Re: doctors visit today...me too

[Guest guest]

Welcome to our group Shelly !

Your first post took me way back in time. Gosh, I do remember not

understanding any of this. There are lots of us here, some old pros, and new

people all the time.

So you will be able to read the questions and answers to other new patients

too. That will help, because the repetition helps anytime we try to

understand a new subject.

On the home page, back where you signed up, there is a wonderful welcome

letter that Pam B put together just for folks like you. Did you find that

yet ?

Here is the link.

http://f3.grp.yahoofs

com/v1/AF1FPyg5k3vae1wOV1pXM9Rl6qmMogbxXrcar8BlKuXQsddaHmKMJ7m5nxNZV7bWw4dxHX

Yc6a6TZqPnzODf6UT_9o/open-letter-to-newly-diagnosed.txt

You know... I was just looking at this, and picturing seeing it as a new

person. It looks over whelming. Never noticed that before.

If you have a printer, I think the best thing would be to print it out, and

be able to study if in bits and pieces.

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Hi Shelly,

Welcome. I'm not familiar with Toprol-xl -- is it a beta blocker? If so,

then you are not on the medication to help you with Graves'. If that is the

case, then you have been mismanaged by your doctor.

If you are to be on medication for your condition, what you need are

anti-thyroid drugs (ATDs), which will help to bring down your thyroid

levels as well as decrease the antibodies causing the problem (it is not

your thyroid, but rather the immune system that is at fault). This can help

you to achieve remission, which is your goal. If you do not achieve

remission but do well on the ATDs, you can stay on them indefinitely. An

alternative treatment is bugleweed and lemon balm, which you can look into

if you are so inclined; but I would advise you to work under the care of a

naturopathic doctor or similar practitioner, as this is not a

do-it-yourself approach, and you would also need to get labs done as you

would with the conventional meds (ATDs).

Do not let anyone push you into a permanent treatment option, such as RAI

or surgery, without doing a lot of reading/research to know what you're

getting yourself into. Lots of doctors push RAI, and give a spiel that " you

just take one radioactive capsule, and then take one pill a day

(synthroid), and you'll be just fine. " Well, research shows that 30% of

people who have RAI are NOT just fine (I suspect this to be an

underestimate, as a recent post by Pam L contains a survey about the

prevalent problems suffered by those who are hypOT). If you get RAI, you

are almost definitely going to be rendered hypOT, and will be on meds for

life (an at the mercy of doctors who may not dose you properly, which

commonly happens). Thyroid eye disease (TED, or GO) is triggered or

worsened in about 30% of people as well for those who have RAI. If someone

has RAI done and regrets it, there is no going back.

I have decided RAI is not an option for me; I would prefer surgery if I

needed a " definitive " treatment. But for now, I am on a very low dose of

ATDs, and was also just diagnosed in June. So far, so good.

I am not sure that you even have a solid diagnosis. In order to diagnose

Graves', you need to get TSI antibodies (thyroid stimulating

immunoglobulins) tested. A test of TPO antibodies is strongly advised as

well. In addition, you need to get Free T3 and Free T4, in addition to the

TSH (this is a favorite of the docs, but it lags, so you should NOT be

medicated according to this test). An ultrasound of the thyroid should be

done, to see if there are nodules. You do NOT need the RAIU scan

(radioactive iodine uptake scan), as it is outdated and rather useless,

unless you are going to have RAI and they are trying to assess what dosage

to give you.

If you have Graves' and you decide to take the medication, you will be

prescribed PTU or Tapazole. A typical starting dose for PTU is 300, and for

Tap is 30, but it depends on how hyper you are right now. You should stay

on top of your labs, as many doctors are lax or simply don't know how to

use ATDs correctly. You will want to have labs done every 4 weeks for Free

T3 and Free T4, as well as WBC. Liver function tests should be done at 4

weeks, 8 weeks, and then every 3 months. You will likely need timely

reductions of your dose as you are on the ATD, until you stabilize at a

good level and then remain on a maintenance dose. It can take 8 weeks for

the ATD to have its full effect, as your stored thyroid hormone is used up

and new hormone production is blocked.

TSI and TPO-Ab testing should be done periodically (not more than every 3

months), but certainly at the time when remission is suspected, and before

weaning off the ATD. TSI should be <2% in order to be considered in

remission, and start tapering off.

Before you start the meds, you should have a liver panel and WBC done, as a

baseline. You will want to watch out for rashes, hives, and other side

effects (may simply mean your dose is too high), and there are more

serious, but very rare, side effects to be aware of, such as a rapid drop

in WBC (those on ATDs are advised to get a blood test immediately in the

event of sore throat, fever, or other sign of infection, in case there is a

drop in WBC). The package insert for the meds, as well as many other

sources, can go into more detail.

I believe we all need to be proactive in our health care, and that means

doing research and being able to partner cooperatively with our doctors.

This may mean having to go through a bunch of doctors to find " Dr. Right. "

Thus far, I have found that no doctor is perfect, but some are definitely

better than others.

From now on, you will want to get copies of all lab work and keep them in

a binder. Make notes as to how you were feeling that day, and attach those

to the labs. This will help you find your " set point " (the point at which

you feel your best). Normal ranges are just that -- ranges, and may not be

adequate for you to feel good. Everyone is different, at least to some degree.

Diet is important (avoid IODINE -- 150mcg is all that we should have, and

our diet often contains too much), and cut down/avoid all stimulants

(coffee, echinacea, ginseng), alcohol, and especially smoking. Smoking is

highly correlated with TED. Stress management is important, as stress is a

known contributing factor for Graves'. There are other things that can be

triggers for you, such as wheat, if you are gluten sensitive (those with

thyroid disease are at high risk for celiac disease, as well as other

autoimmune diseases; gluten sensitivity can be assessed with an

anti-gliadin antibody test).

I know this is a lot of info I am throwing at you. I hope you are not

overwhelmed. Don't worry, it will sink in, especially if you continue to

learn about this disease and the various treatments. There are good books

out there, like Elaine 's Graves' Disease: A Practical Guide, and

Thyroid for Dummies (I don't know the author). I would suggest you also go

to Mediboard.com, where many people post and can give you suggestions as

well as support; you can post your labs and get feedback.

If you are managed properly and you are involved in decisions for

treatment, I believe you will feel much better soon.

Best wishes,

At 07:33 PM 8/21/2003, you wrote:

>I need some info from anyone that would like to try and help me. I've had

>Grave's for awhile but just really found out in june.At the doctor's today

>they told me the meds i have been taking are not working . I've been

>taking Toprol-xl , and my heart still beats 120bpm. I'm not sure what to

>do or even what i'm looking at. I have no idea what is life and what i

>should run to the dr's for?

>

>please help

>

>shelly

[Guest guest]

On Thu, 21 Aug 2003 16:33:48 -0700 (PDT) SHELLY WOLANSKY

writes:

> I need some info from anyone that would like to try and help me. I've

> had Grave's for awhile but just really found out in june.At the

> doctor's today they told me the meds i have been taking are not

> working . I've been taking Toprol-xl , and my heart still beats

> 120bpm. I'm not sure what to do or even what i'm looking at. I have

> no idea what is life and what i should run to the dr's for?

Hi Shelly.

Something I've been focusing on with newbies is helping to establish

clarity. There are a lot of terms, a lot of info to assimilate, and

decisions to make that you can't take forever with.

So, first of all, make sure you have the tools you need: ink for your

printer, if you have one, a highlighter to highlight important points, a

pen for notes in the margin, and a good binder or folder to keep the info

in along with the results of all your bloodwork.

Next, you may have already heard that there are three options for Graves

- anti thyroid drugs (ATDs), total or partial surgical removal of the

thyroid, and radioactive iodine (RAI). RAI is the most popular treatment

for Graves but please don't go for it. At this point you may not have

even had all the proper tests to determine if you do in fact have Graves.

Even if you do, for reasons that you'll start to pick up RAI is the worst

possible option. Actually, there is a fourth option - alternative

treatment, most commonly herbal. But this has to be done by a very

skilled doctor or naturopath so the ATD route is probably the best for

you to start researching. I posted a message about ATDs under the addy

cfyoung2@juno in late February that I think breaks it down well; I'd only

slightly amend one or two things.

Please feel free to share bloodwork results; please include the ranges

your lab gives for normal since the ranges vary.

Most important, before you undertake treatment there are basic tests you

must have. If someone else hasn't addressed it yet (and I'm sure when I

get my next batch of mail I'll see that someone did) this has come up

quite recently. You can probably find it in one of the many wonderful

links, etc. on this list's homepage.

You mention that the drs. said the meds you've been taking haven't worked

yet. Even if you have been on ATDs sadly it's possible that your doctors

haven't administered them properly. It's very hard to accept the reality

of endocrinology as it's practiced in relation to thyroid disease. So

pardon the 3rd degree but here are some questions to help us see if

you've been medicated properly. If you have been taking the ATD PTU or

Tapazole

- what doses have you been on?

