Questions

[Guest guest]

Hi Tonya, I rcvd my scan 2 and 1/2 months after my radiation. I would get a

second opinion and speak up. I have had to on a number of occassions. My

neighbour had to wait a year and she found it mentally draining. Good Luck

Jo

Re: questions

Hi Tonya,

Congrats on finishing up with your treatments! Now you can

focus on getting yourself regulated on your medicine and getting

your life back to normal.

One year is the norm for thyroid cancer follow-up. Some people

go back after 6 or 9 months, but usually it's because they have a

more difficult situation.

It may seem like agony to wait a whole year to find out if RAI

finished the job, but the cells often take that long to finish dying

off. Throughout this next year you'll be slowly processing

everything that has just happened to you, but soon enough you

will be able to start putting this on the back burner and focus

again on the things in life you find rewarding and that make you

happy.

Best wishes,

--Carmen in nyc

10/00 TT, pap thyca

11/00 RAI 100 mCi

2/03 Second RAI scheduled

> Hello everyone,

> I have been a member of this group since October when I first

found

> out I had thyroid cancer. I underwent a total thyroidectomy in

> December and just underwent my first RAI because my scan

was clean

> except for some " risidual " effect in the neck. I did have a few

> lymph nodes in the neck posisitive as well. So my question. I

> underwent my RAI and I asked when I should come back for

another scan

> to make sure this has taken care of it and I was told a year. Is

> this normal. It seems like a long time to put your life on hold to

> know for sure. I know you never know for sure and it can come

back

> but to not know if the dose was enough seems strange to me.

The

> doctor is well known and seemed knowledgable but I have

learned to

> get second opinions so I am going to also try and contact a

endo. I

> will need one ayway to get me regulated on meds. Is this

normal

> practice or should I find someone who will do another in six

months

> or maybe I just need to be louder and demand it? I can't tell

you

> how much all of your stories help me to keep hope alive. I

know that

> like most of you there are days I feel like giving up and am

angry

> but I know there is hope out there and I would just like to tell

> everyone thank you.

>

> Sincerely,

> Tonya

[Guest guest]

HI Tonya,

I had my scan 2 and 1/2 months after my radiation. If you are uncomfortable

waiting a year which seems really long to me then look around. 2 and 1/2 months

was a long wait to me. My neighbour had to wait a year and she found it

mentally draining. Good Luck.

Jo

questions

Hello everyone,

I have been a member of this group since October when I first found

out I had thyroid cancer. I underwent a total thyroidectomy in

December and just underwent my first RAI because my scan was clean

except for some " risidual " effect in the neck. I did have a few

lymph nodes in the neck posisitive as well. So my question. I

underwent my RAI and I asked when I should come back for another scan

to make sure this has taken care of it and I was told a year. Is

this normal. It seems like a long time to put your life on hold to

know for sure. I know you never know for sure and it can come back

but to not know if the dose was enough seems strange to me. The

doctor is well known and seemed knowledgable but I have learned to

get second opinions so I am going to also try and contact a endo. I

will need one ayway to get me regulated on meds. Is this normal

practice or should I find someone who will do another in six months

or maybe I just need to be louder and demand it? I can't tell you

how much all of your stories help me to keep hope alive. I know that

like most of you there are days I feel like giving up and am angry

but I know there is hope out there and I would just like to tell

everyone thank you.

Sincerely,

Tonya

[Guest guest]

HI Tonya,

I had my scan 2 and 1/2 months after my radiation. If you are uncomfortable

waiting a year which seems really long to me then look around. 2 and 1/2 months

was a long wait to me. My neighbour had to wait a year and she found it

mentally draining. Good Luck.

