Re: New to Grave's...Hoping someone can help me

[Guest guest]

Hi -

First off, get copies of all your blood tests. On the copies it will

have the " normal lab range. " That will tell you exactly where your

levels really are. Don't rely on one doc saying it's high and the

other saying it's not bad. GET THE COPIES AND SEE FOR YOURSELF.

You said you were diagnosed on a routine blood work up. Did you have

any uncomfortable symptoms or complaints? Like fast heart rate, or

feeling jumpy, overheated? If you aren't having any hyperthyroid

symptoms, and all you have is a low TSH, you might have something

completely different from a thyroid disorder. And look at them

trying to destroy your thyroid with RAI, going in the gate!!!!!!

A low TSH (as the 0.01 is) can mean high thyroid levels, and yours

aren't THAT bad, or it can mean any number of other endocrine

imbalances.

The elevated liver enzymes could be anything, and perhaps a doctor

should run other tests to clear up this confusion. A gall bladder

problem will elevate 4 different liver enzymes, including the 2 that

MIGHT be affected by the antithyroid meds, but it is RARE. Those are

SGOT, and SGPT. Get the liver enzyme test copies as well. You have

a right to copies of all your medical records!

Having RAI with elevated liver enzymes is not a good idea, in my

opinion, because it can be a burden on the liver and the kidneys from

what I have read. And from a personal account from a friend of my

daughter.

Just my opinion, but I find the glitzy, busy, pompous, narrow-minded

doctors who think that meds are out of question because of high liver

counts is brushing you off too fast.

The glitzy guy who is too busy won't want to fool with the

antithyroid meds, because he probably won't have a clue about how

they should be monitored and adjusted. He's too busy with diabetes

patients to even learn about the very complicated thyroid disorders.

I'd go with the guy who doesn't put so many restraints on you, and is

willing to help with the meds.

I'd reconsider the Radioactive scan, because there

are blood tests, and ultrasound imaging that can tell what you need

to know about your thyroid function. Especially the antibodies

levels - that will give a better idea of what type of thyroid

dysfuntion you have.

I will try to find a good link from Elaine for the tests you should

request. Take this information to the second endo, and ask him to

run these tests. Put off the radioactive scan. It is not necessary

at this point. Not sure what the PSI is.

Just a side note: I've always found that the more highly recommended

the endo, the bigger the disappointment, but that's my experience.

Have seen 26 endos!

Best Wishes,

Chris

-------

Diagnosed with Graves' May 1979

On tapazole since May 1979

Age 53 - menopause at 46

Currently on 7.5 mg/da Tap, 30 mg/da inderal

Latest testing:

8/6/02 -- FT4 - 0.99 (0.71 - 1.85), FT3 - 4.4 (2.2 - 4.0)

9/9/02 -- FT4 - 1.1 (0.7 - 2.2 ), FT3 - 5.4 (1.5 - 4.1)

9/30/02 -- FT4 - 1.3 (0.7 - 2.2), FT3 - 4.7 (1.5 - 4.1)

-------------------

> Hello, Everyone,

>

> First, I'm very grateful this group is here. Where would we be

without the

> internet!

>

> I was diagnosed from a routine blood work-up from my primary care

physician

> in September (TSH .01, T4 14.9, T3 normal, and elevated liver

enzymes..104

> and 58) He told me I needed an endo, who I found in Bergen County,

NJ. He

> turned out to be the busiest doctor on the planet. During my

visit, he was

> interrupted with 2 phone calls and a question from a nurse.

Between all the

> activity he told me drugs were out of the question because of the

elevated

> liver enzymes, which he said were elevated because of the thyroid,

and the

> only other option was RAI or worse case scenario, face a liver

transplant

> with the meds. I told him I wasn't ready to jump into RAI yet and

he asked me

> if I had a problem with trusting doctors and if a doctor in my life

had ever

> made a bad decision for myself or a family member! Then he checked

my

> thyroid, said I had no goiter and it could be thyroiditis. Told me

to get a

> scan with uptake and come back in a month. He also said the

scheduler was

> going to kill him because really there was nothing available for 2

months.

> And she really was annoyed with him when I made the new appt. on

the way out!

> Driving home I got bad vibes and soon made appt for 2nd opinion.

>

> I went for appt. yesterday and whereas the first guy was all glitz

and

> glamor and charm (including the office) the second doctor was worn

at the

> heal. His office was in a messy time warp from the fifties. I was

expecting

> to see someone in their 80's while sitting there waiting to be

called in. He

> turned out to be in his early forties or so but was dressed very

slovenly

> with the wornest shoes I've ever seen. He had a very kind demeanor

and

> seemed caring. First he recommened RAI but fully understood when I

told him

> I wasn't interested in that option yet. He said he was sure it was

Grave's

> and not thyroditis and that meds would be fine and when I asked him

if they

> would effect my liver, he said my liver would get better, but I

would be

> monitored anyway. Since they both recommended scan and uptake, I'm

doing

> that next week and then I can start the meds with the second endo

or do

> nothing and wait till Nov. 8 and go back to the first endo.

>

> Sorry for the long intro, but these are my questions.

> 1) Has anyone gone on meds with elevated liver enzymes and had

success?

>

> 2) The first doc. said I would need a PSI bloodtest, second one

said not

> nec....

> don't even know what that is...do I need it?

> 3) First doc. said T4 indicates mild case of graves so far, second

doc said

> it was

> a strong case. How can they differ so?

> 4) Is possible to equate doc. popularity (re: glizty first one)

to how good

> he is?

> I feel like if he is so sought after, he must have alot to

offer even

> though personality-wise, the other one is so much nicer.

>

> I appreciate any input anyone out there has to offer.

>

> I am determined to turn this negative into a positive. I am eating

so much

> better, taking supplements and trying to be a bit more spiritual.

Since I've

> always been a type-A, I'm trying also to cut corners and not be so

much of a

> perfectionist although I'm not sure how successful I'll be there.

Anyway,

> thanks again for any insights. Sorry so long.

>

> M.

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I'm no expert on the medical stuff, I'm still learning things myself. As for

the doctor personality thing, what I've learned with all kinds of doctors is

to stick with the one that makes me feel comfortable, will listen to me and

will help me make a decision, not make the decision for me. I no longer care

about the glitz and glamour, if the guy won't listen to me and insists his

choice is my choice then he's history!!

I have spent way too many years being intimidated by doctors. Finally at 39

I'm realizing that these doctors WORK for ME! I do not tolerate a doctor who

treats me rudely, refuses to listen to me and insists I follow a " treatment "

just because they say so. I am an intelligent person, given the correct

information and time to research and ask questions on my own I can make my

own, informed decisions. Does that make sense? I hope so. Just because a

doctor is " popular " or sought after does not necessarily make him/her a good

doctor.

in MA, USA

Diagnosed w/Graves, 03/1997

So far refusing RAI Treatment and Surgery!!!

Remission from 06/2000 to 07/2002, suspected " hyper " again.

Currently not taking any meds.

[Guest guest]

Hi -

This is some great info to start you off:

thyroid testing:

http://www.suite101.com/article.cfm/graves_disease/53708

antibodies testing:

http://www.suite101.com/article.cfm/graves_disease/54459

RAIU (radioactive scan and uptake) info:

http://www.suite101.com/article.cfm/graves_disease/64958

Best Wishes,

Chris

-------------

> > Hello, Everyone,

> >

> > First, I'm very grateful this group is here. Where would we be

> without the

> > internet!

> >

> > I was diagnosed from a routine blood work-up from my primary care

> physician

> > in September (TSH .01, T4 14.9, T3 normal, and elevated liver

> enzymes..104

> > and 58) He told me I needed an endo, who I found in Bergen

County,

> NJ. He

> > turned out to be the busiest doctor on the planet. During my

> visit, he was

> > interrupted with 2 phone calls and a question from a nurse.

> Between all the

> > activity he told me drugs were out of the question because of the

> elevated

> > liver enzymes, which he said were elevated because of the

thyroid,

> and the

> > only other option was RAI or worse case scenario, face a liver

> transplant

> > with the meds. I told him I wasn't ready to jump into RAI yet and

> he asked me

> > if I had a problem with trusting doctors and if a doctor in my

life

> had ever

> > made a bad decision for myself or a family member! Then he

checked

> my

> > thyroid, said I had no goiter and it could be thyroiditis. Told

me

> to get a

> > scan with uptake and come back in a month. He also said the

> scheduler was

> > going to kill him because really there was nothing available for

2

> months.

> > And she really was annoyed with him when I made the new appt. on

> the way out!

> > Driving home I got bad vibes and soon made appt for 2nd

opinion.

> >

> > I went for appt. yesterday and whereas the first guy was all

glitz

> and

> > glamor and charm (including the office) the second doctor was

worn

> at the

> > heal. His office was in a messy time warp from the fifties. I

was

> expecting

> > to see someone in their 80's while sitting there waiting to be

> called in. He

> > turned out to be in his early forties or so but was dressed very

> slovenly

> > with the wornest shoes I've ever seen. He had a very kind

demeanor

> and

> > seemed caring. First he recommened RAI but fully understood when

I

> told him

> > I wasn't interested in that option yet. He said he was sure it

was

> Grave's

> > and not thyroditis and that meds would be fine and when I asked

him

> if they

> > would effect my liver, he said my liver would get better, but I

> would be

> > monitored anyway. Since they both recommended scan and uptake,

I'm

> doing

> > that next week and then I can start the meds with the second endo

> or do

> > nothing and wait till Nov. 8 and go back to the first endo.

> >

> > Sorry for the long intro, but these are my questions.

> > 1) Has anyone gone on meds with elevated liver enzymes and had

> success?

> >

> > 2) The first doc. said I would need a PSI bloodtest, second one

> said not

> > nec....

> > don't even know what that is...do I need it?

> > 3) First doc. said T4 indicates mild case of graves so far,

second

> doc said

> > it was

> > a strong case. How can they differ so?

> > 4) Is possible to equate doc. popularity (re: glizty first one)

> to how good

> > he is?

> > I feel like if he is so sought after, he must have alot to

> offer even

> > though personality-wise, the other one is so much nicer.

