Elaine

[Guest guest]

Elaine...Thank You for your response. Makes me want to cancel my

doctor's appointment. What is 's list everyone is talking about? I

started taking

magnesium first...don't really know the dosage I should take. Does 500mg

sound ok? My Mg++ level was low, calcium normal. Does anyone have a K+

deficeincy with Graves also? Mine is lower end of norm. If I can just

stop

shakin' I'd be cool....Thanks....BP

[Guest guest]

Hi Kim,

I regret RAI because it caused severe hypothyroidism which caused me to gain

weight, have sleep apnea, horrible periods, moodiness, pretibial myxedema or

swollen, yucky legs, loss of libido, skin changes, hair changes you name it.

And taking extra thyroid hormone doesn't help. Replacement hormone, usually

T4, doesn't replace everything. Doctors tend to go by lab results rather than

symptoms and most docs I've seen in the last decade tend to take my symptoms

lightly or dismiss them since I look healthy.

What I really regret is rushing. But a decade ago, most docs knew little

about Anti-thyroid drugs and insisted that RAI only affected the thyroid.

Well, the body of my pancreas is also atrophied, and RAI is probably the

cause, but how can you prove it? RAI, does though, affect many organs, not

just the thyroid.

If I could do it over again, RAI would be my last choice. But we're all

different. You need to study all your options. Read my article on the

iThyroid site explaining conventional options. It's good that you're

researching this. Elaine

[Guest guest]

Kim, I think it'll take 1-3 weeks before all those old stores of thyroid

hormone are used up. Then you'll feel much better. You may even feel a little

hypo and need your dose reduced.

Lots of people have no complaints at all about RAI. And 16 years ago they

were using lower doses than they are now so he may have lucked out and ended

up only moderately hypothyroid. However, long term effects of radiation can

take up to 30 years to show up since the changes are in stem cell

chromosomes. Remember, too, that radioiodine can cause the eye disease that

may occur in patients with Graves' disease. You just have to consider all

the pros and cons of the different treatments. None of them are perfect. Then

you have to decide what works best for you, keeping in mind that, on its own

GD will resolve at the rate of 10-25% each year. This means that the natural

course of GD has to be considered. Keep asking questions. Elaine

[Guest guest]

Elaine, thank you..you are so smart. Did you gain lots of weight? I gained

15 pounds with this. I went from 115 to 130 since January..wonder why??

thanks so much Kim

[Guest guest]

Hi Kim,

By the time I was diagnosed I'd had my worst symptoms and was entering

remission on my own. I'm almost 5'8 " and my weight dropped to 112 pounds a

decade before my diagnosis. In the meantime I was diagnosed with

hypertension, quit smoking and gained some weight. When I was diagnosed I

weighed 135 which was just right for me. And I had few if any symptoms then.

I often regret my accidental diagnosis. After RAI I gained 15 pounds which

has taken me a decade to lose.

[Guest guest]

it's thyroid eye disease, also known as Graves' ophthalmopathy. It's an eye

condition which sometimes accompanies the thyroid disorder or it may occur

independent of thyroid disease.

[Guest guest]

Tempk,

I'm sure many people who have RAI have no complaints. I had none for the

first 9 years because I thought all the symptoms I had (pretibial myxedema,

sleep apnea, etc.) were normal. None of the treatment methods are perfect,

but long-term follow-up mortality studies that have come out in the last year

haven't been encouraging when comparing RAI to other methods. I think it

would be a disservice not to share this knowledge. I interviewed hundreds of

people for my book and only found a handful who had no complaints about RAI.

And none of them had had RAI for longer than 5 years. What I can say good

about RAI is that it's cheap (the least expensive option), and it reduces

symptoms quickly. There's also little follow-up because once you become hypo,

only annual visits are required. I'd love to hear from folks who had positive

experiences.

[Guest guest]

Please tell me where you got the information regarding RAI causing TED??? I

am perplexed as all my research says that TED may occur before, during , or

years after the onset of Graves. RAI may aggravate TED not cause it. So,

please can anyone give me the exact study where this information was

obtained. I don't want opinions---just the actual study.

Thanks

Re: Elaine

>

>Kim, I think it'll take 1-3 weeks before all those old stores of thyroid

>hormone are used up. Then you'll feel much better. You may even feel a

little

>hypo and need your dose reduced.

