Graves' and emotional stuff--Carolyn

[Guest guest]

Hi Carolyn,

First I wanted to add my 2 cents and say I'm glad you're not considering a

second RAI 5 weeks after the first. It takes the thyroid a long time to die,

often years. And right now your TSH is meaningless, which means instead that

your levels could actually be hypo and you'd need to start replacement hormone.

Testing Free T4 and Free T3 will indicate that. Or as Deb described, you may be

flip-flopping from hyper to hypo and back. I'm glad you'll be seeing another dr.

Do insist on the proper tests and being notified about them. Also do check about

the beta blocker (my dr. old me to stop--gradually!--if my heartrate went under

60).

I mainly wanted to urge you to try to communicate with your husband now that you

know what was going on. This is really part of the " in sickness and in health "

stuff, just as a diabetic might be confused and groggy with the wrong insulin

levels. (There are useful articles by Elaine at her Graves' disease site

at www.Suite101.com, which I used to educate the psychologist I'm seeing.) My

boyfriend still alternates between understanding that I'm easily " flipped out "

and calling me a b--, so I can't say there's hope for every relationship, but

it might bring some healing.

Graves' has forced me to take better care of myself--there are many aspects to

nurture, from rebuilding your body with good nutrition and lots of protein to

relaxing and getting enough rest. I ignored all this stuff as long as I could

but now there's really no choice--and after all, many of us take great care of

others, so why not ourselves too.

Best wishes

B.

[Guest guest]

Hi Carolyn,

I would also like to add to what has said from personal

experience. I had my RAI in April as I said. I believe it was about

six weeks after that they tested me and I was still hyper. They

waited again, about another 2 or 3 I would say, still hyper, so they

were trying to push me into another treatment. I refused, and that

was not knowing anything at all about Graves disease, other than what

my levels were supposed to be. Well, it's a good thing I refused

because by the beginning of July my TSH was 416.99 (imagine getting

that call from your doctor who is panic stricken and thinking the

test had to be wrong because i was still alive) He thought they wrote

the numbers wrong and i was 41.6 Anyway, I don't think that happens

to a lot of people, but what I want to say is be patient, but pay

attention to how you feel and ask for the bloodwork if you feel that

something has changed. In my case, I don't believe that my level

just " jumped to that " in one day, I think they waited too long to

check me again and weren't concerned because they were convinced that

i needed another treatment.

I would also like to comment on the beta blocker; if that is what

that drug is. I can't remember the name. This is from my

experience. It is very important that you do not stop taking it

suddenly...you have to be weaned off of them. I had a very bad

experience but found out later it could have been worse. I was put

on Inderal in the beginning, but after a few weeks or so I noticed a

rash on my body every time I took it. Well, one night I ended up in

the ER because I was having trouble breathing. The intern noticed

the rash and asked if I had taken anything. The only thing I took was

the Inderal. He told me to stop it immediately or next time the

reaction could be worse. Well, he was a doctor so I listened. The

next morning I was doubled over with unbelievable chest pain.

Fortunately I was okay, but found out later that I could have had a

heart attack because that was stopped abruptly. I was then put on

another one, and one time when I got into hypo, my heart rate dropped

to 48, I couldn't even stand up. My doctor was called and he told me

what to do to get it back up. But he said now was the time to

start " weaning " as 's doctor told her. Now, he was very careful

with me because of what happened with the Inderal, but my weaning

took several weeks..going from a full tablet every day to every other

day, for a week or so, to splitting that in half, then again till i

was taking only 1/4 and finally stopped. I don't know if that is the

process for everyone else so you need your doctor's advice. I don't

mean to scare you, and I hope I haven't, but I want you to realize

the importance of not stopping these abruptly. But equally important

is to start getting off of them if your heart rate is not staying up

in the 70's...that is where my doctor told me I needed to stay. Take

care. Deb

>

> Hi Carolyn,

>

> First I wanted to add my 2 cents and say I'm glad you're not

considering a second RAI 5 weeks after the first. It takes the

thyroid a long time to die, often years. And right now your TSH is

meaningless, which means instead that your levels could actually be

hypo and you'd need to start replacement hormone. Testing Free T4 and

Free T3 will indicate that. Or as Deb described, you may be flip-

flopping from hyper to hypo and back. I'm glad you'll be seeing

another dr. Do insist on the proper tests and being notified about

them. Also do check about the beta blocker (my dr. old me to stop--

gradually!--if my heartrate went under 60).

>

> I mainly wanted to urge you to try to communicate with your husband

now that you know what was going on. This is really part of the " in

sickness and in health " stuff, just as a diabetic might be confused

and groggy with the wrong insulin levels. (There are useful articles

by Elaine at her Graves' disease site at www.Suite101.com,

which I used to educate the psychologist I'm seeing.) My boyfriend

still alternates between understanding that I'm easily " flipped out "

and calling me a b--, so I can't say there's hope for every

relationship, but it might bring some healing.

>

> Graves' has forced me to take better care of myself--there are many

aspects to nurture, from rebuilding your body with good nutrition and

lots of protein to relaxing and getting enough rest. I ignored all

this stuff as long as I could but now there's really no choice--and

after all, many of us take great care of others, so why not ourselves

too.

>

> Best wishes

> B.

>

>