Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Hi , I can relate! It IS really hard to get all this information straight in your head - especially when you're stressing with the info that you have a re occurrence of pap cancer. Lets see if I can give a simple answer. Probably not since I usually go off on tangents, but, here goes. Remember, there are variations to every theme, many endo's have their own ideas of what is right. I am relating what I have distilled from the web, this message board, and what my endo (Endocrinologist) and I agree on. The " cured " label is usually not used until after 5 clean years. " Clean " is defined as TG (Thyroglobulin) blood levels of zero (0), (or <2.0, depending on the source), while in the hypo state and a clean whole body scan(WBS) 2 years in a row after the ablation dose. I don't believe the cancer grows back. If it is discovered years down the line, I believe it was not totally eradicated (ablated/excised) and has been lurking in our bodies and the cells became a big enough cluster to be seen. I can't answer the synthroid/levoxyl question. Many people have problems with one or the other and thus prefer one brand. I have always been on levoxyl and haven't had any problems. That I know of Numbers numbers everywhere. We spout alot of test numbers don't we! Most people are tested for TSH at least every 6 months and a Tg with Tg antibodies every 6-12 months. The TSH level should be kept low to suppress the growth of any lurking thyroid cancer cells but how low depends on your age, risk factors, what your body can tolerate, your doctors belief, and Stage/level of cancer. The standard believe is the TSH should be less than 0.1 Hmm, it looks wordy but I hope it has helped. I'm sure others will attempt the simple and straightforward answer. Take care, Alyn -- Alyn@... ; LW, FL dx pap ca 4/5/00; TT 5/23/00; RAI 75 mCi 7/21/00; 0.10 mg levoxyl; 7/19/01 1-yr. I123 WBS neg. Learn the rules so you know how to break them properly. Dalai Lama ---------------------------------------------------- NetZero Platinum Sign Up Today - Only $9.95 per month! http://my.netzero.net/s/signup?r=platinum & refcd=PT97 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Hi , I can relate! It IS really hard to get all this information straight in your head - especially when you're stressing with the info that you have a re occurrence of pap cancer. Lets see if I can give a simple answer. Probably not since I usually go off on tangents, but, here goes. Remember, there are variations to every theme, many endo's have their own ideas of what is right. I am relating what I have distilled from the web, this message board, and what my endo (Endocrinologist) and I agree on. The " cured " label is usually not used until after 5 clean years. " Clean " is defined as TG (Thyroglobulin) blood levels of zero (0), (or <2.0, depending on the source), while in the hypo state and a clean whole body scan(WBS) 2 years in a row after the ablation dose. I don't believe the cancer grows back. If it is discovered years down the line, I believe it was not totally eradicated (ablated/excised) and has been lurking in our bodies and the cells became a big enough cluster to be seen. I can't answer the synthroid/levoxyl question. Many people have problems with one or the other and thus prefer one brand. I have always been on levoxyl and haven't had any problems. That I know of Numbers numbers everywhere. We spout alot of test numbers don't we! Most people are tested for TSH at least every 6 months and a Tg with Tg antibodies every 6-12 months. The TSH level should be kept low to suppress the growth of any lurking thyroid cancer cells but how low depends on your age, risk factors, what your body can tolerate, your doctors belief, and Stage/level of cancer. The standard believe is the TSH should be less than 0.1 Hmm, it looks wordy but I hope it has helped. I'm sure others will attempt the simple and straightforward answer. Take care, Alyn -- Alyn@... ; LW, FL dx pap ca 4/5/00; TT 5/23/00; RAI 75 mCi 7/21/00; 0.10 mg levoxyl; 7/19/01 1-yr. I123 WBS neg. Learn the rules so you know how to break them properly. Dalai Lama ---------------------------------------------------- NetZero Platinum Sign Up Today - Only $9.95 per month! http://my.netzero.net/s/signup?r=platinum & refcd=PT97 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Hi ; i'll intersperse my answers > new doctor found a half inch lump in my neck (via ultrasound..it > can't be felt) and a biopsy showed it may be Pappilary carcinoma > again. I had no idea it could grow back. it may have always been there and then grown I also had never heard of > these radiation scans etc. The only thing I knew about was TSH levels. > I am booked for surgery AUg. 22nd and I will be having the radiation > scan this time. I had a chest x-ray that came back normal. My > Thyroglobulin questions are : Is it possible that Levoxyl is giving me > panic attacks? I never had them while on Synthroid. some folks do better on Levoxyl, some on Synthroid - and it may be a matter of fine tuning your dosage.. or it might be something completely unrelated > and Since my chest x-ray is clear can I rest easy that my radioactive > iodine scan will be clear too and that the Cancer has not spread. You may have some uptake in the neck if the cancer went into any lymph nodes.. thats part of the reason to scan, to determine things that might not be seen on xray. What > do all the numbers mean with all the tests you speak