Re: doctors, north AL, etc.

[Guest guest]

hello all,

I have not posted in quite some time. I've either been in the hospital with

pancreatitis attacks, not feeling well, or pretty busy when I do feel well.

I spent two weeks in the hospital the end of April, beginning of May. My

amylase, lipase, and liver enzymes were all elevated. This is the first

time my amylase has been elevated since November 2002. My lipase elevates

about 25% of the time when I have an attack. Just as the panc attack was

getting better and I was tolerating liquids well, my blood count dropped

dangerously and I had to be given two units of blood. My hgb and hct have

been wonderful since being given the blood (around May 9th). They don't

know what caused it because there was no blood loss anywhere that was

noticeable. The GI did an endoscopy just to make sure I didn't have an

ulcer. I just had a colonoscopy in Nov and it was fine so he didn't make me

go through that again. The doctors don't really know what caused the

drastic drop in my hgb and hct, but they think that I might have been having

a flare up of my autoimmune liver disease in addition to the panc attack

since my liver enzymes were in the 700+ range (more than 20 times the normal

limit).

I've had a rough week or so - made rougher by the fact that my phenomenal

internal med doc moved to Destin, FL as of June 1st and another doctor took

over his practice. It was kind of a sudden thing, his wife got an offer for

a major promotion and he has always loved the ocean. I miss him terribly

already! I had decided to give the doctor that took over his practice the

benefit of the doubt and hope for the best. Well, after a night in the ER

that took three rounds of IV pain med to finally get the pain under control.

The new doc didn't want to admit me since my labs were normal and he'd never

seen me. In retrospect I should have just insisted they call my GI.

However, after a bag of IV fluids and mega IV pain med, I was feeling better

so I didn't push to be admitted. The new doc wanted to see me the next day.

He treated me like I was totally stupid. He repeated several times what I

could have on a clear liquid diet - as if I haven't done clear liquids a

million times at least. I told him I'd been on nothing but clear liquids

for the last few days and was having trouble tolerating even that. He told

me to stop taking ALL of my medications because since I was on so many

medicines, they were probably making me nauseated. My potassium was low in

the ER but he insisted that they had given me potassium in the ER. They

absolutely did NOT. He said he was sure they did and that it was in my IV.

NO - they gave me one bag of IV fluids and it was started at the same time

they drew my blood. They didn't know my potassium was low and the ER doctor

didn't even mention my potassium being low when they got the labs back. I

normally ask for a copy of my labs but I was so tired that I just didn't

bother that night. Anyway, my new internal med doc told me there was no way

my pain and nausea was being caused by my panc since my panc enzymes were

normal. Just told me over and over to stay on clear liquids and then maybe

have some toast, maybe some mashed potatoes, maybe some oatmeal, maybe this,

maybe that. Also told me over and over to not take any of my medications at

all until at least Monday. This was on Friday. Friday evening my face was

numb in spots and also my tongue. I told my husband to look on the internet

and see if low potassium could cause numbness and tingling. Yes, that was

one of the symptoms. So, I took my potassium 10 meq even though the doctor

told me not to take any meds. The numbness and tingling was better in a

couple of hours. However, all through the night Friday and all day

Saturday, my blood sugar kept going down to the 30's every 2-3 hours. I

couldn't get it above 80 no matter what I got into my system. I was so

exhausted that I'd drink what I could to get it up and then just go back to

sleep. Two hours or so later, I'd wake soaking wet and trembling in a cold

sweat. Check my blood sugar and sure enough, it'd be back down to about

32-36. That went on continuously til sometime Saturday and then off and on

til sometime Monday. I also had another bad episode of the numbness and

tingling and muscle cramps Saturday morning and afternoon. Both times it

was relieved by taking my potassium. By Monday, I was still having a lot of

pain, nausea, and vomiting so I called the internal med doc as he had told

me to call Monday and let him know how I was doing. He just told me that I

just needed to stay on clear liquids and again said it couldn't possibly be

my pancreas so there was no need to put me in the hospital. Unfortunately,

my GI was out of town over the weekend and Monday. I did see him Tuesday

and he told me that my pain, nausea, and vomiting absolutely could be from

my panc even with normal labs. He said that once you have cp, the nerves

around the panc become damaged and you can episodes of severe pain

essentially caused by the panc with totally normal panc enzymes. He told me

that we would invent a new word - we'd call it pancreatalgia (essentially

meaning pain from the pancreas) since the new doctor seemed unwilling to

call it pancreatitis if the panc enzymes were normal. He told me to tell

the doctor that my GI said I have pancreatalgia and he won't know enough to

argue with me! He agreed with me that there was no need for me to stay with

this doctor who treated me as if I was stupid and that my pain couldn't

possibly be real. My GI and I decided together that my best course would be

to just go back to my family practice doctor as my primary care physician.

My family practice doc has been my doc for over 15 years and he is wonderful

but when my health became so complicated, we decided that a more experienced

internal med doc was warranted. I live in a small town, Athens, AL, so my

family doc certainly doesn't have many (or maybe any) other patients with

chronic pancreatitis, lupus, autoimmune hepatitis, etc. However, he

certainly doesn't treat me like I'm stupid, nor does he doubt me when I tell

him I am in pain. He also has no problem with consulting with my GI doc

when he feels he's over his head. So, I think that just letting him take

back over as my primary care physician is my best bet since trying to find a

new internal med doc that is going to be willing to take the time to really

understand all the complex autoimmune diseases that I have.

By the way, those of you that live in Alabama. My GI/Hepatologist is Dr.

Goetsch in Huntsville. He is beyond awesome and takes wonderful care of me.

My previous GI was in B'ham but he kept insisting there was nothing wrong

with my pancreas even though at that time I was having numerous attacks with

elevated panc enzymes. Of course, this same GI also insisted there was

nothing wrong with my liver for several months after my internal med doc

(the great one) was saying I needed a liver biopsy. The GI finally did a

liver biopsy several months after my liver enzymes starting going 20+ times

the normal limit. I had just a 'little' something wrong with my liver. The

biopsy revealed stage 3 fibrosis (scarring/damage) in my liver. Stage 4 is

cirrhosis. The biopsy also revealed autoimmune hepatitis, which thankfully

typically responds well to treatment with steriods and immunosuppressants

(usually imuran). Right now my liver disease in considered under control,

at least most of the time.

Anyway, anyone in the Huntsville, AL area, I would recommend Dr. Goetsch

above any GI I've seen and believe me I've seen my share!

By the way, anyone in the Ft. Walton/Destin, FL area, you now have a new

internal med doc who is awesome beyond belief. His name is Dr. Wyatt

and he's in practice with a group of 8 doctors. I swear if not for my GI,

Dr. Goetsch, and my sweet family doc in Athens, Dr. Boone, I'd be moving

down to Destin just so I could remain under Dr. Wyatt's care!

well, I need to go.

W