Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Here are Mark's results - DATE OF LAB WORK RESULTS RANGE UNITS DOCTOR'S COMMENTS/DOSAGES 11/19/2004 FASTING DIAGNOSED WITH GRAVES DISEASE - HYPERTHYROID T4 (THYROXINE) TOTAL 12.6 4.5 - 12.5 MCC/DL METHIMAZOLE- 10 MG TABS/2 TIMES PER DAY TSH 0.01 ..40 - 5.50 MIU/L PROPRANOLOL - 1 TAB/3 TIMES/DAY - 10 MG T3, FREE 920 230 - 420 PG/DI 1/7/2005 NON FASTING HE IS NOW HYPOTHYROID - DECREASE METHIMAZOLE T4, FREE 0.6 ..8 - 1.8 NG/DL METHIMAZOLE - 5MG/1 DAY TSH 2.37 ..40 - 5.50 MIU/L NOTE SAYS TSH FALSELY LOW T3, FREE 215 230-420 PG/DL PROPRANOLOL 2/28/2005 NON FASTING TSH LEVEL IS BACK DOWN- INDICATING A NEED FOR MORE METHIMAZOLE T4-FREE DIRECT DIALYSIS 1.2 ..8 - 2.7 NG/DL TSH ..27L ..40 - 5.50 MIU/L 2/DAY-10MG -METHIMAZOLE T3, FREE 407 230 - 420 PG/DL PROPRANALOL Nothing has been explained other than what the comments are here. What do you make of all this??? Re: Thyroid Storm, not common and very nasty Thyroid Storm is when the thyroid hormones are being produced and released into the body at an extremely high level for an extended period of time... months.... there is no control on the gland to slow it down. Not stopped, an uncontrolled storm kills. Metabolic rate is accelerated to the point where a person can't survive surgery, the heart and lungs are working too fast for the machines to keep up, medications can be given because the body just works too fast to be able to come up with a dosage. Calories are burned so rapidly that as the storm wears on the person, if they can't eat enough, will continue to drop weight even after all their body fat is gone, the body begins to cannibalize itself in an attempt to stay alive. Storms can be triggered by a number of things. Sometimes they will spontaneously stop. That's why it's VERY important to determine the cause of the storm and not just resort to RAI. A person in storm can't be treated any other way.... They will either stop, die or need RAI. In my case they determined I was in storm due to a genetic defect and there just wasn't an option... they nuked me. IF the first doc I saw would have done something it's POSSIBLE that they might have been able to control it with medication enough to slow me to a level for surgery, then removed part of the gland.. but even so, since the defect was in my TSH receptors the gland still wouldn't have had a control mechanism and I may have just accelerated into another storm some day. Grave's disease causes hyper and in some cases extreme hyper, in rarer cases it can develop into a storm... that's why I think it's important to be aware of things and err on the side of caution rather than to be blind sided. I'm gonna say that in the three years that I've been online talking with folks about thyroid, and running this group for over two years now.. that I have met only one other that has actually stormed... maybe two.. but I can't think of a second person right now... It's from going into storm and the weird cravings that I got for goitrogens that allow me to understand just what affect they have... see, before the last few years before the storm I wasnt' into vegies at all... and by the time the storm actually started for me I was eating all kinds of cruciferous vegies (cabbage family stuff) and popping roasted soy nuts like I used to do M & Ms.... and after my RAI and going hypo... I don't want much to do with those same foods that I was going crazy over for soo long... I didn't know what it all meant at the time, heck, I thought that I'd suddenly developed a craving for healthier food.. before that I was a meat and potatoes and chocolate person... vegies weren't really part of my menu. Our bodies are just amazing in what they can tell us, if we listen. If your hubby is going back and forth between hyper and hypo.. I wouldn't be hugely concerned that he's in storm... but that's just a lay opinion on just what you've told us so far... It's my understanding that if he were in storm the meds shouldn't be slowing him down into hypo symptoms he'd just keep surging and not slow. .... I'd still really really like to see his labs.... Topper () On Wed, 15 Jun 2005 19:34:15 -0000 hanenhark@... writes: - tell me wht happens when you go into "Storm" please? - Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 In November.. I see hyper... TSH bottomed out.. Frees both high.. see REALLY high Free T3.. considering that they took total T4 and not Free.. that T3 is hugely high. In January the numbers have come down, both frees under range. The dosage was too high and they dropped it... I wonder why they chose to drop it so drastically The February labs are showing low Free T4 and again, extremely high Free T3. T4 to T3 conversion is very very high..... Was February the last time they tested? The should have tested him a couple more times since then..... How does he feel right now...? I'm wondering why the Free T3 is so proportionately higher than the Free T4... I'm not sure how meth works.. does anyone? Does it bind T4 or????? They've made another adjustment