> >

> > I appreciate any input anyone out there has to offer.

> >

> > I am determined to turn this negative into a positive. I am

eating

> so much

> > better, taking supplements and trying to be a bit more

spiritual.

> Since I've

> > always been a type-A, I'm trying also to cut corners and not be

so

> much of a

> > perfectionist although I'm not sure how successful I'll be

there.

> Anyway,

> > thanks again for any insights. Sorry so long.

> >

> > M.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Dear

Thank you for taking the time answer my questions and address my concerns; it

is much appreciated.

At the time I had my routine physical and the primary care physican ordered

bloodwork, I had told him I was feeling fine. The liver panel and thyroid

check were a routine part of the pysical. When the tsh came back less than

..01 he asked Quest to check t3 and t4 and the t3 was normal and the t4 was

14.9 and the free t4 was 5.9 or the other way around. The SGOT and SGPT were

104 and 58. An ultrasound of the liver and and all surrounding organs showed

no problems. He ran every test possible for many functions and all

auto-immune diseases and they all came back neg. except of course the thyroid

and liver enzymes.

Looking back, I did have most of the symptoms of hyper t but never thought

of them as a collective group of symptoms of anything. I had strong heart

palpatations and hot flushes but attributed that to maybe starting a

peri-menopause stage as I have heard that is not uncommon. I lost 5 pounds in

August even after a 10 day eating binge at the buffets in Disney World while

on vacation but thought maybe all the walking had done that. If I went to

bed before 12 o'clock midnight, my eyes would pop open about 3 or 4 in the

morning and would lay awake for at least an hour or so. Finally, I would

feel surges in my body, like a current. Lucky for me I was due for a

checkup at the same time but never mentioned any of the above to the doctor

until

he told me about my hyper thyroid. (I still have most of the above symptoms

except the heart palps)

My primary did give me copies of all the lab tests but I stupidly gave my

copies to the second endo and forgot to get them back at the end of the

visit. I have learned so much in such a short period of time from being a

member here how important it is to be in charge of yourself with this disease

so I do plan on keeping a folder with all records.

The first endo did put me on a beta blocker, 50 mg. It has helped with the

palpatations but I think its making me very tired.

I'm taking your advice and calling up on Monday to see if there are any

bloodtests or anything else to do besides taking the scan on Wednesday and

Thursday. We'll see what they say.

I am also taking your advice about asking them to ok me to get lab results

directly along with the doctors. I had blood drawn in the first endos office

on the 10th of Oct. and he still hasn't got back to me with the results.

When I called the office and asked them to fax them to me, they said the

doctor had to review them first. That was awhile ago.

Reading your feedback, I feel more comfortable about going with the second

endo. With all your experience with these doctors, I'm sure you have seen

all kinds.

My best friend's husband is a pediatrian so I pick his brains when I can with

medical questions and I also asked him what the story is with all these

endo's and why they have their back up so high with thyroid patients. He

said that patients get mad and frustrated at them because of all the

fluxuations in their ongoing treatment. I think it is because their text

books say ,for example, hyper t patients are hyper and anxious so therefore

they treat their patients accordingly, as if they are a little left of

center emotionally. In all fairness, I'm sure there are some good endos out

there as well.

Thank you again, for all your information and the good sites.

Good night....

[Guest guest]

Fay, you are right, it was TSI. The second doctor said the results I walked

in with were enough (TSH, and all the T3 and T4 tests) to start treatment.

He suggested starting meds that very day but then as an afterthought said

lets do an uptake and scan first. I asked about more bloodtests before drugs

and he said no, didn't need them. Do you think this reflects negatively on

him? Is this test very important? Now I'm wondering about him.

Thank you for your input.

Be well...

[Guest guest]

Thank you, , for responding to my post. The two endo's are so different

in every possible way . My instinct is to go with the second one or get just

one final opinion from a third.

Thanks again...

[Guest guest]

Pam, thank you for your welcome and taking the time to address my post. I am

so relieved to hear your comments about the liver enzymes as it was a big

concern to me. It also gives me a new perspective on the doctor who seems to

have misinformed me.

Take care and good night...

[Guest guest]

2) The first doc. said I would need a PSI bloodtest, second one

> said not

> nec....

He probably said TSI. Did #2 say not necessary or not necessarily? It is

necessary at the beginning of treatment and when you are nearing

remission. If dr. no. 2 is amenable to the TSI I'm inclined to go with

him. You need access. It's one thing when it takes months to see a

certain dr. Once I'm in though I expect to see him as needed, which, if

it turns out that you do go on anti-thyoid meds is once a month for the

first month or two, and then labs every 6-8 weeks (no longer than 8 weeks

and the testing at that point should be TSH and FREE T4. The FREE T3

would be nice too, especially if you start to exhibit hypo signs.).

Now about your liver. It is common for the liver levels to be elevated

due to the Graves itself. Someone on this list should be able to comment

on whether your enzymes are indeed already dangerously high. Chances are

they're not. But that's why if you go on ATD's your endo will want to

take your liver levels for the first month or two. (And white blood count

- a rare side effect is to have them go down dangerously.)