of? Typically one gets tested for TG, thyroglobulin, if it exists in your system its an indicator that there are thyroid cells in your system. Once someone has had a thryoidectomy, and ablation of remaining thryoid cells with RAI, if they don't have antibodies, TG (thyroglobulin) is used as a marker to look for thyca. A hypo (off thyroid med) TG level should be < 2 (or 0 depending on the test and the physician) - if it was low and gets higher, its an indication to look further for recurrence of the cancer. TSH when on meds should be supressed to .10 or so - some folks who are low risk go a little higher than that if they feel bad at .10 - TSH for RAI or for Scans should be 30 or higher - so the Radioactive Iodine gets taken into the system. On going follow up after RAI is typically a hypo scan a year for 2 years and if clean, some folks go to a 2 year schedule and then a 5 year or so schedule. Some folks use Thyrogen to elevate their TSH after 2 clean scans (sometimes after 1 clean scan) If the scan is not clean, more RAI then scan in 6 months to see how well it worked. The combination of scanning and TG testing can give a pretty good picture of any changes regarding recurrence. barb dx pap 7/1/99 TT 8/13/99, RAI 63mci 4/26/00 - CLEAN SCAN 12/15/00 - .175 synthroid barburri@... // bburri@... // www.burri.com hailing from Plaistow NH (42 miles Due North of Boston) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 >As a result of trying to get to the bottom of panic attacks and fertility issues I have been having the past two years ....Is it possible that Levoxyl is giving me panic attacks? I never had them while on Synthroid.> , Although I wouldn't completely rule it out, it is not likely that your panic attacks are related to Levoxyl. Panic attacks are really a " symptom " of a deeper issue which usually requires a trained therapist to help " tease apart " to get at its core source. Though not always, but generally speaking, the core issue will involve facing control issues; where the client/patient is/has been the victim of some type of abuse whereby there were mistreated by a person in an authority position. The panic attack acts as an unconscious attempt to " work through " the pain of that abuse. I would recommend that you seek out the counsel of a very empathic therapist. I do believe there is a connection between your monthly cycle hormones and the thyroid gland, so that your infertility could very well be related your thyroid hormones. Make sure that your OB-GYN or endo are treating the " whole " situation. --Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 >As a result of trying to get to the bottom of panic attacks and fertility issues I have been having the past two years ....Is it possible that Levoxyl is giving me panic attacks? I never had them while on Synthroid.> , Although I wouldn't completely rule it out, it is not likely that your panic attacks are related to Levoxyl. Panic attacks are really a " symptom " of a deeper issue which usually requires a trained therapist to help " tease apart " to get at its core source. Though not always, but generally speaking, the core issue will involve facing control issues; where the client/patient is/has been the victim of some type of abuse whereby there were mistreated by a person in an authority position. The panic attack acts as an unconscious attempt to " work through " the pain of that abuse. I would recommend that you seek out the counsel of a very empathic therapist. I do believe there is a connection between your monthly cycle hormones and the thyroid gland, so that your infertility could very well be related your thyroid hormones. Make sure that your OB-GYN or endo are treating the " whole " situation. --Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 >As a result of trying to get to the bottom of panic attacks and fertility issues I have been having the past two years ....Is it possible that Levoxyl is giving me panic attacks? I never had them while on Synthroid.> , Although I wouldn't completely rule it out, it is not likely that your panic attacks are related to Levoxyl. Panic attacks are really a " symptom " of a deeper issue which usually requires a trained therapist to help " tease apart " to get at its core source. Though not always, but generally speaking, the core issue will involve facing control issues; where the client/patient is/has been the victim of some type of abuse whereby there were mistreated by a person in an authority position. The panic attack acts as an unconscious attempt to " work through " the pain of that abuse. I would recommend that you seek out the counsel of a very empathic therapist. I do believe there is a connection between your monthly cycle hormones and the thyroid gland, so that your infertility could very well be related your thyroid hormones. Make sure that your OB-GYN or endo are treating the " whole " situation. --Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2001 Report Share Posted August 11, 2001 Dear , I too suffered from panic attacks... I have always been a little claustrophobic but about 4 years ago I had my 1st attack & they only happened maybe twice a year if that ... a feeling of heat that started in my body that turned into fear & panic of nothing logical ..... after my TT the panic attacks were a couple a week & quite intense ... the more hypo I was the more uncontrolable they got ... after the I131 I took an antibiotic called AVELOX(this is only " MY " experience with this drug!) & that sent