Re: between a rock and a hard place: new endo?

[Guest guest]

Barbie,

If you feel you can talk to the second doctor, at least have a

productive conversation, you may be better off there. You have had

two clean scans already and that does set you up to be a thyrogen

patient. So his testing with thyrogen, in your situation, seems to

be okay. Be sure to ask the doctor how many thyca patients he

treats. You want to be with a doctor that has lots of experience.

As for dosing, you can download some of the posting by Dr. Ain on

suppressive doses from the archives and share them with your doctor.

If it means anything to you, I have been on a suppressive dose for

34 years and do not have heart problems or osteoporosis. I believe

there was a recent study that showed thyroid medication did not

cause osteoporosis. I seem to remember posting something on that

awhile ago. Check the archives.

Gail

dx: 1968, TT, pap. & foll. well differentiated w/hurthle cell,

RAI,rad.neck dissection,lung surgery, hashimoto, high antibody

count, iodine resistant,existing thyca nodules in lungs.

Last surgery 1972

[Guest guest]

Barbie;

>

> The main reason I want to leave my endo is because her office staff

is

> extremely rude and she is almost impossible to reach.

- i had this issue at one of my physician's office, and I complained

to the doc when i finally got to talk to him. Complained is too soft

i word, i reminded him those people who work for him, work for me,

and i don't take to that kind of treatment. Apparently I wasn't the

only complainer, at my next appointment, there was a new office

manager, things have been MUCH better ever since.

> The reason I've stayed with her is because she (after some argument

on my

> part) give me doses to try to keep my TSH under the .1 (she

originally had

> me at under .4 until I nagged her enough to look it up or consult

with

> someone and, while she never admitted to having been wrong, she

adjusted my

> dose so that I've been under .1.

-- thats a good thing

>She also works in a group of five endos

the advantage to this is if she's out, there is someone else there

who can cover, who's part of the same office, access to your records

etc.

> Here are the concerns I have with the new endo:

>

The receptionists

> were nice and he is very light and jolly. This is quite a contrast.

sounds like a good thing

> 2. He believes that a thyca patient should have a TSH just

under .4. I ran

> into this same problem initially with my current endo and got her

to change

> her thinking to the suggested .1.

nice belief but not very healthy for us thycans...

> he said that he saw two problems with being so low; osteoporosis

and the

> heart having to work harder.

and does he have research to back this up?

I told him that my endo had me at a TSH of less

> than .1 and asked him if I could be under .1 with him. He sort of

mumbled

> and didn't really answer and implied that I wanted to be so low in

order to

> try to lose weight.

dismissive... this to me would be a warning sign

>

I was under the impression that every 12 pounds

> or so of weight loss or gain warranted a recheck of TSH to see if

dosages

> needed to be adjusted. Synthroid dosages are based on weight so I

figure

> that if I weigh less, I would need less Synthroid.

i don't know for sure about that, but it makes sense to me, since the

dosing recommendations (for figuring a starting dose) are based on

the patient's weight.

>

> 4. He told me that he only wants to see me once per year and that I

only

> need to get my TSH checked that often, unless there is a problem.

Does this

> seem right?

no - maybe I have overkill, but I see my endo twice a year, I have

TSH and TG drawn 4 times a year And we'll continue this practice for

5 years when I may drop to a once a year visit depending on my

situation and still 3 or 4 TSH/TG draws a year.

>

> 5. He told me that he only does thyrogen scans. This sounds good to

me but I

> wonder if it is best.

its not an absolute, Thyrogen is appropriate for those with clean

scans, but as part of a total picture, with TG figured in as well,

and physical examination...

>

There are pluses and minuses on each side. I'd rather be treated

like a cancer patient and have more vigilant care than have the happy

once a year doc.. but that's me. I'd also yell at the first endo or

complain to the practice manager about getting results to patients in

a timely, less stressed fashion.

barb

tt 8/99 RAI 4/00 clean scan 12/00 waiting for next scan

[Guest guest]

?

Try:

http://groups.yahoo.com/group/Thyca/message/9252

for more details.

Ian

> I had my RAI done Monday morning dose 30mci and sent home to lock myself

> away. Doctor said 3 days away from everyone today is Friday and I'm

> OUT!!!!! However my son 19 and husband act like they are scared to get

> around me my daughter 10 wants to get close to me but I want to stay away

> from her for a couple more days. Should I still wash everything I touch,use

> separate bathroom,not sleep with husband for a couple more days or was the

> 3 days like to nuc. doctor said o.k? I'm washing everything today

> sheets,pillows,comforter so its all clean even scrubbed down the bathroom I

> used is that enough?