Take care, Fay

________________________________________________________________

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[Guest guest]

Hi M and welcome,

I believe it is not a matter of glitzy or not. The fact is this doctor was

ready to kill your thyroid, and did not yet even have a diagnosis. If you

had not questioned him, you would now have hypothyroidism, which is a

disease, not a cure. Good for you to question, many patients do not, and

then become a patient for LIFE, due to this kind of treatment.

Personally, I was threatened by some of the best, and told I was going to

die unless I had RAI. And I am a regular on several thyroid boards, and have

been for awhile now. In my experience, the doctors that already have

memorized 'lines' readily said, to 'prove' RAI is the only way to go...do

NOT have experience treating any other way. So trying to learn about all of

this, and be treated with the ATDs ( anti thyroid drugs) becomes almost

impossible when being treated by someone like this, because he will not have

the experience, or concern needed to use the drugs properly.

The patients treated by doctors like this are most often given MORE lies,

through their treatment, which you will see on this list and other boards as

you go along. They are told they are allergic, when they are not. They are

told any liver oddity is going to kill them when it is only a normal part of

the thyroid problem and does clear up once treated PROPERLY. They are most

often badly overdosed on the drugs, made hypo , sick, miserable, achy, sore,

depressed, and major brain fog sets in. These are NORMAL symptoms of HYPO.

This kind of hypo is created by NOT being properly monitored on the drugs,

and the WRONG labs being relied on to judge the proper dose of ATD.

When using ATDs, we are started at a high dose to get things under control,

and the dose is then lowered as each lab shows it is time. Eventually you

find a maintenance dose, and stay there until remission. That is IF you have

Graves'.

Since it is possible you have thyroiditis, that is another story.

Thyroiditis runs a natural course, and goes away. Shame if you had taken the

RAI and it was only thyroiditis which is only a matter of a few months, and

it is gone.

-Pam L -

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Hi M,

Me again. :-)

You said * He

said that patients get mad and frustrated at them because of all the

fluctuations in their ongoing treatment. *

A small amount of fluctuation will happen, but if it is enough to cause the

patient distress, the doctor simply does not have enough experience. So don

t worry about that. OK ?

As far as the scan, many of us have refused it . With the new antibody tests

available today, there is no longer any need. The TSI antibodies will show

you if it is Graves'. A nice SAFE ultrasound, will tell there are any

nodules.

The scan consists of radiation and iodine. Since small amounts of radiation

are possibly not safe. ( if there were no other option, then the risk would

be worthwhile, but in this case there is no need ). The iodine goes straight

to the thyroid, and iodine is the fuel our thyroids use to make hormone,

this added iodine to your system will add MORE hormone. Doesn't sound good

huh ?

Since you choice WAS the drugs, you could have started them and later, if

you wondered about a nodule, you can still do that later.

IF you do a scan, you can NOT be on the drugs, or it will change the results

For that matter, your diet changes the results. Which is one reason I find

it totally useless.

I know a gal that had a scan done, and it showed her uptake as low. Then she

went on a low iodine diet, and had another scan. Surprise, surprise ! The

reading came in as very high. Her thyroid was hungry for iodine and sucked

it all up. So given our choices today, with antibody tests and ultrasounds,

there is no longer any need to swallow any radiation.

One test you have not mentioned is WBC. This needs to be done as a baseline

reading, so later, AFTER drugs are taken, you can check the WBC again, and

see if there is any change. IF this is not done ahead of time, the RAI

pushers can show the patient in black and white, that their WBC is off, and

the drugs are killing them...so take that RAI ! Truth is WBC is affected by

Graves' itself.

Can you tell I have been down the road too many times. You may soon

start to see why folks like Granny and Jody, and ... get so upset at

the dirty tricks used on innocent patients when they are at their sickest

and simply not as capable as they normally are. They are tricked and lied to

and told RAI is 'wonderful'. And then they become a patient for life,

instead of being treated for as long as it takes with the drugs, and allowed

to wait for the Graves' to run it's course, and remission to happen.

-Pam L -

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

You're very welcome, -

Please keep us posted on your progress. I think you'll do just fine!!

Please print out these links from Elaine and take them with you:

thyroid testing:

http://www.suite101.com/article.cfm/graves_disease/53708

antibodies testing:

http://www.suite101.com/article.cfm/graves_disease/54459

RAIU (radioactive scan and uptake) info:

http://www.suite101.com/article.cfm/graves_disease/64958

Best Wishes,

Chris

------

>

>

> Dear

>

> Thank you for taking the time answer my questions and address my

concerns; it

> is much appreciated.

>

> At the time I had my routine physical and the primary care physican

ordered

> bloodwork, I had told him I was feeling fine. The liver panel and

thyroid

> check were a routine part of the pysical. When the tsh came back

less than

> .01 he asked Quest to check t3 and t4 and the t3 was normal and the

t4 was

> 14.9 and the free t4 was 5.9 or the other way around. The SGOT and

SGPT were

> 104 and 58. An ultrasound of the liver and and all surrounding

organs showed

> no problems. He ran every test possible for many functions and all

> auto-immune diseases and they all came back neg. except of course

the thyroid

> and liver enzymes.

