Fatigue and ITP?

Hi all,

I was recently diagnosed with ITP, and it has been very comforting reading everyone's stories on this discussion board. My story is not nearly as traumatic as some that I have read, but I have had some challenges that I was hoping to get some insight on.

I am a former competitive runner (currently just run for fun now), and I began to notice that I was feeling weaker and more tired than usual. So, after my blood work showed low red blood cell count, macrocytosis (enlarged RBCs), and low platelet count, I was referred to a hematologist who diagnosed me with ITP. He assures me that there is nothing else wrong with me, but I continue to feel weak and tired even with a full nights rest. My platelet counts have ranged from 100 to most recently 60. My hematologist was concerned that my counts continue to drop, so he has been checking my counts on a weekly basis for the last three weeks. I have continued to try to keep my daily running routine in this process, but this morning I had to stop earlier than normal because my legs began to feel too weak to continue. So, I ended up walking home the rest of the way. I can't help but wonder if something else is going on. Are there any other tests that I should ask for? And have any other athletic folks experienced anything like this while working out? Would my running affect my platelet count at all? I have asked my doctor these questions, and he tells me that I can continue running and that it has no impact on my platelets, but I was wondering if your doctors had given you any other information.

Sorry for the million questions. I'm just a little scared at this point. I appreciate your time and any advice! Thanks!

My hematologist has told me stress alone can reduce your count. But didn't say by how much.

If you go to the 'personal stories' section, as I recall, someone has used stress reduction methods successfully, albeit combined with other methods as well. Look for story 'Success Story'.

Hey,
I'm no runner or an "active" person however for work I do have to do a lot of running around including running a steep set of stairs countless times a day. I do notice when my count is lower I do get more tired than normal and sometimes it does knock me for six. When I was first diagnosed I could sleep the clock around and some days I still could. It's just my way of dealing with it I guess. Obviously I'm no Dr but don't let it interfer with what you love sure you may have to cut your runs shorter but don't give it up.
It's a scary thing to come to terms with and we all have good and bad days but you'll learn you limits soon enough. Don't be scared, we're all in the same boat xx

Fatigue is quite normal with most auto immune diseases. Your body is fighting itself. The lower my platelet count is the worse the fatigue

Thanks everyone. I went back to my hemo today and my count was 72, which is the same as last week. I'm counting that as a positive since it had been going down by 10 every other time I came in.

That's interesting that stress may play a role in platelet counts. I had always wondered if I was stressing my body too much with exercise. I'm 31 years old, and it sucks not being able to do the things I used to do without worrying and not being at the same athletic level I used to be. This morning during my run I started to feel really weak in my legs, but I don't know if that was attributed to the ITP or to pent up anxiety. I sort of feel like I'm walking on eggshells anymore. I guess my worst fear is that my counts go super low, and I start to bleed internally. I know that's rare but the thought just scares me.

I've had ITP since 1989 and have yet to bleed internally except for the bruises.

Some get exhausted, fatigued, really tired when count is down - I haven't noticed that in myself though.

Your mind is probably running faster than your legs - we all do/did that. I was in a "remission" when my count was going between 85k & 125K for at least 10 years. A tetanus booster then dropped my count but I'm back in a "remission" again. You will learn not to let this run your life. We moved to Tokyo shortly after diagnosis & me being on 60mg of prednisone.

I never gave a thought to not taking tap dance classes - now I've moved on to clogging which is much more of a workout than tap - or exercising. I did give up skiing but only because I was afraid I'd break a leg or arm.

It's normal to be scared, nervous - but you will get over that.

Keep us posted!

You said that your red count was low...was that treated at all? I would suspect that could be the primary reason for fatigue and weakness in your case.

As for low platelets causing fatigue, everyone is different. Some do not feel fatigue, and some do with low counts.

Fear is normal, but bleeding internally is very, very rare. Many people handle low counts well. Since you are being monitored, you would most likely be treated before they became dangerously low. Many of us have been under 5k and are fine.

