Newbie

[Guest guest]

welcome, I mostly just " listen " to everyone else give advice. I have learned

a lot too!

-Ruth

Newbie

Hi all,

Just joined this group today and have been reading, and reading, and

reading Without getting into a very long story...sick for many,

many years...thyroid problems run rampant on both sides of

family...chronic diarrhea for 10+ years...vitiligo since a

teen...extreme fatigue...fibromyalgia etc...I could go on and on.

During the summer of 2001 I was SO sick I thought that was the end

for me. I had been seeing a couple drs and they said the same

thing " It's menopause dear...just that time of your life! " If I'd

have heard that once more I would have screamed.

I found the energy to visit a clinic, 5 hours away. Felt it was my

last straw. The drs there said I was much too young (50 at that time)

to be so sick. Did a bunch of tests. Turned out I had

Graves...TSH.01, 24 hour radioiodine uptake was 45%. Because of my

age, and because I'd suffered for so many years, I wanted this over

with as fast as possible, it was suggested I have RAI, and I agreed.

I have to tell you, I felt great for about a month

afterwards...couldn't believe the difference in me, physically and

mentally. Then I started to crash. Ended up on Synthroid (.075mg

first and then .088mg) which the dr told me would happen.

Since then (last June) I haven't felt really " well " . Have absolutely

no get up and go...the things that used to interest me and that I

could hardly wait to do, or get involved in, just don't appeal to me

anymore. I force myself to walk everyday and have joined a women's

gym (Curves) that I again force myself to attend 3x weekly.

I'm really tired of feeling " blah " ...that's the only way I can

describe it. Nothing excites me anymore...my mood is just blah. I

know some people would like to be on an even keel, but this is

ridiculous. Our oldest son is getting married in July, and I can't

seem to get excited about preparations etc. Our future DIL is

wonderful...couldn't ask for a nicer wife for our son. I'm sure she

wonders why I'm not looking forward to the wedding.

Had a blood test...TSH...about a month ago. Dr(new) said it was fine.

Was too tired to actually ask what the numbers were.

Can anyone suggest what's going on with me? Thanks

Take care...Val

[Guest guest]

Hi all,

Just joined this group today and have been reading, and reading, and

reading Without getting into a very long story...sick for many,

many years...thyroid problems run rampant on both sides of

family...chronic diarrhea for 10+ years...vitiligo since a

teen...extreme fatigue...fibromyalgia etc...I could go on and on.

During the summer of 2001 I was SO sick I thought that was the end

for me. I had been seeing a couple drs and they said the same

thing " It's menopause dear...just that time of your life! " If I'd

have heard that once more I would have screamed.

I found the energy to visit a clinic, 5 hours away. Felt it was my

last straw. The drs there said I was much too young (50 at that time)

to be so sick. Did a bunch of tests. Turned out I had

Graves...TSH.01, 24 hour radioiodine uptake was 45%. Because of my

age, and because I'd suffered for so many years, I wanted this over

with as fast as possible, it was suggested I have RAI, and I agreed.

I have to tell you, I felt great for about a month

afterwards...couldn't believe the difference in me, physically and

mentally. Then I started to crash. Ended up on Synthroid (.075mg

first and then .088mg) which the dr told me would happen.

Since then (last June) I haven't felt really " well " . Have absolutely

no get up and go...the things that used to interest me and that I

could hardly wait to do, or get involved in, just don't appeal to me

anymore. I force myself to walk everyday and have joined a women's

gym (Curves) that I again force myself to attend 3x weekly.

I'm really tired of feeling " blah " ...that's the only way I can

describe it. Nothing excites me anymore...my mood is just blah. I

know some people would like to be on an even keel, but this is

ridiculous. Our oldest son is getting married in July, and I can't

seem to get excited about preparations etc. Our future DIL is

wonderful...couldn't ask for a nicer wife for our son. I'm sure she

wonders why I'm not looking forward to the wedding.

Had a blood test...TSH...about a month ago. Dr(new) said it was fine.

