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Well after fighting the desire for sweets today I gave in and finished a

box of cookies after lunch (they were left over from something a class

had in the library) I feel like kicking myself in the rear. I am

planning to go back on induction tomorrow but for tonight am not going

to eat anything with sugar or flour in it. Still have to have supper.

grrrrrrrrr I don't know what the heck is wrong with me. this food has

been calling and calling me.

B

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-

Do you drink or use things with artificial sweeteners in them? If so,

maybe the sweet taste is keeping your sweet cravings primed.

Zoe

>

>

>Well after fighting the desire for sweets today I gave in and finished a

>box of cookies after lunch (they were left over from something a class

>had in the library) I feel like kicking myself in the rear. I am

>planning to go back on induction tomorrow but for tonight am not going

>to eat anything with sugar or flour in it. Still have to have supper.

>grrrrrrrrr I don't know what the heck is wrong with me. this food has

>been calling and calling me.

>

Zoe Sodja

Document Publishing & Editing Center

UC Santa Cruz

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Ahhh Penny, that is just like you! Thanks for that encouragement. It

*does* help believe it or not. I am back on induction today except I am

not giving up the caffeine. Some of us on another Atkins list have

decided to re-do induction together so that is a help.

B

> ,

>

> Aww don't worry, you just get right back on this WOL and you'll be fine,

> maybe you didn't have enough to get you out of ketosis!!

>

> Hugs

> Penny---Ohio

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  • 9 years later...

Enid, Estrogen can really mess with your liver. I couldnt take it in even the

smallest dose after my hysterectomy two years ago. Every cycle before that, I

would get sicker. That was the main reason for the hyst. I think we have all had

periods of the night sweats and chills. There have been times when I had

low-grade fevers all they time. I would really check into the Estrogen use. I

don't know what other woman have done. But we did all talk about how we all got

sicker during our cycles a few years ago. It also sounds like the doctors are

brushing you off. There is medications for nausea and for pain. I wish I coudl

tell you how to make your doctor believe how bad your quality of lilfe is. I've

chased off more doctors than I'd like to admit. I don't wear it as a bagde of

honor. I figure I better find a new approach. I'm running out of options. Oh btw

never start a conversation with your doctor with, " I read on the Internet. . . "

Hope that helps a little, Cheryl ID 50 psc, uc

Not doing too well

> Hello all,

> I have read most of the messages since joining last week, and have to

> admit learned more than I could have ever gleaned out of the many

> doctors I have seen.

>

> I went to see a Hep doc in San Francisco back in January. I was

> actually feeling better; the nausea was minimal, the pain was down,

> and the fatigue was better. When I returned home to New Mexico, all

> my symptoms came back and then some. Lately I've been getting

> extreme hot flashes followed by intense chills lasting sometimes for

> hours. I increased my compounded estrogen cream but it didn't help.

> I am up to four times the dose and still no help. I'm getting severe

> pain on the right side of my abdomen when I eat and then intense

> nausea.

>

> All the doctors I have seen just tell me that I will get sicker and

> then need a transplant. They didn't bother to say that the PSC would

> be causing any of my symptoms. Have any of you experienced the hot

> flashes followed by the chills? Could really use some help here.

>

> Thanks,

> Enid in NM

>

>

>

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Enid, Estrogen can really mess with your liver. I couldnt take it in even the

smallest dose after my hysterectomy two years ago. Every cycle before that, I

would get sicker. That was the main reason for the hyst. I think we have all had

periods of the night sweats and chills. There have been times when I had

low-grade fevers all they time. I would really check into the Estrogen use. I

don't know what other woman have done. But we did all talk about how we all got

sicker during our cycles a few years ago. It also sounds like the doctors are

brushing you off. There is medications for nausea and for pain. I wish I coudl

tell you how to make your doctor believe how bad your quality of lilfe is. I've

chased off more doctors than I'd like to admit. I don't wear it as a bagde of

honor. I figure I better find a new approach. I'm running out of options. Oh btw

never start a conversation with your doctor with, " I read on the Internet. . . "

Hope that helps a little, Cheryl ID 50 psc, uc

Not doing too well

> Hello all,

> I have read most of the messages since joining last week, and have to

> admit learned more than I could have ever gleaned out of the many

> doctors I have seen.

