Re: Thyroid levels and surgery

[Guest guest]

> I just got back the results of my bloodwork, and my thyroid is still

> hyper

> after 3+ years of trying to regulate it. Here are my levels:

>

> TSH < 0.01 reference range 0.40-5.50

>

> T4 Total 28.6 reference range 4.5-12.0

>

> T3 Uptake4603 reference range 27.8-40.7

>

> T4 Free,Calculated 13.24 reference range 1.53-3.85

Hi Elise. I'm sorry I don't remember enough details to comment more

intelligibly on this. When you say you've been trying for 3+ years have

you been under competent care the whole time? Sometimes the key is simple

as having an endo prescribe the ATD competently. Were you ever started at

an appropriate high maximum dose (300, maybe 450) then gradually (like 50

mg at a time) decreased, then gently weaned off it? Also, did you ever

try Tap?

> I have to have anesthesia so I can get some dental work done, and I

> also

> suffer from gallstones..I've been told I can't have any anesthesia

> because my

> heart and blood pressure could go out of wack and the Dr would have

> a hard time

> controlling it..it could be deadly.

How about novocaine, the kind without - can't remember the name, somewone

will jump in with the answer - the stimulant?

> I'm taking PTU 3X a day and now taking a beta blocker..Toprol 1x a

> day..what

> else can I do??

You are in a bind, because if you had a true trial of both ATDs and they

wouldn't work the next logical step might be thyroidectomy, which isn't

an option for you. There's actually another step - alternative medicine,

and were I in this situation I would look into the herbal remedies -

bugleweed and lemonbalm. One has to find a really skilled practitioner,

and I just found out that the holisitic MD in my area who's on my

insurance does NOT have adequate experience with GD, despite his highly

respected status. So that's not easy.

If you haven't done this already could you provide us with an overview of

these past 3 years? I've had very full mailboxes this week so forgive me

for not remembering.

Take care, Fay

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[Guest guest]

Elise,

The big problem here is that they are testing you with outdated, fairly

easily skewed tests. You should get results from Free T4, Free T3--not these

uptakes and such. You may not be as hyper as these tests indicate as many

other factors influence these results.

Also, you don't mention your symptoms other than the weak legs. What's your

pulse like for instance? How are you sleeping? Sometimes it's easy to assume

we have symptoms from the cause we expect to get them from, and occasionally

it turns out we're wrong--it's happened to me a few times. Basically, the

better the info you have, the more you can figure out what to do!

Terry

> From: elisenj732@...

> Reply-To: graves_support

> Date: Fri, 14 Nov 2003 06:19:50 EST

> To: graves_support

> Subject: Thyroid levels and surgery

>

>

> I just got back the results of my bloodwork, and my thyroid is still hyper

> after 3+ years of trying to regulate it. Here are my levels:

>

> TSH < 0.01 reference range 0.40-5.50

>

> T4 Total 28.6 reference range 4.5-12.0

>

> T3 Uptake4603 reference range 27.8-40.7

>

> T4 Free,Calculated 13.24 reference range 1.53-3.85

>

> I have to have anesthesia so I can get some dental work done, and I also

> suffer from gallstones..I've been told I can't have any anesthesia because my

> heart and blood pressure could go out of wack and the Dr would have a hard

> time

> controlling it..it could be deadly.

> I'm taking PTU 3X a day and now taking a beta blocker..Toprol 1x a day..what

> else can I do?? I really have to get this under control. Right now my legs are

> very weak and it's hard to go up stairs etc..Any advice? So many of you are

> so knowledgable. I'd appreciate any input.

> Thank you!

>

> Always,

> Elise**

>

>

>

[Guest guest]

In a message dated 11/14/2003 9:53:15 AM Eastern Standard Time,

cfyoung4@... writes:

When you say you've been trying for 3+ years have

you been under competent care the whole time? Sometimes the key is simple

as having an endo prescribe the ATD competently. Were you ever started at

an appropriate high maximum dose (300, maybe 450) then gradually (like 50

mg at a time) decreased, then gently weaned off it? Also, did you ever

try Tap?

I was put on PTU from day one of my being diagnosed with Hyperthyroidism.