>

> Looking back, I did have most of the symptoms of hyper t but

never thought

> of them as a collective group of symptoms of anything. I had strong

heart

> palpatations and hot flushes but attributed that to maybe starting

a

> peri-menopause stage as I have heard that is not uncommon. I lost 5

pounds in

> August even after a 10 day eating binge at the buffets in Disney

World while

> on vacation but thought maybe all the walking had done that. If I

went to

> bed before 12 o'clock midnight, my eyes would pop open about 3 or 4

in the

> morning and would lay awake for at least an hour or so. Finally, I

would

> feel surges in my body, like a current. Lucky for me I was due

for a

> checkup at the same time but never mentioned any of the above to

the doctor

> until

> he told me about my hyper thyroid. (I still have most of the above

symptoms

> except the heart palps)

>

> My primary did give me copies of all the lab tests but I stupidly

gave my

> copies to the second endo and forgot to get them back at the end of

the

> visit. I have learned so much in such a short period of time from

being a

> member here how important it is to be in charge of yourself with

this disease

> so I do plan on keeping a folder with all records.

>

> The first endo did put me on a beta blocker, 50 mg. It has helped

with the

> palpatations but I think its making me very tired.

>

> I'm taking your advice and calling up on Monday to see if there are

any

> bloodtests or anything else to do besides taking the scan on

Wednesday and

> Thursday. We'll see what they say.

>

> I am also taking your advice about asking them to ok me to get lab

results

> directly along with the doctors. I had blood drawn in the first

endos office

> on the 10th of Oct. and he still hasn't got back to me with the

results.

> When I called the office and asked them to fax them to me, they

said the

> doctor had to review them first. That was awhile ago.

>

> Reading your feedback, I feel more comfortable about going with the

second

> endo. With all your experience with these doctors, I'm sure you

have seen

> all kinds.

> My best friend's husband is a pediatrian so I pick his brains when

I can with

> medical questions and I also asked him what the story is with all

these

> endo's and why they have their back up so high with thyroid

patients. He

> said that patients get mad and frustrated at them because of all

the

> fluxuations in their ongoing treatment. I think it is because

their text

> books say ,for example, hyper t patients are hyper and anxious so

therefore

> they treat their patients accordingly, as if they are a little

left of

> center emotionally. In all fairness, I'm sure there are some good

endos out

> there as well.

>

> Thank you again, for all your information and the good sites.

>

> Good night....

>

>

>

>

>

>

[Guest guest]

Pam, Fay, Jody and ....Thank you all, once again. It means

alot to me that you took the time to address my issues. The answers to my

questions fell into place with all your contributions. I've now got

questions written down for the second doctor for Monday and can speak to him

with a bit of knowledge of the situation.

You are all angels!

Thank you....

M.

[Guest guest]

I asked about more bloodtests

> before drugs

> and he said no, didn't need them. Do you think this reflects

> negatively on

> him?

Not necessarily. Due to the constraints of insurance, accessibility, etc.

we often are stuck with not simply less than perfection but way less. If

he is amenable to running the proper tests and ordering appropriate and

timely dose reductions, don't worry.

Here's basically what you need:

Antibodies - this was covered fairly recently. You need them done at the

beginning of treatment and as you near remission

Liver and white blood count - before you start ATD's and monthly for the

first 2/3 months

Thyroid profile - run if anyone ever wants to rely on TSH alone. You need

free T3 and free T4; if your dr. won't do both then make sure he's

consistent so you can chart your changes easily. Remember, it's the free

T's, not total T's. These should be done every 6-8 weeks and don't be

afraid to ask for bloodwork sooner if your symptoms change. Don't go

beyond 8 week intervals in your labs.

I sent a message to a friend starting ATD's on achieving maximum success

on ATD's that one day I'll fine tune and send here. It talks about the

bloodwork as covered above and reactions. The reaction bit has been

discussed here lately - many endos don't know when a reaction can be rode

through (pardon poor language use here), like itching, and there actually

seem to be some diabolical drs. who deliberately mishandle reactions to

goad a patient into RAI.

When it comes to medicine as practiced in 21st century America it's

caveat emptor. We're all here to help you with the caveat part.

Take care, Fay

________________________________________________________________

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[Guest guest]

HI ,

Well, I can tell you a little bit about the liver enzymes from my own

experience. When first diagnosed I had an elevated alkaline phosphatase,

which the endo told me was not thyroid related. I've since learnt that this

liver enzyme is often elevated with Graves patients. I started Tapazole, a

pretty high dose, and my SGOT and SGPT became elevated. Once I was able to

reduce my dose, those numbers went back into normal range. It's rather

extreme for your doctor to say that about a liver transplant because if

those numbers you listed are the SGOT/SGPT, then those aren't very high at

all. They could be high from a variety of things including a fever, taking

tylenol, just getting over the flu or from Graves itself. You only need to

worry when those numbers are in the thousands.

Most of us with Graves have had to " shop around " for a good doctor. The

glitzy doctors don't necessarily know what they are doing, any more than any

other. One of the endos that I used was recently voted a top doc in Dallas

and I know more about the thryoid than she does. The best thing is to look

for someone who will listen to you and who you feel comfortable talking to.