- when was your prescription changed?

- how many times a day did you take the medication?

I can guarantee that a week from now if you avail yourself of the

resources recommended in the Letter to the Newly Diagnosed that you will

understand a lot more and that it will only get easier after that.

Take care, Fay (in remission for 2 years after 14 months on Tapazole)

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[Guest guest]

Shelly, I was diagnosed with hyperT/Graves back at the end of 2001.

I was put on Methimazole, 30 mgs, and Atenolol 25 mgs. At my 3rd

appt, I was put on 50 mgs of Atenolol as my bp and my pulse rate

required it. I've done very well on atenolol. If your dr didn't put

you on an AntiThyroid drug, like Methimazole, or Tapazole, then

he/she needs to. I'm down to 5 mgs of Methimazole, and hope to have

that reduced soon as I just had my blood work done day before

yesterday. Suddenly I just have no energy after feeling great, so I

know something has changed.

There are some dr's who don't know how to treat a hyperT/Graves

patient, so you have to learn what is going on, and help him to make

the right choices for you. Don't get out of the dr's office without

copies of your labwork, so you can start your own file on this

disease. It'll help you know what is going on with you where

symptoms are concerned as to how you truly feel. I've had one dr who

either kept me on the drugs constantly for a year, or he'd take me

off of them completely, and that is NOT the kind of dr you want to be

treating you. I finally had to give the Endo up, cuz he just didn't

have time to deal with Graves. I'm back now with Endo#1 and we've

managed to take me from 30 mgs of Methimazole to 5 mgs and I'm still

functioning....and all this has been since March 2003. One day I

hope to gain remission, and most Graves patients either gain

remission or one day it's possible for the thyroid to wear itself

out....and die.

Sandy~Houston

-- In graves_support , SHELLY WOLANSKY

<slwolansky@y...> wrote:

> I need some info from anyone that would like to try and help me.

I've had Grave's for awhile but just really found out in june.At the

doctor's today they told me the meds i have been taking are not

working . I've been taking Toprol-xl , and my heart still beats

120bpm. I'm not sure what to do or even what i'm looking at. I have

no idea what is life and what i should run to the dr's for?

>

> please help

>

> shelly

>

>

[Guest guest]

Hi Shelly-

Yes, Toprol is a beta-blocker and they're trying to slow your heart down.

Take care,

> ,

> toprol is a beta blocker? they are trying to slow my heart down

with it?

> I am looking for a new Dr. but to go to an endocrinologist(lol) it cost

$250 up front. and if i had that much money i would have food in my fridge

to eat.lol

> So this is kind of hard but i will keep working to learn more.

>

> The only tests i've had done are thyroid scan uptake and alot of blood

tests. they said radiation is important and if i want to have kids to do it

now!

[Guest guest]

Shelly,

Wow... been there too.

It does get better. I promise.

But YOU will have to learn what is going on to make it better. The doctors

are obviously not doing a very good job of unerstanding the correct way to

dose the PTU.

This is a very common problem, and the reason groups like us exist.

Lots of help here.

I may be of help with you in particular, because I have no insurance and I

also took PTU.

I am completely O.K. now, and do not have to take the medication anymore.

You said:

propylthiouracil 50mg 3 times a day and also propranolol 10mg 2 times a day

*Propylthiourac ... we call this PTU for short. It is the antithyroid drug (

ATD )

*Propranolol... I took this too. Little green pill-. They are a beta blocker

to slow your heart down.

First... How long have you been taking each of these drugs?

Do you have copies of your lab results yet ?

It sounds like you are on the wrong dose, and may be hypo right now. This

causes horrible depression. As soon as we get more things figured out here,

and you are on the right dose, these terrible feelings WILL go away. They

are happening only because of the wrong dose !

Graves' does NOT do this to you.

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Shelly,

Wow... been there too.

It does get better. I promise.

But YOU will have to learn what is going on to make it better. The doctors

are obviously not doing a very good job of unerstanding the correct way to

dose the PTU.

This is a very common problem, and the reason groups like us exist.

Lots of help here.

I may be of help with you in particular, because I have no insurance and I

also took PTU.

I am completely O.K. now, and do not have to take the medication anymore.

You said:

propylthiouracil 50mg 3 times a day and also propranolol 10mg 2 times a day

*Propylthiourac ... we call this PTU for short. It is the antithyroid drug (

ATD )

*Propranolol... I took this too. Little green pill-. They are a beta blocker

to slow your heart down.

