T-Cell LGLL

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T-Cell LGLL

by tjteresa on Fri Jan 14, 2011 07:24 AM

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Hello Everyone,

F, 52, DX Nov 2007.  Dx was scary in the beginning, but have had the opportunity to converse with quite a few other LGLers on message boards such as Yahoo health group and RareShare.  The Yahoo group is the most user friendly but is hard to get signed up.  Every post comes straight to my E-mail and I can reply if I want. Would love to read all the posts here and reply, but don't have the energy to keep up with all. 

Two things we all have in common: Hot Flashes and Fatigue.  Other than those, there is a wide range of different issues you may or may not have to deal with.  We believe I have had this for most of my life and have only needed treatment since Dx. Lately my counts have been near normal for no apparent reason. Never know what issues I might have to deal with on any given day, they come and go rapidly and as long as a resulting infection does not happen, I try to stay away from meds, as they can complicate matters. I take my Thyroid pill, Vit D and everything else is on an as needed basis. I keep antibiotics on hand for general infection problems that might arise. I believe the random problems I have are caused by the swelling from white cells attacking bacteria, fungus or viruses.  I try to get my rest, eat well and stay away from stress. So far so good, as have not been in hospital since DX, Keep a close eye on bloodwork with Hemotologists and see many other doctors, but they don't generally have any definate answers for me.  LGLL can be frustrating, mysterious and financually taxing.  The message boards can be a big help especially with the feelings of isolation from LGL's rarity.

Best Wishes, TJTeresa

 

RE: T-Cell LGLL

by angiejane_2000 on Thu Sep 13, 2012 08:55 PM

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On Jan 14, 2011 7:24 AM tjteresa wrote:

Hello Everyone,

F, 52, DX Nov 2007.  Dx was scary in the beginning, but have had the opportunity to converse with quite a few other LGLers on message boards such as Yahoo health group and RareShare.  The Yahoo group is the most user friendly but is hard to get signed up.  Every post comes straight to my E-mail and I can reply if I want. Would love to read all the posts here and reply, but don't have the energy to keep up with all. 

Two things we all have in common: Hot Flashes and Fatigue.  Other than those, there is a wide range of different issues you may or may not have to deal with.  We believe I have had this for most of my life and have only needed treatment since Dx. Lately my counts have been near normal for no apparent reason. Never know what issues I might have to deal with on any given day, they come and go rapidly and as long as a resulting infection does not happen, I try to stay away from meds, as they can complicate matters. I take my Thyroid pill, Vit D and everything else is on an as needed basis. I keep antibiotics on hand for general infection problems that might arise. I believe the random problems I have are caused by the swelling from white cells attacking bacteria, fungus or viruses.  I try to get my rest, eat well and stay away from stress. So far so good, as have not been in hospital since DX, Keep a close eye on bloodwork with Hemotologists and see many other doctors, but they don't generally have any definate answers for me.  LGLL can be frustrating, mysterious and financually taxing.  The message boards can be a big help especially with the feelings of isolation from LGL's rarity.

Best Wishes, TJTeresa

 

Hi,  I have just been told today that I have T-Cell LGLL.  Have known for some time that I have low white cell counts, but only just had advanced blood tests to find out what it is exactly.  I have hot flashes but only recently put down to my age.   I have had this white cell problem for 12 years with no problems, no picking up of infections but do experience the fatigue.  I too have an underactive thyroid and take thyroxine daily to counteract this.  To be honest, I wouldn't know I had this problem unless the doctors had diagnosed it.  I am keeping my fingers crossed that i don't start having any infections.  If you need someone to sound off at, dont hesitate to contact me. 

Best wishbes,  Angie

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