Just as a quick update; ironically, I had a bad fall when I was running this morning . My legs gave out on me less than one mile into my run. My knees and hands got the brunt of the damage, and I was able to avoid hitting my head on the pavement. Immediately after though, I got scared because my doctor told me to go the ER if I ever fell hard and I was bleeding pretty heavily from my hands and knees. Well, I didn't feel bad enough to call 911 (which in retrospect sounds pretty dumb), so I called to speak with the on call nurse and explained my ITP/fall situation. She triaged me and told me to call my hemo later today. I called my hemo's office and asked if they could test me for anything else, because I continue to get weaker. All this time I have been telling myself that this weakness is just psychosomatic based on what my doctor has told me, but, after today, I'm more concerned that something else is wrong.

Sandi-No, no one has ever been able to explain to me the reason why my RBC counts are consistently low. My hemo said that as long as my hematocrit was normal, then there was nothing to be concerned about. I did have a bone marrow biopsy done, which came back normal. Not sure why I continue to have enlarged RBCs and lower than normal RBC counts along with low platelet count. The scarier thing is, I don't think my doctor has a clue either :side:

Not sure I would have called 911 with just my hands & knees messed up. But it doesn't sound right that your legs just gave out like that - glad you are going to get checked. Maybe this is an issue for your PCP not hematologist?

That is a good point. I get confused as to whether I should go to my PCP vs hematologist. It always seems like my PCP ends up referring me someplace else when I go see him. With my insurance, I can see a specialist without a referral from my PCP, so I wonder who would be the best kind of doc to see for this?

Know what you mean - it seems like all my PCP is there to do is give me my yearly "wellness" visit. My HMO lets me see a specialist without a referral, within reason as I'm sure they wouldn't let me get a hold of the brain surgeon myself

I would have no idea about which specialist would be best - neurologist? Maybe that's why the PCP would be a good start.

NYS:

I wouldn't have called 911 either with scraped elbows and knees. Your doctor wasn't specific enough with you. Hitting your head when counts are low can be dangerous, but it doesn't mean that you will definitely suffer a life-threatening injury. If in doubt, get help. Spontaneous brain bleeds can happen, but they are very rare and usually only if counts are under 10k. The symptoms of that are the same as a stroke....vomiting, loss of speech/slurring or use of limbs, sudden thunderclap headache, etc. Many people here, including me, have had counts under 5k and have not had any serious bleeding. I have only ever seen a handful of people who have had strokes from low platelets and have actually seen more people here have strokes from treatments. I know that seems odd, but people with ITP are actually prone to clots as well as bleeding. Sometimes, a person can have gastrointestinal bleeding, but you'd probably notice blood in urine or stool.

I remember feeling weak also when my counts were low, but usually only when they were under 10k. Honestly though, I'm not sure if that was due to anxiety or not. Anxiety can do a number on the body and cause you to feel shaky and weak. It's also possible that you are feeling weakened by the low red cells or, you may possibly have a vitamin deficiency. That is common. Have you had your B-12 checked? Large red cells can indicate a B-12 deficiency. Steroids can also cause weakness and I can't remember if you had any steroid treatments. I can't scroll down far enough and read it because I'm only seeing six of the last posts. There are many reasons and it could take a while to figure it out. In the meantime, try not to worry and breathe.

Thank you for the wonderful info Sandi. I'm very new to this and am still learning not to panic about everything with this diagnosis. It's very comforting to hear from others who have more life experience dealing with this than I do. I've tried to do research online, but it's overwhelming and depressing at times. I talked to my doc today about my continued fatigue and he ordered some more blood tests for Vit D and thyroid. Interesting to note, the hemotologist that I saw before I moved told me I was copper deficient, and he seemed to think that was causing my low RBCs and platelet counts. However, after taking the max dose of copper, my RBC & platelet counts never got to normal and I continued to be copper deficient on my blood tests. No clue why my body didn't absorb the copper... I have had my B12 tested before, which was normal. I feel like a medical mystery. I'm actually starting to wonder if this is diet related. I'll admit I do drink a lot of coffee and use aspartame on a regular basis, which I've read could decrease platelet count. Other than that, I think my diet is really healthy with mainly veggies and no processed foods.

