Confused

March 23, 2003

Dear ,

I wouldn’t dream of shooting you,

but don’t think so much, OK! (Big Hug!) I am on an extremely low dose of

prednisone but my latest biopsy shows fibrosis too, but not of the bridging

type. I started on a prednisone 1dosage similar to you. The meds decrease the

inflammation which helps to reduce/prevent more fibrotic

changes. Everyone’s AIH is different and some do take longer to come

around than others as far as reducing inflammation. It is rare for someone to

get into the normal LFT range within six months of diagnosis. Many take up to

two years.

The fact that you have bridging fibrosis

is something to be monitored, so don’t ignore that. If you can keep the

inflammation to a minimum with meds, even if they have to go up in dosage every

once in a while, is best for your liver and will keep it happy. If you have had

pancreatic attacks, your doctor needs to determine if the meds caused that. Lab

tests often look good six months ahead of histological improvement in the liver

tissue at biopsy.

I would side with the rheumatologist. It

sounds like she cares. I noticed that you did not mention a hepatologist.

Are you seeing one? If your GI is nonchalant about your AIH, I would be

nonchalant about seeing him. He sounds like a loser.

AIH is not something to blow off. Not all GI’s are hepatologists.

When did you have your biopsy?

Perhaps you may stay at the stage III

fibrosis with no change for many years. Are you taking Fosamax

or something like that to reduce the chance of bone thinning from the

prednisone?

From: Weston

[mailto:karenw@...]

Sent: Sunday, March 23, 2003 10:39 AM

Subject: Re: [ ]

confused

I don't know if confused or simply

curious is the right term to use at this time. I am wondering why there

are some with AIH that it takes so long and so much prednisone, imuran, or whatever to get the AST, ALT back to normal, but

the biopsy revealed a lesser degree(or about the same in some cases) of

damage than what was revealed on mine. (in my case, the biopsy revealed

bridging port-portal fibrosis and some necrosis - which as far as I can tell,

puts the damage at stage 3) I'm not complaining about being started on a

lower dose of prednisone (20 mg) than a lot of others. I'm also not

complaining about lowering the dose. I'm now down to 12.5 mg daily and

will go to 10 mg daily in two weeks. I'll stay at 10 for a while and

we'll monitor the liver enzymes. I will have my liver enzymes checked

Tuesday and I am a little anxious to see if they are back to

normal. They went down to near normal after only 2 1/2 weeks on

prednisone. Within a month of being on prednisone they were totally

normal and so were all the other things that had been low - hgb,

hct, wbc, rbc, platelets, total protein, albumin. However, I

had an attack of the lovely RUQ abdominal pain that sent me to the ER on Mar

16th and my AST (68), ALT (96), and lipase (304) were elevated. Since the

lipase was elevated, it would make sense to believe that the pancreas was acting

up. That could have been the reason for the elevated AST and ALT and

maybe it didn't have anything to do with AIH. That's what I'm hoping

anyway. I did end up faxing the labs from Mar 16th to both my rheumy and

my GI and told them about the episode. I guess they

weren't concerned about it since I never heard from either of them.

I guess mainly I'm a little afraid

of relying on the lab work too much. In the back of my mind there's this

little voice saying 'what if the damage in my liver is progressing despite the

fact that the numbers on the lab work look great?' For the most part, I

never do anything 'normally'. If anyone can present with one picture and

have the reality be as different as night and day, that would be me! I

know, I know - there's no way of knowing for sure about that without doing

another liver biopsy. Obviously, I don't want a liver biopsy done every

month or even every few months for that matter!

My GI is pretty nonchalant about the

AIH - he acts like its really no big deal. He is letting my rheumy make

the decisions about medication since I have multiple autoimmune diseases.

My rheumy is pretty aggressive about almost everything and she

is certainly more aggressive than my GI about the AIH. He told me

that he didn't need to see my liver enzymes again for six months.

For now my rheumy is checking them at least monthly.

On the one hand, I am thrilled to be

cutting the prednisone down to only 10 mg a day. I hope to get it down to

5 mg a day or even stop it altogether in a few months. However, I

don't want to be sitting on a ticking time bomb while I'm sitting around fat,

dumb, and happy.

