Re: radioactive uptake scan - so frustrated.

[Guest guest]

Pam,

Sounds like I was in a similar situation . . . I was nursing a baby while

hyper and refused the radioactive uptake. However, my endo said that test

was NOT necessary: he said that the thyroid in Graves has a distinctive

look to it and an ultrasound was sufficient. Also, I had eye involvement

and that, for him, cinched it. You mention your thyroid was enlarged--ask

for a description and an assessment based on the ultrasound first. ARe

there denser, thickers areas of the thyroid? If I remember correctly (and I

might not, it was three years ago) there was something about the

heterogeneous nature of the thyroid that made graves clear--meaning there

were irregularities in the density and appearance of the thyroid tissue that

was a hallmark of graves. Again, this is what the endo said and he turned

out to have made other mistakes, so I don't know if it's entirely accurate.

I can't remember the right medical terminology for the various antibody

tests, but it certainly sounds as if you should have all available. For me,

it was the discovery that I had antibodies for both graves and

hashimotos--blocking/binding and stimulating antibodies--that led me to a

new understanding of my situation and has allowed me to remain alert for

changes in either direction.

As for doctors, that's tough. One thing I would recommend: if you can't

find anyone an endo, try for a regular gp or internist with some experience

in thyroid problems who also is interested in having you as a full partner

in yoru tx. I questioned nurses over the phone, asking: will this doctor

be open to keeping my tsh in a range that's best for me, regardless of

'normalcy' on charts and is this doctor open to a patient who pracitices

alternative medicine and needs to be a rather active participant. Some said

no to all this and at least I knew before trying.

B

radioactive uptake scan - so frustrated.

> Well, my latest hope of a doctor just called and said that the only

> way she could treat me is if I took the uptake scan. She said that it

> is either pregnancy related tyroiditis or graves or hashimotos. And

> that the ONLY way to tell is with an uptake test.

>

> So, I asked her about the antibody tests that can determine graves

> and the one for hashimotos. She said that the endo she spoke with

> said the only way was uptake and asked me where I got that

> information. I told her the internet and she said " you can't beleive

> everything you read on the internet, you have to beleive the experts. "

>

> Now, I think you all are the experts. YOu have the disease, you are

> living with it and you are healing yourselves.

>

> So, experts, please tell me if my refusing the radioactive scan is

> the wrong thing to do. I guess all I can do at this point is take

> the test and start getting treatment or to find another dr. If I

> stay with this one is she going to push rai as my only treatment

> option as well? And I just spent 2 days calling every dr.

> reccomended to me and a lot that wern't and finding out that they

> either don't take my insurance or are not accepting new patients.

>

> I just don't know what to do now.

>

> Pam

>

> Ps. I do have some sort of thyroid antibodies, my tsh is .02 or .04

> and TT3 is 1300, T3 485 and TT4 24, I had an ultrasound, no specific

> nodules, thyroid enlarged.

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi New Pam, :-)

I found this that explains tests. Looks pretty good.

http://thyroid.about.com/gi/dynamic/offsite.htm?site=http%3A%2F%2Fwww.endocrinew\

eb.com%2Ftests.html

And since you seem to need a crash course here, I will suggest you also join our

other

group...Graves Support , it is also through . They have been discussing

several

things you are interested in.

The URL for the group is:

graves_support

There is a link on the title bar that says " join this group " . You will need to

click on

that

and will guide you thru getting an ID so you can access the archives and

files

of the group. But you may have steps here you can skip.

Lots of good information in the archives of both groups.

The old -Pam- <sigh> I was getting confused too = :-o

[Guest guest]

Hi Arlene,

You can't tell if it's Graves' from feeling your gland, although sometimes one lobe is enlarged more than another so that;s a clue. And if your hyperthyroidism was caused by surface nodules, your doc would feel them. Your initially low TSH indicated that you were hyperthyroid but it can't tell if it's autoimmune. Any positive thyroid antibody test in a person with hyperthyroidism suggests autoimmune hyperthyroidism, which is Graves' disease. A positive test for stimulating TSH receptor antibodies (same as thyroid stimulating immunoglobulins or TSI) is the best way to diagnose Graves' because these are the antibodies that cause Graves' disease. A negative test, though, doesn't mean you can't have GD because the antibodies may all be in the thyroid gland with few antibodies in the bloodstream. This is rare though. More than 90% of people with GD will have positive blood tests for TSI.

