Re: Re: Eager to join your group and share my story!

July 25, 2008

Re: Eager to join your group and share my story!

Dear Simona,

I'm so sorry to hear that you're having a bad day, I know you're usually so

positive and cheerful.

I don't know the answers to your medical questions, I hope Kate has some

suggestions.

I know this illness is tough, but I also know you can get better. I know that's

hard to believe on

bad days, but we are all pulling for you, we've been there, our thoughts are

with you.

Love,

AntJoan

July 25, 2008

Hi Simona

You are having a bad day. They do happen. It sounds to unmedical me as if

maybe you are quite hypo. That' s possible. The beta blockers are important

to protect your heart (they don't make you hypo or hyper). I am not familiar

enough with your T4 test to comment on it. If it were your 'free T4' test or

'FT4' then I would understand it. a bit better. But I do know that when you

feel this badly you should talk with a doctor. It's not okay to be feeling

suicidal.

You have a serious debilitating disease. You will get stabilized and you will

feel better. But it's not going to happen all that quickly. I am not speaking

facetiously when I tell you it took me 3 years of regular doctor appointments

before I was relatively stable. Now I have learned the hard way that I'm the

sort of person who reacts quickly and strongly to almost any medication.

If your TSH went down that means that your body is calling for less thyroid

hormone. That's a good thing if you are hyper. You should count your pulse and

make sure the beta blocker isn't slowing your heart down too much. That could

be why you're feeling weak. I'm just reaching into a bottle blindly here,

trying to come up with ideas. Perhaps you need to stop all herbs and vitamin

supplements until you feel a bit better then start again, one at a time, and try

to see if you can identify which one/ones are giving you such a strong reaction.

I just spent the afternoon in bed sleeping. One thing I have discovered is that

I get extremely tired sometimes and sleep is what I need most. I woke up just

now and my sleep has been very profound - sort of like 'where am I?' and 'am I

in a hospital?' sort of feeling upon awakening. I have had to get up and go out

at 6:30am the past couple of days and they were both physically demanding days.

By this afternoon I knew I just needed to sleep. And I can give myself the okay

once in a while to sleep. It's okay to sleep if that's what your body demands.

You sometimes can't fight it. But don't lose track of the fact that this

happens to me although I have been 'treated' and am on 'appropriate hormone

replacement'. The doctors merely rendered me hypothyroid. And this is the

result. I also have a rule when I feel like this which goes like this: " I can

do only one thing per day when I feel like this. I can vacuum the house or get

groceries or go to the dentist but not two of these and not all three. " I

also have to remember that I may have done my " one thing " early in the day and

then want to do something in the evening. If I'm already tired, that just

finished me off. I get so miserably tired. Of course as I get feeling stronger

(which I do, believe it or not) I sometimes am able to tackle several things in

a day. But your body needs time to recover what it's been through to date and

you will just have to be patient with it. As someone who is hypo all the time,

I can tell you it isn't all that great a way to live. I'd sooner be hyper.

But that is not going to happen. My challenge is to learn to live well as I am.

So is yours.

Although I do believe surgical intervention is preferable to radiation, if there

is any chance at all that you can keep your thyroid intact I think it is still

your best bet. It's just very difficult. I suspect your next bloodwork will

show your TSH down and you will have moved further hypo. But I could be so

wrong. If you really feel suicidal, you can go to the hospital and talk with

them. They can do a TSH test there and will look after you. You may have to

help them to understand. That's where your knowledge comes into play. You will

also have to be honest about the supplements etc you have been taking so they

get the full picture. Be prepared to explain what each one does. They may have

to look them up to understand what you are doing and how they interact.

Being at all hyper for me causes anxiety to kick in. Are you worried? Panicky?

Or just tired and miserable?

The thyroid controls so much of our every day life. Maybe you could make

yourself a list of how you feel. (I can remember writing reams and reams of

stuff and faxing it off to the endo who really didn't care. She just saw the

whole thing as further proof that I had anxiety and prescribed anti-anxiety

pills for me. But every so often when I find it and read it, I still remember

the exact feelings.) Throw any good things on your list too. These lists are

our way of expressing what's happening and they do help with the doctors...They

also help us to unerstand what is going on.

Please feel free to write again and let me know how you are doing. I'm usually

online every day.

Take care, and give yourself the gift of sleep if that is what you need the most

today.

Kate

Re: Eager to join your group and share my story!

Hi Kate,

well my post has desappeared again somewhere.

Well, I am not feeling too good today. I don't know that is going on. I

am feeling so weak again. I know I am not suppose to ask this, but why

is this happening to me. I am spending the day in bed again.

I am suppose to go get the blood test in 5 days. I am afraing that I am

going hyper again. Can you tell me how this can be that my both results

are high TSH 19 and T4 14. TSH went down, but T4 up. Am I still

considered hypo? I am consufed here, that's why I am confused with my

supplements, am I suppose to take recomendations for hypos or hypers.

My heart is still high, I am taking beta blockers. This fluctation in

hormones is just taking its toll on me. I am feeling very sad today,

and really loosing my hope that I will be able to stabilize it without

surgical intervention. On days like today honestly it seems like a

pretty good idea. I want to stay positive and believe in miracle, but

today.... I guess it's not the right day.

Simona

No virus found in this incoming message.

Checked by AVG - http://www.avg.com

Version: 8.0.138 / Virus Database: 270.5.5/1571 - Release Date: 24/07/2008 5:42

PM

July 25, 2008

I think Kate's advice to check your pulse is a good one. Taking beta

blockers made me psychotic because they lowered my pulse so much

(low 40's/minute) that it affected my sense of well-being to the

point where I thought I was going crazy. Maybe they're having a

similar effect on you without the bradycardia (low pulse). You could

ask about going off them if they're not working anyway.

I have heard of people having symptoms of both hyper and

hypothyroidism at the same time. I'm not sure doctors understand

how/why that can happen, but you could ask yours.

Keep your spirits up, dealing with thyroid problems takes a long time

because there's such a lag with changes in thyroid hormone levels.

Nissa

> Re: Eager to join your group and share my story!

>

>Dear Simona,

>

>I'm so sorry to hear that you're having a bad day, I know you're

>usually so positive and cheerful.

>

>I don't know the answers to your medical questions, I hope Kate has

>some suggestions.

>

>I know this illness is tough, but I also know you can get better. I

>know that's hard to believe on

>bad days, but we are all pulling for you, we've been there, our

>thoughts are with you.

>

>Love,

>AntJoan

>

August 25, 2008

Hi Simona

How are you feeling now? Any better yet?