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Unexplained neutropenia

(11 Posts)
Pincushion2 Thu 25-Oct-12 20:54:46

I would love to hear from someone who also suffers from this blood disorder - not because I want anyone else to have it but I would like to compare symptoms. It is very rare and the only information when I google is for neutropenia brought on by chemotherapy. I have suffered from neutropenia for approx 7 years - triggered off by a virus.

Since then my neutrophil count has been permanently low and I have phases of feeling really poorly when every day life is a huge battle. It makes working ten times more difficult than it should be - complete exhaustion, nausea, dreadful regular headaches, unexplained rashes, raised lymph nodes, sore throats and aching joints. I have no idea if this is normal with this condition because my consultant is a little baffled (have to visit a haematologist every 3 months) and I cannot find any sort of support group.

I'm typing here in a last hope of finding some supportive information/stories. I'm having a particulary bad phase at the moment and even the smallest task seems insurmountable. Would be grateful to hear from anyone who has experience of this.

Welovecouscous Thu 25-Oct-12 20:57:29

Message withdrawn at poster's request.

Pincushion2 Thu 25-Oct-12 21:02:01

Sorry to hear you have suffered too Welove. It's frustrating isn't it? I feel as if I am only 50% functioning most of the time.

I don't think I have had my calcium level tested. I have tons of blood tests but not sure this was ever checked. Would it cause my symptoms? Also - sorry to cross-question but are your symptoms similar to mine?

Welovecouscous Thu 25-Oct-12 21:11:19

Message withdrawn at poster's request.

Pincushion2 Thu 25-Oct-12 21:18:15

I think my thyroid is normal but once again I have lost track of the types of blood tests I have had. Think I will go armed with this info to my doctor tomorrow. Need to see someone soon because I can feel something just isn't right.

Sorry to hear you have had all these things too and thank you for your advice. Do you know what your neutrophil levels were at your most recent test?

MrsWooster Thu 25-Oct-12 21:21:54

My dad had it, post viral, and got better within months so there is definitely hope (and he was 70ish). I'll try and ask him how/what/why etc and post if I find out more...

Welovecouscous Thu 25-Oct-12 21:23:22

Message withdrawn at poster's request.

Pincushion2 Thu 25-Oct-12 21:36:55

Thank you MrsWooster - that would be helpful.

Welove - I will take your info with me. Does a thyroid problem cause extreme fatigue, headaches and nausea?

Welovecouscous Thu 25-Oct-12 21:43:45

Message withdrawn at poster's request.

careergirl Thu 25-Oct-12 22:08:23

I too have this - caused by epilepsy medication. It is currently being monitored through GP via regular blood tests and he is seeking advice from a hametologist (sp) I have also been feeling ridiculously tired and in the absence of anything else it must be the neutropenia. This is "something new" so I will go and speak to the GP about it. Oddly enough this week also been experiencing severe headaches which puzzled me - now think it may be linked.

Pincushion2 Thu 25-Oct-12 22:12:33

I sympathise Careergirl. It's no fun. I am finding it really difficult to work at the moment. Trouble is I now blame everything on my neutropenia but there have been some good suggestions on this thread that something else could be going on too. It's confusing!! Going back to GP tomorrow.

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