What would one conclude from these results?

[hivvergirl]

I feel very fatigued and am having night sweats and nausea. I have hypogammaglobulinemia, hashimoto's, undifferentiated connective tissue disease, and fibromyalgia, among other health issues. I am worried something is going on, here are my blood test results:
Igg serum 511
Subclass 1-269
2-196
3-38
4-4
Wbc 7.2
Rbc 4.39
Hgb 12.5
Hct 37.1
Mcv 84
Mch 28.5
Mchc 33.7
Platelet 343
Rdw 13.4
Mpv 10.5
Rdw-sd 41.1
Neut 49
Imm grans 0
Lymph 38
Mono 10
Eos 3
Baso 0
Neut abs 3.5
Lymph abs 2.8
Mono abs 0.71
Eos abs 0.2
Baso abs 0.02
Imm grans abs 0.0
Pt secs 12.0
Onr 0.87
Blood smear:
Rbc morph abnormal
Anisocytosis 1+
Elliptocytes occasional
Polychromasia 1+
Large platelets few
Plt est adequate

[backhurtz]

Your doctors would have to explain these results for you. We aren't doctors, so we can not provide any diagnosis .
When is your follow up with the doctor who ordered these tests?
I know we all get anxious when we aren't feeling well and have to wait for results.

[hivvergirl]

I've already followed up with the doctors. They have tested me for multiple sclerosis, lupus, hepatitis, among others. My kidneys failed and I was septic but they found no reason. They know all of my results but can't seem to find a diagnosis. I hoped that someone might have seen results like this before and could give me some insight.

[uomeasmile]

With your diagnosis that you already have, it appears you are seeing a rheumatologist. As frustrated as you feel, your healthcare provider is the best person to interpret your results. Anytime you have lab work or diagnostic imaging it needs to be clinically correlated with your physical exam. Your symptoms could be from your current diagnosis. I don't know if you are on medication, but a common drug used to treat fibromyalgia is Plaquenil. Disease modifying drugs like plaquenil can take months to provide any relief. My best advice is to follow up with your referring provider. I wish you all the best.

[Ken_PA]

I think that ironically it turns out that all the complexity is somewhat easy to understand, once one recognizes the nature of the mystery immune system disease that is UCTD. No one knows what causes undifferentiated connective tissue disease. There is no cure, per se. It looks/behaves like it might be other things, so that results in some confusion. It's a "diagnosis of exclusion" -- which means that other possible causes are ruled out and this is what is left. Besides, most cases are mild, and in a significant percentage, it just goes away on its own --- so there's not much research on it, so far.

But then again for some people, this autoimmune disease progresses and can be very dangerous to various organ systems. Most all of your tests are apparently looking for signs of that, to be on guard. You've already had kidney failure, and I think that's what you should be very most focused on. Unfortunately, you seem to be not in the mild group but in the high danger group. Kidney failure can be an offshoot of UCTD and might signify that your *undifferentiated* disease is developing into Lupus. (Selena Gomez, who had a kidney transplant, might have started out with UCTD.)

So what can be done at this point? Not much unfortunately, except to try to control the symptoms. Here is an excellent overview from a sharp rheumatolgist and med-educator (Jessica Berman) at what appears to be one of the top centers for UCTD in the country, HSS in NYC:
https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

Here are that doc's bona fides, including the famous Weill Cornell:
https://www.hss.edu/physicians_berman-jessica.asp

I'd suggest reading through that overview several times. There's a lot to absorb. Then there's not much more any doc can tell you, in the sense that there's no other secret medical knowledge out there.

Or you might start by listening to this rheumatologist in a short & easy vid:
https://www.youtube.com/watch?v=VkWavnOqnHQ


Is there anything you can do on your own? This same rheumy Timothy Lonesky does have a list of 5 things to try taking (generally with your docs' approval), and I think they do have some quite possible benefits in reducing your immune system activity. Each of those 5 can be discussed on this thread if you like; as usual, nothing is simple.
https://www.youtube.com/watch?v=M6XhPlyt69g


We can look at what clinical trials exist, to see what is on the cutting edge:
https://clinicaltrials.gov/ct2/results?cond=Undifferentiated+connective+tissue+diseases

But there's not much there at all. The top result is from that same HSS center - merely wanting to establish a registry list of patients so they can be tracked. No promising new treatments, and again I have to use the 'unfortunately' word.


You might get some comfort in hearing from someone like you who also has kidney failure from UCTD, and also might be around your age:
https://www.youtube.com/watch?v=KDPu6u5gBSU

From there you can find other personal accounts, too. The more you know, the more you might feel not so alone and not so in dread over the unknown. To me, they seem more or less happy and overall healthy, despite the UCTD. In a rarity for youtube, the comments are useful, too :)


Whew, so that's a start :) I'd say that there are some other things you can try to help yourself. If you'd like to hear.


Btw, I would be shocked if you are not on the Plaquenil that @smile mentions (or a quinine sister drug). Or have been escalated to methotrexate and/or long term steroids.

[Ken_PA]

I'm assuming that you'd meant to say hypERgammaglobulinemia, not hypO. (The gammaglobulins are antibodies.) But if you really do have hypO, then that's odd for UCTD and it's surely something to consider.

Btw, Hashi's is known to be associated with UCTD. So is Fibro.

Can you post the ranges for whatever tests were out of range? Offhand, the common ones seem in (or maybe only slightly out of) range.

[hivvergirl]

My diagnosis is familial hypogammaglobulinemia. The ranges vary every time I'm tested.  For the most part, my Igg serum is always low and the subclasses go up and down. My My IgA has been low a couple times as well. No one in my family has this but I only know my mother's side. I am on plaquenil and lyrica. 2 of my ANA tests were positive, and my thyroid antibodies were very high. My pcp is an internal medicine dr, he has referred me to see a rheumatologist, endocrinologist, and an immunologist. I also have a cardiologist for cardiomyopathy and mitral valve prolapse. I was first suspected of having lupus but he wants 5 of the tests to come back positive before diagnosing. He did a test that compares my blood to the blood of those with lupus and it matched. I've been on lyrica for over a year and plaquenil for about 7 months.

[Ken_PA]

This info (about the hypogammaglobulinemia being real) changes things. A LOT, I'd think. It makes things even more complicated, and sets you apart from the usual UCTD patient. But it just might lead to the answer.

After poking around on this, here's a speculation: A "complement deficiency" (CD) can cause or be associated with:
- sepsis... because types of CD reduce immune defenses
- lupus... because CD is known to predispose to lupus. You might have something like pre-Lupus.
- hypogammaglobulinemia... (CD is on the the DDx, CD might 'use up' antibodies)
- autoimmunity... because besides reducing immune activity, some CD types can conversely cause overactive immunity (because CD can mean that immune complexes don't get cleared away and thus they cause inflammation, e.g. when getting deposited in the kidneys)

Sorry for all that jargon, I put it there so as not to forget it - for possible future reference.

The aim is to try to find one thing that causes all your problems. That's called the Law of Parsimony, also called Occam's Razor. Have you been tested for complement deficiency? If not, I'd ask your pcp if he might order that, to have in your file before you see the rheumy. If a CD exists, that might very well crack the case. Though treatment might not be different in the end.

--------

Complement is an ancient part of the immune system. They're small protein molecules, not cells. They attach to targets just as antibodies do, and interact with both antibodies and immune cells.

[Ken_PA]

Oh, and a simple matter: are you very low in vitamin D? I've seen again and again that low vit D can make things worse in cases like yours.

[hivvergirl]

Yes, I'm taking meds for it. I'm anemic as well.

[hivvergirl]

Thank you for all the information. I will mention this at my next appointment.