me into a 4 hour panic attack .... .... since .... ..... I've had 6 months to recover, got my TSH under control & I was able to get in an elevator again ... I just went hypo again & started feeling the panic sensation start but DID NOT have a full panic attack this time! I was even able to lie there for my Tracer Body scan (with a bit of relaxing medicine) & a bit of fear & counting off every minute it was on my face but I did it!!! NO FULL BLOWN PANIC ATTACK this time. So ... doing the 20/20 hindsight thing ... I think the cancer & being hypo caused my panic attacks ...I do NOT feel that " mine " are caused by any " deeper issues " but this is just my experience & my opinion. I hope this helps you realize that you are not alone with adding panic attacks to the LONG list of things that might happen to " you " while you have thyca & /or are hypo!!!! All my best, (40 in SLC) 11/3/00; lymph node removal, 11/13/00; pap/thyca,TT, 12/19/00; 2mCi, 12/22/00; 100mCi RAI " quarantine " , 6/15/01; TSH.03,taking .150mcg Synthroid/day, Tg0.5 BUT antibodies 26, 6/16/01; started 25mcg CYTOMEL once a day, 7/23/01; stopped CYTOMEL & Started LID, 8/6/01; TSH 113.8, 8/8/01; took 4mCi pill, 8/10/01 ... CLEAN SCAN!!!!! > >As a result of trying to get to the bottom of panic attacks and > fertility issues I have been having the past two years ....Is it > possible that Levoxyl is giving me panic attacks? I never had them > while on Synthroid.> > > , > Although I wouldn't completely rule it out, it is not likely that > your panic attacks are related to Levoxyl. Panic attacks are really > a " symptom " of a deeper issue which usually requires a trained > therapist to help " tease apart " to get at its core source. > > Though not always, but generally speaking, the core issue will > involve facing control issues; where the client/patient is/has been > the victim of some type of abuse whereby there were mistreated by a > person in an authority position. The panic attack acts as an > unconscious attempt to " work through " the pain of that abuse. > > I would recommend that you seek out the counsel of a very empathic > therapist. > > I do believe there is a connection between your monthly cycle > hormones and the thyroid gland, so that your infertility could very > well be related your thyroid hormones. Make sure that your OB-GYN or > endo are treating the " whole " situation. > > --Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2001 Report Share Posted August 11, 2001 Dear , I too suffered from panic attacks... I have always been a little claustrophobic but about 4 years ago I had my 1st attack & they only happened maybe twice a year if that ... a feeling of heat that started in my body that turned into fear & panic of nothing logical ..... after my TT the panic attacks were a couple a week & quite intense ... the more hypo I was the more uncontrolable they got ... after the I131 I took an antibiotic called AVELOX(this is only " MY " experience with this drug!) & that sent me into a 4 hour panic attack .... .... since .... ..... I've had 6 months to recover, got my TSH under control & I was able to get in an elevator again ... I just went hypo again & started feeling the panic sensation start but DID NOT have a full panic attack this time! I was even able to lie there for my Tracer Body scan (with a bit of relaxing medicine) & a bit of fear & counting off every minute it was on my face but I did it!!! NO FULL BLOWN PANIC ATTACK this time. So ... doing the 20/20 hindsight thing ... I think the cancer & being hypo caused my panic attacks ...I do NOT feel that " mine " are caused by any " deeper issues " but this is just my experience & my opinion. I hope this helps you realize that you are not alone with adding panic attacks to the LONG list of things that might happen to " you " while you have thyca & /or are hypo!!!! All my best, (40 in SLC) 11/3/00; lymph node removal, 11/13/00; pap/thyca,TT, 12/19/00; 2mCi, 12/22/00; 100mCi RAI " quarantine " , 6/15/01; TSH.03,taking .150mcg Synthroid/day, Tg0.5 BUT antibodies 26, 6/16/01; started 25mcg CYTOMEL once a day, 7/23/01; stopped CYTOMEL & Started LID, 8/6/01; TSH 113.8, 8/8/01; took 4mCi pill, 8/10/01 ... CLEAN SCAN!!!!! > >As a result of trying to get to the bottom of panic attacks and > fertility issues I have been having the past two years ....Is it > possible that Levoxyl is giving me panic attacks? I never had them > while on Synthroid.> > > , > Although I wouldn't completely rule it out, it is not likely that > your panic attacks are related to Levoxyl. Panic attacks are really > a " symptom " of a deeper issue which usually requires a trained > therapist to help " tease apart " to get at its core source. > > Though not always, but generally speaking, the core issue will > involve facing control issues; where the client/patient is/has been > the victim of some type of abuse whereby there were mistreated by a > person in an authority position. The panic attack acts as an > unconscious attempt to " work through " the pain of that abuse. > > I would recommend that you seek out the counsel of a very empathic > therapist. > > I do believe there is a connection between your monthly cycle > hormones and the thyroid gland, so that your infertility could very > well be related your thyroid hormones. Make sure that your OB-GYN or > endo are treating the " whole " situation. > > --Chris Quote Link to comment Share on other sites More sharing options...
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