Re: Newbie Spouse

August 23, 2003

Hi ,

The group can be a bit quiet on the weekend, you'll probably get more

responses soon. It would be helpful if you could share your husbands' blood

test results here, so we can see whether he's being properly treated, and

let us know what meds he's on too. It certainly doesn't sound like he is

getting the help he needs. He is likely severely hypOthyroid, at this point.

As the thyroid dies after RAI it releases lots of stored hormone, when that

is depleted it can't produce more, and your husband should be started on

thyroid supplements, rather than anti-thyroid drugs at that point. Many of

the symptoms you describe, from the rapid weight gain to the joint pain to

the moodiness are symptoms of hypo. If his thyroid isn't helped along with a

supplement (generally Synthroid) he will get sicker and sicker, and you will

both feel completely helpless. The end of that downward spiral can be coma

and death, and believe me, we've had some guys (it seems to be the men who

get the worst end of the stick, maybe because they don't question/complain

as much as we girls?) who've come close to that eventuality before getting

help.

I'm one of the lucky people who didn't submit to RAI, so my experience with

it is limited to what I read here. Unfortunately, all that I read makes me

furious, as doctors think they can just kill the thyroid, which controls the

body's metabolism, and then the patient can go on their merry way with no

future problems. Well, the future problems are real, you and your husband

are NOT imagining any of this, and you need to take a pro-active stance to

help him because as he gets more and more hypo, he will become less and less

capable of rational thought and action on his own. " Brain Fog " is a good

description of the milder manifestations of this; psychosis can also be a

result.

Your husband is lucky he has you here to help him. And you have all of us.

Give us all the information you can, and we'll help all we can. You can also

check out Thyroid 101 on Mediboard. You definitely need to educate yourself.

Thyroid for Dummies is one book I haven't read that has recently been

recommended here; Elaine 's book Graves Disease, a Practical Guide is

another good one. Elaine also will answer questions here.

There are lots of people in your husband's situation here. You WILL get the

help you need.

Terry

>

> Reply-To: graves_support

> Date: Sat, 23 Aug 2003 22:02:09 -0000

> To: graves_support

> Subject: Newbie Spouse

>

> Hello All,

>

> Thanks for letting me join.

>

> My husband was diagnosed with GD in late April, by early June he had

> RAI. The endo we are seeing told us he had a very extreme case and we

> weren't given any other options to treat GD. He did get better, he

> felt a lot better and gained a few of the pounds (45) he had lost

> back. They had him on an anti thyroid medication which they just took

> him off of and a beta-blocker. All seemed well.

>

> About a month ago he started getting very moody, and it even got to

> the point where he was like " just let someone get in my face " I was

> seriously worried that he was going to go postal. So back to the endo

> we went, they put him on what I like to call happy pills, during this

> time my husband decided that he should try jogging to burn off some

> of his excess energy and because he was worried about gaining weight

> (he had put on a few more pounds) when his knees started bothering

> him. We when to see the endo and he took him off the anti thyroid

> medication and we are waiting to go back for more blood tests to

> check his levels and see if he has gone hypo (my guess is yes) The

> endo treated to knee pain with pain killers. They are not working

> very well. He has also gained nine pounds this week.

>

> I guess I'm really just venting and frustrated. I wish we had known

> we had other options besides RAI. I hate how moody he had become, and

> I don't know how to help him. This is a man that never got sick,

> never missed a day of work. I know he is scared, so am I. We were

> high school sweethearts; we have been married for 15 years. I have

> known him since he was 16.

>

> I'm scared because I feel like I am losing him a little everyday.

>

> I'm scared because my counter is fast becoming a pharmacy.

>

> I'm scared because he is in real pain and I don't know how to help

> him.

>

> I'm scared because I love him.

>

> I guess I'm hoping to hear or get advice from some people that have

> survived GD and from there spouses.

>

> Thanks a lot for letting me vent,

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

> ------------------------------------------------------------------------------

> --------

>

August 23, 2003

Hi ,

I am sorry to hear that you and your husband are going through such a rough

time. I know it is scary. I know you wish this wasn't happening. But things

can, and in all likelihood will, get better. You can help your husband, and

hopefully he will help himself as well. There is a lot to learn, but you

will be able to " get it, " so try to be patient with yourself, but keep

striving. With this disease, I think we all have come to find that if we

are to feel our best, we must be proactive in our health care.

One place on the Web to learn about hypOT is Shomon's site on About.com:

http://thyroid.about.com/index.htm?terms=hypothyroid

I know that you may not know whether he is hyperT or hypOT right now (most

likely he will be hypOT eventually, as that is the typical outcome of RAI),

so you can post us his labs, along with the meds and dosage that he is on

now, and the dates of the labs and med/dosage changes. I strongly recommend

the Graves' Discussion Board at www.mediboard.com for similar

info/suggestions/support.