>

> I went to see a Hep doc in San Francisco back in January. I was

> actually feeling better; the nausea was minimal, the pain was down,

> and the fatigue was better. When I returned home to New Mexico, all

> my symptoms came back and then some. Lately I've been getting

> extreme hot flashes followed by intense chills lasting sometimes for

> hours. I increased my compounded estrogen cream but it didn't help.

> I am up to four times the dose and still no help. I'm getting severe

> pain on the right side of my abdomen when I eat and then intense

> nausea.

>

> All the doctors I have seen just tell me that I will get sicker and

> then need a transplant. They didn't bother to say that the PSC would

> be causing any of my symptoms. Have any of you experienced the hot

> flashes followed by the chills? Could really use some help here.

>

> Thanks,

> Enid in NM

>

>

>

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Enid, Estrogen can really mess with your liver. I couldnt take it in even the

smallest dose after my hysterectomy two years ago. Every cycle before that, I

would get sicker. That was the main reason for the hyst. I think we have all had

periods of the night sweats and chills. There have been times when I had

low-grade fevers all they time. I would really check into the Estrogen use. I

don't know what other woman have done. But we did all talk about how we all got

sicker during our cycles a few years ago. It also sounds like the doctors are

brushing you off. There is medications for nausea and for pain. I wish I coudl

tell you how to make your doctor believe how bad your quality of lilfe is. I've

chased off more doctors than I'd like to admit. I don't wear it as a bagde of

honor. I figure I better find a new approach. I'm running out of options. Oh btw

never start a conversation with your doctor with, " I read on the Internet. . . "

Hope that helps a little, Cheryl ID 50 psc, uc

Not doing too well

> Hello all,

> I have read most of the messages since joining last week, and have to

> admit learned more than I could have ever gleaned out of the many

> doctors I have seen.

>

> I went to see a Hep doc in San Francisco back in January. I was

> actually feeling better; the nausea was minimal, the pain was down,

> and the fatigue was better. When I returned home to New Mexico, all

> my symptoms came back and then some. Lately I've been getting

> extreme hot flashes followed by intense chills lasting sometimes for

> hours. I increased my compounded estrogen cream but it didn't help.

> I am up to four times the dose and still no help. I'm getting severe

> pain on the right side of my abdomen when I eat and then intense

> nausea.

>

> All the doctors I have seen just tell me that I will get sicker and

> then need a transplant. They didn't bother to say that the PSC would

> be causing any of my symptoms. Have any of you experienced the hot

> flashes followed by the chills? Could really use some help here.

>

> Thanks,

> Enid in NM

>

>

>

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With the really bad ones, I got chills – fever went up to 102 or

103 at the drop of a hat. Every joint hurt. No appetite, not a lot of abdominal

pain but nausea. And I couldn’t keep my eyes open. Would literally sleep 20

hours a day.

From:

[mailto: ] On Behalf

Of Joe Berry

At least

in my case, my fever spiked, I had chills, I ached all over, my upper abdomen

hurt much more than usual, I couldn’t eat due to nausea and I was

fatigued. Your symptoms may be different, but unfortunately I think they

will be worse than they are now.

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With the really bad ones, I got chills – fever went up to 102 or

103 at the drop of a hat. Every joint hurt. No appetite, not a lot of abdominal

pain but nausea. And I couldn’t keep my eyes open. Would literally sleep 20

hours a day.

From:

[mailto: ] On Behalf

Of Joe Berry

At least

in my case, my fever spiked, I had chills, I ached all over, my upper abdomen

hurt much more than usual, I couldn’t eat due to nausea and I was

fatigued. Your symptoms may be different, but unfortunately I think they

will be worse than they are now.