Having a poor memory, I've sometimes forgotten to take it, although the first

year I was pretty regular about it.

This past August I had RAI and was given 10 mili something or others as my

dose. Since having the RAI, my thyroid levels have gotten worse, not better. The

Dr said if it doesn't get under control by about March or April, I may have

to have another dose of radiation.

I didn't think I'd mind being Hypo..at least you can have anesthesia and

won't have all the heart related problems being Hyper can cause.

Being Hyper is holding up alot of things in my life, such as weight loss

surgery, and oral surgery so I am finally able to stop worrying about a loose

bridge I am dealing with now.

I have alot of stress in my life, and issues that I have to deal with. What

types of stress relievers are there to help me?

I'm a single mom living on a small income. I work 40-50 hours a week. I'm

very heavy and while that's a burden, being Hyper is taking its toll on me.

It figures that the one symptom of Graves Disease I'd LOVE to have is

loosing some weight, but that's not happening...

Thanks for letting me vent.

Always,

Elise**

[Guest guest]

> This past August I had RAI and was given 10 mili something or others

> as my

> dose.

I guess I forgot. I wouldn't have asked you to rehash your experience as

there would have been no benefit to you to do that.

> I didn't think I'd mind being Hypo..at least you can have anesthesia

> and

> won't have all the heart related problems being Hyper can cause.

Just for the benefit of newbies here, there are precautions to take when

hyper but with proper ATD therapy hyperthyroid can be brought under

control.

> Being Hyper is holding up alot of things in my life, such as weight

> loss

> surgery, and oral surgery so I am finally able to stop worrying

> about a loose

> bridge I am dealing with now.

I would sooner consider thyroidectomy then another course of RAI. The

pre-treatment for surgery makes anesthesia safe. I can't imagine the

hassle of being out of commission for the time recovery from surgery to

take with your responsibilities, but then again, RAI means being away

from your kids and limiting interaction with others also.

> I have alot of stress in my life, and issues that I have to deal

> with. What

> types of stress relievers are there to help me?

Humor, spirituality, exercise - even a 15 minute walk.

> I'm a single mom living on a small income. I work 40-50 hours a

> week. I'm

> very heavy and while that's a burden, being Hyper is taking its toll

> on me.

> It figures that the one symptom of Graves Disease I'd LOVE to have

> is

> loosing some weight, but that's not happening...

Don't feel too bad about not losing weight - a great deal, or all, of it

might have come back.

I wish you well and wish I had more concrete advice for you. I just know

of too many people who had RAI repeated and still ended up having

surgery. I have to wonder about your endo. Something you may want to look

into, since it's almost inevitable that you'll end up hypo at some point

is how well your endo treats his hypo patients - is he willing and

experienced to use all the recognized hormone supplements out there,

especially the ones that address the T3 hormone such as Cytomel or

Armour, or is it synthroid or bust with him?

Take care, Fay

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[Guest guest]

At 08:06 PM 11/15/2003, you wrote:

>ok-what is ATD therepathy?

Antithyroid medication (PTU, Tap, MMI or Carbimazole).

> next question....is it better to be on a diet(my doctr laughed when I

> said this-I was talking about eating certain foods-she said I had lost

> enough weight) when you are hyper

Avoid iodine (you may want to do your own research as to sources. Common

ones are seafood/shellfish, kelp, dairy). Also, avoid artificial sweeteners

(especially aspartame), artificial flavorings (such as MSG), alcohol,

stimulants (caffeine), and immune system stimulants (echinacea, ginko,

goldenseal). And, no smoking!

>...and 3....is this disease going to affect me enough that my husband

>should knw(we are seperated)?

That is a personal decision, depending on many factors.

[Guest guest]

On Sat, 15 Nov 2003 17:06:31 -0800 (PST) Carolyn

writes:

> ok-what is ATD therepathy? next question....is it better to be on a

> diet(my doctr laughed when I said this-I was talking about eating

> certain foods-she said I had lost enough weight) when you are

> hyper...and 3....is this disease going to affect me enough that my

> husband should knw(we are seperated)? I'm sorry-I have so many

> questions.

ATD therapy refers to anti thyroid drugs. This is a treatment for Graves

Disease. These drugs suppress the thyroid hormones that people with GD

over-produce, are taken for about 12-24 months, sometimes longer, until

the patient has normal thyroid levels and antibody levels. The drugs are

methimazole (referred to as Tapazole, Carbimazole, and Neomercazole [not

sure about the last]) and PTU. This is the treatment I had and I am now

off all medication.

The other two methods of treatment are surgical removal of the thyroid or

destroying the thyroid with RAI (radioactive iodine). These 2 methods as

practiced now will almost definitely leave the patient hypothyroid and

having to deal with life-long thyroid hormone replacement.

I'm so sorry that you're separated and hope this wasn't due to the stress

of your illness. I hope that your relationship, if beyond hope, is still

cordial. Should you have your thyroid removed you will need time to

recuperate and will need another adult you can work closely with to help

with the children and care for you. RAI involves limiting close physical

contact. Were you told of all the precautions? As a single mother you

would be in an especially difficult position for the minimum separation

time required.

On a side note, can anyone on the list chime in with a realistic list of

the precautions and time frames necessary to be taken for someone having

RAI? The scientists among us who've had it had lab counters to let them

know when the RAI was safely out of their systems - what should a lay

person do? (Actually, as the overwhelming majority of members of this

group will say, DON'T have RAI to begin with. But I want to know what the

real picture is as opposed to the glib picture the medical establishment

sometimes gives their patients.)

Take care, Fay

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

At 08:20 PM 11/15/2003, you wrote:

>is it ok to drink caffine free drinks?

Yeah, but best to avoid those that have nutrasweet. Soft drinks are not

great for us (or anyone), as high-sugar items can negatively affect the

immune system. Whole foods and natural drinks are best for us.

[Guest guest]

Nothing is better than water. I drink fresh juice (orange or grapefruit)

diluted with water. Water with lemon is good. I also drink iced

decaffeinated green tea -- brew it and put it in the fridge.

Milk is good for calcium. I hear that it has iodine, so take that into

consideration when choosing your foods for the day (we are supposed to have

no more than 150 mcg/day). Goitrogens can off-set the iodine some; those

are recommended for hypers. They include foods from the brassica family,

such as broccoli, cauliflower, cabbage, and more.

And from reading your other post, why wouldn't you tell your husband about

what you're dealing with?

At 11:30 PM 11/15/2003, you wrote:

>could you tell me what natural drinks?I feel like milk and water are the

>only thing I can drink now and that is what I have been doing a lot

>of-that along with the Sunny D juice -( I used to hardly ever drink water

>or ilk but love them now-I can take an 8 oz bottle water and drink it in

>one sitting now)what are some more natural drinks I might consider?

>carolyn

[Guest guest]

Hi Carolyn,

One thing pops out at me from your letter: often, GD is brought on by a

stressful event in one's life. For me, the death of my father. I think if

you were going through such a trying time in your marriage, it could very

well have hastened the arrival of the disease. Not that it matters at this

point, but I thought you might like to know that!

Terry

>

> Reply-To: graves_support

> Date: Sun, 16 Nov 2003 04:49:00 -0800 (PST)

> To: graves_support

> Subject: Re: Thyroid levels and surgery

>

> everybody thought my weigt loss and fatigue was because of stress from this

[Guest guest]

That sounds right on, Carolyn. Good for you. You are doing what you need to

do to come to a resolution, one way or another.

At 01:36 PM 11/16/2003, you wrote:

>hummmm.... Teri thanks for this-I didn't kow that.I have been considering

>this for a while and my friends all tell me I should get a divorce.So this

>morning I sat down and composed a letter to send to my husband's mother

>since SHE knows where he is and in the letter I was very nice but I told

>him that it is time to make a decision(I don't mean to sound like a whinny

>baby) but I have this Graves to deal with for the rest of my life and he

>is either in the long haul with me for it-or he is out.I don't need to

>hang on to hope anymore because I have enough to deal with.I still love

>him and if he wants to work it out then I am willing but if he wants to

>call it quits-I will accept that too.I don't need the extra stress right

>now of holding on.

>Carolyn