Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Claudine No, there is no way my Dr. would allow me to take shots everyday....really it's not up to him anyway, it's up to the government who's paying for it.....and they will only pay for the standard treatment. The question came up when I met with the health worker to show me how to do injections....she asked what I weighed, then said I'd be doing the whole shot at once....like I said it's a dial-a-dose so it could be halved. But like you, I'm not sure if that would be enough interferon at once if I halved it. Just was curious about it. I agree it's crazy we don't have the peg yet....but I came across one person who jumped through hoops to get on a trial using peg....so I guess it's coming soon. Carol claudine intexas wrote: > Hi Carol, > I'll be interested in seeing what Doc has to say about this. It's > a topic that used to come up a lot before the pegyalted interferon > was available. I know at one time (LONG time ago) he recommended > daily injections of the old interferon to me, but it's the splitting > up of your weekly dose that I'm not too sure of. Could you get your > doctor to prescribe the interferon at higher than that old 3mu, 3 > times a week? There is overfill, but I don't know if it's enough to > make a difference. Is there ANY possibility he would prescribe it to > you DAILY since you can't get the peg there? It's really crazy. I'm > sure in England they are using the peg! (I think! Isn't that what you > were on Sylv?) > Good luck! > Claudine > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Claudine No, there is no way my Dr. would allow me to take shots everyday....really it's not up to him anyway, it's up to the government who's paying for it.....and they will only pay for the standard treatment. The question came up when I met with the health worker to show me how to do injections....she asked what I weighed, then said I'd be doing the whole shot at once....like I said it's a dial-a-dose so it could be halved. But like you, I'm not sure if that would be enough interferon at once if I halved it. Just was curious about it. I agree it's crazy we don't have the peg yet....but I came across one person who jumped through hoops to get on a trial using peg....so I guess it's coming soon. Carol claudine intexas wrote: > Hi Carol, > I'll be interested in seeing what Doc has to say about this. It's > a topic that used to come up a lot before the pegyalted interferon > was available. I know at one time (LONG time ago) he recommended > daily injections of the old interferon to me, but it's the splitting > up of your weekly dose that I'm not too sure of. Could you get your > doctor to prescribe the interferon at higher than that old 3mu, 3 > times a week? There is overfill, but I don't know if it's enough to > make a difference. Is there ANY possibility he would prescribe it to > you DAILY since you can't get the peg there? It's really crazy. I'm > sure in England they are using the peg! (I think! Isn't that what you > were on Sylv?) > Good luck! > Claudine > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Carol, I guess that is the drawback of socialized medicine. The government gets to choose how you are treated! Well, I do know people who have done exactly what you are thinking about doing! If it were me I'd do the whole dose the first time though. And, if nothing else, this should either slow things way down in your liver, or stop progression, until the peg becomes available to you. And it's not like the old combo never works - it did work for some, even a few 1b's here and there. So you never know - maybe you will be one of them! Good luck! Claudine PS: He couldn't even prescribe it at 5 mu 3X a week???? That is not an unusual dose. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Carol, I guess that is the drawback of socialized medicine. The government gets to choose how you are treated! Well, I do know people who have done exactly what you are thinking about doing! If it were me I'd do the whole dose the first time though. And, if nothing else, this should either slow things way down in your liver, or stop progression, until the peg becomes available to you. And it's not like the old combo never works - it did work for some, even a few 1b's here and there. So you never know - maybe you will be one of them! Good luck! Claudine PS: He couldn't even prescribe it at 5 mu 3X a week???? That is not an unusual dose. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Welcome back claudine, dont post here much but do read lots.. .. and love to hear from you... Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Hi Claudine.... Just FYI, my TSH was down to 1.5 when I finished treatment and stayed there as long as I was still employed. Now I have no idea what my counts are. My liver guy gave me the names and phone numbers of a couple free clinics, but when I called them, they don't do blood work...other than cheap little tests (CBCs, etc.) and don't have the facilites or funding to deal with major problems. They basically deal with injuries, etc. that the homeless get and provide no medicines other than antibiotics. What a wonderful government we have that there is no health care for the unemployed or poor. Willem....are you sure you wouldn't marry me in name only so I could immigrate to Holland and get some medical care <g> Tatezi claudine intexas wrote: > > --- Tatezi <tatezi@...> wrote: > > Willem... > > > > After my 13 months on the old combo, I went through withdrawal type > > stuff. Felt awful, was jittery and jumpy, crummy tummy for the > > jitteriness and very tired but couldn't sleep. > > That could have been caused by your thyroid too, especially if it was > not well under control by the time you stopped treatment! > C > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 A TSH of 1.5 is good. Optimal TSH for women is 2. alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Yeah...I learned that here, from you guys. My doc had wanted to hold it at 5.0 and I founght with him over the fact I still wasn't feeling right and that newer research had shown wimmin needed a lower TSH so he upped my meds a tad and once we got it doen to 1.5 I felt better. But ofcourse I'm sure it's no longer there...been too long since I had any synthroid. wrote: > A TSH of 1.5 is good. Optimal TSH for women is 2. > > alley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hmm I would rather maintain TSH between 3-5 Dr Sharat Misra MD,DM,FACG A TSH of 1.5 is good. Optimal TSH for women is 2. alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Doc said <<Hmm I would rather maintain TSH between 3-5>> OK I only know what I've read online. Most of my info came from about.com and the links they provide there. alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 My blood tests always showed a TSH of 1.1 to 1.3 before it went to over 50 a couple weeks ago. Normal for my lab is .7 to 7.2. I think it all depends on your body, as what is " normal " for one person isn't necessary true for another.... Edie Re: Claudine > Doc said <<Hmm I would rather maintain TSH between 3-5>> > > OK I only know what I've read online. Most of my info came from > about.com and the links they provide there. > > alley > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 --- Doc <gidoc@...> wrote: > Hmm > I would rather maintain TSH between 3-5 > If my TSH gets that high I feel terrible! My TSH kept gradually going up and up from the 1 my old endocrinologist had gotten it to while I was on treatment, and was at 3.36 and I was experiencing a whole list of symptoms of hypothyroidism all over again. I felt like a textbook case of hypothyroidism. (Except for that cold thing - I'm always hot!) My PCP thought 3.36 was fine, but I went to an endocrinologist and he agreed that for some reason most women feel better if their TSH is around 2. And he said for some they feel better even with lower numbers. He was very good. Not only did he look at my blood tests and listen to my LONG list of complaints, he also found that my thyroid was still enlarged even with my " normal " 3.36 TSH (I was wondering why I always felt like I had a lump in my throat but hadn't even considered it was my thyroid!), and he felt my skin and hair, and could tell they were too dry. He debated whether to increase my dose of T4, or try supplementing with Cytomel, a T3 supplement. He finally decided to go with the T3, and I felt better within only a week. 6 weeks later when I went back my TSH was down to .59, and he was a little concerned he was overtreating, but I felt so much better he decided to wait and do more tests 6 weeks later. Then my TSH was at .09, so he decreased the dose of T3, and next time it was 1.69. I thought I felt better with it a little lower, so we've compromised some. I feel best if my TSH is right around 1. (By the way, low normal at my lab is .50) I just do NOT feel good when my TSH is over 2. Maybe this normal range for TSH was derived from what was normal for men? Maybe their needs are different from womens. Just a thought. Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 I agree, individual needs have to be considered and treat each case on its merit and not merely by the book. It is surprising how some people, men or women, feel good even when TSH is around 5-7. It is the nature of hypothyroidism which also makes a difference. Dr Sharat Misra MD,DM,FACG Re: Claudine --- Doc <gidoc@...