Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 Hi, I have my endo appt tomorrow. I hope I get put on something because I have many of the same symptoms you mention and worse....the worst of all are the heart palpitations and the hot flashes. Nobody seems to make mention of their numbers. Could you tell me what yours are? I have a TSH of .53. What about you? I would really appreciate this. Thanks. Have you thought about taking St. 's Wort or SAM-e? I am taking the first one to get through this for now. It is working, surprisingly. It's only been a few days, but before I took it, I used to feel like blowing people away. I know this is totally politically incorrect, but I have started drinking a beer at night. It helps too. Barbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 Dear Deb, I was hyperT (Grave's disease), and was VERY angry--it is a normal symptom. Even after being on Tapezol and Atenol, which reversed the other symptoms, I think the anger and irritability was still there. Now that I'm recovered (see archives), the anger and irritability have gone away--or, should I say, are back to normal levels (I guess at times I am an angry and irritable person--I wonder how many people who've gotten hyperT are like this?) Read the archives to find out which supplements to use--good luck, and feel better. AntJoan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 Dear Barbie, has written a lot about taking beer for hyperT--apparently the copper it contains is very helpful. AntJoan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 Dear Barbie, My TSH is off the charts, something like .01 or .05 but my T3 and T4 counts are only slightly high. At the moment the doctor suggested I keep an eye on my body and look for symptoms which are easy for me to notice since I wnow know what to look for--fast pulse, rapid heart beat (I'm taking Cal/Mag) and little rough skin patches on my shins near my ankle bones and slight tremors--in my legs more than my hands. The moodiness really hits me the day before my period perhaps more than normal. In January, if the blood work isn't different, I'll start on medication. AntJoan (see her entries) has recovered using medicine and supplements. I'm now taking the suggested supplements and I think they're doing something. I'm a bit scared of over mineralizing myself, but so far, okay. Keep up your postings--I think it is helpful to all. . Derusspinsk-@... wrote: original article:hyperthyroidism/?start=29 91 > Hi, > > I have my endo appt tomorrow. I hope I get put on something because I have > many of the same symptoms you mention and worse....the worst of all are the > heart palpitations and the hot flashes. Nobody seems to make mention of > their numbers. Could you tell me what yours are? I have a TSH of ..53. What > about you? I would really appreciate this. Thanks. > > Have you thought about taking St. 's Wort or SAM-e? I am taking the > first one to get through this for now. It is working, surprisingly. It's > only been a few days, but before I took it, I used to feel like blowing > people away. I know this is totally politically incorrect, but I have > started drinking a beer at night. It helps too. > > Barbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 Dear Sue, Please don't " zap " your thyroid--it's the only one you've got! Read through the archives for this board, get the supplement list, and try to rebalance your body. I know your thyroid is " acting up " --but so do our kids or our husbands, and we don't destroy them. Just like a family member who is acting up, our thyroid is trying to tell us something. If we listen closely, we can address the problem. Hope you feel better, AntJoan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Dear Charlene, Welcome to the group. There are plenty of people here whose children are on methotrexate. Our daughter, age 11, has systemic JRA and is so far on plaquenil, naprosyn, and 2mg prednisone. It sounds like you have lots on your plate. There are several parents, whose children are as young as yours , on this site. Good luck, and again welcome. >From: chychysworld@... >Reply- egroups > egroups >Subject: RECENTLY DIAGNOSED >Date: Tue, 25 Jul 2000 22:56:42 -0000 > >HELLO. MY NAME IS CHARLENE. mY DAUGHTER IS 3 YEARS OLD AND WAS >DIAGNOSED WITH JRA 6 MONTHS AGO. THE TREATMENT SHE ORIGINALLY STARTED >WITH DIDNT WORK SO NOW THEY HAVE INCREASED HER MEDS. SHE