Jump to content
RemedySpot.com

Re: Sudden T4 withdrawal

Rate this topic


Recommended Posts

Guest guest
Posted

Also have to add that - if it doesn't induce the rebound effect - you

won't notice an immediate change. Chuck, please correct me if I'm

wrong, but isn't there some residual T4 hanging around? So this

depletion may be more gradual and take upto 2 weeks.

At that time you will notice a difference in appetitie, temp, energy,

etc. And as your organs and tissues continue to waste from lack of

thyroid you will experience more symptoms - brian fog, bruising,

muscle atrophy, incontinenece, weight gain, memory problems, mood

swings, etc.

Sherry

>

> > Can you get depressed if you take yourself off 100mcg of

levoxyl? What is

> > the harm?

>

> You could eventually cause permanent damage to a variety of organs

> leading to death.

>

> Or, if your thyroid is still partially functioning, you could

induce a

> temporary " rebound " effect, which would cause you to briefly become

> hyperthyroid and could in turn induce cardiac arrest.

>

> This is not something to mess around with.

>

> Chuck

Guest guest
Posted

Sherry wrote:

> Also have to add that - if it doesn't induce the rebound effect - you

> won't notice an immediate change. Chuck, please correct me if I'm

> wrong, but isn't there some residual T4 hanging around? ...

Absolutely. With no thyroid function at all, you still have half the

starting level after about a week. One quarter after two weeks. However,

symptoms start as soon as the level is reduced, in less than one day.

The really dangerous stuff comes later. That was why I said " eventually "

it could cause permanent damage or death.

