Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Hi , I can't comment on the question as my kids are all grown, but if you could reset the date on your computer it would be easier to find your emails! Thanks, and welcome to the group. Terry > > Reply-To: graves_support > Date: Tue, 27 May 2003 02:08:50 -0000 > To: graves_support > Subject: PTU Questions > > I was diagnosed in April with Graves when my second child was 6 months > old (I was having the symptoms when he was 3-4 months old). > On my first visit with the endo, he put me on PTU 100 mg in the > morning and 50mg in the evening (low dose because I am breastfeeding). > The doctors office called after with my bloodwork and said that the > levels were high and that the 150 mg might not have any visible > effect. So, I have to go in again in 2 weeks for more blood work. My > worry is that they will have to significantly up my dose. I am > currently breastfeeding and am wondering if there are other moms out > there breastfeeding while on PTU. What dosage are you taking? I am > so worried that by taking the PTU and breastfeeding I'm unnecessarily > putting by baby boy at risk. (my endo did make sure to tell me to have > his thryoid levels checked every 4 weeks) My son is almost 8 months > old and I want to go a full year as I had with my daughter. > Thanks, > > > > > > ------------------------------------- > 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 7, 2003 Report Share Posted June 7, 2003 Hi , Welcome. The board is very slow on the weekends, and we do have other Mom's here that have experience. But they may not see your post till the first of the week. In the meantime, don't panic. There is much for you to learn before you allow any change in dose. Go to the home page for this group and there should be a lot of starting information . You say you started PTU in April. I wonder how many weeks between the first PTU and the lab work in question ? You need at least 6 weeks for the reading to show what is going on. You need copies of your starting lab work AND this one. You need to know exactly what test they are judging this statement on. IF it is based on TSH. .. know that this is the WRONG test for adjusting any anti thyroid drug ( ATD ). A common mistake doctors make if they do not use ATDs on a regular basis. Since YOU have managed to get on the drugs without the hassles some face, because of your baby, this might be the case. You are also going to want a clear diagnosis using a TSI antibody test ! It may not be Graves, at all. The others will go through that. I " really' should not be on this darn computer right now . :-) The correct way to take PTU is in equally split doses during the day... every EIGHT HOURS. You can go to the manufactures web site to confirm this. Avoiding high iodine foods, keeping my iodine intake below 150 mcg. per day, and avoiding all chemical food additives allowed me to take HALF the amount of PTU, I had been on for a very long time. -Pam L - 3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU (despite an incompetent endo ! ), improved lifestyle, excellent nutrition, herbs, and looking at the big picture. Pills alone only help the symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Welcome : I just want to tell you a couple of things that I found out finally...after taking PTU for 24 months. These few things have changed my life, meaning I am feeling so much better. 1) Some MDs just don't use PTU for many patients & they don't know how this drug " must " be taken to be effective. If you are currently on 150mg. a day (a good starting dosage), you must take it 50mg. a day every 8 hours. Try to do it at exactly the same time every day. You will notice a change within a few days....to the better. 2) If your doc. is relying only on the TSH test, then that's another problem...many MDs have so few people who are Hyper or have Graves, and they don't realize that the TSH test results are what I consider " useless, inconsistent & often inaccurate " in regards to what's really going on in your body. For one thing, it can take 3+ months before the PTU results will change at all, regardless of what medication you are taking. 3) Make sure your doctor (you may have to change) does these tests....fT3 (free T3), fT4 (free T4), TSH, and at least 2 times a year also the TSI. The TSI will help confirm whether you have Graves, or whether it is something else causing your thyroid to be hyper. (I had to fight to get a doc to do a TSI...reason was " only that he had never ordered that test before & he didn't like dealing with (me) someone who knew more about this than he did. 4) I also had test after test showing the same thing, to UP to dosage of PTU. I was once asked to take 300mg. a day (100mg. every 8 hours), I did this and within 1 day I wasn't able to get out of bed without someone shaking me to wake up. It was way too much medication. **Since I have gone to exactly every 8 hours of 50mg. 3 times a day, I am starting to stabilize. I don't have all of the answers, by any means. Do please check the " files " section of this web site and also the " home " page for more info. And even if your doc says you have to take a higher dosage...if you try that out....you can decide what makes you feel best. 5) Please post ALL of your test results here, and members of the group...including the wonderful moderator Elaine , can assist you in seeing what it is indicating & suggest adjustments. 6) This is a hard thing...but legally you have a right to a copy of every test that is taken...so ask your doctor's office to make you photocopies of all test results. (I had to threaten to get my test results...but they had to give them to me legally. I think some MDs don't want us to have the test results due to a (a) control, and ( many of them don't really know how to interpret any results other than the mediocre TSH which doesn't give any reliable information for people with Graves. All the best, Ron > I was diagnosed in April with Graves when my second child was 6 months > old (I was having the symptoms when he was 3-4 months old). > On my first visit with the endo, he put me on PTU 100 mg in the > morning and 50mg in the evening (low dose because I am breastfeeding). > The doctors office called after with my bloodwork and said that the > levels were high and that the 150 mg might not have any visible > effect. So, I have to go in again in 2 weeks for more blood work. My > worry is that they will have to significantly up my dose. I am > currently breastfeeding and am wondering if there are other moms out > there