THREE MONTHS POST RAI, FEELINGS TO EXPECT

[Guest guest]

Hi,

I had RAI 3 months ago and the last tsh had come up from 0.021 to 4.81

The range on this lab is .500 to 5.700, so that is good. My ft4 is

slight;y below normal now at .77 their range .90 to 1.90, it's

looking like I am half there.I go for these same tests every 2 weeks

now, this Thursday.

Does anyone know how you start to feel when you actually becoming

hypo instead hyper at this point? Has anyone who received RAI had any

experiences with the going from one extreme to the other? How long

did it take for you? Like i mentioned it has actually been over 3

months now so I am a bit anxious as my auto antibodies are still very

high.

He told me the would still be there but the thyroid would not

function. Does anyone know if these anti bodies can attack somewhere

else in your body? I have had autoimmune problems all my life but

this was the worse thing I had so far. I guess I am afraid of some

other immune problems. Any input would be greatly appreciated.

Thanks,

Vicky

[Guest guest]

Hi, Vicky... have they started you on replacement hormone yet?

You're already hypo... the current range for TSH is .3 to 3.0... you're well over that... and most folks feel best with a TSH under 1.0 once on replacement...

More important is that your Free T4 is under range.. that means that you do not have enough thyroid hormone to be able to function properly and feel well.

The doc might be waiting to see if there is any remaining gland function. They did that with me, too, I had RAI 15 years ago.... I was monitored every two weeks for the first six months after RAI, watching to see if the gland would rebound... When they were sure that it wouldn't, the started me on replacement hormone.

If you had Grave's that caused your thyroid to go hyper... then yes, the antibodies can decide to attack else where... doesn't happen with everyone but the chance is there... the most common site of attack is the eyes...

You can read up on that or check out the Grave's support group, to get more detailed info on what signs to watch for ..... It's called TED, Thyroid Eye Disease. If I remember the link correctly for the Grave's support group it's:

http://health.groups.yahoo.com/group/Gravessupport/

Have they been monitoring your pulse and reflexes? They did that knee bonk thing on me each time I came in... by the time they determined that my gland was shot it was taking a full ten seconds after they bonked my knee before my leg would kick... that's how slow my body, my reflexes were....

Topper ()

On Mon, 23 Jan 2006 05:18:03 -0000 "Vicky" writes:

Hi,I had RAI 3 months ago and the last tsh had come up from 0.021 to 4.81The range on this lab is .500 to 5.700, so that is good. My ft4 is slight;y below normal now at .77 their range .90 to 1.90, it's looking like I am half there.I go for these same tests every 2 weeks now, this Thursday. Does anyone know how you start to feel when you actually becoming hypo instead hyper at this point? Has anyone who received RAI had any experiences with the going from one extreme to the other? How long did it take for you? Like i mentioned it has actually been over 3 months now so I am a bit anxious as my auto antibodies are still very high.He told me the would still be there but the thyroid would not function. Does anyone know if these anti bodies can attack somewhere else in your body? I have had autoimmune problems all my life but this was the worse thing I had so far. I guess I am afraid of some other immune problems. Any input would be greatly appreciated.Thanks,Vicky

[Guest guest]

Hi, Vicky... have they started you on replacement hormone yet?

You're already hypo... the current range for TSH is .3 to 3.0... you're well over that... and most folks feel best with a TSH under 1.0 once on replacement...

More important is that your Free T4 is under range.. that means that you do not have enough thyroid hormone to be able to function properly and feel well.

The doc might be waiting to see if there is any remaining gland function. They did that with me, too, I had RAI 15 years ago.... I was monitored every two weeks for the first six months after RAI, watching to see if the gland would rebound... When they were sure that it wouldn't, the started me on replacement hormone.

If you had Grave's that caused your thyroid to go hyper... then yes, the antibodies can decide to attack else where... doesn't happen with everyone but the chance is there... the most common site of attack is the eyes...

You can read up on that or check out the Grave's support group, to get more detailed info on what signs to watch for ..... It's called TED, Thyroid Eye Disease. If I remember the link correctly for the Grave's support group it's:

http://health.groups.yahoo.com/group/Gravessupport/

Have they been monitoring your pulse and reflexes? They did that knee bonk thing on me each time I came in... by the time they determined that my gland was shot it was taking a full ten seconds after they bonked my knee before my leg would kick... that's how slow my body, my reflexes were....

Topper ()

On Mon, 23 Jan 2006 05:18:03 -0000 "Vicky" writes:

Hi,I had RAI 3 months ago and the last tsh had come up from 0.021 to 4.81The range on this lab is .500 to 5.700, so that is good. My ft4 is slight;y below normal now at .77 their range .90 to 1.90, it's looking like I am half there.I go for these same tests every 2 weeks now, this Thursday. Does anyone know how you start to feel when you actually becoming hypo instead hyper at this point? Has anyone who received RAI had any experiences with the going from one extreme to the other? How long did it take for you? Like i mentioned it has actually been over 3 months now so I am a bit anxious as my auto antibodies are still very high.He told me the would still be there but the thyroid would not function. Does anyone know if these anti bodies can attack somewhere else in your body? I have had autoimmune problems all my life but this was the worse thing I had so far. I guess I am afraid of some other immune problems. Any input would be greatly appreciated.Thanks,Vicky

[Guest guest]

Hi, Vicky... have they started you on replacement hormone yet?

You're already hypo... the current range for TSH is .3 to 3.0... you're well over that... and most folks feel best with a TSH under 1.0 once on replacement...

More important is that your Free T4 is under range.. that means that you do not have enough thyroid hormone to be able to function properly and feel well.

The doc might be waiting to see if there is any remaining gland function. They did that with me, too, I had RAI 15 years ago.... I was monitored every two weeks for the first six months after RAI, watching to see if the gland would rebound... When they were sure that it wouldn't, the started me on replacement hormone.

If you had Grave's that caused your thyroid to go hyper... then yes, the antibodies can decide to attack else where... doesn't happen with everyone but the chance is there... the most common site of attack is the eyes...

You can read up on that or check out the Grave's support group, to get more detailed info on what signs to watch for ..... It's called TED, Thyroid Eye Disease. If I remember the link correctly for the Grave's support group it's:

http://health.groups.yahoo.com/group/Gravessupport/

Have they been monitoring your pulse and reflexes? They did that knee bonk thing on me each time I came in... by the time they determined that my gland was shot it was taking a full ten seconds after they bonked my knee before my leg would kick... that's how slow my body, my reflexes were....

Topper ()

On Mon, 23 Jan 2006 05:18:03 -0000 "Vicky" writes:

Hi,I had RAI 3 months ago and the last tsh had come up from 0.021 to 4.81The range on this lab is .500 to 5.700, so that is good. My ft4 is slight;y below normal now at .77 their range .90 to 1.90, it's looking like I am half there.I go for these same tests every 2 weeks now, this Thursday. Does anyone know how you start to feel when you actually becoming hypo instead hyper at this point? Has anyone who received RAI had any experiences with the going from one extreme to the other? How long did it take for you? Like i mentioned it has actually been over 3 months now so I am a bit anxious as my auto antibodies are still very high.He told me the would still be there but the thyroid would not function. Does anyone know if these anti bodies can attack somewhere else in your body? I have had autoimmune problems all my life but this was the worse thing I had so far. I guess I am afraid of some other immune problems. Any input would be greatly appreciated.Thanks,Vicky

[Guest guest]

Hi ,

Thank you for your advice, I didn't know there was a group for Graves Disease

and yes that is what I have. Oh boy. They are not testing my reflexes at all and

they are monitoring my pulse though. My Mom is hypo and takes synthroid so she

said she would help me out with anything she could to lessen my concerns.

I hope everything turns out as I have to go for more blood work in 2 days.

Their lab's reference range is different from others I have seen. The nurse

patiently took the time to go over the lab results with me and told me that

things were still considered in the normal range and that he is going to test my

thyroid levels until he thinks it time to give me hormone replacement as I am

not on anything. He asked me the last time I saw him which was about 10 days ago

if I was hurting anywhere yet? I thought, what in the world does he mean by

that?