I have been fortunate enough to not need steroid treatment for ITP since my lowest count has been 61k. I've read many stories on this board of people in much worse circumstances than me, so I feel bad about even complaining. You all are definitely in my thoughts and prayers!

Don't feel bad about complaining. That is what we are here for. There is a lot of incorrect information on line, so you have to watch what you are reading. Most of the credible sites are probably over your head at the moment...it can get technical. Stick with the articles here, there are many.

Many people with ITP also have absorption problems. I'm one of them. I take many vitamins and minerals because I am always low with certain levels and they drop as soon as I stop taking them. It sounds like you have a healthy diet for the most part. It certainly can't hurt. Aspartame is known to cause a lot of health problems and although that is controversial, it can't hurt to back off of that for a while.

It might be helpful to know that although you do not have a 'normal' platelet count, a count above 30k is considered to be a 'safe' count. A count in the 70's is actually pretty good and most people would have few restrictions with that count.

That's really interesting about the absorption problems; I had no idea there was a correlation with ITP. I'm really interested to hear how my Vitamin D level test turns out. My multivitamin has 250% of the recommended daily intake, but, like my copper intake, maybe my body isn't taking it in.

Speaking of copper, I know I should ask my doctor this, but I feel like I bothered him enough last week. I ran out of my copper pills last week and haven't purchased anymore because I am wondering if it's even worth taking these anymore? Seems like they haven't done anything to improve my cell counts. Any thoughts? I'll ask my doctor later, but if anyone has any thoughts I'd appreciate it!

Absorption problems are common with any autoimmune disorder, not just ITP. There is a Vitamin D deficiency epidemic, so don't be surprised if yours is low. Mine has been low for years, I have a constant script for it. I had been taking OTC Vitamin D for years but my level was still low. The 800 IU's that I was taking daily didn't cut it.

I'd ask your doctor about possibly getting a liquid copper supplement. You might have better luck with that. I don't know if it even exists, but it might. Or, you may need a higher dose. I've been wanting to get mine checked too. I have neurological problems that no one can seem to diagnose and a copper deficiency can cause that, along with hematological problems. You really should follow up on that.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2712481/

Liquid copper exists; just looked it up.

Great! You're a wealth of information, Sandi. Thank you so much! I'll look for it this afternoon at my health food store. I'm packing up for a trip to San Fransisco tomorrow, and I'll bring this with me. I'm super nervous about this trip because this is my first trip since being diagnosed. I get nervous flying anyway, so this just adds to that. I'm really trying not to let this diagnosis turn me into a hypochondriac. I was thinking about trying one of those natural calming supplements but wasn't sure if those would affect my platelets. I'm sure my anxiety over traveling doesn't help them either though, lol.

Just stay calm. What is the worst that can happen? If you start to notice bruising or abnormal bleeding, I'm sure there are places to get checked. Low counts are not always an emergency. Forget about it and have a good time.

Be sure to have your copper levels monitored soon if you are self-treating.

Supplements may or may not affect counts. Depends on what is in them.

Hi Sandy,
If you don't mind sharing, what types of supplements do you take? I have low platelets in the 108 and 145 range and recently had a bad scare with internal bleeding - black stools - and lots of blood loss after taking Excedrine. Is there anything besides aspirin and advil type meds that we should look out for? I've just started a B12 supplement and take Vit D. I've read that we should stay away from blueberries, tomatoes, garlic, and onions??? It's so overwhelming. I have a head cold and am afraid now to take cold meds even the homeopathic ones. Is there a resource that you recommend that lists vitamins and other meds to stay away from? I have known about my low platelets for years and have had them monitored, but this was a big scare for me.
Thanks so much, i am so happy to have found this discussion group.
DM