Re: Re: Back to Hyper, any suggestions?

May 16, 2003

I'm with Elaine on this. Each and every part of our body should be kept if

all possible in its natural form unless you don't have a choice.

I'm going up and down between hyper and hypo. The doctors just can't seem

to find the right dosage for me at this time. I'm still trying to fix it

with Tapazol. By the way, Elaine, any suggestions?

Pam

May 16, 2003

" Consider that,

Rheumatoid arthritis is also an autoimmune disease. But, fortunately, limbs are

not being amputated nor radiated.

Diabetes mellitus is also an autoimmune disease. And, fortunately, the pancreas

is not being removed or radiated.

What is the point of irradiating and killing thyroid glands,

which are fundamental for life?. "

http://www.geocities.com/ibayoa/gravesdisease.html

Elaine

Drawing on my fine command of the English language, I said

nothing. -- Benchley

Hello light_remote

On Friday, May 16, 2003, you wrote

> Dearn AntJone and Maggie,

> I am new here and also want to express my own point of view here

> based on my reading and learning. No offensive for anyone.

> For RAI, looks like if you want to finally kill this disease we have

> to adopt this drastical method. Otherwise re-occurence is pretty

> often after re-mission and you never know when. If refuse RAI, which

> often means you have to take mathimazole or PTU in most of your rest

> life. I believe those two medicines have much worse impact to our

> body than hormone supplementals. I read a lot of people here after

> 10 ten years battle with hyper and still in the struggle. I feel if

> those people took RAI at the beginning and they will suffer much less

> now. I am very concern of my self fate like those people. I don't

> want to fight with this hyper forever. And looks like the bio med

> scientist cannot develop new drugs to address antibody directly in

> the forseeable future.

> If developed hypo, and doctors say it's much easy to treat with

> almost no side effects. Also we can adjust the dose of hormone

> everyday to find the suitable dose for us.

> If my understanding wrong pls correct me.

> Sincerely,

> remote

May 17, 2003

In a message dated 5/17/2003 10:40:05 AM Eastern Daylight Time,

kiropi2003@... writes:

> But I am just worrying the long term consequences

> about taking the drugs for such a long time.

Dear Maggie,

From what I have learned, there are very little adverse consequences for

taking the drugs--one person on this board has been on them about 22 years,

and is fine. In Europe, long-term use is common, and RAI is rare. The side

effects and consequences for RAI are much more frightening and long-term. If

you take meds, you can take lots of supplements, such as milk thistle, to

protect the liver or guard against other adverse effects. And, if worse

comes to worse, you can stop the meds and stop the effects. Once you have

RAI, you start a chain reaction in your body that you have no control over.

Elaine has listed side effects from RAI, which are truly scary. I thank God

every day I refused to listen to the doctors and took Tapezol and Atenenol.

After a few months of this, and modifying supplements and diet, I was fine,

and have been fine for over 5 years. To my mind, RAI causes more problems

than it purports to help, and, as I said before, does not address the cause

of the illness.

Best,

AntJoan

May 17, 2003

Hi Maggie I worry too about the long term effects of Tapazole or other anti

thyroid drugs. I have had a goiter since my late 20's. I was tested

repeated thru my 30's and was always told my thyroid was normal. Finally in

my 40's I was put on Tapzole and after a while I when out it. I self

medicated thru my 40's. I'm now 51 and my endo. thinks I will probably be

on it for the rest of my life. I have a singular toxic nodule and not

Graves.

I questioned him about the long term effect and he said he has several

patients that have been if for 20 years with no problems. He said no long

term surveys or tests have really been done to know if other problems can

develop from the medication.

Another endo. I went to refuse to prescribe Tapazole and insisted I have RAI

or surgery saying he felt I was too young to be on it long term that it was

dangerous. When I questioned my current endo about why the other dr. felt

that way about Tapazole, he said he had no idea why.

Sandy

May 17, 2003

Hi Maggie,

Hyperdefecation (condition of increased bowel movements) is a common hyper

symptom. It's due to food being digester faster.

While serious side effects are rarely seen with ATDs, when they occur they

usually occur within the first 4 weeks of starting meds. ATDs can be used

long-term without problem. One of our friends has been on ATDs for more than

20 years. In Europe, where ATDs are primarily used, many people remain on

them long-term. These maintenance doses are also much lower than the starting

doses. Most everyone can be maintained on about 100 mg PTU or 2.5-10.0 mg

methimazole (Tapazole) daily, and whatever med you're on, it's best taken in

divided doses. Take care, Elaine

May 17, 2003

Hi Remote,

Having had RAI and been hypo for 12 years, I'd like to comment that hypoT is

not easy to treat. My levels fluctuate a great deal and I feel far worse than

I ever did when I was hyper. The quality of my life and health has been

seriously compromised by RAI.

