Re: Hyperthyroid treatment---links needed

[Guest guest]

I don't have links but there is a third method... it's a medication that

is given that slows the thyroid. If treatment is given soon enough the

thyroid can be slowed enough to be 'normal'. It was done to my half

sister but they slowed her too much and now she takes Synthroid, 75 mcg,

I think.....

It was briefly outlined to me but I way too hyper, in storm, and didn't

have the time to go through that type of treatment, my only option was

RAI (thanks to the jerk doc that ignored my symptoms and told me to go

home)

Topper ()

On Thu, 08 Jan 2004 03:59:03 -0000 " loboshe " writes:

> Has anybody found any info on treatment for hyper that does NOT

> include RAI or thyroid removal?? If so, send links.

>

> Janie

[Guest guest]

That has been explained to me... when in hyper phase, not due to meds,

it's a variable state, requiring frequent testing and medication

adjustment.... if the thyroid dies and you're not monitored you do a hard

swing the other way. The docs feel that its simpler just to get rid of

the offending thyroid, eliminating all fluctuations and giving meds

instead... part of this has to do with the brain washing that is involved

with $ynthroid.. that one pill in the morning will make you normal, as if

all is well with the world...

In some ways I think it's a bit easier to treat with no thyroid... but

not having anything there at all sure makes it tricky to figure out

dosing...... I think.... but finally, I've found what I need.... 5 doses

a day makes me feel great....

I would like to add, having survived both extremes, hyper and hypo.... I

think hyper is the far more dangerous... When in hyper storm, your body

starts eating itself if you are unable to feed it.... you can't sleep,

mentally... well.. you get weird.... you lose bone, muscle, damage body

organs, you become a walking 'heart attack any second'. Constant panic

attack and anxiety... and it's all happening fast, now, all the time....

When in hypo phase everything goes in slow motion... The anxiety and

panic attacks are a lot less intense. And sleep, I know that sleeping

your life a way is not fun.... but to go weeks with no sleep (I got so

bad that I stopped sleeping so that I could stay up to eat and was still

losing weight) it does something to your head... you have no escape from

what you are going through... EVERY thing is wrong and you live with it

and are fully aware of it 24 hours a day, no time to relax or heal or

even not think about it, even for a minute. And the hunger... Imagine

eating an entire strawberry cheese cake, in the car in the parking lot of

Baker's Square.... then going back in for another one because you are

still hungry. Frying up a pound of sausage links an stacking them between

two slices of bread, eating that while frying up a second pound, eating

that... then getting dressed and going out to a buffet to eat because you

are still hungry.

A bucket of chicken and a 2 layer cake while contemplating where you can

go to eat.

24 Snickers bars eaten in an hour and a half, then going to 's for 2

Triple bacon cheese burgers, 2 fries and a jumbo drink..

Having the manager at Country Buffet cringe when you come in for your

three trays full of food.

Ditto for the manager at Godfather's pizza for the all you can eat

lunch... I was there when the time period started and ate until it

ended.... averaged 3 large pizzas and 2 dessert pizzas most days, plus

soda.

Don't EVER want to go there again! This recent hyper phase was nothing

compared to that.. but it sure brought back the terror.. that's the only

word that fits... because you can eat enough to feed a dozen men and

still feel starved and starving and seeking more food.

Stopping now... I get carried away... that was the longest, most

horrifying time of my life.. that two years that I was in storm.. the 10

months after that doc said there was nothing wrong with me.....

Topper ()

On Thu, 08 Jan 2004 06:08:49 -0000 " loboshe " writes:

> You know the phrase " opposite sides of the same coin " ?? It always

> strikes me about the thyroid and hypo vs. hyper. Couldn't they be

> just opposite expressions of the same thing? And if so, why does one

> get treatment with meds (like with Armour) yet the other gets

> treatment that is drastic?? Seems wrong, wrong.

>

> Janie

[Guest guest]

That has been explained to me... when in hyper phase, not due to meds,

it's a variable state, requiring frequent testing and medication

adjustment.... if the thyroid dies and you're not monitored you do a hard

swing the other way. The docs feel that its simpler just to get rid of

the offending thyroid, eliminating all fluctuations and giving meds

instead... part of this has to do with the brain washing that is involved

with $ynthroid.. that one pill in the morning will make you normal, as if

all is well with the world...

In some ways I think it's a bit easier to treat with no thyroid... but

not having anything there at all sure makes it tricky to figure out

dosing...... I think.... but finally, I've found what I need.... 5 doses

a day makes me feel great....

I would like to add, having survived both extremes, hyper and hypo.... I

think hyper is the far more dangerous... When in hyper storm, your body

starts eating itself if you are unable to feed it.... you can't sleep,

mentally... well.. you get weird.... you lose bone, muscle, damage body

organs, you become a walking 'heart attack any second'. Constant panic

attack and anxiety... and it's all happening fast, now, all the time....

When in hypo phase everything goes in slow motion... The anxiety and

panic attacks are a lot less intense. And sleep, I know that sleeping

your life a way is not fun.... but to go weeks with no sleep (I got so

bad that I stopped sleeping so that I could stay up to eat and was still

losing weight) it does something to your head... you have no escape from

what you are going through... EVERY thing is wrong and you live with it

and are fully aware of it 24 hours a day, no time to relax or heal or

even not think about it, even for a minute. And the hunger... Imagine

eating an entire strawberry cheese cake, in the car in the parking lot of

Baker's Square.... then going back in for another one because you are

still hungry. Frying up a pound of sausage links an stacking them between

two slices of bread, eating that while frying up a second pound, eating

that... then getting dressed and going out to a buffet to eat because you

are still hungry.

A bucket of chicken and a 2 layer cake while contemplating where you can

go to eat.

24 Snickers bars eaten in an hour and a half, then going to 's for 2

Triple bacon cheese burgers, 2 fries and a jumbo drink..

Having the manager at Country Buffet cringe when you come in for your

three trays full of food.

Ditto for the manager at Godfather's pizza for the all you can eat

lunch... I was there when the time period started and ate until it

ended.... averaged 3 large pizzas and 2 dessert pizzas most days, plus

soda.

Don't EVER want to go there again! This recent hyper phase was nothing

compared to that.. but it sure brought back the terror.. that's the only

word that fits... because you can eat enough to feed a dozen men and

still feel starved and starving and seeking more food.

Stopping now... I get carried away... that was the longest, most

horrifying time of my life.. that two years that I was in storm.. the 10

months after that doc said there was nothing wrong with me.....

Topper ()

On Thu, 08 Jan 2004 06:08:49 -0000 " loboshe " writes:

> You know the phrase " opposite sides of the same coin " ?? It always

> strikes me about the thyroid and hypo vs. hyper. Couldn't they be

> just opposite expressions of the same thing? And if so, why does one

> get treatment with meds (like with Armour) yet the other gets

> treatment that is drastic?? Seems wrong, wrong.

>

> Janie

[Guest guest]

Sometimes I'm afraid to find out if there is another solution, for folks

in my circumstance. I found out a few weeks ago that I have a genetic

defect that causes the thyroid to have defective TSH receptors... so the

thyroid doesn't get the instruction from the pituitary.. it just plugs

along as it wills... over time it just continues to speed up and speed

up... until thyroid storm...

I have a full brother that was actually tested for that genetic defect

and found to have it. That was when they were trying to determine if he

had rheumatoid arthritis or Raynaud's syndrome... yet no one told me that

the defect ran in family's and that I might very well have it too... We

have two half sibs that also went hyper in much the same way that I

did... so it's definitely something that runs in families, all four of

us, plus a fifth, diagnosed with bi-polar disorder... all have a common

parent.

So, in my case. When my full brother was tested it should have been

explained to him what that defect was and that I should also be made

aware of it.. I would have known what to say to that doc and I could have

told him what to do when he gave me that 'too fat to be sick line'. We

didn't meet our half sibs until '99. We'd all gone through either obvious

hyper, or hyper storm, by our late 30's... but since we were not aware of

each other there was no way for the first to tell the rest of us. We were

born in Germany and got split up because of all the crap that was

happening there in the '50s.

If this defect exists.. and was being looked for 15 years ago, gosh..

closer to 20 years ago, when my brother was tested... why are not more of

the folks that are hyper.. or even hypo from burned out thyroids, being

tested for this?

I've heard it many times. That thyroid disorder is considered a bread and

butter disease.. the patient comes in once a year for lab work or they

get no meds... if you short dose them you can get them to come in more

often for more office and lab fees.. underdosing them makes them feel

like crap and become dependant on the doctor... and it takes years and

years of misery and torture before they die... and by that time they are

so sick and run down and brain fogged with family that is sick and tired

of dealing with it that the doctors are never made to answer for their

shitty treatment.

If I had a genie's lamp and could make a wish (assuming that I could not

just wish thyroid disease away altogether) I'd wish for the opportunity

to go with folks to their docs and get nose to nose with them (I'm 5'10

and at my best was 277 pounds of solid muscle) and in a nice, calm voice

ask that doc explain to me why he's not taking proper lab tests, why he's

not asking about and taking into consideration the symptoms and comments

that the patient is making and why they feel that a synthetic T4 only med

is preferable to a natural medication that provides all the same

components that our healthy thyroids used to make.

If he started to lip off I'd ask him to recite the Hippocratic oath, ask

him why he chose to be a doctor and take an oath that he is not honoring

and then explain to him/her why I believe they are a miserable, worthless

piece of shit and that we (me and the patient I've come in with) will be

going to find a real doctor while making sure what a joke he/she is is

know to all!

Okay... calming down now.... I think.. whew.. yeah... deep breaths...

relax... yeah... I'm okay... I'm setting down the crutch.... I'm not

going to beat the monitor... the monitor is not the doctor that maimed

me.... inhale, one, two, three... exhale, one, two, three.... okay...

calm... yep.. fine now.... checking the keyboard for damage... no.. it's

fine... no broken keys... close one....

Topper ()

On Thu, 08 Jan 2004 16:04:14 -0000 " loboshe " writes:

> >>The docs feel that its simpler just to get rid of the offending

> >>thyroid, eliminating all fluctuations and giving meds instead...

>

> Exactly, and that is what I am afraid of. That thousands upon

> thousands of folks (including my own mother in her 20's during the

> early 1940's) are losing their thyroids because it's the " easiest "

> thing to do. Surely, just as Armour is a MUCH better treatment for

> hypo, there IS a better treatment for hyper. Where is it? Who is

> the maverick out there who is doing it, or proposing it??

>

> Janie