). You deserve to feel well!
Be very careful about taking a multivitamin and others on top of that. There are various vitamin and minerals that do have toxic levels or can have interactions and side effects.
I agree with your taking potassium and vitamin D, good job there.
How long have you been on the Azathioprine now? That you're running to the bathroom so often and have pain concerns me. What was specific area of your intestines was removed?
Sorry for all the questions
I just really want us to be able to point you in the right direction(s). You deserve to feel well!David, the B12 result was 325 and they quoted ref range as being 200 - 900. They had also checked folate which was 11.7 and said it was fine, I bruise badly for weeks but not anemic it seems. I have no context for these results other than here ! I don't want to go to the GI if I am ill informed and bloods are not problematic except in ways I can fix myself..just a bit in the dark
David
Co-Founder
Hi kat-y,
This all must be so overwhelming for you If it is, let yourself feel overwhelmed for awhile. Feel the grief, frustration, anger, and every other emotion that comes up. It's ok to feel those emotions. This is actually part of the process (give this a read). In my opinion strength isn't holding in those emotions, strength is letting yourself feel them.
Clynn did great linking you to the other possible causes of fatigue. In addition to those, I realize they said your B12 at 325 is normal but there is still a very good chance you're deficient. The current reference range for B12 is terrible. Let me explain. As this paper showcases (print that out and take it with you to your doctor in case they give you trouble), up to 50% of people with vitamin B12 levels between 200 and 400 pg/ml are in fact deficient. This is because serum B12 isn't really that good of a test. The real gold standard would be to test for [wiki]homocysteine[/wiki] and [wiki]methylmalonic acid[/wiki] levels which are elevated in 50% of people with serum b12 levels between 200 and 400. I personally feel anyone with Crohn's Disease should strive for a B12 level of greater than 500 pg/ml and have it tested somewhat regularly to make sure it stays there.
Point being, flip a coin. There's a 50% chance you're actually deficient in B12 which can lead to fatigue, easy bruising, and other symptoms. Considering you have Crohn's Disease and had a resection, I'd bet good money that chance is actually MUCH higher.
*hugs*
This all must be so overwhelming for you
If it is, let yourself feel overwhelmed for awhile. Feel the grief, frustration, anger, and every other emotion that comes up. It's ok to feel those emotions. This is actually part of the process (give this a read). In my opinion strength isn't holding in those emotions, strength is letting yourself feel them.Clynn did great linking you to the other possible causes of fatigue. In addition to those, I realize they said your B12 at 325 is normal but there is still a very good chance you're deficient. The current reference range for B12 is terrible. Let me explain. As this paper showcases (print that out and take it with you to your doctor in case they give you trouble), up to 50% of people with vitamin B12 levels between 200 and 400 pg/ml are in fact deficient. This is because serum B12 isn't really that good of a test. The real gold standard would be to test for [wiki]homocysteine[/wiki] and [wiki]methylmalonic acid[/wiki] levels which are elevated in 50% of people with serum b12 levels between 200 and 400. I personally feel anyone with Crohn's Disease should strive for a B12 level of greater than 500 pg/ml and have it tested somewhat regularly to make sure it stays there.
Point being, flip a coin. There's a 50% chance you're actually deficient in B12 which can lead to fatigue, easy bruising, and other symptoms. Considering you have Crohn's Disease and had a resection, I'd bet good money that chance is actually MUCH higher.
*hugs*
I think maybe it's time I asked to see the specialist nurse in local hospital and take this type of specific request there as there are obviously circumstances that may affect me. Out of interest I will take this to my GP first and have a face to face . 50% is a pretty worthwhile discussion . Thank you for the facts, but also for the advice...much appreciated.
Judith
Crohnsforum Science Advisor
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I am so angry reading about what you have to deal with with your doctors. Way to take ownership of your own health care though!
It is completely wrong for you to have to do so though.
As David and CLynn mentioned, fatigue is SO complicated and there can be many causes and factors involved.
B12 is a biggie especially for Crohns patients.
I thought I might offer a couple more suggestions just to complicate things a bit more (as minor points because it appears the major ones have already been posted)
1. Do you have Psoriasis or other Extra Intestinal Symptoms? Out of curiousity, how are those symptoms? If Psoriasis or other condition is getting worse it could be an indicator your immune system is fighting *something* - this may be an appropriate or inappropriate fight. But often an increased immune response goes hand in hand with cytokines that make you feel lethargic, sleepy, etc.
2. Did you recently taper from your prednisone? Are you currently on prednisone? Tapering the pred is a very common factor in fatigue.
3. In your bloodwork, were there any tests done for CRP, Sedimentation Rate (Sed Rate), WBC (white blood count and possibly "diff" or "differential"), Thyroid testing, platelet count, blood sugar, Hct, Mcv, urinalysis?
You might like this page about B12 Deficiency
Outside Link about B12, Fatigue and Blood Tests
4. Do you take Vitamin E? This can increase bleeding risk depending on the dose and formulation.
5. Are you taking Fish Oil? What is the formulation? Does it contain Soy? Does it only contain Omega 3 Fatty Acids or does it state that it contains Omega 6 Fatty Acids as well? Omega 3 FAs are great for reducing inflammation but Omega 6's actually increase inflammation. Depending on your situation you might prefer to take one or the other but considering you have Crohn's and Psoriasis I would think Omega 3s are the way to go.
David swears by Krill Oil. If you are interested he would be the one to talk to about that.
6. Crohn's patients have a higher rate of Celiac disease than the non-Crohn's population. If you have not been tested for Celiac I would highly recommend trying a week where you have zero intake of wheat and gluten containing products to see if you feel better. If you are Celiac it actually takes many months to years to heal after removing gluten from your diet but most people can see if they will benetit fatigue-wise in the latter end of a week.
- Same experiment but with sugar.
- Same experiment with milk and milk containing products (including lactose and casein). These dietary experiments can be difficult but might be worthwhile.
Speaking from experience, if I have just one serving of wheat/gluten/milk/lactose or casein I am a zombie-like disaster which starts 12-24 hours after I eat it and lasts for 3 entire days.
7. Have you been on the Aza long?
Also, there is a sublingual (under the tongue) formulation of B12 which you might want to try if you are going the oral supplementation route.
Are you still receiving the B12 shots?
Are you on any other meds? There are some meds that can deplete B12 and vice-versa.
I hope you are feeling better soon. And, again, Way to go taking control of your health!
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