Please have them scan your thyroid! Blood work is not always the right way to diagnose a thyroid issue. My blood work never showed a thyroid problem. However, I had nine lesions on my thyroid once it was scanned. Must better to be sure then to guess!
Deenie
Mia said:
Bernadine thank you so much your letter made a TON of sense to me and I am NOT letting them take my thyroid out. In fact, when I called the endocrinologist today they said that surgery is no longer needed because my bloodwork came back better. WTH? I am exhausted with all of this, but the endo has me angry. Why would he scare the hell out of me like that?
My Rhumy said that he is going to put me on planquinel and hopefully that will help me ;) GOD BLESS YOU!
Sometime it can takes a little while to get things back under control once your thyroid has been removed. It took them months to regain my system. I am allergic to synthroid and they had to put me on armour thyroid which is a pig hormone. My calcium levels where messed up for weeks! I took 10 tums tablets a day and it returned to normal after two weeks. My thyroid hormones where also messed up for over a year! In my case my thyroid had to come out. I had nine lesions/nodules. I was having a had time swallowing with the enlargement. It was the best thing that happened to me, other then the blood level issues. The hair following out can be from lupus and not the thyroid at all! My hair falls out and my thyroid is under control. You have to give your body sometime to recover!
Deenie
Adelina said:
I’m sorry to hear all that I hope you feel better soon . weel I just had My thyroid surgery and I think I worse now , I been home sick they removed my thyroid due to a non milgant tumor hair falling out more I having trouble with the calcium after the thyroid was taken out hair falling out more cold feeling is worse and now I having high blood pressure.
I am ordering some raw shea butter which is supposed to stop the hair from falling out. I will let you know how it goes. :)
XXOO Julie
Tez_20 said:
Hello Mia,
I hope your keeping ok today besides having a pleasant weekend.
Using Biotin is good for your hair apparentley...i use elvive it does'nt stop my hair coming out but it helps with the white flakes i suffer with from my head.
I hope it works for you...regarding my hair i don't grow it no more i keep it skinned on grade1 but the elvive stops the flakes besides helping my psoriasis...it's a nightmare we all live in and i hope the shea butter helps you in time...best of luck Terri :) xxx
Julie said:
Terri,
I am ordering some raw shea butter which is supposed to stop the hair from falling out. I will let you know how it goes. :)
XXOO Julie
Tez_20 said:
Hello Mia,
I hope your keeping ok today besides having a pleasant weekend.
Using Biotin is good for your hair apparentley...i use elvive it does'nt stop my hair coming out but it helps with the white flakes i suffer with from my head.
I sure understand, I hate the name of the lupus wolf too. It attacks when your not looking and can tear you apart. The good news is it can go into remission for years and years and to that you say let sleeping dogs lay!!!! I sure hope you do not have lymphoma it is a cancer of the lymphnodes, but people have recovered from that too. My son Michael had lymphoma and was on chemo for several months and it seem to be gone, at least we pray it is. Biggest thing is don't borrow trouble, i know itis easier said than done, but trust me it is so hard on you if you worry about everything the doctors think it might be. It is Better to wait until you know what is after all the tests are in and a firm diagnosis is made. So many times it is not what the doctor think it is at first, lupus is weird that way, it seems like a bunch of other things at first and the doctors have to eliminate thing one at a time.
I suffer with Lymph nodes also known as (cysts) and they're purely cancer...as i've one removed from my face and throat and they came back negative regarding cancer but now i have another on my face where the other one was removed besides my jaw line but i am pleased your son pulled through ok with his chemo.
Lupus can be a nightmare to live with as i find it a never ending story but going into remission if it happens...it must be relief on a load of people.
Hugs Terri xxx
sweet pepper said:
I sure understand, I hate the name of the lupus wolf too. It attacks when your not looking and can tear you apart. The good news is it can go into remission for years and years and to that you say let sleeping dogs lay!!!! I sure hope you do not have lymphoma it is a cancer of the lymphnodes, but people have recovered from that too. My son Michael had lymphoma and was on chemo for several months and it seem to be gone, at least we pray it is. Biggest thing is don't borrow trouble, i know itis easier said than done, but trust me it is so hard on you if you worry about everything the doctors think it might be. It is Better to wait until you know what is after all the tests are in and a firm diagnosis is made. So many times it is not what the doctor think it is at first, lupus is weird that way, it seems like a bunch of other things at first and the doctors have to eliminate thing one at a time.
I was in remission for about 3-4 years from 2004 to 2008. Since then I have had everything from coma's high fevers to eye surgeries, its like a sleeping giant awoke and said OK I have to make up for that nap get busy little minions and make her miserable. BUT I remember remission so I know it is possible and just how sweet it is. Thank you for reminding me :)
I think the same sleeping giant awoke in me as well. I would be happy if remission for me would be like the minor aches and pain that I first experienced when I thought I was just getting 'old'. I don't ever hope to be pain free again, just tolerable. Trisha
You may very well have a different (& better) daily outcome in six months time. Allow time for you to 'learn' about your Lupus, allow time for the flare to settle & stabilise, meds to kick in etc etc.
I hope this is the case for you. Best Wishes Kaz xo
Mia said:
I'm praying that we ALL go into remission, or that we're healed from this awful disease. I'm not as bad as some of you and I pray that I never am. What I know is that its scary, overwhelming and tiring. I am so sick of doctors not listening and the symptoms waking me up or preventing me from sleeping restfully. I wake up exhausted and go to sleep exhausted. I am now experiencing pain in my feet, back and hands. My blood pressure is high and it used to be low low low. My hair is falling out, I have no memory and feel like I have alzheimers. This itching is enough to drive you into a nut house! Other then that, I have air in my lungs and am grateful to be alive. We are going to build a house and I requested that the builders make the hallways and door entrances wide enough for a wheel chair (God forbid I get worse, I wanna be ready). I have decided to do my best to have a positive attitude...its not always easy but, I don't want to be a whiner lol This disease will NOT take my personality ;) I am choosing to push through even if I"m crawling I'm still moving forward! God bless...and to think I was only diagnosed in July of this year ;)
I've never been in remission unless you can call it years back before it rose it's ugly head 5yrs ago but in the meantime was causing other issues...i'll never known.
I bet it must be terrible being in remission for so long and then your hit with it again...sounds like your life besides must have been running steady as where where worry was concerned etc because lupus being linked to the lot anything can trigger it as you know.
I'm just sorry with everything it's caused you but how it's hitting you hard that's what it's doing to me besides the added bonus of the sjogren's besides just in lead apparentley in my system, the combination of the two are a nightmare.
Do takecare and love you loads :) xxx
Julie said:
Dear Terri
I was in remission for about 3-4 years from 2004 to 2008. Since then I have had everything from coma's high fevers to eye surgeries, its like a sleeping giant awoke and said OK I have to make up for that nap get busy little minions and make her miserable. BUT I remember remission so I know it is possible and just how sweet it is. Thank you for reminding me :)
I quite agree with everything you've stated about Lupus, the degree and forms it hits we at is totally sick and i'm surprised alot of members have'nt ended up in the nut house, although it's very testing to the body, the human brain is the one that excepts the alerts of what we feel and admiration goes out to we all for fighting it so strong.
Yes get your new home where the doors are widdened and also space to access each run properly..i hope to god it never comes to you that way but better to be safe than sorry, once you've settled in.
Hugs Terri xxx Mia said:
I'm praying that we ALL go into remission, or that we're healed from this awful disease. I'm not as bad as some of you and I pray that I never am. What I know is that its scary, overwhelming and tiring. I am so sick of doctors not listening and the symptoms waking me up or preventing me from sleeping restfully. I wake up exhausted and go to sleep exhausted. I am now experiencing pain in my feet, back and hands. My blood pressure is high and it used to be low low low. My hair is falling out, I have no memory and feel like I have alzheimers. This itching is enough to drive you into a nut house! Other then that, I have air in my lungs and am grateful to be alive. We are going to build a house and I requested that the builders make the hallways and door entrances wide enough for a wheel chair (God forbid I get worse, I wanna be ready). I have decided to do my best to have a positive attitude...its not always easy but, I don't want to be a whiner lol This disease will NOT take my personality ;) I am choosing to push through even if I"m crawling I'm still moving forward! God bless...and to think I was only diagnosed in July of this year ;)
Love you loads too Terri. We will get there I know God has a plan for both of us... all of us. we just have to let go of the wheel and let him drive :)
Tez_20 said:
Hello Julie,
I've never been in remission unless you can call it years back before it rose it's ugly head 5yrs ago but in the meantime was causing other issues...i'll never known.
I bet it must be terrible being in remission for so long and then your hit with it again...sounds like your life besides must have been running steady as where where worry was concerned etc because lupus being linked to the lot anything can trigger it as you know.
I'm just sorry with everything it's caused you but how it's hitting you hard that's what it's doing to me besides the added bonus of the sjogren's besides just in lead apparentley in my system, the combination of the two are a nightmare.
Do takecare and love you loads :) xxx
Julie said:
Dear Terri
I was in remission for about 3-4 years from 2004 to 2008. Since then I have had everything from coma's high fevers to eye surgeries, its like a sleeping giant awoke and said OK I have to make up for that nap get busy little minions and make her miserable. BUT I remember remission so I know it is possible and just how sweet it is. Thank you for reminding me :)
Well said and it does make you wonder what's happened to compassion in people? :) xxx
Mia said:
I wish more people understood how this disease robs us...no its not cancer and we all have air in our lungs..I just wish that people had more compassion for us with Lupus...
