question about PSC and diagnosis

April 4, 2008

Okay, hello all ~ I have been reading the post the last couple of

days and finally decided to post

This is kinda long - sorry --

I was used to give blood at our employer sponsored blood drive every

year - well about 12 years I got a letter from the blood blank saying

that they could not take my blood due to high liver enzyme levels - I

mentioned this to my then primary doctor and to the other doctors

over the years -

then about 7 years ago - I kept getting diarrhea - and it had an

awful smell - well the first doctor I went to told me it was my

gallbladder - ( this was before he even looked me over or did any

test - he had me set up with a surgeon) - I did go in for the

ultrasound they did find one or two small gallstones - but

nothing.... I decide that I better get a second opinion - and go

ahead and make the long drive back to my original primary care

doctor... I did and he sent me to a GI and the GI told me it sounded

like UC but to make sure I needed to do a colonoscopy, I did and he

conformed to me that I did have UC and put me on meds... all seemed

to balance out and I stopped taking the meds - I KNOW A BIG NO NO

but I want to tell the story how it happened.

All was good until I got pregnant about 5 years ago, we lost the

first baby, but then 3 months later tried again and now we have a

VERY busy 4 year old, ALL WAS STILL GREAT UNTILL after I gave birth

and then the UC came back with a vengeance. This time I got very

sick - no hospital stay but dropped 100 lbs and lost a bunch of

blood. Ended up seeing a new GI he put me on meds - this time they

did not work as well but I was trying - the steroids did seem to

help, I was not comfortable with the GI so decided to find a new

doctor.

The day I went to see him,, I went for my yearly visit with my

OBGYN - and he found a lump in my neck - so he sent me to an

Endocrinology doctor - the tried to do a biopsy on it but the lump

was so hard it would not - they did get a few cells - and they looked

odd - so he told me the best thing to do would be to remove it. It

was in my thyroid.

The big lump ended up to be nothing - but behind it was one that was

only 5 mm in size that was cancer - but do the size just removing it

was all that I needed no radiation etc.

YEA!! he had me start taking a thyroid tablet every day after they

removed it. SINCE then my UC problems have stopped.

The day I had seen the new GI he set me up for a new colonoscopy - I

went, it looked inflamed, he put me on meds, -- THEY were not

helping -so it was hard to take them. but I was - All of these

doctors I told about the high liver enzyme - no one seem to get that

excited about it but this last doctor started telling me that it was

PSC and wanted to do the ERCP but wanted to wait until after all of

my thyroid issues were cleared up - he did send me for a blood work

up that day and yes the LET's did come back high -

well I did go back and see the GI after the Thyroid was all healed

up - I told him that day that I bet the liver enzymes would be lower

because my UC seemed to have went away - I was trying to take the UC

meds but not doing good at getting all of the pills down each day -

and the liver test did come back lower - so he wanted to wait and see.

I went back about 3 weeks ago for the follow up and he did another

blood test and it came back sky high - BUT I had started drinking

several glasses of red wine every night - it did not faze me - and

looking back I was drinking more than I should have - but hind sight

is 20 / 20 - I told the doctor about the amount of wine I had been

drinking he said that it would not affect the liver enzyme test - so

I went ahead and agreed to do the ERCP - I did that last Monday the

31st and still have heard nothing back - the day of the test the

doctor in his office told my husband yes she does have PSC but he

wanted to talk to my GI about my gallstones - that my liver did have

some affect. that is all my husband got out of the conversation - I

called both doctors office the next day and left messages - finally

heard back from the doctors office that did the procedure - they told

me I needed to call my doctor - which I already had - so I called

again Wednesday - and left a message with the nurse. She told me

they were not the ones that did the test - I told her I knew that and

the other doctor told me to leave a message for him - ( now remember

they are all in the same office) - but she did mention the notes from

the doctor that did the ERCP and my gallbladder. I left a message

with the questions I had -

now it is Friday - still no call - so I left another message.

It seems that since he was so pushy for me to have this test done and

I did have the damage that someone would call me back - I also dont

understand why they did not go ahead an do another blood test.

I have none of the symptoms - and since the thyroid surgery my UC is

doing great - the only time I have diarrhea is when I take the UC

meds - I mentioned that to the doctor and he did not say anything to

me other than I need to take the medicine - that seems to be a bad

idea if it makes me have d.

Please let me know what you think. I have called my primary to see

if he would go over my records and tell me what he thinks of all of

it.

Billie Jo

Oklahoma

April 4, 2008

The doctor who did your ERCP owes you follow up appointment as part

of your procedure. That is what professionals do. I would call that

doctor ask to speak to his nurse and get an appointment scheduled.

You should hear the results from the doctor who did the test He is

the GI it is his field of specialty.

When I had my ERCP the doctor discussed what he saw immediatly with

my husband and than saw us in his office a couple of days later, than

he sent me for a liver biopsy within the week.