Stress management is very important; from what I understand, stress

exacerbates the condition by increasing antibody production. If he is

hyperT, then ask him to please stop jogging or doing any exercise that can

tax his heart (gentle stretching and strolling are acceptable). He doesn't

want to damage his heart, right? Better to eat less. I know most men are

loathe to restrict their food intake, so all you can do is offer

suggestions -- not worth fighting about. The weight gain, while unpleasant,

is not as critical as both of you learning all you can about what

treatments and other lifestyle measures can help him to get stabilized.

We can better make more specific suggestions if we know the labs and his

meds. The essential tests to assess thyroid function are Free T3, Free T4,

and TSH (TSH lags, so the FT3 and FT4 are the most accurate tests for

reflecting current levels; not Total T4 or T3 uptake, as these are outdated

and less useful). It would be good if you could post any antibody tests

that he may have had, as well as any other test results for whatever he has

had done already. You should start a notebook and obtain copies of all lab

results that he gets from now on, and make notes of how he feels the days

he gets his blood work -- then attach that note to your copy of the lab

report. This will help you to find his " set point " (the point at which he

feels best), as everyone is an individual, and just being within normal

limits may not mean that his thyroid levels are optimal for him.

With patience, diligence and persistence, I do believe you will have your

sweetheart back.

At 06:02 PM 8/23/2003, you wrote:

>Hello All,

>

>Thanks for letting me join.

>

>My husband was diagnosed with GD in late April, by early June he had

>RAI.

August 23, 2003

Thanks for your response,

is on;

Atenolo 50mg a day

Propylthiouracil 50.mg 2 tablets three times a day (this is the one

they just took him off of)

Lorazepam 1mg one to two tablets a day as needed (his happy pills)

Skelaxin 400mg 2 tablets at night (muscle pain and spasms)

Vicodin tablets, one table three times a day (for his knee pain)

Plus if you can believe he was also told to take Tylenol for

Arthritis.

I'm sorry to say I don't know his levels but I will on Monday, so I

will have to get back to you then about that. We just got two books

Living Well With Hypothyroid and Living Well With Autoimmune Disease,

Both by J Shomon. Everything has been happening so fast that we

are just now really finding out GD and everything that goes with it.

BTW is 36 years old.

has not had any real eye problems, but when I asked him last

night about his eye he told me that they felt tired and burned a

little and that for example reading a TV menu, only 12 feet way

was " sort of blurry " from time to time. So I will be setting up an

eye appointment this week as well.

There is a conference in Houston sponsored NGDF in October that I

think we are going to try and go to, to learn more about GD and

possibly find a referral to a endo that specialize in diseases of the

thyroid.

I am also concerned about his diet; I know I need to look at Iodine

levels but what about carbs?

Thanks in advance for any help or advice anyone can give.

> Hi ,

>

> The group can be a bit quiet on the weekend, you'll probably get

more

> responses soon. It would be helpful if you could share your

husbands' blood

> test results here, so we can see whether he's being properly

treated, and

> let us know what meds he's on too. It certainly doesn't sound like

he is

> getting the help he needs. He is likely severely hypOthyroid, at

this point.

> As the thyroid dies after RAI it releases lots of stored hormone,

when that

> is depleted it can't produce more, and your husband should be

started on

> thyroid supplements, rather than anti-thyroid drugs at that point.

Many of

> the symptoms you describe, from the rapid weight gain to the joint

pain to

> the moodiness are symptoms of hypo. If his thyroid isn't helped

along with a

> supplement (generally Synthroid) he will get sicker and sicker, and

you will

> both feel completely helpless. The end of that downward spiral can

be coma

> and death, and believe me, we've had some guys (it seems to be the

men who

> get the worst end of the stick, maybe because they don't

question/complain

> as much as we girls?) who've come close to that eventuality before

getting

> help.

>

> I'm one of the lucky people who didn't submit to RAI, so my

experience with

> it is limited to what I read here. Unfortunately, all that I read

makes me

> furious, as doctors think they can just kill the thyroid, which

controls the

> body's metabolism, and then the patient can go on their merry way

with no

> future problems. Well, the future problems are real, you and your

husband

> are NOT imagining any of this, and you need to take a pro-active

stance to

> help him because as he gets more and more hypo, he will become less

and less

> capable of rational thought and action on his own. " Brain Fog " is a

good

> description of the milder manifestations of this; psychosis can

also be a

> result.

>

> Your husband is lucky he has you here to help him. And you have all

of us.

> Give us all the information you can, and we'll help all we can. You

can also

> check out Thyroid 101 on Mediboard. You definitely need to educate

yourself.

> Thyroid for Dummies is one book I haven't read that has recently

been

> recommended here; Elaine 's book Graves Disease, a Practical

Guide is

> another good one. Elaine also will answer questions here.

>

> There are lots of people in your husband's situation here. You WILL

get the

> help you need.

>

> Terry

>

> > From: " " <karcher@h...>

> > Reply-To: graves_support

> > Date: Sat, 23 Aug 2003 22:02:09 -0000

> > To: graves_support

> > Subject: Newbie Spouse

> >

> > Hello All,

> >

> > Thanks for letting me join.

> >

> > My husband was diagnosed with GD in late April, by early June he

had

> > RAI. The endo we are seeing told us he had a very extreme case

and we

> > weren't given any other options to treat GD. He did get better, he

> > felt a lot better and gained a few of the pounds (45) he had lost

> > back. They had him on an anti thyroid medication which they just

took

> > him off of and a beta-blocker. All seemed well.

> >

> > About a month ago he started getting very moody, and it even got

to

> > the point where he was like " just let someone get in my face " I

was

> > seriously worried that he was going to go postal. So back to the

endo

> > we went, they put him on what I like to call happy pills, during

this

> > time my husband decided that he should try jogging to burn off

some

> > of his excess energy and because he was worried about gaining

weight

> > (he had put on a few more pounds) when his knees started bothering

> > him. We when to see the endo and he took him off the anti thyroid

> > medication and we are waiting to go back for more blood tests to

> > check his levels and see if he has gone hypo (my guess is yes) The

> > endo treated to knee pain with pain killers. They are not working

> > very well. He has also gained nine pounds this week.

> >

> > I guess I'm really just venting and frustrated. I wish we had

known

> > we had other options besides RAI. I hate how moody he had become,

and

> > I don't know how to help him. This is a man that never got sick,

> > never missed a day of work. I know he is scared, so am I. We were

> > high school sweethearts; we have been married for 15 years. I have

> > known him since he was 16.

> >

> > I'm scared because I feel like I am losing him a little everyday.

> >

> > I'm scared because my counter is fast becoming a pharmacy.

> >

> > I'm scared because he is in real pain and I don't know how to help

> > him.

> >

> > I'm scared because I love him.

> >

> > I guess I'm hoping to hear or get advice from some people that

have

> > survived GD and from there spouses.

> >

> > Thanks a lot for letting me vent,

> >

> > -------------------------------------

> > The Graves' list is intended for informational purposes only and

is not

> > intended to replace expert medical care.

> > Please consult your doctor before changing or trying new

treatments.

> > ----------------------------------------

> > DISCLAIMER

> >

> > Advertisments placed on this yahoo groups list do not have the

endorsement of

> > the listowner. I have no input as to what ads are attached to

emails.

> > ------------------------------------------------------------------

------------

> > --------

> >

August 23, 2003

Yes, that is a lot of medication. Before I'd feel comfortable commenting, I

would want to see his lab results. Hopefully they did the FT3 and FT4.

Please let us know the date he had RAI, as well as for any tests, when you

post.

They should also do a liver panel, as the PTU and tylenol (and probably the

other meds) can be hard on the liver. Did he have arthritis before? Or is

it just pain related to the thyroid problem?

I know you are probably loathe to add to his meds, but I've heard that

prednisone is often administered post-RAI to help reduce the chances of

thyroid eye disease (TED, or Graves' Ophthalmology aka GO). Those symptoms

you mentioned are consistent with TED, and RAI causes antibodies to

increase, at least temporarily, resulting in increased risk of TED. If I

had RAI done, I would ask for the pred.

At 07:53 PM 8/23/2003, you wrote:

>Thanks for your response,

>

> is on;

August 23, 2003

My moodiness is something these guys I live with would love for me to get a grip

on. I have been doing fairly well till recently. Suddenly I think there is an

ogre living inside me and it comes out at the most inopportune times. Just ask

my hubby and son. lol. I normally take paxil for my PMS, and I have it the

week before and the week of my period. I'm not on it anymore because I was

having bladder problems, and am on another pill which helps with it, and is also

used for depression (didn't want to take one medication that shouldn't be taken

with another). I can see how much my attitude and personality have changed too,

since the paxil is not being taken. I'm going to talk to my Dr about it when I

see him in Sept, if I do not pinch my oldest married son's head off in the

meantime. lol. Today he is in the hotseat. I'm not sure that his situation

will ever make me happy so i'm just staying out of his path and praying he stays

out of mine.

