Re: Bummer... strike 2 with an Endocrinologist.

[Guest guest]

In Europe, the standard of care for hyperthyroidism is total thyroidectomy. But I seem to remember there was some reason that would not work for you?

You might want to check with hyper patient groups and see if anyone has been able to cure their hyper with natural herbs and supplements. A number of years ago I met a lady in Whole Foods Market who had done just that.

>> Struck out with the new endocrinolgist today. She looked at me like I had lost my mind to continue going back on Tapazole for a 5th time. > > She stood up for the awesomeness of my previous doctor (already on the groups NO list more than once *yeah, that was a sign this wasn't going to work out.) > > Then she told me that Tapazole is just as bad as PTU (whatever, which med got the black box warning again?), and why on earth would I risk hepatitis and kidney/liver failure and aplastic anemia vs RAI and risk of TED with my medical history. > > Wow...Just WOW. > > She hadn't read or even heard of any of the latest scholarly research showing that patients on long term ATDs vs choosing RAI, had less spent less money and had mildly better cardiac health. Or that low dose ATDs (5mg/day) had VERY low risk of the severe side effects.> > She also tried to insist that this years U.S. treatment guidelines said under no circumstances should you do more than 18 months on ATD drugs of any kind whether PTU or Tapazole. Exaggeration anyone.> > sigh.> > I updated the doc list.> > Dec 6, going to try an ENT appointment. Maybe I'm just working with the wrong class of doctors...the endo's just don't seem to be doing it for me.> > Are they just all gun shy after all the PTU deaths and side effects?>

[Guest guest]

In Europe, the standard of care for hyperthyroidism is total thyroidectomy. But I seem to remember there was some reason that would not work for you?

You might want to check with hyper patient groups and see if anyone has been able to cure their hyper with natural herbs and supplements. A number of years ago I met a lady in Whole Foods Market who had done just that.

>> Struck out with the new endocrinolgist today. She looked at me like I had lost my mind to continue going back on Tapazole for a 5th time. > > She stood up for the awesomeness of my previous doctor (already on the groups NO list more than once *yeah, that was a sign this wasn't going to work out.) > > Then she told me that Tapazole is just as bad as PTU (whatever, which med got the black box warning again?), and why on earth would I risk hepatitis and kidney/liver failure and aplastic anemia vs RAI and risk of TED with my medical history. > > Wow...Just WOW. > > She hadn't read or even heard of any of the latest scholarly research showing that patients on long term ATDs vs choosing RAI, had less spent less money and had mildly better cardiac health. Or that low dose ATDs (5mg/day) had VERY low risk of the severe side effects.> > She also tried to insist that this years U.S. treatment guidelines said under no circumstances should you do more than 18 months on ATD drugs of any kind whether PTU or Tapazole. Exaggeration anyone.> > sigh.> > I updated the doc list.> > Dec 6, going to try an ENT appointment. Maybe I'm just working with the wrong class of doctors...the endo's just don't seem to be doing it for me.> > Are they just all gun shy after all the PTU deaths and side effects?>

[Guest guest]

In Europe, the standard of care for hyperthyroidism is total thyroidectomy. But I seem to remember there was some reason that would not work for you?

You might want to check with hyper patient groups and see if anyone has been able to cure their hyper with natural herbs and supplements. A number of years ago I met a lady in Whole Foods Market who had done just that.

>> Struck out with the new endocrinolgist today. She looked at me like I had lost my mind to continue going back on Tapazole for a 5th time. > > She stood up for the awesomeness of my previous doctor (already on the groups NO list more than once *yeah, that was a sign this wasn't going to work out.) > > Then she told me that Tapazole is just as bad as PTU (whatever, which med got the black box warning again?), and why on earth would I risk hepatitis and kidney/liver failure and aplastic anemia vs RAI and risk of TED with my medical history. > > Wow...Just WOW. > > She hadn't read or even heard of any of the latest scholarly research showing that patients on long term ATDs vs choosing RAI, had less spent less money and had mildly better cardiac health. Or that low dose ATDs (5mg/day) had VERY low risk of the severe side effects.> > She also tried to insist that this years U.S. treatment guidelines said under no circumstances should you do more than 18 months on ATD drugs of any kind whether PTU or Tapazole. Exaggeration anyone.> > sigh.> > I updated the doc list.> > Dec 6, going to try an ENT appointment. Maybe I'm just working with the wrong class of doctors...the endo's just don't seem to be doing it for me.> > Are they just all gun shy after all the PTU deaths and side effects?>

[Guest guest]

Lousy reaction to anesthesia is the big one. My blood pressure bottoms out. If I

absolutely run out of doctors willing to prescribe ATD medications, I won't have

much choice though. It's also expensive, the reportedly best thyroid surgeon in

town doesn't take insurance.