Ian Adam

Radiation Safety Officer The Institute of Cancer Research

Cotswold Road

Sutton

Surrey

SM2 5NG

Tel: 020 8722 4250

Fax: 020 8722 4300

EMail: iana@...

[Guest guest]

You've already gotten some good advice from Barb and Gail.

To me the clear question is ... isn't there another endo around you can check

out? Alternatively, if you have a capable PCP with whom you have a good

relationship, s/he can probably monitor your

follow-up care.

-

Barbie Kelleher wrote:

> Hi Group,

> I had papillary two years ago and have had two (out of two) clean scans.

> After two years of anxiety in terms of dealing with my endo and her office

> staff, I decided to try a new endo. I met with him today and some confusion

> has come up. I hate to put it so negatively but it seems to come to down to

> choosing “the lesser of two evils.” So, here’s what I am grappling with.

> I’d love to get your input:

>

> The main reason I want to leave my endo is because her office staff is

> extremely rude and she is almost impossible to reach. Literally, in order

> to get blood work results, I usually have to fax her and call at least four

> times. Sometimes, I’ve resorted to calling the emergency after hours number

> just to get critical info. (like calling to find out if my TSH had cleared a

> 30 in order to scan). In my last bout of faxing/ trying to get info., she

> finally called me after I sent an anxiety ridden plea/fax to her begging her

> to send me a prescription of a lower dose because I had a TSH of .002 and I

> was hot flashing, palpitating and going nuts. She called and said that she

> was sorry but she had never received my previous messages and calls (I had

> gone in for blood work ten days earlier) and that she confessed that I

> should only have to try to contact her once and that more than once was not

> right. In any event, it’s been this way for 2 years.

>

> The reason I’ve stayed with her is because she (after some argument on my

> part) give me doses to try to keep my TSH under the .1 (she originally had

> me at under .4 until I nagged her enough to look it up or consult with

> someone and, while she never admitted to having been wrong, she adjusted my

> dose so that I’ve been under .1. She also works in a group of five endos

> across the street from the hospital in a high rise in “the most reputable

> endocrinology office in the county” (as you guys know, that doesn’t

> necessarily mean much. There are just a few endo offices in this county).

> So basically, I’ve stayed with her because of the reputation of her office

> and because after two painstaking years, she sends me the blood work when I

> ask for it and basically does whatever I want. I figure that once my TSH is

> adjusted, I’d only have to see her once or twice peryear, so the anxiety

> would be tolerable.

>

> Well, after the last bout, my husband asked me if I would at least try this

> new endo since this current one takes a good three to four weeks of quality

> out of our lives (anxiety about going in for the blood work, the appt. and

> dealing with the nasty receptionists, trying to get the blood work, the

> prescriptions, etc.).

>

> Here are the concerns I have with the new endo:

>

> 1. This is more of an observation…He works out of a house that’s been

> renovated into an office. It’s got the small town charm with the fake dark

> paneled walls and the blown up photos of cats and flowers and such that he

> takes in his spare time. The atmosphere is very homey. The receptionists

> were nice and he is very light and jolly. This is quite a contrast.

> 2. He believes that a thyca patient should have a TSH just under .4. I ran

> into this same problem initially with my current endo and got her to change

> her thinking to the suggested .1. I mentioned without harassing the .1 and

> he said that he saw two problems with being so low; osteoporosis and the

> heart having to work harder. I told him that my endo had me at a TSH of less

> than .1 and asked him if I could be under .1 with him. He sort of mumbled

> and didn’t really answer and implied that I wanted to be so low in order to

> try to lose weight. I am not sure where to go with this now and whether or

> not I can win this battle again or frankly whether I want to. After two

> years of being up and down with my TSH (at times, I’ve screwed up and eaten

> with my Synthroid and had my TSH go up to a 2), I’ve realized that I am most

> comfortable right around a .1. I am very high strung person and I wonder how

> bad it would be for me to be at a .1 or .2. It’s a matter of balancing

> quality of life with fear of getting thyca again.

>

> 3. I told him that I had recently lost 25 pounds at a “boot camp” weight

> loss center and therefore had my Synthroid dosage lowered because my TSH

> went from .128 to .002. He said that the need for dosage change had nothing

> to do with losing weight but moreso to do with a change in the way in which

> my body metabolizes things. I was under the impression that every 12 pounds

> or so of weight loss or gain warranted a recheck of TSH to see if dosages

> needed to be adjusted. Synthroid dosages are based on weight so I figure

> that if I weigh less, I would need less Synthroid.

>

> 4. He told me that he only wants to see me once per year and that I only

> need to get my TSH checked that often, unless there is a problem. Does this

> seem right?

>

> 5. He told me that he only does thyrogen scans. This sounds good to me but I

> wonder if it is best.

>

> Overall, this doctor made me feel well. He seemed to almost brush this off.

> My other doctor made me feel like a cancer patient. And now the situation

> presents itself where I have to wonder once again what a good TSH is for me.

> I realize that the recommendation is under .1, but I seriously weigh the

> need for good mental balance and low stress versus being under the “magic

> .1.” Today I lean toward going with the new guy but tomorrow I bet I could

> just as well go with the old endo. Any thoughts? Thanks again.

>

> Barbie

> tt pap 2/00

> 150 mCi

> clear scans 4/00, 4/01

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

> For more information regarding thyroid cancer visit www.thyca.org. If you do

not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email

to thyca-unsubscribe

>

>

>

[Guest guest]

I had my RAI done Monday morning dose 30mci and sent home to lock myself away.

Doctor said 3 days away from everyone today is Friday and I'm OUT!!!!! However

my son 19 and husband act like they are scared to get around me my daughter 10

wants to get close to me but I want to stay away from her for a couple more

days. Should I still wash everything I touch,use separate bathroom,not sleep

with husband for a couple more days or was the 3 days like to nuc. doctor said

o.k? I'm washing everything today sheets,pillows,comforter so its all clean even

scrubbed down the bathroom I used is that enough? Re: between a rock and a hard place: new endo?

Barbie;

>

> The main reason I want to leave my endo is because her office staff

is

> extremely rude and she is almost impossible to reach.

- i had this issue at one of my physician's office, and I complained

to the doc when i finally got to talk to him. Complained is too soft

i word, i reminded him those people who work for him, work for me,

and i don't take to that kind of treatment. Apparently I wasn't the

only complainer, at my next appointment, there was a new office

manager, things have been MUCH better ever since.

> The reason I've stayed with her is because she (after some argument

on my

> part) give me doses to try to keep my TSH under the .1 (she

originally had

> me at under .4 until I nagged her enough to look it up or consult

with

> someone and, while she never admitted to having been wrong, she

adjusted my

> dose so that I've been under .1.

-- thats a good thing

>She also works in a group of five endos

the advantage to this is if she's out, there is someone else there

who can cover, who's part of the same office, access to your records

etc.

> Here are the concerns I have with the new endo:

>

The receptionists

> were nice and he is very light and jolly. This is quite a contrast.

sounds like a good thing

> 2. He believes that a thyca patient should have a TSH just

under .4. I ran

> into this same problem initially with my current endo and got her

to change

> her thinking to the suggested .1.

nice belief but not very healthy for us thycans...

> he said that he saw two problems with being so low; osteoporosis

and the

> heart having to work harder.

and does he have research to back this up?

I told him that my endo had me at a TSH of less

> than .1 and asked him if I could be under .1 with him. He sort of

mumbled

> and didn't really answer and implied that I wanted to be so low in

order to

> try to lose weight.

dismissive... this to me would be a warning sign

>

I was under the impression that every 12 pounds

> or so of weight loss or gain warranted a recheck of TSH to see if

dosages

> needed to be adjusted. Synthroid dosages are based on weight so I

figure

> that if I weigh less, I would need less Synthroid.

i don't know for sure about that, but it makes sense to me, since the

dosing recommendations (for figuring a starting dose) are based on

the patient's weight.

>

> 4. He told me that he only wants to see me once per year and that I

only

> need to get my TSH checked that often, unless there is a problem.

Does this

> seem right?

no - maybe I have overkill, but I see my endo twice a year, I have

TSH and TG drawn 4 times a year And we'll continue this practice for

5 years when I may drop to a once a year visit depending on my

situation and still 3 or 4 TSH/TG draws a year.

>

> 5. He told me that he only does thyrogen scans. This sounds good to

me but I

> wonder if it is best.

its not an absolute, Thyrogen is appropriate for those with clean

scans, but as part of a total picture, with TG figured in as well,

and physical examination...

>

There are pluses and minuses on each side. I'd rather be treated

like a cancer patient and have more vigilant care than have the happy

once a year doc.. but that's me. I'd also yell at the first endo or

complain to the practice manager about getting results to patients in

a timely, less stressed fashion.

barb

tt 8/99 RAI 4/00 clean scan 12/00 waiting for next scan

[Guest guest]

Try a third endo! I had the endo from no where. He was no where to be

found anythime there was follow up to be done. I ran everything through my

M.D. He's back in his home country practicing now and I was forced to see

another endo. Didn't care for her either. Now I have a third and love him.