I do find that sometimes my temper does get the best of me. I hate having to

deal with not feeling like i used to. I hate having to take pills. Sometimes I

just hate having to get up in the morning. So I'm trying to remember that

everybody around me doesn't have the same health issues I have, and occupy my

mind with reading or doing something I enjoy doing. There are times when it's

hard for me to not lash out. Like today when I received our biggest lightbill

for 437.00. I about blew a gasket. It's mostly because my hubby has been

leaving a window unit in our den running all night after he gets off his

computer. The rest of the house is central a/c but it's also been very hot

here. ughhh. I've never had such a shock as what I had when I opened that

bill. I came storming in the house tossing out orders to NOT leave that window

unit running when he's not in there. lol. You can imagine the look on his face.

He just ignores me so for that I'm fortunate. When I first got sick, I invited

him to get OUT of MY house and meant every word of it. I'm shocked he stayed to

be real honest. I am not one of those people who does well when I'm sick. We'd

also never had a fight till i got as sick as I did. That night I said MANY

things that I'm sure he's not forgot. :-( Normally, I'll go out of my way to

not hurt anybody's feelings, but I'm not like that anymore. My hubby and son's

realize it too. They'll tell you I've done a 180 degree turn and it's not

necessarily for the better. I'd love to find a quick fix, but I'm not sure

there is one for my nasty behavior sometimes.

Sandy~Houston

Newbie Spouse

Hello All,

Thanks for letting me join.

My husband was diagnosed with GD in late April, by early June he had

RAI. The endo we are seeing told us he had a very extreme case and we

weren't given any other options to treat GD. He did get better, he

felt a lot better and gained a few of the pounds (45) he had lost

back. They had him on an anti thyroid medication which they just took

him off of and a beta-blocker. All seemed well.

About a month ago he started getting very moody, and it even got to

the point where he was like " just let someone get in my face " I was

seriously worried that he was going to go postal. So back to the endo

we went, they put him on what I like to call happy pills, during this

time my husband decided that he should try jogging to burn off some

of his excess energy and because he was worried about gaining weight

(he had put on a few more pounds) when his knees started bothering

him. We when to see the endo and he took him off the anti thyroid

medication and we are waiting to go back for more blood tests to

check his levels and see if he has gone hypo (my guess is yes) The

endo treated to knee pain with pain killers. They are not working

very well. He has also gained nine pounds this week.

I guess I'm really just venting and frustrated. I wish we had known

we had other options besides RAI. I hate how moody he had become, and

I don't know how to help him. This is a man that never got sick,

never missed a day of work. I know he is scared, so am I. We were

high school sweethearts; we have been married for 15 years. I have

known him since he was 16.

I'm scared because I feel like I am losing him a little everyday.

I'm scared because my counter is fast becoming a pharmacy.

I'm scared because he is in real pain and I don't know how to help

him.

I'm scared because I love him.

I guess I'm hoping to hear or get advice from some people that have

survived GD and from there spouses.

Thanks a lot for letting me vent,

August 23, 2003

Hi , others will join in soon with more info, the best that I can give

you is, this takes a while to get better, several years to reach a better

point of wellness. I feel it's too early for your husband to start jogging

to lose weight, his body has so much to heal yet, and the jogging must of

caused the knee pain, which needs the pain killers, which is another thing

his immune system has to deal with now. Learn to slow down and let your

mind and body heal. See the Endo every six weeks for blood tests whether

the endo says or not, but realize it does take about 6 weeks for new meds to

make a change in your body. Learn to say " no " to other people that make

demands on your life, stay away from people that stress you out. Don't wig

out about gaining a few pounds, but learn to eat healthy, stay away from

packaged, processed foods.

I had RAI April 01, didn't start feeling better till FEB 03. It is a

roller coaster ride at first.

Your not losing your husband, you will get him back, but he needs you

there. I can't believe what my husband did for me these last two years,

it's hard to believe what I couldn't do for myself. He did the house work,

grocery shopping, most of the cooking, gave me back rubs and loved me. This

summer I have enjoyed mowing the lawn. I have two teenage (older than that

now) boys and a husband, but I'm mowing the lawn because I can. This

weekend, I cleaned 3 bathrooms, vacuumed the house, washed the floors, did

the laundry, and enjoyed every minute because I can. But for the last two

years I couldn't, and I didn't let it bother me. I do love to sing and do

so in several groups during the year, I didn't stop doing that because I

found that therapeutic. I couldn't do it as well as before (I noticed the

difference, others said they couldn't), but sing I still did. Don't let

your entire life disappear, but back off on what you can. ( I did still work

full time, but at first, looking back, I should of taken a disability leave

of absence, I was as sick as your husband sounds)

My husband is my highschool sweetheart also. We celebrated our 25th

wedding anniversary this summer. Hang in there.

Hope I said something helpful, others will have more medical information to

share.

Jen M