Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Hi , I don't have the answers to your questions, but I just wanted to say that at least this doc knew better than to give RAI to a patient with TED! Wish I would've had a doc who knew that! God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 I went to the endo on Tuesday and once again felt like I need to find a new doc. This appt was her last chance in my mind. She is keeping me on my current BRT dosage-10mg MMI (5mg twice and day) and .05mg Synthroid. My last labs (07/30/02 and getting more today) were: FT3 2.8 Range 2.3-4.2 FT4 1.1 Range .61-1.76 TSH .039 Range .350-5.5 TSI 87 Range <130% As for my antibodies, she said they weren't there which didn't make any sense to me as '87' looks like something is there. She also mentioned that she didn't want to do RAI because of my eyes. My response was that wasn't an option I would want anyway and she said " Well, no, if not for your eyes that is what I would want to do " . Hello...forgetting that it is my body?! She also stated that if I wanted to get pregnant soon I need to consider surgery because I can't take the PTU. Anyway, I'd like to find a doc that would work with me to maybe get my system used to PTU by starting me out slowly on a very small dose while taking antihistamines at the same time to help with the inevitable rash that accompanies my PTU consumption. So, my questions are these: 1. Does anyone know of a good doc (doesn't have to be endo) in land? 2. At what point during BRT does one lower their dosage and how is it done? (i.e. lowering both drugs or only one and which one at that?) Thanks, in land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 , I'm not sure what you're not liking! Having an endo who will try B&R is amazing to me, who knows that RAI is not good with eye involvement, too. And I don't know how you are feeling, but your numbers sure look good to me, like you're having success with the B&R. My endo finally, after 7 years, has learned not to mention RAI to me anymore--but I know he still feels that I should have had it! I have him trained, now, to order FT4--but he used to order only the totals, and TSH, and FTI sometimes. Terry > > Reply-To: graves_support > Date: Fri, 30 Aug 2002 14:35:32 -0000 > To: graves_support > Subject: Discouraging Endo Appt > > I went to the endo on Tuesday and once again felt like I need to find > a new doc. This appt was her last chance in my mind. She is keeping > me on my current BRT dosage-10mg MMI (5mg twice and day) and .05mg > Synthroid. My last labs (07/30/02 and getting more today) were: > > FT3 2.8 Range 2.3-4.2 > FT4 1.1 Range .61-1.76 > TSH .039 Range .350-5.5 > TSI 87 Range <130% > > As for my antibodies, she said they weren't there which didn't make > any sense to me as '87' looks like something is there. She also > mentioned that she didn't want to do RAI because of my eyes. My > response was that wasn't an option I would want anyway and she > said " Well, no, if not for your eyes that is what I would want to > do " . Hello...forgetting that it is my body?! She also stated that > if I wanted to get pregnant soon I need to consider surgery because I > can't take the PTU. > > Anyway, I'd like to find a doc that would work with me to maybe get > my system used to PTU by starting me out slowly on a very small dose > while taking antihistamines at the same time to help with the > inevitable rash that accompanies my PTU consumption. > > So, my questions are these: > 1. Does anyone know of a good doc (doesn't have to be endo) in > land? > 2. At what point during BRT does one lower their dosage and how is > it done? (i.e. lowering both drugs or only one and which one at > that?) > > Thanks, > in land > > > > ------------------------------------- > 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 August 30, 2002 Report Share Posted August 30, 2002 Hi , Just my opinion here. Those numbers could possibly be the tiniest bit low ( hypo) for you. We are all different , but it is certainly worth looking into . It is all in how you FEEL. You are still new at this, and the FIRST thing you need to do is find your own personal set point. Since you have been on such a roller coaster, you may want to stick with the Tap for right now, until you are stable for awhile, and have time to find that set point where you feel great. THEN you would be in much better shape to make the transition to PTU, with experience under your belt and a healthier body . A lot of damage has been done to every cell in your body, and it takes TIME to heal. Since you want to be healthy before having a baby, this will not add any time to the big picture, but could possibly save you some time. Switching meds while you are still sick could turn into a big mess, and very easily an additional 6 months before the healing can START. Maybe, maybe not, but it is a risk. -Pam L - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 I guess what is bothering me are the things she says about remission, that it is not likely for me and that she isn't ready to take me off the meds completely. I think she is planning on saying at some point, " Okay, you've been on the meds for x amount of time now, let's take you off and see what happens. " I would hope she would try to wean me slowly. And she doesn't want to seem to work with me on the PTU issue either. Part of me wants to just start trying to wean myself onto the PTU up to the appropriate dose without telling her and see what happens. She didn't like when I cut my dose of MMI prior to starting the BRT and I was hypo and feeling awful but I did it anyway and told her after the fact. And wasn't her comment about the antibodies incorrect? I am feeling okay, much better than a few months ago when I was being overmedicated. Maybe I'll give her another chance. She doesn't want to see me for 3 months but has given me a lab slip in the mean time to make sure things are going okay for me and my levels. Thanks for your input! Terry ding wrote:, I'm not sure what you're not liking! Having an endo who will try B&R is amazing to me, who knows that RAI is not good with eye involvement, too. And I don't know how you are feeling, but your numbers sure look good to me, like you're having success with the B&R. My endo finally, after 7 years, has learned not to mention RAI to me anymore--but I know he still feels that I should have had it! I have him trained, now, to order FT4--but he used to order only the totals, and TSH, and FTI sometimes. Terry > > Reply-To: graves_support > Date: Fri, 30 Aug 2002 14:35:32 -0000 > To: graves_support > Subject: Discouraging Endo Appt > > I went to the endo on Tuesday and once again felt like I need to find > a new doc. This appt was her last chance in my mind. She is keeping > me on my current BRT dosage-10mg MMI (5mg twice and day) and .05mg > Synthroid. My last labs (07/30/02 and getting more today) were: > > FT3 2.8 Range 2.3-4.2 > FT4 1.1 Range .61-1.76 > TSH .039 Range .350-5.5 > TSI 87 Range <130% > > As for my antibodies, she said they weren't there which didn't make > any sense to me as '87' looks like something is there. She also > mentioned that she didn't want to do RAI because of my eyes. My > response was that wasn't an option I would want anyway and she > said " Well, no, if not for your eyes that is what I would want to > do " . Hello...forgetting that it is my body?! She also stated that > if I wanted to get pregnant soon I need to consider surgery because I > can't take the PTU. > > Anyway, I'd like to find a doc that would work with me to maybe get > my system used to PTU by starting me out slowly on a very small dose > while taking antihistamines at the same time to help with the > inevitable rash that accompanies my PTU consumption. > > So, my questions are these: > 1. Does anyone know of a good doc (doesn't have to be endo) in > land? > 2. At what point during BRT does one lower their dosage and how is > it done? (i.e. lowering both drugs or only one and which one at > that?) > > Thanks, > in land --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Plus... IF you are slightly hypo for YOU, this makes the eyes worse. It causes us to be more swollen ...everywhere. If you are feeling great, ignore everything I said about 'set point'. :-) I just hate to see others go though years of 'close but not quite right'. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 , Why do you want to switch to PTU? How long have you been on BRT? I think if you have antibodies, remission is less likely btw. I know we had a conversation a while back, when it confused me totally, about the numbers being in the normal range for antibodies, and how deceptive that is. What I recall Elaine explaining is that they decide what the normal ranges are by testing a lot of hospital personnel, who are supposedly healthy. But that for someone with GD, having antibodies that register above that magical <2 range means that we have active GD. For someone without GD, that may not be the case. I'm not great with the medical stuff so my explanation my not be right. But if it's not someone else will kick in with the correction, I'm sure. Terry > > Reply-To: graves_support > Date: Fri, 30 Aug 2002 11:49:59 -0700 (PDT) > To: graves_support > Subject: Re: Discouraging Endo Appt > > > I guess what is bothering me are the things she says about remission, that it > is not likely for me and that she isn't ready to take me off the meds > completely. I think she is planning on saying at some point, " Okay, you've > been on the meds for x amount of time now, let's take you off and see what > happens. " I would hope she would try to wean me slowly. And she doesn't want > to seem to work with me on the PTU issue either. Part of me wants to just > start trying to wean myself onto the PTU up to the appropriate dose without > telling her and see what happens. She didn't like when I cut my dose of MMI > prior to starting the BRT and I was hypo and feeling awful but I did it anyway > and told her after the fact. And wasn't her comment about the antibodies > incorrect? > > I am feeling okay, much better than a few months ago when I was being > overmedicated. Maybe I'll give her another chance. She doesn't want to see > me for 3 months but has given me a lab slip in the mean time to make sure > things are going okay for me and my levels. > > Thanks for your input! > > > > Terry ding wrote:, > > I'm not sure what you're not liking! Having an endo who will try B&R is > amazing to me, who knows that RAI is not good with eye involvement, too. And > I don't know how you are feeling, but your numbers sure look good to me, > like you're having success with the B&R. > > My endo finally, after 7 years, has learned not to mention RAI to me > anymore--but I know he still feels that I should have had it! I have him > trained, now, to order FT4--but he used to order only the totals, and TSH, > and FTI sometimes. > > > Terry > >> >> Reply-To: graves_support >> Date: Fri, 30 Aug 2002 14:35:32 -0000 >> To: graves_support >> Subject: Discouraging Endo Appt >> >> I went to the endo on Tuesday and once again felt like I need to find >> a new doc. This appt was her last chance in my mind. She is keeping >> me on my current BRT dosage-10mg MMI (5mg twice and day) and .05mg >> Synthroid. My last labs (07/30/02 and getting more today) were: >> >> FT3 2.8 Range 2.3-4.2 >> FT4 1.1 Range .61-1.76 >> TSH .039 Range .350-5.5 >> TSI 87 Range <130% >> >> As for my antibodies, she said they weren't there which didn't make >> any sense to me as '87' looks like something is there. She also >> mentioned that she didn't want to do RAI because of my eyes. My >> response was that wasn't an option I would want anyway and she >> said " Well, no, if not for your eyes that is what I would want to >> do " . Hello...forgetting that it is my body?! She also stated that >> if I wanted to get pregnant soon I need to consider surgery because I >> can't take the PTU. >> >> Anyway, I'd like to find a doc that would work with me to maybe get >> my system used to PTU by starting me out slowly on a very small dose >> while taking antihistamines at the same time to help with the >> inevitable rash that accompanies my PTU consumption. >> >> So, my questions are these: >> 1. Does anyone know of a good doc (doesn't have to be endo) in >> land? >> 2. At what point during BRT does one lower their dosage and how is >> it done? (i.e. lowering both drugs or only one and which one at >> that?) >> >> Thanks, >> in land > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 , ***She didn't like when I cut my dose of MMI prior to starting the BRT and I was hypo and feeling awful but I did it anyway and told her after the fact. And wasn't her comment about the antibodies incorrect? *** Non compliance is the largest reason for failure with ATDs. This is listed even on the package insert. Your doctor is very aware of this, and had cause for concern. She knows you are new at this, and has probably had other patients really mess up. IF you reduced your dose even a day BEFORE you had labs done, then this puts the doctor in a position of having no idea at all what is really happening here. But...I think I remember you did have labs first ??? Are you getting labs every 4 weeks ? It takes 3 1/2 weeks to see what a given dose will do. Changing a dose any sooner simply makes the patient go up and down with no way of knowing what the right dose really is. -Pam L - who job got delayed till late today, so here I am with time on my hands and posting toooo much :-) Yes, you want the antibodies at <2 before ever going completely off the drugs. Quote Link to comment Share on other sites More sharing options...
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