Poor thing! Sorry you are going through this! First, your bloodwork. I just had this exact conversation with my doctor today, and he said it's very normal for blood levels to fluctuate from day to day, even hour by hour so they really only do look at very high, or very low levels. As we age, or get close to our cycles, or even what we eat, can cause "trends" that are of no concern. Second, lymphoma generally doesn't show up in labs, and leukemia is more a gene mutation and not hereditary.
After reading your symptoms, you may want to consider seeing a rheumatologist, taking a list of all your symptoms and copies of labs and test results. Not being a doctor, I can only guess, but you could be battling an auto-immune disorder OTHER than the Hashimoto's. AI can cause enlargement of lymph nodes as well as many of your other symptoms. And, it's not uncommon at all to have more then one AI. You mentioned the rash, lymph nodes and swollen spleen/enlarged liver - that may point to Lupus.
I would strongly recommend a rheumatologist consult.
Hi and thanks for your quick response! The thing is, I did see a rheumatologist at the end of the summer (August 2008) and he ordered a massive amount of tests for me, for all sorts of autoimmune conditions. Nothing showed up, though I noticed all of my globulins were on the high-normal end. I'm not sure if they've changed since, but the rheumatologist said he didn't see anything wrong with me from a rheumatologic perspective, except for the moderate arthralgias and myalgias.
I didn't want to assume that my CBC was an 'absolute' test, so I charted the various levels over the course of several months to see if any trends emerged. The last two times my WBC count was taken it was steady at 7.5, meaning it's staying consistently elevated (compared to what it has been in the past) while my RBC count has been very clearly going down every single time it has been measured since the beginning of this mess a year ago. I just got another CBC done last Friday, so I'm awaiting those results. I just want to be sure my doctors aren't missing anything since they've been so confused by my case for awhile now, and since WBC increases aren't seen with autoimmune diseases.
A lupus ANA test I had done was negative, as well as the more specific dsDNA test for lupus. I thought I might've had that, though, too! And my GP last summer actually suggested I see a hematologist, while some endocrinologists at Columbia University (my friend knows some and spoke about my case with them) suggested a full-body scan because it didn't sound like a clear-cut case of thyroid disease, but they were concerned something odd was going on. I think my spleen is still swollen...I have upper left quadrant pain/soreness right now, along with a feeling of fullness there. I don't know how a thyroid disease would cause that. And if I had a bacterial infection causing a rise in WBCs, this would've been wiped out when I went on a heavy course of antibiotics after I was bitten by a dog tick (just to be sure I didn't contract Lyme) in late 2008 while visiting home. My EBV is normal and inactive, so unless there's another serious virus floating around my system, I don't know how to explain the rising WBC count.
In the Fall of 2007, several months before I noticed I was becoming really ill, I dropped 30 pounds in weight over the course of 2 - 3 months. I chalked this up to starting on Provigil, which helped me feel more awake and allowed me to be more active Also, now that I'm still hypothyroid and have been for the past year according to my endocrinologist, I should've seen a weight gain since I haven't been treated for hypothyroidism until recently. If anything, I'm slowly losing a pound or two every few months, or my weight is staying constant. And I'm not very active, though I try to be...I'm just so incredibly fatigued...that I'm shocked I haven't gained a ton of weight since I spend most of my days sitting.
My endocrinologist isn't sold on the idea that it's Hashimoto's, but she had to make a diagnosis in order to begin treating me with thyroid hormones. I'd prefer not to have cancer of any sort, but I don't want to rule it out since I'm still a mystery medical case right now!
Thanks for your help and if my recent bloodwork is interesting, I'll post it for consideration.
Oh, it also dawned on me to note these few things:
--I noticed petichae in my mouth on several occasions, but these typically disappeared in a few days or weeks, except for one under my tongue. I also spotted two of these on my lower abdomen, one of which has been there for a loooong time (at least since I was sick last year). My platelet count seems alright, and I have been taking baby aspirin by order of my neurologist since late November. If anything, my platelet count has risen slightly since then!
--I think my groin lymph nodes are REALLY swollen (picture just posted under my photos in my profile) and my elbow lymph nodes are also swollen. I palpated what I believe them to be (I'm not a doctor, but I'm a Biomedical Engineer so I'm intimately familiar with anatomy & physiology), and they feel firm but not fixed in place. My neck, arms, and lower half of my body have never been imaged...ironically. Figures! I'm definitely going to have my GP look at my groin lymph nodes next time I see her in...two months. *groan*
--At the undergraduate level, I also majored in Chemistry, and I've worked in a pharmaceutical company's chemical process lab and pilot plant--so I've been exposed to plenty of chemicals, including benzene, dichloromethane, and chloroform in varying amounts over the past 5 years.
--As of the past few months, I haven't had much of an appetite. My stomach will feel hungry sometimes, but my mind never seems to want to eat. I also feel nauseous for no reason every now and then, and I don't have any interest in consuming the foods I once loved.
Any insight or thoughts anyone has would be much appreciated. I've been sick for a year now, and my doctors seem to schedule appointments rather far apart, as though they just don't know what to do with me or my case. I'm not an anxious or impatient person, but I'm getting increasingly frustrated with doctors and the fact that I'm so sick with no real end in sight. At this point, a "sure" diagnosis looks great to me! Since my doctors aren't so gung-ho about finding a diagnosis, I'm just gathering as much information as possible so as to maximize my visits with them.