[Guest guest]

Hi & New Pam,

I would love this problem of the appearance of the thyroid gland in Graves'

and Hashimotos, to be cleared up. I was very confused by my

endocrinologists' assessment of my own thyroid gland, when I had a goiter,

as I went hypo from, perhaps, too much PTU. My endo asked if I had ever had

a scan (before this, I had only had a GP and she had not done too many tests

at all). I said no, then he carefully felt my gland and declared it to be

smooth, and so concurred that I had Graves' and not Hashimotos.

From what I understood, he said that if I had " holes " in my thyroid, it

would indicate Hashimoto's, but since mine was smooth, it meant Graves'???

I had the TSH which indicated autoimmune, (plus freeT4) but not too many

other tests, and I was very new at this whole thing and fighting for every

safe test I could get out of the HMO system.

Is there a way to determine whether we have Graves' or Hashimoto's just by

feeling our thyroid gland?

(boy, wouldn't this be simpler than having scans or more harmful tests?)

Arlene

radioactive uptake scan - so frustrated.

>

>

> > Well, my latest hope of a doctor just called and said that the only

> > way she could treat me is if I took the uptake scan. She said that it

> > is either pregnancy related tyroiditis or graves or hashimotos. And

> > that the ONLY way to tell is with an uptake test.

> >

> > So, I asked her about the antibody tests that can determine graves

> > and the one for hashimotos. She said that the endo she spoke with

> > said the only way was uptake and asked me where I got that

> > information. I told her the internet and she said " you can't beleive

> > everything you read on the internet, you have to beleive the experts. "

> >

> > Now, I think you all are the experts. YOu have the disease, you are

> > living with it and you are healing yourselves.

> >

> > So, experts, please tell me if my refusing the radioactive scan is

> > the wrong thing to do. I guess all I can do at this point is take

> > the test and start getting treatment or to find another dr. If I

> > stay with this one is she going to push rai as my only treatment

> > option as well? And I just spent 2 days calling every dr.

> > reccomended to me and a lot that wern't and finding out that they

> > either don't take my insurance or are not accepting new patients.

> >

> > I just don't know what to do now.

> >

> > Pam

> >

> > Ps. I do have some sort of thyroid antibodies, my tsh is .02 or .04

> > and TT3 is 1300, T3 485 and TT4 24, I had an ultrasound, no specific

> > nodules, thyroid enlarged.

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I definitely have an enlarged thyroid. It's not so noticable, at

least my husband and I hadn't noticed it. My first dr. laughed and

said it was really funny.... not to me of course, but funny to her.

Nice, comforting type of dr, hu?

Still searching for another doc.....

> Hi & New Pam,

> I would love this problem of the appearance of the thyroid gland in

Graves'

> and Hashimotos, to be cleared up. I was very confused by my

> endocrinologists' assessment of my own thyroid gland, when I had a

goiter,

> as I went hypo from, perhaps, too much PTU. My endo asked if I had

ever had

> a scan (before this, I had only had a GP and she had not done too

many tests

> at all). I said no, then he carefully felt my gland and declared

it to be

> smooth, and so concurred that I had Graves' and not Hashimotos.

>

> From what I understood, he said that if I had " holes " in my

thyroid, it

> would indicate Hashimoto's, but since mine was smooth, it meant

Graves'???

> I had the TSH which indicated autoimmune, (plus freeT4) but not too

many

> other tests, and I was very new at this whole thing and fighting

for every

> safe test I could get out of the HMO system.

>

> Is there a way to determine whether we have Graves' or Hashimoto's

just by

> feeling our thyroid gland?

>

> (boy, wouldn't this be simpler than having scans or more harmful

tests?)

> Arlene

>

> radioactive uptake scan - so

frustrated.

> >

> >

> > > Well, my latest hope of a doctor just called and said that the

only

> > > way she could treat me is if I took the uptake scan. She said

that it

> > > is either pregnancy related tyroiditis or graves or

hashimotos. And

> > > that the ONLY way to tell is with an uptake test.

