Guest guest Posted November 26, 2005 Report Share Posted November 26, 2005 Trying to figure out when would be the best time to get Free T4 testing. I need to go before I see the ENDO idiot on Jan 20th. My family doc has given me the lab sheet to get Free 4 tested as needed but wants me to wait until I figure my T4 is high. Quick snap shot for those who aren't following. This time last year. TSH 0.92, ( 0.45-5) Free T4 17 ( 11-19) Trab 5 <5 neg.>15 pos. Diffuse Goiter approximately 1 1/2 times normal size. Do not have exact number for Free T3 but it at the high end of normal. Last labs ( maybe 6 weeks ago? ) TSH 0.92 (0.35-5) Free T4 18 ( 11-19) TPO 34 ( 0-35) Diffuse goiter, large..mild compression shows signs of autoimmune. My doc did do a trial run on PTU which is the best I felt all year but after taking it with benadryl for about 4 weeks it was decided I was allergic to it. Doc will not try any other ATDs ( afraid of allergies) Problem is I tend to be cyclic..I do not follow the rules for hyper or hypo.. My WCB count last year was 11.8( 4-11) break down shows just inflammation. My platlet count was high too 455 ( ?-400) While on PTU.. TSH 1.03 ( 0.45-5) Free T4 17 ( 11-19) WCB 8.7 ( 4-11) Platlets 355 ( ?-400) After PTU.. TSH 0.92 (0.45-5) Free 4 17 (11-19) Problem..goiter swells..I get hyper symptoms..goiter reduces symptoms lessen..goiter swells..hyper symptoms..goiter reduces you get the idea..I do not get the hypo swing yet though so the numbers are not going down.. The endo idiot says my numbers are normal, but the gp wants me back to the endo and this one as he has already discussed my case with one of the Endo's in the office but I can not get into see him so he is suppose to make sure the idiot behaves. My Gp says the main problem is that I always go see him after the fact..so it is hard to gauge how high my T4 is going and figures this is the low end of things. Just before my last bloodwork /ultrasound I ended up going to a clinic as I figured I had a throat infection or something else going on as I was having a hard time swallowing. The clinic doc said no..it was strictly thyroid..so he send me for ultrasound/bloodwork..I did bloodwork that day and had to wait almost a week for the ultrasound..3 days after the ultrasound I got a major hormone dump..I would take the boys to school and spend the rest of the day sitting on the couch just shaking for like 4 days..idiot me waited to go see the doc as I was too scared to go alone.. So the doc has the results of my thyroid in all its glory from the ultrasound..the swelling is down now but slowly starting to increase again.. what the doc wants is the T4 at full force..and I tested almost a week and 1/2 before the dump. Problem..if I can not take ATD's I am going to have to come to the realization of either RAI or surgery although my doc is thinking partial thyroidectomy it will be left up to the ENDO idiot. Although his partner will do the actual surgery or RAI. The lady who did my ultrasound use to be a RAI tech..so needless to say she was an informative sweetheart..although she admits she never saw any RAI patients on follow up..just gave them the pill to swallow. She figures if my goiter gets any larger I may end up with an emergency thyroidectomy..don't want to go there. As symptoms are coming back how long should I wait til I get my T4 tested? Should I wait til the goiter decreases and dumps and try to drag myself to the lab? Should I go before? My doc is also reluctant to add suppressive doses of T4 to the mix as he figures it would just add fuel to the fire..and with my history of allergies and my reaction to PTU he is afraid to try any other ATD's. For hyper my TSH should be lower, my free's higher,Trab higher and my WCB much lower. The platelet and TPO are consistent with hyper as well as most symptoms. For hypo my TSH should be much higher, TPO is normally in the 100's and my platelet and free's should be much lower.. On another side note this time last year my mom had emergency RAI from being hyper..they told her she had Grave's. Now with follow up they say it is not Grave's that she was just hyper. My gp has been my Doc for almost 12 years now.. he has delivered all my boys and as part of pregnancy testing and also everytime I lose wieght has tested my TSH..it has always been 0.92..although he kept thinking I might be hyper.. unfortunately he is the first to admit other than PTU he does not know what to do for hyper and being in Canada he has to follow certain rules as in regards to what testing he is allowed to do and what testing the endo can do..which is why I get to go see endo idiot again.. If anyone has any ideas..suggestions...help?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2005 Report Share Posted November 26, 2005 Looking at your numbers.... the TSH is just really goofy compared to the T4.... you'd think either the TSH would be lower with that T4 or the T4 would be lower with that TSH...... Have they checked out your pituitary and hypothalamus? There is also hormone resistance... or receptor defect.... for example... me... my TSH receptors are bad... so I didn't have any guideline for gland production.... so I didn't have the TSH feedback loop thingy going on..... the TSH levels were so out of whack with the thyroid hormones.... Throwing things in the air..... you feel hyper phases..... but never actually go hypo.... by symptoms... have they explored adrenals? What do your pulse and temp do during one of your hyper attacks? The hyper state that you experience occurs about the time that the goiter decreases in size??? You described it as the gland dumping hormone... T4 is what is mostly produced by the thyroid.... 80 percent of the T4 is turned into T3.... if your T4 and T3 were both at the high end of normal... .the T3 conversion isn't very efficient... T3, with good conversion is quite a bit higher within it's range that T4 is in its..... What causes the surge of symptoms when the gland decreases in size? Thinking out loud here.... The gland enlarges, goiter, when it's struggling to produce hormone...It increases it's size to increase iodine filtration to allow for the best possible hormone production.... T4 to T3 conversion involves a lag time.... it takes the magical 6 week to reach full saturation after a level change before the body realizes the full effect of the T3 conversion that is available from the increased T4. What if....... the decrease of the goiter is in response to the level of T3 in your body increasing from the extra T4 that the gland was able to put out while in enlarged, goiter, state? Are you charting basals? I'm wondering if there is an observable cycle..... My hyper state was caused by bed TSH receptors..... after my RAI my doc had me come in for labs every two weeks.... I don't know what she was testing for... I was clueless back then.... but why was I being brought in that often for labs? What could be checked for every two weeks in a person that had RAI to kill the gland... a person that was in storm? My mind is thinking a T3 thing..... Then I think of you..... your are cycling..... but what is triggering the cycle? I assume that they are checking for antibodies..... ....please say that you are charting and can share numbers...... Thinking other things..... They are mostly testing TSH and T4..... what if the conversion is consistently less than it should be....? But the TSH is still relatively high for the thyroid hormones to be at upper end of range.... Do you keep a journal... food, activities.... is there any correlation there between cyclic changes in diet or activities that relate to the symptom cycles? Were you ever injured in your neck area? Accident... something..... We need to work some more on your puzzle...... Tell more.. big things... little things.... let the many eyes look and the many brains ponder... Topper () On Sat, 26 Nov 2005 19:48:21 -0000 "kats3boys" writes: Trying to figure out when would be the best time to get Free T4 testing. I need to go before I see the ENDO idiot on Jan 20th.My family doc has given me the lab sheet to get Free 4 tested as needed but wants me to wait until I figure my T4 is high.Quick snap shot for those who aren't following.This time last year.TSH 0.92, ( 0.45-5) Free T4 17 ( 11-19) Trab 5 <5 neg.>15 pos.Diffuse Goiter approximately 1 1/2 times normal size.Do not have exact number for Free T3 but it at the high end of normal.Last labs ( maybe 6 weeks ago? ) TSH 0.92 (0.35-5) Free T4 18 ( 11-19)TPO 34 ( 0-35) Diffuse goiter, large..mild compression shows signs of autoimmune.My doc did do a trial run on PTU which is the best I felt all year but after taking it with benadryl for about 4 weeks it was decided I was allergic to it. Doc will not try any other ATDs ( afraid of allergies) Problem is I tend to be cyclic..I do not follow the rules for hyper or hypo..My WCB count last year was 11.8( 4-11) break down shows just inflammation.My platlet count was high too 455 ( ?-400)While on PTU..TSH 1.03 ( 0.45-5) Free T4 17 ( 11-19)WCB 8.7 ( 4-11) Platlets 355 ( ?-400)After PTU..TSH 0.92 (0.45-5)Free 4 17 (11-19)Problem..goiter swells..I get hyper symptoms..goiter reduces symptoms lessen..goiter swells..hyper symptoms..goiter reduces you get the idea..I do not get the hypo swing yet though so the numbers are not going down..The endo idiot says my numbers are normal, but the gp wants me back to the endo and this one as he has already discussed my case with one of the Endo's in the office but I can not get into see him so he is suppose to make sure the idiot behaves.My Gp says the main problem is that I always go see him after the fact..so it is hard to gauge how high my T4 is going and figures this is the low end of things.Just before my last bloodwork /ultrasound I ended up going to a clinic as I figured I had a throat infection or something else going on as I was having a hard time swallowing. The clinic doc said no..it was strictly thyroid..so he send me for ultrasound/bloodwork..I did bloodwork that day and had to wait almost a week for the ultrasound..3 days after the ultrasound I got a major hormone dump..I would take the boys to school and spend the rest of the day sitting on the couch just shaking for like 4 days..idiot me waited to go see the doc as I was too scared to go alone..So the doc has the results of my thyroid in all its glory from the ultrasound..the swelling is down now but slowly starting to increase again..what the doc wants is the T4 at full force..and I tested almost a week and 1/2 before the dump.Problem..if I can not take ATD's I am going to have to come to the realization of either RAI or surgery although my doc is thinking partial thyroidectomy it will be left up to the ENDO idiot. Although his partner will do the actual surgery or RAI.The lady who did my ultrasound use to be a RAI tech..so needless to say she was an informative sweetheart..although she admits she never saw any RAI patients on follow up..just gave them the pill to swallow. She figures if my goiter gets any larger I may end up with an emergency thyroidectomy..don't want to go there.As symptoms are coming back how long should I wait til I get my T4 tested?Should I wait til the goiter decreases and dumps and try to drag myself to the lab? Should I go before?My doc is also reluctant to add suppressive doses of T4 to the mix as he figures it would just add fuel to the fire..and with my history of allergies and my reaction to PTU he is afraid to try any other ATD's.For hyper my TSH should be lower, my free's higher,Trab higher and my WCB much lower. The platelet and TPO are consistent with hyper as well as most symptoms.For hypo my TSH should be much higher, TPO is normally in the 100's and my platelet and free's should be much lower..On another side note this time last year my mom had emergency RAI from being hyper..they told her she had Grave's. Now with follow up they say it is not Grave's that she was just hyper.My gp has been my Doc for almost 12 years now.. he has delivered all my boys and as part of pregnancy testing and also everytime I lose wieght has tested my TSH..it has always been 0.92..although he kept thinking I might be hyper.. unfortunately he is the first to admit other than PTU he does not know what to do for hyper and being in Canada he has to follow certain rules as in regards to what testing he is allowed to do and what testing the endo can do..which is why I get to go see endo idiot again..If anyone has any ideas..suggestions...help?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2005 Report Share Posted November 27, 2005 My mind is thinking a T3 thing..... Then I think of you..... your are cycling..... but what is triggering the cycle? I assume that they are checking for antibodies..... ....please say that you are charting and can share numbers...... Thinking other things..... They are mostly testing TSH and T4..... what if the conversion is consistently less than it should be....? But the TSH is still relatively high for the thyroid hormones to be at upper end of range.... Do you keep a journal... food, activities.... is there any correlation there between cyclic changes in diet or activities that relate to the symptom cycles? Were you ever injured in your neck area? Accident... something..... We need to work some more on your puzzle...... Tell more.. big things... little things.... let the many eyes look and the many brains ponder... Topper () Free T3 is harder to get checked than the T4..altough you will be happy to know at least here if the doc rights down total or index the lab just automatically substitutes a Free unless specific reason is given for the other out dated tests.. I am bad..but I do not have my exact Free 3 numbers..although they were told to me and I wrote them down but most likely tossed them.. they have not changed. My basals are running anywhere from 98.7-99.1. My resting pulse is 85-95 but does not go much over 110 when active. No neck injury. I am allergic to Sulphites and MSG ( lot of chemical allergies) so food wise is simple..I avoid diet/preservatives/low fat or sugar free like it is the plague..always have. Very high calorie intake..( sorry girls but some days all I do is eat all day) Iodine/salt is a big trigger for me and I will get a resting pulse of 120 after taking salt. Only main changes in the last few years has been wieght.. and I was having stomach problems which I solved by getting a reverse osmosis system to remove chlorine and other things from the water. Cutting my coffe back to one cup a day has really helped wit hthe pulse as it was going higher. The wieght issue well I have always naturally been thin..I am 5'5 " and averaged between 105-115..with my first pregnancy I topped the scale at 167lbs..and went down to 120lb within 3 months. With my second pregnancy being twins I topped the scale at 167 lbs again but dropped down to 110 within 3 months..Between increasing my calories ( 7000 a day) and getting the Flu shot to avoid getting sick and dropping it right away I have managed to hold it around 130-135lbs for the last 2 years..none of what is going on has changed my wieght although I am eating more now.. I do not bruise or if I do it lasts maybe a day. Cuts and scrapes heal fast..a paper cut will be completely healed and gone within a few hours with out being able to tell where I was cut. One thing that seems to be in the puzzle is my menstrual cycle..I always feel fine just before my cycle and a lot worse after..although I have gone from a 26-28 day cycle for 4-5 