since that last lab... so we don't know what things look like right now... so I'm not sure what to suggest.... Cutting Selenium supplements totally would help decrease T3 conversion.. T3 is the active hormone and that is what has to be brought down.... have you cut iodine from his diet? No iodized salt, no sea salt, no seaweed products, no shell fish.... Iron and calcium bind with Thyroid hormone.. but to be honest I don't know if it's with T3 or T4.... I'll wait to hear when the next labs are scheduled.. he needs them.... Oh... and tell me again how he's feeling. Topper () On Thu, 16 Jun 2005 18:56:51 -0500 "Jane Cunningham" writes: Here are Mark's results - DATE OF LAB WORK RESULTS RANGE UNITS DOCTOR'S COMMENTS/DOSAGES 11/19/2004 FASTING DIAGNOSED WITH GRAVES DISEASE - HYPERTHYROID T4 (THYROXINE) TOTAL 12.6 4.5 - 12.5 MCC/DL METHIMAZOLE- 10 MG TABS/2 TIMES PER DAY TSH 0.01 ..40 - 5.50 MIU/L PROPRANOLOL - 1 TAB/3 TIMES/DAY - 10 MG T3, FREE 920 230 - 420 PG/DI 1/7/2005 NON FASTING HE IS NOW HYPOTHYROID - DECREASE METHIMAZOLE T4, FREE 0.6 ..8 - 1.8 NG/DL METHIMAZOLE - 5MG/1 DAY TSH 2.37 ..40 - 5.50 MIU/L NOTE SAYS TSH FALSELY LOW T3, FREE 215 230-420 PG/DL PROPRANOLOL 2/28/2005 NON FASTING TSH LEVEL IS BACK DOWN- INDICATING A NEED FOR MORE METHIMAZOLE T4-FREE DIRECT DIALYSIS 1.2 ..8 - 2.7 NG/DL TSH ..27L ..40 - 5.50 MIU/L 2/DAY-10MG -METHIMAZOLE T3, FREE 407 230 - 420 PG/DL PROPRANALOL Nothing has been explained other than what the comments are here. What do you make of all this??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 In November.. I see hyper... TSH bottomed out.. Frees both high.. see REALLY high Free T3.. considering that they took total T4 and not Free.. that T3 is hugely high. In January the numbers have come down, both frees under range. The dosage was too high and they dropped it... I wonder why they chose to drop it so drastically The February labs are showing low Free T4 and again, extremely high Free T3. T4 to T3 conversion is very very high..... Was February the last time they tested? The should have tested him a couple more times since then..... How does he feel right now...? I'm wondering why the Free T3 is so proportionately higher than the Free T4... I'm not sure how meth works.. does anyone? Does it bind T4 or????? They've made another adjustment since that last lab... so we don't know what things look like right now... so I'm not sure what to suggest.... Cutting Selenium supplements totally would help decrease T3 conversion.. T3 is the active hormone and that is what has to be brought down.... have you cut iodine from his diet? No iodized salt, no sea salt, no seaweed products, no shell fish.... Iron and calcium bind with Thyroid hormone.. but to be honest I don't know if it's with T3 or T4.... I'll wait to hear when the next labs are scheduled.. he needs them.... Oh... and tell me again how he's feeling. Topper () On Thu, 16 Jun 2005 18:56:51 -0500 "Jane Cunningham" writes: Here are Mark's results - DATE OF LAB WORK RESULTS RANGE UNITS DOCTOR'S COMMENTS/DOSAGES 11/19/2004 FASTING DIAGNOSED WITH GRAVES DISEASE - HYPERTHYROID T4 (THYROXINE) TOTAL 12.6 4.5 - 12.5 MCC/DL METHIMAZOLE- 10 MG TABS/2 TIMES PER DAY TSH 0.01 ..40 - 5.50 MIU/L PROPRANOLOL - 1 TAB/3 TIMES/DAY - 10 MG T3, FREE 920 230 - 420 PG/DI 1/7/2005 NON FASTING HE IS NOW HYPOTHYROID - DECREASE METHIMAZOLE T4, FREE 0.6 ..8 - 1.8 NG/DL METHIMAZOLE - 5MG/1 DAY TSH 2.37 ..40 - 5.50 MIU/L NOTE SAYS TSH FALSELY LOW T3, FREE 215 230-420 PG/DL PROPRANOLOL 2/28/2005 NON FASTING TSH LEVEL IS BACK DOWN- INDICATING A NEED FOR MORE METHIMAZOLE T4-FREE DIRECT DIALYSIS 1.2 ..8 - 2.7 NG/DL TSH ..27L ..40 - 5.50 MIU/L 2/DAY-10MG -METHIMAZOLE T3, FREE 407 230 - 420 PG/DL PROPRANALOL Nothing has been explained other than what the comments are here. What do you make of all this??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 I didn't have Graves for twenty years... my hyper was caused by genetically defective TSH receptors... my thyroid gland never got the instructions to increase or decrease production.. mine just decided to increase every so often until I went into storm... so I was that frog that you put in the pot of water and then turn on the flame... I never knew that the water was getting hotter and hotter until it started to boil... but the boiling.. the storm.. THAT I noticed. I need to learn more about the meth but I really do NOT see why they want to increase it to the point were he went so bad before... Do they think it's okay for him to yo yo back and forth like that???? I think NOT!!! it's hard on the body and the mind to go through all of that. How is your hubby with being on the puter.... think he would like to contact me off list so that we can just gab about how he's feeling... I might be able to put things into perspective and make it a little easier to handle as this gets figured out.... I think that it may be time to do some SERIOUS foot stomping... the medication exists to do a better job of control than this yo yo thing that they seem to be setting up.... I have no proof.. but I suspect that they are trying to make you both so miserable and scared that you accept RAI as the only option... I'm not saying that it might not come to that, it depends on how aggressive his antibodies are.... but I do, as a 'survivor' of RAI feel that it should be the LAST resort and not the 'easy way out'. RAI is considered to be the easier route, destroying the gland and then just giving some Synthroid and calling you well..... I have a bitter attitude about this method..... but alot of that has to do with my experience. You do need to weight options... I'm not trying to confuse you with all of this.. just hoping to make you aware so that you don't just grasp out at the offered straw... does that make sense? I know how scared he is... I've been there... in my case knowing that something was TERRIBLY wrong and the doc saying that I was just fine and to go home... I dealt with the storm on my own for another ten months before the symptoms reached the point where I stopped sleeping to stay up at night to eat and then affected my body to the point where I couldnt' do my job properly.. that's what sent me back in to see a doc... and she was the one that diagnosed me.... but by then I had no options... RAI or die.... and I don't want to see anyone in that same position... Your hubby is miserable and his body is all out of whack.. hormones raging and throwing him into a physical and mental frenzy.. then not enough hormones to function properly at all.. it's enough to plunge anyone down into a pit that they can't crawl out off.... .... .and I'm wandering... I should stop now... we'll talk more... you or Mark can contact me directly, too, if you'd like.... I promise not to be so rambly.. well... I'll TRY not to be so rambly!!! hehehehehhe Topper () topper2@... On Fri, 17 Jun 2005 06:40:25 -0500 "Jane Cunningham" writes: - he is feeling like crap! No energy.........on his day off this week sleeping in, when I went to say goodbye, when a man whimpers and says "hold me, I don't know what to do", you can bet he feels awful. He has no energy. He is usually a very active person and I think depression is getting him too. They have him taking Ambien too to help with sleep. We're going to try 5 MG Methimazole in the morning and 10 at night to see if that might be a happier medium. Feb was the last test. They said go back on higher Meth. - to the original dosage. But, I don't get why they wanted him to go back to the original dosage when that caused him to drop too low. I don't trust this impersonal doctor. We are looking into the cost of getting another lab test ourselves. Your support group is helping us. I can't imagine how it was for you to have Graves for 20 years. Did you seesaw back and forth like that? Thanks again More later Jane Cunningham-wife of very sick Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 ooooo my attitude is gonna show here.... The doc sounds as though he doesnt' care a heck of a lot.. or doesn't understand... I'm happy to share what I've learned about dealing with hyper... and hypo.. and going from the extremes... we have others here that can share their stories to..... I'm not minimizing what ... he's reading these???? Mark... I'm not trying to minimize what you are feeling little bit... it's scary as HELL (sorry for the language but it's a fact.. it's as scary as HELL) you have your whole center of being knocked off whack... when your heart starts beating faster and faster and stays there your adrenaline kicks up... it's like being scared of something ALL THE TIME.... Imagine that second when you lose control of your car and skid off the road... that second when you don't know if the car will flip and you're gonna get hurt really bad... or you'll just slide to a stop and be fine.. that's what this is like... you're scared like that ...... it's gonna happen.. it's gonna happen.... it's gonnna hurt.... and all you're doing is laying there, safe and sound and home.... but feel for all the world as though 'it's gonna happen' Folks around you don't get it.... You can't just 'get over it' You can't just change the channel on the TV and not watch the scary movie... you can't just go have a glass of water, or put on a sweater, or turn on a fan... it's INSIDE of you and it won't go away... .... and... Mark... you had to swing the other way too.... and go through all of that.. where all of sudden it's all slow and you can't do stuff... and the scare is still there, but you don't feel like you can even try to run away this time..... How close did I get? There has to be a way to determine the correct dose so that you don't have to swing back and forth between the extremes... We just have to figure it out... and what you can do to reduce the production of the hormone on your side... like watching the vitamins and adding the raw vegies.. You do need the Calcium and the iron though.. take them separate from the vitamins... you don't go over dosing them.. just normal amounts. .the iron to keep his blood strong and to help with binding hormone... the Calcium to keep his bones strong.... and to help with the hormone. A huge part of this is going to be trying to understand that a lot of the fear that you're feeling, Mark, is from the hormones being out of whack.... the thyroid hormones being too high are making other hormones over produce too... understanding that won't change any of it right now.. but if you get your mind to realize that it's an imbalance, that you are not going to go insane, the you have a wife that is right there next to you AND reaching out to others to help... That you aren't alone in what you are dealing with.. you have the whole lot of us here... You aren't alone in this like so many of us were... you're so lucky that way! Topper () On Fri, 17 Jun 2005 14:36:29 -0000 hanenhark@... writes: Thank You - Rambly is good. (Sorry - misunderstood about the20 years.) You've been through it, and I want him to see how awfulthe RAI can be too. I'm printing out your e-mails for him to read.He's got to keep trying. We do have a good medical insurance andprescription drug plan, so that part is in our favor. He found somevitamins without Selenium and Calcium and Iron. We try to eat alot ofveggies. That doc he has says to try meds for a year and then consider removalor RAI. I don't think a year is enough - what do you think??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 ooooo my attitude is gonna show here.... The doc sounds as though he doesnt' care a heck of a lot.. or doesn't understand... I'm happy to share what I've learned about dealing with hyper... and hypo.. and going from the extremes... we have others here that can share their stories to..... I'm not minimizing what ... he's reading these???? Mark... I'm not trying to minimize what you are feeling little bit... it's scary as HELL (sorry for the language but it's a fact.. it's as scary as HELL) you have your whole center of being knocked off whack... when your heart starts beating faster and faster and stays there your adrenaline kicks up... it's like being scared of something ALL THE TIME.... Imagine that second when you lose control of your car and skid off the road... that second when you don't know if the car will flip and you're gonna get hurt really bad... or you'll just slide to a stop and be fine.. that's what this is like... you're scared like that ...... it's gonna happen.. it's gonna happen.... it's gonnna hurt.... and all you're doing is laying there, safe and sound and home.... but feel for all the world as though 'it's gonna happen' Folks around you don't get it.... You can't just 'get over it' You can't just change the channel on the TV and not watch the scary movie... you can't just go have a glass of water, or put on a sweater, or turn on a fan... it's INSIDE of you and it won't go away... .... and... Mark... you had to swing the other way too.... and go through all of that.. where all of sudden it's all slow and you can't do stuff... and the scare is still there, but you don't feel like you can even try to run away this time..... How close did I get? There has to be a way to determine the correct dose so that you don't have to swing back and forth between the extremes... We just have to figure it out... and what you can do to reduce the production of the hormone on your side... like watching the vitamins and adding the raw vegies.. You do need the Calcium and the iron though.. take them separate from the vitamins... you don't go over dosing them.. just normal amounts. .the iron to keep his blood strong and to help with binding hormone... the Calcium to keep his bones strong.... and to help with the hormone. A huge part of this is going to be trying to understand that a lot of the fear that you're feeling, Mark, is from the hormones being out of whack.... the thyroid hormones being too high are making other hormones over produce too... understanding that won't change any of it right now.. but if you get your mind to realize that it's an imbalance, that you are not going to go insane, the you have a wife that is right there next to you AND reaching out to others to help... That you aren't alone in what you are dealing with.. you have the whole lot of us here... You aren't alone in this like so many of us were... you're so lucky that way! Topper () On Fri, 17 Jun 2005 14:36:29 -0000 hanenhark@... writes: Thank You - Rambly is good. (Sorry - misunderstood about the20 years.) You've been through it, and I want him to see how awfulthe RAI can be too. I'm printing out your e-mails for him to read.He's got to keep trying. We do have a good medical insurance andprescription drug plan, so that part is in our favor. He found somevitamins without Selenium and Calcium and Iron. We try to eat alot ofveggies. That doc he has says to try meds for a year and then consider removalor RAI. I don't think a year is enough - what do you think??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 The doc may be totally sincere.. he just may not understand what it's like to be going through this... but keeping on your toes is still a GOOD plan.... don't just 'wait and see' that, in the long run may do no good at all... Be proactive now, determine your options and weight them, explore what seems applicable and give it a fair try... don't just jump on the first that comes along without knowing that there are others... and don't take the easiest once cuz it is easy.... Consider that this will be life long and doing it the right way now will have direct bearing an the rest of your lives.... I assume that you love him a lot.. or you wouldn't be here looking for answers.. so this affects both of you. I want to say something to you, Jane. It's not a common thing amongst us for a family member to stand by us.... Maybe it's cuz most of us are women and our partners are men and not as nurturing... I don't know.. but I want to say THANK YOU from me, a person who's family doesn't understand, just how awesome it is, what you're doing.... I hope you realize that.... Being there for him and reaching out for answers.. not just... well not doing what so many of our family members do to us. Topper () On Fri, 17 Jun 2005 17:35:08 -0000 hanenhark@... writes: - I just got goosebumps reading this.......he will read thisand understand. I talked to him earlier and told him things you hadsaid.....he says he is not yet suspicious of the doctor, butquestions what can be done. I've called the doc to see if they canget him in for another lab on Monday or Tuesday - (his days off.)Keepit up - I think we can do this sweet man some good!!! Thanks so much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 The doc may be totally sincere.. he just may not understand what it's like to be going through this... but keeping on your toes is still a GOOD plan.... don't just 'wait and see' that, in the long run may do no good at all... Be proactive now, determine your options and weight them, explore what seems applicable and give it a fair try... don't just jump on the first that comes along without knowing that there are others... and don't take the easiest once cuz it is easy.... Consider that this will be life long and doing it the right way now will have direct bearing an the rest of your lives.... I assume that you love him a lot.. or you wouldn't be here looking for answers.. so this affects both of you. I want to say something to you, Jane. It's not a common thing amongst us for a family member to stand by us.... Maybe it's cuz most of us are women and our partners are men and not as nurturing... I don't know.. but I want to say THANK YOU from me, a person who's family doesn't understand, just how awesome it is, what you're doing.... I hope you realize that.... Being there for him and reaching out for answers.. not just... well not doing what so many of our family members do to us. Topper () On Fri, 17 Jun 2005 17:35:08 -0000 hanenhark@... writes: - I just got goosebumps reading this.......he will read thisand understand. I talked to him earlier and told him things you hadsaid.....he says he is not yet suspicious of the doctor, butquestions what can be done. I've called the doc to see if they canget him in for another lab on Monday or Tuesday - (his days off.)Keepit up - I think we can do this sweet man some good!!! Thanks so much! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 The doc may be totally sincere.. he just may not understand what it's like to be going through this... but keeping on your toes is still a GOOD plan.... don't just 'wait and see' that, in the long run may do no good at all... Be proactive now, determine your options and weight them, explore what seems applicable and give it a fair try... don't just jump on the first that comes along without knowing that there are others... and don't take the easiest once cuz it is easy.... Consider that this will be life long and doing it the right way now will have direct bearing an the rest of your lives.... I assume that you love him a lot.. or you wouldn't be here looking for answers.. so this affects both of you. I want to say something to you, Jane. It's not a common thing amongst us for a family member to stand by us.... Maybe it's cuz most of us are women and our partners are men and not as nurturing... I don't know.. but I want to say THANK YOU from me, a person who's family doesn't understand, just how awesome it is, what you're doing.... I hope you realize that.... Being there for him and reaching out for answers.. not just... well not doing what so many of our family members do to us. Topper () On Fri, 17 Jun 2005 17:35:08 -0000 hanenhark@... writes: - I just got goosebumps reading this.......he will read thisand understand. I talked to him earlier and told him things you hadsaid.....he says he is not yet suspicious of the doctor, butquestions what can be done. I've called the doc to see if they canget him in for another lab on Monday or Tuesday - (his days off.)Keepit up - I think we can do this sweet man some good!!! Thanks so much! Quote Link to comment Share on other sites More sharing options...
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