Re: LABS BACK/RAI BAIT - To Holly and all

[Guest guest]

It goes without saying that this is a very complicated disease.

There are no cookie-cutter answers with either the ATD dosing, or the

thyroid replacement hormone. We can get the one-size-fits-all

mentality from our doctors all day long. However, we ARE all

different: We have different genetic backgrounds, different medical

histories, different environmental influences, different stress

levels, and different dietary habits. Each one of us knows our

bodies better than anyone else, including our doctors.

I agree with you and Simon and Elaine that Alyssa's doctor may not be

unreasonable in suggesting that *a patient* drop the meds for 2 days

and then resume at half the dose of PTU. It may not be unreasonable

for SOME people, but many of us saw what happened the last time this

particular patient tried this.

Holly, you had a TSH of 37, and apparently the short-term withdrawal

of meds did you more good than harm. I'm sure there are plenty of

other reasons, besides a very high TSH, that a patient might be

advised to drop the meds cold turkey--myxedema coma comes to mind, or

a dangerously low FT4, or an intense allergic reaction, etc.

But other than situations such as these, the decision to play with

the meds this way needs thoughtful consideration--all labs must be

taken into account, all symptoms, and if available, patient history.

In Alyssa's case her TSH was recently at something like 9, and has

dropped to 5.98. Her Free T4 is at l.0, and what's so awful about

that? Considering the average lab range of 0.71 to 1.85 or so, this

is NOT exactly a cut and dried case of hypO. Her symptoms? I

understand that she wants to lose some weight, and that's

understandable, but is that enough to call for drastic measures?

Especially when in her individual case, doing this previously was

practically a disaster? Does she want to have repeat a performance?

I'm sure it was not pleasant for her the last time she tried this.

I'm no expert, but then who really is? We all have to experiment

with any of the thyroid-related meds to see what works best for us.

When the Free T4 is high, the TSH is low (usually) and when the FT4

starts dropping, it takes a while for the TSH to come back up

(usually).

If the FT4 is low, and the TSH is high, once the FT4 starts coming

back up, the TSH can lag in this situation also...... taking longer

for it to drop (usually). Why panic over it?

So when you consider that her FT4 is at 1.0, and her TSH has been

dropping nicely, quitting the meds for 2 days is unnecessary (in my

opinion), especially when the glaringly simple solution is to drop

the meds from 100 mg a day to 75 per day for a while, then drop to

50, after further testing.

She must consider that the last time she was told to drop the meds

for 3 days (not a whole lot of difference between 3 days then and 2

days now) her hyper symptoms skyrocketed. Not sure what her labs

did, but I have seen labs zoom practically overnight in some cases.

As far as dropping the PTU from 100 mg to 50 mg, I am certain there

are people who can do this quite easily, as there are those who can

drop from 10 mg a day of Tap or carbimazole, to 5 mg. There isn't a

whole lot of difference between managing PTU dosing and managing Tap

dosing, just a pill strength ratio of 10 to 1.

Personally, I've found it necessary to accomplish this by dropping

from 10 mg, to 9 mg, to 7.5 mg, to 6 mg, to 5 mg, and continue taking

EQUAL amounts 3 times a day (every 8 hours). Otherwise, my levels

will rebound. Of course, I UNDERSTAND that NOT everyone needs to be

this careful, but I have found that I DO.

Three years ago my FT4 was at .49 (range 0.71 to 1.85). I was told

to drop from 15 mg of Tap, to 10 mg, to 5 mg -- all inside a period

of 4 weeks. He had seen other patients pull this off without a

hitch, so he also figured I could as well. Even at that low of a

FT4, my doc had the sense to refrain from telling me to drop the meds

cold turkey.

This would be the approximate equivalence of going from 150 mg of PTU

to 50 mg of PTU, in 4 weeks. By week number 4, I was still doing

OK. Then overnight I went hyper, my heart went wild, and I ended up

in the hospital. Maybe the next person could have easily made this

rapid transition. But to play it safe, as you don't know for sure

how you personally will react, it is probably best to lower the meds

slowly, not irratically--such as dropping the meds cold turkey for a

few days, cutting a larger dose in half, taking alternating doses,

whatever. It's generally not a good idea to treat the thyroid like a

yo-yo!

Since Alyssa had already tried this and did not react well, I based

my reply on her history and her particular situation, which is

apparently more consideration than her doctor is giving this.

I saw her post over at mediboard yesterday, and remembered how she

feels about her doctor vs. internet advice. Her doctor has gone to

school for this so she must know something.... Alyssa has driven this

home to us before. I figured discretion was the better part of valor

and chose to bow out. Then she posts over here and specifically asks

me about this. I told her what I thought. I didn't tell her how to

split the 50 mg pill 3 ways, because in my humble opinion, I felt

that dropping to 75 mg at this point, without a 2 day withdrawal,

would be a better choice for *her*.

I didn't gather an opinion poll from this group before I expressed my

take on this, I just went with what I already knew about her case,

what I felt about her current situation, and let her know exactly how

I felt she SHOULD handle it, because she asked me!

When she came back and told me to calm down and she was going to

follow her doc's advice anyway, I decided that I'd had enough and

told her so. I also didn't get input from the other group members as

to whether I could speak my mind about this turn of events or not,

and didn't intend to.

If this had been a new person, and I had no idea of his or her

history, I would NOT have been so adamant about it. I would have

suggested that this method doesn't *usually* have good results, but

since we are all individuals, it would not be unreasonable to try it,

even though a 1.0 FT4 doesn't really call for it.

Two people I know who took PTU for a few years and then went into

remission, went to painstaking efforts to slowly taper the meds,

after discovering that quick withdrawal had a rebound effect which

had repeatedly put them back at square one.

Other people I know who have successfully eliminated Tap and gone

into remission did the same with it, very slowly reducing by shards.

I haven't gone into remission yet, possibly because I didn't have the

benefit of others' experiences to help guide me through the first 19

years. The newbies are very lucky to have something more than

clueless doctors and stale medical textbooks to rely upon for their

information. Others' experiences speak volumes!

So we are all entitled to our opinions. If people post here asking

for advice, they may get 20 different answers. They can take that,

and what their docs say, sift through it, and make their own

determination about what sounds best. I'm not arguing with that! I

gave my opinion based on what I know of Alyssa's case, and next time

I'll know better than to get involved with this one again.

Yes, Alyssa has made a chioce that feels right to HER. Of course,

she is entitled to make a decision based on what she feels is best

for HER. I apologize for trying to help her avoid making the same

mistake twice. What WAS I thinking?

-------------------------------

> It sounds to me like Alyssa has made a choice that feels right to

her. It's

> wrong of us to chastise her about it. We need to support her. I

agree with

> Simon, that what the doctor is suggesting is NOT completely

unreasonable,

> but I can also understand her and us hesitating about it because

her TSH is

> really not all that high. Sounds like she's listened to what we

have to

> say, and what her doctor has told her to do, and has made a

decision based

> on what she feels is best for her. Enough said.

>

> Holly

> Dx. 8/2001; 5 mg. MMI for last three months (and starting to get

muscle

> cramps again!)

>

>

[Guest guest]

It goes without saying that this is a very complicated disease.

There are no cookie-cutter answers with either the ATD dosing, or the

thyroid replacement hormone. We can get the one-size-fits-all

mentality from our doctors all day long. However, we ARE all

different: We have different genetic backgrounds, different medical

histories, different environmental influences, different stress

levels, and different dietary habits. Each one of us knows our

bodies better than anyone else, including our doctors.

I agree with you and Simon and Elaine that Alyssa's doctor may not be

unreasonable in suggesting that *a patient* drop the meds for 2 days

and then resume at half the dose of PTU. It may not be unreasonable

for SOME people, but many of us saw what happened the last time this

particular patient tried this.

Holly, you had a TSH of 37, and apparently the short-term withdrawal

of meds did you more good than harm. I'm sure there are plenty of

other reasons, besides a very high TSH, that a patient might be

advised to drop the meds cold turkey--myxedema coma comes to mind, or

a dangerously low FT4, or an intense allergic reaction, etc.

But other than situations such as these, the decision to play with

the meds this way needs thoughtful consideration--all labs must be

taken into account, all symptoms, and if available, patient history.

In Alyssa's case her TSH was recently at something like 9, and has

dropped to 5.98. Her Free T4 is at l.0, and what's so awful about

that? Considering the average lab range of 0.71 to 1.85 or so, this

is NOT exactly a cut and dried case of hypO. Her symptoms? I

understand that she wants to lose some weight, and that's

understandable, but is that enough to call for drastic measures?

Especially when in her individual case, doing this previously was

practically a disaster? Does she want to have repeat a performance?

I'm sure it was not pleasant for her the last time she tried this.

I'm no expert, but then who really is? We all have to experiment

with any of the thyroid-related meds to see what works best for us.

When the Free T4 is high, the TSH is low (usually) and when the FT4

starts dropping, it takes a while for the TSH to come back up

(usually).

If the FT4 is low, and the TSH is high, once the FT4 starts coming

back up, the TSH can lag in this situation also...... taking longer

for it to drop (usually). Why panic over it?

So when you consider that her FT4 is at 1.0, and her TSH has been

dropping nicely, quitting the meds for 2 days is unnecessary (in my

opinion), especially when the glaringly simple solution is to drop

the meds from 100 mg a day to 75 per day for a while, then drop to

50, after further testing.

She must consider that the last time she was told to drop the meds

for 3 days (not a whole lot of difference between 3 days then and 2

days now) her hyper symptoms skyrocketed. Not sure what her labs

did, but I have seen labs zoom practically overnight in some cases.

As far as dropping the PTU from 100 mg to 50 mg, I am certain there

are people who can do this quite easily, as there are those who can

drop from 10 mg a day of Tap or carbimazole, to 5 mg. There isn't a

whole lot of difference between managing PTU dosing and managing Tap

dosing, just a pill strength ratio of 10 to 1.

Personally, I've found it necessary to accomplish this by dropping

from 10 mg, to 9 mg, to 7.5 mg, to 6 mg, to 5 mg, and continue taking

EQUAL amounts 3 times a day (every 8 hours). Otherwise, my levels

will rebound. Of course, I UNDERSTAND that NOT everyone needs to be

this careful, but I have found that I DO.

Three years ago my FT4 was at .49 (range 0.71 to 1.85). I was told

to drop from 15 mg of Tap, to 10 mg, to 5 mg -- all inside a period

of 4 weeks. He had seen other patients pull this off without a

hitch, so he also figured I could as well. Even at that low of a

FT4, my doc had the sense to refrain from telling me to drop the meds

cold turkey.

This would be the approximate equivalence of going from 150 mg of PTU

to 50 mg of PTU, in 4 weeks. By week number 4, I was still doing

OK. Then overnight I went hyper, my heart went wild, and I ended up

in the hospital. Maybe the next person could have easily made this

rapid transition. But to play it safe, as you don't know for sure

how you personally will react, it is probably best to lower the meds

slowly, not irratically--such as dropping the meds cold turkey for a

few days, cutting a larger dose in half, taking alternating doses,

whatever. It's generally not a good idea to treat the thyroid like a

yo-yo!

Since Alyssa had already tried this and did not react well, I based

my reply on her history and her particular situation, which is

apparently more consideration than her doctor is giving this.

I saw her post over at mediboard yesterday, and remembered how she

feels about her doctor vs. internet advice. Her doctor has gone to

school for this so she must know something.... Alyssa has driven this

home to us before. I figured discretion was the better part of valor

and chose to bow out. Then she posts over here and specifically asks

me about this. I told her what I thought. I didn't tell her how to

split the 50 mg pill 3 ways, because in my humble opinion, I felt

that dropping to 75 mg at this point, without a 2 day withdrawal,

would be a better choice for *her*.

I didn't gather an opinion poll from this group before I expressed my

take on this, I just went with what I already knew about her case,

what I felt about her current situation, and let her know exactly how

I felt she SHOULD handle it, because she asked me!

When she came back and told me to calm down and she was going to

follow her doc's advice anyway, I decided that I'd had enough and

told her so. I also didn't get input from the other group members as

to whether I could speak my mind about this turn of events or not,

and didn't intend to.

If this had been a new person, and I had no idea of his or her

history, I would NOT have been so adamant about it. I would have

suggested that this method doesn't *usually* have good results, but

since we are all individuals, it would not be unreasonable to try it,

even though a 1.0 FT4 doesn't really call for it.