He spends the time with me that I need and answers all questions! Don't

settle!

Debbie

between a rock and a hard place: new endo?

> Hi Group,

> I had papillary two years ago and have had two (out of two) clean scans.

> After two years of anxiety in terms of dealing with my endo and her office

> staff, I decided to try a new endo. I met with him today and some

confusion

> has come up. I hate to put it so negatively but it seems to come to down

to

> choosing " the lesser of two evils. " So, here's what I am grappling with.

> I'd love to get your input:

>

> The main reason I want to leave my endo is because her office staff is

> extremely rude and she is almost impossible to reach. Literally, in order

> to get blood work results, I usually have to fax her and call at least

four

> times. Sometimes, I've resorted to calling the emergency after hours

number

> just to get critical info. (like calling to find out if my TSH had cleared

a

> 30 in order to scan). In my last bout of faxing/ trying to get info., she

> finally called me after I sent an anxiety ridden plea/fax to her begging

her

> to send me a prescription of a lower dose because I had a TSH of .002 and

I

> was hot flashing, palpitating and going nuts. She called and said that she

> was sorry but she had never received my previous messages and calls (I had

> gone in for blood work ten days earlier) and that she confessed that I

> should only have to try to contact her once and that more than once was

not

> right. In any event, it's been this way for 2 years.

>

> The reason I've stayed with her is because she (after some argument on my

> part) give me doses to try to keep my TSH under the .1 (she originally had

> me at under .4 until I nagged her enough to look it up or consult with

> someone and, while she never admitted to having been wrong, she adjusted

my

> dose so that I've been under .1. She also works in a group of five endos

> across the street from the hospital in a high rise in " the most reputable

> endocrinology office in the county " (as you guys know, that doesn't

> necessarily mean much. There are just a few endo offices in this county).

> So basically, I've stayed with her because of the reputation of her office

> and because after two painstaking years, she sends me the blood work when

I

> ask for it and basically does whatever I want. I figure that once my TSH

is

> adjusted, I'd only have to see her once or twice peryear, so the anxiety

> would be tolerable.

>

> Well, after the last bout, my husband asked me if I would at least try

this

> new endo since this current one takes a good three to four weeks of

quality

> out of our lives (anxiety about going in for the blood work, the appt. and

> dealing with the nasty receptionists, trying to get the blood work, the

> prescriptions, etc.).

>

> Here are the concerns I have with the new endo:

>

> 1. This is more of an observation.He works out of a house that's been

> renovated into an office. It's got the small town charm with the fake dark

> paneled walls and the blown up photos of cats and flowers and such that he

> takes in his spare time. The atmosphere is very homey. The receptionists

> were nice and he is very light and jolly. This is quite a contrast.

> 2. He believes that a thyca patient should have a TSH just under .4. I

ran

> into this same problem initially with my current endo and got her to

change

> her thinking to the suggested .1. I mentioned without harassing the .1

and

> he said that he saw two problems with being so low; osteoporosis and the

> heart having to work harder. I told him that my endo had me at a TSH of

less

> than .1 and asked him if I could be under .1 with him. He sort of mumbled

> and didn't really answer and implied that I wanted to be so low in order

to

> try to lose weight. I am not sure where to go with this now and whether

or

> not I can win this battle again or frankly whether I want to. After two

> years of being up and down with my TSH (at times, I've screwed up and

eaten

> with my Synthroid and had my TSH go up to a 2), I've realized that I am

most

> comfortable right around a .1. I am very high strung person and I wonder

how

> bad it would be for me to be at a .1 or .2. It's a matter of balancing

> quality of life with fear of getting thyca again.

>

> 3. I told him that I had recently lost 25 pounds at a " boot camp " weight

> loss center and therefore had my Synthroid dosage lowered because my TSH

> went from .128 to .002. He said that the need for dosage change had

nothing

> to do with losing weight but moreso to do with a change in the way in

which

> my body metabolizes things. I was under the impression that every 12

pounds

> or so of weight loss or gain warranted a recheck of TSH to see if dosages

> needed to be adjusted. Synthroid dosages are based on weight so I figure

> that if I weigh less, I would need less Synthroid.

>

> 4. He told me that he only wants to see me once per year and that I only

> need to get my TSH checked that often, unless there is a problem. Does

this

> seem right?

>

> 5. He told me that he only does thyrogen scans. This sounds good to me but

I

> wonder if it is best.

>

> Overall, this doctor made me feel well. He seemed to almost brush this

off.

> My other doctor made me feel like a cancer patient. And now the

situation

> presents itself where I have to wonder once again what a good TSH is for

me.

> I realize that the recommendation is under .1, but I seriously weigh the

> need for good mental balance and low stress versus being under the " magic

> .1. " Today I lean toward going with the new guy but tomorrow I bet I

could

> just as well go with the old endo. Any thoughts? Thanks again.

>

> Barbie

> tt pap 2/00

> 150 mCi

> clear scans 4/00, 4/01

>

>

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

> For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

>

>

>

[Guest guest]

Barbie. Keep Searching!! That is only 2 endos out of many. I went through

this same dilemma and just found the endo of my dreams! (thus far anyway). I

will be forwarding you one of my old posts if I can find it. Stay positive,

go with your gut, and do not settle. I don't know if you have children, or a

close loved one. Look at it through that prospective. Sometimes we gyp

ourselves, but would never imagine doing it for someone we love! Good

Luck, from CT

[Guest guest]

Thanks to everyone who suggests trying to find another endo. As

amazing at it seems, I live an hour outside of NYC and these two are

the only endos in my county who take my insurance and know anything

about thyca. I keep checking the yellow pages hoping that a new

office will crop up. (I live in County, NJ if anyone knows of

a good endo nearby, please let me know!)

As I predicted, I'm now starting to think that I'd better stay with

the original one who knows more about thyca and who can always

discuss things with her four other colleagues regarding any

discrepancies. Somehow I'll have to make the relationship work. In

the first year post surgery I saw her once a month for various

problems that now seem to have ironed themselves out. In the second I

saw her probably 4 times during the course of the whole year. And

now I am just trying to stay positive and think that I may be able to

get away with just seeing her once or twice per year. That turns out

to be as about as often as I see my mother-in-law, so if I can

tolerate her, I guess I can try to make it work with this endo.

If not, I will start to look outside of my county. Perhaps I should

even consider NYC. What's a few hours of driving twice per year for

the sake of some good medical advice and peace of mind?

Anyway, that's what I am thinking today. It could change! I'm a bit

hormonal, as you can tell. Thanks so much!

> Barbie. Keep Searching!! That is only 2 endos out of many. I

went through

> this same dilemma and just found the endo of my dreams! (thus far

anyway). I

> will be forwarding you one of my old posts if I can find it. Stay

positive,

> go with your gut, and do not settle. I don't know if you have

children, or a

> close loved one. Look at it through that prospective. Sometimes

we gyp

> ourselves, but would never imagine doing it for someone we

love! Good

> Luck, from CT

[Guest guest]

Speaking as someone a 20-minute drive across town (and there's a bus a

few steps away if needed) to a top thyca " shop " , I'd say -- get a good

endo even if it means a bit of travel, it's only a few times a year.

And perhaps you can arrange to get any extra blood tests done locally,

if the " faraway " endo thinks the local lab is suitable & /or can send

some of the tests elsewhere.

I started out with an endo who was even more conveniently located -- I

could walk there and get my daily exercise as well as do the doctor

visit (the doctor was nice, the nurse and office staff were nice,

and the building has a great coffee shop)! But I changed to get

better followup care. I've also recommended to a young relative in a

rural area (a couple or three endos for a couple of counties and a

small city!) that she come here for an FNA rather than have it done

locally by someone who doesn't do a lot of it.

I'm learning all the right things to do and the questions to ask after

I needed to know them! I hope to apply these lessons learned to other

health probs that come up! I really need to remember the mantra: " do

they do a lot of this here " -- and go where they do.

bj

Re: between a rock and a hard place: new endo?

> Thanks to everyone who suggests trying to find another endo. As

amazing at it seems, I live an hour outside of NYC and these two are

the only endos in my county who take my insurance and know anything

about thyca.

> .....

> If not, I will start to look outside of my county. Perhaps I should

even consider NYC. What's a few hours of driving twice per year for

the sake of some good medical advice and peace of mind?

>

[Guest guest]

I'd say -- get a good

> endo even if it means a bit of travel, it's only a few times a year.

> And perhaps you can arrange to get any extra blood tests done

locally,

> if the " faraway " endo thinks the local lab is suitable & /or can send

> some of the tests elsewhere.

This is how I do it, my endo is about 45 miles away, he was the

closest one with thyca experience (and luckily he's great!, a nice

man, with a good background in thyca, and a skier besides...) and he

sets it up so I do my blood work at my primary care doc (who is about

25 miles away) and has even set it up so I do my thyrogen thru my PCP

to get the shots, we do my scans at a hospital pretty close to me and

the only real travel is to see him a few times a year or when I need

RAI up to manchester for that .

barb