I told him, no I didn't hurt anywhere. Now I am thinking I have that to look

forward to. I had lost at 5 " 8 " tall down to 82 pounds and am just now up to 96

pounds after 3 months post RAI, so I still have a long way to go to get my

weight back as I had become so thin that I really thought I was going to

literally die.

Thanks for your response, I have joined the Graves group too.

Vicky

>

> Hi, Vicky... have they started you on replacement hormone yet?

>

> You're already hypo... the current range for TSH is .3 to 3.0... you're

> well over that... and most folks feel best with a TSH under 1.0 once on

> replacement...

>

> More important is that your Free T4 is under range.. that means that you

> do not have enough thyroid hormone to be able to function properly and

> feel well.

>

> The doc might be waiting to see if there is any remaining gland function.

> They did that with me, too, I had RAI 15 years ago.... I was monitored

> every two weeks for the first six months after RAI, watching to see if

> the gland would rebound... When they were sure that it wouldn't, the

> started me on replacement hormone.

>

> If you had Grave's that caused your thyroid to go hyper... then yes, the

> antibodies can decide to attack else where... doesn't happen with

> everyone but the chance is there... the most common site of attack is the

> eyes...

>

> You can read up on that or check out the Grave's support group, to get

> more detailed info on what signs to watch for ..... It's called TED,

> Thyroid Eye Disease. If I remember the link correctly for the Grave's

> support group it's:

> http://health.groups.yahoo.com/group/Gravessupport/

>

> Have they been monitoring your pulse and reflexes? They did that knee

> bonk thing on me each time I came in... by the time they determined that

> my gland was shot it was taking a full ten seconds after they bonked my

> knee before my leg would kick... that's how slow my body, my reflexes

> were....

>

> Topper ()

>

> On Mon, 23 Jan 2006 05:18:03 -0000 " Vicky " Sound4Heaven@a... writes:

>

> Hi,

>

> I had RAI 3 months ago and the last tsh had come up from 0.021 to 4.81

> The range on this lab is .500 to 5.700, so that is good. My ft4 is

> slight;y below normal now at .77 their range .90 to 1.90, it's

> looking like I am half there.I go for these same tests every 2 weeks

> now, this Thursday.

>

> Does anyone know how you start to feel when you actually becoming

> hypo instead hyper at this point? Has anyone who received RAI had any

> experiences with the going from one extreme to the other? How long

> did it take for you? Like i mentioned it has actually been over 3

> months now so I am a bit anxious as my auto antibodies are still very

> high.

> He told me the would still be there but the thyroid would not

> function. Does anyone know if these anti bodies can attack somewhere

> else in your body? I have had autoimmune problems all my life but

> this was the worse thing I had so far. I guess I am afraid of some

> other immune problems. Any input would be greatly appreciated.

>

>

> Thanks,

>

>

> Vicky

>

[Guest guest]

Hi ,

Thank you for your advice, I didn't know there was a group for Graves Disease

and yes that is what I have. Oh boy. They are not testing my reflexes at all and

they are monitoring my pulse though. My Mom is hypo and takes synthroid so she

said she would help me out with anything she could to lessen my concerns.

I hope everything turns out as I have to go for more blood work in 2 days.

Their lab's reference range is different from others I have seen. The nurse

patiently took the time to go over the lab results with me and told me that

things were still considered in the normal range and that he is going to test my

thyroid levels until he thinks it time to give me hormone replacement as I am

not on anything. He asked me the last time I saw him which was about 10 days ago

if I was hurting anywhere yet? I thought, what in the world does he mean by

that?

I told him, no I didn't hurt anywhere. Now I am thinking I have that to look

forward to. I had lost at 5 " 8 " tall down to 82 pounds and am just now up to 96

pounds after 3 months post RAI, so I still have a long way to go to get my

weight back as I had become so thin that I really thought I was going to

literally die.

Thanks for your response, I have joined the Graves group too.

Vicky

>

> Hi, Vicky... have they started you on replacement hormone yet?

>

> You're already hypo... the current range for TSH is .3 to 3.0... you're

> well over that... and most folks feel best with a TSH under 1.0 once on

> replacement...

>

> More important is that your Free T4 is under range.. that means that you

> do not have enough thyroid hormone to be able to function properly and

> feel well.