> > >

> > > So, I asked her about the antibody tests that can determine

graves

> > > and the one for hashimotos. She said that the endo she spoke

with

> > > said the only way was uptake and asked me where I got that

> > > information. I told her the internet and she said " you can't

beleive

> > > everything you read on the internet, you have to beleive the

experts. "

> > >

> > > Now, I think you all are the experts. YOu have the disease, you

are

> > > living with it and you are healing yourselves.

> > >

> > > So, experts, please tell me if my refusing the radioactive scan

is

> > > the wrong thing to do. I guess all I can do at this point is

take

> > > the test and start getting treatment or to find another dr. If

I

> > > stay with this one is she going to push rai as my only treatment

> > > option as well? And I just spent 2 days calling every dr.

> > > reccomended to me and a lot that wern't and finding out that

they

> > > either don't take my insurance or are not accepting new

patients.

> > >

> > > I just don't know what to do now.

> > >

> > > Pam

> > >

> > > Ps. I do have some sort of thyroid antibodies, my tsh is .02

or .04

> > > and TT3 is 1300, T3 485 and TT4 24, I had an ultrasound, no

specific

> > > nodules, thyroid enlarged.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Elaine,

Thanks so much, once more!

I did have the TSH, but also had TPO (which I think is the one I needed to determine Graves'??? It was originally 124 and I believe the range for this is 60-100. I also had anti-thyroglobulin ABS which tested at 30 with the range being 60-100. I have no idea what either of those tests were. These tests were taken after being on PTU for a month, and my numbers were already getting better for my T4, but my TSH was still .01 (I know it lags) This was last May 29.

Arlene

Re: radioactive uptake scan - so frustrated.

Hi Arlene, You can't tell if it's Graves' from feeling your gland, although sometimes one lobe is enlarged more than another so that;s a clue. And if your hyperthyroidism was caused by surface nodules, your doc would feel them. Your initially low TSH indicated that you were hyperthyroid but it can't tell if it's autoimmune. Any positive thyroid antibody test in a person with hyperthyroidism suggests autoimmune hyperthyroidism, which is Graves' disease. A positive test for stimulating TSH receptor antibodies (same as thyroid stimulating immunoglobulins or TSI) is the best way to diagnose Graves' because these are the antibodies that cause Graves' disease. A negative test, though, doesn't mean you can't have GD because the antibodies may all be in the thyroid gland with few antibodies in the bloodstream. This is rare though. More than 90% of people with GD will have positive blood tests for TSI.

[Guest guest]

Hi Pam!

My specialist has just done the exact same thing - the reason being that my antibody test seemed to rule out auto-immune disease like Graves, so he needs to know EXACTLY what is causing the overactivity. He said it might be hot nodules and if it's a cold nodule they need to take samples to see what it is! Very scary. I've been depressed ever since. He, too, said that it (R.A.I. uptake test) is the only way to be certain EXACTLY what we are dealing with and treat it accordingly, and that if I was HIS wife he would want it done!

So, I guess I'll just have to go along with it.

Peta x

[Guest guest]

Dear Elaine,

As I wrote to New Pam (!), my endo says I need to have a R.A.I. as he needs to know EXACTLY what is causing it in order to treat it properly. Apparently, it doesn't seem to him to be Graves (both from the antibody tests and the fact that I have no eye involvement).

This is all very frightening, both from the radioactive point of view and the fact that I'm terrified of the results.

Thanks, Elaine,

Peta x

[Guest guest]

You must be feeling very frightened about now. I know I was when

first I heard that I had a hypo or hyper active thyroid (the doctor's nurse

told me both at different times). Then I got a call from a specialist

even though I had no idea I was being sent to see anyone else. At

that point I was sooo very frightened and I asked my husband to come with

me. He was wonderful and really made me feel better just not being

alone. So I guess what I am saying, is try to find yourself someone

(preferably hubby) to go with you. It makes a difference.

The Radioactive Uptake Test was really nothing to be too concerned

about. I had it done. I had to take a pill one day, and return

in 24 hours to be scanned. Then they injected some dye into my vein

in my arm and took pictures all around - it was kinda neat and I've had

much worse procedures. The scary part is the word 'radioactive' and

all it brings to mind. The reality isn't so awful. But as always

it is up to you how you treat your body.

I will be thinking of you. Let us know what you decide to do and

how it turns out of course.

Kate

PParkegail@... wrote:

Dear

Elaine,

As I wrote to New Pam (!),

my endo says I need to have a R.A.I. as he needs to know EXACTLY what is

causing it in order to treat it properly. Apparently, it doesn't seem to

him to be Graves (both from the antibody tests and the fact that I have

no eye involvement).

This is all very frightening,

both from the radioactive point of view and the fact that I'm terrified

of the results.

Thanks, Elaine,

Peta x

[Guest guest]

Dear Peta in England,

Hi it's Dawn here - the one who was initially treated in the UK for

hyperthyroidism, but now lives in Australia (just identifying myself

geographically for everyone because we all seem to have different

experiences with trad. medicene in different countries and some of what I

have to say relates to that).

I personally WOULD have the RAIUptake scan because I don't think it gives

you that much exposure to radioactivity - I fly in aeroplanes, travel in

cars and work on the computer a great deal and all of these things expose

you. Also the RAIUptake scan doesn't destroy anything, and it will tell you

if you have nodules, rule out or confirm thyroiditis, and tell you if you

have an auto-immune thyroid disease.

From your email you sound quite worried about what might be found. I can

only encourage you to keep on informing yourself - whatever they find, you

are no worse off for knowing than you are sitting there right now not

knowing! Before I had my RAIUptake, I got myself in a terrible spin trying

to work out what I wanted the diagnosis to be - I knew my Aunt had to have

some of her thyroid gland removed years ago because she had nodules - I

actually think this is an easier thing to recover from than an auto-immune

problem which requires a very long term view and an awful lot of

dilligence!!!

I don't want to ever have the RAI treatment (which is entirely different

from the RAIUptake) if I can avoid it, because I do not want to kill my

thyroid gland and end up dependent on synthroid for the rest of my life, but

instead want to treat the underlying auto-immune problem.

What the RAIUptake scan will NOT do, is clarify whether you have Graves'

Disease, or the transient hyperthyroidism associated with the opening stages

of Hashimotos. This was the position I find myself in when I had the

RAIUptake scan in the UK - I found it frustrating because I still did not

have a diagnosis clear enough for me to confidently seek alternative

therapies. I also needed a clear diagnosis just for myself in order to

decide upon treatment options.

This is where the anti-body tests come in. When I finally got back to

Australia, after I had already been on ATDs for three months, I got a TSI

test which confirmed I had GD - my reading was 10 and normal range was below

1. Having this information has been invaluable in tracking the activity of

my Graves' hyperT - most recently my TSI was down to 2 and gave me a good

indication that I should stay on a maintainance dose of ATD a bit longer.

Whilst I was in the UK, I couldn't get a TSI or a TRAb test for love nor

money(these are two names for the antibody test which is most definitive for

Graves' disease). I was tested for LOADS of other anti-bodies, but they

refused to run this one, even when I got a doctor to agree to do it, he

couldn't find a lab that had heard of it.

I have never found out why this test is so hard to come by in England, but

perhaps it is to do with the NHS and making ends meet - only 2 in 1000

people have GD, whereas many more people have Hashis - I guess they test

everyone with thyroid problems for nodules, thyroiditis, Hashis antibodies

and the ones left over, by elimination must have GD????

Through contacting private hospitals/labs directly, I finally found someone

who knew what I was on about at the London Clinic, in central London. The

guy I spoke to ( by email) regarding getting these tests done works in the

pathology department and is called Mark . He assured me the nearest

place he could get the TSI assay done was in the Sheffield Northern General

Hospital and that it would cost thirty pounds. If you want any more

information about this I'd be happy to send it to you - I've got an email

address and a telephone number.

Okay, hope that helps, sure you already know most of it, but when I was in

your position, I liked hearing from people who'd had the procedure.

All the best to you..

DAWN ROSE

>From: PParkegail@...

>Reply-hyperthyroidism

>hyperthyroidism

>Subject: Re: radioactive uptake scan - so frustrated.

>Date: Mon, 4 Feb 2002 14:06:24 EST

>

>Dear Elaine,

>As I wrote to New Pam (!), my endo says I need to have a R.A.I. as he needs

>to know EXACTLY what is causing it in order to treat it properly.

>Apparently,

>it doesn't seem to him to be Graves (both from the antibody tests and the

>fact that I have no eye involvement).

>This is all very frightening, both from the radioactive point of view and

>the

>fact that I'm terrified of the results.

>Thanks, Elaine,

>Peta x

DAWN ROSE

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