Was too tired to actually ask what the numbers were.

Can anyone suggest what's going on with me? Thanks

Take care...Val

[Guest guest]

Hi Val. Welcome to our group. You bet your booties we can tell you

what is wrong, because you are a classic just as many of us were

classics.

You are on T4-only meds. T4 is a storage hormone. It is supposed to

convert to the more important and active T3. Having adequate T3 in

your body is CRUCIAL to feel well, In most who are on synthetics, it

is not doing that well.

If you have read my story on the HOME page of this site, you can see

my own lousy story while on T4 only. There are also others here who

can tell you their own lousy T4-only stories. There are also others

here who are getting it, and making a switch to natural thyroid

hormones. It is THAT different.

And frankly Val, you have a lousy doc. Any doc who solely relies on

TSH is ignorant. What is MUCH more important, after your initial

diagnosis, is the level of your FREE T3, and FREE T4 possibly. You

probably have a low free T3, and that is simply WHY you feel lousy.

TSH tells you NOTHING about your free T3.

You need to consider a switch. Here, the most used natural thyroid

hormone is Armour. You have it there in Canada, but it's just

called " Thyroid " --(is that right folks??) Armour, or any regulated

natural thyroid contains T4, but it also contains T3, T2, T1 and

calcitonin--the exact same things your thyroid would be producing.

That is why it is SO effective, and why synthetic T4 is SO

uneffective.

It is certainly NOT just menopause, though the change can definitely

make your inadequately-treated thyroid WORSE. In addition to getting

correct thyroid treatment, you need to evaluate your female

hormones, including testosterone, AND consider adding DHEA.

Additionally, you might want to look at your adrenals, and see if

you need cortisol. Several of us are on natural bio-identical female

hormones, plus I am on testosterone and DHEA in the cream.

Testosterone also made a huge difference for me as did switching to

Armour.

Check out the LINKS to the left of these posts on the site. There

are two places to find Top Docs--look for those in your area, and

read the posts about them to find one that looks good. And if there

is not one in your area, considering making the drive. It is WORTH

it to have a doc who KNOWS good thyroid treatment. It is NOT worth

it to have a doc who only tests your TSH, or who puts you on

Synthroid. He is uneducated, and you will only continue to suffer

with him and with the ones who told you it was menopause. HOGWASH.

Also, Val, it is important to get a copy of all your labs, plus the

ranges, so we can further help, and so you can be your own best

advocate to find proper care.

There IS a better life out there. I KNOW what I speak here. I have

gone from the pits, to feeling as close to " normal " as I think

normal people feel.

Hope this helps. It is all important, and others will add to this,

I'm sure. We've got some good and knowledgeable people here.

Janie

[Guest guest]

Hi Val. Welcome to our group. You bet your booties we can tell you

what is wrong, because you are a classic just as many of us were

classics.

You are on T4-only meds. T4 is a storage hormone. It is supposed to

convert to the more important and active T3. Having adequate T3 in

your body is CRUCIAL to feel well, In most who are on synthetics, it

is not doing that well.

If you have read my story on the HOME page of this site, you can see

my own lousy story while on T4 only. There are also others here who

can tell you their own lousy T4-only stories. There are also others

here who are getting it, and making a switch to natural thyroid

hormones. It is THAT different.

And frankly Val, you have a lousy doc. Any doc who solely relies on

TSH is ignorant. What is MUCH more important, after your initial

diagnosis, is the level of your FREE T3, and FREE T4 possibly. You

probably have a low free T3, and that is simply WHY you feel lousy.

TSH tells you NOTHING about your free T3.

You need to consider a switch. Here, the most used natural thyroid

hormone is Armour. You have it there in Canada, but it's just

called " Thyroid " --(is that right folks??) Armour, or any regulated

natural thyroid contains T4, but it also contains T3, T2, T1 and

calcitonin--the exact same things your thyroid would be producing.

That is why it is SO effective, and why synthetic T4 is SO

uneffective.