Chuck

Guest guest
Posted

takes months to get up but one day smacks it down? :( that sucks.. cuz i am

so forgetful.. i dont think ive not take it yet but i am so terribly scarily

forgetful

~~~~~~~~~~~~~~~~~~~~~

Interstitial-Cystitis

www.misskimberly.com

Re: Re: Sudden T4 withdrawal

> Sherry wrote:

>

> > Also have to add that - if it doesn't induce the rebound effect - you

> > won't notice an immediate change. Chuck, please correct me if I'm

> > wrong, but isn't there some residual T4 hanging around? ...

>

> Absolutely. With no thyroid function at all, you still have half the

> starting level after about a week. One quarter after two weeks. However,

> symptoms start as soon as the level is reduced, in less than one day.

> The really dangerous stuff comes later. That was why I said " eventually "

> it could cause permanent damage or death.

>

> Chuck

>

>

>

>

>

Guest guest
Posted

Girlie,

You wrote:

> takes months to get up but one day smacks it down? :( that sucks.. cuz i am

> so forgetful..

You are confusing two different processes. It takes months to gradually

get the dosage up to the proper level, because there is a risk of

overdosing while the concentration builds up. You don't lose all of that

in one day. Rather, you lose enough to drop out of the euthyroid range

of concentrations, which causes you noticeable symptoms, even though

there is a lot (89%) of the T4 concentration still there. If you start

taking the T4 again, you get back into the euthyroid range almost as

quickly.

The dangerous response only happens if you have most of the thyroid

still producing, which means you would be on a relatively low dose of T4

to begin with.

Chuck

Guest guest
Posted

I think that using a version of Chuck's analogy of the bucket (which was

very helpful, BTW - I never got a chance to say that during the whole

hoopla), it would be like a bucket with a hole in it, wouldn't it? She'd

get progressively worse, not all terrible on the first day she doesn't

take it - although she would already be worse than the day before, and

so on.

Jan

Sherry wrote:

>Also have to add that - if it doesn't induce the rebound effect - you

>won't notice an immediate change. Chuck, please correct me if I'm

>wrong, but isn't there some residual T4 hanging around? So this

>depletion may be more gradual and take upto 2 weeks.

>

>At that time you will notice a difference in appetitie, temp, energy,

>etc. And as your organs and tissues continue to waste from lack of

>thyroid you will experience more symptoms - brian fog, bruising,

>muscle atrophy, incontinenece, weight gain, memory problems, mood

>swings, etc.

>

>Sherry

>

>

>

Guest guest
Posted

The equilibrium at a lower point is the state most of us reach when

unmedicated, isn't it? Our bodies are literally in slow motion, slow

heart rate, low blood pressure, low temperature, almost like a

suspension state.

But if you removed 100% of a person's thyroid and gave them no meds they

would die - the question is, how long would it take? Could other tissues

be involved in converting T4 to T3 in the absence of the thyroid? Would

a person's stats affect how fast they would die (an older person with a

weaker heart dying faster than a younger person, for example)? I never

really did thyroid research past the myxedema state, I never even really

got to myxedema coma, musch less to the death part.

Jan

Chuck B wrote:

>Jan,

>

>You wrote:

>

>

>

>

>Yes, that's exactly how it would work.

>

>Someone with a partially functioning thyroid or too low a dose would

>cause the level in the bucket to reach equilibrium at a lower point.

>There would still be water in the bucket (still alive) but not enough to

>reach the euthyroid level.

>

>If NO water goes in, either from a small surviving piece of the gland or

>from supplementation, the bucket will eventually run dry. When that

>happens, cells throughout the body become unable to maintain cell

>metabolism and die.

>

>Chuck

>

>

>

Guest guest
Posted

First I want to see if I understand the original post - Are they

taking themselves off hormone replacement and wonder what the harm is?

I have been there - It is not fun. I saw Jan's post about myxedema

coma - My thyroid was so low that I was starting signs of

that " phase " . I had constant head pain (b/c of pituitary involvment)

for about a month. And because the pituitary was working overtime it

was effecting every hormone the pituitary controlls. So...I had

symptoms for everything at once - all the pituitary disorders. It

was like having alzheimer's disease. It has been a year on

replacement therapy and I still have symtoms. PLEASE stay on

something - if you don't like what your on change it but don't stop

completely. I am so worried about someone doing that. That could do

so much harm to you and your thyroid not to mention your lituitary

gland.

> >

> >

> >

> >

> >Yes, that's exactly how it would work.

> >

> >Someone with a partially functioning thyroid or too low a dose

would

> >cause the level in the bucket to reach equilibrium at a lower

point.

> >There would still be water in the bucket (still alive) but not

enough to

> >reach the euthyroid level.

> >

> >If NO water goes in, either from a small surviving piece of the

gland or

> >from supplementation, the bucket will eventually run dry. When

that

> >happens, cells throughout the body become unable to maintain cell

> >metabolism and die.

> >

> >Chuck

> >

> >

> >

Guest guest
Posted

Jan,

You wrote:

>

> ... But if you removed 100% of a person's thyroid and gave them no meds they

> would die - the question is, how long would it take? Could other tissues

> be involved in converting T4 to T3 in the absence of the thyroid? ...

Today this is probably one of those theoretical questions, such as the

untreated symptoms of scarlet fever, which are impossible to answer,

because no one allows scaret fever or myxedema coma to go untreated. As

I explained to Gracia, surgery, radio-iodine treatments, and other

radiation procedures are designed to be " subtotal, " to leave the patient

as close to euthyroid as possible. Complete thyroid removal or

destruction is rare, and when it happens, they step in immediately with

hormone replacement.

It did happen in the 1800's, though. The most dangerous post operative

complication was evidently myxedema coma, which frequently leads to

death, even with emergency treatment today.

Other tissues are indeed involved in T4 to T3 conversion; it is the lost

production of T4 itself that is critical. I would guess, based on the

half life numbers, that survival would be a matter of a few miserable

weeks at most. The little literature I could find on it in a short

search suggests that other complications are almost always what causes

the fatalities, again this is probably due to the " subtotal " nature of

most thyroid surgeries.

Chuck

Guest guest
Posted

, I also got to myxedema myself, although not to coma, and it is

really no fun.

I don't understand why someone would take themselves off meds

voluntarily, but there have been 3 people in the last month doing that

on the groups.

Jan

mwcislo wrote:

>First I want to see if I understand the original post - Are they

>taking themselves off hormone replacement and wonder what the harm is?

>I have been there - It is not fun. I saw Jan's post about myxedema

>coma - My thyroid was so low that I was starting signs of

>that " phase " . I had constant head pain (b/c of pituitary involvment)

>for about a month. And because the pituitary was working overtime it

>was effecting every hormone the pituitary controlls. So...I had

>symptoms for everything at once - all the pituitary disorders. It

>was like having alzheimer's disease. It has been a year on

>replacement therapy and I still have symtoms. PLEASE stay on

>something - if you don't like what your on change it but don't stop

>completely. I am so worried about someone doing that. That could do

>so much harm to you and your thyroid not to mention your lituitary

>gland.

>

>

>

>

>

>

>

Guest guest
Posted

I am sure there must be people still dying of myxedema coma, however I

am sure that if this is happening somewhere, it is because medical care

is ignorant about myxedema in the first place and the cause of death

would not be listed as myxedema coma. But yeah, it was theoretical.

A few weeks, then, it is.

Jan

Chuck B wrote:

>Jan,

>

>You wrote:

>

>

>

>>

>>... But if you removed 100% of a person's thyroid and gave them no meds they

>>would die - the question is, how long would it take? Could other tissues

>>be involved in converting T4 to T3 in the absence of the thyroid? ...

>>

>>

>

>Today this is probably one of those theoretical questions, such as the

>untreated symptoms of scarlet fever, which are impossible to answer,

>because no one allows scaret fever or myxedema coma to go untreated. As

>I explained to Gracia, surgery, radio-iodine treatments, and other

>radiation procedures are designed to be " subtotal, " to leave the patient

>as close to euthyroid as possible. Complete thyroid removal or

>destruction is rare, and when it happens, they step in immediately with

>hormone replacement.

>

>It did happen in the 1800's, though. The most dangerous post operative

>complication was evidently myxedema coma, which frequently leads to

>death, even with emergency treatment today.

>

>Other tissues are indeed involved in T4 to T3 conversion; it is the lost

>production of T4 itself that is critical. I would guess, based on the

>half life numbers, that survival would be a matter of a few miserable

>weeks at most. The little literature I could find on it in a short

>search suggests that other complications are almost always what causes

>the fatalities, again this is probably due to the " subtotal " nature of

>most thyroid surgeries.

>

>Chuck

>

>

>

>

Guest guest
Posted

I have just been talking to my sister, who has just had a thyroid

check, and we are waiting the results now. We have much the same

signs, my sister and I-- and it's her 18 year-old daughter who was

diagnosed with Grave's a year ago. My sister just asked me if I think

