Re: Very, Very, Very hypo and the effects????

[Guest guest]

Lauri -

Six weeks is the typical length of time to be off meds before a scan.

Some people have a hard time reaching a minimally acceptable TSH

in that time (sometimes 30, sometimes 40 or 50), while some people,

like you (and me) go way up. My TSH reached 200 for my first follow

up scan; for my following scan, I insisted on being tested after 2 weeks

(it was 129).

When was the last time you had your TSH tested?

It sounds like you're still pretty hypo, although my exdperience is that

with each subsequent scan it takes me longer to feel better, in spite of

the fact that my blood tests insist that I'm normal.

I wish I had some good advice for you; somehow I suspect that " have

patience " isn't going to cut it.

Good luck; I hope you're feeling better soon -

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

BTW - are you drinking enough water?

lauri_gallagher wrote:

> I have my first 9 month scan in July. They had me off my Levoxyl for

> 6 weeks without doing blood work (I will know better next time to

> open my mouth). When they did the blood work to check my tsh it was

> at .140 - three times as hypo as necessary for my scan. They had

> only wanted it to go to .40 (I hope I am doing the number right)

> Anyways, it is now 2 months since I have been back on my Levoxyl 200,

> and I still feel tired, muscle aches and headaches, although those

> are getting better. My muscle aches got so bad the doctor gave me

> pain meds while I was hypo, but I am finding there are days when I

> still need to take it, especially after I try to exercise -- to get

> off the 15 pounds I gained while hypo. My whole body just feels

> bad!!!

>

> I was wondering if anyone else has gone through this and any

> suggestions, and when will I get better -- it seems like such a slow

> process and my doctor doesn't have any answers on this one. He was

> pretty surprised Nuclear Medicine had me off my medication for so

> long.

>

> Thanks,

> Lauri

>

> 8-16-01 tt - pap/w one lymph node

> 9-22-01 - 150 millicures of RAI

> 7-8-02 - clean scan

[Guest guest]

Lauri -

Six weeks is the typical length of time to be off meds before a scan.

Some people have a hard time reaching a minimally acceptable TSH

in that time (sometimes 30, sometimes 40 or 50), while some people,

like you (and me) go way up. My TSH reached 200 for my first follow

up scan; for my following scan, I insisted on being tested after 2 weeks

(it was 129).

When was the last time you had your TSH tested?

It sounds like you're still pretty hypo, although my exdperience is that

with each subsequent scan it takes me longer to feel better, in spite of

the fact that my blood tests insist that I'm normal.

I wish I had some good advice for you; somehow I suspect that " have

patience " isn't going to cut it.

Good luck; I hope you're feeling better soon -

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

BTW - are you drinking enough water?

lauri_gallagher wrote:

> I have my first 9 month scan in July. They had me off my Levoxyl for

> 6 weeks without doing blood work (I will know better next time to

> open my mouth). When they did the blood work to check my tsh it was

> at .140 - three times as hypo as necessary for my scan. They had

> only wanted it to go to .40 (I hope I am doing the number right)

> Anyways, it is now 2 months since I have been back on my Levoxyl 200,

> and I still feel tired, muscle aches and headaches, although those

> are getting better. My muscle aches got so bad the doctor gave me

> pain meds while I was hypo, but I am finding there are days when I

> still need to take it, especially after I try to exercise -- to get

> off the 15 pounds I gained while hypo. My whole body just feels

> bad!!!

>

> I was wondering if anyone else has gone through this and any

> suggestions, and when will I get better -- it seems like such a slow

> process and my doctor doesn't have any answers on this one. He was

> pretty surprised Nuclear Medicine had me off my medication for so

> long.

>

> Thanks,

> Lauri

>

> 8-16-01 tt - pap/w one lymph node

> 9-22-01 - 150 millicures of RAI

> 7-8-02 - clean scan

[Guest guest]

Lauri -

Six weeks is the typical length of time to be off meds before a scan.

Some people have a hard time reaching a minimally acceptable TSH

in that time (sometimes 30, sometimes 40 or 50), while some people,

like you (and me) go way up. My TSH reached 200 for my first follow

up scan; for my following scan, I insisted on being tested after 2 weeks

(it was 129).

When was the last time you had your TSH tested?

It sounds like you're still pretty hypo, although my exdperience is that

with each subsequent scan it takes me longer to feel better, in spite of

the fact that my blood tests insist that I'm normal.

I wish I had some good advice for you; somehow I suspect that " have

patience " isn't going to cut it.

