ITP and fatigue?

I've been searching around this forum and other platelet disorder sites, along with the vast info on the Web, to see if fatigue is a symptom of ITP. I haven't really found anything concrete and fatigue can be a symptom of hundreds, if not thousands of other diseases and/or problems (like depression).

I guess I'm asking what people think. Do others have this as a symptom in general?

I can certainly follow through with some sense of logic that if the body were in constant fighting mode with itself, that could be draining. Or maybe that simply because the body is not producing the blood "normally", this could be a correlation to the weakness, (maybe not directly, but somehow indirectly).

I had another blood test last Friday and will be finding out my counts next Friday, so keeping my fingers crossed.

I know my counts are still relatively high (100), but doing dietary measures to hopefully stop (and with any luck) reverse the drop in count.

Thanks.

This is a complex topic. A lot of doctors say that it is definitively not a symptom. An awful lot of ITP patients, myself included, suffered severe fatigue at the time of onset, and afterwards when platelets are low. I think it is the most common self-reported associated symptom for ITP in patient surveys.

For the two month period between when I started seeing bruising and when I ended up in the hospital with no platelets, I spent every bit of time I was at home crashed on the couch. I am normally a very physically active person. I walk to and from work, hike, etc.

For the next few months, while my platelets were bouncing up & down between various treatments, I could tell when they were really low by both bruising & fatigue. I finally had my spleen out, and my platelets have been normal ever since (4-1/2 years now). Although I am sometimes very fatigued, it is nothing like the level of grinding lethargy I felt then.

Hope this helps. Take care.

Some people feel it and some do not. I really only felt extreme fatigue when counts were under 15. Above that, and I didn't even know they were down. I never had low count depression, but I did have steroid induced depression.

The UK ITP Association financed a study on fatigue in ITP. The abstract of the report is here onlinelibrary.wiley.com/doi/10.1111/j.1600-0609.2011.01587.x/abstract

It concludes "Fatigue is a common symptom among patients with ITP."

An unofficial test showed that 80% (of the 74 people with ITP) who participated felt fatigue with low platelet levels. I do to.

It was a test made by a woman with ITP herself, who asked 74 people, because she felt fatigue and wondered if it had anything to do with her ITP. I believe it was in Denmark.. but I'm sorry I don't remember the site.

I've read that the platelets are tranporting some molecules to the brain. Less of this molecule (because of less platelets) makes us tired. I don't know if it's true.. but for me it is an answear I can live with.

Hello Joe, It seems like a lot of things surrounding ITP there's no definite medical agreement - SURPRISE!! My experience is mixed. With my first episode 11y ago I didn't experience any fatigue. My counts were as low as 0, treatments were pred, win-rho, IVig and platelets with virtually no impact on my platelets. So we went with the splenectomy and I didn't experience any fatigue during initial treatments or for the next 10 years.

My second episode about 1 year ago has perhaps resulted in fatigue - not extreme in my opinion but high. My treatment this time was pred (no response) and Rituxan (platelets up around 300). However the next several months resulted in high fatigue. Of course I didn't discuss it with the MD for 6-7 months but I finally decided to talk to my GP MD. My MD considered depression and sleep apnea - the chicken or egg theory - depression can cause sleepiness and lack of sleep can cause depression. Well 2 months later on an anti-depressant and on a C-Pap machine (sleep analysis says I have apnea) and I still don't know which it might be and I'm still constantly tired - but noticeably better - just not normal (but that's a different topic ! I'm personally reluctantly leaning towards the depression theory. The hard part is accepting it might be because I don't understand why I would be and I don't like the thought that I might be??? Does that make me crazy, depressed or normal????

My point is to be open to various causes of fatigue. Perhaps it is ITP, but it could also be sleep apnea or depression and perhaps other sources - the good news is sleep apnea & depression are treatable. Fortunately I'm very comfortable with my GP Doctor so I could talk about my fatigue and accepted his advise to reluctantly pursue sleep apnea (didn't want that darn machine) and Rx for depression (still really don't want to believe I'm depressed but that's probably another board somewhere

Be open to other causes - what can they hurt and they just might help - at least that my prayer!

Steve are you describing tiredness or fatigue? Fatigue for me is very different. I've described it here before but it's about heavy legs and not being able to get up the stairs for me. Or starting to do the cleaning and having to sit down because I just can't do it. It's not just being tired.

Fatigue for me is not feeling physically able to even sit up at my desk at work without feeling like I will fall over. It's jello legs, struggling to stay awake all day, massive brain fog, struggling to talk coherently, etc. At this point, ITP has nothing to do with it for me.

As usual I'm uncommon - never had fatigue due to ITP.

I'm another person, like Melinda, that has never noticed a link between low platelets and fatigue. If I can't sleep (if I'm on a high dose of prednisone, for example), then I'll feel fatigue the next day.

But your platelets seem so high to me that I am surprised you have noted any symptoms.

Like Sandy, I don't see fatigue related to platelets until they are under 15-20k. I do have other autoimmune (thyroid and others) which are far more likely to need a minor med adjustment when I notice being extremely tired.

Yes, my platelets are high all things considered, and really just under the low threshold. Although they went from 116 to 106 in the last 6 months, so not a positive improvement, which worries me.

I am certain that my fatigue could be from many other various causes. I don't know much about ITP, as I think the rest here do who have been coping with it much longer than I have, and of course with much lower levels, and with all sorts of treatments to boot.