It is certainly NOT just menopause, though the change can definitely

make your inadequately-treated thyroid WORSE. In addition to getting

correct thyroid treatment, you need to evaluate your female

hormones, including testosterone, AND consider adding DHEA.

Additionally, you might want to look at your adrenals, and see if

you need cortisol. Several of us are on natural bio-identical female

hormones, plus I am on testosterone and DHEA in the cream.

Testosterone also made a huge difference for me as did switching to

Armour.

Check out the LINKS to the left of these posts on the site. There

are two places to find Top Docs--look for those in your area, and

read the posts about them to find one that looks good. And if there

is not one in your area, considering making the drive. It is WORTH

it to have a doc who KNOWS good thyroid treatment. It is NOT worth

it to have a doc who only tests your TSH, or who puts you on

Synthroid. He is uneducated, and you will only continue to suffer

with him and with the ones who told you it was menopause. HOGWASH.

Also, Val, it is important to get a copy of all your labs, plus the

ranges, so we can further help, and so you can be your own best

advocate to find proper care.

There IS a better life out there. I KNOW what I speak here. I have

gone from the pits, to feeling as close to " normal " as I think

normal people feel.

Hope this helps. It is all important, and others will add to this,

I'm sure. We've got some good and knowledgeable people here.

Janie

[Guest guest]

They are calling your TSH " normal " but depending on the Doc that could be a

5 or 6! Have them run the Free T3 and Free T4 on you, and make sure you ask

for the numbers.

I used to belong to a board that accomodated a lot of Grave's patients.

Unfortunately, no one ever seems to be the same after they go through RAI.

Not only does it make your thyroid non-functional over a period of time, but

it doesn't stop the progression of the autoimmune disease itself. Just

because you are no longer hyper does not mean you don't still have Graves,

you do, and should be seeing an opthamologist, as now that you have had RAI

and the Grave's doesn't have your thyroid to attack anymore, it can attack

the tissues of your eyes.

Because you will eventually end up with less and less thyroid function (Rai

kills it slowly, you may not have the full effects of what it is to be hypo

for a year after!), you'll need to keep raising those meds, and have a Free

T3 and Free T4 done every other month for your first year until you are

stable. Your problem is that you are hypo, your thyroid is slowly ceasing to

function, and until you get the right levels of meds things will not

improve. And because of this, just Synthroid is not going to do it for you.

Listen to these ladies about the naturals...but you are going to have to

have your blood monitored a few times and adjust meds accordingly for the

next few months. I am sorry to be the bearer of bad news. Unfortunately, RAI

is not always the best thing, and certainly not the " fastest " . We are one of

the only countries in the world that still performs this for Grave;s

disease, if you were curious.

[Guest guest]

Hi Janie,

Thanks for the quick reply and all the great info. The dr at the

clinic that first discovered my Graves, did a Free T4 and Free T3. On

my last visit to him last June, when he increased the Synthyroid

to .088mg, I mentioned to him that I didn't feel " well " ..tired,

dragged out, blah...and wondered if it could be thyroid related. He

quickly told me that " you'll have to change your lifestyle

then...because it's not related to the thyroid " . He wouldn't even

talk about it. I've been on BP meds for about 6-7 years, and last

fall my BP started to skyrocket for no apparent reason. The family dr

I had back then, added another BP med (I was already on Ramipril and

a diuretic) and that seems to have brought my pressure down. I've

also been on Lipitor (10mg) for about a year and my cholesterol has

finally come down. Also been post menopausal for two years now, and

have started using a Natural Progesterone Cream that I get from the

States.

I've only had two appts with this new dr that I was able to find.

It's not easy to find drs in Northern Ontario. He told me that on my

next appt, in about 6 weeks, I will have a complete physical. Are

there any suggestions you can offer that will enable me to " tell " the

dr what tests I want without making him think I know more than he

does? I can't afford to get him upset with me...there aren't

anymore drs around here that are taking new patients.

