Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 In a message dated 11/7/01 6:48:59 PM Pacific Standard Time, nant8@... writes: << Has anybody been on this high of predisone dose and what did it do to you. >> , I'm so sorry that you are having such a time of it... Are you flaring really bad..? How long have you been like this? I have never been on that high of dose of pred, but I never had a lot of things flaring really bad at the same time. I think you will get some answers from others in the group.. Just know I'm thinking of you and keep us updated as to what they are doing for you. We don't want you in the hospital, but if they can clear it up there then that is where you belong... Sending lots of healing hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 In a message dated 11/7/01 6:48:59 PM Pacific Standard Time, nant8@... writes: << Has anybody been on this high of predisone dose and what did it do to you. >> , I'm so sorry that you are having such a time of it... Are you flaring really bad..? How long have you been like this? I have never been on that high of dose of pred, but I never had a lot of things flaring really bad at the same time. I think you will get some answers from others in the group.. Just know I'm thinking of you and keep us updated as to what they are doing for you. We don't want you in the hospital, but if they can clear it up there then that is where you belong... Sending lots of healing hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 , Sorry to hear you are having such a hard time. The only times I am on really high doses of Pred. is when I am hospitalized with breathing problems. The worst side effects I had at this dose were mood swings and I could not sleep at all. How long are the Docs going to keep you on the high dose of Pred.? Sandy ----- Original Message ----- I need some info. I am having nose,throat, eyes and ear involvment right now. They put me on 250 mg of predisone and I am on metho (whatever its called( and so far no change. It justseems to be going crazy. Has anybody gone through this? If no better by Monday then he said some test in the hospital. Has anybody been on this high of predisone dose and what did it do to you. Please tell me I am not the only one and that its just a mild ordeal and everything will be okay. haha I have faith and I know it will get better but when.Thanks for listening see ya, DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 , Sorry to hear you are having such a hard time. The only times I am on really high doses of Pred. is when I am hospitalized with breathing problems. The worst side effects I had at this dose were mood swings and I could not sleep at all. How long are the Docs going to keep you on the high dose of Pred.? Sandy ----- Original Message ----- I need some info. I am having nose,throat, eyes and ear involvment right now. They put me on 250 mg of predisone and I am on metho (whatever its called( and so far no change. It justseems to be going crazy. Has anybody gone through this? If no better by Monday then he said some test in the hospital. Has anybody been on this high of predisone dose and what did it do to you. Please tell me I am not the only one and that its just a mild ordeal and everything will be okay. haha I have faith and I know it will get better but when.Thanks for listening see ya, DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 Any advice??? I am also a newlywed, and feeling > sorry for my new husband having to put up with me! > M Hi Marlene. Is this your first post here? I was off of yahoo a while and I have a poor memory, so pardon me if you've heard all this before. About what your husband has to put up with: I think that the more traditional a marriage, the more a learning experience it is. My husband e.g. had a lot to learn about hormones from the start, so he too had to put up with a lot (and with a smile too! I trained him well.). This was 15 years before I developed Graves. I'm glad you found this list, though we tend to be anti-RAI here. Don't kick yourself too hard over your decision. You made it with the information you had. Others on this list have too. The important thing is to work on proper hormone replacement. Being too hypo (or too hyper for that matter) can exacerbate thyroid eye problems. The pros here will help you with learn about your HRT options, testing and interpreting tests, supplements such as omega 3 (and calcium) which are really important, and more. Let's hope that this is the worst of any " sickness " you'll have to face together and that it's " in health " from now on. Take care, Fay ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Hi, and Thank You for answering. I have gone to the eye doctor for some baseline tests, and next weekend she is going to put somw plugs in my eyes to help with the tearing and dryness. The doctor also suffers from lupus, so she undestands the discomfort. I go to the endo on the 21st for my first set of blood tests since the RAI. I will get copies so I can gain more information on them. This disease really bites. I do not feel like myself, but feel like I need to " act " like myself around everyone! You are correct in saying since we don't look sick, people just do not realize how we feel. Thanks, again for being there. M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Hi M - Sorry you've had to deal with all of this in such a short time! You say you had RAI fairly recently ago. It's not uncommon to feel worse after RAI before you feel better. After having the RAI, there is an inital blasting effect on the thyroid that can make you feel more hyper. Then, as the thyroid tissue dies, the thyroid hormone that was stored in the tissue is released, which can also contribute to you feeling more hyper! Eye symptoms are often exacerbated after RAI, which unfortuantely a lot of doctors don't tell patients. What you can do now is be aware of your symtpoms and watch for indications that you are going hypo. When are you scheduled to have labwork done again? You should at least be having labs about 4-6 weeks at the most to see where you