Re: Hello All - very hypo after RAI

[Guest guest]

Hi Joanne,

Agreeing with Fay...you are being totally mismanaged by your doctor. PLEASE

try to find an endo or internest with thyroid experience! Your current doc is

causing you harm! This is negligence, in the least.

God bless,

<A

HREF= " http://hometown.aol.com/lisareynolds64/myhomepage/personal.html " >http://ho\

metown.aol.com/lisareynolds64/myhomepage/personal.html</A>

[Guest guest]

> I am new to the group although not new to Graves Disease...I was

> diagnosed in 1998 and have gone through RAI twice...went for four

> years with a TSH that would not rise above 0. The second time the

> RAI

> did finally destroy my thyroid. But since then the best TSH I have

> had is 11. Have had a terrible time getting my levels regulated

> since

> then and have seen a host of doctors. Currently I am hypothyroid

> with a TSH of 65.65.

>

> Don't even remember what it is like to feel good and at this point

> have accepted the fact that I probably never will again.

Hi Joanne. I reposted your message with " very hypo after RAI " in the

subject line so that people here who are swamped with mail won't delete

this, thinking you've been newly diagnosed with GD.

Don't mean to make you feel under assault but I have a lot of questions,

and other members are bound to have more.

- How often do you get your blood drawn?

- What tests do you get on a routine basis?

- What are your levels and what does your lab give for the normal ranges?

- What thyroid replacement are you taking? At what dose? At what time of

day?

- Do you have any eye involvement?

Here's the method to my madness: A doctor who would repeat RAI based on a

stalled TSH doesn't strike me as a doctor who would give you the

appropriate tests and more options for thyroid hormone replacement.

About bloodwork: You need not only TSH but FREE (not Total) T4 and T3.

People who are stable on their hormone replacement and feeling good may

be able to get by on T4 alone but many people who've had RAI end up

needing T3 replacement also. Ten to one your doctor only prescribes

synthroid or the other synthetic T4 hormones. Do you have copies of all

your labs>

About your eyes: Consider taking the supplement Omega 3. It's good for

overall health but has been shown to be good for the eyes of people with

TED (thyroid eye disease) and you would be susceptible to TED if you

don't have it already due to having had RAI as well as not being treated

properly afterwards.

This is just the tip of the iceberg. Further sources for info include

Shomon - her newsletter and book on living with hypothyroidism, a

book called Thyroid Power. There's also a thyroid group (don't remember

the address; it's something on Sts.edu) I was on a few years ago that

I dropped out of because the members there were primarily hypo. But,

there was a medical professional, I think an MD, who was very active and

helpful. There are probably much better sources for info I'm not familiar

with but these are decent sources that should break down the areas you

need to research.

With the proper medical care you will start to feel better. Take care,

Fay

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

I am currently only taking synthroid..just had dosage upped from .1

to .15 to try to bring my level down..the best level I have ever had

is 11 since RAI. I have argued for other medication especially since

I am always so depressed. We only seem to get my synthroid dosage

changed tho. This is my second endo. The first one had me do RAI

and after two years when my TSH was still 0 and I was becoming pretty

much suicidal, I changed doctors and my second one also had me do RAI

and he has been trying to manage it with synthroid only. My last lab

was on September 29 where my TSH was 65.65, he also did my T3 and T4

but I don't remember exactly what they were, one of the two was in

the low low normal range and one was high. Sorry I can't tell you

more on that, my memory at this point really sucks. My father in law

wants me to change to go down to the Mayo Clinic here in MN, he says

this has gone on way too long

> > I am new to the group although not new to Graves Disease...I was

> > diagnosed in 1998 and have gone through RAI twice...went for four

> > years with a TSH that would not rise above 0. The second time the

> > RAI

> > did finally destroy my thyroid. But since then the best TSH I

have

> > had is 11. Have had a terrible time getting my levels regulated

> > since

> > then and have seen a host of doctors. Currently I am hypothyroid

> > with a TSH of 65.65.

> >

> > Don't even remember what it is like to feel good and at this

point

> > have accepted the fact that I probably never will again.

>

>

> Hi Joanne. I reposted your message with " very hypo after RAI " in the

> subject line so that people here who are swamped with mail won't

delete

> this, thinking you've been newly diagnosed with GD.

> Don't mean to make you feel under assault but I have a lot of

questions,

> and other members are bound to have more.

> - How often do you get your blood drawn?

> - What tests do you get on a routine basis?

> - What are your levels and what does your lab give for the normal

ranges?

> - What thyroid replacement are you taking? At what dose? At what

time of

> day?

> - Do you have any eye involvement?

>

> Here's the method to my madness: A doctor who would repeat RAI

based on a

> stalled TSH doesn't strike me as a doctor who would give you the

> appropriate tests and more options for thyroid hormone replacement.

> About bloodwork: You need not only TSH but FREE (not Total) T4 and

T3.

> People who are stable on their hormone replacement and feeling good

may

> be able to get by on T4 alone but many people who've had RAI end up

> needing T3 replacement also. Ten to one your doctor only prescribes

> synthroid or the other synthetic T4 hormones. Do you have copies of

all

> your labs>

> About your eyes: Consider taking the supplement Omega 3. It's good

for

> overall health but has been shown to be good for the eyes of people

with

> TED (thyroid eye disease) and you would be susceptible to TED if you

> don't have it already due to having had RAI as well as not being

treated

> properly afterwards.

>

> This is just the tip of the iceberg. Further sources for info

include

> Shomon - her newsletter and book on living with

hypothyroidism, a

> book called Thyroid Power. There's also a thyroid group (don't

remember

> the address; it's something on Sts.edu) I was on a few years

ago that

> I dropped out of because the members there were primarily hypo. But,

> there was a medical professional, I think an MD, who was very

active and

> helpful. There are probably much better sources for info I'm not

familiar

> with but these are decent sources that should break down the areas

you

> need to research.

>

> With the proper medical care you will start to feel better. Take

care,

> Fay

>

> ________________________________________________________________

> The best thing to hit the internet in years - Juno SpeedBand!

> Surf the web up to FIVE TIMES FASTER!

> Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Also, I take my synthroid at night before I go to bed, I seem to have

more problems when I take around any time that i eat, also I take a

calcium supplement in the AM and from what I understand can affect my

levels also.

The only eye problems that I have is severe itching and feeling like

I have sand in them. I got a spray from my eye doctor that you spray

on closed lids and rub it in, it helps alot more than any of the

drops do and lasts longer.

I just primarily worry about what damage is happening to the rest of

me right now with levels like this, I know I feel horrible, but what

else is this doing to the rest of me?

> Hi Joanne,

>

> Agreeing with Fay...you are being totally mismanaged by your

doctor. PLEASE

> try to find an endo or internest with thyroid experience! Your

current doc is

> causing you harm! This is negligence, in the least.

>

> God bless,

>

> <A

HREF= " http://hometown.aol.com/lisareynolds64/myhomepage/personal.html "

>http://hometown.aol.com/lisareynolds64/myhomepage/personal.html</A>

>

>

>

[Guest guest]

Hi Joann -

Sorry you have been through the wringer on this. I agree with the other

people who have said you are being mismanaged. I think your father-in-law

might be on the right track. I take it you are in MN? , one of the

moderators of this board, lives in MN goes to one of the doctors at the

Mayo. I'm sure she would be happy to recommend a doctor to go to who knows

what they are doing! She is now hypo after Graves' as well, so she knows

what it's like to struggle with getting the dosage of replacement hormone

right. If you send her a message with " - doctor in MN? " in the subject,

or better yet - I'd send an email to her personally. I just remembered that

she had an emergency apendectomy last week or so. So she might not be

checking the board routinely. Her email address is petri017@...

I;m sure she would be able to tell you a competent doctor to see and get you

feeling better soon! Your FIL is right - this has gone on way to long and

you don't deserve to feel this way!

Good luck!

Re: Hello All - very hypo after RAI

> I am currently only taking synthroid..just had dosage upped from .1

> to .15 to try to bring my level down..the best level I have ever had

> is 11 since RAI. I have argued for other medication especially since

> I am always so depressed. We only seem to get my synthroid dosage

> changed tho. This is my second endo. The first one had me do RAI

> and after two years when my TSH was still 0 and I was becoming pretty

> much suicidal, I changed doctors and my second one also had me do RAI

> and he has been trying to manage it with synthroid only. My last lab

> was on September 29 where my TSH was 65.65, he also did my T3 and T4

> but I don't remember exactly what they were, one of the two was in

> the low low normal range and one was high. Sorry I can't tell you

> more on that, my memory at this point really sucks. My father in law

> wants me to change to go down to the Mayo Clinic here in MN, he says

> this has gone on way too long

>

>

> > > I am new to the group although not new to Graves Disease...I was

> > > diagnosed in 1998 and have gone through RAI twice...went for four

> > > years with a TSH that would not rise above 0. The second time the

> > > RAI

> > > did finally destroy my thyroid. But since then the best TSH I

> have

> > > had is 11. Have had a terrible time getting my levels regulated

> > > since

> > > then and have seen a host of doctors. Currently I am hypothyroid

> > > with a TSH of 65.65.

> > >

> > > Don't even remember what it is like to feel good and at this

> point

> > > have accepted the fact that I probably never will again.

> >

> >

> > Hi Joanne. I reposted your message with " very hypo after RAI " in the

> > subject line so that people here who are swamped with mail won't

> delete

> > this, thinking you've been newly diagnosed with GD.

> > Don't mean to make you feel under assault but I have a lot of

> questions,

> > and other members are bound to have more.

> > - How often do you get your blood drawn?

> > - What tests do you get on a routine basis?

> > - What are your levels and what does your lab give for the normal

> ranges?

> > - What thyroid replacement are you taking? At what dose? At what

> time of

> > day?

> > - Do you have any eye involvement?

> >

> > Here's the method to my madness: A doctor who would repeat RAI

> based on a

> > stalled TSH doesn't strike me as a doctor who would give you the

> > appropriate tests and more options for thyroid hormone replacement.

> > About bloodwork: You need not only TSH but FREE (not Total) T4 and

> T3.

> > People who are stable on their hormone replacement and feeling good

> may

> > be able to get by on T4 alone but many people who've had RAI end up

> > needing T3 replacement also. Ten to one your doctor only prescribes

> > synthroid or the other synthetic T4 hormones. Do you have copies of

> all

> > your labs>

> > About your eyes: Consider taking the supplement Omega 3. It's good

> for

> > overall health but has been shown to be good for the eyes of people

> with

> > TED (thyroid eye disease) and you would be susceptible to TED if you

> > don't have it already due to having had RAI as well as not being

> treated

> > properly afterwards.

> >

> > This is just the tip of the iceberg. Further sources for info

> include

> > Shomon - her newsletter and book on living with

> hypothyroidism, a

> > book called Thyroid Power. There's also a thyroid group (don't

> remember

> > the address; it's something on Sts.edu) I was on a few years

> ago that

> > I dropped out of because the members there were primarily hypo. But,

> > there was a medical professional, I think an MD, who was very

> active and

> > helpful. There are probably much better sources for info I'm not

> familiar

> > with but these are decent sources that should break down the areas

> you

> > need to research.

> >

> > With the proper medical care you will start to feel better. Take

> care,

> > Fay

> >

> > ________________________________________________________________

> > The best thing to hit the internet in years - Juno SpeedBand!

> > Surf the web up to FIVE TIMES FASTER!

> > Only $14.95/ month - visit www.juno.com to sign up today!

>

>

>

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intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

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>

> Advertisments placed on this yahoo groups list do not have the endorsement

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> the listowner. I have no input as to what ads are attached to emails.

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>

[Guest guest]

In a message dated 11/6/2003 6:38:49 PM Eastern Standard Time,

joannt517@... writes:

> My father in law

> wants me to change to go down to the Mayo Clinic here in MN, he says

> this has gone on way too long

>

Yes, he is totally correct!!!!

[Guest guest]

My last

> lab

> was on September 29 where my TSH was 65.65, he also did my T3 and T4

> but I don't remember exactly what they were, one of the two was in

> the low low normal range and one was high. Sorry I can't tell you

> more on that, my memory at this point really sucks.

The wonderful thing is - you don't need to rely on your memory. It is

your right to have copies of all your tests. If they won't mail them to

you go down to the office and get them. Do this now so they won't hassle

you when you need your records for endo #3.

My father in

> law

> wants me to change to go down to the Mayo Clinic here in MN

It's close enough to Thanksgiving that you can add supportive relatives

to your list of things to be thankful for!

Take care, Fay

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!