Re: Blood tests and results

[Guest guest]

Zoey,

The only thing I would get is a test for stimulating TSH receptor antibodies

(also called thyroid stimulating immunoglobulins or TSI) at least once early

on and then repeat it when you suspect you might be in remission and want to

wean off ATD's. By then, your antibody titer should have dropped nicely.

[Guest guest]

To Dawn and others:

I strongly urge everyone to try to get the results of their bloodwork faxed

to them (if you have a fax) and if not, to have it mailed. Then, if you

have questions, you can always check them out here or at ithyroid. Another

suggestion that has worked for me, is to decide with the MDs what tests to

have and make sure the right boxes are checked. Otherwise they're likely to

settles for a TSH or TSH wireflex. On a regular basis (every 2 weeks), I've

been getting a Free T4, TSH, and T3 uptake (with others occasionally thrown

in). I also get a CBC, hepatic function, and metabolic profile at least

once a month. ELAINE: Are there other tests I and others should be getting?

Perhaps you can help out.

Regarding Antibody tests: I've had a TRAB, TSI, Antithyroidglobulin, and I

think one or two others. The results were all negative except for the

Antithyroidglobulin. I'm not sure what to do next about the

autoimmune/antibody issue and would appreciate any suggestions.

If the doctors object to you getting copies of your results, you might tell

them you like to keep a copy of your medical records. They will get used to

it in time. My best to all, Zoey

PS; Dawn: You might want to check out Tapazole. I understand it is more

benign to white blood cells than PTU. Just an idea.

Re: Can't take ATDs.

>>Date: Thu, 26 Oct 2000 20:38:30 -0500

>>

>>Dawn, I've not had my thyroid removed, nor have I had RAI. I believe your

>>condition can be managed by anti-thyroid medication until you can go into

>>remission. Has your physician tried PTU? I can't stay on-line long, but

>>DON'T give up hope. Vitamins/supplements and exercise CAN work wonders

for

>>you. I still don't feel like " me, " but I'm better each day!

>>

>>====

>>Bonner

>>

>>

>> Can't take ATDs.

>>

>>

>> >

>> > I've already had alot of advice from this board since I was diagnosed

>> > hyperTin July, but things seem to have stood still for me. I do always

>>go

>> > on too long so I thought I'd put my questions first!:

>> >

>> > 1)Has anyone corrected their mineral imbalance without the aid of ATDs?

>> > 2)Has anyone else reading this reacted badly to ATDs by having their

low

>> > white blood cell count drop?

>> > 3)Does anyone know what will happen to me if I take only propranolol as

>>my

>> > drug therapy? Do I run the risk of damaging organs like my heart by

not

>> > controlling my hormone production? Will my thyroid eventually burn our

>>of

>> > it's own accord?

>> > 4)Am I right in thinking that there are only THREE possible treatments,

>>that

>> > if you can't take the drugs, the other options are both destructive?

>> > 5)If I am wrong, what are the other treatments available to someone who

>> > can't take ATDs?

>> >

>> > There is below, a rather long explaination of why I need these nswers .

>> > Can't help it, I'm just long winded, sorry!

>> >

>> > I responded badly to ATD's - they suppressed my white blood cell count

>>below

>> > range and I am not allowed to take them.

>> >

>> > Consequently, apart from 3 weeks where I was on cabimazole and then

PTU,

>> > beta blockers are the only form of therapy I have had since July 1st

>>when

>>I

>> > was diagnosed.

>> >

>> > So that is four months on beta blockers alone. Does anyone know what

>>might

>> > happen to me if I continue in this way? i STILL do not have a definite

>> > diagnosis.. no antibodies for anything yet. My stance with the docs is

>>that

>> > I will not have irrevoclable treatment until I have a diagnosis.

>> >

>> > This is all very well, but I feel awful, does not being able to take

the

>> > ATD's means I've got to stay feeling the way I am, or give in? I am

>>reading

>> > about food and supplements, but don't know enough yet to start and

>>everyone

>> > else seems to do this alongside ATD.

>> >

>> > I am seeing an endo soon and want to be clear about my remaining

therapy

>> > options. As far as I know, there is only RAI or surgery left. They

>>booked

>> > me in for RAI even tho I don't want it, I have to go for a " chat "

>>before

>> > the appointment is due. I can understand the psychology of this... my

>>life

>> > is not great at the moment and they keep telling me that if I'd just

>>take

>> > one tiny pill I'd be better in no time.

>> >

>> > I do not want to do this, but am almost equally scared of surgery.

>> >

>> > I am finding it very hard to argue convincingly that I should not have

>>RAI

>>,

>> > because it means I am in effect argueing for surgery. HAS ANYONE ELSE

>>OUT

>> > THERE COME THROUGH HYPERT WITHOUT ATDS, RAI, OR SURGERY?

>> >

>> > My quality of life at the moment is not great because of my hyperT: I

>>can't

>> > work as I am too tired; I shake, I'm angry, I cry (tho less than last

>>month)

>> > and I rest on the bed watching telly or sitting reading most of the

day.

>> > I've lost loads of muscle and feel weak, I am nauseous alot, have no

>> > appetite and feel deyhydrated most of the time. I could go on about

all

>> > this but I won't! I am staying with my parents in England and want to

>>get

>> > back to my life in Australia - thanks for the flight advice by the way,

>>I

>> > will be going back, but am not sure when. It all seems rather

>>impossible

>>to

>> > me the way things are.

>> >

>> > I feel that I am stuck on a one way street, either I stay as I am, or I

>>take

>> > action and that means destroying my Thyroid gland forever.

>> >

>> > Any advice gratefully recieved.

>> > Dawn Rose

>> >

>> > Cheers again.

>> >

>>_________________________________________________________________________

>> > Get Your Private, Free E-mail from MSN Hotmail at

>>http://www.hotmail.com.

>> >

>> > Share information about yourself, create your own public profile at

>> > http://profiles.msn.com.

>> >

>> >

>> >

>> >

>> >

>> >

>>

>

>_________________________________________________________________________

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>

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>

>

[Guest guest]

Hi Zoey,

At a TSH of 2.0 I'm extremely hypo. Usually my TSH is between 0.1 and 0.3.

sometimes even lower. Any higher than that and I feel hypo and my cholesterol

shoots up. Some old fashioned docs (like one endo I had) say that all treated

GD patients complain, and they just want to feel hyper again. Smarter docs

realize that we just want to feel normal.

As far as your TSH being normal goes, a lot depends on what you normally were

before all this. I've read that most endos like to keep their post ablative

patients and patients on ATD's at a level where they're almost hyper. Like

say a TSH of 0.3. My last doc was always happy if I had any TSH reading at

all.

Anyway, I think if you tell your doc your symptoms and ask for a dosage

adjustment, he'd comply.

Your negative TSI makes me wonder if you have Graves' or some other type of

hyperthyroidism. Whatever, a negative TSI is always a good sign because

there's less inflammation and infiltration going on. Hope this helps.

Did you read my new article on subclinical hypothyroidism. I describe your

situation in the article. It's at themestream and also linked to my web site.

http://daisyelaine_co.tripod.com/gravesdisease/

[Guest guest]

Hi Mona,

Yes, if you haven't had a TSI in a while, it'd be good to see if yours is

going down. And if you haven't had a CBC or chem panel in a while, these

would be good to have. Most chem panels will include a cholesterol. It'd be

good to get an HDL too. Cholesterol levels are pretty good indicators of your

thyroid function too.

There's a new test that just came out that I'd like to have. It's probably

not widely available but it's put out by RhiGene and it's an autoantibody

screening test. It simultaneously detects circulating antinuclear,

antimitochondrial, parietal cell, smooth muscle and reticulin autoantibodies.

So in one sweep, it's a diagnostic tool for SLE, chronic liver disease,

chronic active hepatitis, primary biliary cirrhosis, pernicious anemia,

celiac disease and other autoimmune disorders.

[Guest guest]

Elaine,

Thanks for your response. I had a Thyroid Stimulating Immunoglobulin (TSI)

Test in July. The results for the TSI Qualitative were " not detected " and

for the TSI Quantitative were < 2.0 with less than 2.0 meaning not

detected. There was also a TSH part of this with a different range and

numbers than the other TSH. I don't understand the difference and don't

know whether it matters.

The Antibody TSH was 3.6 with a range of .4 - 4.0

The regular TSH was 4.20 with a range of .35 - 5.50

Even though my numbers are all within normal range(and I get tested every 2

weeks), I don't feel well which is new for me. I'm always tired and lacking

my usual spunk and motivation. It's been hard for me to get things done -

the normal sorts of things that I did without thinking about them.

Multi-tasking is almost impossible. I would appreciate any suggestions you

might have. My hair is still falling out and I've been taking sterolin for

about 2 weeks. Thanks again, Zoey

Re: Blood tests and results

>Zoey,

>The only thing I would get is a test for stimulating TSH receptor

antibodies

>(also called thyroid stimulating immunoglobulins or TSI) at least once

early

>on and then repeat it when you suspect you might be in remission and want

to

>wean off ATD's. By then, your antibody titer should have dropped nicely.

>

>

>

>

[Guest guest]

Elaine, I'm going for another blood test on Monday and I think the items

checked are TSH, Free T4, FreeT3. Should I check off TSI for a detailed

blood panel? anything else I should add? I'm given the paperwork and told

get bloodwork a week before the appointment. so occasionally I check off

other items. Any suggestions? Last time I added SED. thankx, Mona

Re: Blood tests and results

Hi Zoey,

At a TSH of 2.0 I'm extremely hypo. Usually my TSH is between 0.1 and 0.3.

sometimes even lower. Any higher than that and I feel hypo and my

cholesterol

shoots up. Some old fashioned docs (like one endo I had) say that all

treated

GD patients complain, and they just want to feel hyper again. Smarter docs

realize that we just want to feel normal.

As far as your TSH being normal goes, a lot depends on what you normally

were

before all this. I've read that most endos like to keep their post ablative

patients and patients on ATD's at a level where they're almost hyper. Like

say a TSH of 0.3. My last doc was always happy if I had any TSH reading at

all.

Anyway, I think if you tell your doc your symptoms and ask for a dosage

adjustment, he'd comply.

Your negative TSI makes me wonder if you have Graves' or some other type of

hyperthyroidism. Whatever, a negative TSI is always a good sign because

there's less inflammation and infiltration going on. Hope this helps.

Did you read my new article on subclinical hypothyroidism. I describe your

situation in the article. It's at themestream and also linked to my web

site.

http://daisyelaine_co.tripod.com/gravesdisease/

[Guest guest]

THANKS ELAINE..... I'll add TSI to the list and ask the doc about the

autoantibody screening test. I'll let you know what happens. I'll also put

together the TED experience for you too, have a good weekend! Mona

Re: Blood tests and results

Hi Mona,

Yes, if you haven't had a TSI in a while, it'd be good to see if yours is

going down. And if you haven't had a CBC or chem panel in a while, these

would be good to have. Most chem panels will include a cholesterol. It'd be

good to get an HDL too. Cholesterol levels are pretty good indicators of

your

thyroid function too.

There's a new test that just came out that I'd like to have. It's probably

not widely available but it's put out by RhiGene and it's an autoantibody

screening test. It simultaneously detects circulating antinuclear,

antimitochondrial, parietal cell, smooth muscle and reticulin

autoantibodies.

So in one sweep, it's a diagnostic tool for SLE, chronic liver disease,

chronic active hepatitis, primary biliary cirrhosis, pernicious anemia,

celiac disease and other autoimmune disorders.

[Guest guest]

Hi Elaine,

The results I posted in my last email were from July. My latest TSH (10/17)

was .94 with a range of .35 - 5.50. I've been taking 3.25 mgs of Tapazole

once a day. On the same date, my Free T4 was 1.1 ( .75- 2.0) and my T3

Uptake was 35.4 (23.0 - 38.0). Perhaps I should cut back my Tapazole to 2

1/2 mgs. I do feel incredibly hypo, lethargic, and brain dead. What do you

think? What I take and how much is pretty much up to me.

Also, is it better to get a Free T3 or a T3 Uptake? I'm still somewhat

confused about these. Most endos tell me they're both worthless. What do

you think?

You have been a source of great inspiration and help. My deepest thanks.

Zoey

Re: Blood tests and results

>Hi Zoey,

>At a TSH of 2.0 I'm extremely hypo. Usually my TSH is between 0.1 and 0.3.

>sometimes even lower. Any higher than that and I feel hypo and my

cholesterol

>shoots up. Some old fashioned docs (like one endo I had) say that all

treated

>GD patients complain, and they just want to feel hyper again. Smarter docs

>realize that we just want to feel normal.

>

>As far as your TSH being normal goes, a lot depends on what you normally

were

>before all this. I've read that most endos like to keep their post ablative

>patients and patients on ATD's at a level where they're almost hyper. Like

>say a TSH of 0.3. My last doc was always happy if I had any TSH reading at

>all.

>Anyway, I think if you tell your doc your symptoms and ask for a dosage

>adjustment, he'd comply.

>Your negative TSI makes me wonder if you have Graves' or some other type of

>hyperthyroidism. Whatever, a negative TSI is always a good sign because

>there's less inflammation and infiltration going on. Hope this helps.

>Did you read my new article on subclinical hypothyroidism. I describe your

>situation in the article. It's at themestream and also linked to my web

site.

>http://daisyelaine_co.tripod.com/gravesdisease/

>

>

>

>

>