Trying to think about it logically,

my brain tells me that despite the fact that my biopsy revealed stage 3

fibrosis, my liver obviously responded very well and very quickly to the

prednisone - as evidenced not only by the reduction of the AST, ALT, and GGT,

but also by the return of all my other blood counts to normal as well.

So, even though the damage to my liver was more progressed than some, I am on

the dose of prednisone that is appropriate for me. Obviously the

goal is to use the very lowest dose of prednisone that will work.

Okay - somebody just shoot me and

tell me to quit thinking so much!

W

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March 23, 2003

,

Thanks for your answers to my post. I doubt that any of the meds had anything to do with the pancreatitis. I initially had pancreatitis back in Jan 2000, had a bad year and then went about 18 months or so with only minor problems until I ended up in the hospital with acute pancreatitis on July 18, 2002. At that time I think the only medication I was on was plaquenil, which I've been on the majority of the time since I was diagnosed with lupus in 1996.

I had a liver biopsy done on Dec 27, 2002 and was told I have AIH on January 6, 2003. For a long time, they kept thinking my elevated liver enzymes were caused by the pancreatitis. The first time that I know of my liver enzymes being elevated (other than when they were elevated with the pancreatitis in 2000) was the end of March 2002 and again in mid April. They were slightly elevated but both my GI and PCP said it was no big deal. Since the pancreatitis in July, my liver enzymes have basically been 'all over the place'. They have ranged from being normal or near normal on a couple of occasions to a high of almost 800 for the AST and almost 600 for the ALT. On Dec 5, 2002, my AST was 770 and the ALT was 314. Only 4 days later on Dec 9, 2002, my AST was 34 and the ALT was 143. After the AIH diagnosis, I asked my GI if it was normal for the liver enzymes to be so sporadic and up and down with AIH and he said that was very typical of AIH.

Part of my confusion/curiousity comes from the fact that even though the level of elevation of my liver enzymes was nothing to sneeze at, there are many here whose liver enzymes were in the thousands yet their biopsy revealed only minimal fibrosis. I'm just wondering why the damage in my liver progressed to bridging (or stage 3) fibrosis when my liver enzymes weren't nearly as high as many with AIH.

My GI is supposed to be the best in my state at dealing with pancreas/bile duct issues, but he is not a hepatologist. I have really mixed emotions about him. I initially went to him in Nov 2000 because of the pancreatitis. I do think I am going to request a referral to a hepatologist at Vanderbilt in Nashville, TN but for now I'm just going to try to take a deep breath and see what the labs over the next couple of months show.

I did have a bone density study done in February - a month after beginning prednisone and my bone density was wonderful. I am taking three Viactiv daily. Each one has 500 mg calcium and also vitamin K and D. I'm sure my rheumy will repeat the bone density study regularly since one of her specialties is osteoporosis. Luckily, I think I inherited a good bone density from my mom. She is 67 and was recently told she has the bone density of an average 30 year old woman despite being on prednisone many times for asthma and for osteoarthritis. Also, I'm not a small frame women so I don't have as many risk factors for osteoporosis as some. I'm not trying to say that I don't need to worry about my bones - obviously I do and they need to be monitored. However, for now it would seem that fosamax is not warranted.

I guess my main concern is that I have been told so many times that various things were no big deal only to later find that they were a big deal. I do have to say that the very first time I saw my current rheumy - which was early July 2002 - two weeks before the return of the pancreatitis - she was not at all happy that my GI and PCP had not further investigated my elevated liver enzymes. She is a great doctor and I do think she truly cares. I guess I need to just relax and trust her to keep an eye on things.

W

March 23, 2003

...its alright to think, but dwelling is no good, it hinders the

living of the ret of your life. I think (and its only my opinion..and we

know what that's worth)

that your pancreatitis has a great affect on your liver numbers. That's

not to say that's good but it may answer some of those questions you

have. Although bridging fibrosis may be indicative of stage 3 fibrosis I

am not sure that it always is...

Portal to portal is is laying down fiber between one portal and another.