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With the really bad ones, I got chills – fever went up to 102 or

103 at the drop of a hat. Every joint hurt. No appetite, not a lot of abdominal

pain but nausea. And I couldn’t keep my eyes open. Would literally sleep 20

hours a day.

From:

[mailto: ] On Behalf

Of Joe Berry

At least

in my case, my fever spiked, I had chills, I ached all over, my upper abdomen

hurt much more than usual, I couldn’t eat due to nausea and I was

fatigued. Your symptoms may be different, but unfortunately I think they

will be worse than they are now.

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Enid.

That sound so familiar! I mean San Francisco. I don't know who you saw, but i do see a hepatologist, over there [Dr. Bass], Head of that department, from time time. I also do my ERCP's, at that hospital. And the Gi who do them is actually, an expert.

You did get some good replies from other members. I do tend to get chills, every few days, too. And accompanied by a low grade fever, some times. And when my temp rise above 100F, i would start on Cipro. i do have an open prescription, at home. But since you are all new to this, i think you should seek the ER, if you get a 101, temperature and take an antibiotic. Myself, i would take Cipro even if it is between 100 and 101 temp]. Other times, i would wait a little more. Plus you would let your doctor, knows. I also experience hot flashes, some times. But not necessarily with chills. And as cheryl said, they can mess up your liver. When i was in the High Dose Urso Study with the Mayo Clinic, and i was prescribed a patch by my gynecologist, the study doctor stopped it for me and he did not recommended it even out of the study. The pain is a disease symptom and it varies from one patient to another in

the degree of intensity, occurence-----etc. Mine is intense and very bothersome on some days, and lower on others. Your doctor can prescribe you some meds. I am currently on Nortriptyline 30mg, but because i do not want to go higher on the dose, my doctor has in addition suggested acupuncture, too. And i do add my voice in telling you to not to stop looking for answers from your doctors and also not to let them put aside your symptoms and how you feel. Myself, i did learn a good deal, too, from our group, in spite of an early non-stop search. Actually, if you do look through the archive, you would be amazed of how much information, you can find.

I do hope that you will feel much better, soon. But again, in the mean time, please seek help, and do not delay. Later, you will somehow learn how to manage some of those side effects, and when to seek immediate assistance.

Psc/UC

Subject: Not doing too wellTo: Date: Wednesday, February 25, 2009, 11:06 PM

Hello all,I have read most of the messages since joining last week, and have to admit learned more than I could have ever gleaned out of the many doctors I have seen.I went to see a Hep doc in San Francisco back in January. I was actually feeling better; the nausea was minimal, the pain was down, and the fatigue was better. When I returned home to New Mexico, all my symptoms came back and then some. Lately I've been getting extreme hot flashes followed by intense chills lasting sometimes for hours. I increased my compounded estrogen cream but it didn't help. I am up to four times the dose and still no help. I'm getting severe pain on the right side of my abdomen when I eat and then intense nausea. All the doctors I have seen just tell me that I will get sicker and then need a transplant. They didn't bother to say that the PSC would be causing any of my symptoms. Have any of you

experienced the hot flashes followed by the chills? Could really use some help here.Thanks,Enid in NM

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Enid,

I have not had any of the symptoms you mentioned, except hot flashes, and those

were

definitely caused by menopause.

I am on a very low-dose estrogen patch (which has completely eliminated the hot

flashes),

and that was approved by my Hep, as long as my LFTs are monitored every 3

months. If

there is any sign of the LFTs steadily increasing, I will have to go off the

patch.

There is a big difference between orally taken estrogen, which must be processed

by the

liver, and topically applied estrogen, like you (and I) are taking, which

largely bi-passes

the liver. However, you still need to be monitored very closely while you are

taking it. It

wasn't clear to me from your post whether you increased your estrogen under the

advice

and care of a doctor, or on your own. But it could be very dangerous to

increase it 4x

without a doctor's supervision.

Are the docs that are telling you that you will just get sicker and sicker liver

specialists? It

sounds like you might need to look for a specialist who will listen to you and

be more

understanding. You definitely should not just accept the symptoms you are

having.