Jo

questions

Hello everyone,

I have been a member of this group since October when I first found

out I had thyroid cancer. I underwent a total thyroidectomy in

December and just underwent my first RAI because my scan was clean

except for some " risidual " effect in the neck. I did have a few

lymph nodes in the neck posisitive as well. So my question. I

underwent my RAI and I asked when I should come back for another scan

to make sure this has taken care of it and I was told a year. Is

this normal. It seems like a long time to put your life on hold to

know for sure. I know you never know for sure and it can come back

but to not know if the dose was enough seems strange to me. The

doctor is well known and seemed knowledgable but I have learned to

get second opinions so I am going to also try and contact a endo. I

will need one ayway to get me regulated on meds. Is this normal

practice or should I find someone who will do another in six months

or maybe I just need to be louder and demand it? I can't tell you

how much all of your stories help me to keep hope alive. I know that

like most of you there are days I feel like giving up and am angry

but I know there is hope out there and I would just like to tell

everyone thank you.

Sincerely,

Tonya

[Guest guest]

HI Tonya,

I had my scan 2 and 1/2 months after my radiation. If you are uncomfortable

waiting a year which seems really long to me then look around. 2 and 1/2 months

was a long wait to me. My neighbour had to wait a year and she found it

mentally draining. Good Luck.

Jo

questions

Hello everyone,

I have been a member of this group since October when I first found

out I had thyroid cancer. I underwent a total thyroidectomy in

December and just underwent my first RAI because my scan was clean

except for some " risidual " effect in the neck. I did have a few

lymph nodes in the neck posisitive as well. So my question. I

underwent my RAI and I asked when I should come back for another scan

to make sure this has taken care of it and I was told a year. Is

this normal. It seems like a long time to put your life on hold to

know for sure. I know you never know for sure and it can come back

but to not know if the dose was enough seems strange to me. The

doctor is well known and seemed knowledgable but I have learned to

get second opinions so I am going to also try and contact a endo. I

will need one ayway to get me regulated on meds. Is this normal

practice or should I find someone who will do another in six months

or maybe I just need to be louder and demand it? I can't tell you

how much all of your stories help me to keep hope alive. I know that

like most of you there are days I feel like giving up and am angry

but I know there is hope out there and I would just like to tell

everyone thank you.

Sincerely,

Tonya

[Guest guest]

Tonya Merrell wrote:

> I underwent my RAI and I asked when I should come back for another

> scan to make sure this has taken care of it and I was told a year.

> Is this normal.

Tonya,

Some doctors do a scan 6 months after RAI, but many agree that it can

take a full year for the treatment to do its job. So, yes, a one-year

scan is a perfectly normal protocol. If you insist on a six-month

scan and it's clean, then you have peace of mind half a year sooner.

But if a six-month scan still shows uptake, you'll have to wait for a

one-year scan anyway. My doctor ordered both (even though my 6-month

scan was clean) with the result that I was hypo for 6 months out of 12

the year after my surgery. It wasn't fun. If I had it to do over

again, I think I'd just wait for the one-year scan.

Best of luck,

ellen

--

mailto:ellen@...

[Guest guest]

Tonya Merrell wrote:

> I underwent my RAI and I asked when I should come back for another

> scan to make sure this has taken care of it and I was told a year.

> Is this normal.

Tonya,

Some doctors do a scan 6 months after RAI, but many agree that it can

take a full year for the treatment to do its job. So, yes, a one-year

scan is a perfectly normal protocol. If you insist on a six-month

scan and it's clean, then you have peace of mind half a year sooner.

But if a six-month scan still shows uptake, you'll have to wait for a

one-year scan anyway. My doctor ordered both (even though my 6-month

scan was clean) with the result that I was hypo for 6 months out of 12

the year after my surgery. It wasn't fun. If I had it to do over

again, I think I'd just wait for the one-year scan.

Best of luck,

ellen

--

mailto:ellen@...

[Guest guest]

Tonya Merrell wrote:

> I underwent my RAI and I asked when I should come back for another

> scan to make sure this has taken care of it and I was told a year.

> Is this normal.

Tonya,

Some doctors do a scan 6 months after RAI, but many agree that it can

take a full year for the treatment to do its job. So, yes, a one-year

scan is a perfectly normal protocol. If you insist on a six-month

scan and it's clean, then you have peace of mind half a year sooner.

But if a six-month scan still shows uptake, you'll have to wait for a

one-year scan anyway. My doctor ordered both (even though my 6-month

scan was clean) with the result that I was hypo for 6 months out of 12

the year after my surgery. It wasn't fun. If I had it to do over

again, I think I'd just wait for the one-year scan.

Best of luck,

ellen

--

mailto:ellen@...

[Guest guest]

However, scanning so soon after treatment (not to be confused with scanning

within a week or so) can just alarm you unnecessarily, if you get " hot

spots " that are just cells still in the process of being killed off by the

ablative dose. That's the frustrating part of RAI ablation -- it takes TIME

for the I-131 to do its work; hanging over its shoulder (scanning too soon)

won't hurry it up any!

bj

Re: Re: questions

> Hi Tonya, I rcvd my scan 2 and 1/2 months after my radiation. I would

get a second opinion and speak up. I have had to on a number of occassions.

My neighbour had to wait a year and she found it mentally draining. Good

Luck

>

[Guest guest]

However, scanning so soon after treatment (not to be confused with scanning

within a week or so) can just alarm you unnecessarily, if you get " hot

spots " that are just cells still in the process of being killed off by the

ablative dose. That's the frustrating part of RAI ablation -- it takes TIME

for the I-131 to do its work; hanging over its shoulder (scanning too soon)

won't hurry it up any!

bj

Re: Re: questions

> Hi Tonya, I rcvd my scan 2 and 1/2 months after my radiation. I would

get a second opinion and speak up. I have had to on a number of occassions.

My neighbour had to wait a year and she found it mentally draining. Good

Luck

>

[Guest guest]

However, scanning so soon after treatment (not to be confused with scanning

within a week or so) can just alarm you unnecessarily, if you get " hot

spots " that are just cells still in the process of being killed off by the

ablative dose. That's the frustrating part of RAI ablation -- it takes TIME

for the I-131 to do its work; hanging over its shoulder (scanning too soon)

won't hurry it up any!

bj

Re: Re: questions

> Hi Tonya, I rcvd my scan 2 and 1/2 months after my radiation. I would

get a second opinion and speak up. I have had to on a number of occassions.

My neighbour had to wait a year and she found it mentally draining. Good

Luck

>

[Guest guest]

Hi Jo,

It seems to me that scanning 2-1/2 months after the radiation treatment is

awful soon. I was under the impression that there are two reasons for the

long wait (6 months to a year). The first reason is that the RAI may be

active for up to a year (and in my case, a little over a year). An early

scan may show positive but be meaningless because a later scan may be clean

even though no addition intervention occurred between the two scans.

The second reason would be stunning. Don't thyroid cells needs to get over

the first attack of a high dose of RAI before they can absorb more and glow

during a scan? In other words, it seems to me that the chances of false

negative scan would be pretty high. Giving the cells a chance to calm down

after the initial treatment would increase the chances of absorbing the low

dose used for scanning.

Of course, I'm no doctor, just a patient. So, my thoughts on how this

works could be completely off.

Betty

mailto:bettyy@...

TT: 7/00

RAI 9/00 (150 mCi)

1st Scan: 10/01 - Uncertain

2nd Scan: 8/02 - Clean!

At 12:06 AM -0500 1/24/2003, p.jdelaney wrote:

> Hi Tonya, I rcvd my scan 2 and 1/2 months after my radiation. I would

>get a second opinion and speak up. I have had to on a number of

>occassions. My neighbour had to wait a year and she found it mentally

>draining. Good Luck

>

>Jo

[Guest guest]

-

I had a D & C the day of my micarriage due to retained placenta and

then another D & C 8 weeks later because they left 10cm of placenta

inside of me.(the dr. must have gone out for coffee or something

during the first D & C).

My doctors said that they are not sure if the AS was cause by the D & C

and my uterus being so soft or from the retained placenta being

inside for 8 wks. and infection.

I would think that it was from the later because if the dr. left that

much placenta in me then she wasn't doing it very hard.

????????

I really think it could go either way for most women who have AS

because if retained placenta it really depends on how long they

retained it and if there was infection.

Hope it helps.

Deb

[Guest guest]

-

I had a D & C the day of my micarriage due to retained placenta and

then another D & C 8 weeks later because they left 10cm of placenta

inside of me.(the dr. must have gone out for coffee or something

during the first D & C).

My doctors said that they are not sure if the AS was cause by the D & C

and my uterus being so soft or from the retained placenta being

inside for 8 wks. and infection.

I would think that it was from the later because if the dr. left that

much placenta in me then she wasn't doing it very hard.

????????

I really think it could go either way for most women who have AS

because if retained placenta it really depends on how long they

retained it and if there was infection.

Hope it helps.

Deb

[Guest guest]

-

I had a D & C the day of my micarriage due to retained placenta and

then another D & C 8 weeks later because they left 10cm of placenta

inside of me.(the dr. must have gone out for coffee or something

during the first D & C).

My doctors said that they are not sure if the AS was cause by the D & C

and my uterus being so soft or from the retained placenta being

inside for 8 wks. and infection.

I would think that it was from the later because if the dr. left that

much placenta in me then she wasn't doing it very hard.

????????

I really think it could go either way for most women who have AS

because if retained placenta it really depends on how long they

retained it and if there was infection.

Hope it helps.

Deb

[Guest guest]

,

I had my D & C four weeks after giving birth and the reason I had the

D & C was due to massive hemorrahge, infection and retained placenta.

The doctor never mentioned retained placenta until after the

procedure and I never even knew it was a possibility. I ended up

having a blood transfusion as well which made the whole ordeal more

complicated and I was extremely ill due to sepsis (infection of the

blood) as well.

I do not know if the time frame of the D & C makes a huge difference or

if there is any relationship either. I do know that because a uterus

is very fragile and soft after a recent pregnancy, it does make it

more difficult to perform a D & C, especially the force with which one

is performed. If a person had a miscarriage, abortion or gave birth,

the uterus would still be soft and more difficult to work on. This

also makes it more likely to have scar tissue build-up. I hope this

helps in some way.

W

[Guest guest]

HI ,

I just so happen know the answer to the capsular invasion question

b/c it's on my pathology report also. I asked the surgeon and he

said that every tumor is surrounded by a capsule or like an outer

layer (think in terms of a circle). Capsular invasion means that

some of the cells from inside the tumor have gotten through that

outer layer. It doesn't mean that it was cancerous cells. I don't

know what extending sub-sternally means. I hope I was able to help

you somewhat. Good luck with everything.

Take care,

Joanne

Long Island, NY

follicular thyca, 1.8cm (discovered after PT)

PT 7/24/02

TT completion 9/18/02

RAI 100mci 10/22/02

currently on 175mcg levoxyl

> Hello again,

>

> I was just reading through some more of my reports that I received

in the

> mail. I came across some things that I'm just not sure about and

was

> wondering if anyone could help. What is capsular invasion? What

does it

> mean... extending sub-sternally? Just wondering if anyone can

help. Thanks

> a million!

>

> Take care!

>

> land

>

> *Currently on LID to go for WBS February 14th.

> *Pathology report for biopsy that was done on my knee...benign!!

> *Thyroid Ultrasound (June 01) 6 nodules found; 3 on right and 3 on

left

> *Uptake Scan (end June 01) nodules found to be solid

> *FNB (October 01) suspicious for cancer

> *TT (Dec 01) papillary cancer, spreading to lymph nodes in neck and

muscle

> *155 mCi RAI (Jan 02)

> *Levoxyl-175mcg (Mon.-Friday); 200 mcg (Sat. & Sun.)

