Re: NewbieQ's - confused & scared (long)

October 17, 2003

Hi Carol,

Try to relax, though I know it's scary when first diagnosed. Stress is our

enemy. Please be assured that learning about this disease and its

management will not be hard for you. Thankfully, the concepts and details

are easy enough for the lay person to understand, and should be rather easy

for an RN. Once you are taking medication, I believe things will start

coming into focus for you.

What you need to get is antibody testing -- perhaps this is what your

doctor has done, and it does take a while to get those results (at least

for the TSI test). TSI and TPO-antibodies are the best to start with. TSI

is responsible for GD. Until you get these antibody tests, your diagnosis

remains in question. You should also have an ultrasound, to see if there

are nodules.

I am at the point (at least right now) where I don't waste my breath

educating doctors. This is just where I'm at, so that doesn't mean you

should be. I just find that doctors " know what they know " and they have a

wall up for the most part when it comes to a patient. But others have had

other experiences. Basically what I'm trying to say is that as long as you

know what you need, then you are less dependent on a doctor. And NO ONE can

force you to have surgery! Perhaps if you put your foot down and say that

you want to use medication as your treatment, even this doctor can treat you.

If you don't luck out with finding a good endo, then any good doctor (even

a GP) can manage your care, at least if your case is straightforward enough

and you are responding well to the medication (meaning that your FT3 and

FT4 levels stabilize at the right point for you and things are under control).

From what I understand, there is little difference between Tap and PTU,

generally speaking -- they are both effective, and I haven't heard of

advantages of one over the other. Maybe someone at Mediboard.com has other

information. Though PTU has a shorter half-life, both should ideally be

taken 3 times a day. If your case is mild, perhaps you should try the Tap,

as it is likely a better choice when one is taking a very small amount per

day (and thus can't be taken 3 times a day). If you have an allergic

reaction to one (which is rare), then you can take the other, as they are

chemically different.

Stick to your guns, and you will find a way.

At 09:20 AM 10/17/2003, you wrote:

>On Sept. 4th, I went in for a routine physical. I'd been feeling strange,

>but nothing major - just wanted to get checked out. While I was there, I

>told my DO I'd become very forgetful, absent-minded, easily distracted,

>fog-brained.

October 17, 2003

Hi Carol,

Ask for your FT4 and FT3 results, and hopefully your doctor ran both of these

tests. Otherwise, it's hard to know what dose of meds you need. Tapazole is

reported to have fewer side effects and it may offer more protection against

thyroid eye disease.

The usual starting dose is 30 mg taken in 3 divided doses.

Usually, it takes about 6-8 weeks for the hormone stored in your gland to get

used up. At this time your FT4 and FT3 should be normal or low and your dose

is slowly reduced. TSH can stay suppressed for a long time so shouldn't be

used to monitor your therapy. The usual maintenance dose is 2.5-10.0 mg daily.

Once your levels are reduced and you're feeling better, you can work on your

own plan, determining if you want to remain on ATDs or go a holistic route.

Most everyone can achieve remission on ATDs. That is, they stop producing TSI,

the antibodies that are responsible for GD.

You should also have a test for TSI to make sure you do have GD. This is the

only definitive test. The RAI-uptake can suggest GD but not confirm it. If you

have thyroiditis or another cause of hyperthyroidism, treatment may differ.

And if your thyroid hormone levels are normal and you have subclinical hyperT,

you may only need beta blockers to reduce symptoms, rather than ATDs. Sounds

like you would be wise to take charge of things.

By the way, in the lab where I work, we have 30 minutes to turn out stat

thyroid function tests. Most hospital labs have this capability. Best, Elaine

October 17, 2003

Carol, while you may think your options are limited, please speak with

your dr and make sure he/she understands that while you realize that

remission is not 100%, you'd like the opportunity to try to achieve

that for yourself. While all the dr's may say at this point that they

want to see surgery as a means to the end of this disease, I'd bet if

you let them know how you 'really feel', you may find that they will

try this approach.

I was diagnosed in Nov/Dec 2001 and have been on Methimazole (generic

Tapazole) and am now down to 5 mgs daily, and getting ready to maybe

go to 2.5 mgs along with my Atenolol that I take for heart palps and

high blood pressure.

I just went to the dr for more blood work, so I'll know soon if my TSI

test is normal, along with the other tests. If I'd listened to all 3

dr's who told me RAI was the way to go, I'd not have a thyroid now,

but I chose not to. I think they have to give you the options, then

let you choose. You're in the right place to learn now, so this will

help tremendously.

Sandy~Houston

On Fri, 17 Oct 2003 08:20:03 -0500

" Carol Moxley " wrote:

October 17, 2003

Thank you, , Sandy, and Elaine! I can't tell you how touched and

relieved I am that there are folks like you, willing to advise and help. It's

just so reassuring!

The latest: Endo called in RX Tapizol 10mg to start me; I begin tomorrow.

Blood draw in 2 weeks. Dr.'s appt. Nov 11th. He wants me stable for an

RAIuptake. The nurse is mailing copies of all my labwork to me. The Dr's

office also has a number you can call, enter your SSAN and get your lab results

by phone - the caveat: it takes about a week for them to get results into the

system.

Questions: How long does it usually take to start feeling better once on meds?

And once I'm feeling better, can I go back to my normal activities or should I

wait a bit? I haven't been able to do yoga for the past 3 weeks - joints are

stiff and I have no strength. I do so miss the exercise! Also, I have beta

blockers, but they drop my BP to 80/40 so I don't take them. Kind of scary.

Should I try a 1/2 dose? The endo said to forget about them - that I don't need

them, but a resting pulse of 138 sort of makes me think I need *something*, no?

'Nother question: http://www.webpak.net/~deecee/spouseletter.htm isn't coming

up for me. I feel this might be very beneficial for my dh. He's been so

wonderful through all of this and wants to know how he can help me, but I just

can't answer that for him. Is there anything else on the 'net similar to the

above letter that he could access?

And I should have Elaine's book " GD a Practical Guide " delivered to the house

by Monday. I am very anxious to read it. Perhaps then I won't have so many

questions. lol !

Thanks again!

Carol

October 17, 2003

this is one I have bookmarked for family and friends for how this disease

affects us and just how seriously it can manifest itself in our everyday lives.

I know my hubby wishes that I wasn't so emotional right now, but I've never been

much on loss and have recently lost a pet that I've just bee worried to death

over. This link came off of the mediboard site, and it may help.

http://home.velocitus.net/deecee/information.htm

I can tell you this about recovery. Mine was slow coming but it was because of

a Dr Dummie who overmedicated me on atd's which caused hypoHell, so after being

on meds for almost 2 yrs, I've not felt this good since before I got sick in Oct

2001. I was tested in Nov, got my results and scan and atd's in Dec 2001, and

if my dr had knew what he was doing, I'd prolly have felt better sooner. I

don't do any type of strenous exercise even to this day. I never enjoyed it

before, although I have no problems with doing a brisk walk, and have done much

walking lately. Just be sure you don't overtax your system, cuz when it hits,

and if you overdo it, you'll know real quick. It's better to take it one day at

a time, and learn what you can and can't do till you feel optimal. I do have

to say that I've not felt this good in a very long time. :-)

Sandy~Houston

Re: NewbieQ's - confused & scared (long)

Thank you, , Sandy, and Elaine! I can't tell you how touched

and relieved I am that there are folks like you, willing to advise and help.

It's just so reassuring!

The latest: Endo called in RX Tapizol 10mg to start me; I begin tomorrow.

Blood draw in 2 weeks. Dr.'s appt. Nov 11th. He wants me stable for an

RAIuptake. The nurse is mailing copies of all my labwork to me. The Dr's

office also has a number you can call, enter your SSAN and get your lab results

by phone - the caveat: it takes about a week for them to get results into the

system.

Questions: How long does it usually take to start feeling better once on

meds? And once I'm feeling better, can I go back to my normal activities or

should I wait a bit? I haven't been able to do yoga for the past 3 weeks -

joints are stiff and I have no strength. I do so miss the exercise! Also, I

have beta blockers, but they drop my BP to 80/40 so I don't take them. Kind of

scary. Should I try a 1/2 dose? The endo said to forget about them - that I

don't need them, but a resting pulse of 138 sort of makes me think I need

*something*, no?

'Nother question: http://www.webpak.net/~deecee/spouseletter.htm isn't

coming up for me. I feel this might be very beneficial for my dh. He's been so

wonderful through all of this and wants to know how he can help me, but I just

can't answer that for him. Is there anything else on the 'net similar to the

above letter that he could access?

And I should have Elaine's book " GD a Practical Guide " delivered to the house

by Monday. I am very anxious to read it. Perhaps then I won't have so many

questions. lol !

Thanks again!

Carol

October 17, 2003

Hi Carol,

You do NOT need the RAI uptake scan. This scan is outdated and unnecessary,

unless you are going to do RAI. I had the scan done before I knew anything,

and I became more hyper and my eyes reacted. If I knew then what I know

now, I would have refused it flat out. They told me " it is completely

harmless " ; well, they didn't even have the courtesy to give me the

non-destructive form of the iodine (gave me a small amount of the

destructive 131). If you have an ultrasound, you will find out what you

need to know at this point from the RAI scan, which is whether you have

nodules. The TSI antibody test is the definitive test for diagnosing GD, as

well as indicating whether you are in remission. The only reason I can

think of to have the RAIU scan is if there are nodules found on the

ultrasound, and even then, I'm not sure if it would be necessary or if one

should have a biopsy instead; hopefully it will be a moot point for you,

and no nodules will be found.

Please read up on RAIU scans and RAI before you decide to go that route;

RAI is permanent, and 30% of people who have it don't do well afterwards

(especially if they have eye involvement). At Mediboard, the Thyroid

Awareness 101 thread is a good place to start learning about RAI. You can

also ask folks there about thyroid-related issues.

When first on ATDs, most people start to feel better in a matter of weeks.

It really is best to avoid any exercise now, given your elevated HR -- you

don't want to put more stress on your heart, as it can cause permanent

damage. Gentle walking and stretching should be fine. Relaxation and rest

are best. Consider it a vacation, and give yourself permission to pamper

yourself. You can exercise again when your FT3 and FT4 are within the

normal range.

At 06:13 PM 10/17/2003, you wrote:

>Thank you, , Sandy, and Elaine! I can't tell you how

>touched and relieved I am that there are folks like you, willing to advise

>and help. It's just so reassuring!

October 17, 2003

Again, thank you . I do have a lot of concerns about RAIU scans and I am

very glad to know that testing for TSI is a viable argument against the RAIU.

Will definitely holster this to draw out when the endo starts talking in that

direction again. I did have the ultrasound a couple of weeks ago - no nodules.

I so appreciate your input.