>

> The doc might be waiting to see if there is any remaining gland function.

> They did that with me, too, I had RAI 15 years ago.... I was monitored

> every two weeks for the first six months after RAI, watching to see if

> the gland would rebound... When they were sure that it wouldn't, the

> started me on replacement hormone.

>

> If you had Grave's that caused your thyroid to go hyper... then yes, the

> antibodies can decide to attack else where... doesn't happen with

> everyone but the chance is there... the most common site of attack is the

> eyes...

>

> You can read up on that or check out the Grave's support group, to get

> more detailed info on what signs to watch for ..... It's called TED,

> Thyroid Eye Disease. If I remember the link correctly for the Grave's

> support group it's:

> http://health.groups.yahoo.com/group/Gravessupport/

>

> Have they been monitoring your pulse and reflexes? They did that knee

> bonk thing on me each time I came in... by the time they determined that

> my gland was shot it was taking a full ten seconds after they bonked my

> knee before my leg would kick... that's how slow my body, my reflexes

> were....

>

> Topper ()

>

> On Mon, 23 Jan 2006 05:18:03 -0000 " Vicky " Sound4Heaven@a... writes:

>

> Hi,

>

> I had RAI 3 months ago and the last tsh had come up from 0.021 to 4.81

> The range on this lab is .500 to 5.700, so that is good. My ft4 is

> slight;y below normal now at .77 their range .90 to 1.90, it's

> looking like I am half there.I go for these same tests every 2 weeks

> now, this Thursday.

>

> Does anyone know how you start to feel when you actually becoming

> hypo instead hyper at this point? Has anyone who received RAI had any

> experiences with the going from one extreme to the other? How long

> did it take for you? Like i mentioned it has actually been over 3

> months now so I am a bit anxious as my auto antibodies are still very

> high.

> He told me the would still be there but the thyroid would not

> function. Does anyone know if these anti bodies can attack somewhere

> else in your body? I have had autoimmune problems all my life but

> this was the worse thing I had so far. I guess I am afraid of some

> other immune problems. Any input would be greatly appreciated.

>

>

> Thanks,

>

>

> Vicky

>

[Guest guest]

It seems he's watching for gland activity.. that's good.. hard on you now, for sure.. but it the long run it will give you info that you will need.

Depending on how much hormone your gland was putting out, and how much was stored, it can take months for the excess that has been stored to be converted and used.

Pain.... it can happen.. for me it was a lot of muscle atrophy type pain, I was a body builder when I went into storm... so as I got more and more hypo and wasn't able to exercise anymore the muscles start wasting. I was also dealing with the pain involved as my body was cannibalizing... See my storm had me burning so many calories that I was barely able to eat enough... my fat was burned up first and then it went after muscle and organ tissue... that's that part that is pretty nasty... but it's a thing that happens when the body is in storm.

Assuming that the increasing hypo pain is gonna be similar to what I had.... My endo described it to me before it happened, so that I didn't freak out.

It's a cramp pain in the muscles... how many are affected at a time.... for me it was whole body.... the muscles and tissues are used to getting more oxygen, as the heart rate and metabolism continue to drop as you get more and more hypo the muscles and tissues feel starved for oxygen.. and cramp....

The best thing I found to do for this reaction is to just not move... don't pound it out.. don't walk it out or wiggle it out... it's not a case of increasing blood flow to get it to stop, that won't work, your body is slowing and it can't keep it up.... you have to lay still, let the cramping area be quiet until it can balance itself....

I had the extreme.... for me this whole body thing last for a good two years, most often in the morning when I first woke... every muscle in my body cramped and I couldn't move... it would lock up for up to 2 hours... if I forced myself to move before the muscles relaxed it started the cycle over again.... after that it was something that was triggered if I stretched.... for over a decade I couldn't stretch without triggering cramps.

Once I switched to natural... I could move again... I actually use stretching in my bedxercise routine.. and it feels WONDERFUL!

So... your's, I'm SURE, won't be any where near as bad as mine... you weren't hyper for as many years as me (over 20) or in full blow storm for as long as me (nearly a year)..... but I think understanding what it is makes it easier to handle...

Topper ()

On Tue, 24 Jan 2006 09:50:33 -0000 "Vicky" writes:

Hi ,Thank you for your advice, I didn't know there was a group for Graves Disease and yes that is what I have. Oh boy. They are not testing my reflexes at all and they are monitoring my pulse though. My Mom is hypo and takes synthroid so she said she would help me out with anything she could to lessen my concerns. I hope everything turns out as I have to go for more blood work in 2 days. Their lab's reference range is different from others I have seen. The nurse patiently took the time to go over the lab results with me and told me that things were still considered in the normal range and that he is going to test my thyroid levels until he thinks it time to give me hormone replacement as I am not on anything. He asked me the last time I saw him which was about 10 days ago if I was hurting anywhere yet? I thought, what in the world does he mean by that?I told him, no I didn't hurt anywhere. Now I am thinking I have that to look forward to. I had lost at 5"8" tall down to 82 pounds and am just now up to 96 pounds after 3 months post RAI, so I still have a long way to go to get my weight back as I had become so thin that I really thought I was going to literally die. Thanks for your response, I have joined the Graves group too. Vicky

[Guest guest]

It seems he's watching for gland activity.. that's good.. hard on you now, for sure.. but it the long run it will give you info that you will need.

Depending on how much hormone your gland was putting out, and how much was stored, it can take months for the excess that has been stored to be converted and used.

Pain.... it can happen.. for me it was a lot of muscle atrophy type pain, I was a body builder when I went into storm... so as I got more and more hypo and wasn't able to exercise anymore the muscles start wasting. I was also dealing with the pain involved as my body was cannibalizing... See my storm had me burning so many calories that I was barely able to eat enough... my fat was burned up first and then it went after muscle and organ tissue... that's that part that is pretty nasty... but it's a thing that happens when the body is in storm.

Assuming that the increasing hypo pain is gonna be similar to what I had.... My endo described it to me before it happened, so that I didn't freak out.

It's a cramp pain in the muscles... how many are affected at a time.... for me it was whole body.... the muscles and tissues are used to getting more oxygen, as the heart rate and metabolism continue to drop as you get more and more hypo the muscles and tissues feel starved for oxygen.. and cramp....

The best thing I found to do for this reaction is to just not move... don't pound it out.. don't walk it out or wiggle it out... it's not a case of increasing blood flow to get it to stop, that won't work, your body is slowing and it can't keep it up.... you have to lay still, let the cramping area be quiet until it can balance itself....

I had the extreme.... for me this whole body thing last for a good two years, most often in the morning when I first woke... every muscle in my body cramped and I couldn't move... it would lock up for up to 2 hours... if I forced myself to move before the muscles relaxed it started the cycle over again.... after that it was something that was triggered if I stretched.... for over a decade I couldn't stretch without triggering cramps.

Once I switched to natural... I could move again... I actually use stretching in my bedxercise routine.. and it feels WONDERFUL!

So... your's, I'm SURE, won't be any where near as bad as mine... you weren't hyper for as many years as me (over 20) or in full blow storm for as long as me (nearly a year)..... but I think understanding what it is makes it easier to handle...

Topper ()

On Tue, 24 Jan 2006 09:50:33 -0000 "Vicky" writes:

Hi ,Thank you for your advice, I didn't know there was a group for Graves Disease and yes that is what I have. Oh boy. They are not testing my reflexes at all and they are monitoring my pulse though. My Mom is hypo and takes synthroid so she said she would help me out with anything she could to lessen my concerns. I hope everything turns out as I have to go for more blood work in 2 days. Their lab's reference range is different from others I have seen. The nurse patiently took the time to go over the lab results with me and told me that things were still considered in the normal range and that he is going to test my thyroid levels until he thinks it time to give me hormone replacement as I am not on anything. He asked me the last time I saw him which was about 10 days ago if I was hurting anywhere yet? I thought, what in the world does he mean by that?I told him, no I didn't hurt anywhere. Now I am thinking I have that to look forward to. I had lost at 5"8" tall down to 82 pounds and am just now up to 96 pounds after 3 months post RAI, so I still have a long way to go to get my weight back as I had become so thin that I really thought I was going to literally die. Thanks for your response, I have joined the Graves group too. Vicky