breastfeeding while on PTU. What dosage are you taking? I am > so worried that by taking the PTU and breastfeeding I'm unnecessarily > putting by baby boy at risk. (my endo did make sure to tell me to have > his thryoid levels checked every 4 weeks) My son is almost 8 months > old and I want to go a full year as I had with my daughter. > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Hi - This is a topic that has caused me so much turmoil. My son was born 2 years ago and I only nursed him for 2 weeks. My endo said it was perfectly safe to nurse him on PTU but then he was in the NICU after birth and the NICU nurses were looking in their drug books to see if it was safe for me to nurse him. I couldn't get an answer in the hospital that the PTU was 100% safe. I was off my PTU (50 mg.) most of my pregnancy but the docs told me to start it up the day after delivering my son. I wish I could go back and do things differently. I don't plan on having any more children and I really regret that I didn't nurse him longer than the 2 weeks. I just couldn't take the risk of the meds passing through my milk to him since I was getting different answers from the medical community. I don't think I needed to start up the PTU immediately. I wish I would have asked more questions but I was just so overwhelmed with all that was happening (c-section, baby in NICU...) It was really hard for me to give him that first bottle of formula. Sometimes I think it's best that he didn't have the risk of the meds in his system but then I think he didn't get all the great benefits of nursing. I doubt I'll ever let this issue go in my mind...it's a really tough decision and I understand how you may feel. I think it's great you got to nurse 8 months! I hope you can work this out so you don't have any regrets like I do. We all want what's best for our children...I guess that's why I just can't let this issue go! Best of luck! I am > currently breastfeeding and am wondering if there are other moms out > there breastfeeding while on PTU. What dosage are you taking? I am > so worried that by taking the PTU and breastfeeding I'm unnecessarily > putting by baby boy at risk. (my endo did make sure to tell me to have > his thryoid levels checked every 4 weeks) My son is almost 8 months > old and I want to go a full year as I had with my daughter. > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Hi Ron, Did you ever decide who to see? Terry > > Reply-To: graves_support > Date: Mon, 09 Jun 2003 00:20:55 -0000 > To: graves_support > Subject: Re: PTU Questions > > Welcome : > > I just want to tell you a couple of things that I found > out finally...after taking PTU for 24 months. These > few things have changed my life, meaning I am > feeling so much better. > > 1) Some MDs just don't use PTU for many patients > & they don't know how this drug " must " be taken > to be effective. If you are currently on 150mg. a > day (a good starting dosage), you must take it > 50mg. a day every 8 hours. Try to do it at exactly > the same time every day. You will notice a change > within a few days....to the better. > > 2) If your doc. is relying only on the TSH test, then > that's another problem...many MDs have so few > people who are Hyper or have Graves, and they > don't realize that the TSH test results are what I > consider " useless, inconsistent & often inaccurate " > in regards to what's really going on in your body. > For one thing, it can take 3+ months before the > PTU results will change at all, regardless of what > medication you are taking. > > 3) Make sure your doctor (you may have to change) > does these tests....fT3 (free T3), fT4 (free T4), TSH, > and at least 2 times a year also the TSI. The TSI > will help confirm whether you have Graves, or > whether it is something else causing your thyroid > to be hyper. (I had to fight to get a doc to do a > TSI...reason was " only that he had never ordered > that test before & he didn't like dealing with (me) > someone who knew more about this than he did. > > 4) I also had test after test showing the same thing, > to UP to dosage of PTU. I was once asked to take > 300mg. a day (100mg. every 8 hours), I did this and > within 1 day I wasn't able to get out of bed without > someone shaking me to wake up. It was way too > much medication. **Since I have gone to exactly > every 8 hours of 50mg. 3 times a day, I am starting > to stabilize. > > I don't have all of the answers, by any means. Do > please check the " files " section of this web site > and also the " home " page for more info. > > And even if your doc says you have to take a higher > dosage...if you try that out....you can decide what > makes you feel best. > > 5) Please post ALL of your test results here, and > members of the group...including the wonderful > moderator Elaine , can assist you in seeing > what it is indicating & suggest adjustments. > > 6) This is a hard thing...but legally you have a right > to a copy of every test that is taken...so ask your > doctor's office to make you photocopies of all > test results. (I had to threaten to get my test > results...but they had to give them to me legally. > I think some MDs don't want us to have the test > results due to a (a) control, and ( many of them > don't really know how to interpret any results > other than the mediocre TSH which doesn't give > any reliable information for people with Graves. > > All the best, > > Ron > > >> I was diagnosed in April with Graves when my second child > was 6 months >> old (I was having the symptoms when he was 3-4 months old). >> On my first visit with the endo, he put me on PTU 100 mg in the >> morning and 50mg in the evening (low dose because I am > breastfeeding). >> The doctors office called after with my bloodwork and said that > the >> levels were high and that the 150 mg might not have any > visible >> effect. So, I have to go in again in 2 weeks for more blood > work. My >> worry is that they will have to significantly up my dose. I am >> currently breastfeeding and am wondering if there are other > moms out >> there breastfeeding while on PTU. What dosage are you > taking? I am >> so worried that by taking the PTU and breastfeeding I'm > unnecessarily >> putting by baby boy at risk. (my endo did make sure to tell me > to have >> his thryoid levels checked every 4 weeks) My son is almost 8 > months >> old and I want to go a full year as I had with my daughter. >> Thanks, >> > > > > ------------------------------------- > 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...
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