Weakness ONLY symptom?

Reposted from Parents forum at one mother's suggestion.
Thanks in advance for any replies!


hello, sanity savers.

Well, as it is DAY 10 post initial Humira and not even a jot of change, not a speck, not an iota, I am again doubting that V's Crohn's is solely responsible for her generalized weakness (her only symptom).

To this end, I've made an appt with an immunologist/rheumatologist big dog, retired but still sees a few pts, at a University hosp for Mar 14.

I emailed her GI to say if no improvement after the next set of shots next Fri, I shall be hard pressed to keep her on Humira.
I just cannot find a single case that has weakness as the ONLY symptom.
Many on here have no GI sx, but no one seems to be bedridden with weakness as she is, and also GI sx free. All seem to be fatigued but functional; I have a neighbor who started Humira a few weeks before V; she has gut symptoms galore but still has a full time job at the post office and the energy to go to it.

Has ANYone ever heard of such a presentation, ZERO GI sx but weak as a kitten?

Poor Violet I haven't heard of weakness being the ONLY symptom, no. If that's all you wanted, stop there and ignore the rest of this post. If you'd like to discuss her fatigue, keep going

I assume her vitamin B12 was tested? If so, what were her specific levels? Is all her normal blood work normal? I notice she's taking 1000iu of vitamin D a day. Were her vitamin D levels tested? If so, what were they?

I also see she has dysautonomia. Is that the generalized fatigue you speak of or something else? And did the fatigue start before or after she began taking the cyproheptadine?

I assume she was showing signs of anemia since she's taking that elemental iron. Do you know her serum iron, ferritin and total iron binding capacity (TIBC) numbers?

Thanks David!
B12 always upper 50% of normal, Vit D lower 25% of normal.
Iron, TIBC, tranferrin sat, ferritin all reflect anemia of chronic disease.

I can't find anyone who has weakness as the only symptom. But her doc says this is because the formula feeds are "blunting" (his word) systemic effect of the maelstrom in her TI.
Her CRP is never above 2 and often normal. Ever run into that? But her lactoferrin is always SKY high.

Oh and the cyproheptadine is to help with the POTS; it does help a lot with morning dizziness; she's been on it since last May, weakness started in Oct. I tried d/c'ng it just to see what happened; she had insomnia without it.

Oh, my aching brain...:eek2:

Has Voilet Iron Studies ever had comment on them. Are she ferritin levels rising without the hemoglobin levels going up. Do you sometimes get comments on what the blood cells look like.

There are three main causes of anemia with small blood cells.
1. Iron deficiency anemia
2. Anemia of chronic disease
3. Thalassemia

What is Voilet's hemoglobin level?
Has she had a thalassemia screen, thalassemia is unlikely depending on family background but as Sarah's GI says something to rule out due to comment that appears on her iron studies. I can post the comments if you what to see what they looked like.

Sarah has come back negative for beta thalassemia but we are waiting for a alpha thalassemia gene test to come back.

What is family background? eg we that Australia but my family comes originally have Scotland/Ireland which makes thalassemia unlikely but we are still ruling it out.

I'm full blooded Italian, (father is of Scotch-Irish-English descent) so thalassemia fits there but it looks most like anemia of chronic disease.
Hgb is lowest end of normal, 11.1-11.8, never above 12.

My daughter anemia looked like thalassemia, but after trail of iron for 6 months the ferritin rose in 80 but all other iron levels went down. We are getting all the notes about thalassemia on the iron studies, reason for further testing. The Thalassemia support group says her levels look more like anemia of chronic disease. Sarah hgb is 9.0.

Also the beta thalassemia screen (common form in Italian) is a simple blood test called Haemoglobin Electrophoresis and results took about 1 week.

The alpha thalassemia test is a gene test and we have being waiting 3 months are results.

Before I had a full blown flare, my only symptom for MONTHS was extreme fatigue. My doctor couldn't figure it out. Then, I also started to have shortness of breath and would fall climbing stairs..it was so odd. Hope she gets figured out soon!!!!

Thanks, Catherine and Mendy.

I feel better hearing someone else had *just* fatigue. I hope I hear of more. I just can't wrap my head around it.

imaboveitall said:

Thanks David!
B12 always upper 50% of normal, Vit D lower 25% of normal.
Iron, TIBC, tranferrin sat, ferritin all reflect anemia of chronic disease.

I can't find anyone who has weakness as the only symptom. But her doc says this is because the formula feeds are "blunting" (his word) systemic effect of the maelstrom in her TI.
Her CRP is never above 2 and often normal. Ever run into that? But her lactoferrin is always SKY high.

Click to expand...

I was wondering if it might be anemia of chronic disease. My understanding is that providing iron to people with anemia of chronic disease can actually be counter-productive. You may want to speak with your doctors about that. Here's an interesting read for you.

It's not uncommon for people to have normal CRP around here. High lactoferrin isn't that surprising to me especially if she has anemia of chronic disease.

Oh, and weakness/fatigue is a symptom of ACD

Thanks for the normal CRP info, that was bugging me.
She gets *buckets* of iron.

I'm learning there are many bizarre presentations of this disease. It makes me feel better. I drive myself nuts trying to come up with differentials.

imaboveitall

Be careful the ferritin doesnot get too high, that can cause problems. My daughter level have gone from low normal to mid range without any improvement in the anemia or other iron level(if anything they have got worse)

One thing we have noticied with Sarah as the anemia has got more severe the B12 and folic acid level have dropped but they are still in normal range. That why Sarah is taking a mult-vitmin.

Catherine

I have pretty bad fatigue but only mild Intestinal pain... although maybe thats because I have been avoiding pain creating food.

I have constant shortness of breath, and basically feel sick most of the time.

THe only time the fatigue dissapears is when I first get on Prednisone