>Lots of people have no complaints at all about RAI. And 16 years ago they

>were using lower doses than they are now so he may have lucked out and

ended

>up only moderately hypothyroid. However, long term effects of radiation can

>take up to 30 years to show up since the changes are in stem cell

>chromosomes. Remember, too, that radioiodine can cause the eye disease

that

>may occur in patients with Graves' disease. You just have to consider all

>the pros and cons of the different treatments. None of them are perfect.

Then

>you have to decide what works best for you, keeping in mind that, on its

own

>GD will resolve at the rate of 10-25% each year. This means that the

natural

>course of GD has to be considered. Keep asking questions. Elaine

>

>

>

>

[Guest guest]

In a message dated 9/17/00 11:18:11 PM Eastern Daylight Time,

temk@... writes:

<<

Is it possible that people who took RAI and are satisfied don't post to this

site or any site? >>

I believe there is comprehensive info on RAI at the iThryoid site, including

studies about results. While it is true that some people with RAI are

satisfied (at least for the first 2 years, until all the side effects start

showing up), I can't imagine that anyone would voluntarily destroy an organ

in their body when there are other options. In Europe, it is the treatment

of last resort (if it is used there at all anymore, which I don't know). I

think we should look at why it is so popular in the U.S. Could it be we have

a fondness for " instant solutions, " and also that the medical community

creates patients for life? Could it be that in the US we don't have a

holistic approach, but rather seek to medicate, excise, radiate, rather than

work with the body to find the underlying cause and then seek to return the

body to balance? It is true that some people have organic conditions that

lead to thryoid disease, such as tumors, etc. Even with these, believes

that the tumor is a symptom rather than a cause, and that nutritional balance

is the answer. I believe in the holistic approach initially, especially

w/hyperT, where meds can control the symptoms for years while we explore

alternative cures. Why rush such a drastic, irreversible " solution, " even

if, as you say, some people were satisifed with it? That alone would not

cause me to consider this " treatment " as a first choice.

AntJoan

[Guest guest]

In a message dated 9/18/00 6:53:11 PM Central Daylight Time, temk@...

writes:

<< Subj: Re: Elaine

Date: 9/18/00 6:53:11 PM Central Daylight Time

From: temk@... (temk)

Reply-to: hyperthyroidismegroups

hyperthyroidismegroups

Kim,

TED is Thyroid Eye Disease.

>>

Thank you. Thank God I don't have that. Will I get it since I don't have

it? thanks Kim

[Guest guest]

Kim,

TED is Thyroid Eye Disease.

Re: Elaine

>

>In a message dated 9/17/00 9:23:06 PM Central Daylight Time,

temk@...

>writes:

>

><< Subj: Re: Elaine

> Date: 9/17/00 9:23:06 PM Central Daylight Time

> From: temk@... (temk)

> Reply-to: hyperthyroidismegroups

> hyperthyroidismegroups

>

>

> Please tell me where you got the information regarding RAI causing TED???

I

> am perplexed as all my research says that TED may occur before, during ,

or

> years after the onset of Graves. RAI may aggravate TED not cause it. So,

> please can anyone give me the exact study where this information was

> obtained. I don't want opinions---just the actual study.

>

> Thanks >>

>

>What is TED? thanks Kim

>

>

>

>

[Guest guest]

Kim,

It's hard to say who will get TED, since it can occur anytime, but most

people get it within 6 months of their thyroid symptoms if they're going to

get it. Smoking worsens it so if you smoke, you might want to cut down. It's

a small percentage of patients who get clinically significant TED. Elaine

[Guest guest]

I meant to reply to this message the other day, but there were so many to read, that I didn't take the time. Like AntJoan, I know some people who've undergone RAI and who are functioning fine today, but had absolutely horrible side effects from destroying the thyroid gland ... swollen eyes, overall bloating, lethargy, depression, etc. and it took quite some time before the right level of synthetic hormone could be determined. In today's society, we all look for a "quick fix," but sometimes that's not the best solution. I intend to keep battling my disorder with exercise, nutrition, vitamins/mineral supplements and PTU because I'd like to think my Graves' disease will go into remission and I'll be a healthier person for having adopted a better lifestyle.