I did find this really cool link tonight though, ATDs + steroid injections to

the thyroid gland = huge drop in relapse rate.

http://www.medscape.com/viewarticle/714049

free membership is required to view it.

Of COURSE the dosage for the steroid injection isn't in there...but all of a

sudden I have a bit of hope. It's a year old, so maybe 3-5 years from now

someone will replicate it!

J Clin Endocrinol Metab 2009;94:4984-4991 is the journal reference, now if only

I can find it online to see if the dosage and protocols are detailed.

-

>

>

> In Europe, the standard of care for hyperthyroidism is total

> thyroidectomy. But I seem to remember there was some reason that would

> not work for you?

[Guest guest]

Lousy reaction to anesthesia is the big one. My blood pressure bottoms out. If I

absolutely run out of doctors willing to prescribe ATD medications, I won't have

much choice though. It's also expensive, the reportedly best thyroid surgeon in

town doesn't take insurance.

I did find this really cool link tonight though, ATDs + steroid injections to

the thyroid gland = huge drop in relapse rate.

http://www.medscape.com/viewarticle/714049

free membership is required to view it.

Of COURSE the dosage for the steroid injection isn't in there...but all of a

sudden I have a bit of hope. It's a year old, so maybe 3-5 years from now

someone will replicate it!

J Clin Endocrinol Metab 2009;94:4984-4991 is the journal reference, now if only

I can find it online to see if the dosage and protocols are detailed.

-

>

>

> In Europe, the standard of care for hyperthyroidism is total

> thyroidectomy. But I seem to remember there was some reason that would

> not work for you?

[Guest guest]

Lousy reaction to anesthesia is the big one. My blood pressure bottoms out. If I

absolutely run out of doctors willing to prescribe ATD medications, I won't have

much choice though. It's also expensive, the reportedly best thyroid surgeon in

town doesn't take insurance.

I did find this really cool link tonight though, ATDs + steroid injections to

the thyroid gland = huge drop in relapse rate.

http://www.medscape.com/viewarticle/714049

free membership is required to view it.

Of COURSE the dosage for the steroid injection isn't in there...but all of a

sudden I have a bit of hope. It's a year old, so maybe 3-5 years from now

someone will replicate it!

J Clin Endocrinol Metab 2009;94:4984-4991 is the journal reference, now if only

I can find it online to see if the dosage and protocols are detailed.

-

>

>

> In Europe, the standard of care for hyperthyroidism is total

> thyroidectomy. But I seem to remember there was some reason that would

> not work for you?

[Guest guest]

Hi ,

After a very personal and extremely scary episode of awaking from anesthesia

twice in a month with half the surgical crew staring at me and cussing

themselves, I later had a long sit down talk with the kindest and most

informative anesthesiologist. Actually the first time I was so gone I do not

remember the fiasco in the recovery room but was informed about it. After the

second surgery I awoke in recovery wondering why everyone was so angry with me

(different doc and different hospital cause I fired the first ones).

I learned that there are short acting anesthesias that are better some us. The

shorter acting ones fully anesthetize, but wear off much more quickly and do not

go through the same detoxification pathways as the longer acting agents.

I do not know what all happened that got everyone in such a tizzie as I was way

too out of it to care at the time and had nobody there to fend for me. And I

never did go back to check the medical records. I do know that my thyroid was

way out of whack and totally untreated at the time.

For subsequent surgeries I have informed the anesthesiologist of the reactions

of the group of medical people those two times, and had the anesthesia type

adjusted accordingly with no subsequent problems. Still takes me longer to

recover from the anesthesia than most, but I was no longer a health threat to

myself and others. And they knew to watch me for signs of anesthesia problems

and I sense that forewarning actually served to head off development of the

reactions I had previously experienced.

If this does not tie in whatsoever to what happens in your case, I hope you will

find the help you are seeking.

I am praying for you as it can be so frustrating and frightening when other

medical conditions have such serious health overlays as you have described.

Maybe one of the other forums, either herbal or thyroid, would have information

like Jan suggested about herbal management or another intervention method. I

pray that all the roadblocks in your personal pathway to healing and good health

will be removed so you can advance on your journey to better health!

Many years later I was finally diagnosed with CFIDS/FM/ME and learned more about

the connectin to my own anesthesia intolerance. So I just now went to the

National CFIDS Foundation site and typed in " anesthesia " to get a full page of

links about anesthesia as relates to those immune system issues. Hope some of

this helps somehow.

Blessings, a

> >

> >

> > In Europe, the standard of care for hyperthyroidism is total

> > thyroidectomy. But I seem to remember there was some reason that would

> > not work for you?

>

[Guest guest]

Hi ,

After a very personal and extremely scary episode of awaking from anesthesia

twice in a month with half the surgical crew staring at me and cussing

themselves, I later had a long sit down talk with the kindest and most

informative anesthesiologist. Actually the first time I was so gone I do not

remember the fiasco in the recovery room but was informed about it. After the

second surgery I awoke in recovery wondering why everyone was so angry with me

(different doc and different hospital cause I fired the first ones).

I learned that there are short acting anesthesias that are better some us. The

shorter acting ones fully anesthetize, but wear off much more quickly and do not

go through the same detoxification pathways as the longer acting agents.

I do not know what all happened that got everyone in such a tizzie as I was way

too out of it to care at the time and had nobody there to fend for me. And I

never did go back to check the medical records. I do know that my thyroid was

way out of whack and totally untreated at the time.

For subsequent surgeries I have informed the anesthesiologist of the reactions

of the group of medical people those two times, and had the anesthesia type

adjusted accordingly with no subsequent problems. Still takes me longer to

recover from the anesthesia than most, but I was no longer a health threat to

myself and others. And they knew to watch me for signs of anesthesia problems

and I sense that forewarning actually served to head off development of the

reactions I had previously experienced.

If this does not tie in whatsoever to what happens in your case, I hope you will

find the help you are seeking.

I am praying for you as it can be so frustrating and frightening when other

medical conditions have such serious health overlays as you have described.

Maybe one of the other forums, either herbal or thyroid, would have information

like Jan suggested about herbal management or another intervention method. I

pray that all the roadblocks in your personal pathway to healing and good health

will be removed so you can advance on your journey to better health!

Many years later I was finally diagnosed with CFIDS/FM/ME and learned more about

the connectin to my own anesthesia intolerance. So I just now went to the

National CFIDS Foundation site and typed in " anesthesia " to get a full page of

links about anesthesia as relates to those immune system issues. Hope some of

this helps somehow.

Blessings, a

> >

> >

> > In Europe, the standard of care for hyperthyroidism is total

> > thyroidectomy. But I seem to remember there was some reason that would

> > not work for you?

>

[Guest guest]

Hi ,

After a very personal and extremely scary episode of awaking from anesthesia

twice in a month with half the surgical crew staring at me and cussing

themselves, I later had a long sit down talk with the kindest and most

informative anesthesiologist. Actually the first time I was so gone I do not

remember the fiasco in the recovery room but was informed about it. After the

second surgery I awoke in recovery wondering why everyone was so angry with me

(different doc and different hospital cause I fired the first ones).

I learned that there are short acting anesthesias that are better some us. The

shorter acting ones fully anesthetize, but wear off much more quickly and do not

go through the same detoxification pathways as the longer acting agents.

I do not know what all happened that got everyone in such a tizzie as I was way

too out of it to care at the time and had nobody there to fend for me. And I

never did go back to check the medical records. I do know that my thyroid was

way out of whack and totally untreated at the time.

For subsequent surgeries I have informed the anesthesiologist of the reactions

of the group of medical people those two times, and had the anesthesia type

adjusted accordingly with no subsequent problems. Still takes me longer to

recover from the anesthesia than most, but I was no longer a health threat to

myself and others. And they knew to watch me for signs of anesthesia problems

and I sense that forewarning actually served to head off development of the

reactions I had previously experienced.

If this does not tie in whatsoever to what happens in your case, I hope you will

find the help you are seeking.

I am praying for you as it can be so frustrating and frightening when other

medical conditions have such serious health overlays as you have described.

Maybe one of the other forums, either herbal or thyroid, would have information

like Jan suggested about herbal management or another intervention method. I

pray that all the roadblocks in your personal pathway to healing and good health

will be removed so you can advance on your journey to better health!

Many years later I was finally diagnosed with CFIDS/FM/ME and learned more about

the connectin to my own anesthesia intolerance. So I just now went to the

National CFIDS Foundation site and typed in " anesthesia " to get a full page of

links about anesthesia as relates to those immune system issues. Hope some of

this helps somehow.

Blessings, a

> >

> >

> > In Europe, the standard of care for hyperthyroidism is total

> > thyroidectomy. But I seem to remember there was some reason that would

> > not work for you?

>