A portal is a thin layer of cells each of which contain a hepatic vein.

an artery and a bile duct, if these are not hindered by the fibrosis and

your fluid flow is consistent then it may not be as bad as you think. It

just means some hepatocytes have been injured and in the healing process

collagens have been released to form scar tissue . It has been discoveed

recently that it is possoble for the fobrosis to rexerse itself as new

hepatocytes are formed in regeneration.

You have plenty on your plate and it does you no good to dwell on

something that may not be a real problem....I loves you girl..... keep

up the good thoughts, you'll live to be a hundred .

jerry

March 24, 2003

Yes, and it's encouraging to know that the biopsy improves about 3-6

months after the LFTs, it lags just behind a little bit.

Gee I am learning a lot from this group and you!

Thanks!

RE: [ ] confused

....you are right about staying at a fibrosis level for years...in

fact there is some proof that fibrosis can get better....as long as the

underlying cause is being treated, It is also good to remember that

" liver functions " do not tell us how the liver actually is

functioning....and that normal lfts doesn't necessarily mean that our

liver is getting better. It seems a biopsy is perhaps the best way to

determine how our liver looks at the particular time it is taken , but

functions are also told by albumin levels, and pro-times. The absence

of complications such as varices and ascites is a good sign too.

love jerry

June 25, 2003

In a message dated 6/25/2003 1:28:38 AM Eastern Daylight Time,

broocha@... writes:

> The dr wants to do the

> radiation pill. I am so nervous.

Dear Robin,

Forget the radiation pill, it causes more problems than it solves. Most

people do really well on an ATD (anti-thyroid medication), and a beta blocker,

which will protect your heart and allow you to exercise.

Please go to iThyroid.com for info on nutrition and supplements to treat your

imbalance.

Best,

AntJoan

April 6, 2004

Yes, you're hyperthyroid. Your TSH is low because your pituitary is trying to

shut down your thyroid.

The scan they're proposing is an outdated way of finding out what's going with

your thyroid and has been known in some cases to exacerbate hyperthyroid

symptoms, especially eye problems. Instead ask that they do a sonogram, which

will rule out nodules, and a complete panel of thyroid antibodies in your

blood, which should let you know if your thyroid is overactive due to Graves

disease. These tests will tell you more than the radioiodine uptake they're

proposing and they're less invasive.

Good that you're doing some research already! Let us know if you have more

questions.

Good luck,

Nissa

Quoting <caliassto@...>:

> My regular doctor who I dearly trust and admire is out on vacation,

> so the blowhard from her office has had the pleasure of telling me in

> an inexplicably senseless way that " something is goin' on with your

> thyroid. " oy. I've never had a problem with my thyroid before.

>

> I had them fax my results and just received them today. Lab results

> are T4: 13.5 H and TSH is <0.01

>

> So, from what I can gather this means hyperthyroid, right?

>

> They have set up an appointment for me next week to have a scan. One

> day I take a " few capsules " with a dye agent and the next I get

> scanned. From what little research I've done, I'm not sure I want to

> go that route.

>

> Advice? Commentary on my lab results? Any insight would be greatly

> appreciated because I am not getting answers from the blowhard doc

> and my regular doc won't be back for a few weeks. yikes!

>

June 9, 2004

In a message dated 6/9/2004 2:48:46 AM Eastern Daylight Time,

cdm2020@... writes:

My endo doesn't feel

meds would help because my levels are high.

Hi,

We are generally against RAI at this site, and have plenty of experience

behind us to support this position.

I don't understand why your endo won't try the meds first--they usually work

wonders, and you don't have to destroy your thryoid like you do with RAI.

Please go to our sister site, iThyroid.com, for info on how to use

nutritrion, supplements and other natural ways to handle your illness.

Maybe you can find a different endo who will work with you to prescribe the

medication while you use nutrition and supplements to address the underlying

imbalances that are causing your problem.

Acupuncture is helpful also. I used acupuncture, nutrition and supplements,

as well as Tapezole and a beta blocker, and was able to wean off of the drugs

in a few months, and have been fine ever since (this was about 7 years ago).

Good luck, and keep in touch,

AntJoan

June 9, 2004

Could you post your values with the ranges that the lab uses so we can take a

look at them here?

Sandy

June 9, 2004

> Could you post your values with the ranges that the lab uses so we

can take a

> look at them here?

