Re: comments on my PTU dose,to Elaine

[Guest guest]

Hi Crystal,

Some doctors think hypothyroidism isn't as serious as hyperT so they aren't

as concerned about this possibility. While it can be corrected by reducing the

ATD dose, it's best to avoid becoming hypothyroid in the first place.

ATDs can rarely cause side effects such as a low white blood cell count and

liver problems. Ideally, your doctor would have run a blood count and liver

function tests for baseline levels before starting the meds. This is because the

white blood cell count can be on the low side and liver enzymes on the high

side in GD. This isn't significant but if you have these tests later after being

on the ATDs, you'd know if any abnormal results were related to the meds or

to the hyperthyroidism. Normally, liver enzymes rise modestly while on ATDs

similar to the rise that can occur with cholesterol-lowering meds, acetaminophen

and estrogens. This wouldn't be a reason to stop the meds unless levels became

very high.

If the white blood cell count drops very low, like below 2,000, a condition

of agranulocytosis can develop. This means that you might not have enough white

blood cells to fight against infection. If this happens, you could be prone

to developing throat infections, which is why you're told to be on the alert

for symptoms of sore throat.

Side effects are more likely to happen on high doses of ATDs and for this

reason, serious side effects are generally only seen during the first 4 weeks of

treatment. You should also be on the alert for symptoms of hypothyroidism,

including depression, joint pain, mental fog, constipation, etc. You might ask

your doctor when he plans to reduce your dose. Perhaps he does plan to reduce it

earlier than the usual 6-8 weeks. That's why having your labs at 4 weeks is a

good idea. Be sure your lab orders include tests for FT4 and FT3 as well as

TSH. If not, you might want to ask about this. Take care, Elaine

[Guest guest]

Crystal,

I know it is scary at first, when on a medication and dealing with this

disease. I was just diagnosed in June of this year, and from what I come to

find, the more one learns about Graves' and how to manage it, the better

(the calmer you will be, the more in control you will feel, the better your

health will be). I have learned virtually nothing from my doctors, and they

really don't take the time to even learn themselves, from what I can tell.

I know this is a negative viewpoint, but it is my perspective, and shared

by many here, it seems. This is why we must be proactive in our health care.

The good news is, this disease and its treatments are comprehensible to the

lay person, and once you have the basic information, I believe you will

feel much more grounded. You will have a foundation. Then you can do some

fine tuning, as you learn the more subtle points on how to keep yourself

feeling good while you strive toward remission, which is your goal. Even

those who don't reach remission find that they are satisfied to take a

small dose of ATD, and are glad they still have their own thyroid hormone.

Most people do well on the medication, as long as they are not being dosed

improperly. There is no quick fix for Graves', it is a problem that may go

into remission, but it is something we need to accept that will always need

to be monitored.

There is an open letter to the newly diagnosed by Pam B in the files

section of the site, 2nd to last listing:

http://groups.yahoo.com/group/graves_support/files/. It gives a lot of

information that you will be repeatedly exposed to if you hang around here.

Another great place is Mediboard.com, and it is best to start with the

Thyroid Awareness 101 thread:

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

Elaine has a book Graves' Disease: A Practical Guide, which is excellent.

There are other books like Thyroid for Dummies as well.

Some paranoia is natural right now, but try not to let it get the better of

you. At least your doctor didn't push RAI and try to get you to not take

the medication, which is what happens to many of us, including me. I was

glad that even though my endo is mediocre at best, at least he prescribed

the PTU.

As far as cutting back on the medication, it is probably best that you get

blood work done in 4 weeks and then make a decision about dosage

adjustment, unless you are feeling hypO before that time (then would be the

time to request blood work). It usually takes 6-8 weeks for excess thyroid

hormone stored in your thyroid to be used up, and you will probably want to

make at least one decrease before then. So 4 weeks should be about right.

But if you're feeling antsy, maybe you can request labs in 3 weeks. From

what I gather, the point to reduce the dose is when the FT3 and FT4 come

into or near the top of the normal range.

At 04:04 PM 10/15/2003, you wrote:

>Thank you for the welcome and for commenting on my PTU

>dose,Elaine.

>The doctor didn`t explain how the PTU would work and

>he only told me to call the office if I experienced a

>sore throat or fever. I can`t remember him even saying

>when he wanted to see me again.

>I called the office yesterday and asked for an order

>for blood tests and I guess that I can go anytime I

>like so four weeks it will be.

>Tomorrow I`m going to call again and ask if I can come

>in for an explanation of his treatment plans and then

>I`ll tell him what I would like to have happen,now that

>I know a little more about Graves.

>If I can`t get to see him, do you think that I should

>cut back a little on the PTU? I`ve been taking it for 1

>week,today.I am very afraid of becoming Hypo to the

>point of panic.Is it usual for the doctor to want this

>to happen? He didn`t offer a choice of treatments

>either so I have no idea what he has up his sleeve.

>Geez... I guess that I`m getting paranoid too.

>

>Thanks

>Crystal