Jump to content
RemedySpot.com

Re: topper - another rant

Rate this topic


Guest guest

Recommended Posts

Guest guest

Hashi's is an autoimmune disease.. the body sees the thyroid as an invader and produces antibodies to destroy it.. as the antibody levels fluctuate so does the production of the thyroid. You swing back and forth between hyper and hyper.. for some people that can be a matter of weeks between swings, for others its years.

Now what comes into play with the meds is that if the dose is not correct you can partially suppress the existing out put of the gland but without enough supplemental hormone you'll be hypo... but the gland is still in flux and you can still swing back and forth between hyper and hypo... until the gland eventually burns out...

If you get enough hormone to totally suppress the gland. The likely hood of continuing to swing back and forth (between hyper and hypo is GREATLY reduced).

With Hashi's you have to be aware of how you are doing and be very careful with your meds.. if you are seeing that you are swinging hyper, you back off on your meds... if you are swinging hypo you increase your meds... but even that doesn't work until you reach some type of a balance on the meds to be able to notice a change... that's why many docs feel that it's too complicated and expensive to mess with all the testing and hassle of adjusting doses so they just say to remove the gland or kill it off with RAI.

In my case, when I went into thyroid storm it was determined that I did not have Hashi's or Graves... I had a genetic defect in my TSH receptors. So, in my case my gland had no instruction at all on how much hormone to put out it just starting up at it's own level and as years passes kept putting out more and more cause there was nothing to tell it to slow down. Eventually I went into storm. So for me the only thing to do was to kill off the gland. If any had been left behind from surgery I would have continued to be at risk to go into storm again... or to go into severe hypo if it decided to cut back on production.

For someone with Grave's, if their doc decides to remove the gland or destroys it they are at risk for complications resulting from the antibodies attacking something else in the body, often it's the eyes.....

So it does make a difference in how a doc should proceed with treatment and what you need to learn about monitoring your own symptoms.

I think back to all the years that I was just going in to have my tires topped off... no one really caring how I was feeling, that I was continuing to gain weight, the I started having trouble with my feet... even ending up on crutches.... That doc even told me that I had PF (plantaar faciitis) and told me that it was because I was fat and that I'd have it for life. He never consulted the other doc that I was seeing for my thyroid to check how my labs were looking even though PF is a COMMON symptom with long term hypo. He gave me a little plastic heal cup to put in my shoe and told me to stay off my feet for two weeks.. Oh, and how to exercise to ease the strain on the damaged tendon....

All from improper testing, underdosing and lack of care....

I know.. I'm getting off the original point... but we all have to realize that we can't take everything at first glance. The thyroid controls so much of our physical and emotional selves that we have to be aware of the impact it has and not just lay back and 'deal with it' thinking that since we have been put on a med and the doc says we're fine now and it's 'all in our heads' that we have to deal with the pain and grief and suffering that comes with inadequate care and treatment.

All the crud that I'm going through now is a result of lack of proper medical care that I received from all the doctors I saw for all those years... Not just one or two.. I'm talking a dozen or more, I've lost track... and I was such a doc worshipper I didn't question... I just dealt with it.....

.... I lost my house...

.... I lost my car...

.... I lost my driver's license...

.... I ended up on crutches...

I'm off crutches now.. but the rest.. that's gonna be a lot harder to get back.

Oh geez... I just get so steamed...

Protect your health, the quality of your life... don't just accept!

I'm stopping now... sorry gang.

Topper ()

www.thyrophoenix.com

On Wed, 7 Jul 2004 00:50:19 -0500 (Central Standard Time) "" writes:

hey topper - i get what you are saying and yes i'm glad somebody did the antibody test on me just because i'm one of these ppl that are inquisitive - not sure if its b/c i'm a nurse or what but on the other hand what good is it really going to do me to know its hashi's - just means something caused that and i'll probably never know if it was a virus or whatever and basically the treatment is the same from what i understand - i'll see what my new endo says on the 14th. so essentially to me our medication be it armour or synthroid is like the air in our tires - we don't keep it in then we go flat (literally). i would love it if thyroid problems had a simple cause that we could find and either stop doing it or have a procedure tto CURE it....but i don't think there is......i say think b/c i'll never claim to be a know it all and who knows.....with new technology perhaps they will find a cure. unfortunately there are medical mysteries that we will probably never find out about. and for me perssonaally i love to be able to treat symptoms with medication as opposed to being miserable - maybe thats the nurse in me too - who knows.....but i'm not choosing to treat symptoms as opposed to finding the cure....if they develop a cure i'll be the first one in line but i'm also not one to jump on a lot of homeopathic remedies (my choice and i don't knock ppl who do). i just find i don't know enough about it and not sure how to learn about it legitimately b/c there is no FDA to monitor the natural endd of things. i can't tell the difference between hype or hope and just don't want to bog my life down weeding my way through it - i'm so far down at the end of my rope now i'm doing good just to get dressed in the morning. so until they figure out a way to fix my fflat tire i'll just keep feeding it medication and keep rolling on down the road.

happy rolling you guys !!!!

visit our website

www.geocities.com/tanyarn96/countryside.html

www.poncetihomes.com

Link to comment
Share on other sites

Guest guest

My feet were the worst thing about this in the beginning. I simply

could not bear to take even a few steps at my worst. Weird

symptom. Of course, my brilliant doctors just kept telling me it

was my arthritis. I kept telling them this is NOT my normal

arthritis. Having RA has really, really complicated things for me.

They are so quick to just blame all of my symptoms on it.

Jo

> Hashi's is an autoimmune disease.. the body sees the thyroid as an

> invader and produces antibodies to destroy it.. as the antibody

levels

> fluctuate so does the production of the thyroid. You swing back

and forth

> between hyper and hyper.. for some people that can be a matter of

weeks

> between swings, for others its years.

>

> Now what comes into play with the meds is that if the dose is not

correct

> you can partially suppress the existing out put of the gland but

without

> enough supplemental hormone you'll be hypo... but the gland is

still in

> flux and you can still swing back and forth between hyper and

hypo...

> until the gland eventually burns out...

>

> If you get enough hormone to totally suppress the gland. The

likely hood

> of continuing to swing back and forth (between hyper and hypo is

GREATLY

> reduced).

>

> With Hashi's you have to be aware of how you are doing and be very

> careful with your meds.. if you are seeing that you are swinging

hyper,

> you back off on your meds... if you are swinging hypo you increase

your

> meds... but even that doesn't work until you reach some type of a

balance

> on the meds to be able to notice a change... that's why many docs

feel

> that it's too complicated and expensive to mess with all the

testing and

> hassle of adjusting doses so they just say to remove the gland or

kill it

> off with RAI.

>

> In my case, when I went into thyroid storm it was determined that

I did

> not have Hashi's or Graves... I had a genetic defect in my TSH

receptors.

> So, in my case my gland had no instruction at all on how much

hormone to

> put out it just starting up at it's own level and as years passes

kept

> putting out more and more cause there was nothing to tell it to

slow

> down. Eventually I went into storm. So for me the only thing to do

was to

> kill off the gland. If any had been left behind from surgery I

would have

> continued to be at risk to go into storm again... or to go into

severe

> hypo if it decided to cut back on production.

>

> For someone with Grave's, if their doc decides to remove the gland

or

> destroys it they are at risk for complications resulting from the

> antibodies attacking something else in the body, often it's the

eyes.....

>

>

> So it does make a difference in how a doc should proceed with

treatment

> and what you need to learn about monitoring your own symptoms.

>

> I think back to all the years that I was just going in to have my

tires

> topped off... no one really caring how I was feeling, that I was

> continuing to gain weight, the I started having trouble with my

feet...

> even ending up on crutches.... That doc even told me that I had PF

> (plantaar faciitis) and told me that it was because I was fat and

that

> I'd have it for life. He never consulted the other doc that I was

seeing

> for my thyroid to check how my labs were looking even though PF is

a

> COMMON symptom with long term hypo. He gave me a little plastic

heal cup

> to put in my shoe and told me to stay off my feet for two weeks..

Oh, and

> how to exercise to ease the strain on the damaged tendon....

>

> All from improper testing, underdosing and lack of care....

>

> I know.. I'm getting off the original point... but we all have to

realize

> that we can't take everything at first glance. The thyroid

controls so

> much of our physical and emotional selves that we have to be aware

of the

> impact it has and not just lay back and 'deal with it' thinking

that

> since we have been put on a med and the doc says we're fine now

and it's

> 'all in our heads' that we have to deal with the pain and grief and

> suffering that comes with inadequate care and treatment.

>

> All the crud that I'm going through now is a result of lack of

proper

> medical care that I received from all the doctors I saw for all

those

> years... Not just one or two.. I'm talking a dozen or more, I've

lost

> track... and I was such a doc worshipper I didn't question... I

just

> dealt with it.....

>

> ... I lost my house...

> ... I lost my car...

> ... I lost my driver's license...

> ... I ended up on crutches...

>

> I'm off crutches now.. but the rest.. that's gonna be a lot harder

to get

> back.

>

> Oh geez... I just get so steamed...

>

> Protect your health, the quality of your life... don't just accept!

>

> I'm stopping now... sorry gang.

>

> Topper ()

> www.thyrophoenix.com

>

>

> On Wed, 7 Jul 2004 00:50:19 -0500 (Central Standard Time) " "

> <coprhed@c...> writes:

> hey topper - i get what you are saying and yes i'm glad somebody

did the

> antibody test on me just because i'm one of these ppl that are

> inquisitive - not sure if its b/c i'm a nurse or what but on the

other

> hand what good is it really going to do me to know its hashi's -

just

> means something caused that and i'll probably never know if it was

a

> virus or whatever and basically the treatment is the same from

what i

> understand - i'll see what my new endo says on the 14th. so

essentially

> to me our medication be it armour or synthroid is like the air in

our

> tires - we don't keep it in then we go flat (literally). i would

love it

> if thyroid problems had a simple cause that we could find and

either stop

> doing it or have a procedure tto CURE it....but i don't think there

> is......i say think b/c i'll never claim to be a know it all and

who

> knows.....with new technology perhaps they will find a cure.

> unfortunately there are medical mysteries that we will probably

never

> find out about. and for me perssonaally i love to be able to treat

> symptoms with medication as opposed to being miserable - maybe

thats the

> nurse in me too - who knows.....but i'm not choosing to treat

symptoms as

> opposed to finding the cure....if they develop a cure i'll be the

first

> one in line but i'm also not one to jump on a lot of homeopathic

remedies

> (my choice and i don't knock ppl who do). i just find i don't know

enough

> about it and not sure how to learn about it legitimately b/c there

is no

> FDA to monitor the natural endd of things. i can't tell the

difference

> between hype or hope and just don't want to bog my life down

weeding my

> way through it - i'm so far down at the end of my rope now i'm

doing good

> just to get dressed in the morning. so until they figure out a way

to fix

> my fflat tire i'll just keep feeding it medication and keep

rolling on

> down the road.

> happy rolling you guys !!!!

>

>

> visit our website

> www.geocities.com/tanyarn96/countryside.html

> www.poncetihomes.com

Link to comment
Share on other sites

Guest guest

Did you end up with PF too? I was thrilled when I heard that it was a

thyroid symptom and wasn't a permanent condition as it is when it's an

injury (usually athlete's and sometimes heavy folks). The doc kept asking

me if I remember hearing it crack,that it's loud enough to hear, I kept

telling him NO... that was the clue that it was thyroid related and not

physical injury.. yet the dork didn't know that....

Topper ()

On Wed, 07 Jul 2004 23:19:49 -0000 " jookeefe_1960 "

writes:

> My feet were the worst thing about this in the beginning. I simply

> could not bear to take even a few steps at my worst. Weird

> symptom. Of course, my brilliant doctors just kept telling me it

> was my arthritis. I kept telling them this is NOT my normal

> arthritis. Having RA has really, really complicated things for me.

>

> They are so quick to just blame all of my symptoms on it.

>

> Jo

Link to comment
Share on other sites

Guest guest

Well, like I said, my doctors all said it was just my arthritis, but

the foot pain was excruciating -- unlike anything I've ever

experienced before with my arthritis! My ankles crack and pop very

loudly all the time (drives my boss CRAZY), so I don't know about

any sounds related to that, but it was terrible. Whenever I'm

having a flare, they start up again, too, but never as bad as before

I started on the Synthroid. I hope it never gets that bad again.

At least next time I would know what it was. Initially the doctors

thought I had cancer or something, and I thought, like you, that I

would never walk again. I do have to use a cane a good deal of the

time for my arthritis, but the pain with the arthritis is bearable.

The pain from that is not!!

Jo

> Did you end up with PF too? I was thrilled when I heard that it

was a

> thyroid symptom and wasn't a permanent condition as it is when

it's an

> injury (usually athlete's and sometimes heavy folks). The doc kept

asking

> me if I remember hearing it crack,that it's loud enough to hear, I

kept

> telling him NO... that was the clue that it was thyroid related

and not

> physical injury.. yet the dork didn't know that....

>

> Topper ()

>

> On Wed, 07 Jul 2004 23:19:49 -0000 " jookeefe_1960 "

> <jookeefe_1960@y...> writes:

> > My feet were the worst thing about this in the beginning. I

simply

> > could not bear to take even a few steps at my worst. Weird

> > symptom. Of course, my brilliant doctors just kept telling me

it

> > was my arthritis. I kept telling them this is NOT my normal

> > arthritis. Having RA has really, really complicated things for

me.

> >

> > They are so quick to just blame all of my symptoms on it.

> >

> > Jo

Link to comment
Share on other sites

Guest guest

In plantar fasciitis, the arch gradually stretches out, due to the

connective tissues being weak because of thyroid hormone issues. Since it

runs all the body functions, right down to the way our connective tissues

and muscles are linked together, it is no surprise that this would

eventually happen. I think for those of us who have had these types of

issues, it's probably the length of time we've had the disease, some in low

key, others high key, as in your case. Yes, I was doing a lot of walking

when mine collapsed in one day, but a lot of people do a lot of walking, and

this never happens to them. It's the thyroid disease doing it. The bone

spurs come from the bones on the feet striking the ground in places they

should never be striking in a lifetime, especially on the curved under

portion of the front of the heels. We weren't meant to wak on the bones of

our feet. When we do this for awhile, a bony spur is going to form. Mine

went away, even with the T4 treatment that I got, after a couple of yrs on

that. The trouble with the connective tissues there though, is that this

fascia (sp?) may not go magically back into place ever again, once it's

stretched out. I am only approximately 20 lbs overweight, so that's not an

issue. It just can't shrink back up and reshape itself like it formerly

was. Maybe if they did a surgery on it, but I can't afford that one.

Re: Re: topper - another rant

> Did you end up with PF too? I was thrilled when I heard that it was a

> thyroid symptom and wasn't a permanent condition as it is when it's an

> injury (usually athlete's and sometimes heavy folks). The doc kept asking

> me if I remember hearing it crack,that it's loud enough to hear, I kept

> telling him NO... that was the clue that it was thyroid related and not

> physical injury.. yet the dork didn't know that....

>

> Topper ()

>

> On Wed, 07 Jul 2004 23:19:49 -0000 " jookeefe_1960 "

> writes:

> > My feet were the worst thing about this in the beginning. I simply

> > could not bear to take even a few steps at my worst. Weird

> > symptom. Of course, my brilliant doctors just kept telling me it

> > was my arthritis. I kept telling them this is NOT my normal

> > arthritis. Having RA has really, really complicated things for me.

> >

> > They are so quick to just blame all of my symptoms on it.

> >

> > Jo

Link to comment
Share on other sites

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...