Is there anyone else from Ontario on this list? If so, would you have

any drs names that I could possibly check out....and, if I did get

the names of some drs, is it possible to make my own appt. I know

lots of " specialists " require a referral from your family dr up here.

You can't just call and make an appointment. If that's the case, then

I have a feeling this new dr wouldn't refer me.

Thanks for any/all help that everyone can offer. I'm tired of being

sick and tired. I want to get my life back

Take care...Val

> Hi Val. Welcome to our group. You bet your booties we can tell you

> what is wrong, because you are a classic just as many of us were

> classics.

>

> You are on T4-only meds. T4 is a storage hormone. It is supposed to

> convert to the more important and active T3. Having adequate T3 in

> your body is CRUCIAL to feel well, In most who are on synthetics,

it

> is not doing that well.

>

> If you have read my story on the HOME page of this site, you can

see

> my own lousy story while on T4 only. There are also others here who

> can tell you their own lousy T4-only stories. There are also others

> here who are getting it, and making a switch to natural thyroid

> hormones. It is THAT different.

>

> And frankly Val, you have a lousy doc. Any doc who solely relies on

> TSH is ignorant. What is MUCH more important, after your initial

> diagnosis, is the level of your FREE T3, and FREE T4 possibly. You

> probably have a low free T3, and that is simply WHY you feel lousy.

> TSH tells you NOTHING about your free T3.

>

> You need to consider a switch. Here, the most used natural thyroid

> hormone is Armour. You have it there in Canada, but it's just

> called " Thyroid " --(is that right folks??) Armour, or any regulated

> natural thyroid contains T4, but it also contains T3, T2, T1 and

> calcitonin--the exact same things your thyroid would be producing.

> That is why it is SO effective, and why synthetic T4 is SO

> uneffective.

>

> It is certainly NOT just menopause, though the change can

definitely

> make your inadequately-treated thyroid WORSE. In addition to

getting

> correct thyroid treatment, you need to evaluate your female

> hormones, including testosterone, AND consider adding DHEA.

> Additionally, you might want to look at your adrenals, and see if

> you need cortisol. Several of us are on natural bio-identical

female

> hormones, plus I am on testosterone and DHEA in the cream.

> Testosterone also made a huge difference for me as did switching to

> Armour.

>

> Check out the LINKS to the left of these posts on the site. There

> are two places to find Top Docs--look for those in your area, and

> read the posts about them to find one that looks good. And if there

> is not one in your area, considering making the drive. It is WORTH

> it to have a doc who KNOWS good thyroid treatment. It is NOT worth

> it to have a doc who only tests your TSH, or who puts you on

> Synthroid. He is uneducated, and you will only continue to suffer

> with him and with the ones who told you it was menopause. HOGWASH.

>

> Also, Val, it is important to get a copy of all your labs, plus the

> ranges, so we can further help, and so you can be your own best

> advocate to find proper care.

>

> There IS a better life out there. I KNOW what I speak here. I have

> gone from the pits, to feeling as close to " normal " as I think

> normal people feel.

>

> Hope this helps. It is all important, and others will add to this,

> I'm sure. We've got some good and knowledgeable people here.

>

> Janie

[Guest guest]

So when were you dxed? what does dxed mean? - Yes I'm on disability, been on it about 10 years now.

[Guest guest]

Welcome aboard, Mindy. It's nice to meet you! )

Challis

~~ Seeking my dx;Daughter of a wise MSer;Mother of four (18, 14½, 5, 22 months), Mothering a fifth (nearing-19);Married to my best friend, childhood crush, greatest supporter, my everything. "The more I know the more I know I need to know"~~~~~~~~

Hello Everyone,My name is Mindy and I have MS (recently updated to spms) and have decided to join in some of the MS groups and get support or give support. It sure is a frustrating disease. My worst problem has been leg spasticity which has it's ups and downs and had to walk with a cane for a while. My bladder is also shot and have been trying to self-cath to no avail. We recently learned my bladder is small and spastic and this is why self-cath wasn't working but frustrated because none of the meds are working either. I've created a successful home party plan business and it's very frustrating to have a bladder problem when you are in front of a group!!!But I remain optimistic. I'm going to fight this damn disease with my head held high! Hope to chat with you all and make some MS friends!Mindy

[Guest guest]

Welcome Marge! )

What is FSP??