I hope you can find some help and are feeling better soon.

Debbie

>

> Hello all,

> I have read most of the messages since joining last week, and have to

> admit learned more than I could have ever gleaned out of the many

> doctors I have seen.

>

> I went to see a Hep doc in San Francisco back in January. I was

> actually feeling better; the nausea was minimal, the pain was down,

> and the fatigue was better. When I returned home to New Mexico, all

> my symptoms came back and then some. Lately I've been getting

> extreme hot flashes followed by intense chills lasting sometimes for

> hours. I increased my compounded estrogen cream but it didn't help.

> I am up to four times the dose and still no help. I'm getting severe

> pain on the right side of my abdomen when I eat and then intense

> nausea.

>

> All the doctors I have seen just tell me that I will get sicker and

> then need a transplant. They didn't bother to say that the PSC would

> be causing any of my symptoms. Have any of you experienced the hot

> flashes followed by the chills? Could really use some help here.

>

> Thanks,

> Enid in NM

>

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Enid,

I have not had any of the symptoms you mentioned, except hot flashes, and those

were

definitely caused by menopause.

I am on a very low-dose estrogen patch (which has completely eliminated the hot

flashes),

and that was approved by my Hep, as long as my LFTs are monitored every 3

months. If

there is any sign of the LFTs steadily increasing, I will have to go off the

patch.

There is a big difference between orally taken estrogen, which must be processed

by the

liver, and topically applied estrogen, like you (and I) are taking, which

largely bi-passes

the liver. However, you still need to be monitored very closely while you are

taking it. It

wasn't clear to me from your post whether you increased your estrogen under the

advice

and care of a doctor, or on your own. But it could be very dangerous to

increase it 4x

without a doctor's supervision.

Are the docs that are telling you that you will just get sicker and sicker liver

specialists? It

sounds like you might need to look for a specialist who will listen to you and

be more

understanding. You definitely should not just accept the symptoms you are

having.

I hope you can find some help and are feeling better soon.

Debbie

>

> Hello all,

> I have read most of the messages since joining last week, and have to

> admit learned more than I could have ever gleaned out of the many

> doctors I have seen.

>

> I went to see a Hep doc in San Francisco back in January. I was

> actually feeling better; the nausea was minimal, the pain was down,

> and the fatigue was better. When I returned home to New Mexico, all

> my symptoms came back and then some. Lately I've been getting

> extreme hot flashes followed by intense chills lasting sometimes for

> hours. I increased my compounded estrogen cream but it didn't help.

> I am up to four times the dose and still no help. I'm getting severe

> pain on the right side of my abdomen when I eat and then intense

> nausea.

>

> All the doctors I have seen just tell me that I will get sicker and

> then need a transplant. They didn't bother to say that the PSC would

> be causing any of my symptoms. Have any of you experienced the hot

> flashes followed by the chills? Could really use some help here.

>

> Thanks,

> Enid in NM

>

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Cheryl,

Hi! I'm a bit confused by what you wrote. Could you clarify it for me? You

said that you're normally a 97.6 but that if you go to 95 you're put on meds.

But then you said if you're at 100 he/she also wants you on medicine. Does this

mean that your temperature also drops lower as well as running fevers? I know

mine is normally a 96.8 so my doc wants me to count it by degrees, like if I'm a

97.8 that would equal 99.6, etc. Using that theory, they have me medicate when

my temperature would equal what would normally be 100 degrees for other

patients. Does that make sense?

Thanks!

Sandi in VA

My Doctor said that a fever of 100....in my case I run a

> 97.6 normal temp. so he said if it gets to 95 then I should

> be on meds......

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Cheryl,

Hi! I'm a bit confused by what you wrote. Could you clarify it for me? You

said that you're normally a 97.6 but that if you go to 95 you're put on meds.

But then you said if you're at 100 he/she also wants you on medicine. Does this

mean that your temperature also drops lower as well as running fevers? I know

mine is normally a 96.8 so my doc wants me to count it by degrees, like if I'm a

97.8 that would equal 99.6, etc. Using that theory, they have me medicate when

my temperature would equal what would normally be 100 degrees for other

patients. Does that make sense?

Thanks!

Sandi in VA

My Doctor said that a fever of 100....in my case I run a

> 97.6 normal temp. so he said if it gets to 95 then I should

> be on meds......

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Cheryl,

Hi! I'm a bit confused by what you wrote. Could you clarify it for me? You

said that you're normally a 97.6 but that if you go to 95 you're put on meds.

But then you said if you're at 100 he/she also wants you on medicine. Does this

mean that your temperature also drops lower as well as running fevers? I know

mine is normally a 96.8 so my doc wants me to count it by degrees, like if I'm a

97.8 that would equal 99.6, etc. Using that theory, they have me medicate when

my temperature would equal what would normally be 100 degrees for other

patients. Does that make sense?

Thanks!

Sandi in VA

My Doctor said that a fever of 100....in my case I run a

> 97.6 normal temp. so he said if it gets to 95 then I should

> be on meds......

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Sandi,

Good Morning. I was going through messages this morning, and yours really popped out at me. Before my laser surgery in '05 my temperature ran be around 97.5. After I had a transfusion on 6/26/05 my temp elevated to 99.0 and above and stayed there everyday for three and a half years. My symptoms of Graves disease and PSC started then also. Finally in Oct. '08 my temp came down to 98.6 so was decarled normal. I still feel feverish all the time, but of course doctors think I'm nuts. I have proof of temp. and would like to know how your doctor was able to determine your fevers by degree from the 97.6 mark. Most doctors feel that as long as a person is 98.6 or close to that there is no fever. Let me know?

Enid

To: Sent: Friday, February 27, 2009 7:28:25 PMSubject: Re: Re: Not doing too well

Cheryl,Hi! I'm a bit confused by what you wrote. Could you clarify it for me? You said that you're normally a 97.6 but that if you go to 95 you're put on meds. But then you said if you're at 100 he/she also wants you on medicine. Does this mean that your temperature also drops lower as well as running fevers? I know mine is normally a 96.8 so my doc wants me to count it by degrees, like if I'm a 97.8 that would equal 99.6, etc. Using that theory, they have me medicate when my temperature would equal what would normally be 100 degrees for other patients. Does that make sense?Thanks!Sandi in VAMy Doctor said that a fever of 100....in my case I run a> 97.6 normal temp. so he said if it gets to 95 then I should> be on

meds......

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Sandi,

Good Morning. I was going through messages this morning, and yours really popped out at me. Before my laser surgery in '05 my temperature ran be around 97.5. After I had a transfusion on 6/26/05 my temp elevated to 99.0 and above and stayed there everyday for three and a half years. My symptoms of Graves disease and PSC started then also. Finally in Oct. '08 my temp came down to 98.6 so was decarled normal. I still feel feverish all the time, but of course doctors think I'm nuts. I have proof of temp. and would like to know how your doctor was able to determine your fevers by degree from the 97.6 mark. Most doctors feel that as long as a person is 98.6 or close to that there is no fever. Let me know?

Enid

To: Sent: Friday, February 27, 2009 7:28:25 PMSubject: Re: Re: Not doing too well

Cheryl,Hi! I'm a bit confused by what you wrote. Could you clarify it for me? You said that you're normally a 97.6 but that if you go to 95 you're put on meds. But then you said if you're at 100 he/she also wants you on medicine. Does this mean that your temperature also drops lower as well as running fevers? I know mine is normally a 96.8 so my doc wants me to count it by degrees, like if I'm a 97.8 that would equal 99.6, etc. Using that theory, they have me medicate when my temperature would equal what would normally be 100 degrees for other patients. Does that make sense?Thanks!Sandi in VAMy Doctor said that a fever of 100....in my case I run a> 97.6 normal temp. so he said if it gets to 95 then I should> be on

meds......

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