ITP Support Association
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exasperated

went to the Dr. today and was told that fatigue is not a sign for ITP well I find it amazing how I only started getting tired like this with low platelet count. What is the point of having signs and symptoms if they tell you that the symptom you are experiencing is probably not because of the low platelet count. I give up I have been feeling very drained lately and she tells me that it is probably because of something else but does not know what. Then you are asked if you have blood in your stool or urine, have any bruising etc. and when you comment that those are signs and symptoms just like fatigue they get angry.

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Time to look for another Dr. I say! This is the last thing you need to deal with especially given the unpredictability of ITP. An angry doctor has NO room in your journey to your well being. Take it from me and many people on this forum.. Fatigue is definitely one of the symptoms. You're not crazy or making this up.

From one drained person to another.

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Thank you letting me know I am not crazy. I can not look for another Dr. since there are not any taking new patients but if my Platelets go down again she will have to refer me to another hematologist for mine has moved. This Dr. I see is great for getting me into see referral Dr.s very fast so that is at least good.

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I don't get fatigue myself, but it's really common, you see people always commenting about it online. There is apparently no medical reason that the doctors know of, but you know what, they don't know much about ITP either do they ;)

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Well platelets do carry us it melatonin? That helps with mood so I would say that having low platelets would be more susceptible to fatigue -I definitely have suffered from it and also more susceptible to colds etc than I ever used to- vitamin d might help fatigue -I totally understand!

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Platelets carry SERATONIN which is the substance in our bodies which gives us the feeling of well being.

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I suffered from terrible fatigue until my count was a constant 40+. My consultant was great... and although it's maybe not on the symptoms list... she recognised it as a fairly common complaint.

In terms of your GP... take her some information from the ITP site about the links to fatigue. The GPs at my own practice have been very up front in telling me they have limited knowledge of the condition... however one did go and do some research.

You are not going crazy... and hopefully when your count picks up... the fatigue will disappear xx

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I Have never had fatigue with my ITP. Even when I was admitted to hospital age 60 with a count of 2, I felt 100% normal. I got up at 8 each morning and got dressed, would have a walk round the hospital, visited with a friend who coincidently was in at the same time, would meet my wife in the coffee shop. I just made sure I was at my bed for the doctors rounds. The doctor said he was happy to see me up and dressed and not lying in bed thinking I was ill. I was discharged a week later when my count was about 12 and I had no new bruises.

I am not suggesting that others don't have fatigue it is just to show that the symptoms and treatments for ITP is so different for all of us.

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Your hospital experience sounds similar to mine. My hematologist encouraged me to move around and only lie down in bed when I was feeling sleepy or during some intervention. He kept telling me I was not sick. That helped.

Having said that, being hospitalized for more than two weeks did affect me psychologically and by the fag end, I was stressed out, bewildered, weepy, and unable to sleep... all contributing to fatigue.

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Fatigue is an issue with me. I also feel light headed. Been lucky so far as the lowest platlet count to date has been 36,000. Been staying in the 50,000-65,000 range. Anyone else have issues with being light headed?

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I get lightheaded this is a sign I will have a nose bleed getting to know my itp symptoms well enough now :))))

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Tell your doctor when they get itp they can comment you have an invisible illness it can be a very lonely place and you need to feel supported ....I too have symptoms of fatigue,headaches,achey bones list can be endless never had any of this before my hematologist tells me to listen to my body same applies to you, you can ask for another doctor take care this site will help you through.

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Tell your doctor to read the European Journal of Haematology 86 (420), and there is the article explaining that fatigue is indeed a symptom. Google Fatigue and ITP yourself, and print off the results page for the Doc to look at. There is lots out there about it.

I had a junior doc tell me it isn't a symptom, so I gave her the article to read. Off she scurried to her Prof who said it is a symptom, but not for everyone.

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Find another doctor. I can relate, that is how i discovered my ipt. I was on prednisone for a while. Which is suppose to raise your platlet count and it also give you fake energy. Because i could not sleep. Had to take something to sleep. I had a friend who needed a blood transfusion. Things got really bad.

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Hi ggw. I was just wondering if you have had your iron levels tested? When I was first diagnosed as well as having a lowered platelet count I also had an extremely low iron level. Once my low iron level was corrected (it took 9 years) my fatigue has halved... I still get tired but it's not constant like the bad old days. :)

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If a doctor is arguing with you that fatigue isn't a smytom of Itp then it's time to find a new doctor. I had the exact same problem with my doctor just before Christmas, I also get pains and aches in the joints of my legs, it's like I have sea legs some days!!! I went and found a new doctor who cares and actually understands everything about this disease, his own niece has itp so he was able to relate to what I was explaining to him. It made a huge difference especially mentally to me. Best of luck with finding a new doctor.

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For all of you fatigued and achy joints, what treatments are you on?? I’m miserable with both right now, but assume it’s prednisone tapering and Rituxan infusions. Maybe wrong assumption as I’m new to this.

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For me I take pomegranate extract and turmeric for anti inflammatory and I also use essential oils on my joints -much relief the oils though need to be the pure kind not the cheaper versions.

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I hate that. I have been through 2 oncologist. One almost killed me with an nplate injection he shouldn't have given me because I have a liver disease. I didn't know it at the time that you shouldn't take it. I wish doctors would explain all the side effects and what could happen instead of, "I want you to try this". My other doctor it takes 3 to 4 hours to see him after blood work. His staff always over books him. I like him but he, like yours, doesn't believe me when I tell him my enlarged spleen is hurting me. It is pushing into my ribs. My liver doctor doesn't either. It is at 20 cm now. He also says being tired is not a symptom I just tell him he is wrong, just because it isn't in a book doesn't mean it isn't part of a symptom for us. I am tired of sugar coating it with these doctors. I love my oncologist for his bed side manners are wonderful and he is very thorough so I put up with his downfalls. I guess I am learning through my journey there are really no answers. They don't know what to do. The steroids don't work for me and they won't give me a platelet transfusion. My RBC is good and hemocrit at this time so all they can do is wait and see. I am beginning to really understand this disease. I research as much as I can and try to find support groups. We know our bodies better then the doctors. They are more text book. There needs to be a study for this awful disease. Sad thing is I have more then one rare disease that has no cure. I think it is since I have no thyroid anymore. Auto immune. But they have checked my antibodies. They think my liver disease has minimal scarring and causing my spleen to eat my platelets. I am currently on a liver trial study for NASH. They think if we can get that resolved the rest will follow. Anyway.....just wanted to encourage you not to let them tell you "it's in your head". My internal doctor manages my pain for me. I quit going to alot of specialists for the other issues when my internal doctor agreed to prescribe my medication. The anti depressant helps me some. I was stubborn for years and wouldn't take it. I had a life altering emergency with my husband on Christmas night and he almost died from an Aortic Dissection type A. He is on the mend now but it has been hard on me. I had to put my issue on the back burner but quickly realized I can't do that if I want to take care of him. Take care, and love those around you. Forget about what they don't know about it. It's not in your head. I have researched.

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kyriak51 here: Have you been diagnosed with ITP? When my platelets drop below 20K I experience increased fatigue, bruising, irritability and depression. The most common complaint I see on this site is FATIGUE. I have very little respect for a doctor who dismisses patient complains because he/she does not know or understand the common complaints of ITP patients. I hope he/she isn’t a Hematologist/Oncologist , find another doctor. Be well:)

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