IS ON >METHOTREXATE (ALONG WITH OTHERS). HAS ANYONE HAD THEIR CHILD ON THIS >MEDICINE LONG AND HAVE THEY HAD ANY SIDE AFFECTS? HAS ANYONE FOUND >ANY OTHER TREATMENT BENEFICIAL? I AM CONCERNCED ACOUT THIS MEDICINE >BECAUSE I HEARD IT IS A CHEMO THEROPY AGENT. MY DAUGHTER IS ALSO ON >OTHER MEDS BECAUSE OF SEIZURES AND ASHMA, SO I AM TRYING TO FIND OUT >AS MUCH AS I CAN ABOUT THIS MEDICINE. I THOUGHT THE CP,SEIZURES AND >ASHMA WERE ENOUGH NOW WE HAVE JRA ON OUR PLATTER TOO. ANYWAYS ANY >HELP ANYONE COULD GIVE WILL BE APPRECIATED. > > SEARCHING CHARLENE > > > > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Charlene hi i am Robbin i have a daughter 13 yrs old who also has asthma with JRA ahe also has acidosis she takes Voltaren for the JRA and her albuterol solution and previntolin inhaler for her asthma and zyrtec and now shes takeing gas x due to gas i am not familar with the m medication but some in the group are glad to meet you i am in atlanta Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Hi Charlene, Welcome to the group.My daughter takes the mtx and the main side affect she had was the hair lost and mouth sores. Her hair has grown back and the mouth sores has healed. Oh yeah she has asthma, adhd,tourette's syndrome,ezcema and allergic to plenty of foods,meds. and etc.She takes plenty of other med too, but seem to be doing pretty good on the mtx.She still have her flares , but over all now she doing pretty ok. Ywellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Charlene, Methotrexate is a chemo. agent,but it also used as an anti-infammatory. It is used in much smaller doses with jra than with cancer. Nausea, vomiting, and increased fatigue are some of the side effects, but generally folic acid is given with methotrexate and this seems to help with side effects. Some even take phenergan prior to taking the mtx. to help with nausea and vomiting. My daughter, Paxton, who is 6 yo and has systemic jra has been on mtx. for several months now. The only side effects we have had are increased fatigue and some mild hair loss. Paxton takes 5mg. mtx every Friday and 1 gram of folic acid every day. She also takes vioxx, plaquenil, prilosec, and enbrel. She has also been pulsed with mega doses of IV steroids and taken po prednisone. The steroids are what brought her out of her last flare. Hope this has helped you some and welcome to the group. Tracey RECENTLY DIAGNOSED > HELLO. MY NAME IS CHARLENE. mY DAUGHTER IS 3 YEARS OLD AND WAS > DIAGNOSED WITH JRA 6 MONTHS AGO. THE TREATMENT SHE ORIGINALLY STARTED > WITH DIDNT WORK SO NOW THEY HAVE INCREASED HER MEDS. SHE IS ON > METHOTREXATE (ALONG WITH OTHERS). HAS ANYONE HAD THEIR CHILD ON THIS > MEDICINE LONG AND HAVE THEY HAD ANY SIDE AFFECTS? HAS ANYONE FOUND > ANY OTHER TREATMENT BENEFICIAL? I AM CONCERNCED ACOUT THIS MEDICINE > BECAUSE I HEARD IT IS A CHEMO THEROPY AGENT. MY DAUGHTER IS ALSO ON > OTHER MEDS BECAUSE OF SEIZURES AND ASHMA, SO I AM TRYING TO FIND OUT > AS MUCH AS I CAN ABOUT THIS MEDICINE. I THOUGHT THE CP,SEIZURES AND > ASHMA WERE ENOUGH NOW WE HAVE JRA ON OUR PLATTER TOO. ANYWAYS ANY > HELP ANYONE COULD GIVE WILL BE APPRECIATED. > > SEARCHING CHARLENE > > > > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 Hi Charlene My daughter has been on methotrexate for over 5 years now. Until early March she took it orally, but the nausea was becoming too big a problem. So we finally switched to injections, and it has been wonderful!! The only side effects we see now are a reduced appetite the following day and sometimes a need for a bit more sleep. I don't really consider those a problem. has had elevated liver enzymes 3 times during the past 5 years. When that happens we just lower the methotrexate dose temporarily and they return to normal. I know that this can be a frightening med, but we look at 's quality of life with it vs without it. That makes the decision easier. It sounds as though your little one already had a full plate, and this is just one more obstacle for her to overcome. I'm sorry she is having to deal with so much. We will keep her in our prayers. chychysworld@... wrote: > > HELLO. MY NAME IS CHARLENE. mY DAUGHTER IS 3 YEARS OLD AND WAS > DIAGNOSED WITH JRA 6 MONTHS AGO. THE TREATMENT SHE ORIGINALLY STARTED > WITH DIDNT WORK SO NOW THEY HAVE INCREASED HER MEDS. SHE IS ON > METHOTREXATE (ALONG WITH OTHERS). HAS ANYONE HAD THEIR CHILD ON THIS > MEDICINE LONG