Possible ITP -- not diagnosed as yet

Hi -

Apologies for the forthcoming long post.

My platelet count has been low for at least 30 years, but my doctors never really followed up until about 12 years ago. At that time at hematologist performed extensive blood tests + a bone marrow test and said the results where negative - that this was just "my" normal..

Things changed 2 years ago when I was hit with some mysterious digestive problems that turned me into a train-wreck - I lost 20 pounds (and I was thin to begin with), I suffered from bad fatigue, brain fog, depression/anxiety, acid reflux, you name it. I was placed on a gluten-free diet (though I never really tested positive for celiac) which appeared to slowly start to help my digestive problems but it was not an overnight thing.

After suffering for 6 months - a NP decided to test for different things - including autoimmune antibodies and testosterone. The autoimmune tests came back negative but it turned out my T level had dropped to that of someone who is like 150 years old. I sure felt like it.

I was then place on hormone replacement therapy (HRT) and after about 18 months o- I feel pretty darn good these days - great energy, never getting sick, and so on. However, it seems like my platelets, after being steady in the low 100's for a long time, have began to drop. Note the drop started prior to beginning HRT, in that time period where I felt so bad. They slid down into the 90's, then into the 80's, then my last test was 79.

I've done a lot of testing over the past year and the hematologist says I have a very slight, barely measurable, "possible" autoimmune issue? The vast majority of the tests have come back negative. At the same time, my WBC have started to go lower. So I'm now on monitoring - every 6 months. Another drop - and we'll repeat the bone marrow test.

I'm confused as to what could be going on. I don't really have any specific diagnosis, we are just in 'watch' mode.

My hematologist admitted she hates to start any treatment until absolutely necessary - and really hates using steroids due to the side effects. I do not know if there is more she could do to try and narrow down a root cause.

I would be "OK" with the platelets drop in general, but the drop in WBC worries me more. My Dad, who is 80 and still doing OK - went through an issue early last year where he was very sick with what they thought was pneumonia even though he did not have a lot of the symptoms like a fever, cough, etc. He was extremely weak/fatigued, no appetite, just kind of in a fog, sitting there all day. After a week in the hospital - and being treated with strong antibiotics, he recovered - but they *still* do not know what exactly he had. After hospitalization, they tested his WBC for about 8 weeks, week after week, and to his hematologist's confusion, it bounced all over, very low one week, back to normal the next. Since then he has been fine in general, appetite back, etc.

I suspect I maybe have 'inherited' something here. But his platelets, while just on the border of low, have remained steady while mine have not. So as I said, at this point very confused, and starting to become more concerned.

I don't really have questions at this point - but I would appreciate any comments on anyone who has maybe seen a case like mine. Being on HRT may complicates my situation because among other things, HRT will 'thicken' the blood, and cause RBC counts to go up. I do not know if HRT is making my situation worse by maybe changing my autoimmune function.

I do not, and have never suffered from bleeding issues. I very rarely get sick, and any colds are typically minor - I've not had any colds or anything in over 15 months.

I am not freaking out over this -- yet -- but I kind of have a bad feeling this my life is going to change, maybe a few years from now (I'm 56 years old), and in the back of my mind I feel like there is this hourglass with the sand running out.

Welcome to the PDSA. My history has some similar features to yours, though not as dramatic. Before my low platelet count was noticed I went through several years of fatigue, digestive issues, musculoskeletal pain, and other nonspecific symptoms. My doctors didn't find much, and many of the symptoms slowly resolved on their own.

The doctors tried me with thyroid hormone thinking maybe I have subclinical hypothyroidism, supplements due to several nutritional deficiencies whose origin remains unexplained, etc. Around the same time my father was found to have low platelets and other blood factors, but no hospitalization, and no diagnosis even after a bone marrow biopsy and several visits to a hematoloogist, and his values have since returned to normal. More recently, I had an abdominal ultrasound, which showed a lesion and cysts on my liver.

Nowadays I have chronically low platelet counts, but nothing that alarms my hematologist. I've never been below the safe zone (generally regarded as a count of 50 to 100), so I just get my platelet count checked, take my vitamin supplements, and don't really think much about it unless something comes up that requires a lot of platelets (e.g.: surgery).

I'm not sure about HRT or other factors in autoimmune disorders/dysfunction. Maybe someone else here can shed light on that. I hope the above (long?) story of mine is helpful.

Do you know which white cells they are that are low? If neutrophils then it could be autoimmune neutropenia, they can test for antibodies for that. If low lymphocytes then you'd probably need an immunologist to order tests to see exactly what is low and why.

ITP and immune deficiencies of any sort often go together.

Croaker:

Sometimes autoimmune problems take time to diagnose since they can develop slowly. Your platelets are still in a very safe range, so monitoring is all you should be doing for that right now. Treatment usually isn't necessary until 20k or until symptoms begin. Most do not have symptoms at your counts. Your counts may not continue to drop; platelet counts fluctuate all the time, so you might just be 'catching' them at odd times when they are lower. There have been many people here over the years who just have lower than normal counts, and all they do is monitor and live a completely normal life. They hover in the 60k to 90k range and bounce around.

Back to the autoimmune disorders...as I said, sometimes it can take a long time to get a diagnosis. I had physical symptoms for years and a few abnormal labs, but nothing conclusive. Eventually I ended up with a Lupus diagnosis. For every disorder, there are usually some specific criteria that need to be met and until you do, nothing can be diagnosed. I actually thought it was a good thing that I didn't have a diagnosis. I didn't want one and as long as my doctor kept telling me that I didn't meet the criteria, I was happy. When the diagnosis finally came, my life turned upside down and has never been the same. Things got much worse once those antibodies started showing up and causing problems.

Physical symptoms plus specific labs are usually what define an autoimmune diagnosis. You could see a Rheumatologist, but all he/she would do is monitor you. With ITP, usually the only thing required are platelet counts under 100k.

BTW - thanks for the replies everyone. It's a mixed blessing - after essentially ignoring this all these years now it's something that will linger at the back of the mind. Like Sandi, not sure if I want that diagnosis.

One day at a time. So far, you don't have anything that seems to be really serious, so just keep monitoring and take it from there.