GD is an immune system disorder. Destroying the thyroid gland does not solve

the problem. If it's not addressed and healed, the immune system goes on

destroying other bodily symptoms.

According to Harvard's P. Larsen remission is possible for most everyone

with GD. Good examples can be found in Europe and Japan, where RAI is

rarely used, and most patients achieve remission within 18 months, and rarely

do people end up on ATDs for more than 4 years. With proper monitoring and

appropriate doses, ATDs are safe and generally used short-term. With RAI,

once it's done, there's no going back, Elaine

May 17, 2003

In a message dated 5/17/2003 10:39:57 AM Eastern Daylight Time,

kiropi2003@... writes:

>

> Another thing that bothers me of being hyper is my bowel movement.

> Wonder if anyone have frequent bowel movements as a result of being

> hyper? Sometimes it's so severe and it gets very painful (smiliar to

> diarrhea). Doctor diagnosed that just the intestines are moving too

> fast. It's deepens the problem because I get very panic and my heart

> beats very fast if I can't find a bathroom right away. I even had a

> colonscopy before thinking I was having colon cancer of what. But

> after the result came out as negative, my endo said most likely is

> thyroid related.

>

I have no answers for you, but I have the same BM problems.

I am hyper and have 2 nodules. I underwent RAI. My Endo tells me that the BM

does have to do with the thyroid.

Before I went for my thyroid problem, I was going to a GI Doctor. He also

sent me for a colonoscopy for the same reason. But, in my case, the bowel

problem may have saved my life. Days before I was scheduled for the

colonsocopy, I started bleeding rectally. Come to find out, I had 8 polyps

and one was quite large and it was a bleeder. Thankfully they were all

benign.

I am 18 days post RAI, so it is too soon to know how it is going to affect my

BM's.

It is a terrible feeling. Sheer Panic.

Hope this helps.

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

May 17, 2003

Yes, they go hand-in-hand. As my ATDs kicked in, the movements

normalized since the body functions slowed to a more normal pace.

Remember that Graves runs the entire body at a higher pitch,

pulse, heartbeat, food movement, etc., etc.

Elaine

I am not young enough to know everything. -- Wilde

Hello thebetzz

On Saturday, May 17, 2003, you wrote

> In a message dated 5/17/2003 10:39:57 AM Eastern Daylight Time,

> kiropi2003@... writes:

>>

>> Another thing that bothers me of being hyper is my bowel movement.

>> Wonder if anyone have frequent bowel movements as a result of being

>> hyper? Sometimes it's so severe and it gets very painful (smiliar to

>> diarrhea). Doctor diagnosed that just the intestines are moving too

>> fast. It's deepens the problem because I get very panic and my heart

>> beats very fast if I can't find a bathroom right away. I even had a

>> colonscopy before thinking I was having colon cancer of what. But

>> after the result came out as negative, my endo said most likely is

>> thyroid related.

>>

> I have no answers for you, but I have the same BM problems.

> I am hyper and have 2 nodules. I underwent RAI. My Endo tells me that the BM

> does have to do with the thyroid.

> Before I went for my thyroid problem, I was going to a GI Doctor. He also

> sent me for a colonoscopy for the same reason. But, in my case, the bowel

> problem may have saved my life. Days before I was scheduled for the

> colonsocopy, I started bleeding rectally. Come to find out, I had 8 polyps

> and one was quite large and it was a bleeder. Thankfully they were all

> benign.

> I am 18 days post RAI, so it is too soon to know how it is going to affect my

> BM's.

> It is a terrible feeling. Sheer Panic.

> Hope this helps.

> Betty

May 22, 2003

Hi Light_remote

I too have GD. I 'rushed' into taking RAI and very much regret it. Before GD I

thought I was active and healthy. I still know I was much healthier than I am

now. I now take 7 different prescriptions daily plus 3 more on an 'as needed'

basis. I also take dietary supplements. Yes the RAI dealt with my

hyperthyroidism. It killed off my thyroid's ability to produce any hormone

within about 2 weeks. It was another 4 weeks until I used up my reserves in my

body.

We all make our own decision. I rushed into mine not realizing that this

rushing

was a part of having GD, just wanting to get on with my life. I was too

frightened to investigate alternative treatments. I wish I had but it's too

late

now. I have watched your questions and the responses you have received and am

moved to tell you one more time, be careful what you do because it's for a

lifetime. RAI does NOT CURE Graves Disease, it only trashes your thyroid

partially or fully and you still have autoimmune disease, with other potential

created by the use of RAI.

Kate

light_remote wrote: