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Crohn's Disease Forum » Tests for IBD » Blood Tests » What should I ask the Dr (prometheus and anemia)?


02-09-2012, 12:55 AM   #1
lowone
 
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What should I ask the Dr (prometheus and anemia)?

I tried asking this elsewhere and got no response.. but now we have a section for it!

So two sets of blood tests have been done. I have only received "summery" versions of the results and wont get detailed ones tell Feb 22nd.

Prometheus prognostic:
60% chance my Crohn's will get significantly worse over the next 5~10 years

What all should I ask the doctor when she goes over this in detail? I am thinking of asking for ideas on what can be done to maximize that 40% chance of it not getting worse!! Depending on how detailed of a response I get, think it would be worth it to also pursue the records release department so I can get to see the actual results instead of the doctor's interpretation of them? or will they just be gibberish to a lay person such as myself?

CBC and ??? (kidney/liver thingys):
Kidneys are good!
Liver is good!
borderline anemic????

So other threads here mention B12 and Iron? should I try to do something more supplement wise now? wait tell the 22nd and ask the doctor how to address this? Is this why I am tired all the time?
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Meds: Lialda, Mercaptopurine
02-09-2012, 04:22 AM   #2
DustyKat
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Hey Lowone,

I don't know much about the Prometheus but the question you are going the ask sounds spot on to me!

I personally like to have a copy of the reports on everything...bloods, scans, scopes, correspondence and so on. If you do have trouble understanding them then just come on here and ask away, someone is bound to know the answer or steer you in the right direction!

Where is your Crohn's located?
If you have ileal involvement and more particularly terminal ileum disease then it is likely that you do have a B12 deficiency, or at least on the the lower end of normal, and that may go some way to explaining away your fatigue. I would suggest that you also have blood drawn for Iron Stores, Folate and Vitamin D levels. If it were me, and seeing your appointment isn't that far away, I would wait and discuss it with the doctor but that is just my opinion.

Good luck with your appointment!

Dusty. xxx
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02-09-2012, 09:17 AM   #3
David
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Hiya there Lowone, sorry you didn't get answers elsewhere

I would personally get the specific results of the Prometheus prognostic test. I'm not sure how much you know about it, but it's basically a bunch of tests in one. They're testing for a variety of antibodies and genes that studies have shown relate to Crohn's Disease in one way or another. As such, you may not have mutations of one gene which means X but you may have antibodies which means Y. I personally like to know everything I can about my disease so want to know specific results for tests like that. That also let's me, as new research comes available, help contour my diet and treatment. The Prometheus prognostic is going to be hard for the layperson to interpret, "Ok, I have a mutation in my NOD2 gene and that increases the chance of fibrostenosing disease, what does that mean" might be one of your questions. But your doctor should be able to answer that question and we're of course happy to help whenever we can.

As for the rest, I agree with Dusty 100% about the vitamins and minerals. All of those she listed are common deficiencies for people with Crohn's Disease. And it's important to know if you are deficient because, for example, you may be anemic but getting plenty of iron and the real cause is folate deficiency as folate deficiency can hinder the production of red blood cells. And that can cause your fatigue. Or B12 deficiency could cause your fatigue. Or or or.
02-11-2012, 02:27 AM   #4
lowone
 
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Where is your Crohn's located?
They saw inflammation/ulceration as far up the illium as the scope went as well as all they out. I have not had them look in the other direction. But I did have mouth and some nasal sores that have gone away. So maybe the whole gi track!

I will probably get a copy of everything then! it would be interesting to see what all is in the files as well as the results.

I had an interesting experience today. Was running late getting out of work. So road my bike as fast as I could (3mi ride, averaged 24mph!! weeeeee) to catch up with friends for dinner, burn off all my ATP. Then while eating a decent sized dinner kept getting tiereder and light headed. Never had that happen before... Low blood suger/ATP plus all blood heading to digestion as a cause maybe?!?
02-22-2012, 02:35 PM   #5
lowone
 
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so results from Prometheus?!

I am a mutant! or at least the following thingy is:
SNP 8 (R702W) - mutation detected -heterozygous

other genetic markers were no mutation detected.

the serology section has a bunch o stuff I dont understand so guess researchy time:
Thingy : assessed value : reference value (why do some reference values list as Ml and others ml??)
ASCA IgA ELISA : <3.1 EU/ml : <8.5 EU/ml
ASCA IgG ELISA : 24.2 EU/ml : <17.8 EU/Ml
Anti-OmpC IgA ELISA : <3.1 EU/ml : <10.9 EU/Ml
Anti-CBir1 ELISA : 36.8 EU/ml : <78.4 EU/Ml
Anti-12 ELISA : 459 EU/ml : <368 EU/ml

then a few things that were not detected...

The results of which I was told do not really give them much of an idea on which way the course of my disease will go. My doc wants to try and be more preventative up front though to reduce long standing risks. She thinks (and i agree) that the lialda is working well enough on its own so until I have another flare I will just stick to lialda. Once/if I have another flare we will discuss options and see what all to do.

--

Blood/liver/kidney etc stuff all came back normal(on the lower end) except my hgb (hemoglobin) was low 12.6 g/dL (normal being 13-16.8)

after talking with her I am having a thyroid test, b12 and b9 test, and ciliacs panel test being done so maybe those will hopefully provide answers to why I am tired!

---
I did get paper copies of everything so will look at stuff and research! but I did put word for word all the "not-normal" results above.
02-24-2012, 10:22 PM   #6
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B12, B9, and thyroid all came back as normal. Still waiting on celiac panel. I seem to keep getting tired-er each day though so I dunno what to do?
02-24-2012, 11:39 PM   #7
David
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What were the specific numbers for the B9 and B12?
02-25-2012, 12:05 AM   #8
Catherine
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Hi

I believe you need a copy of full result of bloods, something there is also description of what the blood cells look like.

All results are need to work out the cause of cause of anemia.

You need to ask what type of anemia you have?
Also have you blood pressure done
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
02-27-2012, 04:44 AM   #9
lowone
 
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I have a copy of the first blood work, but nowhere does it describe what the cells look like. What kind of test is that called? Every dr vist they take pulse and blood pressure. If I typed up the blood work things would that be useful?

For the b12 and b9 I only got a call from the secretary person whom just relayed the normal status. I will ask for numbers when they call with the results of the celiac test.
02-27-2012, 06:08 AM   #10
Catherine
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Yes typing up full tesults would be useful, you need to include unit and range. The comments my daughter blood test was on film. Do you have iron studies, can you type them to.

Catherine
02-28-2012, 06:30 AM   #11
lowone
 
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Celiac panel result: negative! they called while I was in a meeting so did not get the b 12 and 9 numbers. I will get them tomorrow. I have a early morning meeting, then plan to go into my regular doctors office for an emergency appointment (i think i broke my ankle sunday and my regular dr's office is above the gi dr's office so can poke my head in the door and find out).

here are the results of the two blood other blood test (will use the code tag so it gets a fixed width font so i can kinda format it... cant figure out how to use the bb table tag(s)....

"Comp met prf"
Code:
thingy      tested at      normal range
Sodium      139 mmol/L     135-145
K           4.0 mmol/L     3.5-5.1
CL          101 mmol/L     98-107
HCO3        31.0 mmol/L    22-32
Glucose     102 mg/dL      77-99
BUN         16 mg/dL       6-20
CREAT       0.9 mg/dL      0.7-1.2
B/C Ratio   18             6-30
MDRD GFR    > 60           ml/min/1.73m2
Calcium     9.7 mg/dL      8.4-10.2
Adj Calcium 9.5 mg/dL      8.4-10.2
TP          7.7 g/dL       6.4-8.3
ALB         4.5 g/dL       3.4-4.8
SGOT (AST)  25 U/L         0-37
SGPT (ALT)  21 U/L         0-41
ALP         70 U/L         40-129
Total BILI  0.6 mg/dL      0.0-1.0
Globulin    3.2 g/dL       2.3-3.5
A/G ratio   1.4            1.0-2.0
CBC
Code:
thingy      tested at      normal range
WBC         4.9 X10 3/uL   4.0-10.8
RBC         4.64 X10 6/uL  4.3-5.6
HGB         12.6 g/dL      13-16.8
HCT         39.0%          37-49
MCV         83.9 fL        78-98
MCH         27.2 pg        25-35
MCHC        32.4 d/dL      32-36
RDW         15.0%          11.5-14.5
PLTS        320 x10 3/uL   130-400
02-28-2012, 10:53 AM   #12
David
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Those are some pretty healthy looking numbers, good for you
03-01-2012, 03:54 AM   #13
lowone
 
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Celiac test
Code:
Negative (yay)
thingy      tested at      normal range
TTG IgA     2.9 units      <=19.9
IgA         81 mg/dL       114-339
B12 9 and thyroid
Code:
thingy      tested at      normal range
B12         848 pg/mL      211-946
Folate      17.3 ng/mL     >9.1
TSH         2.92 uIU/mL    0.27-4.20
So all normalish, why so tired!?!
03-01-2012, 05:37 AM   #14
Catherine
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How is your weight? Are you getting enough calories? Protein?
03-03-2012, 01:44 AM   #15
lowone
 
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210-215lb depending on the day, pretty stable over this last month and a half. Pretty sure I am eating enough to cover calorie and protein needs.
03-03-2012, 02:15 AM   #16
Catherine
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Are you getting enough sleep?
03-04-2012, 11:10 PM   #17
lowone
 
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Until this weekend yes.. Too much even hence the problem of being tired all the time.

I would get home from work, make dinner or nap. Then nap after dinner or make dinner. Then go to bed and get 7~8 hours good sleep. And repeat.
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