I guess since I am still relatively new to the whole ITP thing, I'm just asking questions to learn, study, and such. I guess since some people do have it while others do not mean it is not necessarily a symptom of ITP for everyone, or that it could come from other causes. And for me, since they aren't that low, it may not have anything to do with my ITP. I guess I was hoping I could rule it out as a cause, but since it sounds like it can be for some, I won't.

I appreciate the education of this, since I don't know much about it.

Joe - a drop from 116 to 106 in six months isn't anything to worry about. Counts can and do fluctuate that much in a few hours due to constant production and destruction.

I was double whammied with fatigue. Went through a very stressful situation shortly before ITP diagnosis, along with two depression phases. During the depression my counts were as low as 2k and bounced around quite a bit. Fatigue is a major symptom of depression. Fatigue can also be from long periods of stress. Long periods of stress can cause depression. Fatigue in my opinion, triggered my ITP.
High stress can wreak havoc on the immune system. Check out stress and the immune system at this link.
immunedisorders.homestead.com/stress
Stress has passed the common cold as the most common health problem in America. There are times I just feel like being in a bad mood, the littlest things cause unnecesessary ANGER and if it lasts for a few days, I can really feel it. Fatigued. Once I learned to accept ITP, roll with the ups/downs and control anger/stress, things started improving.
Stress releases Cortisol in the system, increased levels of Cortisol depresses the immune system function. The part of the immune system most sensitive to the effects of Cortisol, are natural Killer cells. Immune system resistance plummets. A serious illness is often proceded by a major cause of stress. Which leads me to believe "Stress" triggered my ITP.

I've had fatigue since being diagnosed with I.T.P. the past 1.5 years. A week ago, a blood test showed B12 levels very low. Had a B12 injection and my energy level went back to normal.

Good luck in finding out what is causing the fatigue.

I'm sifting through old threads looking for discussions on brain fog and fatigue. I'm not currently suffering with either as much however I am now reflecting on what I've been through the past few years and it's so disturbing to think back to when I was so handicapped by so much exhaustion. I still have good days and bad days but I no longer feel like I'm struggling as intensely as I had been. Looking back now, I feel like I spent a lot of my time in a mental state similar to how you would feel if you were woken up by a phone call in the middle of the night. That groggy mental struggle for coherence. I remember googling extreme exhaustion, trying to figure out what was going on. I was so out of it I felt like a kindergartener setting out to write a thesis paper. Everything was sooo difficult.

I still don't know the exact cause of my exhaustion but I've learned to accept that it is a sign that my body is not well. I have a hill that I need to walk up on my way home from work. If I'm feeling fine I barely notice the slight incline, if I'm not doing so great I feel the weight of the world on my shoulders just approaching it. I use this hill as a tell, it helps me gauge where I am physically. If the hill feels like a challenge I know I need to rest more, eat better and remind myself that things will feel more challenging during this time and to go easy on myself. I think all the changes I've made in my diet and lifestyle have made me healthier in general so the bouts of exhaustion are less intense.

One easy thing that helps me, that I do right away when I'm starting to drag is I make Carmen's Juice. My landlord made it for me at first. She said it's good for the blood. I was skeptical but it cleared up some stubborn bruises when I first started drinking it. I juice a bag of carrots and a beet (all organic) and then I put that into about a litre of store bought fortified o.j.. I'll drink 12 oz's first thing when I wake up in the morning. Maybe some later in the day if I feel like it.

For me, it's been helpful to incorporate a tell, like the hill, as a daily check on where I am physically and then to have a reserve stock of things I can do to make your life a little easier when needed.

I was diagnosed with ITP about 24 years ago. My platelets average around 60 to 90,000. So long as I get my 8 to 9 hours of sleep I feel prety good. But I can't keep up as well as others if I don't get those extra hours. However last summer I noticed I was so physically tired I could barely get up the stairs to go to bed. I was absolutely exhausted. At that time I was also due for my 6 month platelet check. They were 44. Then I understood what real fatigue was.

my son Jarobi (17 now, diagnosed with Chronic ITP 2 yrs ago), has almost no ITP symptoms, no bruising or bleeding or any visible symptoms at all, and his platelets are normally around 30, haven't been above 40 since 2010

his ONLY symptoms, are tiredness, fatigue, headaches, sometime dizziness at times
we are told theses are not ITP symptoms at all, but he has ITP......
we originally went for test - due to him sleeping for almost a week solid - he could be woken up at the, but not much moe than open his eyes (in 2010)
this was after a already bad sleeping pattern - due to in my opinion to much playing computer games all night.
since 2010 he find it hard to stay awake ore than about 5 hours at a time - day or night
but can easily sleep for 20 hours

we are seeing another physician to look into his symptoms - in case of a secondary illness being involved

Jarobismum, has your son had his Thyroid checked? That can cause some of the tiredness issues.

Joe, I am constantly tired & can sleep hours on end. This is my 2nd occurrence of ITP. I was first diagnosed when I was 26 & was treated with Prednisone. I was on it for a year until my platelet count remained within "normal" range. Last November, the ITP returned, with my lowest platelet count of 2! I was put on Prednisone again, and my count has gotten as high as 192, and Prdnisone was stopped, however it dropped back down to 119 the following week and has remained below 150 since (and I have not gone back on the Prednisone). I find that I suffer from fatigue & tiredness all the time.