fatigue/conference

I am going to the PDSA conference in Boston tomorrow. I'm looking forward to going to the talk called "Why am I so tired"?
My hematologist says fatigue is not associated with ITP but I know when my counts are low I am really tired all the time. So, I'm hoping to learn something and maybe have something to take back for my hema to read. She was even going to go to the conference but then she ended up being on call this weekend.

I think it has to do with serotonin transport. I also have major fatigue when my counts are down. I know many live with counts around 30-50 but at those counts I cannot function normally or even close to it. Maybe it's not platelets alone causing my fatigue but the underlying disease (SLE).
Have fun at the conference - I've been twice and it is so valuable and also a blast. Look for Kim on the dance floor.
Erica

Hi folks,

I'm completely new to this whole issue having been diagnosed in February this year with a count of 24.
I am finding it very difficult to understand the sheer volume of information and admire your level of knowledge and experience.
I have nothing to add, yet anyway, to any of the discussions as I am only a beginner but I am grateful for the chance to read about what is going on in US.
Here in Scotland things run at a different pace and I am basically having to go it alone and find information where I can.
I know Boston quite well and hope the conference goes well for all those who can attend.
Look forward to reading about discussions etc.
Best regards
Eric

Thanks, Eric. This forum is great for helping us feel less alone no matter where we live. Keep reading and join in when you can, everyone's experience is so different.

I do not understand that the Doctors do not associate fatigue with ITP. One of the chief complaints I hear is the problem of fatigue. I hope to hear some answers that are given at the conferrence.

Hi Eric - sorry you have to be here, but Welcome!
My husband and I were recently on vacation, met a couple from Scotland - he had such a great sense of humor!

The only thing certain about ITP is that nothing is certain - my opinion. Fatigue may be a symptom for some but it isn't for all - I'm saying that because I don't get fatigued if my count is down, if my TSH is goofy or I'm not sleeping them I get tired, wouldn't say fatigued.

Can't remember where I saw it on this site - but it didn't seem like platelets carried much serotonin.

Dru have a super time at the convention - can't wait to hear what you learn!

Hi,
It was really nice to be at the conference. I was really tired yesterday and was not able to stay as long as I wanted. But, it was great being with so many people with ITP and hearing all of the different experiences. The talk on fatigue was interesting. The doctors know from experience that many patients with ITP have associated fatigue. They said it was multi-factored as far as cause and includes:
-inflammation
-lack of serotonin as 90% of serotonin in the body is carried by platelets
-underlying factors that many of us have especially thyroid disorders and lupus
-depression/anxiety that comes from dealing with a chronic disease
-Dr. Kuter said only half joking that doctors cause some of our fatigue, having us come in for weekly blood counts, waiting in waiting rooms,driving to appointments
-many of the treatments cause insomnia and or fatigue, esp. steroids. some people have fatigue from promacta or Nplate.

To deal with fatigue they recommended that we re-think lifestyles. It is very important for us to get some exercise and activity of some kind. Diet is very important, eat healthy foods and do not get overweight. If fatigue is very severe get tested for food allergies, and be sure you are not anemic and that your liver function is checked (which your doctor can do with a blood test).

Most serotonin is actually in the gut. This is a good basic description. Hit the links in the left hand menu to see it through.

www.chm.bris.ac.uk/motm/serotonin/home1.htm

Personally I think that they are slowly coming to the conclusion that serotonin has little to do with fatigue in ITP. All autoimmune disorders cause fatigue in most sufferers and I suspect that the explanation will be something to do with the autoimmune process common to all the disorders.

Edit: Actually re-reading what you report that they said, I'm disappointed.. they don't seem to 'get it'.

This is what the pdsa says about platelets and serotonin:
www.pdsa.org/about-itp/disease-details.html
Platelet Function
Platelets are very active particles in the blood,...

Platelets also transport other substances throughout the blood stream. In the body, 2% of the serotonin, a mood elevating neurotransmitter, is stored in platelets.

Ann, No I really feel like they did "get it". They gave all these various reasons that could be contributing but also said it could be something that we just dont know about (like what you said some intrinsic factor associated with autoimmune disorders). They acknowledged that fatigue can be a big factor in ITP and can be very difficult to deal with. They were all very empathetic I felt, but were trying to give some concrete possible reasons because people really wanted that and were asking specific questions. There were also some people with ITP there who reported feeling much better after different lifestyle changes like special diets, avoiding triggers, finding food allergies. Of course these would not apply to everyone.

As far as the serotonin, they did not feel like that was a big part of the problem, but could contribute. Dr. Kuter did say that 90 percent is in platelets and I see that is different than what is reported in the PDSA website. I must have heard it wrong or misunderstood, definately could happen!

Years ago, I was trying to research the low platelet/serotonin connection and just couldn't find enough evidence that it contributed to fatigue. At the time though, it was the only explanation there was so everyone wanted to believe that. I didn't. If it did make a big difference, then taking an antidepressant (SSRI's) should have made a difference in energy levels and I just didn't see that happening.

The other factors you mentioned actually make more sense and I am glad to see those acknowledged.

I think Sandi makes a good point (as usual). There is no doubt in my mind that fatigue comes with very low counts, but, whether that is caused by the lack of platelets or something else, or some combination of something elses -- the meds, the mental fatigue caused by very low counts, etc. -- I can't say. In my experience, the fatigue comes only with very low counts, say 15 or below. I sometimes see posts saying someone is fatigued with counts in the 40s or 50s; I don't question the fatigue, but in my experience the counts are not the cause. Of course, everyone is different.