>

>

>

[Guest guest]

HI ,

I just so happen know the answer to the capsular invasion question

b/c it's on my pathology report also. I asked the surgeon and he

said that every tumor is surrounded by a capsule or like an outer

layer (think in terms of a circle). Capsular invasion means that

some of the cells from inside the tumor have gotten through that

outer layer. It doesn't mean that it was cancerous cells. I don't

know what extending sub-sternally means. I hope I was able to help

you somewhat. Good luck with everything.

Take care,

Joanne

Long Island, NY

follicular thyca, 1.8cm (discovered after PT)

PT 7/24/02

TT completion 9/18/02

RAI 100mci 10/22/02

currently on 175mcg levoxyl

> Hello again,

>

> I was just reading through some more of my reports that I received

in the

> mail. I came across some things that I'm just not sure about and

was

> wondering if anyone could help. What is capsular invasion? What

does it

> mean... extending sub-sternally? Just wondering if anyone can

help. Thanks

> a million!

>

> Take care!

>

> land

>

> *Currently on LID to go for WBS February 14th.

> *Pathology report for biopsy that was done on my knee...benign!!

> *Thyroid Ultrasound (June 01) 6 nodules found; 3 on right and 3 on

left

> *Uptake Scan (end June 01) nodules found to be solid

> *FNB (October 01) suspicious for cancer

> *TT (Dec 01) papillary cancer, spreading to lymph nodes in neck and

muscle

> *155 mCi RAI (Jan 02)

> *Levoxyl-175mcg (Mon.-Friday); 200 mcg (Sat. & Sun.)

>

>

>

[Guest guest]

HI ,

I just so happen know the answer to the capsular invasion question

b/c it's on my pathology report also. I asked the surgeon and he

said that every tumor is surrounded by a capsule or like an outer

layer (think in terms of a circle). Capsular invasion means that

some of the cells from inside the tumor have gotten through that

outer layer. It doesn't mean that it was cancerous cells. I don't

know what extending sub-sternally means. I hope I was able to help

you somewhat. Good luck with everything.

Take care,

Joanne

Long Island, NY

follicular thyca, 1.8cm (discovered after PT)

PT 7/24/02

TT completion 9/18/02

RAI 100mci 10/22/02

currently on 175mcg levoxyl

> Hello again,

>

> I was just reading through some more of my reports that I received

in the

> mail. I came across some things that I'm just not sure about and

was

> wondering if anyone could help. What is capsular invasion? What

does it

> mean... extending sub-sternally? Just wondering if anyone can

help. Thanks

> a million!

>

> Take care!

>

> land

>

> *Currently on LID to go for WBS February 14th.

> *Pathology report for biopsy that was done on my knee...benign!!

> *Thyroid Ultrasound (June 01) 6 nodules found; 3 on right and 3 on

left

> *Uptake Scan (end June 01) nodules found to be solid

> *FNB (October 01) suspicious for cancer

> *TT (Dec 01) papillary cancer, spreading to lymph nodes in neck and

muscle

> *155 mCi RAI (Jan 02)

> *Levoxyl-175mcg (Mon.-Friday); 200 mcg (Sat. & Sun.)

>

>

>

[Guest guest]

Hello Friends!!

I just wanted to take a minute to say thank you to all of you that helped me

with answers to my questions that I asked. You all were very helpful and

your help was greatly appreciated!! I also want to thank each and everyone

of you for all your help, support, encouragement, and care that you have

shown to me since I because a member of this group a couple of months ago.

Thanks for helping me realize that my questions are not silly or stupid, nor

do I have to apologize for asking. My prayers go out to each of you that is

facing surgery, treatment, etc., as well as to those of you that have had

successful clean scans and are stable on your thyroid meds. I can't thank

you all enough!

Take care!

land

Caringind@...

*Currently on LID to go for WBS February 14th.

*Pathology report for biopsy that was done on my knee...benign!!

*Thyroid Ultrasound (June 01) 6 nodules found; 3 on right and 3 on left

*Uptake Scan (end June 01) nodules found to be solid

*FNB (October 01) suspicious for cancer

*TT (Dec 01) papillary cancer, spreading to lymph nodes in neck and muscle

*155 mCi RAI (Jan 02)

*Levoxyl-175mcg (Mon.-Friday); 200 mcg (Sat. & Sun.)

[Guest guest]

>

> ...(snip)...What does it mean... extending sub-sternally?

Hi ,

I didn't see this part of your question answered before. Could it be

that your thyroid extended down into your chest? This is not uncomon

apparently, there's an explanation of sub-sternal thyroid at:

http://www.endocrineweb.com/sternal.html

Hope this helps,

Judith (British, living in Holland)

dx 1965 pap thyca T4-N1-M0

pt 1965 (London, England)

tt + rai 1982 (Alkmaar and Leiden, The Netherlands)

[Guest guest]

Pat

> Going more hypo for the second but ok.

> 1.-Are beets ok for the LID???

Yes

> 2.-Somebody told me that if you let the water (the regular

> one) " rest " for a while the flourine will go away...is it true???

No. But fluorine is not a LID issue.

I love the idea of 'thypos', presumably short for 'thyca hypo typos'. Another

candidate for the list of abbreviations, I think. (Why is 'abbreviation' such

a long word?).

Ian

> 3.-I'm having a VERY VERY difficult time typing...I have to go over

> and over a frase before I send it...'cos all the " thypos " ...is it

> part of the " fun " of beeing hypo???.

> 4.- I'm feeling happy like many months ago before this nightmare

> start...is it because I'm gettin close to my RAI and therefore

> seeign the " end on the tunnel " ??? (I hope soo.....), or there is

> something in my hormones that are making me feel kind of funny???,

> btw...the family is enjoing my " new self " ...after so many weeks of

> bad mood and short temper...

> Tks for all your imput...

> Pat

>

> PT Nov/02(foll/var pap 3.5cm.)

> TT Jan/03

> Cyt 25 till sunday...

> RAI 03/17/03.....YYYEEEAAA!!!!!!!!!!!

>

>

>

> This e-mail support group is one of many free services of ThyCa: Thyroid

Cancer Survivors' Association, Inc. <web site: www.thyca.org>. If you do not

wish to belong to this group, you may UNSUBSCRIBE by

> sending a blank e-mail to:

> thyca-unsubscribe

>

>

>

[Guest guest]

Sue,

It is definately worth trying again. You're right, all those meds on board

never really gave her a chance to see if the diet would help.

Rhonda (mom to Shan, age 8, keto kid for 17 months)

Hello everyone

I have not posted in quite awhile. But to refresh everyone memory I have

a daughter who is now 10 and has had intractable Epilepsy since 11 months

old. Back in Jan we started the Keto diet. She was also on 4 meds,

Lamictal, Topamax, Clorazapate, and Keppra and she also has the VNS implant.

By March she was doing really bad with everything, Lots and lots of

seizures and she was just a zombie, and her blood pressure went really low

and her circulation to her lower extremities was really bad. So I pushed to

stop the diet and in a few days as her keytone levels went down she got to

feeling better. Now my biggest question is this. When she started the diet

we didn't start to wean any meds. She was on 2365 mgs of the meds. 2000

keppra a day 15mgs of clorazapate 250mgs of topamax, and 200 lamictal.

When we stoped the diet we started Felbatol and now we are weaning the

keppra lamictal, topamax and clorazapate and then once we are done we are

going to start Phenobarbital. Now I

am thinking and was thinking at the time that the meds and the diet were

clashing with each other. Such high doses and then the diet made her toxic

I really think that is what happened. SO I am thinking of trying the diet

again once we get the meds weaned out.