>

> Sandy

>

Sandy,

My labs are as follows: dated of tests 5/14/04

Test Result Normal Range

TSH .002 0.2-5.5

Total T3 437 70-200

Free T4 3.8 0.9-1.8

I went to the ithyroid.com website and found experience

similar to mine. Do you know of anyone who has followed his advice

with copper? Very desperate and don't want RAI. Thanks

>

June 10, 2004

Your numbers are definitely way out of whack. I would give Tapazole a good

chance before RAI. I think most patients can get their numbers into the normal

range with Tapazole. And stress reduction if you can stick with it seems to

help.

I'm someone that for about 15 years has been borderline hypert so I'm not

sure how long it will take you to get your values into the normal range.

Sandy

March 28, 2005

Hi Chuck,

Didn't you say just a little awhile ago that vitamins

can interfere with absorption...particularly Vit C?

Much love,

Pamela

--- Chuck B <cblatchl@...> wrote:

>

> Robin,

>

> You wrote:

>

> > So for you, taking vitamins with your thyroid meds

> are ok. I know

> >that my endo tells me to take them with nothing

> but water and not

> >have anything for an hour. I was just told that I

> should stay

> >away from cream in my coffee in the morning

> because of the calcium....

> >

>

> Calcium in milk should not be a problem. It is the

> calcium carbonate

> form, which is a popular binder material in many

> drugs and vitamins,

> that could interfere with thyroid absorption (all

> forms). Some powdered

> creamers have calcium carbonate too. Calcium

> supplements or even

> antacids are very problematic, even after more than

> an hour.

>

> The vitamins themselves should not be problem for

> thyroid absorption,

> although most vitamins are absorbed better with

> food. This suggests a

> rigid schedule: You should start by taking the

> thyroid meds on an empty

> stomach. After about an hour of drinking cafe au

> lait, eat something

> followed by vitamins. Then, after a total of three

> hours, take your

> calcium supplements or antacids, perhaps to calm

> your stomach after all

> that coffee and food.

>

> You may need a flow chart and an alarm clock to keep

> all this straight.

>

> Chuck

__________________________________________________

March 28, 2005

Hi Chuck,

Didn't you say just a little awhile ago that vitamins

can interfere with absorption...particularly Vit C?

Much love,

Pamela

--- Chuck B <cblatchl@...> wrote:

>

> Robin,

>

> You wrote:

>

> > So for you, taking vitamins with your thyroid meds

> are ok. I know

> >that my endo tells me to take them with nothing

> but water and not

> >have anything for an hour. I was just told that I

> should stay

> >away from cream in my coffee in the morning

> because of the calcium....

> >

>

> Calcium in milk should not be a problem. It is the

> calcium carbonate

> form, which is a popular binder material in many

> drugs and vitamins,

> that could interfere with thyroid absorption (all

> forms). Some powdered

> creamers have calcium carbonate too. Calcium

> supplements or even

> antacids are very problematic, even after more than

> an hour.

>

> The vitamins themselves should not be problem for

> thyroid absorption,

> although most vitamins are absorbed better with

> food. This suggests a

> rigid schedule: You should start by taking the

> thyroid meds on an empty

> stomach. After about an hour of drinking cafe au

> lait, eat something

> followed by vitamins. Then, after a total of three

> hours, take your

> calcium supplements or antacids, perhaps to calm

> your stomach after all

> that coffee and food.

>

> You may need a flow chart and an alarm clock to keep

> all this straight.

>

> Chuck

__________________________________________________

March 28, 2005

Pamela wrote:

>

> Didn't you say just a little awhile ago that vitamins

> can interfere with absorption...particularly Vit C?

>

Yes, you're right, but I thought she was talking about B-12 and folic

acid. I should have been more specific, since I meant THOSE vitamins

should not be a problem. Vitamin C especially neutralizes B-12, so those

two should not go together anyway.

Chuck

March 30, 2005

Hi Jacquie,

I'm sorry no one has any quick answers for you about your son. If you

don't mind, can you refresh us on why they stopped the mtx, expecially

because he was doing well on it? Did his liver enzymes come back

messed up? Mtx is the first line course of action as a DMARD, as you

probably know. So is he on any medication? Does the rheumy think

that he does NOT have JRA? I can see why you're confused as I am

too. Maybe with a little more info someone here may have some insight

and can point you in a better direction?