I was the same way - only had fatigue with counts under 15. It was more than just being tired, it was not being able to stand up without feeling like I would fall over...total exhaustion. Above those counts, I wouldn't even know they were down.

I seem to have fatigue when my counts are dropping, even when the absolute levels are totally acceptable. I think it might be because the SLE is acting up. The dropping counts might be a symptom not a cause.
Erica

something I learned that I never even gave thought to before is kinda like what Sandi said. Fatigue is something totally different than just being tired. For me it even goes into a mental tiredness. It's so much more than just feeling tired. I did notice it with low counts like you all mentioned, but I also notice it when my counts are on the down-slide. Like as they are dropping.

That's why it sounds as though they don't understand. It sounds like they are describing tiredness and that isn't it. Not wanting to do stuff might be depression and tiredness. Wanting to do stuff and finding that your legs feel so heavy that you can't get up the stairs without pulling yourself up by the banister is fatigue. Or what I sometimes get, walking around quite happily and then suddenly coming over all hot and weak and having to sit down is fatigue (it's not the menopause either, I'm past all that).

By the way Dru. He might have said that 90% of serotonin in the blood is in the platelets rather than 90% of what's in the body.

My hematologist on my most recent visit talked about fatigue being acknowledged as part of ITP.

While I do get fatigued with low counts, I get fatigue with counts in the 40k-50k range as well.
My personal take on this? There is a war going on inside me....it is not 'normal', it is constant, and it does wear one out.
I take Promacta to increase platelet production. Those new platelets are not made by little elves in a hollow tree, my body is being forced to work overtime to produce more platelets at a faster rate than normal. At the same time, platelets are being tagged and destroyed at a rate far beyond normal....non-stop. And as the saying goes; There's no such thing as a free lunch.
In all respects, I am exceeding the design parameters of my body. Without any let-up.
MY BODY SHOULD BE FATIGUED!
Heck, I get fatigued just thinking about it.

.

Just as many people who do experience fatigue don't experience it with ITP if that makes sense.

I think generally its not understood that much largely due to its lack of being able to test scientifically.

But I never know if there is direct link with steroids and fatigue rather than the condition. I barely know when my platelets are dropping. If we are exceptionally tired then you would do well to ring Hemo's then and get tested.... then it would add to all research about it. Help to make it a fact rather than labortary speculation.

Fatigued and very tired are subtly different. Next time you (whoever you are)are fatigued ring the hemo's and get tested so it can all be fact in due course.

Thanks Ann, that makes sense that 90% of serotonin in the blood is in the platelets, that must have been what he said and I just misunderstood part of it.

I feel like we are all different. Not everyone has fatigue with ITP, but many do. The doctors were basing results on questionnaires filled out by people with ITP and fatigue was noted by a certain percentage (something like 80%), but that means that for the others fatigue is not a problem.

For me it is like what you said Ann, and Server, it is more than tired. It is not like the tired I get from a long day of work or exercising. For me I feel like I am underwater and cant swim up, no matter how hard I push I can't get any energy. I get it when my platelets are falling and when they are under about 40K. I liked the way you put it weirdjack, our bodies are really busy making and destroying platelets, it has to take a toll.

I had ITP 30 years ago -- had my spleen out, and my platelet count has been in the 50K+ range. So everyone has been treating me as if I am "cured". But I have been bone tired for the past 30 years. I've had everything checked, thyroid, lupus, fibro, etc. I recently was diagnosed with hereditary hemochromatosis, and even though my ferritin isn't high, I just did a therapeutic phlebotomy. Just to see if it would help. The phlebotomist said that most people give a unit of blood in 15 minutes, it took me 45. She said that my platelets were "sticky" since I have no spleen. "Sluggish blood". So -- do I still "have" ITP? Can that be the cause of my fatigue? Not that it would make a difference, I guess. But it would be nice to have an explanation.....

I try to be my normal analytical self in viewing my battle with ITP. I would like to call it a battle, but the fatigue does not allow me to fight back the way I want. I would like to scream about it but I am too un-energetic. One of the things I do is watch the rate and viscosity of my blood when my blood is being drawn. When my platelets were down around 16 K the vials seemed to fill instantly. My view is that the lower the counts the blood may be quite thin. It then may not be caring everything it should as well as it should. Or it may not allow the nutrients to be taken and absorbed properly.

Low viscosity may also be deceptive in that it may help keep your blood pressure lower, but may still be rushing through you system and now allow for that slight amount of time for things to be absorbed. Thus leaving you in a catch up mode.

Plus once the platelets are attacked by the antibodies, you are then caring a lot of useless platelets in your system.

I am a geologist and have been around a lot of well drilling. Too much viscosity is bad, and too little can be disastrous. Some one with more knowledge of the the total blood chemistry, might be able to fill in the blanks.

But for us it makes us feel more fatigued as our platelet levels drop

CG:

That's quite a theory you got there.

cgoewert,
good theory, and testable! How would you test blood for viscosity? That would be the first step - verify whether low platelets correlates with low viscosity. It could be the tubes fill up faster because normal clotting slows it down sometimes?

Then, if low viscosity is associated with low platelets - are there other conditions that affect the viscosity of the blood - and do they also result in fatigue?

I think sometimes when scientists from different fields put their heads together we get breakthroughs.
Erica

Platelets aren't useless though when they are tagged for destruction. As I understand it, they still work until they are filtered through the spleen.

As for viscosity...don't know. I'd have to think about and research that one.

I have to say that this is the one topic that bugs me the most. I suffer with fatigue so often when my counts are up and down. Dr.'s need to get this into their heads. Make them listen!