Oh, sorry and the sheet says normal ranges are between 694 - 1618. I guess my question is: Is it legitimate feeling tired at this level, or no, not so much. My doctor thinks its perfectly fine.

OmG thats so low for being on IGG replacement! Thats horrible. Why hasn't your doc upped your dosage????

Your doctor should be aiming for a trough level of 7 g/L about 28 days after your injection. (4.74 is too low to confer any kind of protection. Generally, 7 g/L is the low-end of the protection spectrum.)

(You should have somewhere between 9 g/L and 11 g/L immediately following the infusion.)


Kris

Stimpy my levels are consistently at over 1100. When I was on IVIG my trough was 700-900. On Gammagards site, they say you can expect trough levels (for subq) between 900-1100. I would discuss with your doctor :( I'm sorry

Just to add, this is an excerpt from Dr. Charlotte Cunningham-Rundles:

The goal of Ig therapy is to prevent infections; however, the target trough serum IgG to attain varies depending on the baseline level of IgG. For a subject with a baseline serum IgG of less than 100 mg/dL, a suggested trough level would be at least 600 mg/dL, but for a subject with an initial IgG of 300 mg/dL with no functional antibody, the required trough level might be 900 mg/dL to supply the minimum normal level of functional Ig.

Jeez, who knew? I am just bumbling through life, tra la la la la. But here is the catch: I NEVER get sick! But I am constantly exhausted. Is that a good argument for giving him reason to up my levels? Remember also all my levels IgG IgA and the subclasses are non-existent, so could that be making me so tired? Thanks Kelli, I am going to copy what you sent me and show it to him. He is an oncologist/hematologist.

Stimpy I honestly do not know if its causing your fatigue. I DO know, would it hurt to try to up it??? NO lol

yeah, your right, let me get my battle gear on and try to convince the powers that be, urgh! LOL! Oh yeah, and my iron was a tad bit low, so I do think it wise that a lot of the ladies who are experiencing fatigue have the iron levels checked, and protein also, AND B12. But at least NOW I know what is SUPPOSED to be at thanks to you. Thank You! Oh also, HOUSEWORK SUCKS!!!!! I dont even have a full-time job and it is NEVER-ENDING! The best idea is keep your house streamlined (no junk) easy to say when you dont have children, eh? When your daughter gets old enough (or maybe she is now) you can show her how to help. Thanks for replying and stay healthy! Stimpy

My IgG levels are 1100 --and I'm STILL so fatigued. They said to give it 6 mos to a year and see if it helps the fatigue (which, baby step by baby step is improving. I infuse Tuesday, feel awful Wed. Thurs and Friday are great, Sat a bit less...Sunday less....Monday down the slide, Tuesday..UGH.)
I'd say as for MORE. It can take a while after starting to get you into the normal range...but if you've been doing this for a while, you should be closer than that!

Teal have you thought about dividing up your infusions to twice a week? Lots of people do it and it may help that fall off you get

Sounds like your levels are quite low. Extreme fatigue is what started me down this path. Every time I get extreme fatigue it's one of two things. 1) my thyroid has gone wonky, or 2) I have walking pneumonia, and I've had this 8 times this year. On antibiotics right now for it.. The first time with the thyroid my iron, vitamin D and thyroid where off. When it's w.p. (microplasma) I don't get "sick." I get fatigued, a headache and sweaty. It's subtle at first, I just walk around saying I'm more tired than usual. I'll start napping a lot and before you know it, I will literally take two naps a day and sleep like a baby 10 hrs at night. All the while yawning the few hours I am awake. I go to a walk in clinic where they do a chest X-ray and a blood test. Apparently the blood test alone can be misleading. So it might be worth getting tested. For both if you haven't checked your thyroid lately. Hope you get some energy back soon.
Toni

Yeah, I know, but see I am one of the weird ones. I have been infusing for YEARS at this rate, and I can probably honestly tell you this is what my levels are at ALL THE TIME, because sometimes I miss a week, and just go in the next, but the thing is, if I am not getting sick, why bother? I am confused. There was one other person I talked to, that also had non-existing levels and did not received treatment, and she also, never got sick. So I guess therein lies the term "variable". I dont know. But Teal-Orca, I'm sorry for your fatigue, it will get better, I would say give it a good year to REALLY feel the difference at a high replacement, Hope your doing better.

Fatigue can be caused by so many things, that's for sure. I struggle with both pain and overwhelming fatigue. I hate that word....I remember what it felt like to be "fatigued". To me, that means what I felt like after I spent the day working my butt off in the yard.

I currently have what I call exhaustion, the never ending, not relieved by sleep, constant overwhelming issue with having to force myself to even move, type exhaustion and weakness.

I also have Fibromyalgia, and CFS, which often go hand in hand with CVID. I also have Hashimoto's thyroid disease, so who knows what is causing what symptom.

I got so discouraged with my continuous decline in energy levels that I finally sought out the help of another physician. He did some testing, and discovered that I also have really low levels of vitamin D, B12, and Zinc. in addition to some really low hormone levels. All of these things can really contribute to how you feel over all. He also found that my Thyroid T3 and T4 levels were tanked, even with being on daily medication. My other physician was only checking my TSH level, and not looking at the whole picture.

I am currently just starting to get these issues addressed, and hope that my new doc's on the right path in helping me.

My IGG levels stay around 700 right before my monthly IVIG, and my hematologist thinks that is just fine. I am not so sure, but unless I start getting more frequent infections, he will not even consider raising my dosage.

Hope you feel better soon.

Barb

Stimpy I really think that your doc needs to look at you OVERALL you know? Debilitating fatigue is enough of a reason to ask for an increase in dosage. I rarely get sick anymore either and they still upped my dose. Take him the article and tell him you feel like POOP! LOL There are options, higher dose, subq, etc. Good luck to ya and keep us posted!

@3kidsandadog: My God woman, you have ALOT going on! Number one the fact that your hormone levels are tanked can cause havoc, you need to get on an estogen patch and progesterone pill. The thyroid issue is in itself enough to put you down for the count. Had a friend with it and she said major difference in how she felt energy wise being brought back to normal after taking her meds to fix it. And she is a real go-getter at the age of 55. I mean she works full-time as a RN and has horses to boot, always on the run. And then the fibromyalgia, thats alot going on. You need to keep going to doctors and getting every kind of test possible to find out what needs to be replaced in your body. Make sure your getting enough protein, I drink ensure with 25 grams of protein in it, has low sugar. I take multi-vitamin ALIVE, b12 (sublingual) vitamin D. It wont hurt you to take these. It wont give your energy, but until you can figure out a plan with your doctors for a regime, at least you know your getting proper nutrients. But get on the HORMONE REPLACEMENT AT LEAST AND THE THYROID REPLACEMENT. Then deal with the other issues. One day at a time, you will get better. Hope for you to get thru this day, and a peaceful slepp tonight.

@Kelli: Thank You for info. I wish I could print off directly your positing along with Vorteks and show the dr., but I guess I will hand write it out and take it into him and show it to him, so he knows that I know what I am talking about, because he does not know the fine tuning and the particulars about medicine and troughs and where my levels are supposed to be at during the month. So being armed with this information should cause him to UP my dosage. THANKS MUCH!!! Stimpy