Are you seeing a ped. rheumy at Cleveland Clinic or Akron Children's?

I grew up in Chagrin Falls and my parents/siblings all live in Hudson

now.

Stacia and Hunter 8 systemic, iritis

March 31, 2005

Hi, doctor took him off mtx due to he was not the one diagnosed him. As he put

it at our first visit he would respect last dr. treatment/diagnosis, but when he

was so ill last visit and hospitalized cpr was 11 and sedrate in the 80's, and

didn't have much swelling he wanted to re-diagnosis him, and run the gene test

for fever syndromes. The first time we saw him he just moved to Cleveland and

was the new pediatric rheumy at the Cleveland Clinic. (we have been seeing him

for about 1 year) I discussed with him why take him off if he has done so well

on mtx, and he basically said if he was that sick maybe other things are going

on and he wanted to re-evaluate him. I even asked him well don't children who

have jra have flares on meds??? He agreed and told me to take him off, wait for

the blood work to come back and if he gets any fevers or pain gets bad, to bring

him back to him not the pediatrician - so thats where we are at. Sometimes I

feel dr. is reaching and as his mom if diagnosis/treatiment is something

different so be it, just want son to feel good! Everyone here has helped me at

least understand there is no start forward answers, and it does vary . . .

because sometimes I feel I'm not sure whats going on or if I am doing the right

thing. He was on mtx for over one year and did well, been off for almost 2

months and stiffness and pain returning - even when he is not sick, so waiting

it out to see if he continues to get worse and will have to take him back to dr.

so he can reevaluate him.

Jacquie

Re: Confused

Hi Jacquie,

I'm sorry no one has any quick answers for you about your son. If you

don't mind, can you refresh us on why they stopped the mtx, expecially

because he was doing well on it? Did his liver enzymes come back

messed up? Mtx is the first line course of action as a DMARD, as you

probably know. So is he on any medication? Does the rheumy think

that he does NOT have JRA? I can see why you're confused as I am

too. Maybe with a little more info someone here may have some insight

and can point you in a better direction?

Are you seeing a ped. rheumy at Cleveland Clinic or Akron Children's?

I grew up in Chagrin Falls and my parents/siblings all live in Hudson

now.

Stacia and Hunter 8 systemic, iritis

March 31, 2005

Jacquie,

I can only think that maybe the rheumy saw something off in his

regular bloodwork that is pointing him in a possible new direction or

as he's be extra extra thorough? I just wish your child didn't have

to be in pain while you wait out the 3 months for lab results. What

pain level did this rheumy feel was " acceptable " and what level would

be required for you to need to take him in again?

Stacia

March 31, 2005

Jacquie - we are also going through genetic testing for fever

syndromes. Our experience is somewhat different in that my daughters

main symptom is recurring fevers. With one fever, her condition

became really bad and we ended up in the hospital for almost a month -

at that time she had an enlarged liver and spleen. One of the

possible diagnosis that we left the hospital with was systemic JRA.

But since then, she has had recurring fevers but no other arthritis

symptoms from what we can tell (she's only 19 months old). Anyhow,

our doctors also thought it was possible that she could have a

genetic condition that is causing the fevers so they sent in the lab

work to GeneDx. We were also told that it would take 3 months, but

it ended up only taking 1 month. They found that she does have one

genetic mutatation for FMF (a genetic fever syndrome) but you need 2

for a diagnosis. Anyhow, we are doing some further testing and our

doctors have met with some other specialists so we can figure this

out. For the time being she is on naprosyn which has helped keep her

fevers under control. From what our doctors have said and from what

I have read , some of the genetic syndromes have symptoms similar to

systemic JRA - including joint pain. Anyhow, as others have said,

getting a diagnosis of systemic JRA really seems to be a process of

elimination so its probably not a bad idea to run the genetic tests.

Of course that doesn't make it any easier to see your child in pain.

I just want you to know that our doctors have raised similar

concerns. I hope your test results come back sooner that 3 months as

well ...

Good luck!

am

> Hi, doctor took him off mtx due to he was not the one diagnosed

him. As he put it at our first visit he would respect last dr.

treatment/diagnosis, but when he was so ill last visit and

hospitalized cpr was 11 and sedrate in the 80's, and didn't have much

swelling he wanted to re-diagnosis him, and run the gene test for

fever syndromes. The first time we saw him he just moved to Cleveland

and was the new pediatric rheumy at the Cleveland Clinic. (we have

been seeing him for about 1 year) I discussed with him why take him

off if he has done so well on mtx, and he basically said if he was

that sick maybe other things are going on and he wanted to re-

evaluate him. I even asked him well don't children who have jra have

flares on meds??? He agreed and told me to take him off, wait for the

blood work to come back and if he gets any fevers or pain gets bad,

to bring him back to him not the pediatrician - so thats where we are

at. Sometimes I feel dr. is reaching and as his mom if

diagnosis/treatiment is something different so be it, just want son

to feel good! Everyone here has helped me at least understand there

is no start forward answers, and it does vary . . . because sometimes

I feel I'm not sure whats going on or if I am doing the right thing.

He was on mtx for over one year and did well, been off for almost 2

months and stiffness and pain returning - even when he is not sick,

so waiting it out to see if he continues to get worse and will have

to take him back to dr. so he can reevaluate him.

>

> Jacquie

> Re: Confused

>

> Hi Jacquie,

>

> I'm sorry no one has any quick answers for you about your son.

If you

> don't mind, can you refresh us on why they stopped the mtx,

expecially

> because he was doing well on it? Did his liver enzymes come back

> messed up? Mtx is the first line course of action as a DMARD, as

you

> probably know. So is he on any medication? Does the rheumy

think

> that he does NOT have JRA? I can see why you're confused as I am

> too. Maybe with a little more info someone here may have some

insight

> and can point you in a better direction?

>

> Are you seeing a ped. rheumy at Cleveland Clinic or Akron

Children's?

> I grew up in Chagrin Falls and my parents/siblings all live in

Hudson

> now.

>

> Stacia and Hunter 8 systemic, iritis

>

April 22, 2005

Do you know what the results were from the biposy of gallbladder? That

will tell you much more, I'm sure.

If you do some research online, I think you'll find that some people

have a positive ANA, but nothing is ever found to be a " problem. "

Hopefully you'll know more very soon! The waiting game is a pure

nightmare! Hang in there and let us know how it goes.

Steph

January 13, 2006

you need another doc...he does not make sense....those tests are positive.....

eric

bluemoonharmony <bluemoonharmony@...> wrote:

OK, I went to an infectious disease Dr today. He said he doesnt believe

that everyone who comes back with lyme as I did actually have it. He

said my initial blood test was positive, but another blood test the

same day was negative! So he says I do not have it, it was a false

positive, even though I have all the symptoms, he said I just need more

sleep, well I cant sleep cuz I am in so much pain! Is this normal for

the test to come back like that? My friend also just came back with the

exact same results, they want to put her on doxy then test agian in 4

weeks, another test was never mentioned for me. I am confused, I dont

want to seem like a hypochondriac...but SOMETHING is wrong with

me...it's not just a lack of sleep. I am thinking I will try to find

another Dr and get retested. I have read that this happens with Lyme,

that is an imitator of other things....

January 13, 2006

Greetings...A good site to check for a Lyme doctor referral is the Lyme Disease

Association

http://www.lymediseaseassociation.org/index.html<http://www.lymediseaseassociati\

on.org/index.html>. You can send them an email to

Referrals@...<mailto:Referrals@...\

> - put Referral in the Subject, and let them know your location. As everyone

else has indicated, non-LLMD's do NOT understand Lyme. I saw the Director of

Infectious Diseases (prior to seeing an LLMD) and he did NOT know how to treat

Lyme, or diagnose it. My co-infections test showed that I had Ehrlichia, yet

the ID doctor wasn't sure I had Lyme. He finally agreed to put me on Doxy for 6

months, and told me that he would probably just treat my symptoms if the Doxy

didn't cure me. Thank God I listed to this group and got a real Lyme doctor.

Do yourself a favor and find a referral...Tom

[ ] CONFUSED?????...........