our Gran (our mother's mother) died of undiagnosed hypothyroidism. I

do think so, yes. I was at my Gran's bedside with my mother when Gran

died. I think now it was probably myxedema coma.

Gail

In hypothyroidism , Janaina Viggiano

<janaina@v...> wrote:

> I am sure there must be people still dying of myxedema coma,

however I

> am sure that if this is happening somewhere, it is because medical

care

> is ignorant about myxedema in the first place and the cause of

death

> would not be listed as myxedema coma. But yeah, it was theoretical.

>

> A few weeks, then, it is.

>

>

>

> Jan

>

> Chuck B wrote:

>

> >Jan,

> >

> >You wrote:

> >

> >

> >

> >>

> >>... But if you removed 100% of a person's thyroid and gave them

no meds they

> >>would die - the question is, how long would it take? Could other

tissues

> >>be involved in converting T4 to T3 in the absence of the

thyroid? ...

> >>

> >>

> >

> >Today this is probably one of those theoretical questions, such as

the

> >untreated symptoms of scarlet fever, which are impossible to

answer,

> >because no one allows scaret fever or myxedema coma to go

untreated. As

> >I explained to Gracia, surgery, radio-iodine treatments, and other

> >radiation procedures are designed to be " subtotal, " to leave the

patient

> >as close to euthyroid as possible. Complete thyroid removal or

> >destruction is rare, and when it happens, they step in immediately

with

> >hormone replacement.

> >

> >It did happen in the 1800's, though. The most dangerous post

operative

> >complication was evidently myxedema coma, which frequently leads

to

> >death, even with emergency treatment today.

> >

> >Other tissues are indeed involved in T4 to T3 conversion; it is

the lost

> >production of T4 itself that is critical. I would guess, based on

the

> >half life numbers, that survival would be a matter of a few

miserable

> >weeks at most. The little literature I could find on it in a short

> >search suggests that other complications are almost always what

causes

> >the fatalities, again this is probably due to the " subtotal "

nature of

> >most thyroid surgeries.

> >

> >Chuck

> >

> >

> >

> >

Guest guest
Posted

Jan,

You wrote:

> I am sure there must be people still dying of myxedema coma, however I

> am sure that if this is happening somewhere, it is because medical care

> is ignorant about myxedema in the first place and the cause of death

> would not be listed as myxedema coma. ...

Myxedema coma can happen from just a reduced supply of T4. Once things

get that bad, survival is much less likely. We were talking about the

even more severe case of total T4 removal.

Chuck

Guest guest
Posted

Jan, I take care of a mentally retarded adult who I am sure has congenital

hypothyoidism, BUT HE HAS NEVER BEEN TREATED FOR IT!!!! He has every

symptom. I wrote to his doctor about his hypothyroid/ hypoadrenal symptoms

(the guy wears a parka when it's 90 degrees out). She did a bogus cortisol

test and it actually came back too low, so the guy must have no adrenal

function at all. So YEAH I think people must be dying of myxadema coma all

over the place--hey I was almost one. But it would never be listed as cause

of death.

Gracia

> I am sure there must be people still dying of myxedema coma, however I

> am sure that if this is happening somewhere, it is because medical care

> is ignorant about myxedema in the first place and the cause of death

> would not be listed as myxedema coma. But yeah, it was theoretical.

>

> A few weeks, then, it is.

>

>

>

> Jan

>

> Chuck B wrote:

>

> >Jan,

> >

> >You wrote:

> >

> >

> >

> >>

> >>... But if you removed 100% of a person's thyroid and gave them no meds

they

> >>would die - the question is, how long would it take? Could other tissues

> >>be involved in converting T4 to T3 in the absence of the thyroid? ...

> >>

> >>

> >

> >Today this is probably one of those theoretical questions, such as the

> >untreated symptoms of scarlet fever, which are impossible to answer,

> >because no one allows scaret fever or myxedema coma to go untreated. As

> >I explained to Gracia, surgery, radio-iodine treatments, and other

> >radiation procedures are designed to be " subtotal, " to leave the patient

> >as close to euthyroid as possible. Complete thyroid removal or

> >destruction is rare, and when it happens, they step in immediately with

> >hormone replacement.

> >

> >It did happen in the 1800's, though. The most dangerous post operative

> >complication was evidently myxedema coma, which frequently leads to

> >death, even with emergency treatment today.

> >

> >Other tissues are indeed involved in T4 to T3 conversion; it is the lost

> >production of T4 itself that is critical. I would guess, based on the

> >half life numbers, that survival would be a matter of a few miserable

> >weeks at most. The little literature I could find on it in a short

> >search suggests that other complications are almost always what causes

> >the fatalities, again this is probably due to the " subtotal " nature of

> >most thyroid surgeries.

> >

> >Chuck

> >

> >

> >

