Relatively newly diagnosed and thankfully improving though with no clear answer as to why. A little over two years ago is when acute symptoms started though remember having some sooner, or I associate them but may be related to my recently discovered allergy.
I started a new medication, trazadone and did not react well, general nausea that did not go away and in general feeling bad, took for 4-5 days and stopped. Felt better and a few days after went hiking with a gal. Not a great day, during wildfire season and was quite smokey, but cute gal. By end of hike was light headed and not feeling great but nothing I didn't chalk up to the smoke and exertions. Next morning woke up feeling what I imagined a heart attack felt like, intense chest pain and heart palpitations, left side was weak and loss of some sensation. Did not worsen and went to doc next morning. Took blood work and did heart tests, I did have lower platelets in that test ~90, and I felt woozy like I had given too much blood. Went through cardiologist but heart is healthy, with platelets dropping was referred to hematologist. Through him was eventually diagnosed with ITP. My platelets continued to drop till this last spring to low 70s and since them has rebounded to 138. Symptoms I regularly experience and associate: light headedness, cold extremities, fatigue, brain fog, weakness, shortness of breath, temperature intolerance (easily cold or hot)/thermoregulation issues. While not directly associated I have regularly experienced diarrhea since around this began as well, though may be earlier.
As I have been pursuing things I discovered I have a significant mold allergy to Alternaria tenuis, recently in last two months started immunotherapy treatment. Started treatment long after the platelet turn around though and does not appear as yet to be improving or harming things. Other things that I have noticed and additional history; I have had gastro issues (heartburn mostly but quite severe) since I deployed to Afghanistan 2012/2013. I have discovered I have hiatal hernia likely from an injury sustained. While deployed I took doxycycline and took primaquine at end of deployment. I feel strongly that my GI issues are related to my ITP, in general noticing GI distress and ITP symptoms correlating, and as part of treatment for GI was prescribed double dose of omeprazole. During initial 8 week treatment is the only time between initial onset and this springs turn around that my platelets improved, and dropped immediately after stopping. I also noticed symptomatic improvement. Right before my climb began again this spring I started taking omeprazole again regularly and have since. I know its not supposed to positively affect platelets and have ruled out any GI issues that would negatively affect this such as gastritis, though have not had colonoscopy so UC is possible. No food allergies confirmed, but after some rabbit holes I do seem to be inflamed by foods high in histamine, tomatoes and alcohol especially, with bananas being an exception that usually helps instead, and these are hardly uncommon heartburn triggers so may be nothing.
I thankfully did not get to requiring direct treatment and my diet long before this started was quite good consisting of whole foods, I'm a big gardener and often grow 6 months of my own vegetables or more. But I have been more cognizant and can always adjust things. I reduced and for about 6 months eliminated all drinking before starting again. I take b12, magnesium citrate 1-2 week, citracal + 5/week, and a few months ago started taking a fiber supplement which has eliminated the diarrhea. I have ADHD and have been taking my medications on and off again, as I have noticed it sometimes contributes to worsening some of my symptoms, mainly the cold extremities, but I have dialed the dose in to not seem to inflame it as much. I also take antihistamines when I go in for the shot, allegra currently and that seems to work best so far.
As I have started immunotherapy for the allergy I have noticed some increased spikes in some of my symptoms immediately following like cold extremities, tight chest, light headed. It is quite possible that some of the symptoms I have associated with ITP may be more closely related to the allergy, though also could simply be closely tied to each other. For a few years i did take Benadryl as a sleep aide but stopped a few years before this all started. Its possible it held my allergy in check and once stopped started building in my system. I do recall times before ITP started having sudden onsets of lightheadedness and weakness while working outside but mostly attributed it to being out of shape at the time. Cold extremities though is only with onset that I can recall.
I also have been dealing with for last 2ish years tendonitis, left and right arms though right arm mores severe as I had injured my elbow and wrist in2019 and never fully healed. I also have a mystery tightness in my back knees and lower legs that started a little after this and has not been diagnosed and comes and goes in severity with stretching helping. I have made progress but have been resistant to healing even for a tendonitis injury.
Would be very interested to know if anyone has had GI and ITP issues that seem related and have found ways to improve it. Same for allergies. While my Hematologist is great, dealing with specialists is frustrating, they don't want to see the human body as connected at all and my primary care is fine but overworked and mostly a referral mill for me and occasional check up. I strongly wonder if the antibiotics while deployed contributed. I have also read some things on histamines in food and am considering trying that to see if improvement occurs.
In general my blood work is good, though I seem to have naturally lower hematocrit and hemoglobin levels, they have stayed consistently just below the norm line to just on it, most recent is a little higher but time will tell if that is a trend or not. Since May my Abs immature grans are slightly elevated .1 K/uL, they were elevated when initially started treatment for a few months before going down till May this year. My SGPT/ALT has also been elevated since May, 69 IU/L. It was also in beginning and also went down, no cause determined by GI doc. Is possible since the mold is mostly active during warm season that it is related to exposure to it, though doesn't explain lack of elevation in 2023.
I'm sure I'm forgetting something. I'm glad my situation has improved though frustrated that there is no clear reason for it improving, last winter was miserable. Appreciate any advice or suggestions.
I was able to go to the editor too. And thank you for all you do!!!