Two people I know who took PTU for a few years and then went into

remission, went to painstaking efforts to slowly taper the meds,

after discovering that quick withdrawal had a rebound effect which

had repeatedly put them back at square one.

Other people I know who have successfully eliminated Tap and gone

into remission did the same with it, very slowly reducing by shards.

I haven't gone into remission yet, possibly because I didn't have the

benefit of others' experiences to help guide me through the first 19

years. The newbies are very lucky to have something more than

clueless doctors and stale medical textbooks to rely upon for their

information. Others' experiences speak volumes!

So we are all entitled to our opinions. If people post here asking

for advice, they may get 20 different answers. They can take that,

and what their docs say, sift through it, and make their own

determination about what sounds best. I'm not arguing with that! I

gave my opinion based on what I know of Alyssa's case, and next time

I'll know better than to get involved with this one again.

Yes, Alyssa has made a chioce that feels right to HER. Of course,

she is entitled to make a decision based on what she feels is best

for HER. I apologize for trying to help her avoid making the same

mistake twice. What WAS I thinking?

-------------------------------

> It sounds to me like Alyssa has made a choice that feels right to

her. It's

> wrong of us to chastise her about it. We need to support her. I

agree with

> Simon, that what the doctor is suggesting is NOT completely

unreasonable,

> but I can also understand her and us hesitating about it because

her TSH is

> really not all that high. Sounds like she's listened to what we

have to

> say, and what her doctor has told her to do, and has made a

decision based

> on what she feels is best for her. Enough said.

>

> Holly

> Dx. 8/2001; 5 mg. MMI for last three months (and starting to get

muscle

> cramps again!)

>

>

[Guest guest]

Don't worry I think most of us remember the screaming,

swearing, out of control fits Alyssa had last time she dropped her

meds cold turkey, and how after she started her PTU again she said

she would never let them do this to her again... so it's only

reasonable that people would try to remind her of this when she

seemed to have forgotten about it already.

I hope it's different for her this time, and we shall find out soon

if it is or if it's the same old same old all over again.

Love Ya,

Pam B.

[Guest guest]

I am not trying intentionally to make the same mistake twice.

The situation is different this time and I appreciate your advise I

asked and you gave it to me. I thought you guys always told me I had

to take responsibility for my own health. I consider what you all

say I read everything then I have to decide what is best for me since

I live in my body.

I wish you wouldn't get so mad at me for making my own decision if

you don't want me to ask anything of you again I won't do that.

Sorry for the error of my ways

take care.

Oh I might be missing in action for a while we are having a bad snow

storm.

Alyssa

[Guest guest]

My post wasn't a personal attack on you, and I apologize if it made you feel

that way. I'm not sure the biting sarcasm in the last paragraph of this,

and in the post I responded to that you made to Alyssa are really necessary

in this forum. It doesn't help any of us feel better. She had already

gotten all kinds of advice and had made her decision, and I didn't think it

necessary to make her feel bad about it. After all, stress is what got most

of us here, and keeps us from getting better. The last thing we need to do

is raise someone's heart rate around here!

Also, I'm with you guys on the stupidendo thing, but I do think we do swing

too far to the side of " don't listen to your doctor " . That can be

dangerous, too.

Again, I'm sorry if I offended you. I was addressing us all as a cohesive

group, not singling you out. I have a great deal of respect for your

experience and knowledge. I try to stay out of things, but sometimes I just

can't. So while I'm at it, I'll go ahead and vent, then I'll be gone.

There have been several issues come up lately where I felt like the advice

given out, not just by you, but by others, has been so " you have to do this

or really bad things are going to happen " , when it's just not true. It

scares newcomers. It makes people think they HAVE to do something that

might not really be necessary for them. For example, the adamancy about

splitting doses. I can see where it helps some people to split their tap or

MMI, but nothing I've read says it's necessary, and I for one found that I

do better taking it all at night. If it works for you, great, but that

doesn't mean everyone has to do it. It's wrong to say that someone is not

going to heal if they don't split their PTU doses into three a day. I agree

and so does the medical community, that PTU needs to be taken every 12

hours, but to tell someone they won't heal if they don't take it every 8

hours is causing undo stress on some people. Look at all the frantic posts

where people are asking how to split these odd doses and people waking at 3

in the morning to take their third dose.....I'm sorry, that's not good for

anyone. It's never good to interrupt your sleep. You can't HEAL without

good sleep.

Sometimes obsessing about the disease we have just enables it to continue,

and I feel like sometimes this group, including me, enables other people to

obsess about this disease.

Take care,

Holly

Re: LABS BACK/RAI BAIT - To Holly and all

It goes without saying that this is a very complicated disease.

There are no cookie-cutter answers with either the ATD dosing, or the

thyroid replacement hormone. We can get the one-size-fits-all

mentality from our doctors all day long. However, we ARE all

different: We have different genetic backgrounds, different medical

histories, different environmental influences, different stress

levels, and different dietary habits. Each one of us knows our

bodies better than anyone else, including our doctors.

I agree with you and Simon and Elaine that Alyssa's doctor may not be

unreasonable in suggesting that *a patient* drop the meds for 2 days

and then resume at half the dose of PTU. It may not be unreasonable

for SOME people, but many of us saw what happened the last time this

particular patient tried this.

Holly, you had a TSH of 37, and apparently the short-term withdrawal

of meds did you more good than harm. I'm sure there are plenty of

other reasons, besides a very high TSH, that a patient might be

advised to drop the meds cold turkey--myxedema coma comes to mind, or

a dangerously low FT4, or an intense allergic reaction, etc.

But other than situations such as these, the decision to play with

the meds this way needs thoughtful consideration--all labs must be

taken into account, all symptoms, and if available, patient history.

In Alyssa's case her TSH was recently at something like 9, and has

dropped to 5.98. Her Free T4 is at l.0, and what's so awful about

that? Considering the average lab range of 0.71 to 1.85 or so, this

is NOT exactly a cut and dried case of hypO. Her symptoms? I

understand that she wants to lose some weight, and that's

understandable, but is that enough to call for drastic measures?

Especially when in her individual case, doing this previously was

practically a disaster? Does she want to have repeat a performance?

I'm sure it was not pleasant for her the last time she tried this.

I'm no expert, but then who really is? We all have to experiment

with any of the thyroid-related meds to see what works best for us.

When the Free T4 is high, the TSH is low (usually) and when the FT4

starts dropping, it takes a while for the TSH to come back up

(usually).

If the FT4 is low, and the TSH is high, once the FT4 starts coming

back up, the TSH can lag in this situation also...... taking longer

for it to drop (usually). Why panic over it?

So when you consider that her FT4 is at 1.0, and her TSH has been

dropping nicely, quitting the meds for 2 days is unnecessary (in my

opinion), especially when the glaringly simple solution is to drop

the meds from 100 mg a day to 75 per day for a while, then drop to

50, after further testing.

She must consider that the last time she was told to drop the meds

for 3 days (not a whole lot of difference between 3 days then and 2

days now) her hyper symptoms skyrocketed. Not sure what her labs

did, but I have seen labs zoom practically overnight in some cases.

As far as dropping the PTU from 100 mg to 50 mg, I am certain there

are people who can do this quite easily, as there are those who can

drop from 10 mg a day of Tap or carbimazole, to 5 mg. There isn't a

whole lot of difference between managing PTU dosing and managing Tap

dosing, just a pill strength ratio of 10 to 1.

Personally, I've found it necessary to accomplish this by dropping

from 10 mg, to 9 mg, to 7.5 mg, to 6 mg, to 5 mg, and continue taking

EQUAL amounts 3 times a day (every 8 hours). Otherwise, my levels

will rebound. Of course, I UNDERSTAND that NOT everyone needs to be

this careful, but I have found that I DO.

Three years ago my FT4 was at .49 (range 0.71 to 1.85). I was told

to drop from 15 mg of Tap, to 10 mg, to 5 mg -- all inside a period

of 4 weeks. He had seen other patients pull this off without a

hitch, so he also figured I could as well. Even at that low of a

FT4, my doc had the sense to refrain from telling me to drop the meds

cold turkey.

This would be the approximate equivalence of going from 150 mg of PTU

to 50 mg of PTU, in 4 weeks. By week number 4, I was still doing

OK. Then overnight I went hyper, my heart went wild, and I ended up

in the hospital. Maybe the next person could have easily made this

rapid transition. But to play it safe, as you don't know for sure

how you personally will react, it is probably best to lower the meds

slowly, not irratically--such as dropping the meds cold turkey for a

few days, cutting a larger dose in half, taking alternating doses,

whatever. It's generally not a good idea to treat the thyroid like a

yo-yo!