Any chance one of your docs would consided doing a biopsy on a swollen lymph node? That would at least rule out malignancy if nothing else...
I think the reason they never suggested that was because they didn't actually look at my groin lymph nodes and assumed if I had Hodgkins or something, it'd show up in the CT scan of my chest. And my elbows...I didn't even know there were lymph nodes there until today! I'm going to have my GP look at the lymph nodes next time I see her, which isn't for awhile. But I may ask the Cardiologist I'm seeing on Thursday to take a look at them for me.
Would leukemia or lymphoma cause any skin color changes? Mine is sometimes slightly oranger/tanner, even though I look incredibly pale most of the time, and the anemia isn't helping that lol. It might be hormonal, but usually this transient "tanness' appears to be accompanied by a red flush of my skin. I'm not really sure...it's hard to tell what's from the medication and what's an actual symptom!
Thanks, again, for your help, and I promise I won't pester you about medical advice for too much longer!
Have you considered hemochromatosis?
Here's a website specifically for that:
I mention it because you mention the orange skin
You are not a bother. I know what it's like to try and find a reason why you feel so bad. I've been going through it for years, and still have no concrete answer...
Hate to interupt this conversation - just a thought or two. Your doctor suggested you see a hem. -- good idea!! Also, look up on the internet "spleen- itp". It seems to me that your spleen is giving you the greatest problem. Another cite to log into is the chronic leucytic leukemia forum - cll forum. There is a lot of info. concerning blood work and its interpretation and how the spleen can be involved. Join as a guest
Would not like to be in your situation - so many things going on and at such a young age.
I hope that some of this can be resolved for you.
Thank you roserd! Appreciate the input!
Dnmh--I actually JUST looked up hemochromatosis yesterday, because it cropped up when I was reading about thyroid disease! I figured it's more likely for me to have adrenal dysfunction or hemochromotosis than cancer, but I don't think I have hemachromatosis since my hemoglobin level is decreasing. Though, I'm not sure if it's possible to have hemochromotosis and low hemoglobin levels. Thanks for your continued help--what is your story? Doctors haven't been able to figure out why you're sick, yet?
roserd--thanks for your input, I really appreciate it! I looked up "spleen itp" and while I do seem to have a tendency to have autoimmune disease, my platelet count has been fairly stable. I'm going to hear back on some bloodwork within a day or two, so I will definitely take a look at the new level to see if anything is changing that might indicate this, since my spleen has been swollen for awhile now (I think). I appreciate your well-wishes; I could sure use them. I tend to think that I wouldn't be in such bad shape if doctors had hurried to figure out what the deal was last summer, a few months after I started feeling sick. Instead, they didn't know what was going on and they just seemed inclined to give up.
I just heard from my sleep doctor that I don't have obstructive sleep apnea anymore (maybe the thyroid was blocking my airway all along or something and now that I'm on thyroid medication it doesn't anymore?), and that I don't have narcolepsy, but it only took me 8 minutes to fall asleep during a nap study, on average. She said that perhaps my medication (beta-blocker) was making me tired, but I pointed out that this fatigue had worsened well over a year ago, and that I had been pretty tired before this, too.
My eosinophil level is going up (it's almost doubled since last summer, from 1.7% to 2.6%), and I think I'm feeling it because I have a lot of random itching, mainly on my torso, arms, and scalp. Sometimes I feel it in my legs, but not as often. My splenic region is also always sore and my liver is sometimes sore, too. Last night, I had some weird episode where my skin flushed, making me look tan and red and feel hot, I felt itchier than normal, and I had trouble breathing because my airway narrowed. I didn't take any medication so it was either something I breathed in my apartment or the clam chowder I had just eaten (which I've eaten before and never had a problem with). It was so odd and I was going to go to the hospital, but I decided that I felt okay after a few minutes and that it didn't seem to be worsening. Eventually, I was able to breathe normally again. I've had flushing episodes before, but never involving any real problems with breathing; just low-grade fevers, and it mainly occurred at night.
I'm just going to keep searching for information and visiting doctors.....and writing long posts, apparently. =)
Oh! I noticed another petichae on my left middle-finger today. Is it odd to have these occurring every-so-often if my platelet count is normal and seems to be relatively stable?
I have been diagnosed with cll....chronic.leucytic leukemia as well as sll and lymphoma.. now I'm told I also have hoshimotosis thyroid auto-immune, which they say came from the leukemia... Be persistent. If there are no antibodies, as I have none, KEEP ON YOUR DOCTOR!!!! HAD THE LYMPH NODE IN MY NECK NOT BEEN REMOVED AND SENT RI PATHOLOGY, IT WOULD HAVE BEEN DISMISSED AS JUST THYROID DISEASE. IF THE NODES IN YOUR GROIN AREA ARE SWOLLEN, BE PERSISTENT THEY BIOPSY IT....PLEASE!!!!!! I'VE HAD CHEMO TREATMENTS AND NONE THE BETTER FOR IT. ZERO ENERGY, ZERO TOLERANCE TO HEAT AND FIND AND PERSISTENT PAIN EVERYWHERE. YOU KNOW YOUR BODY.....MAKE THEM TREAT YOU AS IF YOUR THEIR ONLY PATIENT. PRAYERS YOUR WAY......GOOD LUCK, AND I HOPE IT'S NOT WHAT IT APPEARS :-(