days ( normal) to a 28-35 day cycle lasting 1-2 days.. some times with some spotting for an extra day or two.. the shorter my cycle the worse I feel. Doc has checked for growths, pap, cysts etc.. all negative..and says I am too young for perimenopause..I am 36. After I had my ultrasound it was a Friday..that Sunday I woke up with my cycle..by Sunday night it was finnished..monday morning is when I woke up really really hyper.. Right now I just finnished my cycle, 3 days if you include spotting and I feel like I am on speed. Work this week end has been rough..all shakey in the hands so it is hard to do some of the finer things. Plus it feels like the heat is turned on full blast..I enjoy going outside for my break to cool off and it is only 5 C out right now..my neck starting swelling before my cycle again but this time has not gone down and is getting worse the last couple of days..pain..plus all day today it felt like I had something stuck in it..like a piece of food or something sharp..I am thinking it may do this til my next cycle and then I will have a major dump or maybe the menstrual cycle is not included? ( I have only been thinking this might be connected with estrogen or lack of the last few months so have not been paying attention to it other than the lack of so not a definite yet) Right now my resting pulse is 92..sitting at the computer but I am thinking I am just getting worn down from all of this..not sleeping yet functioning all day. It is sort of funny cause I can walk a few miles and not even feel it yet throw a set of stairs in and they are hard to get up..the shoulder muscles are the same way..I can clean and lift things all day and not notice but get me to lift something above my head and the muscles are dead. Right now it is just after midnight. I worked til 10 so I have been home since 10:30..I work tommorrow at 10 am and I am wide awake feeling like I could run a marathon, like I should be doing something besides sitting here. I have learnt though that even just laying down my body will rest even if my mind does not. Kats3boys Kats3boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2005 Report Share Posted November 27, 2005 My mind is thinking a T3 thing..... Then I think of you..... your are cycling..... but what is triggering the cycle? I assume that they are checking for antibodies..... ....please say that you are charting and can share numbers...... Thinking other things..... They are mostly testing TSH and T4..... what if the conversion is consistently less than it should be....? But the TSH is still relatively high for the thyroid hormones to be at upper end of range.... Do you keep a journal... food, activities.... is there any correlation there between cyclic changes in diet or activities that relate to the symptom cycles? Were you ever injured in your neck area? Accident... something..... We need to work some more on your puzzle...... Tell more.. big things... little things.... let the many eyes look and the many brains ponder... Topper () Free T3 is harder to get checked than the T4..altough you will be happy to know at least here if the doc rights down total or index the lab just automatically substitutes a Free unless specific reason is given for the other out dated tests.. I am bad..but I do not have my exact Free 3 numbers..although they were told to me and I wrote them down but most likely tossed them.. they have not changed. My basals are running anywhere from 98.7-99.1. My resting pulse is 85-95 but does not go much over 110 when active. No neck injury. I am allergic to Sulphites and MSG ( lot of chemical allergies) so food wise is simple..I avoid diet/preservatives/low fat or sugar free like it is the plague..always have. Very high calorie intake..( sorry girls but some days all I do is eat all day) Iodine/salt is a big trigger for me and I will get a resting pulse of 120 after taking salt. Only main changes in the last few years has been wieght.. and I was having stomach problems which I solved by getting a reverse osmosis system to remove chlorine and other things from the water. Cutting my coffe back to one cup a day has really helped wit hthe pulse as it was going higher. The wieght issue well I have always naturally been thin..I am 5'5 " and averaged between 105-115..with my first pregnancy I topped the scale at 167lbs..and went down to 120lb within 3 months. With my second pregnancy being twins I topped the scale at 167 lbs again but dropped down to 110 within 3 months..Between increasing my calories ( 7000 a day) and getting the Flu shot to avoid getting sick and dropping it right away I have managed to hold it around 130-135lbs for the last 2 years..none of what is going on has changed my wieght although I am eating more now.. I do not bruise or if I do it lasts maybe a day. Cuts and scrapes heal fast..a paper cut will be completely healed and gone within a few hours with out being able to tell where I was cut. One thing that seems to be in the puzzle is my menstrual cycle..I always feel fine just before my cycle and a lot worse after..although I have gone from a 26-28 day cycle for 4-5 days ( normal) to a 28-35 day cycle lasting 1-2 days.. some