Since Alyssa had already tried this and did not react well, I based

my reply on her history and her particular situation, which is

apparently more consideration than her doctor is giving this.

I saw her post over at mediboard yesterday, and remembered how she

feels about her doctor vs. internet advice. Her doctor has gone to

school for this so she must know something.... Alyssa has driven this

home to us before. I figured discretion was the better part of valor

and chose to bow out. Then she posts over here and specifically asks

me about this. I told her what I thought. I didn't tell her how to

split the 50 mg pill 3 ways, because in my humble opinion, I felt

that dropping to 75 mg at this point, without a 2 day withdrawal,

would be a better choice for *her*.

I didn't gather an opinion poll from this group before I expressed my

take on this, I just went with what I already knew about her case,

what I felt about her current situation, and let her know exactly how

I felt she SHOULD handle it, because she asked me!

When she came back and told me to calm down and she was going to

follow her doc's advice anyway, I decided that I'd had enough and

told her so. I also didn't get input from the other group members as

to whether I could speak my mind about this turn of events or not,

and didn't intend to.

If this had been a new person, and I had no idea of his or her

history, I would NOT have been so adamant about it. I would have

suggested that this method doesn't *usually* have good results, but

since we are all individuals, it would not be unreasonable to try it,

even though a 1.0 FT4 doesn't really call for it.

Two people I know who took PTU for a few years and then went into

remission, went to painstaking efforts to slowly taper the meds,

after discovering that quick withdrawal had a rebound effect which

had repeatedly put them back at square one.

Other people I know who have successfully eliminated Tap and gone

into remission did the same with it, very slowly reducing by shards.

I haven't gone into remission yet, possibly because I didn't have the

benefit of others' experiences to help guide me through the first 19

years. The newbies are very lucky to have something more than

clueless doctors and stale medical textbooks to rely upon for their

information. Others' experiences speak volumes!

So we are all entitled to our opinions. If people post here asking

for advice, they may get 20 different answers. They can take that,

and what their docs say, sift through it, and make their own

determination about what sounds best. I'm not arguing with that! I

gave my opinion based on what I know of Alyssa's case, and next time

I'll know better than to get involved with this one again.

Yes, Alyssa has made a chioce that feels right to HER. Of course,

she is entitled to make a decision based on what she feels is best

for HER. I apologize for trying to help her avoid making the same

mistake twice. What WAS I thinking?

-------------------------------

> It sounds to me like Alyssa has made a choice that feels right to

her. It's

> wrong of us to chastise her about it. We need to support her. I

agree with

> Simon, that what the doctor is suggesting is NOT completely

unreasonable,

> but I can also understand her and us hesitating about it because

her TSH is

> really not all that high. Sounds like she's listened to what we

have to

> say, and what her doctor has told her to do, and has made a

decision based

> on what she feels is best for her. Enough said.

>

> Holly

> Dx. 8/2001; 5 mg. MMI for last three months (and starting to get

muscle

> cramps again!)

>

>

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[Guest guest]

Holly,

I have to agree with you here as well. I like getting advise but

your right my heart rate goes up when I start over freaking about

this disease when I read posts like Granny just posted to me. It

doesn't help to be told oh you have to listen to us or you are going

to die and never go into remission.

Don't get me wrong I'm truly grateful for the board but the things

you vented out here in your post have bothered me as well.

Thanks for posting and I will take care and I did always think I had

to take my doses 6 hours apart or suffer the consequences I never

heard of the 12 hours apart but hey if it works do it.

I think everyone's intentions are good but they do get carried away

sometimes with the picking on people and hassling them if they don't

do what the board says. After all this is just a board to vent

people here have lots of experience don't get me wrong but they are

not Endo's quite yet so we need to judge for ourselves what we should

do and I pay good money to my Endo to see to it that she takes care

of me and so far I'm A-OK and doing very very well.

I do consider everyone's advise before I make my own mind up and I do

have a mind of my own

Alyssa

[Guest guest]

Pam,

thanks for all your support here its so obvious you really care about

me

Alyssa