=====

Bonner

Re: Elaine> > > >> >Dear Kim,> >> >Some lucky people can have RAI and take one pill a day and "feel great."> >However, I have been with this board since it began, and I can attest to> all> >those who had RAI and could never find the right dosage of Synthroid to> keep> >them in balance, and who also had terrible side effects. Once you destroy> >the thyroid it's GONE FOREVER. Going on meds for a while protects your> body> >from the symptoms while giving you a chance to cure yourself or to go into> >remission naturally. It may be a little more effort on your part, but it's> >worth it.> >> >Regards,> >AntJoan> >> >> >> >> > > > >

[Guest guest]

Dear Bonner,

Re your last post re RAI: Patients should realize that RAI is in no way a

" cure. " It gets rid of hyperthyroidism (which often goes into remission on

its own, and can be managed w/nutrition, supplements and/or drugs), by

causing hypoT, which can never be cured because the thyroid is destroyed.

(Some people are hypoT because of an imbalance--this can also be treated

w/nutrition, supplements and medication, as the thyroid still exists, so it

has a fighting chance!) The patient is then dependent on synthetic hormone

for the rest of her life--she has no thyroid. If for any reason she could

not get the drug, she would die. That is not a cure. Gee, I could " cure " my

ingrown toenail--let's cut off my leg!!! Look--no more ingrown toenail, ever

again!!! What a miracle! Isn't modern medicine great!!!

AntJoan

[Guest guest]

In a message dated 10/3/00 3:05:21 PM Central Daylight Time,

daisyelaine@... writes:

<<

Hi Kim,

I'd agree your lab tests sound more moderate than moderate to severe.

I don't agree with your doc's saying that the ATD's won't affect the

swelling. According to the ' Endo book, one of the first effects of

ATD meds is a reduction in goiter volume. >>

Elaine, you make ever thing better ) He told me I can stop the

beta-blocker. My heart rate is in 88 to 100 range now. I am to take 12.5

today and 12.5 tomorrow. If heart rate gets above 110 I have to go back on

it. The thyroid medicine is the ATD? is that right? I know asthma med's

but this is all foreign.. thanks so much. Do you have children? Did you

have the fear of dying when you got this? My doctor said this is

normal..thanks Kim

[Guest guest]

Hi Kim,

Yes the ATD is the thyroid med and the beta blocker is the one that reduces

your cardiac symptoms like heart rate. This is the one you were concerned

about with your asthma so it's a good sign that you are getting off of it.

I have two grown kids. They're very healthy but both developed hypertension

in their early 20's despite being slim and athletic. This happened to me too

so I'm suspicious that they'll end up with GD. In fact, my daughter's thyroid

levels show that she may be on her way.

By the time I was diagnosed I had no symptoms, even my blood pressure had

returned to normal, so I wasn't worried about dying exactly, but somehow I

got caught up in the thyroid storm scare and had RAI. That's why I now

caution people to not panic and take a more sensible approach to treatment

than I did.

[Guest guest]

Elaine, please explain the " thyroid storm " for me. I must not be as attuned

to my body as many of you are. It seems I developed symptoms over a period

of time and thought I was going crazy. I attempted to self-medicate by

drinking wine every night to escape the feelings. That didn't work, of

course, and I sought psychiatric help. My " shrink " is the one who suspected

Graves' disease and sent me on this path. I see from other e-mails that O/C

and depression can be symptoms of GD. Are there other emotional

disturbances associated with it? Thanks!

=====

Bonner

[Guest guest]

Hi Bonner,

Thyroid storm is a rare condition characterized by exaggerated symptoms of

hypertension. Patient's usually have an extremely high temperature and heart

rate and may be delusional. Thyroid storm is precipitated by infection,

usually pneumonia, and it may occur after RAI or being suddenly taken off

meds. The thyroid hormone levels aren't dramatically different from those in

hyperthyroidism, and the cause has more to do with how the high levels of

thyroid hormone affect other chemicals known as catecholamines. 11 years ago

when I was diagnosed with GD, I didn't research this enough and thought it

could just occur out of the blue with no warning. This isn't the case.

Like you, I had symptoms of GD for a long time, probably 20 years or longer.

For me the predominant symptom changed over time and so did the severity of

symptoms. As is sometimes seen in GD, I had variable periods of remission.

I'm in tune with my body but never considered any of my symptoms that

serious. I would occassionally get into a rage and provoke fights with my

husband but I found that when I took B complex, extra B6 and magnesium I

mellowed out. Never did I suspect a thyroid disorder.

I think you were probably in tune with your body but your predominant

symtpoms were psychological ones and you never considered an organic cause.

Untreated, these psychological symptoms could have worsened but now that your

hyperthyroidism is getting under control, that's unlikely.