First... How long have you been taking each of these drugs?

Do you have copies of your lab results yet ?

It sounds like you are on the wrong dose, and may be hypo right now. This

causes horrible depression. As soon as we get more things figured out here,

and you are on the right dose, these terrible feelings WILL go away. They

are happening only because of the wrong dose !

Graves' does NOT do this to you.

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Me again Shelly,

Wrong .

The radiation is a very bad idea , plus it is expensive to boot !

You do not need to go to an expensive endo that may or may not know what we

are going to teach you.

You must get copies of those lab results. We can then tell you what they

mean.

IF you are badly overdosed, and hypo right now, it causes pain all over. It

causes depression. And it defiantly causes trouble breathing. Same with the

stopping breathing at night.

This can be very serious. So please tell us what those lab results say.

-Pam L-

[Guest guest]

April !

Oh my gosh !

You are supposed to have a FT4 every 4 weeks. ( and it is not expensive)

Lets start with what you have...

Plus add the normal range for that lab. They can be different.

Have you been on the same dose all this time ?

Why do they want to raise your dose if you don't have new labs ?

We need to be sure the others see the info you have, so they can help too.

Most of us work full time, so if I am missing you have the whole group. We

do best with lots of different ideas, and experiences.

Plus, if for example, I mess up and say something backwards, someone is sure

to catch it. LOL

-Pam L-

[Guest guest]

t-4 13.4

Next to this will be the 'normal' range. Yours will undoubtable show hyper,

but you do want to know how much off of normal you were to start with. Just

to be able to follow your progress.

This is a total T4 and can be falsely elavated by several things, including

estrogen. Yikes.

We always request a FREE T4, because it will show how much thyroid hormone

is in your blood , available for your body to use.

The bigger the number on this test, the more hyper.

____________

Now:

and tsh 0.01

TSH is the opposite. The smaller the number the more hyper we are. Your .01

is normal for us when we are first diagnosed, and it may or may not change

as you become hypo. That is because :

The antibodies in our blood interfere with the TSH test and therefore make

it unreliable for those of us with Graves. "

Never allow them to base your PTU dose on this number.

_______

do you know how to read an uptake scan? that was from june?

I can probably find info for you on this. The thing you want to see is if it

shows any nodules, and if they are hot or cold. Plain old Graves' will show

as evenly diffused... something like that. I never had a scan, so I am not

one to be the best in explaining them. We do see others post these results,

and there is always some one that can help you with it.

_________

My problem is that I 'think' you are saying they want to raise your PTU only

because your heart is going too fast ?

Very bad idea !!!!

IF you are overdosed on PTU... and it causes you to be hypo right now...

hypo can cause high blood pressure and rapid heart rate !

_____

Do you have a way to get some labs done ?

You NEED a FREE T 4 at the very least.

If you can get this only, say at your GP, that is the least expensive way.

you do not have to have a doctors appointment. You can get just the blood

draw.

If this is not possible, and you are not in California, I have a link to

HealthcheckUSA... they do lab work only. With no doctor .

It will cost you $75 for what you need, but it would take time for paperwork

I really think you need to check sooner, as increasing the PTU could make things

much worse... IF you are overdosed now as it sounds from what you are telling us

about your symptoms.

[Guest guest]

Hi Shelly,

As Pam said, radiation is RAI, and this is what we have been telling you --

many of us believe RAI is not in our best interest, and some here have had

very bad experiences with it. RAI does NOT fix the problem, it only makes

you hypOT (in almost all cases), which carries a whole set of other

problems, including the fact that you will need to be on thyroid

replacement hormone (like synthroid) for life or you die. So you will need

to get the same tests in order to stabilize on that drug. And many who have

had RAI and are on replacement hormone don't feel well -- not to mention

the increased risk of getting or increasing symptoms of thyroid eye disease.

You are going to need to make your own decision about which treatments you

are going to have, but I would urge you to do A LOT more research before

making a permanent choice such as RAI. Many people don't do well afterwards

(including some who consider it to have contributed to their fertility

problems), and I personally don't want to find out if I would fall into

that category.

I believe you are not being managed properly, which I understand is at

least partly due to your lack of insurance (I am not being managed that

well even tho I do have insurance, and the same is true for many others, so

don't feel so bad! We make efforts to be on top of things and need to steer

the ship.). I realize how difficult that can be, and my heart goes out to

you. Your health is a priority, and I hope you find assistance. But as Pam

says, there are economical ways of managing this disease. For instance, you

can adjust your doses according to the Free T4 test alone, which will cut

down your expenses (it is best to have Free T3 tested as well, but I

understand this is a more expensive test). Perhaps occasionally you can get

a TSH and an FT3, once you stabilize, so you get a better picture of what

is going on.

You may very well be hypOT right now, causing you to feel depressed. So my

suggestion would be to get that FT4 test (you can have it done at a lab)

ASAP. That way, you will know where you're at, which will guide your next

step in dosage (whether you should increase or decrease the PTU). At least

you are taking PTU -- which is the ATD. Once your thyroid levels stabilize

at a proper level, you should feel better and not need a beta blocker (only

a maintenance dose of PTU, which may be something like 50 or 100 mg per day

in divided doses -- you'll have to see what works for you). Best to take

the PTU three times a day, so use a pill cutter to get the doses even.

I am not familiar with the other meds you mentioned, other than propranolol

(which is a beta blocker, and will be unnecessary once your thyroid levels

come into the normal range). You will want to wean off that slowly, as

abrupt withdrawal is dangerous -- get your doctor's advice on this one. And

even if you don't see an endo (mine is not very useful anyway -- I

primarily use my GP), you should run dosage adjustments of all your meds

(PTU) by your doctor (perhaps via a quick phone call). As for the other

meds, ask your doc about them and also do your own research (look them up

on the Net).

If you get some books, like Graves' Disease: A Practical Guide, Thyroid for

Dummies or The Thyroid Solution, and also read the archives of this group

as well as at mediboard.com (starting with Thyroid Awareness 101), then you

should be able to help yourself tremendously. I urge you to read, read,

read, and be proactive (in charge) of your health care. Graves' is not a

disease which we can leave to the doctors to treat anyway, so we all need

to be up on the info.

And remember, these are only suggestions, as I am not a qualified medical

specialist. You need to decide what is right for you.

Best wishes,

At 02:19 AM 8/23/2003, you wrote:

>The only tests i've had done are thyroid scan uptake and alot of blood

>tests. they said radiation is important and if i want to have kids to do

>it now!

>

>

>With Light and Love

> Shelly

[Guest guest]

Pam, ya know.....I'm really starting to wonder how long I was hypoT from what

you just put in this message. If this is some of the things that I should have

known back then, after my second son was born, is when a lot of my hypoT

symptoms were in full bloom. I'd read I think in Elaine's book that we are

usually HypoT before we ever go hyperT, and that sure sounds like me. I can

remember hurting so bad that I couldn't hardly walk. It's also happened again

since the dummie dr let me go hypoT on the ATD's. grrrrr.

Sandy~Houston

Re: doctors visit today...me too

Me again Shelly,

Wrong .

The radiation is a very bad idea , plus it is expensive to boot !

You do not need to go to an expensive endo that may or may not know what we

are going to teach you.

You must get copies of those lab results. We can then tell you what they

mean.

IF you are badly overdosed, and hypo right now, it causes pain all over. It

causes depression. And it defiantly causes trouble breathing. Same with the

stopping breathing at night.

This can be very serious. So please tell us what those lab results say.

-Pam L-

[Guest guest]

*That might go over like a turd in a punchbowl so to speak,*

Sandy :-D

Never heard that one before... but it is SO true.

When I woke, I still can not be sure if she is hypo or hyper... the more I

think about it. BUT... either way, the solution is the same.

-Pam L- going to find cleaner for the computer screen after that one ... oh my

gosh... now I think I am getting a stitch in my side...

[Guest guest]

Pam, I just got back from taking my son out to eat. The entire time I kept my

head buried in a couple of books that I took along with me since I wasn't

hungry. I came to the same conclusion while I was browsing. There are some

charts in these books, which tell which they 'think' goes which way, hypo or

hyper, but it's just unclear at this point. Glad you liked my little saying, I

find it very true when dealing with some dr's who don't want me to know

'anything about anything'. lol. My late hubby used to say this! lol. It's

always been one of my favorites. :-)

Sandy~Houston

Re: doctors visit today...me too

*That might go over like a turd in a punchbowl so to speak,*

Sandy :-D

Never heard that one before... but it is SO true.

When I woke, I still can not be sure if she is hypo or hyper... the more I

think about it. BUT... either way, the solution is the same.

-Pam L- going to find cleaner for the computer screen after that one ... oh my

gosh... now I think I am getting a stitch in my side...