PSC 5/07 Listed

>

> Okay, hello all ~ I have been reading the post the last couple of

> days and finally decided to post

>

> This is kinda long - sorry --

> I was used to give blood at our employer sponsored blood drive

every

> year - well about 12 years I got a letter from the blood blank

saying

> that they could not take my blood due to high liver enzyme levels -

I

> mentioned this to my then primary doctor and to the other doctors

> over the years -

> then about 7 years ago - I kept getting diarrhea - and it had an

> awful smell - well the first doctor I went to told me it was my

> gallbladder - ( this was before he even looked me over or did any

> test - he had me set up with a surgeon) - I did go in for the

> ultrasound they did find one or two small gallstones - but

> nothing.... I decide that I better get a second opinion - and go

> ahead and make the long drive back to my original primary care

> doctor... I did and he sent me to a GI and the GI told me it

sounded

> like UC but to make sure I needed to do a colonoscopy, I did and

he

> conformed to me that I did have UC and put me on meds... all

seemed

> to balance out and I stopped taking the meds - I KNOW A BIG NO NO

> but I want to tell the story how it happened.

>

> All was good until I got pregnant about 5 years ago, we lost the

> first baby, but then 3 months later tried again and now we have a

> VERY busy 4 year old, ALL WAS STILL GREAT UNTILL after I gave

birth

> and then the UC came back with a vengeance. This time I got very

> sick - no hospital stay but dropped 100 lbs and lost a bunch of

> blood. Ended up seeing a new GI he put me on meds - this time they

> did not work as well but I was trying - the steroids did seem to

> help, I was not comfortable with the GI so decided to find a new

> doctor.

> The day I went to see him,, I went for my yearly visit with my

> OBGYN - and he found a lump in my neck - so he sent me to an

> Endocrinology doctor - the tried to do a biopsy on it but the lump

> was so hard it would not - they did get a few cells - and they

looked

> odd - so he told me the best thing to do would be to remove it. It

> was in my thyroid.

>

> The big lump ended up to be nothing - but behind it was one that

was

> only 5 mm in size that was cancer - but do the size just removing

it

> was all that I needed no radiation etc.

>

> YEA!! he had me start taking a thyroid tablet every day after they

> removed it. SINCE then my UC problems have stopped.

>

> The day I had seen the new GI he set me up for a new colonoscopy -

I

> went, it looked inflamed, he put me on meds, -- THEY were not

> helping -so it was hard to take them. but I was - All of these

> doctors I told about the high liver enzyme - no one seem to get

that

> excited about it but this last doctor started telling me that it

was

> PSC and wanted to do the ERCP but wanted to wait until after all of

> my thyroid issues were cleared up - he did send me for a blood work

> up that day and yes the LET's did come back high -

>

> well I did go back and see the GI after the Thyroid was all healed

> up - I told him that day that I bet the liver enzymes would be

lower

> because my UC seemed to have went away - I was trying to take the

UC

> meds but not doing good at getting all of the pills down each day -

> and the liver test did come back lower - so he wanted to wait and

see.

>

> I went back about 3 weeks ago for the follow up and he did another

> blood test and it came back sky high - BUT I had started drinking

> several glasses of red wine every night - it did not faze me - and

> looking back I was drinking more than I should have - but hind

sight

> is 20 / 20 - I told the doctor about the amount of wine I had been

> drinking he said that it would not affect the liver enzyme test -

so

> I went ahead and agreed to do the ERCP - I did that last Monday

the

> 31st and still have heard nothing back - the day of the test the

> doctor in his office told my husband yes she does have PSC but he

> wanted to talk to my GI about my gallstones - that my liver did

have

> some affect. that is all my husband got out of the conversation -

I

> called both doctors office the next day and left messages - finally

> heard back from the doctors office that did the procedure - they

told

> me I needed to call my doctor - which I already had - so I called

> again Wednesday - and left a message with the nurse. She told me

> they were not the ones that did the test - I told her I knew that

and

> the other doctor told me to leave a message for him - ( now

remember

> they are all in the same office) - but she did mention the notes

from

> the doctor that did the ERCP and my gallbladder. I left a message

> with the questions I had -

>

> now it is Friday - still no call - so I left another message.

>

> It seems that since he was so pushy for me to have this test done

and

> I did have the damage that someone would call me back - I also

dont

> understand why they did not go ahead an do another blood test.

>

> I have none of the symptoms - and since the thyroid surgery my UC

is

> doing great - the only time I have diarrhea is when I take the UC

> meds - I mentioned that to the doctor and he did not say anything

to

> me other than I need to take the medicine - that seems to be a bad

> idea if it makes me have d.

>

> Please let me know what you think. I have called my primary to

see

> if he would go over my records and tell me what he thinks of all of

> it.

>

> Billie Jo

>

> Oklahoma

>

April 4, 2008