Re: NewToGraves

September 24, 2003

Hi Dawn,

I am in a bit of a rush at the moment, but I wanted to get to you some

information that I have compiled for newbies. Pam B's letter to the newly

diagnosed is also available, in the Files section of the site (2nd to last

listing): http://groups.yahoo.com/group/graves_support/files/

You should be started on medication right now, and at least a beta blocker,

to relieve your symptoms. You also should not gain weight abnormally when

your thyroid levels are stabilized in the normal range.

Here is the info I have for you; take your time with it, and try not to get

overwhelmed--things will start to become clear sooner than you think.

Hi,

Welcome. I know this must be a confusing time for you (it was for me, when

I was first diagnosed in 6/03), and the stress may be exacerbating your

symptoms. Best thing to do is try to relax, as you learn about your

treatment options.

Medication (ATDs, like PTU or Tapazole) should always be tried first. And

from what I have heard, most people do well on these meds as long as they

are monitored and dosed well, and are allowed to continue on the meds until

one is truly in remission. Even a lot of people who have incompetent

doctors fare well, if one is up to speed and basically knows how to manage

this disease. You, too, will become a pro, with some time and effort. The

learning curve may be steep in the beginning, but it definitely levels off,

so don't worry.

Medication is not hard to take, and how long one needs to be on it depends

on the person. If you decide you want to be on medication, 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). Herbs take longer to work, so

people who want to be on herbs often start with the ATDs and then switch over.]

Many people are given a beta blocker in addition to the ATD at the

beginning of treatment. These meds can help you to feel more comfortable

(reduce palpitations and other sympathetic nervous system symptoms) while

you are waiting for the ATD to take effect. When your thyroid levels come

down into the normal range, you should gradually taper off the beta blocker

under your doctor's advisement, as abruptly withdrawing from them can lead

to serious problems in the rebound. However, beta blockers are generally

safe if used properly.

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 (and 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. 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. I had the

RAIU scan before I knew anything, and I did have an increase in symptoms

(along with elevated thyroid levels) after that scan.

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. Both of these

medications are best taken by dividing your daily dose by 3 and taking them

8 hours apart (you can get a pill cutter at the local drug store - you will

probably need it). 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 "

(or at least " Dr. OK " ). 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; make sure there is NO iodine in

supplements you are taking), and cut down/avoid all stimulants (coffee,

colas, ginseng, ephedra, nasal decongestants, etc.), alcohol, items that

stimulate the immune system (i.e., echinacea, goldenseal, zinc), and

smoking. Smoking is highly correlated with TED. Aspartame (nutrasweet) and

flavorings (i.e. MSG) are bad for us. Stress management is important, as

stress is a known contributing factor for Graves' (may even trigger it).

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 (either on Mediboard or to this

group) and get feedback (include the range for each test result, as they

vary). A good place to start at Mediboard is the Thyroid Awareness 101 thread:

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=004549

If you are managed properly (or at least properly enough) and you are

actively involved in decisions for treatment, I believe you will feel much

better soon.

Best wishes,

At 01:49 PM 9/24/2003, you wrote:

I was diagnosed for Graves on Fri. I am scheduled for a scan in a few

weeks. The dr. hasn't giving me any medication yet. My concern is that my

heart is always racing and it scares me. I have gained 30lbs in 1

year. My ability to exercise has gradually diminished so I think that is

why I am gaining weight? I am always tired and out of breath. I feel like

crap all the time. I was a very active outgoing person, but now I have

become the opposite of what is really me. I'm really worried about my

weight gain. Will I ever feel better and get back to my old self? -Dawn

Dawn M. Wells

September 24, 2003

Hi Dawn.

> I was diagnosed for Graves on Fri. I am scheduled for a scan in a

> few weeks.

What is your diagnosis based on? While the symptoms can obviously point

to Graves you need more than just that. Your doctor should run a Free

(not Total) T4, Free T3 would be nice too, TSH, and antibody tests. I'm

surprised that you can't get a scan sooner but then again, not being

pushed into a scan is good. This gives you time to research. The scan is

most often used as preparation for the treatment RAI - radioactive

iodine. This isn't something you want to rush into as RAI is an inferior

and complicated (despite what the drs. will say ) option. Instead of a

scan, ask your dr. for an ultrasound and insist on his doing it fast!

The dr. hasn't giving me any medication yet.

This is really surprising and doesn't reflect well on your dr. Is your

dr. an endo? Even an internist would know enough to put you on

beta-blockers if you don't immediately start on ATD's - anti thyroid

drugs. Beta-blockers will help with the racing heart and high blood

pressure which, if left unchecked are extremely dangerous, and not to

scare you, but possibly even fatal.

My concern

> is that my heart is always racing and it scares me. I have gained

> 30lbs in 1 year. My ability to exercise has gradually diminished so

> I think that is why I am gaining weight? I am always tired and out

> of breath. I feel like crap all the time. I was a very active

> outgoing person, but now I have become the opposite of what is

> really me. I'm really worried about my weight gain. Will I ever

> feel better and get back to my old self?

You will. Try to feel philosophical about the weight gain and get a few

good articles of clothes you'll feel and look good in meanwhile.

The most important things to do now - and I do mean NOW - are get a

prescription for beta blockers, get all copies of bloodwork and sign

whatever you need thanks to HIPPA to get them sent to you with each

appointment, find a good endocrinologist and nag to get seen promptly.

Here are some starting points for your research. Sources for the

infomation are the excellent links on the homepage, such as Pam's Letter

to the Newly Diagnosed, and Elaine 's articles on Suite101. Elaine,

who's a member of this group, wrote a book on Graves Disease called

Graves Disease: A Practical Guide. It might be overwhelming right now but

you'll probably be ready for it within a few weeks.

- How is Graves Disease diagnosed?

- What are the pros and cons of the treatments I will be offered? Those

treatments are RAI, surgical removal of the thyroid, and ATDs. Linked to

the homepage is an annotated list of 20+ reasons not to have RAI. RAI has

permanent ramifications for your health. Many, if not most people who

have it regret not being given time to research all their options. It

means, among other things, life-long hypothyroidism and the need for a

skilled endo to manage it.

- The role of antibodies and TSH. There may be a link on the homepage,

otherwise there are excellent articles on suite 101. If you have Graves,

the TSI is a must-have test for diagnosis. The TSH, while a useful tool,

often stays suppressed well into treatment and is all but irrelevant. So

you want an endo who values the TSI antibody test while downplaying the

value of the TSH in treatment.

I can't tell you when you'll feel back to yourself but you will feel

better once you're on beta blockers and ATDs.

Again, this is assuming you do have Graves and not another thyroid

disorder.

Take care, Fay

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September 25, 2003

Hi Fay,

Thank you for the information. I'm trying to understand the blood test-levels

etc. What is considered normal/abnormal range. The Drs assistant said that my

levels looked fine??? So why do I feel so horrible 24/7. I made another appt

with the endo for tomorrow to discuss beta blockers and result. Otherwise he

didn't plan on seeing me until the 17th of Oct (after the Scan).

Dawn

cf young wrote: