Experiencing Low Protein Levels

    • Anonymous
      October 7, 2013 at 7:44 pm

      Hey all.

      It’s been quite some time since I last posted so I hope everyone is doing well.

      It has now been 4 years (as of Oct 1st) since my life changed forever and I am doing quite well with no setbacks of any kind and essentially no residuals whatsoever. At the age of 39, I feel absolutely fantastic and I’m more active and in better shape now than I’ve ever been in my life. And it’s not even close.

      However, there is one issue that I find quite frustrating and concerning and I’m wondering if any of you fellow CIDP or GBS sufferers have experienced the same thing.

      Like most of you, I have been getting the standard labs drawn at least once a year to make sure everything checks out OK. But for at least the last 3 yrs or so, my protein levels have been significantly below normal (5.5 – 5.8) despite eating a boatload of protein in my diet. Every time I’ve had my labs drawn, the results prompted my GP’s assistant to call me and tell me to eat more protein and in turn I’ve kicked up my protein intake another notch or two.

      Well, I’m now at a point where no amount of protein in my diet will give me results in the normal range (6.4 – 8.3). Since my recovery from CIDP back in 2010, I have developed a real passion for lifting and my #1 goal is to continue to gain muscle mass so naturally I need to eat a lot of protein to accomplish my goals.

      So I decided once and for all to log my typical weekly diet on lifting days, cardio days, and rest days to give to my GP. My protein consumption is never lower than 250 grams per day and that’s on rest days. My lifting days (3 days a week), I ingest about 400 grams per day.

      Needless to say, I already eat enough protein to choke a dinosaur so simply eating more isn’t going to help. Nonetheless, the results from my labs a couple of weeks ago was still only 5.7. Due to my muscle building goals, I don’t want to be on the low side of normal but on the high side of normal (8.0 or higher) so I’m not even close to where I want to be.

      My question to you is whether this is common for people with our condition and, if so, is there anything that can be done about it (treatment, meds, etc, etc)? My GP thinks it could very well be as a result of having CIDP or perhaps a gastrointestinal problem so a colonoscopy may be in my very near future (can’t wait for that!).

      I have not seen my neurologist since Jan ’13 in large part because the guy is an @sshole and because he also wants to lower my Cellcept dosage or take me off it entirely. Since I haven’t had any setbacks for a few years now, I don’t want him fixing what ain’t broken and changing jack sh!t.

      Have any of you had similar issues regarding below normal protein levels no matter how much protein you eat on a daily basis?

      Any info from your experience would be greatly appreciated.

      Be well.


    • GH
      October 8, 2013 at 1:18 am

      I don’t know anything about protein levels — nobody has ever mentioned them that I remember, but I do take the generic equivalent of Cellcept, and have recently reduced my dosage. I don’t know why you would object to that. It’s a powerful drug and I would like to take as little as necessary. If I don’t need it at all, I want to find that out and stop taking it.

    • October 10, 2013 at 5:00 pm

      immune suppressant medication can affect your body’s ability to absorb nutrients. Even though you are eating a lot of protein and nutritious foods, it may be that your body is unable to absorb it. If you are able to reduce your immune suppressant, maybe that will help your protein level.

    • Anonymous
      October 10, 2013 at 9:09 pm

      Thank you GH and Lori for your responses.

      My GP just ordered a 24 hr urine on me which I will do this weekend. His theory right now is that the Cellcept perhaps may have caused damage to my kidneys and could be the cause of my issue.

      But I did some investigating of my own and gathered all of my labs from medical records when I was hospitalized in addition to the specific date and dosage I had started taking Cellcept.

      My protein levels had already been on a downward trend and was only 6.4 (the lowest in the normal range) a week before I had even started taking Cellcept. That’s not to say I don’t have any kidney damage, but it’s not a result from Cellcept.

      To answer your question, GH, I guess I don’t want my neuro to mess with my meds because I haven’t had any setbacks since my hospitalization 3 1/2 years ago and it is the only treatment I’m getting for CIDP.

      My neurologist told me when I started on it that it would take 6 months to work and in the meantime I would need monthly plasmapheresis treatments. If I was taken off Cellcept completely tomorrow and suffered a regression a year from now, I would be forced to start that cycle all over again. He would put me back on Cellcept and go through another six plasmapheresis treatments until the Cellcept took effect.

      That is why I don’t want my neuro effing with my meds. It was lowered from 1500 MG a day to 1000 MG a day about 9 months ago. I don’t want him to fix what isn’t broken and I’m not willing to take that gamble. I love my active life too much to put that in jeopardy.

      That may sound like illogical reasoning, but that’s how I feel about it.

    • GH
      October 11, 2013 at 3:44 am

      I see. It’s true that it takes a while to kick in and awhile to get off it, and there is no way to tell what dosage you need or whether you need it at all except to try it. I was on a 2000 mg/day dose for a couple of years, then it was reduced to 1500. I expect after a year at that dosage to reduce it to 1000. After that, I’m not sure. My neuro says the only way to know if I need it is to stop taking it.

      I understand that no one wants to relapse after recovering and being stable for some time. That’s my situation and I certainly don’t to go backward. It’s one of those situations in which the patient has to consider the pros and cons and make a personal choice, but with a large uncertainty factor.