> wrote: > Hmm > I would rather maintain TSH between 3-5 > If my TSH gets that high I feel terrible! My TSH kept gradually going up and up from the 1 my old endocrinologist had gotten it to while I was on treatment, and was at 3.36 and I was experiencing a whole list of symptoms of hypothyroidism all over again. I felt like a textbook case of hypothyroidism. (Except for that cold thing - I'm always hot!) My PCP thought 3.36 was fine, but I went to an endocrinologist and he agreed that for some reason most women feel better if their TSH is around 2. And he said for some they feel better even with lower numbers. He was very good. Not only did he look at my blood tests and listen to my LONG list of complaints, he also found that my thyroid was still enlarged even with my " normal " 3.36 TSH (I was wondering why I always felt like I had a lump in my throat but hadn't even considered it was my thyroid!), and he felt my skin and hair, and could tell they were too dry. He debated whether to increase my dose of T4, or try supplementing with Cytomel, a T3 supplement. He finally decided to go with the T3, and I felt better within only a week. 6 weeks later when I went back my TSH was down to .59, and he was a little concerned he was overtreating, but I felt so much better he decided to wait and do more tests 6 weeks later. Then my TSH was at .09, so he decreased the dose of T3, and next time it was 1.69. I thought I felt better with it a little lower, so we've compromised some. I feel best if my TSH is right around 1. (By the way, low normal at my lab is .50) I just do NOT feel good when my TSH is over 2. Maybe this normal range for TSH was derived from what was normal for men? Maybe their needs are different from womens. Just a thought. Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Hi Claudine I wondered why I wasn't seeing you post much the last few days, until I finally read the news on the internet....sounds like texas got hit very hard.....good news is they say the worst is over. Praying for you up north here where it's sunny and nice. Hugggs Carol claudine intexas wrote: > Thanks for letting us know. I've been worried about her, and our > power was out most of today and tonight due to flooding so I couldn't > even check the computer till now. I'm thankful just to know she is > actually IN a hospital! > Claudine > > --- <patriciajean@...> wrote: > > I talked w/Connie on the phone last nite at the hospital. She > > seemed in good spirits and not too uncomfortable. I just wanted to > > let yall know. > > > > alley > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Hi Claudine I wondered why I wasn't seeing you post much the last few days, until I finally read the news on the internet....sounds like texas got hit very hard.....good news is they say the worst is over. Praying for you up north here where it's sunny and nice. Hugggs Carol claudine intexas wrote: > Thanks for letting us know. I've been worried about her, and our > power was out most of today and tonight due to flooding so I couldn't > even check the computer till now. I'm thankful just to know she is > actually IN a hospital! > Claudine > > --- <patriciajean@...> wrote: > > I talked w/Connie on the phone last nite at the hospital. She > > seemed in good spirits and not too uncomfortable. I just wanted to > > let yall know. > > > > alley > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 Claudine, as I'm sure you know, many bugs live in the murky water! Don't forget your bottled water next time Glad it's not too bad for yall, but does that mean no ac in the daytime? alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 Claudine, as I'm sure you know, many bugs live in the murky water! Don't forget your bottled water next time Glad it's not too bad for yall, but does that mean no ac in the daytime? alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 Claudine, as I'm sure you know, many bugs live in the murky water! Don't forget your bottled water next time Glad it's not too bad for yall, but does that mean no ac in the daytime? alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 Claudine, as I'm sure you know, many bugs live in the murky water! Don't forget your bottled water next time Glad it's not too bad for yall, but does that mean no ac in the daytime? alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 --- <patriciajean@...> wrote: > Glad it's not too bad for yall, but does that mean no ac in the > daytime? YES!!!!! A nightmare! No a/c, no fan, no anything! I spent most of the time at the hospital with my grandmother. Not a fun place to be, but it was a great excuse to give to my husband for why I couldn't sit at home with him with no a/c or TV. However, we seem to be back to normal now - if we stop getting rain. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2002 Report Share Posted September 5, 2002 That's right...I'd forgotten about her hearing...somebody sure screwed up! This kind of stuff just gets me so angry. Noone should have to go without medicine. I just think that foks kept 'dropping the ball' in a lot of areas for Connie. It makes me sad to think of her and wonder if all this had to happen the way it did. I'm upset. I wish things were different. I'm still praying. luv, gee Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.