> >

>

>

>

>

>

Guest guest
Posted

Though I dont know anything about myxadema and I dont claim to be a

doctor, I doubt that this adult you are talking about has congenital

hypothyroidism. If he did he would not have gotten to adulthood

untreated.

> > >

> > >

> > >

> > >>

> > >>... But if you removed 100% of a person's thyroid and gave them

no meds

> they

> > >>would die - the question is, how long would it take? Could

other tissues

> > >>be involved in converting T4 to T3 in the absence of the

thyroid? ...

> > >>

> > >>

> > >

> > >Today this is probably one of those theoretical questions, such

as the

> > >untreated symptoms of scarlet fever, which are impossible to

answer,

> > >because no one allows scaret fever or myxedema coma to go

untreated. As

> > >I explained to Gracia, surgery, radio-iodine treatments, and

other

> > >radiation procedures are designed to be " subtotal, " to leave the

patient

> > >as close to euthyroid as possible. Complete thyroid removal or

> > >destruction is rare, and when it happens, they step in

immediately with

> > >hormone replacement.

> > >

> > >It did happen in the 1800's, though. The most dangerous post

operative

> > >complication was evidently myxedema coma, which frequently leads

to

> > >death, even with emergency treatment today.

> > >

> > >Other tissues are indeed involved in T4 to T3 conversion; it is

the lost

> > >production of T4 itself that is critical. I would guess, based

on the

> > >half life numbers, that survival would be a matter of a few

miserable

> > >weeks at most. The little literature I could find on it in a

short

> > >search suggests that other complications are almost always what

causes

> > >the fatalities, again this is probably due to the " subtotal "

nature of

> > >most thyroid surgeries.

> > >

> > >Chuck

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

Guest guest
Posted

well if you do a search for congenital hypothyoidism, the guy has every

symptom listed, including hearing impairment and small stature. The list of

symptoms doesn't include death. These people are mentally retarded but it

is preventable.

GRacia

> Though I dont know anything about myxadema and I dont claim to be a

> doctor, I doubt that this adult you are talking about has congenital

> hypothyroidism. If he did he would not have gotten to adulthood

> untreated.

>

>

Guest guest
Posted

That goes to prove my theory. I am sorry for your Gran.

Jan

& Gail on wrote:

>I have just been talking to my sister, who has just had a thyroid

>check, and we are waiting the results now. We have much the same

>signs, my sister and I-- and it's her 18 year-old daughter who was

>diagnosed with Grave's a year ago. My sister just asked me if I think

>our Gran (our mother's mother) died of undiagnosed hypothyroidism. I

>do think so, yes. I was at my Gran's bedside with my mother when Gran

>died. I think now it was probably myxedema coma.

>Gail

>

>

>

Guest guest
Posted

I know, but with no thyroid you'd reach coma in a few weeks, with a

thyroid it would take years - however the end result of death by

myxedema coma would be the same.

I am sure there are no people dying with no hormones after surgery or

something similar, but there must be babies born with no thyroid still

dying out there, unfortunately.

Jan

Chuck B wrote:

>Jan,

>

>You wrote:

>

>

>

>>I am sure there must be people still dying of myxedema coma, however I

>>am sure that if this is happening somewhere, it is because medical care

>>is ignorant about myxedema in the first place and the cause of death

>>would not be listed as myxedema coma. ...

>>

>>

>

>Myxedema coma can happen from just a reduced supply of T4. Once things

>get that bad, survival is much less likely. We were talking about the

>even more severe case of total T4 removal.

>

>Chuck

>

>

>

Guest guest
Posted

Right, I am pretty sure a ton of old people who are listed as " heart

failure " are myxedema. My great-aunt has " the best care " available.

She's had 3 strokes and she is a diabetic - nothing to do with thyroid,

right? But let's look way back:

Her sister (my grandma) had hypothyroidism;

When she got to her 40s, she started losing hair, so much that she got

dermatological treatment, it was almost to the point of total baldness;

She had an early menopause - no treatment for that either;

When she got to her 40s, she got crazy too, like bipolar crazy. Wild

mood swings. Sound familiar?

Since I can remember (that was in her 50s already), she was always

slathering herself (face, hands, arms) with that thick Nivea lotion and

wearing a wool cardigan - all of which would be normal, if you don't

consider this is Brazil and it was around 90ºF most of the time she was

doing that;

She started having bad aphasia and other mental symptoms they said was

dementia, although she was in her 50s at the time. Her brother and

sister, close in age, were working. Heck, her *mother* was working, and

they tell this 50-something year-old woman she is demented from old age

like it is a normal thing.