Also, run from anyone who tells you that RAI is your only option. You sound

like a good candidate for ATDs. Much luck to you! This group has been a

great resource for me and I hope it will be for you too!

Kristi

New to Grave's...Hoping someone can help me

> Hello, Everyone,

>

> First, I'm very grateful this group is here. Where would we be without

the

> internet!

>

> I was diagnosed from a routine blood work-up from my primary care

physician

> in September (TSH .01, T4 14.9, T3 normal, and elevated liver

enzymes..104

> and 58) He told me I needed an endo, who I found in Bergen County, NJ.

He

> turned out to be the busiest doctor on the planet. During my visit, he

was

> interrupted with 2 phone calls and a question from a nurse. Between all

the

> activity he told me drugs were out of the question because of the elevated

> liver enzymes, which he said were elevated because of the thyroid, and the

> only other option was RAI or worse case scenario, face a liver transplant

> with the meds. I told him I wasn't ready to jump into RAI yet and he asked

me

> if I had a problem with trusting doctors and if a doctor in my life had

ever

> made a bad decision for myself or a family member! Then he checked my

> thyroid, said I had no goiter and it could be thyroiditis. Told me to get

a

> scan with uptake and come back in a month. He also said the scheduler was

> going to kill him because really there was nothing available for 2 months.

> And she really was annoyed with him when I made the new appt. on the way

out!

> Driving home I got bad vibes and soon made appt for 2nd opinion.

>

> I went for appt. yesterday and whereas the first guy was all glitz and

> glamor and charm (including the office) the second doctor was worn at the

> heal. His office was in a messy time warp from the fifties. I was

expecting

> to see someone in their 80's while sitting there waiting to be called in.

He

> turned out to be in his early forties or so but was dressed very slovenly

> with the wornest shoes I've ever seen. He had a very kind demeanor and

> seemed caring. First he recommened RAI but fully understood when I told

him

> I wasn't interested in that option yet. He said he was sure it was

Grave's

> and not thyroditis and that meds would be fine and when I asked him if

they

> would effect my liver, he said my liver would get better, but I would be

> monitored anyway. Since they both recommended scan and uptake, I'm doing

> that next week and then I can start the meds with the second endo or do

> nothing and wait till Nov. 8 and go back to the first endo.

>

> Sorry for the long intro, but these are my questions.

> 1) Has anyone gone on meds with elevated liver enzymes and had success?

>

> 2) The first doc. said I would need a PSI bloodtest, second one said not

> nec....

> don't even know what that is...do I need it?

> 3) First doc. said T4 indicates mild case of graves so far, second doc

said

> it was

> a strong case. How can they differ so?

> 4) Is possible to equate doc. popularity (re: glizty first one) to how

good

> he is?

> I feel like if he is so sought after, he must have alot to offer even

> though personality-wise, the other one is so much nicer.

>

> I appreciate any input anyone out there has to offer.

>

> I am determined to turn this negative into a positive. I am eating so

much

> better, taking supplements and trying to be a bit more spiritual. Since

I've

> always been a type-A, I'm trying also to cut corners and not be so much of

a

> perfectionist although I'm not sure how successful I'll be there. Anyway,

> thanks again for any insights. Sorry so long.

>

> M.

>

>

>

>

>

>

>

[Guest guest]

Hi, Kristi,

Thank you for responding. I have learned alot in the last week especially

when it comes to RAI. I'll never get that. My liver enzymes have already

gone down

again and are now close to normal (70 and 50) and at this time I'm not

taking anything except beta blockers.

It looks like I have no choice but to take a scan tomorrow so I can get

treated hopefully in the near future. I think doctor #2 is just incompetent

(didn't see any need for any bloodwork to get started on drugs, said the mid

Sept. lab work and the scan were enough) And doctor #1 wanted to use my

slightly elevated liver enzymes as an excuse for RAI. So after I indulge

them with this scan, I want the medicine. If it doesn't work out I have 3

more appointments with new doctors lined up from this Friday through Dec. 6.

I also have an appointment with a TED specialist in NYC.

The only problem i'm having now are slightly irratated eyes but I'm scared

anyway.

This has been such a nightmare. I can't believe the state of affairs with

Graves. There seems to be so many discrepancies and bad advice from

doctors. I'm surprised there aren't any maverick endocrinologists out there

how have made waves about RAI and tried to change the standards.

To make matters worse, I'm getting no sleep at night. worse. I have a six

year daughter and I have to be " on " for her but I am so tired. But it is an

absolutely beautiful fall day here in NJ. I think I'll get out to get some

sun.

Take care

M

[Guest guest]

,

i sure feel for you! I have a four year old and a two year old and there

was a time when I just didn't think I could handle anything anymore.

Especially when I went hypo, which is MUCH worse than hyper. The good news

is that after a few weeks on ATDs, you'll feel so much better! I had the

scan done too. I didn't even know it was a bad idea at the time. The

doctors told me I needed it and that it was safe, so I did it. I'll never do

anything again that a doctor says , until I've researched it myself! I'm

still amazed by how little doctors and endos, who are supposed to be

specialists, know about this disease. It's truly frightening. I'm just

glad that I found this group and Elaine's book before doing RAI. I actually

had it scheduled and cancelled after doing the research. I hope you get

your meds soon! Let us know!