AND HAVE THEY HAD ANY SIDE AFFECTS? HAS ANYONE FOUND > ANY OTHER TREATMENT BENEFICIAL? I AM CONCERNCED ACOUT THIS MEDICINE > BECAUSE I HEARD IT IS A CHEMO THEROPY AGENT. MY DAUGHTER IS ALSO ON > OTHER MEDS BECAUSE OF SEIZURES AND ASHMA, SO I AM TRYING TO FIND OUT > AS MUCH AS I CAN ABOUT THIS MEDICINE. I THOUGHT THE CP,SEIZURES AND > ASHMA WERE ENOUGH NOW WE HAVE JRA ON OUR PLATTER TOO. ANYWAYS ANY > HELP ANYONE COULD GIVE WILL BE APPRECIATED. > > SEARCHING CHARLENE > > > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 ROBBIN THANKS FOR RESPONDING. SOMETIMES I FEEL SO ALONE WITH ALL OF DAUGHTERS MEDICAL SITUATIONS. IT IS NICE TO KNOW THAT IM NOT. ALL OF FRIENDS CHILDREN ARE " NORMAL " , SO THEY DON'T UNDERSTAND WHEN 20 MINUTES ON THE PLAY GROUND IS JUST TO MUCH FOR CHYANNE SOMEDAYS. ANYWAYS THANK YOU AGAIN FOR RESPONDING CHARLENE (FLORIDA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 YWELLEN HOW LONG DID IT TAKE THE MOUTH SORES TO GO AWAY? MY DAUGHTER HAS THEM BAD. SHE CAN BARELY EAT. THANKS FOR RESPONDING SOMETIMES WHEN YOU DON'T KNOW ANYONE GOING THROUGH THIS YOU FEEL SO ALONE AND OVERWHELMED. THANKS AGAIN CHARLENE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 Charlene i understand what you mean about the 20 minutes melissa cant do as she use to a year ago melissa woke up feb 29th 2000 and couldnt walk she ended up in a wheelchair then the dr casted her leg to straighten it from there she went from crutches to walking again with braces on her knees and wrists she has lost 40 days of school she will be going into the 8th grade this year shes excited about it sometimes OUR kids are picked on more often but so far melissa hasnt been on this but she is going to school with the same kids she started kindergarden with this helps alot the kids are like a big help group when she was in the wheelchair there was this one little boy that took right with her and helped her everyday in school he was a little gentleman he was always there lolololol the kids have enough to deal with besides getting made fun of to so yall parents keep the kids hopes and faith up look at the real heros :-) Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 Charlene, You are more than welcomed.My daughter dr gave me some mylanta,benadyrl and lidocaine mixture for her mouth and it was heal in about a week. This is used to gargle with and it works really well too.The mouth sores hasn't returned either. Ywellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 Charlene, Where in Florida do you live? We live near Tampa and go to All Childrens Hospital, in St. sburg. We see Dr. there. Where do you go? I havent seen any one else on the list that lives in Florida, so I was just wondering. My daughter is 8 years old and has Systemic jra. B. > ROBBIN > > THANKS FOR RESPONDING. SOMETIMES I FEEL SO ALONE WITH ALL OF DAUGHTERS > MEDICAL SITUATIONS. IT IS NICE TO KNOW THAT IM NOT. ALL OF FRIENDS CHILDREN > ARE " NORMAL " , SO THEY DON'T UNDERSTAND WHEN 20 MINUTES ON THE PLAY GROUND IS > JUST TO MUCH FOR CHYANNE SOMEDAYS. ANYWAYS THANK YOU AGAIN FOR RESPONDING > > CHARLENE (FLORIDA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 LINDA B. WE LIVE IN OCALA AND GO TO SHANDS IN GAINESVILLE. MY DAUGHTERS RHEUM DR IS AYOUB AND HE IS AN OLDER GENTLEMAN WHO IS POSITIVELY WONDERFUL. WE TAKE HER TO SHANDS BECAUSE THAT IS WHERE ALL OF HER SPECIALIST ARE SINCE SHE HAS SO MANY DIFFERING AILMENTS. CHYANNE IS THREE YEARS OLD AND HAS BEEN TO EITHER THE DR,OT,PT OR SPEECH EVERY WEEK SINCE SHE WAS BORN. SHE WAS BORN WITH A BLEED IN THE BRAIN. WHICH CAUSED HER CEREBRAL PALSY AND SEIZURES. SHE ALSO HAS ASHMA. 8 MONTHS AGO MY VITAL 2 YEAR OLD STARTED LIMPING AND COMPLAINING HER FOOT(ANKLE) WAS HURTING. I TOOK HER TO HER PEDS DR WHO SAID IT WAS FROM THE CP. THEN THE FEVER AND REDNESS SET IN AND SHE WAS HAVING A HARDER TIME WALKING. AFTER X RAYS, BLOOD WORK AND OTHER TESTS THEY DECIDED IT WAS SPRAINED.. AFTER 2 MONTHS THE PAIN WAS SO BAD SHE COULDNT EVEN WALK . SO I TOLD THEM I WANTED TO SEE A SPECIALIST. I WENT TO DR. AYOUB WITHIN 1 WEEK SHE WAS DIAGNOSED AND BEING TREATED. SHE IS NOW WALKING AGAIN WITHOUT THE WALKER AND DOING GREAT. EVERYTIME I FEEL OVER WHELMED I JUST LOOK AT HER AND ALL SHE HAS OVER COME AND I KNOW I CAN SURVIVE EVERYTHING. THANKS FOR LISTENING CHARLENE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 Hi Charlene, My son Elliot is 6 yrs old. He has been on methotrexate for the past four years and without any side effects. Some of the people who participate on this list have complaints of nausea or fatigue. While it is a cytotoxic drug, the dose used in the treatment of JRA is much lower than that used in cancer treatment. I always find that starting new drugs/treatments is stressful- the unknowns etc. but not treating it is worse. You certainly have alot to deal with.I hope everything improves. Good luck. Rena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 I will listen if you want to talk! I have had Hep C for 7 years now, and I know what it's like to just find out you have it. You can talk to me anytime. Korri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hello May, I was diagnosed in Aug 2000, I was very ill with AIH, jaundice, sickness, joint pain etc. My starting doses were 20mgs Pred and 75 Imuran. My pred was reduced and I my imuran was changed to a stronger immunesuppresant. I'm currently on 10mgs Pred & 2mgs Myclophenolate (cell cept). I've had both the flu and Menigitis C vaccinations, and take good care of myself, I tend not to go out late and stay in if I have a slight sniffle, as I tend to catch colds easily. Luckily I've only had 2 so far. Last week my mum was also diagnosed with suspected AIH, we are waiting for more results. Its uncommon for 2 people in the same family to have AIH, usually the other person has another autoimmune disease. They think she has AIH at a low level and has had it for years, she does not have any of the symptoms I had apart from general joint pain, but as far as I can remember she has always compained of that! It took about a month for my whole situation to sink in, but that was because my new medication is very intrustive, at first I had to take it 4 times a day on an empty stomach. I found Pred and Imuran unintrustive and tened to forget that I was ill. I have only told people on a need to know basis. I am at law school and only 1 of my tutors and administration knows. I think its true to say the more ill you are and the more meds you take, the more effect the whole AIH experience has on you. If my mum does have AIH to I don't think her life will change much or that she will tell anyone unless necessary. Hope this has helped you a bit. This group is excellent, if you have any questions someone is bound to know the answer. Best wishes, age 21, AIH London UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi, I don't usually write, I kind of just read. But I wanted to respond to . I also don't really mention that I have AIH to anyone unless they need to know. My academic advisor knows and the health center but that's pretty much it. I was diagnosed in the summer of 1997, and I have been taking prednisone and imuran since. Now, I am at my lowest dosage of pred, and my lft's are very close to normal. I feel lucky because during my first yr. of college I was very sick and since I am not goig to school in my hometown I had to travel home every single weekend. Now, I only have to go home every couple of months so it helps a lot. I just thought I'd respond because I have never corresponded with anyone with AIH who is close to my age. I am 20. -Mari in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi May I've been on a dose of 7.5 mg prednisone and 100mg imuran for years now. I've probably never be able to get of the medicine, but the low dose keeps it all under control. And as far as getting sick. I've haven't had something like a cold for a couple of years. And I don't even get flushots. I eat healthy and try to take good care of myself. But I have made some changes in my life. Tell your mom to take good care of herself! Heidi so Cal. > i would be interested in janet's " diary " of her experience with AIH. > my mother was recently diagnosed with AIH and feeling no ill effects > from the disease...yet. i am a little concerned that she is in > dinial because she hasn't changed her lifestyle nor has she shared > her problems with her co-workers. don't get me wrong. i'm glad > she's living life so fully. she will be 60 this year. however, she > has only started the medications imural and prednisone. think she's > only on 5mg of the pred. has blood work done again tomorrow. from > what i've read many people are on much higher doses and that's when > it takes a toll on a person. i'm hopeful that the low dose will keep > thinkgs under control. she