Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Thanks for response, Sandy, I have been on meds for approx. 3 months and have moved from 40 mgs. carbimazole to 20 mgs to 5mgs. 29th. Sept Blood tests results show TSH 19.67, FT4 5.0, T3 1.6. Can't really tell how my health is at moment apart from garbage some days, better others. I will hold out against RAI at all costs. Consultant is a specialist (Endocrine Professor), Dr is more of a general practitioner...thats Scotland for you!!! Take care, Bob Q > > Message: 7 > Date: Wed, 08 Oct 2003 22:53:56 +0000 > > Subject: Glowing in the Dark??? > > Hi out there, > > had my 2nd. visit with my consultant today. Blood results are T4=5.0, > T3=1.6 (bloods were taken on a day when I felt good!!!) and as a consequence > consultant has dropped my Carbimazole from 20 mgs daily to just 5mg daily > and wants me to stop my Beta Blocker ( 80mgs. Half Inderal sustained > release). > > Then she hit me with the RAI option. I'm not sure how I feel about this > because A) seems weird to suggest blasting my thyroid then needing thyroxine > for the rest of my life she offered the alternative treatment of well > observed Carbimazole therapy for 12-18 months (or as required), then trying > to drop the meds entirely (or at leat until my thyroid becomes hyper again). > > I also have an underlying and as yet undiagnosed neurological condition > which may be Parkinsons Disease and I need to get the thyroid under control > to allow for an accurate diagnosis of this second critical illness. > > I am looking for a simple straight answer to the question " Does RAI work any > better than ATDs and is it truly safe? " > > Hmmm?? > > Thanks in advance. > > Bob Q (Scotland) > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 8 > Date: Wed, 8 Oct 2003 17:34:44 -0500 > > Subject: Re: Glowing in the Dark??? > > Can you refresh my memory on how long you've been on the meds? I noticed you > mentioned it's only your second visit? I noticed that your visit states that > only T3 and T4 where checked. Do they not have FT3 and FT4 tests there? > > I am definately against RAI. I know here in the U.S. it's customary for most > dr's to say RAI is the way to go, but I just don't happen to agree. I've had > 3 dr's tell me this 'theory' which I'm sure they themselves have not done. I > personally think that a drop from 20 to 5 mgs of Anti Thyroid drugs is a > little too steep for my comfort. I take something for the heart palpitations > which also takes care of my bp too, but I've also been told those are not good > to just 'stop cold turkey'. Is a Consultant the same as a Dr? > > Sandy~Houston > > Glowing in the Dark??? > > > Hi out there, > > had my 2nd. visit with my consultant today. Blood results are T4=5.0, > T3=1.6 (bloods were taken on a day when I felt good!!!) and as a consequence > consultant has dropped my Carbimazole from 20 mgs daily to just 5mg daily > and wants me to stop my Beta Blocker ( 80mgs. Half Inderal sustained > release). > > Then she hit me with the RAI option. I'm not sure how I feel about this > because A) seems weird to suggest blasting my thyroid then needing thyroxine > for the rest of my life she offered the alternative treatment of well > observed Carbimazole therapy for 12-18 months (or as required), then trying > to drop the meds entirely (or at leat until my thyroid becomes hyper again). > > I also have an underlying and as yet undiagnosed neurological condition > which may be Parkinsons Disease and I need to get the thyroid under control > to allow for an accurate diagnosis of this second critical illness. > > I am looking for a simple straight answer to the question " Does RAI work any > better than ATDs and is it truly safe? " > > Hmmm?? > > Thanks in advance. > > Bob Q (Scotland) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Hi Bob, I'm in Scotland also. Whereabouts are you? I'm in Aberdeen. We really need to know your labs ranges as well as the result, as they are different for each lab. However, if I look at those results using my lab ranges (which are pretty similar - but not the same - around the UK) you are very hypOthyroid. Was it just T3 or Free T3? When my T3 gets tested it is always Free T3. For your info my lab ranges are TSH: .35 - 3.3 ; FT4: 10 - 25 and FT3: 3 - 7. The fact that your TSH is way above range, and your FT4 (? FT3) are below range are what show you as hypothyroid. This is why you had to take a big drop in your Carbimazole. You have clearly responded to the meds well, but been poorly monitored. Have you had blood tests every month? If so can you give us a history of your results? There is no need to consider RAI. It is not truly safe - as you have already heard. And it doesn't work any better than ATDs, at least not for you - all it does is render you permanently hypothyroid (you are hypo at the moment, but that can be fixed with the dose reduction!) and give you a lifetime on replacement thyroid hormone. And it will probably take at least 12 - 18 months of carefully observed thyroid hormone supplementation before you become stable again. Make sure you get blood tests at least monthly at the moment. Get your GP to run them. You may be interested in my website at http://www.zoe73.net/thyroid.htm which shows how ATDs CAN be effective (I'm not totally well, but I'm much better) and my recent post at mediboard.com http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=005997 where I look back at how far I've come in the year I've been on Carbimazole. You need to be involved in your healthcare (which is why you're here now), and learn learn learn so you can take on your consultant and get a good result. Out of curiosity, have you seen the same consultant on both occasions? I keep getting a different one. I have my 5th visit to the clinic in a couple of weeks and so far have seen a different doc each time which I am not happy about. I hope I get teh same one as I saw last time, as she was very very good (the others have varied from OK through hopeless to completely incompetant). Best wishes, Zoë > Thanks for response, Sandy, > > I have been on meds for approx. 3 months and have moved from 40 mgs. > carbimazole to 20 mgs to 5mgs. > > 29th. Sept Blood tests results show TSH 19.67, FT4 5.0, T3 1.6. > > Can't really tell how my health is at moment apart from garbage some days, > better others. I will hold out against RAI at all costs. > > Consultant is a specialist (Endocrine Professor), Dr is more of a general > practitioner...thats Scotland for you!!! > > Take care, > > Bob Q > > > > Message: 7 > > Date: Wed, 08 Oct 2003 22:53:56 +0000 > > From: Quilietti <magicbobquilietti@b...> > > Subject: Glowing in the Dark??? > > > > Hi out there, > > > > had my 2nd. visit with my consultant today. Blood results are T4=5.0, > > T3=1.6 (bloods were taken on a day when I felt good!!!) and as a consequence > > consultant has dropped my Carbimazole from 20 mgs daily to just 5mg daily > > and wants me to stop my Beta Blocker ( 80mgs. Half Inderal sustained > > release). > > > > Then she hit me with the RAI option. I'm not sure how I feel about this > > because A) seems weird to suggest blasting my thyroid then needing thyroxine > > for the rest of my life she offered the alternative treatment of well > > observed Carbimazole therapy for 12-18 months (or as required), then trying > > to drop the meds entirely (or at leat until my thyroid becomes hyper again). > > > > I also have an underlying and as yet undiagnosed neurological condition > > which may be Parkinsons Disease and I need to get the thyroid under control > > to allow for an accurate diagnosis of this second critical illness. > > > > I am looking for a simple straight answer to the question " Does RAI work any > > better than ATDs and is it truly safe? " > > > > Hmmm?? > > > > Thanks in advance. > > > > Bob Q (Scotland) > > > > > > > > ______________________________________________________________________ __ > > ______________________________________________________________________ __ > > > > Message: 8 > > Date: Wed, 8 Oct 2003 17:34:44 -0500 > > From: " Sandy " <starz@h...> > > Subject: Re: Glowing in the Dark??? > > > > Can you refresh my memory on how long you've been on the meds? I noticed you > > mentioned it's only your second visit? I noticed that your visit states that > > only T3 and T4 where checked. Do they not have FT3 and FT4 tests there? > > > > I am definately against RAI. I know here in the U.S. it's customary for most > > dr's to say RAI is the way to go, but I just don't happen to agree. I've had > > 3 dr's tell me this 'theory' which I'm sure they themselves have not done. I > > personally think that a drop from 20 to 5 mgs of Anti Thyroid drugs is a > > little too steep for my comfort. I take something for the heart palpitations > > which also takes care of my bp too, but I've also been told those are not good > > to just 'stop cold turkey'. Is a Consultant the same as a Dr? > > > > Sandy~Houston > > > > Glowing in the Dark??? > > > > > > Hi out there, > > > > had my 2nd. visit with my consultant today. Blood results are T4=5.0, > > T3=1.6 (bloods were taken on a day when I felt good!!!) and as a consequence > > consultant has dropped my Carbimazole from 20 mgs daily to just 5mg daily > > and wants me to stop my Beta Blocker ( 80mgs. Half Inderal sustained > > release). > > > > Then she hit me with the RAI option. I'm not sure how I feel about this > > because A) seems weird to suggest blasting my thyroid then needing thyroxine > > for the rest of my life she offered the alternative treatment of well > > observed Carbimazole therapy for 12-18 months (or as required), then trying > > to drop the meds entirely (or at leat until my thyroid becomes hyper again). > > > > I also have an underlying and as yet undiagnosed neurological condition > > which may be Parkinsons Disease and I need to get the thyroid under control > > to allow for an accurate diagnosis of this second critical illness. > > > > I am looking for a simple straight answer to the question " Does RAI work any > > better than ATDs and is it truly safe? " > > > > Hmmm?? > > > > Thanks in advance. > > > > Bob Q (Scotland) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2003 Report Share Posted October 10, 2003 Hi Zoe, thanks for taking the trouble to respond. I visited your site and enjoyed!!! Downloaded, and will use, the Excelchart. One quibble...how can anybody who adores Cary Grant also have a soft spot for Mel Gibson??? I live in ish borders near Kelso. we have a good local hospital and yes, so far (twice) i've seen same consultant. My monitoring has probably not been poor as you suggest, but messed up due to holidays (mine and consultants). My next blood test is 27/10/03 and consultant has promised to get results to me pronto. My results to date are 11th. Aug. FT4 = 7 (8-21), T3 = 1.4 (1.1-2.8), TSH = 0.04, TRAB = 5.2 (0-1.50) and 29th. Sept. TSH 19.= 19.67, FT4 = 5.0, T3 = 1.6. Unless requested, it is T3 not FT3 being tested for down here. The 5 mgs dose of ATDs seems to be fine at moment but I predict another swing to be seen in my next test. I really need to get the thyroid tuned up so that i clear the way for neurological investigation into my other underlying condition (suspected Parkinsons...but I hope not!!!). keep well you folks out there, Bob Q. Hi Bob, > > I'm in Scotland also. Whereabouts are you? I'm in Aberdeen. > > We really need to know your labs ranges as well as the result, as > they are different for each lab. However, if I look at those results > using my lab ranges (which are pretty similar - but not the same - > around the UK) you are very hypOthyroid. Was it just T3 or Free T3? > When my T3 gets tested it is always Free T3. > > For your info my lab ranges are TSH: .35 - 3.3 ; FT4: 10 - 25 and > FT3: 3 - 7. The fact that your TSH is way above range, and your FT4 > (? FT3) are below range are what show you as hypothyroid. > > This is why you had to take a big drop in your Carbimazole. > > You have clearly responded to the meds well, but been poorly > monitored. Have you had blood tests every month? If so can you give > us a history of your results? > > There is no need to consider RAI. It is not truly safe - as you have > already heard. And it doesn't work any better than ATDs, at least not > for you - all it does is render you permanently hypothyroid (you are > hypo at the moment, but that can be fixed with the dose reduction!) > and give you a lifetime on replacement thyroid hormone. And it will > probably take at least 12 - 18 months of carefully observed thyroid > hormone supplementation before you become stable again. > > Make sure you get blood tests at least monthly at the moment. Get > your GP to run them. > > You may be interested in my website at > http://www.zoe73.net/thyroid.htm which shows how ATDs CAN be > effective (I'm not totally well, but I'm much better) and my recent > post at mediboard.com > > http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=005997 > > where I look back at how far I've come in the year I've been on > Carbimazole. > > You need to be involved in your healthcare (which is why you're here > now), and learn learn learn so you can take on your consultant and > get a good result. > > Out of curiosity, have you seen the same consultant on both > occasions? I keep getting a different one. I have my 5th visit to the > clinic in a couple of weeks and so far have seen a different doc each > time which I am not happy about. I hope I get teh same one as I saw > last time, as she was very very good (the others have varied from OK > through hopeless to completely incompetant). > > Best wishes, > > Zoë Quote Link to comment Share on other sites More sharing options...
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