Good luck; I hope you're feeling better soon -

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

BTW - are you drinking enough water?

lauri_gallagher wrote:

> I have my first 9 month scan in July. They had me off my Levoxyl for

> 6 weeks without doing blood work (I will know better next time to

> open my mouth). When they did the blood work to check my tsh it was

> at .140 - three times as hypo as necessary for my scan. They had

> only wanted it to go to .40 (I hope I am doing the number right)

> Anyways, it is now 2 months since I have been back on my Levoxyl 200,

> and I still feel tired, muscle aches and headaches, although those

> are getting better. My muscle aches got so bad the doctor gave me

> pain meds while I was hypo, but I am finding there are days when I

> still need to take it, especially after I try to exercise -- to get

> off the 15 pounds I gained while hypo. My whole body just feels

> bad!!!

>

> I was wondering if anyone else has gone through this and any

> suggestions, and when will I get better -- it seems like such a slow

> process and my doctor doesn't have any answers on this one. He was

> pretty surprised Nuclear Medicine had me off my medication for so

> long.

>

> Thanks,

> Lauri

>

> 8-16-01 tt - pap/w one lymph node

> 9-22-01 - 150 millicures of RAI

> 7-8-02 - clean scan

[Guest guest]

,

It's good to hear from someone that went through being so hypo -- you

were worse than me.

I will drink more water and see if that helps. But I guess it could

just be taking me longer to bounce back plus the fact I was soooo

hypo.

My doc. said we would do my tsh in a couple of months. That sounds

like tooooo long for me though. I will push it if I don't feel

better soon.

I was also wondering if my levoxyl dose needs to be adjusted. Just

because it worked before my scan, doesn't mean it is working for me

now, I guess?????

I will know next time to do the blood work earlier. I guess am like

you and go hypo very quickly. I wonder what makes some people go

hypo quicker???

Lauri

tt 8-16-01 pap w/ one lymph node

9-22-01 RAI 150 mci

7-8-02 clean scan

>

> > I have my first 9 month scan in July. They had me off my

Levoxyl for

> > 6 weeks without doing blood work (I will know better next time to

> > open my mouth). When they did the blood work to check my tsh it

was

> > at .140 - three times as hypo as necessary for my scan. They had

> > only wanted it to go to .40 (I hope I am doing the number right)

> > Anyways, it is now 2 months since I have been back on my Levoxyl

200,

> > and I still feel tired, muscle aches and headaches, although those

> > are getting better. My muscle aches got so bad the doctor gave me

> > pain meds while I was hypo, but I am finding there are days when I

> > still need to take it, especially after I try to exercise -- to

get

> > off the 15 pounds I gained while hypo. My whole body just feels

> > bad!!!

> >

> > I was wondering if anyone else has gone through this and any

> > suggestions, and when will I get better -- it seems like such a

slow

> > process and my doctor doesn't have any answers on this one. He

was

> > pretty surprised Nuclear Medicine had me off my medication for so

> > long.

> >

> > Thanks,

> > Lauri

> >

> > 8-16-01 tt - pap/w one lymph node

> > 9-22-01 - 150 millicures of RAI

> > 7-8-02 - clean scan

>

>

>

[Guest guest]

,

It's good to hear from someone that went through being so hypo -- you

were worse than me.

I will drink more water and see if that helps. But I guess it could

just be taking me longer to bounce back plus the fact I was soooo

hypo.

My doc. said we would do my tsh in a couple of months. That sounds

like tooooo long for me though. I will push it if I don't feel

better soon.

I was also wondering if my levoxyl dose needs to be adjusted. Just

because it worked before my scan, doesn't mean it is working for me

now, I guess?????

I will know next time to do the blood work earlier. I guess am like

you and go hypo very quickly. I wonder what makes some people go

hypo quicker???

Lauri

tt 8-16-01 pap w/ one lymph node

9-22-01 RAI 150 mci

7-8-02 clean scan

>

> > I have my first 9 month scan in July. They had me off my

Levoxyl for

> > 6 weeks without doing blood work (I will know better next time to

> > open my mouth). When they did the blood work to check my tsh it

was

> > at .140 - three times as hypo as necessary for my scan. They had

> > only wanted it to go to .40 (I hope I am doing the number right)

> > Anyways, it is now 2 months since I have been back on my Levoxyl

200,

> > and I still feel tired, muscle aches and headaches, although those

> > are getting better. My muscle aches got so bad the doctor gave me

> > pain meds while I was hypo, but I am finding there are days when I

> > still need to take it, especially after I try to exercise -- to

get

> > off the 15 pounds I gained while hypo. My whole body just feels

> > bad!!!

> >

> > I was wondering if anyone else has gone through this and any

> > suggestions, and when will I get better -- it seems like such a

slow

> > process and my doctor doesn't have any answers on this one. He

was

> > pretty surprised Nuclear Medicine had me off my medication for so

> > long.

> >

> > Thanks,

> > Lauri

> >

> > 8-16-01 tt - pap/w one lymph node

> > 9-22-01 - 150 millicures of RAI

> > 7-8-02 - clean scan

>

>

>

[Guest guest]

,

It's good to hear from someone that went through being so hypo -- you

were worse than me.

I will drink more water and see if that helps. But I guess it could

just be taking me longer to bounce back plus the fact I was soooo

hypo.

My doc. said we would do my tsh in a couple of months. That sounds

like tooooo long for me though. I will push it if I don't feel

better soon.

I was also wondering if my levoxyl dose needs to be adjusted. Just

because it worked before my scan, doesn't mean it is working for me

now, I guess?????

I will know next time to do the blood work earlier. I guess am like

you and go hypo very quickly. I wonder what makes some people go

hypo quicker???

Lauri

tt 8-16-01 pap w/ one lymph node

9-22-01 RAI 150 mci

7-8-02 clean scan

>

> > I have my first 9 month scan in July. They had me off my

Levoxyl for

> > 6 weeks without doing blood work (I will know better next time to

> > open my mouth). When they did the blood work to check my tsh it

was

> > at .140 - three times as hypo as necessary for my scan. They had

> > only wanted it to go to .40 (I hope I am doing the number right)

> > Anyways, it is now 2 months since I have been back on my Levoxyl

200,

> > and I still feel tired, muscle aches and headaches, although those

> > are getting better. My muscle aches got so bad the doctor gave me

> > pain meds while I was hypo, but I am finding there are days when I

> > still need to take it, especially after I try to exercise -- to

get

> > off the 15 pounds I gained while hypo. My whole body just feels

> > bad!!!

> >

> > I was wondering if anyone else has gone through this and any

> > suggestions, and when will I get better -- it seems like such a

slow

> > process and my doctor doesn't have any answers on this one. He

was

> > pretty surprised Nuclear Medicine had me off my medication for so

> > long.

> >

> > Thanks,

> > Lauri

> >

> > 8-16-01 tt - pap/w one lymph node

> > 9-22-01 - 150 millicures of RAI

> > 7-8-02 - clean scan

>

>

>

[Guest guest]

lauri_gallagher wrote:

> ,

>

> It's good to hear from someone that went through being so hypo -- you

> were worse than me.

And there are others worse than both of us :-)

> My doc. said we would do my tsh in a couple of months. That sounds

> like tooooo long for me though. I will push it if I don't feel

> better soon.

Since you already have your established dose, your TSH should be back to

where it was within 6-8 weeks; I don't think there's much to be gained by

waiting longer.

> I was also wondering if my levoxyl dose needs to be adjusted. Just

> because it worked before my scan, doesn't mean it is working for me

> now, I guess?????

It's possible, but I'm guessing not that much has changed in your body that

would call for a dosage change.

> I will know next time to do the blood work earlier. I guess am like

> you and go hypo very quickly. I wonder what makes some people go

> hypo quicker???

I've heard it's related to extreme intelligence and high creativity :-)

-

[Guest guest]

lauri_gallagher wrote:

> ,

>

> It's good to hear from someone that went through being so hypo -- you

> were worse than me.

And there are others worse than both of us :-)

> My doc. said we would do my tsh in a couple of months. That sounds

> like tooooo long for me though. I will push it if I don't feel

> better soon.

Since you already have your established dose, your TSH should be back to

where it was within 6-8 weeks; I don't think there's much to be gained by

waiting longer.

> I was also wondering if my levoxyl dose needs to be adjusted. Just

> because it worked before my scan, doesn't mean it is working for me

> now, I guess?????

It's possible, but I'm guessing not that much has changed in your body that

would call for a dosage change.

> I will know next time to do the blood work earlier. I guess am like

> you and go hypo very quickly. I wonder what makes some people go

> hypo quicker???

I've heard it's related to extreme intelligence and high creativity :-)

-

[Guest guest]

lauri_gallagher wrote:

> ,

>

> It's good to hear from someone that went through being so hypo -- you

> were worse than me.

And there are others worse than both of us :-)

> My doc. said we would do my tsh in a couple of months. That sounds

> like tooooo long for me though. I will push it if I don't feel

> better soon.

Since you already have your established dose, your TSH should be back to

where it was within 6-8 weeks; I don't think there's much to be gained by

waiting longer.

> I was also wondering if my levoxyl dose needs to be adjusted. Just

> because it worked before my scan, doesn't mean it is working for me

> now, I guess?????

It's possible, but I'm guessing not that much has changed in your body that

would call for a dosage change.

> I will know next time to do the blood work earlier. I guess am like

> you and go hypo very quickly. I wonder what makes some people go

> hypo quicker???

I've heard it's related to extreme intelligence and high creativity :-)

-

[Guest guest]

,

I can't imagine being more hypo than I was. I felt like my whole

body was shutting down.

High intelligence and high creativity -- I will go with that one for

now.

Thanks for the help soooo fast.

Lauri

>

> > ,

> >

> > It's good to hear from someone that went through being so hypo --

you

> > were worse than me.

>

> And there are others worse than both of us :-)

>

> > My doc. said we would do my tsh in a couple of months. That

sounds

> > like tooooo long for me though. I will push it if I don't feel

> > better soon.

>

> Since you already have your established dose, your TSH should be

back to

> where it was within 6-8 weeks; I don't think there's much to be

gained by

> waiting longer.

>

> > I was also wondering if my levoxyl dose needs to be adjusted.

Just

> > because it worked before my scan, doesn't mean it is working for

me

> > now, I guess?????

>

> It's possible, but I'm guessing not that much has changed in your

body that

> would call for a dosage change.

>

> > I will know next time to do the blood work earlier. I guess am

like

> > you and go hypo very quickly. I wonder what makes some people go

> > hypo quicker???

>

> I've heard it's related to extreme intelligence and high

creativity :-)

>

>

> -

>

>

>

>

[Guest guest]

,

I can't imagine being more hypo than I was. I felt like my whole

body was shutting down.

High intelligence and high creativity -- I will go with that one for

now.

Thanks for the help soooo fast.

Lauri

>

> > ,

> >

> > It's good to hear from someone that went through being so hypo --

you

> > were worse than me.

>

> And there are others worse than both of us :-)

>

> > My doc. said we would do my tsh in a couple of months. That

sounds

> > like tooooo long for me though. I will push it if I don't feel

> > better soon.

>

> Since you already have your established dose, your TSH should be

back to

> where it was within 6-8 weeks; I don't think there's much to be

gained by

> waiting longer.

>

> > I was also wondering if my levoxyl dose needs to be adjusted.

Just

> > because it worked before my scan, doesn't mean it is working for

me

> > now, I guess?????

>

> It's possible, but I'm guessing not that much has changed in your

body that

> would call for a dosage change.

>

> > I will know next time to do the blood work earlier. I guess am

like

> > you and go hypo very quickly. I wonder what makes some people go

> > hypo quicker???

>

> I've heard it's related to extreme intelligence and high

creativity :-)

>

>

> -

>

>

>

>

[Guest guest]

Hi Lauri,

Just read your post & it brings back too many memories! What

caught my eye was the pain in your muscles. I ended up pinching a

nerve in each of my shoulders right after RAI. Though I don't know

for sure, I think it happened just from raising up on my arm in bed,

that small a movement & I thought I might die from the agony! I then

read that when hypo, your muscles are very likely to injure easily.

Why? I dunno.

Though I'm on Synthroid (is it the same as Levoxyl?), it felt like

it took months before I felt like anything close to normal. I would

insist on a blood test in a month, not two. I feel like my whole

internal makeup was different from one procedure to another. What

worked once may not be enough now, but it makes me mad that doctors

think you've got all the time in the world to sit around & wait to

feel like getting out of bed. If you've got the energy, push for

earlier tests.

My best advice beyond that would be exercise, as much as I hated

reading that from kabob earlier this year, it really has made a

huge difference. Given your pain, I wouldn't start with anything

more intense than walking or light yoga. Just enough to get your

blood pumping a little faster, but don't invite any injuries. Start

slow. But start. You feeling normal will seem to come out of

nowhere when it finally does happen. Keep the faith!

lymph dis 5/01, TT 6/01, dx foll.-thy & all lymphs; RAI 8/01; clean

scan 9/01; current TSH .04 on .125 synthroid

> >

> > > I have my first 9 month scan in July. They had me off my

> Levoxyl for

> > > 6 weeks without doing blood work (I will know better next time

to

> > > open my mouth). When they did the blood work to check my tsh

it

> was

> > > at .140 - three times as hypo as necessary for my scan. They

had

> > > only wanted it to go to .40 (I hope I am doing the number right)

> > > Anyways, it is now 2 months since I have been back on my

Levoxyl

> 200,

> > > and I still feel tired, muscle aches and headaches, although

those

> > > are getting better. My muscle aches got so bad the doctor gave

me

> > > pain meds while I was hypo, but I am finding there are days

when I

> > > still need to take it, especially after I try to exercise -- to

> get

> > > off the 15 pounds I gained while hypo. My whole body just feels

> > > bad!!!

> > >

> > > I was wondering if anyone else has gone through this and any

> > > suggestions, and when will I get better -- it seems like such a

> slow

> > > process and my doctor doesn't have any answers on this one. He

> was

> > > pretty surprised Nuclear Medicine had me off my medication for

so

> > > long.

> > >

> > > Thanks,

> > > Lauri

> > >

> > > 8-16-01 tt - pap/w one lymph node

> > > 9-22-01 - 150 millicures of RAI

> > > 7-8-02 - clean scan

> >

> >

> >

[Guest guest]

Hi Lauri,

Just read your post & it brings back too many memories! What

caught my eye was the pain in your muscles. I ended up pinching a

nerve in each of my shoulders right after RAI. Though I don't know

for sure, I think it happened just from raising up on my arm in bed,

that small a movement & I thought I might die from the agony! I then

read that when hypo, your muscles are very likely to injure easily.

Why? I dunno.

Though I'm on Synthroid (is it the same as Levoxyl?), it felt like

it took months before I felt like anything close to normal. I would

insist on a blood test in a month, not two. I feel like my whole

internal makeup was different from one procedure to another. What

worked once may not be enough now, but it makes me mad that doctors

think you've got all the time in the world to sit around & wait to

feel like getting out of bed. If you've got the energy, push for

earlier tests.

My best advice beyond that would be exercise, as much as I hated

reading that from kabob earlier this year, it really has made a

huge difference. Given your pain, I wouldn't start with anything

more intense than walking or light yoga. Just enough to get your

blood pumping a little faster, but don't invite any injuries. Start

slow. But start. You feeling normal will seem to come out of

nowhere when it finally does happen. Keep the faith!

lymph dis 5/01, TT 6/01, dx foll.-thy & all lymphs; RAI 8/01; clean

scan 9/01; current TSH .04 on .125 synthroid

> >

> > > I have my first 9 month scan in July. They had me off my

> Levoxyl for

> > > 6 weeks without doing blood work (I will know better next time

to

> > > open my mouth). When they did the blood work to check my tsh

it

> was

> > > at .140 - three times as hypo as necessary for my scan. They

had

> > > only wanted it to go to .40 (I hope I am doing the number right)

> > > Anyways, it is now 2 months since I have been back on my

Levoxyl

> 200,

> > > and I still feel tired, muscle aches and headaches, although

those

> > > are getting better. My muscle aches got so bad the doctor gave

me

> > > pain meds while I was hypo, but I am finding there are days

when I

> > > still need to take it, especially after I try to exercise -- to

> get

> > > off the 15 pounds I gained while hypo. My whole body just feels

> > > bad!!!

> > >

> > > I was wondering if anyone else has gone through this and any

> > > suggestions, and when will I get better -- it seems like such a

> slow

> > > process and my doctor doesn't have any answers on this one. He

> was

> > > pretty surprised Nuclear Medicine had me off my medication for

so

> > > long.

> > >

> > > Thanks,

> > > Lauri

> > >

> > > 8-16-01 tt - pap/w one lymph node

> > > 9-22-01 - 150 millicures of RAI

> > > 7-8-02 - clean scan

> >

> >

> >

[Guest guest]

Hi Lauri,

Just read your post & it brings back too many memories! What

caught my eye was the pain in your muscles. I ended up pinching a

nerve in each of my shoulders right after RAI. Though I don't know

for sure, I think it happened just from raising up on my arm in bed,

that small a movement & I thought I might die from the agony! I then

read that when hypo, your muscles are very likely to injure easily.

Why? I dunno.

Though I'm on Synthroid (is it the same as Levoxyl?), it felt like

it took months before I felt like anything close to normal. I would

insist on a blood test in a month, not two. I feel like my whole

internal makeup was different from one procedure to another. What

worked once may not be enough now, but it makes me mad that doctors

think you've got all the time in the world to sit around & wait to

feel like getting out of bed. If you've got the energy, push for

earlier tests.

My best advice beyond that would be exercise, as much as I hated

reading that from kabob earlier this year, it really has made a

huge difference. Given your pain, I wouldn't start with anything

more intense than walking or light yoga. Just enough to get your

blood pumping a little faster, but don't invite any injuries. Start

slow. But start. You feeling normal will seem to come out of

nowhere when it finally does happen. Keep the faith!

lymph dis 5/01, TT 6/01, dx foll.-thy & all lymphs; RAI 8/01; clean

scan 9/01; current TSH .04 on .125 synthroid

> >

> > > I have my first 9 month scan in July. They had me off my

> Levoxyl for

> > > 6 weeks without doing blood work (I will know better next time

to

> > > open my mouth). When they did the blood work to check my tsh

it

> was

> > > at .140 - three times as hypo as necessary for my scan. They

had

> > > only wanted it to go to .40 (I hope I am doing the number right)

> > > Anyways, it is now 2 months since I have been back on my

Levoxyl

> 200,

> > > and I still feel tired, muscle aches and headaches, although

those

> > > are getting better. My muscle aches got so bad the doctor gave

me

> > > pain meds while I was hypo, but I am finding there are days

when I

> > > still need to take it, especially after I try to exercise -- to

> get

> > > off the 15 pounds I gained while hypo. My whole body just feels

> > > bad!!!

> > >

> > > I was wondering if anyone else has gone through this and any

> > > suggestions, and when will I get better -- it seems like such a

> slow

> > > process and my doctor doesn't have any answers on this one. He

> was

> > > pretty surprised Nuclear Medicine had me off my medication for

so

> > > long.

> > >

> > > Thanks,

> > > Lauri

> > >

> > > 8-16-01 tt - pap/w one lymph node

> > > 9-22-01 - 150 millicures of RAI

> > > 7-8-02 - clean scan

> >

> >

> >

[Guest guest]

,

It's so good to hear other stories out there. All I keep hearing in

my head is my doctor saying, " You have been back on your levoxyl for

6 weeks, you should be feeling better, " But the fact is I am not.

So it's comforting to know that others take months to get back to

normal too and it helps give me the faith to just hang in there. I

am learning that it's just a slow process for me and everyone is

different. I will know next time more of what to expect. I was

thinking the recovery after my first scan would be quicker than after

RAI since they have my medication adjusted, I think.

Exercising seems to make my muscles really hurt the next day and I

really pay for it. So now I am scared to do anything. So maybe I

will start off with some light walking for now. My husband and I

played tennis a few weeks ago and I was in so much pain the next day

that now I am scared to play again.

Lauri

tt 8-16-01 pap w/ one lymph

9-22-01 RAI 150 mci

7-8-02 clean scan

> > >

> > > > I have my first 9 month scan in July. They had me off my

> > Levoxyl for

> > > > 6 weeks without doing blood work (I will know better next

time

> to

> > > > open my mouth). When they did the blood work to check my tsh

> it

> > was

> > > > at .140 - three times as hypo as necessary for my scan. They

> had

> > > > only wanted it to go to .40 (I hope I am doing the number

right)

> > > > Anyways, it is now 2 months since I have been back on my

> Levoxyl

> > 200,

> > > > and I still feel tired, muscle aches and headaches, although

> those

> > > > are getting better. My muscle aches got so bad the doctor

gave

> me

> > > > pain meds while I was hypo, but I am finding there are days

> when I

> > > > still need to take it, especially after I try to exercise --

to

> > get

> > > > off the 15 pounds I gained while hypo. My whole body just

feels

> > > > bad!!!

> > > >

> > > > I was wondering if anyone else has gone through this and any

> > > > suggestions, and when will I get better -- it seems like such

a

> > slow

> > > > process and my doctor doesn't have any answers on this one.

He

> > was

> > > > pretty surprised Nuclear Medicine had me off my medication

for

> so

> > > > long.

> > > >

> > > > Thanks,

> > > > Lauri

> > > >

> > > > 8-16-01 tt - pap/w one lymph node

> > > > 9-22-01 - 150 millicures of RAI

> > > > 7-8-02 - clean scan

> > >

> > >

> > >

[Guest guest]

> Though I'm on Synthroid (is it the same as Levoxyl?),

Same basic medication (levothyroxine) - different fillers. MUCH

cheaper than Synthroid, though.

Cheers,

Alisa

2/15/2002: Nodule found during bad sore throat

2/27/2002: FNA - suspicious for pap

3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!!

4/9/2002: TT - Stage 2 pap encapsulated in 2.5 x 2 x 1.6 cm nodule,

Hashimotos discovered

5/28/2002: TBS (2 mCi dose on 5/24) and 100 mCi RAI

6/6/2002: TBS - No sign of mets

Currently - TSH 0.06, 140mcg Levoxyl

Age: 48 Location: near Seattle WA

Please feel free to email me privately anytime

Check out my posts:

Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472

My LID - http://groups.yahoo.com/group/Thyca/message/15872

My RAI - http://groups.yahoo.com/group/Thyca/message/15873

[Guest guest]

> Exercising seems to make my muscles really hurt the next day and I

> really pay for it. So now I am scared to do anything. So maybe I

> will start off with some light walking for now. My husband and I

> played tennis a few weeks ago and I was in so much pain the next day

> that now I am scared to play again.

One problem many of us have is that we decide " I REALLY need to

exercise " , and we try to make for lost time by doing too much, too

soon. Probably the amount of time and how hard you played tennis was

why you were in pain. Start slowly and build up to what you WANT to

be doing.

Cheers,

Alisa

2/15/2002: Nodule found during bad sore throat

2/27/2002: FNA - suspicious for pap

3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!!

4/9/2002: TT - Stage 2 pap encapsulated in 2.5 x 2 x 1.6 cm nodule,

Hashimotos discovered

5/28/2002: TBS (2 mCi dose on 5/24) and 100 mCi RAI

6/6/2002: TBS - No sign of mets

Currently - TSH 0.06, 140mcg Levoxyl

Age: 48 Location: near Seattle WA

Please feel free to email me privately anytime

Check out my posts:

Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472

My LID - http://groups.yahoo.com/group/Thyca/message/15872

My RAI - http://groups.yahoo.com/group/Thyca/message/15873

[Guest guest]

> Exercising seems to make my muscles really hurt the next day and I

> really pay for it. So now I am scared to do anything. So maybe I

> will start off with some light walking for now. My husband and I

> played tennis a few weeks ago and I was in so much pain the next day

> that now I am scared to play again.

One problem many of us have is that we decide " I REALLY need to

exercise " , and we try to make for lost time by doing too much, too

soon. Probably the amount of time and how hard you played tennis was

why you were in pain. Start slowly and build up to what you WANT to

be doing.

Cheers,

Alisa

2/15/2002: Nodule found during bad sore throat

2/27/2002: FNA - suspicious for pap

3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!!

4/9/2002: TT - Stage 2 pap encapsulated in 2.5 x 2 x 1.6 cm nodule,

Hashimotos discovered

5/28/2002: TBS (2 mCi dose on 5/24) and 100 mCi RAI

6/6/2002: TBS - No sign of mets

Currently - TSH 0.06, 140mcg Levoxyl

Age: 48 Location: near Seattle WA

Please feel free to email me privately anytime

Check out my posts:

Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472

My LID - http://groups.yahoo.com/group/Thyca/message/15872

My RAI - http://groups.yahoo.com/group/Thyca/message/15873

[Guest guest]

Re: Very, Very, Very hypo and the effects????

> Though I'm on Synthroid (is it the same as Levoxyl?),

They have the same active ingredient but use different dyes and fillers. And

Levoxyl is a lot cheaper; it's often been called " generic " , but it isn't,

it's just another brand name. Some people will do better on one or another

brand; some people have adverse reactions to the dyes or fillers. For most

of us it doesn't really matter.

> it felt like it took months before I felt like anything close to normal.

I would insist on a blood test in a month, not two.

>

It takes a good 6-8 weeks for the medication and tsh levels to stablize.

Testing too soon might be counter-productive. I had a test 6 weeks after my

last scan (I year post-treatment); TSH was suppressed but I wasn't yet

feeling back to " me " . My dosage did not change (and I had switched from

Synthroid to Levoxyl when resuming meds, doing it then because I was going

to be tested so the brand change wouldn't involve any extra testing) and

within a few more weeks I was fine. I am on the " same " dose (.15) as I was

taking with Synthroid, but that isn't always the case.

> If you've got the energy, push for earlier tests.

It's not just a matter of how much time or energy you have. You have to give

the meds time to work. Nagging the docs is not going to change the laws of

physics or biology.

bj

(start Cytomel 10/9 for Nov. scan.)

[Guest guest]

Re: Very, Very, Very hypo and the effects????

> Though I'm on Synthroid (is it the same as Levoxyl?),

They have the same active ingredient but use different dyes and fillers. And

Levoxyl is a lot cheaper; it's often been called " generic " , but it isn't,

it's just another brand name. Some people will do better on one or another

brand; some people have adverse reactions to the dyes or fillers. For most

of us it doesn't really matter.

> it felt like it took months before I felt like anything close to normal.

I would insist on a blood test in a month, not two.

>

It takes a good 6-8 weeks for the medication and tsh levels to stablize.

Testing too soon might be counter-productive. I had a test 6 weeks after my

last scan (I year post-treatment); TSH was suppressed but I wasn't yet

feeling back to " me " . My dosage did not change (and I had switched from

Synthroid to Levoxyl when resuming meds, doing it then because I was going

to be tested so the brand change wouldn't involve any extra testing) and

within a few more weeks I was fine. I am on the " same " dose (.15) as I was

taking with Synthroid, but that isn't always the case.

> If you've got the energy, push for earlier tests.

It's not just a matter of how much time or energy you have. You have to give

the meds time to work. Nagging the docs is not going to change the laws of

physics or biology.

bj

(start Cytomel 10/9 for Nov. scan.)

[Guest guest]

Re: Very, Very, Very hypo and the effects????

> Though I'm on Synthroid (is it the same as Levoxyl?),

They have the same active ingredient but use different dyes and fillers. And

Levoxyl is a lot cheaper; it's often been called " generic " , but it isn't,

it's just another brand name. Some people will do better on one or another

brand; some people have adverse reactions to the dyes or fillers. For most

of us it doesn't really matter.

> it felt like it took months before I felt like anything close to normal.

I would insist on a blood test in a month, not two.

>

It takes a good 6-8 weeks for the medication and tsh levels to stablize.

Testing too soon might be counter-productive. I had a test 6 weeks after my

last scan (I year post-treatment); TSH was suppressed but I wasn't yet

feeling back to " me " . My dosage did not change (and I had switched from

Synthroid to Levoxyl when resuming meds, doing it then because I was going

to be tested so the brand change wouldn't involve any extra testing) and

within a few more weeks I was fine. I am on the " same " dose (.15) as I was

taking with Synthroid, but that isn't always the case.

> If you've got the energy, push for earlier tests.

It's not just a matter of how much time or energy you have. You have to give

the meds time to work. Nagging the docs is not going to change the laws of

physics or biology.

bj

(start Cytomel 10/9 for Nov. scan.)

[Guest guest]

Lauri,

Glad I could be of some reassurance. It is definitely easy to push

yourself too hard with recovery. As I told my family practice doc

about 4 mos after RAI, " the world doesn't give a damn that I've had a

hard year. It just keeps spinning at the same old pace! " So take

the exercise thing slowly, no matter what your brain tells you you

SHOULD be able to do. And if you can get an exercise buddy (my

husband did'n't care too much for taking strolls!) to walk or stretch

with you, he or she can keep you from overexerting.

keep your chin up & keep in touch!

angela

fifthbeedle@...

> > > >

> > > > > I have my first 9 month scan in July. They had me off my

> > > Levoxyl for

> > > > > 6 weeks without doing blood work (I will know better next

> time

> > to

> > > > > open my mouth). When they did the blood work to check my

tsh

> > it

> > > was

> > > > > at .140 - three times as hypo as necessary for my scan.

They

> > had

> > > > > only wanted it to go to .40 (I hope I am doing the number

> right)

> > > > > Anyways, it is now 2 months since I have been back on my

> > Levoxyl

> > > 200,

> > > > > and I still feel tired, muscle aches and headaches,

although

> > those

> > > > > are getting better. My muscle aches got so bad the doctor

> gave

> > me

> > > > > pain meds while I was hypo, but I am finding there are days

> > when I

> > > > > still need to take it, especially after I try to exercise --

> to

> > > get

> > > > > off the 15 pounds I gained while hypo. My whole body just

> feels

> > > > > bad!!!

> > > > >

> > > > > I was wondering if anyone else has gone through this and any

> > > > > suggestions, and when will I get better -- it seems like

such

> a

> > > slow

> > > > > process and my doctor doesn't have any answers on this

one.

> He

> > > was

> > > > > pretty surprised Nuclear Medicine had me off my medication

> for

> > so

> > > > > long.

> > > > >

> > > > > Thanks,

> > > > > Lauri

> > > > >

> > > > > 8-16-01 tt - pap/w one lymph node

> > > > > 9-22-01 - 150 millicures of RAI

> > > > > 7-8-02 - clean scan

> > > >

> > > >

> > > >

[Guest guest]

Lauri,

Glad I could be of some reassurance. It is definitely easy to push

yourself too hard with recovery. As I told my family practice doc

about 4 mos after RAI, " the world doesn't give a damn that I've had a

hard year. It just keeps spinning at the same old pace! " So take

the exercise thing slowly, no matter what your brain tells you you

SHOULD be able to do. And if you can get an exercise buddy (my

husband did'n't care too much for taking strolls!) to walk or stretch

with you, he or she can keep you from overexerting.

keep your chin up & keep in touch!

angela

fifthbeedle@...

> > > >

> > > > > I have my first 9 month scan in July. They had me off my

> > > Levoxyl for

> > > > > 6 weeks without doing blood work (I will know better next

> time

> > to

> > > > > open my mouth). When they did the blood work to check my

tsh

> > it

> > > was

> > > > > at .140 - three times as hypo as necessary for my scan.

They

> > had

> > > > > only wanted it to go to .40 (I hope I am doing the number

> right)

> > > > > Anyways, it is now 2 months since I have been back on my

> > Levoxyl

> > > 200,

> > > > > and I still feel tired, muscle aches and headaches,

although

> > those

> > > > > are getting better. My muscle aches got so bad the doctor

> gave

> > me

> > > > > pain meds while I was hypo, but I am finding there are days

> > when I

> > > > > still need to take it, especially after I try to exercise --

> to

> > > get

> > > > > off the 15 pounds I gained while hypo. My whole body just

> feels

> > > > > bad!!!

> > > > >

> > > > > I was wondering if anyone else has gone through this and any

> > > > > suggestions, and when will I get better -- it seems like

such

> a

> > > slow

> > > > > process and my doctor doesn't have any answers on this

one.

> He

> > > was

> > > > > pretty surprised Nuclear Medicine had me off my medication

> for

> > so

> > > > > long.

> > > > >

> > > > > Thanks,

> > > > > Lauri

> > > > >

> > > > > 8-16-01 tt - pap/w one lymph node

> > > > > 9-22-01 - 150 millicures of RAI

> > > > > 7-8-02 - clean scan

> > > >

> > > >

> > > >

[Guest guest]

Hi,

I just got my synthroid and cytomel back last week after being off for way

too long. Part of the problem was my doc told me when to stop meds and then

his secretary

didn't bother to call and schedule it till the next week. I ended up having a

Tsh of

116, 9 days before i got my meds back. I have no idea what it eventually

climbed to.

I ended up being out of work for a month. I still don't know if I will have a

hard time

with short term disablity. because we all have such different experiences the

medical

community doesn't seem to have a handle on what many of us really go through

when hypo. they say this has no long term effects, but i find it hard to

belive.

sorry for venting

tt 6/00

4 mi scan clean 8/00

30 mi scan clean 9/02