lives in michigan and sees doctors at the > university of michigan hospital. > > i guess i'm really concerned with the imuran suppressing the immune > system. i think she will be more likely to get sick. shouldn't she > be guarding herself against that? i would be interested in the > groups opinions. thank you. > > may - daughter of mom AIH 4/00 - first diagnosed but not confirmed > until 12/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 In a message dated 1/20/01 1:26:32 PM Pacific Standard Time, lrb@... writes: i am a little concerned that she is in > dinial because she hasn't changed her lifestyle nor has she shared > her problems with her co-workers. Regarding whether to tell people or not -- you have to make very careful decisions about whether, in specific situations, it will be helpful or harmful to tell. Employers, and others, sometimes write you off in terms of work and/or social potential. It shouldn't be that way, but it is. You can say "who needs friends like that, anyway", but for work situatiions, you have to think strategically about promotions, bonuses, opportunities, etc. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 mayodm@... wrote: > i would be interested in janet's " diary " of her experience with AIH. > my mother was recently diagnosed with AIH and feeling no ill effects > from the disease...yet. i am a little concerned that she is in > dinial because she hasn't changed her lifestyle nor has she shared > her problems with her co-workers. don't get me wrong. i'm glad > she's living life so fully. she will be 60 this year. however, she > has only started the medications imural and prednisone. think she's > only on 5mg of the pred. has blood work done again tomorrow. from > what i've read many people are on much higher doses and that's when > it takes a toll on a person. i'm hopeful that the low dose will keep > thinkgs under control. she lives in michigan and sees doctors at the > university of michigan hospital. > > i guess i'm really concerned with the imuran suppressing the immune > system. i think she will be more likely to get sick. shouldn't she > be guarding herself against that? i would be interested in the > groups opinions. thank you. > > may - daughter of mom AIH 4/00 - first diagnosed but not confirmed > until 12/00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 In a message dated 2/8/01 12:33:21 PM, Dolfanna49@... writes: << Babesiosis levels were 2400:1 and my LUAT for the three days were 239, 245, 249. She said these levels are very high. >> These ARE really high. Why are you stopping the Mepron? it is supposed to be a 4-6 month treatment. sue in nj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Carol, My Dr is an Otologist and I have just had my first surgery in June. He feels very confident that he will be able to restore my hearing during the next surgery in March of 2001. I am a very optomistic person but when I read all that everyone has gone through I worry. Anyway we will see. I do tend to think that in support groups you will more then likely find those that have had problems. The ones without any problems do not usually seek out a support group. Its nice to read the good stories and I'm glad you have added yours Connie Recently Diagnosed I joined this group to become more informed about a condition I knew little of. I have recently been diagnosed with this bilaterally. It appears that most of you have terrible experiences to relate! I'm curious...have all of you had surgery by an otologist? My otologist performs 5 to 7 cholesteatoma surgeries per week. He rarely has to do more than 2 surgeries per ear. Hearing is usually restored to normal after the second surgery unless there has been nerve damage. Almost everything I'm reading from this group is contrary to his statistics. Also, the surgeon I am seeing is unusually open and accessable. (I have his home phone number, cell phone number, and pager number as well as his email address!) Maybe I'm just lucky to have found such an experienced surgeon. I'm not looking forward to any of the procedures, but I'm grateful that I live in an area that gives us so much access to some of the best medical facilities in the world. I'm going to keep reading...and hoping that all goes well for you...and for me. Carol Quote Link to comment Share on other sites More sharing options...
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