times with some spotting for an extra day or two.. the shorter my cycle the worse I feel. Doc has checked for growths, pap, cysts etc.. all negative..and says I am too young for perimenopause..I am 36. After I had my ultrasound it was a Friday..that Sunday I woke up with my cycle..by Sunday night it was finnished..monday morning is when I woke up really really hyper.. Right now I just finnished my cycle, 3 days if you include spotting and I feel like I am on speed. Work this week end has been rough..all shakey in the hands so it is hard to do some of the finer things. Plus it feels like the heat is turned on full blast..I enjoy going outside for my break to cool off and it is only 5 C out right now..my neck starting swelling before my cycle again but this time has not gone down and is getting worse the last couple of days..pain..plus all day today it felt like I had something stuck in it..like a piece of food or something sharp..I am thinking it may do this til my next cycle and then I will have a major dump or maybe the menstrual cycle is not included? ( I have only been thinking this might be connected with estrogen or lack of the last few months so have not been paying attention to it other than the lack of so not a definite yet) Right now my resting pulse is 92..sitting at the computer but I am thinking I am just getting worn down from all of this..not sleeping yet functioning all day. It is sort of funny cause I can walk a few miles and not even feel it yet throw a set of stairs in and they are hard to get up..the shoulder muscles are the same way..I can clean and lift things all day and not notice but get me to lift something above my head and the muscles are dead. Right now it is just after midnight. I worked til 10 so I have been home since 10:30..I work tommorrow at 10 am and I am wide awake feeling like I could run a marathon, like I should be doing something besides sitting here. I have learnt though that even just laying down my body will rest even if my mind does not. Kats3boys Kats3boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2005 Report Share Posted November 27, 2005 My mind is thinking a T3 thing..... Then I think of you..... your are cycling..... but what is triggering the cycle? I assume that they are checking for antibodies..... ....please say that you are charting and can share numbers...... Thinking other things..... They are mostly testing TSH and T4..... what if the conversion is consistently less than it should be....? But the TSH is still relatively high for the thyroid hormones to be at upper end of range.... Do you keep a journal... food, activities.... is there any correlation there between cyclic changes in diet or activities that relate to the symptom cycles? Were you ever injured in your neck area? Accident... something..... We need to work some more on your puzzle...... Tell more.. big things... little things.... let the many eyes look and the many brains ponder... Topper () Free T3 is harder to get checked than the T4..altough you will be happy to know at least here if the doc rights down total or index the lab just automatically substitutes a Free unless specific reason is given for the other out dated tests.. I am bad..but I do not have my exact Free 3 numbers..although they were told to me and I wrote them down but most likely tossed them.. they have not changed. My basals are running anywhere from 98.7-99.1. My resting pulse is 85-95 but does not go much over 110 when active. No neck injury. I am allergic to Sulphites and MSG ( lot of chemical allergies) so food wise is simple..I avoid diet/preservatives/low fat or sugar free like it is the plague..always have. Very high calorie intake..( sorry girls but some days all I do is eat all day) Iodine/salt is a big trigger for me and I will get a resting pulse of 120 after taking salt. Only main changes in the last few years has been wieght.. and I was having stomach problems which I solved by getting a reverse osmosis system to remove chlorine and other things from the water. Cutting my coffe back to one cup a day has really helped wit hthe pulse as it was going higher. The wieght issue well I have always naturally been thin..I am 5'5 " and averaged between 105-115..with my first pregnancy I topped the scale at 167lbs..and went down to 120lb within 3 months. With my second pregnancy being twins I topped the scale at 167 lbs again but dropped down to 110 within 3 months..Between increasing my calories ( 7000 a day) and getting the Flu shot to avoid getting sick and dropping it right away I have managed to hold it around 130-135lbs for the last 2 years..none of what is going on has changed my wieght although I am eating more now.. I do not bruise or if I do it lasts maybe a day. Cuts and scrapes heal fast..a paper cut will be completely healed and gone within a few hours with out being able to tell where I was cut. One thing that seems to be in the puzzle is my menstrual cycle..I always feel fine just before my cycle and a lot worse after..although I have gone from a 26-28 day cycle for 4-5 days ( normal) to a 28-35 day cycle lasting 1-2 days.. some times with some spotting for an extra day or two.. the