Does anyone else think this could be the reason the diet failed. I don't

want to pass up the opportunity to try it again off of most of the meds and

see if if works. If the same things happen then we will know it was just

her body that didn't accept it but I don't want to go on with out knowing

for sure.

Hope this was not to confusing.

Sue

[Guest guest]

Sue,

It is definately worth trying again. You're right, all those meds on board

never really gave her a chance to see if the diet would help.

Rhonda (mom to Shan, age 8, keto kid for 17 months)

Hello everyone

I have not posted in quite awhile. But to refresh everyone memory I have

a daughter who is now 10 and has had intractable Epilepsy since 11 months

old. Back in Jan we started the Keto diet. She was also on 4 meds,

Lamictal, Topamax, Clorazapate, and Keppra and she also has the VNS implant.

By March she was doing really bad with everything, Lots and lots of

seizures and she was just a zombie, and her blood pressure went really low

and her circulation to her lower extremities was really bad. So I pushed to

stop the diet and in a few days as her keytone levels went down she got to

feeling better. Now my biggest question is this. When she started the diet

we didn't start to wean any meds. She was on 2365 mgs of the meds. 2000

keppra a day 15mgs of clorazapate 250mgs of topamax, and 200 lamictal.

When we stoped the diet we started Felbatol and now we are weaning the

keppra lamictal, topamax and clorazapate and then once we are done we are

going to start Phenobarbital. Now I

am thinking and was thinking at the time that the meds and the diet were

clashing with each other. Such high doses and then the diet made her toxic

I really think that is what happened. SO I am thinking of trying the diet

again once we get the meds weaned out.

Does anyone else think this could be the reason the diet failed. I don't

want to pass up the opportunity to try it again off of most of the meds and

see if if works. If the same things happen then we will know it was just

her body that didn't accept it but I don't want to go on with out knowing

for sure.

Hope this was not to confusing.

Sue

[Guest guest]

Sue,

It is definately worth trying again. You're right, all those meds on board

never really gave her a chance to see if the diet would help.

Rhonda (mom to Shan, age 8, keto kid for 17 months)

Hello everyone

I have not posted in quite awhile. But to refresh everyone memory I have

a daughter who is now 10 and has had intractable Epilepsy since 11 months

old. Back in Jan we started the Keto diet. She was also on 4 meds,

Lamictal, Topamax, Clorazapate, and Keppra and she also has the VNS implant.

By March she was doing really bad with everything, Lots and lots of

seizures and she was just a zombie, and her blood pressure went really low

and her circulation to her lower extremities was really bad. So I pushed to

stop the diet and in a few days as her keytone levels went down she got to

feeling better. Now my biggest question is this. When she started the diet

we didn't start to wean any meds. She was on 2365 mgs of the meds. 2000

keppra a day 15mgs of clorazapate 250mgs of topamax, and 200 lamictal.

When we stoped the diet we started Felbatol and now we are weaning the

keppra lamictal, topamax and clorazapate and then once we are done we are

going to start Phenobarbital. Now I

am thinking and was thinking at the time that the meds and the diet were

clashing with each other. Such high doses and then the diet made her toxic

I really think that is what happened. SO I am thinking of trying the diet

again once we get the meds weaned out.

Does anyone else think this could be the reason the diet failed. I don't

want to pass up the opportunity to try it again off of most of the meds and

see if if works. If the same things happen then we will know it was just

her body that didn't accept it but I don't want to go on with out knowing

for sure.

Hope this was not to confusing.

Sue

[Guest guest]

Hi Sue....... YES, I think it's very likely that you're instincts are dead on!

Maybe she could start again at a lower ratio and work up from there? You must be

thrilled to get these meds out of the way. What a cocktail she's been on!

Patti

----- Original Message -----

From: susan barothy

Now I

am thinking and was thinking at the time that the meds and the diet were

clashing with each other. Such high doses and then the diet made her toxic I

really think that is what happened. SO I am thinking of trying the diet again

once we get the meds weaned out.

Does anyone else think this could be the reason the diet failed.