Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Hi , I was expecting much worse myself, although I am only entering week #6 since my TT, so perhaps the very worst is coming (getting a TSH check tomorrow). What I have noticed that when I add any stress at all to my life (like taking care of my son, working, etc...), my symptoms seem to be more exagerated. Another thing I noticed, and I have posted here about it, is that when I go for a jog, my symptoms are greatly alleviated for about 12 hours, then they return. Coffee in the morning helps, and taking it easy (like lying down) when I feel the first signs of exhaustion or light-headiness coming about keeps the symptoms more at bay. One more thing, I have noticed I have good days and bad, and that the symptoms come in waves. If I do plan an activity, like cooking or doing laundry ( are we having fun yet?), I stop after the task is completed and rest before gettting into anything else. Perhaps I am not truly hypo yet, but my thyroid was removed July 9, and I went off Cytomel Aug. 6. I actually felt worse the week before working and on Cytomel than I did the first few days off of work and off of Cytomel earlier this week. I think part of the battle is managing hypothyroidism as best you can, if possible. Debbi (Washington, DC) Age 41 dx pap thyca 5/01 TT 7/01 2 cm tumor/no spread RAI sch 8/01 In a message dated 8/12/01 3:34:18 PM Eastern Daylight Time, mrfino@... writes: > Subj: Hypo not so bad? > Date: 8/12/01 3:34:18 PM Eastern Daylight Time > From: mrfino@... > Reply-to: <A HREF= " mailto:Thyca " >Thyca </A> > To: Thyca > > > > > Hi: > > I'm curious to hear from anyone whose experience of going > hypo " wasn't too bad " or words to that effect. I suspect that the > experience varies from person to person, but on this list I've read > some of the more difficult experiences. Not having gone through this > before I don't know what to expect. What I've read on this list > leads me to expect a great disruption in my life, at least for some > period of time, due to " brain fog, " etc. Is there anyone here who > can provide good anecdotes that will balance the picture? Or is this > list fairly representative? > > > > 7/00 PT, found 2.3 cm pap left side > 8/01 completion thyroidectomy, .5 cm pap right side > > > For more information regarding thyroid cancer visit www.thyca.org. If you > do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank > email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 , I have had only one hypo experience and will undergo another in about four weeks. My first was really pretty smooth sailing until the last couple of days. I worked, played tennis and did all my normal activities. I did experience brain fog or forgetfulness but it wasnt any big deal. My face did get puffy and I looked kind of crumby but other than that it was not horrendous in any way. Jan tt 3-16-2001, 3 cm tumor with carotid artery, soft tissue and lymph node involvement, tall cell variant of pap cancer RAI 4-30-2001, 200 mCi > I'm curious to hear from anyone whose experience of going > hypo " wasn't too bad " or words to that effect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 , I have had only one hypo experience and will undergo another in about four weeks. My first was really pretty smooth sailing until the last couple of days. I worked, played tennis and did all my normal activities. I did experience brain fog or forgetfulness but it wasnt any big deal. My face did get puffy and I looked kind of crumby but other than that it was not horrendous in any way. Jan tt 3-16-2001, 3 cm tumor with carotid artery, soft tissue and lymph node involvement, tall cell variant of pap cancer RAI 4-30-2001, 200 mCi > I'm curious to hear from anyone whose experience of going > hypo " wasn't too bad " or words to that effect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 , I have had only one hypo experience and will undergo another in about four weeks. My first was really pretty smooth sailing until the last couple of days. I worked, played tennis and did all my normal activities. I did experience brain fog or forgetfulness but it wasnt any big deal. My face did get puffy and I looked kind of crumby but other than that it was not horrendous in any way. Jan tt 3-16-2001, 3 cm tumor with carotid artery, soft tissue and lymph node involvement, tall cell variant of pap cancer RAI 4-30-2001, 200 mCi > I'm curious to hear from anyone whose experience of going > hypo " wasn't too bad " or words to that effect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Hi I've handed hundreds of therapy doses of RAI to perhaps 2-4 hundred different people. A small percentage (maybe 5%) could not detect any effect from being hypo. Some of these told me that they had trouble remembering to take their T4 because it had so little effect on them. One man learned norwegian from scratch while in isolation during repeated therapies. A larger percentage (maybe 10%) were really low - almost zombies. I was acutely conscious of these because I couldn't rely on them to maintain the precautions. The rest were somewhere in the middle. They fitted into 3 camps - mentally low, physically low or both. I could never see any reason why, but I have to say that my interest was purely selfish, so if I was satisfied that they wouldn't contaminate the room too much, I didn't look any further. Ian Most people > Hi: > > I'm curious to hear from anyone whose experience of going > hypo " wasn't too bad " or words to that effect. I suspect that the > experience varies from person to person, but on this list I've read > some of the more difficult experiences. Not having gone through this > before I don't know what to expect. What I've read on this list > leads me to expect a great disruption in my life, at least for some > period of time, due to " brain fog, " etc. Is there anyone here who > can provide good anecdotes that will balance the picture? Or is this > list fairly representative? > > > > 7/00 PT, found 2.3 cm pap left side > 8/01 completion thyroidectomy, .5 cm pap right side > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Hi, I felt much better than I expected to feel b/n surgery and RAI (no cytomomel). In fact, I was surprised that my TSH was sufficiently high enough for treatment. The nasty symptoms hit me after RAI and it did take months for me to feel better (energy, stamina, mental acuity, hair loss). I think recovery time also depends on how many med adjustments after RAI. 6-8 weeks b/n adjustments can draw this out for too long! For me, my TSH was 50 five weeks post RAI (clearly undermedicated) so I think starting on the right dose has a direct impact on how soon you feel better after RAI. I'm absolutely fine now!...just in time to go off for my yearly scan, oh boy. Good luck, Sandy TT/RAI Oct. 2000, multi-focal pap > Hi: > > I'm curious to hear from anyone whose experience of going > hypo " wasn't too bad " or words to that effect. I suspect that the > experience varies from person to person, but on this list I've read > some of the more difficult experiences. Not having gone through this > before I don't know what to expect. What I've read on this list > leads me to expect a great disruption in my life, at least for some > period of time, due to " brain fog, " etc. Is there anyone here who > can provide good anecdotes that will balance the picture? Or is this > list fairly representative? > > > > 7/00 PT, found 2.3 cm pap left side > 8/01 completion thyroidectomy, .5 cm pap right side Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 I'm one who thinks hypo isn't too bad. I was a frequent scanner and had to go thru hypo hell 7 times in the first 5 1/2 years after being diagnosed. That roller coaster was tough as I would just get back to normal and it was time to go off meds and do it all over again, but I tolerated it well. I have been able to maintain most of my normal activities whenever hypo, altho' some were done at a slower and less intesnse rate. There is no doubt you will have a disruption in your normal lifestyle, but it may not be as severe as you anticipate. Everyone differs on how acute hypo symtoms are and there is simply no way to predict how you will experience them. You'll just have to go with the flow as hypo hell happens! Marilyn >>I'm curious to hear from anyone whose experience of going hypo " wasn't too bad " or words to that effect. I suspect that the experience varies from person to person, but on this list I've read some of the more difficult experiences. Not having gone through this before I don't know what to expect. What I've read on this list leads me to expect a great disruption in my life, at least for some period of time, due to " brain fog, " etc. Is there anyone here who can provide good anecdotes that will balance the picture? Or is this list fairly representative?<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Hi Ian, I think you did a great job of summing it up ... HYPO will be different for EVERYBODY!!! I was wondering though .... .... does the TSH level you reach have any relation to how bad you feel??? I really did pretty well while HYPO but as soon as my TSH gets into the 3 digits (113.8) I HIT A HYPO WALL, Hard!! I seem to handle the 2 digits fine .... JUST WONDERING? (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!!!!! > Hi > > I've handed hundreds of therapy doses of RAI to perhaps 2-4 hundred different > people. > > A small percentage (maybe 5%) could not detect any effect from being hypo. > Some of these told me that they had trouble remembering to take their T4 > because it had so little effect on them. One man learned norwegian from > scratch while in isolation during repeated therapies. > > A larger percentage (maybe 10%) were really low - almost zombies. I was > acutely conscious of these because I couldn't rely on them to maintain the > precautions. > > The rest were somewhere in the middle. They fitted into 3 camps - mentally > low, physically low or both. I could never see any reason why, but I have to > say that my interest was purely selfish, so if I was satisfied that they > wouldn't contaminate the room too much, I didn't look any further. > > Ian > > > Most people > > Hi: > > > > I'm curious to hear from anyone whose experience of going > > hypo " wasn't too bad " or words to that effect. I suspect that the > > experience varies from person to person, but on this list I've read > > some of the more difficult experiences. Not having gone through this > > before I don't know what to expect. What I've read on this list > > leads me to expect a great disruption in my life, at least for some > > period of time, due to " brain fog, " etc. Is there anyone here who > > can provide good anecdotes that will balance the picture? Or is this > > list fairly representative? > > > > > > > > 7/00 PT, found 2.3 cm pap left side > > 8/01 completion thyroidectomy, .5 cm pap right side > > > > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe@y... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Hi I'm sorry, I can't answer this. When I was doing this work I concentrated on the parts that I needed to know (radiation protection, home environment, continence etc), and the LID aspects which interested me. My understanding of the hormonal side of things was superficial. I can't honestly say that I noticed TSH values - I can't even swear that we did them. Ian > Hi Ian, > > I think you did a great job of summing it up ... HYPO will be > different for EVERYBODY!!! I was wondering though .... > > ... does the TSH level you reach have any relation to how bad you > feel??? > > I really did pretty well while HYPO but as soon as my TSH gets into > the 3 digits (113.8) I HIT A HYPO WALL, Hard!! I seem to handle the 2 > digits fine .... JUST WONDERING? > > > (40 in SLC) Ian Adam Radiation Safety Officer The Institute of Cancer Research Cotswold Road Sutton Surrey SM2 5NG Tel: 020 8722 4250 Fax: 020 8722 4300 EMail: iana@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 Thanks, , and everyone else who responded to my original post seeking anecdotes of " not so bad " experiences going hypo. The potential disruption in my life from going off of Synthroid (175 mcg) in preparation for RAI has caused me far more anxiety than the surgery I just went through (completion thyroidectomy 8/3). I sailed through the surgery, missing only 1 day of work. Hearing your experiences lessens my anxiety quite a bit, as I know that the disruption may not be as bad as I feared. I'll keep going as long as I can and maybe I'll be back here in a few weeks with another anecdote of a " not so bad " experience going hypo. Thanks again. 7/00 partial thyroidectomy 2.3 cm pap 8/01 completion thyroidectomy, another .5 cm pap now on Cytomel 25 mcg (until this Friday 8/17) RAI (100 mci) to follow > I have always had a fairly 'tolerable' experience going hypo. I have looked > at it as 'mind over matter', if I don't tell myself I'm feeling bad, then I > don't feel bad. It usually works. I keep up my same activities, go to work > everyday, play with my 2 yr. old in the back yard, cook dinner, etc. The > last time I went hypo it really only hit me the last week. I felt drug out > and tired, but continued to work at least. Just keep a positive attitude, > don't try to do too much, but don't suddenly stop your life simply because > you go off your meds. I think by expecting to be miserable, we sometimes > make ourselves that way. > > > TT 7/97, 1 cm pap w/ lymph node mets, 105 mci RAI 9/97, recurrance 2/99, 2.5 > cm nodule w/ mets to lymph nodes, modified radical neck dissection, clean > scan in 3/99 and 1/00. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 Thanks, , and everyone else who responded to my original post seeking anecdotes of " not so bad " experiences going hypo. The potential disruption in my life from going off of Synthroid (175 mcg) in preparation for RAI has caused me far more anxiety than the surgery I just went through (completion thyroidectomy 8/3). I sailed through the surgery, missing only 1 day of work. Hearing your experiences lessens my anxiety quite a bit, as I know that the disruption may not be as bad as I feared. I'll keep going as long as I can and maybe I'll be back here in a few weeks with another anecdote of a " not so bad " experience going hypo. Thanks again. 7/00 partial thyroidectomy 2.3 cm pap 8/01 completion thyroidectomy, another .5 cm pap now on Cytomel 25 mcg (until this Friday 8/17) RAI (100 mci) to follow > I have always had a fairly 'tolerable' experience going hypo. I have looked > at it as 'mind over matter', if I don't tell myself I'm feeling bad, then I > don't feel bad. It usually works. I keep up my same activities, go to work > everyday, play with my 2 yr. old in the back yard, cook dinner, etc. The > last time I went hypo it really only hit me the last week. I felt drug out > and tired, but continued to work at least. Just keep a positive attitude, > don't try to do too much, but don't suddenly stop your life simply because > you go off your meds. I think by expecting to be miserable, we sometimes > make ourselves that way. > > > TT 7/97, 1 cm pap w/ lymph node mets, 105 mci RAI 9/97, recurrance 2/99, 2.5 > cm nodule w/ mets to lymph nodes, modified radical neck dissection, clean > scan in 3/99 and 1/00. > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.