shorter my cycle the worse I feel. Doc has checked for growths, pap, cysts etc.. all negative..and says I am too young for perimenopause..I am 36. After I had my ultrasound it was a Friday..that Sunday I woke up with my cycle..by Sunday night it was finnished..monday morning is when I woke up really really hyper.. Right now I just finnished my cycle, 3 days if you include spotting and I feel like I am on speed. Work this week end has been rough..all shakey in the hands so it is hard to do some of the finer things. Plus it feels like the heat is turned on full blast..I enjoy going outside for my break to cool off and it is only 5 C out right now..my neck starting swelling before my cycle again but this time has not gone down and is getting worse the last couple of days..pain..plus all day today it felt like I had something stuck in it..like a piece of food or something sharp..I am thinking it may do this til my next cycle and then I will have a major dump or maybe the menstrual cycle is not included? ( I have only been thinking this might be connected with estrogen or lack of the last few months so have not been paying attention to it other than the lack of so not a definite yet) Right now my resting pulse is 92..sitting at the computer but I am thinking I am just getting worn down from all of this..not sleeping yet functioning all day. It is sort of funny cause I can walk a few miles and not even feel it yet throw a set of stairs in and they are hard to get up..the shoulder muscles are the same way..I can clean and lift things all day and not notice but get me to lift something above my head and the muscles are dead. Right now it is just after midnight. I worked til 10 so I have been home since 10:30..I work tommorrow at 10 am and I am wide awake feeling like I could run a marathon, like I should be doing something besides sitting here. I have learnt though that even just laying down my body will rest even if my mind does not. Kats3boys Kats3boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 It still isn't clear to me about the TPO. Is this a test for actual Thyroidperoxidase, or is it the count for the antibody TO TPO? This is something I asked a few weeks ago. You said you were negative for the TPO antibody, but when was that test done, yrs ago, or a yr ago? Also, the TrAntibody----That was a yr ago? Any reason why this doctor has not run another antibody test, to see if either one of these has now come up to an abnormal range? You're going to be at this forever, if you don't take an aggressive action with this doctor on this, or you're going to lose a thyroid that may be possible to shrink, as in possible Hashi's. I frankly want my Hashi's gland removed, but then I think that mine may have permanent nodules on it, or maybe permanently enlarge, as many Hashi's glands become, just a guess now, not written in blood, and I've been on thyroid meds at suppressive doses for a long time now. Yours is STILL looking like thyroiditis to me. Why not get your OWN antibodies testing done, just to make sure, if he won't comply? Free T4 > Trying to figure out when would be the best time to get Free T4 > testing. I need to go before I see the ENDO idiot on Jan 20th. > > My family doc has given me the lab sheet to get Free 4 tested as > needed but wants me to wait until I figure my T4 is high. > > Quick snap shot for those who aren't following. > This time last year. > TSH 0.92, ( 0.45-5) > Free T4 17 ( 11-19) > Trab 5 <5 neg.>15 pos. > Diffuse Goiter approximately 1 1/2 times normal size. > Do not have exact number for Free T3 but it at the high end of > normal. > > Last labs ( maybe 6 weeks ago? ) > TSH 0.92 (0.35-5) > Free T4 18 ( 11-19) > TPO 34 ( 0-35) > Diffuse goiter, large..mild compression shows signs of autoimmune. > > My doc did do a trial run on PTU which is the best I felt all year > but after taking it with benadryl for about 4 weeks it was decided I > was allergic to it. Doc will not try any other ATDs ( afraid of > allergies) > > Problem is I tend to be cyclic..I do not follow the rules for hyper > or hypo.. > My WCB count last year was 11.8( 4-11) > break down shows just inflammation. > My platlet count was high too 455 ( ?-400) > > While on PTU.. > TSH 1.03 ( 0.45-5) > Free T4 17 ( 11-19) > WCB 8.7 ( 4-11) > Platlets 355 ( ?-400) > After PTU.. > TSH 0.92 (0.45-5) > Free 4 17 (11-19) > > Problem..goiter swells..I get hyper symptoms..goiter reduces > symptoms lessen..goiter swells..hyper symptoms..goiter reduces you > get the idea..I do not get the hypo swing yet though so the numbers > are not going down.. > > The endo idiot says my numbers are normal, but the gp wants me back > to the endo and this one as he has already discussed my case with > one of the Endo's in the office but I can not get into see him so he > is suppose to make sure the idiot behaves. > > My Gp says the main problem is that I always go see him after the > fact..so it is hard to gauge how high my T4 is going and figures > this is the low end of things. > > Just before my last bloodwork /ultrasound I ended up going to a > clinic as I figured I had a throat infection or something else going > on as I was having a hard time swallowing. The clinic doc said > no..it was strictly thyroid..so he send me for > ultrasound/bloodwork..I did bloodwork that day and had to wait > almost a week for the ultrasound..3 days after the ultrasound I got > a major hormone dump..I would take the boys to school and spend the > rest of the day sitting on the couch just shaking for like 4 > days..idiot me waited to go see the doc as I was too scared to go > alone.. > > So the doc has the results of my thyroid in all its glory from the > ultrasound..the swelling is down now but slowly starting to increase > again.. > what the doc wants is the T4 at full force..and I tested almost a > week and 1/2 before the dump. > > Problem..if I can not take ATD's I am going to have to come to the > realization of either RAI or surgery although my doc is thinking > partial thyroidectomy it will be left up to the ENDO idiot. Although > his partner will do the actual surgery or RAI. > > The lady who did my ultrasound use to be a RAI tech..so needless to > say she was an informative sweetheart..although she admits she never > saw any RAI patients on follow up..just gave them the pill to > swallow. She figures if my goiter gets any larger I may end up with > an emergency thyroidectomy..don't want to go there. > > As symptoms are coming back how long should I wait til I get my T4 > tested? > Should I wait til the goiter decreases and dumps and try to drag > myself to the lab? Should I go before? > > My doc is also reluctant to add suppressive doses of T4 to the mix > as he figures it would just add fuel to the fire..and with my > history of allergies and my reaction to PTU he is afraid to try any > other ATD's. > > For hyper my TSH should be lower, my free's higher,Trab higher and > my WCB much lower. The platelet and TPO are consistent with hyper as > well as most symptoms. > > For hypo my TSH should be much higher, TPO is normally in the 100's > and my platelet and free's should be much lower.. > > On another side note this time last year my mom had emergency RAI > from being hyper..they told her she had Grave's. Now with follow up > they say it is not Grave's that she was just hyper. > My gp has been my Doc for almost 12 years now.. he has delivered all > my boys and as part of pregnancy testing and also everytime I lose > wieght has tested my TSH..it has always been 0.92..although he kept > thinking I might be hyper.. unfortunately he is the first to admit > other than PTU he does not know what to do for hyper and being in > Canada he has to follow certain rules as in regards to what testing > he is allowed to do and what testing the endo can do..which is why I > get to go see endo idiot again.. > > If anyone has any ideas..suggestions...help?? 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Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Oops! Disregard last answer about self testing, I forgot you were in Canada. Free T4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 IMHO, every single thing about this cycling says Hashimoto's Thyroiditis. I think it's been way too long since the thyroid antibodies were done, myself. Could be, those antibody tests were done right before they started coming up in #s. In the meantime, she's going to get a damaged, permanently enlarged gland that's going to have to be removed, if it "hardens up" in place, like an untreated Hashi's gland does do. I still think it's Hashi's. Re: Free T4 Looking at your numbers.... the TSH is just really goofy compared to the T4.... you'd think either the TSH would be lower with that T4 or the T4 would be lower with that TSH...... Have they checked out your pituitary and hypothalamus? There is also hormone resistance... or receptor defect.... for example... me... my TSH receptors are bad... so I didn't have any guideline for gland production.... so I didn't have the TSH feedback loop thingy going on..... the TSH levels were so out of whack with the thyroid hormones.... Throwing things in the air..... you feel hyper phases..... but never actually go hypo.... by symptoms... have they explored adrenals? What do your pulse and temp do during one of your hyper attacks? The hyper state that you experience occurs about the time that the goiter decreases in size??? You described it as the gland dumping hormone... T4 is what is mostly produced by the thyroid.... 80 percent of the T4 is turned into T3.... if your T4 and T3 were both at the high end of normal... .the T3 conversion isn't very efficient... T3, with good conversion is quite a bit higher within it's range that T4 is in its..... What causes the surge of symptoms when the gland decreases in size? Thinking out loud here.... The gland enlarges, goiter, when it's struggling to produce hormone...It increases it's size to increase iodine filtration to allow for the best possible hormone production.... T4 to T3 conversion involves a lag time.... it takes the magical 6 week to reach full saturation after a level change before the body realizes the full effect of the T3 conversion that is available from the increased T4. What if....... the decrease of the goiter is in response to the level of T3 in your body increasing from the extra T4 that the gland was able to put out while in enlarged, goiter, state? Are you charting basals? I'm wondering if there is an observable cycle..... My hyper state was caused by bed TSH receptors..... after my RAI my doc had me come in for labs every two weeks.... I don't know what she was testing for... I was clueless back then.... but why was I being brought in that often for labs? What could be checked for every two weeks in a person that had RAI to kill the gland... a person that was in storm? My mind is thinking a T3 thing..... Then I think of you..... your are cycling..... but what is triggering the cycle? I assume that they are checking for antibodies..... ....please say that you are charting and can share numbers...... Thinking other things..... They are mostly testing TSH and T4..... what if the conversion is consistently less than it should be....? But the TSH is still relatively high for the thyroid hormones to be at upper end of range.... Do you keep a journal... food, activities.... is there any correlation there between cyclic changes in diet or activities that relate to the symptom cycles? Were you ever injured in your neck area? Accident... something..... We need to work some more on your puzzle...... Tell more.. big things... little things.... let the many eyes look and the many brains ponder... Topper () On Sat, 26 Nov 2005 19:48:21 -0000 "kats3boys" writes: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 IMHO, every single thing about this cycling says Hashimoto's Thyroiditis. I think it's been way too long since the thyroid antibodies were done, myself. Could be, those antibody tests were done right before they started coming up in #s. In the meantime, she's going to get a damaged, permanently enlarged gland that's going to have to be removed, if it "hardens up" in place, like an untreated Hashi's gland does do. I still think it's Hashi's. Re: Free T4 Looking at your numbers.... the TSH is just really goofy compared to the T4.... you'd think either the TSH would be lower with that T4 or the T4 would be lower with that TSH...... Have they checked out your pituitary and hypothalamus? There is also hormone resistance... or receptor defect.... for example... me... my TSH receptors are bad... so I didn't have any guideline for gland production.... so I didn't have the TSH feedback loop thingy going on..... the TSH levels were so out of whack with the thyroid hormones.... Throwing things in the air..... you feel hyper phases..... but never actually go hypo.... by symptoms... have they explored adrenals? What do your pulse and temp do during one of your hyper attacks? The hyper state that you experience occurs about the time that the goiter decreases in size??? You described it as the gland dumping hormone... T4 is what is mostly produced by the thyroid.... 80 percent of the T4 is turned into T3.... if your T4 and T3 were both at the high end of normal... .the T3 conversion isn't very efficient... T3, with good conversion is quite a bit higher within it's range that T4 is in its..... What causes the surge of symptoms when the gland decreases in size? Thinking out loud here.... The gland enlarges, goiter, when it's struggling to produce hormone...It increases it's size to increase iodine filtration to allow for the best possible hormone production.... T4 to T3 conversion involves a lag time.... it takes the magical 6 week to reach full saturation after a level change before the body realizes the full effect of the T3 conversion that is available from the increased T4. What if....... the decrease of the goiter is in response to the level of T3 in your body increasing from the extra T4 that the gland was able to put out while in enlarged, goiter, state? Are you charting basals? I'm wondering if there is an observable cycle..... My hyper state was caused by bed TSH receptors..... after my RAI my doc had me come in for labs every two weeks.... I don't know what she was testing for... I was clueless back then.... but why was I being brought in that often for labs? What could be checked for every two weeks in a person that had RAI to kill the gland... a person that was in storm? My mind is thinking a T3 thing..... Then I think of you..... your are cycling..... but what is triggering the cycle? I assume that they are checking for antibodies..... ....please say that you are charting and can share numbers...... Thinking other things..... They are mostly testing TSH and T4..... what if the conversion is consistently less than it should be....? But the TSH is still relatively high for the thyroid hormones to be at upper end of range.... Do you keep a journal... food, activities.... is there any correlation there between cyclic changes in diet or activities that relate to the symptom cycles? Were you ever injured in your neck area? Accident... something..... We need to work some more on your puzzle...... Tell more.. big things... little things.... let the many eyes look and the many brains ponder... Topper () On Sat, 26 Nov 2005 19:48:21 -0000 "kats3boys" writes: Quote Link to comment Share on other sites More sharing options...
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