Re: diagnosis...

August 1, 2000

The first time back in 1984 when I was diagnosed

w/ hyperthyroidism (now I am hypo), I had gone to

the dr. thinking I had the flu or a cold (I kept

loosing weight, loosing my voice, and felt weak, they

first thought I had mono, took blood tests and came

back it was my thyroid. I just had a thyroid

scan done last week. I have been having alot of

trouble breathing (due to reduced lung capacity, am now

on home oxygen), but during my many, many trips to

the ER the dr.'s examining me felt a lump on my

thyroid, so did the pulmonologist. So they sent a report

regarding this to my regular dr. and he agreed w/ my past

history (ovarian cancer and precancer cells in my

intestines) that they would do a thyroid scan to rule out

cancer. I find out this Thursday what the results are on

that. But, thankfully they found it, with all my other

problems I am surprised that they did. (I also have

IBS,Ulcers,Acid reflux, severe scoliosis, asthma, allergies, high

blood pressure, immune deficiency disorder,

endometriosis, an ostomy, high blood pressure, arthritis, and a

disease in my legs that is associated w/ auto immune

disease. (Plus have had 47 operations), so when I have to

go to the dr. w/ a problem, they usually are stumped

because they don't know if it is new or related to one of

the others. So I was thankful that they caught the

lump in the ER.

August 2, 2000

I was diagnosed after I went to the doctor after

being sick for 6 weeks. I was so run down and I felt

awful. She drew blood and told me she would run some

tests and get back to me. Sure enough two days later

she called and informed me I had hypothyroidism. At

that time I had no idea what a thyroid was, where it

was and what it was for. I'm having a terrible

time with my period. I think it's been almost 6 months

since I've had a period. I'm not worried about being

pregnant since my hubby had a vasectomy almost 3 years ago

so I'm not sure what's going on. Any

ideas? Tyra

August 2, 2000

I hope you'll post tomorrow the results of the

thyroid tumor. With everything going on, it must be

impossible to isolate sympoms. IBS is often a result of the

thyroid (I have this too). I get recurring cysts on my

ovaries (they have ruptured and that is SO painful!!) I

lost a lot of hearing (severely impaired now) and I

could never get pregnant. I also have arthritis. The

hearing loss is a result of hypothyroidism.

Also...carpal tunnel...that is another ailment I have that is

directly tied to hypothyroid conditions. There are

so many problems tied to this...

August 2, 2000

I opened my trusted source...The Thyroid

Sourcebook for Women by M. Sara Rosenthal and it

says: " When hypothyroidism is in a more severe stage, you may

experince amenorrhea, a lack of menstruation " . I

would urge you to ask for a blood test to measure T4

(thyroxine) AND T3 (triiodothyronine). Most of us only are

prescribed T4 replacement (synthroid is all thyroxine).

Blood tests on a yearly basis is important as your body

will change. Most doctors only check TSH, which

indicates T4 abnormalities only !! Even my doctor resists

this but I have insisted and I am having blood taken

on Friday. I also insist of getting a COPY of my

results so I can research it as well. If my Doc

won't listen to me and get more in tune with the fact

that I am still not well....then I'll be finding

another doctor. Good luck to you sunshine!

August 2, 2000

I also suffer from psoriasis and my skin had

flaired up terribly so I wanted to go to the

dermatologist. I am part of an HMO so I needed a referral from

my primary care physician. At that time I started

explaining how I was feeling and he ran some tests. I had no

idea that I was " sick " . I feel very fortunate that I

was diagnosed. Especially after hearing some of the

horror stories here.

March 12, 2001

> rheumy doesn't want to use the SLE diagnosis because

> it makes it hard to get insurance, jobs, etc. - she

> says just say CFS/FM or Undifferentiated Connective

> Tissue Disease (I like this one!).

Do potential employers have access to potential

employees diagnosies? If so, how and where do

they get this info?

(WA)

March 12, 2001

Insurance companies collect the data and it is put into large databases that

are accessible to employers, insurance companies, private investigation

firms (often hired by employers), computer hackers. The big problem is you

never know this is the reason you were never hired. You're just never

called back for a second interview even though you may be the most qualified

applicant.