It was after that she had the strokes. Now, tell me, is she dying of old

age or of untreated hypo? The only reason she is even alive is that her

daughter is well-off and has nurses 24/7. A poor person would have died

on the first stroke, still in her 50s, when it was all very preventable.

Even if she were to be dying now in her 70s, at least she'd have spent

the last 25 years with a decent quality of life.

Jan

Gracia wrote:

>Jan, I take care of a mentally retarded adult who I am sure has congenital

>hypothyoidism, BUT HE HAS NEVER BEEN TREATED FOR IT!!!! He has every

>symptom. I wrote to his doctor about his hypothyroid/ hypoadrenal symptoms

>(the guy wears a parka when it's 90 degrees out). She did a bogus cortisol

>test and it actually came back too low, so the guy must have no adrenal

>function at all. So YEAH I think people must be dying of myxadema coma all

>over the place--hey I was almost one. But it would never be listed as cause

>of death.

>Gracia

>

>

>

Guest guest
Posted

It is not impossible if his case is " mild " enough to keep him alive. His

pulse is in the 40s, Gracia mentioned that once - since when is that normal?

I agree that if he had, say, been born without a thyroid, he'd be dead.

But suppose he just has thyroid hormone resistance or something like

that, there is thyroid hormone, just not enough.

Jan

numere a una madrina wrote:

>Though I dont know anything about myxadema and I dont claim to be a

>doctor, I doubt that this adult you are talking about has congenital

>hypothyroidism. If he did he would not have gotten to adulthood

>untreated.

>

>

>

Guest guest
Posted

what's weird is that most of the retarded adults have some symptoms of

congenital hypothyroidism, like umbilical hernias, OCD, autism, and really

weird toe and fingernails (calcitonen?). Their nails have to be cut by a

podiatrist. So maybe parts of their thyroid glands are damaged or missing.

And guess what? The doctor is now " weaning him off " megace, an appetite

stimulant, b/c it suppresses adrenal function!! The guy has such dark

circles under his eyes.

Gracia

> It is not impossible if his case is " mild " enough to keep him alive. His

> pulse is in the 40s, Gracia mentioned that once - since when is that

normal?

>

> I agree that if he had, say, been born without a thyroid, he'd be dead.

> But suppose he just has thyroid hormone resistance or something like

> that, there is thyroid hormone, just not enough.

>

>

> Jan

>

> numere a una madrina wrote:

>

> >Though I dont know anything about myxadema and I dont claim to be a

> >doctor, I doubt that this adult you are talking about has congenital

> >hypothyroidism. If he did he would not have gotten to adulthood

> >untreated.

> >

> >

> >

>

>

>

>

>

  • 2 weeks later...
Posted

I didn't know about umbilical hernias being a symptom. I had terrible

ones as a baby and it got so bad a doc " reattached " my navel at 18. Then

when they removed my gallbladder, cutting on top of the navel, that

unattached it again and turned it into a huger hernia. I had to have

surgery for it, and they inserted Kevlar netting. Add that to the OCD

and dark circles and I am sure I had at least adrenal fatigue since birth.

Jan

Gracia wrote:

>what's weird is that most of the retarded adults have some symptoms of

>congenital hypothyroidism, like umbilical hernias, OCD, autism, and really

>weird toe and fingernails (calcitonen?). Their nails have to be cut by a

>podiatrist. So maybe parts of their thyroid glands are damaged or missing.

>And guess what? The doctor is now " weaning him off " megace, an appetite

>stimulant, b/c it suppresses adrenal function!! The guy has such dark

>circles under his eyes.

>Gracia

>

>

>

Posted

WOW. My son also had an umbilical hernia and heart valve defect. I have

actually used Armour to stop gall bladder attacks, don't know why it works

but it does. Gall bladder doesn't bother me at all now. I read that it is

very likely to have gall bladder removed in the year after hysterectomy!

This happened to my mother.

Gracia

> I didn't know about umbilical hernias being a symptom. I had terrible

> ones as a baby and it got so bad a doc " reattached " my navel at 18. Then

> when they removed my gallbladder, cutting on top of the navel, that

> unattached it again and turned it into a huger hernia. I had to have

> surgery for it, and they inserted Kevlar netting. Add that to the OCD

> and dark circles and I am sure I had at least adrenal fatigue since birth.

>

>

> Jan

>

> Gracia wrote:

>

> >what's weird is that most of the retarded adults have some symptoms of

> >congenital hypothyroidism, like umbilical hernias, OCD, autism, and

really

> >weird toe and fingernails (calcitonen?). Their nails have to be cut by

a

> >podiatrist. So maybe parts of their thyroid glands are damaged or

missing.

> >And guess what? The doctor is now " weaning him off " megace, an appetite

> >stimulant, b/c it suppresses adrenal function!! The guy has such dark

> >circles under his eyes.

> >Gracia

> >

> >

> >

>

>

>

>

>

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...