Protein tests?

[UnXmas]

My doctor told me my blood tests show I'm seriously ill.

She said my kidney function is borderline-normal, my B12 is borderline normal. This is a decline from my previous results, which she put down to my recent ileostomy - I'm losing more liquid, hence dehydration, hence poorer kidney function. I'm not absorbing B12 so well, which is common with an ileostomy. Both these are fixable.

But she said my protein is desperately low, told me I could die, and referred me to a new gastroenterologist.

I've had a lot of blood tests in my life, but have never heard protein level mentioned before. She said it could mean I'll get an infection or my kidneys or liver could fail.

Googling "protein blood test" didn't get me that far - it seems there are many blood tests involving protein, and the one most associated with Crohn's is C-reactive protein, which I have heard of before because mine used to be raised whenever I had episodes of stomach pain and fevers, but that doesn't sound like the protein my doctor's referring to now.

We didn't have much time to discuss it because she was running an hour late by the time I got to see her, and she told me she couldn't deal with my health, that it's beyond her and I need to see a specialist.

Does anyone know about this protein blood test? I was in hospital for my ileostomy surgery just a couple of months ago and having regular blood tests there but they didn't mention this, so I'm guessing this abnormality is something that's come on fairly recently, or would the hospital not have done a test for protein?

 

[KayleighMeek]

The most frequently tested is included in a liver functions screen they will test your albumin and total protein. Albumin will be low because of malnutrition but can also be low when Crohn's disease is active. Total protein is a general measure of albumin and other proteins in your blood and if it's low sometimes they will have to investigate further to find out what is low.
My albumin is currently low and my Drs are monitoring it but the hope is with treatment it should start to improve again. Have you got another appointment coming up? Or can you speak to anyone to start getting a plan together for you? I hate appointments when you are rushed out and don't know what is going to happen I like to know what they are thinking even if it is just to wait and see.

 

[grt73]

Hi unxmas, that's not the sort of news to start a weekend on! There are 3 types of protein test as far as I am aware ESR, CRP and PV. As with you my results always used to come back high which is an inflammation marker within the body. Not surprising if the crohns was flaring at the time.
After my surgery I also had some weird bloods, my consultant was going on about low protein levels affecting my liver but said as I was only 3 months post op he wasn't worried. I'm not sure if they have been tested since and I will ask for tests at my next appt.
I was looking into it after reading your post and found this

http://www.newhealthguide.org/Low-Protein-In-Blood.html

I am pretty sure our issues will be down to malabsorption. An ileostomy is a fairly big thing for our body to deal with, hydration is a major.
I would defo get some more information regarding this and find out what is going on, in the mean time I would try and concentrate on your nutrition, loads of electrolyte solution in small amounts of water, strangely I found sparkling water took longer to go through me. Also get back on the ensures or something similar. Bulk up the calories and get lots of vitamins in one go!
I have to have b12 injections, do you have to too? When I was deficient, all my other bloods showed worse results too, I don't know if this was coincidence but after my injection I felt better within days, b12 plays a big part in digestion and absorption.
For your doctor today it was beyond her is unacceptable, I give up with the healthcare service, one in ten medical professionals will be good and the rest are next to useless. I hope you find someone who can give you the answers you need, if you do let me know lol cos I sure have a lot of answers to find too.
Most importantly though, try not to worry yourself about it, I spent way to long festering over what I had been told and I'm pretty sure it was a waste of time. Your body is an amazing thing and is still in the throws of trying to recover after your surgery, just got to give it time!!

 

[UnXmas]

Thanks so much, both of you! I guess that means I'm flaring again and/or suffering from changes brought by the ileostomy. I've got other medical conditions that affect my digestive system so I can't work out whether I'm flaring just by whether I have symptoms.

My doctor is generally very good - she's done me an urgent referral to the specialist, she just felt out of her depth, and although I would have preferred a more detailed explanation, I do appreciate a doctor who recognises her limitations and sends me on to someone with more expertise rather than other doctors I've met who think they know more than they actually do.

She got her point across that things were not good, then since we were running so late and she'd told me I needed a gastroenterologist, I didn't put questions to her about the details. She might have given me more time if I'd asked for it, but she was pressing the fact that I needed an expert so much I figured I'll ask at the appointment with the consultant (though of course I then got home and googled to see what I could find out in the mean time. ). She did give me a prescription for a new med that I've got to take to the chemists, so she wasn't neglecting my care other than not explaining all the details which I usually like to know.

Her comment about "you could die" was made after I tried to insist I didn't need to see another specialist and asked if she could just treat me herself (she's a GP). I probably should have explained that in my first post; she only started pressing the seriousness of my test results after I started insisting I felt fine and didn't need to see a consultant.

I don't have B12 injections, I guess I will be having them if my levels drop any lower.

 

[UnXmas]

I just read the link you sent, grt73. Odd - it says increasing dietary protein helps, but I eat loads of dairy and peanut butter already. Not so much meat or fish though, and no beans since they can block the stoma. I wonder if this means I'm having problems absorbing.

 

[Axelfl3333]

I sometimes wonder how some drs qualify?or do they need to learn people skills?what a thing to say then rush off and leave you,don,t really understand what she,s on about but if protein is low I,d be be eating a lot more fish as a temp measure till you see a specialist.if you,ve had a lot of surgery I would think your blood work would be everywhere for a while.it,ll be fine when your fully healed up.good luck,get well

 

[grt73]

I would say you are not absorbing everything you eat or drink, if you are only a few months in then I would say you need at least 6 months before you start to be somewhere close to getting the nutrients you need. I found after about 8 months I started to put weight back on and go for a wee more than 3 times a day. To start with I was constantly thirsty and no matter how much I drank it would quench my thirst.
I hammered the peanut butter and still do, I was told to eat as much chicken as I could fit in, mackerel is an excellent source of protein, it's high in fat, omega 3 oils (which are excellent at reducing swelling) and any other high calorie food I could eat without causing problems. Pasta/ noodles and tuna are good cos they are easy to digest and give a good mix of carbs and protein. Combine it with a protein type shake for extra calories and away you go.
I was obsessed with my weight and what I was taking in, I used to look at the scales daily and it used to make me cry seeing them say 69kg, I was 83 pre op.
That went on as I say for about 8 months and within a week it jumped to 74 and stayed there. I'm now about 76 and feeling better about myself for sure.

I'm still not completely up to speed and this year has been like climbing Everest, we just have to be patient as it takes no time to get ill and a hell of a lot longer to get better!

Do you still suffer with the crohns pains and cramps? I would say to try and keep a record of what you eat, what effects you, when you find the foods that are kind to you, cram them in!
For the first few months after my op I was taking 4 one a day multi vits, 3 cod liver tablets, 400 mg of iron tablets. They never did me any harm and I kind of thought I was only absorbing about a third of what I was eating. I firmly believe nutrition is the only way. We need the strength to get us through the inevitable next crohns flare up. Combined with our meds, life can just about be manageable
Stick with it unxmas, be patient, take what advice you need from docs and others and let your body tell you how it's feeling.

 

[grt73]

Oh and yeah stay away from beans, they are EViL:ylol:

 

[UnXmas]

I've been consuming a load of peanut butter. And chocolate - not sure if that's a healthy protein, but it does have calories. I saw they've already got Easter eggs in the shops, so I got some and I've started Easter early. My doctors have prescribed me Ensure. I seem to pee just fine, so I'm not sure if I'm losing that much liquid.

I wrote about my weight problems on this thread:

http://www.crohnsforum.com/showthread.php?t=57710

And after one partial blockage, no beans for me - or anything else with much fibre. Luckily the foods that can cause blockages tend to be the healthy, low-calorie foods, so a high-calorie diet and a stoma-friendly diet don't conflict.

I actually don't have much pain at all from Crohn's - diarrhoea has always been my major symptom.

 

[UnXmas]

Eating as many calories as I can tolerate whilst avoiding foods that could cause a blockage is going against the notions of healthy eating that I've been indoctrinated with. I think junk food is perfectly ok in moderation, and I can't understand people who insist that sugar/fat/carbs/processed food is evil, but even I am feeling like I should be eating some fruit and veg and whole grains now. I am getting all my vitamins from Ensure (and my blood tests included measures of various nutrients which were all fine), but living off processed, soft foods with only the occasional banana, glass of orange juice or spoon of applesauce is making me feel unhealthy. Which is stupid since vegetables caused an incredibly painful blockage and being underweight is posing a far greater threat to my health than my failure to eat "5-a-day" right now!

 

[grt73]

hey unxmas,
Thanks for the link,an interesting post! floored me a bit though seeing as you have had it so hard. I will never give you ideas again about what to eat i promise!!!! :ybatty: I guess you must have heard it all before and by the sounds of it are pretty in touch with whats going on. Do though eat that chocolate and peanut butter!
As you say I am not sure if it matters too much what you eat re the 5 a day malarkey. I only eat veggies now if they have been cooked beyond recognition and I stick to a selected few. It was weird because when i was ill and getting worse, there was a good year when I could nt even look at a veggie let alone eat one. I guess my body knew it was already partially blocked.
I was on TPN for 6 weeks or so, even then I still lost the weight, I have always been skinny and it has been a personal struggle for me. I never knew why my weight would go up, be good for a year or so and then without any warning would just fall off again. I sympathise with you because I got sick of people asking if I was ill and giving me all sorts of advice they didnt have a clue about. Being 6'2" and weighing in light made me look like a runner bean. It doesnt bother me now so much as everyone I know knows what I have been through, showing them the bag and giving the low down generally stops them in their tracks as they would nt even know where to begin in giving advice! Im kind of happy still being alive to be honest and will take every day and issue as it comes. resigned myself to the fact that nothing related to crohns or the NHS is ever going to be easy!
I hope you get the answers re this blood protein deficiency, please let me know when you hear, I truly am interested and will be keeping my fingers crossed!
oh and enjoy easter haha:ylol: