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Which is correct: "I had ITP" or "I have ITP"?

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13 years 10 months ago #20031 by docmomma
I was diagnosed in 1984 and had a splenectomy. Platelets have been high for 27 years (yay me!) But if ITP is an autoimmune disease, do I still have it? I know that it is possible that the low platelet count can recur -- but that's not what I mean. I read things like "people with ITP are more likely to have fatigue". So can that explain my crushing fatigue? Or am I not a person with ITP anymore? Do the studies refer to me, or not?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 10 months ago #20034 by Sandi
Definitely a grey area. I would think that by now, you could say "had" since it's been so long.

As for your fatigue, I'd look at other reasons. There are many...thyroid, Vitamin levels, depression, etc. I think fatigue can be a factor with ITP, but too many people ignore looking at other causes. I've been in remission for 6 or 7 years, but have fatigue due to Lupus. In addition to that, I have found that I have other valid reasons for fatigue that could be corrected....low Vitamin D, low potassium, low B-12, low ferritin, etc. Everytime I ask to have something else tested, it's low too. Once I treat it, I do end up feeling a bit better. I can't keep up with myself.

Seriously, look past the ITP and get a good work-up.
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13 years 10 months ago #20035 by docmomma
I've had every kind of workup. All I get is "must be stress". Just wondering if an autoimmune condition ever goes away completely.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 10 months ago #20036 by Sandi
You could still be producing some antibodies, but not sure if that would contribute to fatigue. Maybe they missed something. There are a lot of things to check.

I don't know. Everyone I know says they are tired. It's an epidemic and definitely an overused word. If someone I know says they are always tired but they still have a social life or go out to dinner and movies, they are not that tired.
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13 years 10 months ago #20041 by Dean
High Platelets for 27yrs, I would say you "had" ITP. Definatly "yay" for you!!! Oh sure you can still experience low counts anytime.
Do you feel it is temporary fatigue due to being overtired/overworked or chronic fatigue which lasts longer and is more profound. Chronic fatigue is a nearly constant state of weariness that develops overtime and diminishes your energy and mental capacity. Fatigue at this level impacts your emotional and psychological well-being. Fatigue can be a symptom of an underlying medical problem that requires medical treatment. Most of the time fatigue can be traced to one or more of your habits/routines. Lifestyle factors that can cause feelings of fatigue; alcohol use or abuse, caffeine use, excessive physical activity, inactivity, lack of sleep, medications, unhealthy eating habits. Personally I think ones diet plays a big roll in how one feels physically and mentally Psycological problems, fatigue is a common symptom of mental health problems; anxiety, depression(major), Grief, stress. Medical conditions; unrelenting exhaustion may be a sign of a medical condition or underlying illness. If your Platelets are with in range and you are experiencing "crushing" fatigue, I would mention it to your Dr. and consider having a few other levels checked as Sandi mentioned. My Platelet count is around 200k but I have been feeling fatigued lately. I know that if I would stop having a negative attitude and eat healthier, I would feel much better physically and mentally. I feel the majority of all the health issues are due to the chemicals/preservatives in the food we eat and the pollution in the air we breathe. I went through two depression phases and I know what you mean about "crushing" fatigue. Do not let it go, get it checked!!!! If your body is continuously at war with something inside, fatigue is certainly going to be an issue.