Kristi

Re: New to Grave's...Hoping someone can help me

> Hi, Kristi,

>

> Thank you for responding. I have learned alot in the last week especially

> when it comes to RAI. I'll never get that. My liver enzymes have already

> gone down

> again and are now close to normal (70 and 50) and at this time I'm not

> taking anything except beta blockers.

>

> It looks like I have no choice but to take a scan tomorrow so I can get

> treated hopefully in the near future. I think doctor #2 is just

incompetent

> (didn't see any need for any bloodwork to get started on drugs, said the

mid

> Sept. lab work and the scan were enough) And doctor #1 wanted to use my

> slightly elevated liver enzymes as an excuse for RAI. So after I indulge

> them with this scan, I want the medicine. If it doesn't work out I have 3

> more appointments with new doctors lined up from this Friday through Dec.

6.

> I also have an appointment with a TED specialist in NYC.

> The only problem i'm having now are slightly irratated eyes but I'm scared

> anyway.

>

> This has been such a nightmare. I can't believe the state of affairs with

> Graves. There seems to be so many discrepancies and bad advice from

> doctors. I'm surprised there aren't any maverick endocrinologists out

there

> how have made waves about RAI and tried to change the standards.

>

> To make matters worse, I'm getting no sleep at night. worse. I have a six

> year daughter and I have to be " on " for her but I am so tired. But it is

an

> absolutely beautiful fall day here in NJ. I think I'll get out to get

some

> sun.

>

> Take care

>

> M

>

>

>

[Guest guest]

Ok now I am confused , and trust me that dont take much these days ,, in

kristi's email it says that Hypo is much worse then Hyper ? is that true, I

have always heard the other way around ? Am I missing the point here?

Please someone elighten me .. thanks

Kristi writes:

[Guest guest]

Hi Joanne-

What they mean is hypo is generally worse for the patient (you feel just

terrible). Medically, detrimental effects from hyper happen faster so they

are more of a concern to doctors. Hypothyroidism also causes

life-threatening conditions but they happens at a much slower rate. For

example, thyroid storm (life-threatening from hyper) can happen very quickly

while myxedema coma (life-threatening from hypothyroidism) happens when a

patient is hypothyroid for a long time.

I have been both extremely hyper (waking HR 150 bpm) and hypo. For me, I

felt worse being hypothyroid than hyper. a few people feel worse when

they're hyper than they do when they're hypo but that seems unusual

(anecdotally).

Take care,

> Ok now I am confused , and trust me that dont take much these days ,, in

> kristi's email it says that Hypo is much worse then Hyper ? is that true,

I

> have always heard the other way around ? Am I missing the point here?

> Please someone elighten me .. thanks

>

>

>

> Kristi writes:

>

>

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement

of

> the listowner. I have no input as to what ads are attached to emails.

> --------------------------------------------------------------------------

------------

>

>

[Guest guest]

thanks for clearing that up, so both are life threatening ,just one is

faster then the other .. ok I get it now .. thanks

Utecht writes:

[Guest guest]

I've heard of the thyroid storm. Could you give me more of a definition of

what it is and what I can look forward to?

>

>Reply-To: graves_support

>To: graves_support >

>Subject: Re: Re: New to Grave's...Hoping someone can help

>me

>Date: Wed, 23 Oct 2002 08:10:56 -0700

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>

>Hi Joanne-

>

>What they mean is hypo is generally worse for the patient (you feel just

>terrible). Medically, detrimental effects from hyper happen faster so they

>are more of a concern to doctors. Hypothyroidism also causes

>life-threatening conditions but they happens at a much slower rate. For

>example, thyroid storm (life-threatening from hyper) can happen very

>quickly

>while myxedema coma (life-threatening from hypothyroidism) happens when a

>patient is hypothyroid for a long time.

>

>I have been both extremely hyper (waking HR 150 bpm) and hypo. For me, I

>felt worse being hypothyroid than hyper. a few people feel worse when

>they're hyper than they do when they're hypo but that seems unusual

>(anecdotally).

>

>Take care,

>

>

>

>

> > Ok now I am confused , and trust me that dont take much these days ,, in

> > kristi's email it says that Hypo is much worse then Hyper ? is that

>true,

>I

> > have always heard the other way around ? Am I missing the point here?

> > Please someone elighten me .. thanks

> >

> >

> >

> > Kristi writes:

> >

> >

> >

> > -------------------------------------

> > The Graves' list is intended for informational purposes only and is not

>intended to replace expert medical care.

> > Please consult your doctor before changing or trying new treatments.

> > ----------------------------------------

> > DISCLAIMER

> >

> > Advertisments placed on this yahoo groups list do not have the

>endorsement

>of

> > the listowner. I have no input as to what ads are attached to emails.

> >

>--------------------------------------------------------------------------

>------------

> >

> >

[Guest guest]

I've heard of the thyroid storm. Could you give me more of a definition of

what it is and what I can look forward to?

>

>Reply-To: graves_support

>To: graves_support >

>Subject: Re: Re: New to Grave's...Hoping someone can help

>me

>Date: Wed, 23 Oct 2002 08:10:56 -0700

>MIME-Version: 1.0

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>FILETIME=[80561480:01C27AA6]

>

>Hi Joanne-

>

>What they mean is hypo is generally worse for the patient (you feel just

>terrible). Medically, detrimental effects from hyper happen faster so they

>are more of a concern to doctors. Hypothyroidism also causes

>life-threatening conditions but they happens at a much slower rate. For

>example, thyroid storm (life-threatening from hyper) can happen very

>quickly

>while myxedema coma (life-threatening from hypothyroidism) happens when a

>patient is hypothyroid for a long time.

>

>I have been both extremely hyper (waking HR 150 bpm) and hypo. For me, I

>felt worse being hypothyroid than hyper. a few people feel worse when

>they're hyper than they do when they're hypo but that seems unusual

>(anecdotally).

>

>Take care,

>

>

>

>

> > Ok now I am confused , and trust me that dont take much these days ,, in

> > kristi's email it says that Hypo is much worse then Hyper ? is that

>true,

>I

> > have always heard the other way around ? Am I missing the point here?

> > Please someone elighten me .. thanks

> >

> >

> >

> > Kristi writes:

> >

> >

> >

> > -------------------------------------

> > The Graves' list is intended for informational purposes only and is not

>intended to replace expert medical care.

> > Please consult your doctor before changing or trying new treatments.

> > ----------------------------------------

> > DISCLAIMER

> >

> > Advertisments placed on this yahoo groups list do not have the

>endorsement

>of

> > the listowner. I have no input as to what ads are attached to emails.

> >

>--------------------------------------------------------------------------

>------------

> >

> >

[Guest guest]

I've heard of the thyroid storm. Could you give me more of a definition of

what it is and what I can look forward to?

>

>Reply-To: graves_support

>To: graves_support >

>Subject: Re: Re: New to Grave's...Hoping someone can help

>me

>Date: Wed, 23 Oct 2002 08:10:56 -0700

>MIME-Version: 1.0

>Received: from n21.grp.scd.yahoo.com ([66.218.66.77]) by

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>FILETIME=[80561480:01C27AA6]

>

>Hi Joanne-

>

>What they mean is hypo is generally worse for the patient (you feel just

>terrible). Medically, detrimental effects from hyper happen faster so they

>are more of a concern to doctors. Hypothyroidism also causes

>life-threatening conditions but they happens at a much slower rate. For

>example, thyroid storm (life-threatening from hyper) can happen very

>quickly

>while myxedema coma (life-threatening from hypothyroidism) happens when a

>patient is hypothyroid for a long time.

>

>I have been both extremely hyper (waking HR 150 bpm) and hypo. For me, I

>felt worse being hypothyroid than hyper. a few people feel worse when

>they're hyper than they do when they're hypo but that seems unusual

>(anecdotally).

>

>Take care,

>

>

>

>

> > Ok now I am confused , and trust me that dont take much these days ,, in

> > kristi's email it says that Hypo is much worse then Hyper ? is that

>true,

>I

> > have always heard the other way around ? Am I missing the point here?

> > Please someone elighten me .. thanks

> >

> >

> >

> > Kristi writes:

> >

> >

> >

> > -------------------------------------

> > The Graves' list is intended for informational purposes only and is not

>intended to replace expert medical care.

> > Please consult your doctor before changing or trying new treatments.

> > ----------------------------------------

> > DISCLAIMER

> >

> > Advertisments placed on this yahoo groups list do not have the

>endorsement

>of

> > the listowner. I have no input as to what ads are attached to emails.

> >

>--------------------------------------------------------------------------

>------------

> >

> >

[Guest guest]

I've been hyper and hypo, at least I could sleep as hypo and I could walk up and

down the stairs, but I wouldn't wish either on any one.

Jen

Re: New to Grave's...Hoping someone can help me

Ok now I am confused , and trust me that dont take much these days ,, in

kristi's email it says that Hypo is much worse then Hyper ? is that true, I

have always heard the other way around ? Am I missing the point here?

Please someone elighten me .. thanks

Kristi writes:

[Guest guest]

I've been hyper and hypo, at least I could sleep as hypo and I could walk up and

down the stairs, but I wouldn't wish either on any one.

Jen

Re: New to Grave's...Hoping someone can help me

Ok now I am confused , and trust me that dont take much these days ,, in

kristi's email it says that Hypo is much worse then Hyper ? is that true, I

have always heard the other way around ? Am I missing the point here?

Please someone elighten me .. thanks

Kristi writes:

[Guest guest]

I've been hyper and hypo, at least I could sleep as hypo and I could walk up and

down the stairs, but I wouldn't wish either on any one.

Jen

Re: New to Grave's...Hoping someone can help me

Ok now I am confused , and trust me that dont take much these days ,, in

kristi's email it says that Hypo is much worse then Hyper ? is that true, I

have always heard the other way around ? Am I missing the point here?

Please someone elighten me .. thanks

Kristi writes: