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In a message dated 11/23/00 11:22:44 AM Central Standard Time,

daisyelaine@... writes:

<< Subj: Re: Elaine and all.

Date: 11/23/00 11:22:44 AM Central Standard Time

From: daisyelaine@...

Reply-to: hyperthyroidismegroups

hyperthyroidismegroups

Hi Kim,

getting your thyroid balanced should reduce your thyroid swelling. Those

hypo

symptoms you had been having when your FT4 was SO low probably caused your

thyroid to enlarge in its efforts to trap more iodine and make more hormone.

I'm not a big fan of formal diets, but do best cutting out junk, eating less

overall and exercising more. Happy Thanksgiving, Elaine

>>

Elaine, why did my T3 that was normal double in size now to 312? What

symptoms is that causing? Could it have caused me to gain weight and feel

like s h _ _? I can't help but wonder if raising my Tapazole to 15 won't

make the T3 higher..I guess not though cause it was normal at 20 mg.. thanks

Kim

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No Kim,

raising your tapazole will eventually make your T3 lower. Tap will cause you

to produce less T4 and eventually this will result in less T3.

T3 affects mood, emotions, and raises heart rate. It causes you to lose, not

gain, weight. It doubled because Tap doesn't affect how much T3 is converted

from T4. When your body noticed you had less thyroid hormone in your blood,

it tried to help you out by converting more T4 into T3. It's one of those

protective mechanisms which help prevent hypothyroidism. Once you're one dose

of Tap for a while, your body adjusts, but you still do have active Graves'

and, often in GD, there is naturally more T3 being converted from T4..

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I'm on another thyroid list and read about one person who thought they had

bronchitis and it was congestive heart failure and another that thought it

was a cold, and it was congestive heart failure. Both were hyper and both

doctors said bronchitis and cold. I had a cold (know it was cause my little

girl did too) it left and now it's back. How would I know the difference? I

don't want my doctor to think I'm a nut... also when I had a sore throat they

tested my white blood cells and they were fine. Do I need to get them tested

if I get a sore throat again? thanks Kim

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In a message dated 12/1/00 3:06:43 PM Central Standard Time,

daisyelaine@... writes:

<< Subj: Re: Kim

Date: 12/1/00 3:06:43 PM Central Standard Time

From: daisyelaine@...

Reply-to: hyperthyroidismegroups

hyperthyroidismegroups

Kim,

Dawn is correct. There's a very slight, around 0.2% chance of developing

agranulocytosis, and it most always occurs in the first 4 weeks of therapy.

The white blood cell count does normally decline in Graves' disease so it's

good to have a baseline level for comparison. Graves' disease is associated

with a decreased number of T suppressor lymphocytes and also Natural Killer

lymphocytes, the white blood cells that normally would stop autoantibodies

from being produced. And although your B lymphocyte cells are hyperactive,

they're not increased in number.

Also, congestive heart failure, when it does develop, usually occurs in the

elderly.

>>

Elaine, the two people on the list are young people. One had 3 young

children. Wonder what happened with them? thanks Kim what are the symptoms

of heart failure in addition to being like a cold or bronchitis? thanks Kim

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Kim, I was told as long as I'm taking antithyroid meds and if get a sore

throat should contact docs. I was told this regarding PTU, not sure about

TAP. However, I've had the flu and colds in the past and didn't know this

about white blood count until changed doctors. I never worried about it but

if you're concerned you should definitely call your doctor.

If you EVER have pain in or around the heart area, RUN to the emergency

room. I had a friend who complained of this odd pain for over a week and

discovered she had an infection around the lining of the heart!!! Think

it's called periocarditis. Take care of yourself, Mona I'd rather be a

live nut than a nut with heart failure............

Re: Elaine

I'm on another thyroid list and read about one person who thought they had

bronchitis and it was congestive heart failure and another that thought it

was a cold, and it was congestive heart failure. Both were hyper and both

doctors said bronchitis and cold. I had a cold (know it was cause my little

girl did too) it left and now it's back. How would I know the difference?

I

don't want my doctor to think I'm a nut... also when I had a sore throat

they

tested my white blood cells and they were fine. Do I need to get them

tested

if I get a sore throat again? thanks Kim

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Hey Kim and Mona,

I don't know about the congestive heart failure bit... but the sore throat I

do know about. The reason they check your white blood cell count when you

are on ATD's is because a rare side effect of these drugs is

" agranulocytosis " - the drugs stop your thyroid overactivity but can also

stop your immune system. This is very rare. I was told they turn off your

bone marrow production - but my medical nouse does not stretch far enough to

understand that fully. This only happens in a 0.2% (or is 0.02%??? sure

Elaine will know) of people on the info I read.

Sore throats and ulcers in the mouth are indicators of this condition and

that's why my doctor stressed that you MUST seek medical attention if you

are on ATDs and get a sore throat. They check your white blood cells to

rule out agranulocytosis (sp?) - if you have a low white cell count they

take you off them. That's what happened to me. Since then, I have learned

that a low white cell count is a possible sign of Grave's Disease anyway.

Nobody seems to be able to tell me why that is so though... and that little

scribble has given me my next area of investigation. (By the way... feeling

SO much better. Thanks everyone, and Mona, when I first started writing on

this board, you wrote " you WILL feel better " and I can remember thinking

that I didn't even know what better was anymore... but it's here, yippeeee!

cheers pal!)

See you!

DAWN

>From: " Horten, Mona " <mhorten@...>

>Reply-hyperthyroidismegroups

> " 'hyperthyroidismegroups' " <hyperthyroidismegroups>

>Subject: RE: Elaine

>Date: Fri, 1 Dec 2000 10:26:03 -0800

>

>Kim, I was told as long as I'm taking antithyroid meds and if get a sore

>throat should contact docs. I was told this regarding PTU, not sure about

>TAP. However, I've had the flu and colds in the past and didn't know this

>about white blood count until changed doctors. I never worried about it

>but

>if you're concerned you should definitely call your doctor.

>

>If you EVER have pain in or around the heart area, RUN to the emergency

>room. I had a friend who complained of this odd pain for over a week and

>discovered she had an infection around the lining of the heart!!! Think

>it's called periocarditis. Take care of yourself, Mona I'd rather be a

>live nut than a nut with heart failure............

>

> Re: Elaine

>

>

>I'm on another thyroid list and read about one person who thought they had

>bronchitis and it was congestive heart failure and another that thought it

>was a cold, and it was congestive heart failure. Both were hyper and both

>doctors said bronchitis and cold. I had a cold (know it was cause my

>little

>

>girl did too) it left and now it's back. How would I know the difference?

>I

>don't want my doctor to think I'm a nut... also when I had a sore throat

>they

>tested my white blood cells and they were fine. Do I need to get them

>tested

>if I get a sore throat again? thanks Kim

>

>

>

________________________________________________________________________________\

_____

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  • 2 weeks later...

Elaine I was reading on the other list about someone getting MS with Graves and also Lupus. Does that occur alot? Also how many get the liver disease you were speaking of? what precautions is there for that? thanks Kim

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Hi Kim,

We're more likely to get certain other autoimmune diseases than normal

individuals, but it's a minority of patients who develop other autoimmune

disorders. I haven't seen any studies on this, but it seems that people

treated with ATD's are less likely to develop other autoimmune disorders,

probably because your immune system settles down. Stress reduction and

correcting nutrient deficiencies and avoiding sugar, estrogens saturated

fats, aspartame, mercury, cigarettes and any other autoimmune disease

triggers are all steps you can take to prevent secondary autoimmune disorders.

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  • 2 weeks later...

Chapter 7

Elaine, I had asked about us getting other autoimmune diseases such as scerlerderma , ms or lupus.. from the sounds of it we have 45% chance of getting them..this is scary..look at this article..thanks Kim

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Hi Kim,

I haven't read that chapter in a while, but I don't think I've ever read that

our chances are that high of getting these other disorders. We are more

likely to develop other autoimmune disorders and have other autoantibodies

than normal people, but a lot has to do with the treatment we use and how

we've addressed the underlying immune system defect.

Also, the diseases you mentioned aren't the ones we're most likely to get.

The most common ones are celiac disease, pernicious anemia (PA), celiac

disease and type 1 diabetes. But most of us will only have GD.

Hope your Christmas was great. Elaine

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  • 2 weeks later...

In a message dated 1/6/01 5:55:46 PM Central Standard Time, daisyelaine@... writes:

Subj: Re: how do you get thyroid to shrink??weight loss???How??

Date: 1/6/01 5:55:46 PM Central Standard Time

From: daisyelaine@...

Reply-to: hyperthyroidismegroups

hyperthyroidismegroups

Kim, I don't know if you got my reply but your swollen thyroid can be caused by both hyperthyroidism and hypothyroidism. When you're on ATD's, it's recommended that docs watch for this and assure that you're not becoming too hypothyroid. From your last labs that your mentioned here, I wonder if you might be on too high of a Tapazole dose. Why don't you mention this to your doctor along with the other hypoT symptoms you've mentioned.

It's great that you're no longer hyper, but the effects of hypoT can be just as serious. Keep well, Elaine

P.S. AOL loses some of my email too. I never got Charlene's original post. I think they weed out the mail I get from group listings.

What do they do when you have both symptoms? They upped me from 10 mg to 15 mg. I asked him how for it to go away and he said it might get bigger that it goes with Graves:(( He's not very positive for remission..I am afraid that if I do go in remission I would end up having a thyroid storm like the lady that posted on here. What are the odds of that happening..thanks Kim I go to the doctor Tuesday..are there any additional tests you recommend me asking him for?

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I'm so upset over this ... I want my life back ! I've tried the b vitamins and I must admit they have helped some. I called my doctor to get "switched" to Armour ... and she wasn't very happy ... (I'm on 200 synthyroid and had RAI about 5.5 years ago ... and have steadily gone down hill.) My Doctor has to work out the dosage between synthyorid and Armour, so I guess they are not just interchangeable dosage wise?

H.

AH! Love was never yet withoutThe pang, the agony, the doubt,Which rends my heart with ceaseless sigh,While day and night roll darkling by.Byron

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Re: Elaine

In a message dated 1/6/01 5:55:46 PM Central Standard Time, daisyelaine@... writes:

Subj: Re: how do you get thyroid to shrink??weight loss???How?? Date: 1/6/01 5:55:46 PM Central Standard Time From: daisyelaine@... Reply-to: hyperthyroidismegroups hyperthyroidismegroups Kim, I don't know if you got my reply but your swollen thyroid can be caused by both hyperthyroidism and hypothyroidism. When you're on ATD's, it's recommended that docs watch for this and assure that you're not becoming too hypothyroid. From your last labs that your mentioned here, I wonder if you might be on too high of a Tapazole dose. Why don't you mention this to your doctor along with the other hypoT symptoms you've mentioned. It's great that you're no longer hyper, but the effects of hypoT can be just as serious. Keep well, Elaine P.S. AOL loses some of my email too. I never got Charlene's original post. I think they weed out the mail I get from group listings. What do they do when you have both symptoms? They upped me from 10 mg to 15 mg. I asked him how for it to go away and he said it might get bigger that it goes with Graves:(( He's not very positive for remission..I am afraid that if I do go in remission I would end up having a thyroid storm like the lady that posted on here. What are the odds of that happening..thanks Kim I go to the doctor Tuesday..are there any additional tests you recommend me asking him for?

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Hi ,

The conversion from Synthroid to Armour isn't very complicated so your doctor

shouldn't have trouble with that although she may not have much experience

with it's use. Blame this on the synthetic Synthroid revolution. For many

years, glandular thyroid extract, such as Armour, was all that was used.

When synthetic levothyroxine was developed, it was touted as something of a

miracle. It was assumed that the body could get by on T4 alone.

Theoretically, T4 is converted in the body to T3 so all our needs are met.

Clever marketing strategies also had docs believing that only Synthroid could

accomplish this. Hence the class action lawsuit which emerged after it came

out that studies showing generic levothyroxine works the same as Synthroid.

If you read Thyroid Solution, you'll see that many patients who were on

glandular extract were not at all happy when they were put on Synthroid. Many

demanded to be put back on glandular extract because they just didn't feel

well. This should have been the first clue that not all of us metabolize T4

to T3 the way researchers expected. Also using T4 alone, those of us with no

thyroid cells left don't reap the benefits of the thyroid hormone precursors

T1 and T2 which are found in glandular extract. For patients with mild

hypothyroidism who are still producing some thyroid hormone it probably

doesn't matter much if they're on T4 alone. For those of us who have had RAI

or are more severely hypothyroid this becomes an issue.

However, most endos trained at a time when Synthroid was thought to be all we

needed. Marketers emphasized how T4, being far less potent than T3, was a

much safer drug than glandular extract, and docs bought into this.

Even the Synthroid web site now mentions that some of us also need to take

separate amounts of T3. They've calculated that to produce the needed T3 in

those of us with severe hypoT, massive amounts of T4 would have to be given.

So now some docs also prescribe T4 and T3 or use Armour. And Dr. Arem who

wrote The Thyroid Solution is developing a timed release T3 product.

Anyway, the point of this diatribe is that many docs, especially endos, are

leery of glandular extract or know little about it or have been told

synthetic is better. The last time I moved, I chose a family practice doc who

preferred using Armour. Since I moved again, I'll have to find a new doc and

plan to go to an osteopath since they are often more holistically oriented.

Shomon's site also has some good info on recommended docs.

Armour may not be the solution for you....perhaps a combination T4/T3

synthetic product would work better, but you should be the one allowed to

make that decision. Good luck, Elaine

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Hi Kim,

For sure, you want an FT4 and FT3. These are measurements of the available

thyroid hormones circulating in your blood. You will also probably get a TSH,

which may not yet have stabilized so it could indicate that you're still

hyper when you're hypo. This is why the actual thyroid hormone levels are

more meaningful for patients on ATD's.

You could also get a test for stimulating TSH receptor antibodies if you

haven't have one in a while. They're also known as thyroid stimulating

immunoglobulines (TSI), and they'll tell if the autoimmune aspect of your

Graves' disease has slowed down.

If you think you might have celiac disease (gluten sensitivity), which I've

talked about before, ask for a test for anti-gliadin antibodies. I find it's

easier to give up wheat products if you know for sure that you have this

intolerance. And if you have gluten sensitivity and give up wheat, rye,

barley and oats, your thyroid autoimmune disorder will also benefit.

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  • 1 month later...
Guest guest

Elaine, my doctor said from my lab results it could mean I was going into remission although he thought it would be very early..what do you think?

thanks Kim

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Guest guest

Hi Kim,

It is my understanding that being in " remission " requires at the very least, 2 to 3 months of normal thyroid numbers without medication. About the weight gain stuff, I think the ATDs by slowing down our thyroids also slow down our metabolism which the causes the weight gain. At least that was my experience. Although I'm off the meds, I'm afraid to return to my previous high energy ways - lots of bike riding, exercise, etc. for fear of becoming hyper again. That's the only way I know to get all the way back down to my previous weight. It sounds like your health and thyroid are getting better. With best wishes, Zoey

Re: ElaineElaine, my doctor said from my lab results it could mean I was going into remission although he thought it would be very early..what do you think? thanks Kim

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Guest guest

Hi Kim and Zoey - remission to me means being off meds at least 6 months

(just my opinion) - it will be two months for me in a few weeks. I'm

following 's supplement list and found ways to reduce stress, changed my

diet and thinking positive!!! It's so nice not taking meds.... Mona

Re: Elaine

Elaine, my doctor said from my lab results it could mean I was going into

remission although he thought it would be very early..what do you think?

thanks Kim

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Guest guest

I totally agree, Mona. I guess I wanted it to sound a little more within

reach. What supplements seem to be helping you the most? Thanks for your

watchful eye. Zoey

Re: Elaine

>

>

>Elaine, my doctor said from my lab results it could mean I was going into

>remission although he thought it would be very early..what do you think?

>thanks Kim

>

>

>

>

>

>

>

>

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Guest guest

Hi Kim,

Since you did need to have your tap dose decreased, it shows that your

original hyperthyroidism isn't as severe. This could be interpreted as being

close to remission. What would really help here is a test for stimulating TSH

receptor antibodies since a marked reduction of their original titer is a

good indicator of remission. Good luck, Kim.

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Guest guest

Hi Marilyn,

I'm happy to hear your daughter's Giardia results. She should be feeling lots

better. Hope the 3rd test turns out just as well. Hopefully the lab told you

the specimen must be received fairly quickly for the test to be accurate.

When you get to the contributors on themestream, click on under my name and

the articles should come up. If not, try a search under autoimmune thyroid

disease or graves' disease.

Good news here in that my Graves' disease book made the Spring list at my

publisher, McFarland and Company.

The title is Graves' Disease, a Practical Guide, 408 pp. softcover, $35 ISBN

0-1011-6 and can be ordered through the

publisher 1-800-253-2187 or through the website, www.mcfarlandpub.com

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Guest guest

Dear Elaine,

How are you? I tried the themestream website and did a

searh on elaine moore and got only contributor

matches. How do I go to your site?

The results of my daughter's stool exam now showed

twice negative for the giardia. I hope that the third

would also show the same result.

My best to you and the others too!

marilyn

--- daisyelaine@... wrote:

> Hi Dawn,

> When we establish normal ranges, we test a number of

> different people, mostly

> hospital employees, and then average the results.

> From this we establish a

> range in which 50% of the people above the mean and

> 50% over the mean are

> included. From this you can see that there's a

> variance among individuals.

> Some people normal run a white count at the low end

> of normal. I usually run

> a 5,000 count but I've had viral infections that had

> me as low as 2,800 and

> on some occasions I've inexplicably had 11,000

> counts. So don't worry if

> you're in the low end of the normal range.

> Yes, people with GD run low white blood cell counts

> because we're deficient

> in NK lymphocytes and in T suppressor lymphocytes.

> Once you're in remission,

> your WBC could rise a little.

>

> Alkaline phosphatase isn't related to phosphorus at

> all. Alkaline phosphatase

> is an enzyme found in bone and liver cells. Small

> children have high levels

> because there is a lot of bone building going on. In

> Graves' disease you have

> an increased metabolism so your liver is working

> harder, and your alk phos is

> elevated. The ATD's, as well as most drugs, need to

> be detoxified by your

> liver so they cause some elevation as well. If you

> have lots of bone

> activity, lots of bone resorption and formation, the

> level can rise too.

>

> With your low calcium, you want to ask for a test

> for ionized calcium. This

> is a better indicator of the amount of calcium in

> your serum that is

> available to cells. With a total calcium, you get a

> measure of all the

> calcium, including that which is bound to protein

> and not available. You

> could also ask for a phosphorus level. If these are

> abnormal, you could then

> ask for a test for parathyroid hormone.

>

> Bret, Pernicious Anemia is one of the most common

> autoimmune disorders which

> accompanies Graves' disease. Because of antibodies

> to gastric parietal cells

> and lack of intrinsic factor, the body doesn't

> absorb vitamin B 12 from food.

> You can read up about PA, and see if you think this

> fits. That would explain

> why B complex, which generally is abundant in B12

> made you feel better.

>

__________________________________________________

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Guest guest

Elaine!!!!

Congratulations on your book!! I'm thrilled!! Everyone should rush out and

buy it.

Re: Elaine

> Hi Marilyn,

> I'm happy to hear your daughter's Giardia results. She should be feeling

lots

> better. Hope the 3rd test turns out just as well. Hopefully the lab told

you

> the specimen must be received fairly quickly for the test to be accurate.

> When you get to the contributors on themestream, click on under my name

and

> the articles should come up. If not, try a search under autoimmune thyroid

> disease or graves' disease.

>

> Good news here in that my Graves' disease book made the Spring list at my

> publisher, McFarland and Company.

> The title is Graves' Disease, a Practical Guide, 408 pp. softcover, $35

ISBN

> 0-1011-6 and can be ordered through the

> publisher 1-800-253-2187 or through the website, www.mcfarlandpub.com

>

>

>

>

>

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