are. Are you on any replacement hormone yet? You will most likely go hypo now and you want to try to catch this a quickly as possibly. Hypo will make you feel lousy and you will want to get replacement hormone when this happens to stabilize your levels back to " normal " . If you go to http://f1.grp.yahoofs.com/v1/4HwJP4gYNEDCQey2_8pbGmGuqbSt7mjwBJxcgT6aTpuZwGA eCY6_Gn5YTeCAkDb9yxvppn23teQAFXpw/SymptomsList.txt there is an extensive list of both hyper and hypo symptoms. Get to know the hypo ones and call you doctor for labs if you start having them. People become hypo after RAI at different rates. Some it's only 2 weeks, some 6, some it's months later. There's no way to predict. You have to be proactive in contacting your doctor if you feel hypo. It might also be a good idea to have your new hubby familiarize himself with the list of symptoms. Sometimes, when people get hypo, they don't realize how bad they are because they feel too lousy to care, or feel to lousy to figure out what to do. It can be very helpful to have an " outsider " watch for changes in your symtpoms. And get copies of your lab results! See them for yourself, write down what symptoms you were having at the time. This can help you later in determining the " right " level for you. Another important thing to do now is protect your eyes. Graves' opthomalogy (thyroid eye disease or TED)can occur with Graves' thyroid disease and as I said before, the RAI can worsen this. Getting Omega 3 from sources like flaxseed oil can be a big help to your eyes. Standard dose is 1 tablespoon of flax oil for every 100lbs. of body weight. It's good for mixing in smoothies, other drinks, or using as a salad dressing. (Some people can take it straight, I'm not that brave!) Smoking is bad for TED, so try to avoid cigarette smoke if you can. Wear sunglasses anytime you go out. Our eyes can be extra light sensitive and make the eyes hurt worse. Use an eye drop like " Refresh " brand or " GenTeal " (I think that's the right spelling) for dryness. Don't use brands that say " gets the read out " . That can hurt the eyes more. It's also wise to make an appt. with an opthomalogist who deals with TED to get a baseline done for your eyes. Then if you do develop symptoms of the eye disease, you'll have something to compare with. Finally, explain to your hubby that changes in thyroid levels do have an effect on our moods and emotions. If you have preiods of " Graves' Rage " , let him know that it's not really you, it's the thyroid talking. If you're hypo, it can make you feel very depressed, lethargic, and not really care about anything. Once again, it's the effect of the thyroid hormones (or lack of them) and once you get levels stabilized on replacement hormone, you will feel more " normal " . A lot of people have trouble understanding how the thyroid affects emotional state. We don't really " look sick " so people don't understand how bad we can really be feeling. Good luck and hope you feel better soon! need some info > Hi, > I was diagnosed with Graves May 9th, had RAI on June 11th. My eyes > seem to get drying and more swolled daily..and now I am having the > heart racing, palpitations daily again. I feel puffy, tired and hyper > all at once, which doesn't do my mood any good!! All of this started > up at the end of April when I went to the doctor about my > sinus's ..again. Any advice??? I am also a newlywed, and feeling > sorry for my new husband having to put up with me! > M > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hi, Last week or so I read some parents were looking into getting a type of cooling vest or some other things for our children. I got so excited I called her doctor because I actually thought she heard of it. Well guess what none of her doctors have and now they are requesting some type of info so they can look into it and then request if from the insurance company. Apparently the insurance company hasnt heard of these things being used for kids either and while they arent saying no to it they need more info from the doc. Now I know this can help my daughter who gets such bad heat exaustion that it scares me...I mean it really scares me to see her just laying there not moving jsut looking at me with such a blank look. Anyway, I know you guys have given all this info before but if you could be so kind as to repeat it please I would truly appreciate it. mother to (who just turned four on 6/5, thank you god) Mito Complex one. Thanks again and sorry to bother you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hi , Congratulatins on the birthday of ! I can only imagine how hard it must have been to get her to this point and pray for many more birthdays. I think this is a link to what people were posting about. I don't know if the company might be able to give you the " medical support " info you need, but maybe it would be a place to start? http://www.texascoolvest.com/index2.html Hope you can find something to help out your little one in the heat. Best Wishes, Anita > Hi, > Last week or so I read some parents were looking into getting a type of cooling vest or some other things for our children. I got so excited I called her doctor because I actually thought she heard of it. Well guess what none of her doctors have and now they are requesting some type of info so they can look into it and then request if from the insurance company. Apparently the insurance company hasnt heard of these things being used for kids either and while they arent saying no to it they need more info from the doc. Now I know this can help my daughter who gets such bad heat exaustion that it scares me...I mean it really scares me to see her just laying there not moving jsut looking at me with such a blank look. Anyway, I know you guys have given all this info before but if you could be so kind as to repeat it please I would truly appreciate it. > > mother to (who just turned four on 6/5, thank you god) Mito Complex one. > > Thanks again and sorry to bother you. Quote Link to comment Share on other sites More sharing options...
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