Re: diagnosis...

>

> > rheumy doesn't want to use the SLE diagnosis because

> > it makes it hard to get insurance, jobs, etc. - she

> > says just say CFS/FM or Undifferentiated Connective

> > Tissue Disease (I like this one!).

>

> Do potential employers have access to potential

> employees diagnosies? If so, how and where do

> they get this info?

> (WA)

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

September 24, 2007

You give me credit for knowing a lot more than I do.

There isn't a single test to diagnose AIH. A diagnosis is made by looking at

several aspects, including symptoms, blood tests, biopsy results, and,

finally, one's reaction to treatment with Prednisone. I think other people may

be

able to tell you more.

In advance, I'd read everything I could, to be prepared to ask questions as

you get new information in the doctor's office. I'd try to take someone along,

ideally someone who's also done some reading. I think I mentioned Dr.

Palmer's book as a very basic introduction to various kinds of liver disease.

Be as informed as you can be, in advance.

I was so out of it that I wasn't able to read the simple sentences in

Palmer's book until quite a bit after I began taking Prednisone and Imuran. I

realize now that I probably had ammonia build-up and might have benefited from

Lasulix. However, I didn't know enough to ask about that, and in my rather

demented state, I tried to hide my confusion, which I attributed to fatigue and

" laziness. "

I'd make sure all my medical records were properly copied to the

hepatologist. And, I'd review whatever parts of the records I could, ahead of

time, just

to have the basic information in my head.

I'd ask if Atarax would help more than Benadryl. Ask if there's some reason

not to try it. The medication is very inexpensive. I know you spoke of

needing to stay awake, but if you're exhausted from not sleeping, you're not

going

to function well, anyway. You need rest; being overtired isn't going to help

your liver.

I'd ask how a diagnosis will be reached and what treatment will be, what sort

of monitoring process will be followed, what you can expect as treatment

progresses, what side effects may occur, and what you can do to help yourself in

addition to carefully taking medications as prescribed.

Harper

In a message dated 9/24/07 9:53:06 PM, gndmadee@... writes:

>

> Haper - - can you help me ? What is the testing to DIAGNOSE AIH ?? I

> had ANA and AMA testing in June. The GI doctor I'm seeing just doesn't

> want to " diagnose " me and I don't know why. I clearly have the lab

> results that say 95% Primary Biliary Cirrhosis yet after this doctor

> wrote a letter to my PCP saying I was 'chronic Hep C' I demanded a

> viral load to PROVE that. It came back I have NO Hep C and my issue is

> then tell me WHAT I DO have! First visit this doctor said I had primary

> biliary cirrhosis and then after the liver biopsy he said he could NOT

> diagnose me yet and that's why he's sending me to a hepatolgist at the

> Banner Institue in Phoenix. Any ideas of what I should ask this

> hepatologist would be greatly appreciated. I called today to ask for

> something for the intense itch and the so called nurse said he'd just

> say to take Benedryl. She told me my HEP C is in REMISSION ! I said

> how did THAT happen ? I don't believe any of these doctor's. I want

> to have the knowledge to go to Banner asking the right questions and

> get the right answers. I'm so sick of sitting on this issue and not

> having it addressed. I read the message board every night and I know

> there are similar situations we keep sharing with one another - any

> suggestions from anyone is appreciated. Have a good night everyone.

> Dee

>

**************************************

See what's new at http://www.aol.com

September 25, 2007

Dee. to start with, thank you for the compliment, but I'm NOT NOT NOT the

leader of this group. I don't work now and I'm pretty good shape, so I am able

to

take the time to respond to messages. I have huge gaps in my knowledge and I

rely on better-informed members to speak up. I write because I remember how

helpless I was seven years ago, when I was first diagnosed. I didn't know

about on-line resources in general -- the internet was far more limited back

then.

Finding this group made all the difference to me. A very well-informed

member, someone with some training, gently provided the facts I needed. (Bless

you, Jerry.) Back then, I knew so little that I didn't know what I needed to

know.

So, just now I write to repay a sort of debt. Tomorrow I could get up and

decide it's time to step away for a while.

Now, to more important things, and harder things to respond to. Yes, the

itch is terrible and serious and debilitating, and you need to have the best

treatment available for it. Sometimes there just isn't anything that helps, but

that's usually the case, I think, with people who are far sicker than you are.

" Liver itch " isn't like other itches, not like bug bites or poison ivy; it

has an internal origin that's very complex. As you begin to heal, the itch

will lessen. For most people, it goes away completely when the liver becomes

stable. I haven't had " liver itch " in years, but I never travel without my

bottle of Atarax, just in case -- it's that scarey.

You need to ask your doctor to talk with you about the itch situation. It's

not a trivial thing. The itch will wane as you get better, but, in the

meantime, the physical assault saps your energy. Also, infection from scratching

is

a real possibility, and it can be quite serious.

Perhaps Benadryl is the best drug for you, or perhaps another drug, such as

Atarax, would help you more. Say that you want to try both and compare results.

As I've said before, both probably will make you sleepy.

I've listed for you all the little self-helps that I found useful -- staying

cool, which I know is hard in your situation, patting down with cornstarch

(although, if you're sweaty, that could be a sticky mess!), using smooth bedding

and gown, such as a silk knit from Wintersilks.com, putting a fan in front of

your bare skin at times, rubbing an ice cube across your skin, patting with a

lambswool duster. Some people like Aveena oatmeal soaks. I never found them to

help, but they didn't hurt. Some people like Sarno lotion, which I found

hideously painful to use. Being as calm as possible is good; once you start

getting frantic, the itch seems to escalate.

Sleep as much as your life allows. This is a time when you must take care of

yourself, minimizing your other responsibilities. Just cut back, way back, on

everything else, while you heal.

I do hope you can get a good working relationship with a doctor. That makes a

huge difference.

Best wishes.

Harper

In a message dated 9/25/07 5:38:06 AM, gndmadee@... writes:

>

> Thank you. I turn to you because I read the message board every night and I

> look at you as the " leader " of this support group. You have wonderful advice

> for everyone and you are VERY knowledgable. I thank you for the good advice.

> I am grasping at straws here. This itch can make you lose your mind. I mean

> literally. It's awful to be burning and itching constantly. Worse at night but

> you know that already. I changed GI doctor's yesterday and feel good about

> that. I need someone who I can turn to and they don't blow me off. I can't

> understand why no one will prescribe me a med for the itch. I've never been a

> very assertive person but I'm beginning to get so grouchy from this itch that

> I'm going to DEMAND more and more. I demanded the viral load and it worked. I

> can't understand the medical profession anymore. Everyone in here seems to

> have similar experiences and it's not just in one particular area or by one

> particular doctor - it's just the norm to blow us off

> and it's horrible. I wonder how many people have died because they gave up

> from lack of interest or education on the medical professions part. Sad. I

> thank you. I really don't know what I'd do without this group now. It's been

my

> breath of fresh air and I enjoy everyone in it. Have a wonderful day to each

> and every one of you. Dee

>

**************************************

See what's new at http://www.aol.com

September 25, 2007

Thank you. I turn to you because I read the message board every night and I

look at you as the " leader " of this support group. You have wonderful advice

for everyone and you are VERY knowledgable. I thank you for the good advice. I

am grasping at straws here. This itch can make you lose your mind. I mean

literally. It's awful to be burning and itching constantly. Worse at night but

you know that already. I changed GI doctor's yesterday and feel good about

that. I need someone who I can turn to and they don't blow me off. I can't

understand why no one will prescribe me a med for the itch. I've never been a

very assertive person but I'm beginning to get so grouchy from this itch that

I'm going to DEMAND more and more. I demanded the viral load and it worked. I

can't understand the medical profession anymore. Everyone in here seems to have

similar experiences and it's not just in one particular area or by one

particular doctor - it's just the norm to blow us off

and it's horrible. I wonder how many people have died because they gave up

from lack of interest or education on the medical professions part. Sad. I

thank you. I really don't know what I'd do without this group now. It's been

my breath of fresh air and I enjoy everyone in it. Have a wonderful day to each

and every one of you. Dee

flatcat9@... wrote: You give me credit for knowing a lot more than

I do.