Hello, everyone! After a long year of irregular platelet counts, my doctor recently snuck in an a test for platelet anti-bodies, for which the result was positive. She suspected this might be the case after all my clotting factor tests came back normal, but waited to test until I told her I had to switch PCPs due to my work's health insurance plan.
Judging by what I've been reading here, my counts are mild, but the inconsistency of it all and the reactions of some of my doctors have me confused and scared. Let me share the LONG story...
In 2008, I went to the emergency room with upper right quadrant abdominal pain. It had lasted for a few days, and hurt quite badly every time I bent over. A student with no health insurance, I tried every urgent care doctor I could to avoid the ER, but everyone wanted me to get an ultra sound same day. Nobody was sure I had appendicitis, but they were concerned about even the slightest chance, so off I went.
I mentioned a history of gallbladder disease in my family. Lots of blood tests and an ultrasound later, they sent me home with NO explanation as to why I was hurting. I don't have my labs from this night on hand. Eventually the acute pain subsided, though the IBS I developed in college continued. I accepted it as normal, knowing my family history of gastric issues.
Fast forward two years (last summer). My boyfriend has an attack of pain with all the classic signs of Gallbladder disease. His ultrasound was positive for stones. I couldn't help but notice similarities in my own pain, though mine was more chronic and mild. My ultrasounds had shown no stones, so I asked my PCP for a HIDA scan, which came back with an ejection fraction of less than 10%, with normal being 35+. This was the same problem my dad had; The organ had to come out.
My pre-op blood work was the first CBC I know of and have records for. My platelets came back at 90k. I asked my ENT about this casually; she wasn't concerned. On the day of my surgery, I also asked my surgeon. He didn't seem worried, either. They both told me the surgery would be fine as long as I wasn't under 60k... Or so they thought. Imagine waking up from anesthesia, thinking it's all over (mega anxiety beforehand - my first surgery) only to be told "We didn't take your gallbladder out. The surgeon had to stop because you were bleeding too much." My surgeon was very concerned and ran a battery of tests below:
Comp. Metabolic Flags: Potassium and Creatinine - Low by 0.1
Partial Thromboplastin Time: Normal
Prothombin Time: Normal
CBC Flags: WBC 4.0 / 4-11; RBC 3.99 / 3.9-5.5; Hemoglobin and Hematocrit low, just under normal; platelets: 90k (verified by repeat analysis)
Platelet function: 87 / 83 - 153
He called me the day after my surgery, quite confused, as 90k and very mild anemia (likely caused by the surgery itself) shouldn't have been enough to bleed like I did. He said just the anesthetic injections were making me bleed internally in a way that he was worried. He said he tried to manage it, and they managed to get my belly button open for the laproscope, but just the incisions and injections were causing enough bleeding that he didn't feel comfortable proceeding with the others and the removal. I was referred to a hemotologist. I think someone did something wrong while drawing blood in the aftermath of my surgery, as I grew a the nastiest bruise I have ever had, covering the back of my hand, looping around my wrist and up my forearm a few inches. I looked like I had broken my wrist, but no swelling! Or, maybe I struggled in my drug-induced panic attack, I don't remember. I just remember waking up the next day and being flabbergasted. My hemo didn't even seem concerned until my follow up two weeks later when it looked half as bad..
My hemo records are filed away, I could pull up the exacts if someone thinks it'd be helpful, but he and my PCP tested me for every clotting factor deficiency and Von Villebrand's disease, all negative. I did not take any medications besides my birth control two weeks prior to surgery.
After all tests came back negative, my PCP ordered a CBC to try to clear me for surgery. WBCs were down by 0.4, Neutrophil down by .02, but platelets were up to 131k. Huzzah?! She cleared me for surgery.
My surgeon was still cautious, so he prepared me to have my surgery in the hospital rather than the outpatient center, and wanted to keep me in observation with several CBCs to monitor me incase of internal bleeding. Going into surgery with 131k, you'd think all would be well. However, my surgery was a month after my CBC... But it was good he did: I bled like heck anyway.
My surgeon was able to complete the procedure this time, but my first CBC immediately after surgery showed a count of 74k platelets. WBC were normal (for once), but RBC, Hemoglobin, Hematocrit, and Lymphocytes were low. Neutrophyl was high. Throughout the day/night of my stay, the WBC, RBC, Hemato, Lympho and Neutro patterns stayed the same. My CBCs went like this: 74k, 72k, 75k, 79k. My surgeon didn't seem concerned about the other results aside from my platelets, as the were all pretty mild. He gave me a serious talk about whether I wanted to have children (I don't) and warned me to never, ever have a needle inserted into my spine. He told me even the anesthesiologists had never seen bleeding like mine with what should be mild numbers, and they strongly agreed on the no-needles rule.
I healed quite well the second time, after having a very good hospital stay to get me off on the right foot. My PCP didn't feel the need to have a CBC immediately.. We agreed to have one with my annual labs. In May, my counts were up to 130k; WBC were still just under normal. She mentioned the possibility of Idiopathic Thrombocytopenia, but said there weren't any tests to diagnose it. She also mentioned the possibility of a bone marrow issue, but she didn't think it was worth putting me through the test since my counts aren't life-threatening. I reiterated how frustrating this was for me.. the not knowing. Sure, my numbers look mild but I'm spooking experienced surgeons!