Many of the symptoms in GD are caused by the severe nutrient deficiencies we

have. For years I had amenorrhea (no periods) but when I began taking calcium

and lots of supplements, I started having periods which eventually became

sort of regular.

With psychological problems, B vitamins are commonly the most deficient. Let

me know if you have more questions on this. elaine

[Guest guest]

Dear Elaine,

I know that B vitamins are important to health, and to mental health. I've

been told by many alternative practitioners that I don't metabolize my Bs

properly, which causes me to be deficient. I've been taking vitamin drips

(which I've mentioned on this board), but would like to find another way to

take a good amount of Bs, and utilize what I take. I read that those who

don't metabolize Bs properly are lacking a certain enzyme, but I don't

remember what it was. Do you know anything about this? Maybe many of us

have this problem, which might have contributed to hyperT.

AntJoan

[Guest guest]

Elaine, thanks for this message. I don't rage because anger was not an

acceptable emotion growing up, but I do " stew " about things a lot. I never

recognized the profuse sweating in my head as anything other than being

really hot and not able to perspire properly elsewhere. The night sweats I

thought were menses related, but now it's been confirmed that I'm not

peri-menopausal. Goodness, I wish I'd had an intuitive physician years ago,

or had been able to better verbalize my symptoms. It's water under the

bridge and I now have some great resources.

=====

Bonner

Re: Elaine

> Hi Bonner,

> Thyroid storm is a rare condition characterized by exaggerated symptoms of

> hypertension. Patient's usually have an extremely high temperature and

heart

> rate and may be delusional. Thyroid storm is precipitated by infection,

> usually pneumonia, and it may occur after RAI or being suddenly taken off

> meds. The thyroid hormone levels aren't dramatically different from those

in

> hyperthyroidism, and the cause has more to do with how the high levels of

> thyroid hormone affect other chemicals known as catecholamines. 11 years

ago

> when I was diagnosed with GD, I didn't research this enough and thought it

> could just occur out of the blue with no warning. This isn't the case.

> Like you, I had symptoms of GD for a long time, probably 20 years or

longer.

> For me the predominant symptom changed over time and so did the severity

of

> symptoms. As is sometimes seen in GD, I had variable periods of remission.

> I'm in tune with my body but never considered any of my symptoms that

> serious. I would occassionally get into a rage and provoke fights with my

> husband but I found that when I took B complex, extra B6 and magnesium I

> mellowed out. Never did I suspect a thyroid disorder.

> I think you were probably in tune with your body but your predominant

> symtpoms were psychological ones and you never considered an organic

cause.

> Untreated, these psychological symptoms could have worsened but now that

your

> hyperthyroidism is getting under control, that's unlikely.

> Many of the symptoms in GD are caused by the severe nutrient deficiencies

we

> have. For years I had amenorrhea (no periods) but when I began taking

calcium

> and lots of supplements, I started having periods which eventually became

> sort of regular.

> With psychological problems, B vitamins are commonly the most deficient.

Let

> me know if you have more questions on this. elaine

>

>

>

>

>

[Guest guest]

Elaine, I think the Tapazole might be too high as I'm sleepy now alot and

have gained 10 pounds plus the swelling..do you? thanks Kim If it is too

high wonder why I am still getting short of breath?

[Guest guest]

Hi Kim,

When you go to your next dr. appt. (is it next week?) tell him about your

hypo ymptoms. Often, the dose is reduced at this time. Tell him about your

shortness of breath too. It may not be related to your GD. Perhaps you can

get him to schedule some pulmonary function tests.

[Guest guest]

Hi Elaine, I don't think we have talked. My daughter was diagnosed in Feb

with AIH and in March with Cirrhosis. She is 27 years old and was not able

to tolerate Imuran either. Her Hepatologist replaced it with another med.

but I don't know the name of it. Would be glad to find out if you would

like? She wasn't able to keep food down and felt sick to her stomach all the

time. What ever he changed her to is working much better. I just hope it is

just as good as the Imuran. Take care and God bless. Genny/Jodi's Mom

[Guest guest]

Hi Elaine, I will ask her next time I talk to her. I know she won't be home

tomorrow night but will get back to you ASAP. Take care, Genny

[Guest guest]

Hi Elaine, I got back to you as soon as I could. The Hepatologist replaced

Imuran with Mercaptopurine. If you are as sick as she was on Imuran I know

you're suffering. This med. seems to agree with her much better. Hope I

have been some help. Take care and God bless, Genny/Jodi's Mom