I found out a few weeks ago that my work was switching to an HMO, so I had her order me one last check. My platelets were at 125, my WBC still just inder normal. She tested me for vitamin D as well, which came back normal. She slipped in the anti-body test without mentioning it at first; but I got an email from her last week saying I was positive for anti-platelet antibodies and it was likely Immune Thrombocytopenia.
Some additional notes:
-My blood pressure is consistently low but not alarming, even when I was my most stressed in college; on average it's about 110/70.
-I've grown up with people constantly telling my I bruise easy; my mother was worried people would think she beat me. Nothing bled or turned into hematomas, but boy my legs were black and blue every summer. I'm kind of an oblivious clutz cause I get lost in my head, so I just figured that was it. But even my boyfriend thinks I bruise easy. Sometimes I forget how I got them; but I never know if that's spontaneous bruising, or if I just forget what happened a day or two after a mild bump.
-I have chronic fatigue. Not the syndrome, not diagnosed, but I am constantly tired. Most days, I could sleep anywhere, any time. I fell asleep in a Macy's, on the floor of the China dishware section when I was a child. I've slept through cars crashing through our apartment gates at night, and fallen asleep at my friend's parties with all the lights on and people making noise. I'm not a narco, but when my body is tired, resistance is futile. My friends made fun of me for years because I was always tired before midnight.
-I eat a reasonably healthy diet. Grains, fruits and veg, very lean meats, almost all organic. Though I can't always resist cookies and treats at the office, or friend's parties. DOH.
-I used to donate blood before my platelet issue was uncovered in surgery, but even just a pint left me anemic and short of breath for three days. All I want to do is lay around like a lump for 2-3 days.
Other issues I have that may or may not be related:
-Allergies with chronic sinusitis, dry cough and post-nasal drip (no improvement with prescription or most OTC antihistamines or nasal spray);
Tendonitis in both elbows and wrists (consequence of spending hours and hours on a PC, then taking on a career that does the same);
-Rosacea over my nose and cheeks (Malar? How do you tell?)
-Keratosis Pilaris Rubra (All over my body)
-Clusters of very tiny pin-prick-like red dots
-Prone to breaking out in a red, burning, itching rash (no hives or bumps) on thighs, knees and torso when working out; feels circulatory in nature?
-No purpura
-Lower right abdominal pain (intermittent);
-IBS;
-Abdominal pains likely related to gallbladder removal;
-Exercise/allergy induced asthma (shortness of breath from just two flights of stairs, often sit up from a flat position with my first breath a bit rattly/fluttery);
-self-managed depression and anxiety (birth control helps some);
-Intermittent knee pain (3 years of marching and dancing in high school?);
-benign floaters in my eyes (lasting for years; cataract and glaucoma screened clear);
-very, very stubborn plantar warts resistant to treatment (I've read that can also be auto-immune);
-canker sores (develop almost every time I bite my lip; sometimes large and lasting two weeks);
-cold sores (lots when I was younger, rare now)
-upper back pain and very, very sensitive hot spots where my neck connects to my shoulders.
My chiropractor and massage therapist thinks this is due to my job sitting at a computer all day, and a car accident I was in a few years ago.. But damn those hot spots are white hot when they try to get out the knots. Burning searing pain. It's a bit stiff sometimes, but mobility seems fine and xrays are clear, save for a sublux or two. I always have hard-as-rock deltoids and the muscle/tendon that connects the base of my neck to the back of my skull behind my right ear is always tender and inflamed. Occasionally I get ciatic pain, but usually this is a result of working too long without breaks. However, the are are many Yoga moves I can't do for long without my legs falling asleep quite quickly. Especially ones on my back with legs in the air.. even in a room of beginners I have to stop first. I've never counted, but I don't think it takes much longer than 30-60 seconds.
Family History:
-Mother's sister #1 had endometriosis; hysterectomy; and has very similar unexplained bleeding in surgery
-Mother's sister #3 died of hemophilia at 6 weeks old (PCP doesn't think I have that)
-Grandmother (mom's mom) has COPD, depression, bone spurs, muscular dystrophy and endometriosis with full hysterectomy (chronic smoker)
-Grandfather (mom's dad) had lung cancer (chronic smoker)
-Mother has asthma (chronic smoker)
-Great grandmother had Altzeimer's.. rest of my dad's family is sketchy; both sides of the family aren't close.
So here I am today wondering how to explain and what to ask of my new physician, whom I hope to see in September. My previous PCP didn't seem to think Lupus was a possibility, but I don't believe I've had the tests to rule it out entirely. Symptomatic google searches for different things keep popping it up, though. I've read of people here taking years to get their Lupus diagnosed; I'm very concerned that we could be seeing very early signs of a problem, lupus or not, but they are so mild that my Hemo and previous PCP didn't think it was a concern.
I've only just turned 28 and I feel like I have so many chronic issues, many of which I've been told I just have to live with. It's so frustrating. I don't know if any of my symptoms above have any connection to my ITP, or if ITP and some of the symptoms above should be pointing my doctors in other directions. I'm 5'4" at about 140lbs, so not really overweight, though I do feel out of shape and awful most of the time. I walk about a mile every day to work and back (half each way), and about 2-3 times a week I walk about 1.75mi with my boyfriend.
If you made it all the way through this post... I thank you. You win the biggest internet cookie (the tasty kind, not the tracking kind). Any help, feedback, advice... all are appreciated.
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