Challis

~~ Seeking my dx;Daughter of a wise MSer;Mother of four (18, 14½, 5, 22 months), Mothering a fifth (nearing-19);Married to my best friend, childhood crush, greatest supporter, my everything. "The more I know the more I know I need to know"~~~~~~~~

Hi, my name is Marge and I'm new here. I don't know if I've posted yet, as one of my problems with my disease is my memory. I have no short term memory. I can remember back as a child, but anything recent - its gone. I don't work, as I can't find anyone who wants an employee that can't remember their instructions. My disease is called FSP. It's like MS, except FSP is hereditary. Sometime I hope to find an answer to all of it. - Marge

[Guest guest]

,

What does your doctor give you for the fatigue?

Ann

Newbie

Hello to the group(I am esttgrl). I was dx with Transverse Myelitis 4/04 but everytime I see the neurologist he mentions that this can progress to MS & treats me with MS meds for severe & incapacitating fatigue (has increased as the weather in Texas gets hotter & more humid). I have the symptoms of MS & when I think back I have had various problems with numbness in my feet, legs, & arms for about 6-7 year that always went away after a month or so until last spring. I was just about paraplegic last spring but have improved & now have numbness & weakness in my arms & legs, memory problems, blurred vision at times, bladder contol problems, & problems with my balance. I walk with a cane. I had to retire from a job I loved (an RN in Public Health) & this disease course has been quite an experience, but I have tried to remain positive. It is so nice to read that there are other people with these kind of problems - my family is supportive but don't understand how bad these symptoms can be. Enough for now, I really am grateful for how much better I am than a year ago & try to focus on that.

[Guest guest]

Welcome . I'm glad you found us.

I was first diagnosed with Transverse Myelitis too. That was in October 1997. Then I was dxed with MS in June 98.

What kind of symptoms are you having now? Have you progressively gotten better since your big attack?

Hang in there!

Sharon (list owner/creator) wrote:

Hello to the group(I am esttgrl). I was dx with Transverse Myelitis 4/04 but everytime I see the neurologist he mentions that this can progress to MS & treats me with MS meds for severe & incapacitating fatigue (has increased as the weather in Texas gets hotter & more humid). I have the symptoms of MS & when I think back I have had various problems with numbness in my feet, legs, & arms for about 6-7 year that always went away after a month or so until last spring. I was just about paraplegic last spring but have improved & now have numbness & weakness in my arms & legs, memory problems, blurred vision at times, bladder contol problems, & problems with my balance. I walk with a cane. I had to retire from a job I loved (an RN in Public Health) & this disease course has

been quite an experience, but I have tried to remain positive. It is so nice to read that there are other people with these kind of problems - my family is supportive but don't understand how bad these symptoms can be. Enough for now, I really am grateful for how much better I am than a year ago & try to focus on that.

Sharon (MSersLife creator/owner)

"Happiness is not a destination. It is a method of life." -Burton Hills

Yahoo! Mail Stay connected, organized, and protected. Take the tour

[Guest guest]

Welcome aboard! )

Have you had an MRI yet??

Challis

~~Seeking my dx;Daughter of a wise MSer;Mother of four and Mothering a fifth;Married to my childhood crush, best friend, greatest supporter, partner in everything.The more I know the more I know I need to know.~~~~~~~~

Hello to the group(I am esttgrl). I was dx with Transverse Myelitis 4/04 but everytime I see the neurologist he mentions that this can progress to MS & treats me with MS meds for severe & incapacitating fatigue (has increased as the weather in Texas gets hotter & more humid). I have the symptoms of MS & when I think back I have had various problems with numbness in my feet, legs, & arms for about 6-7 year that always went away after a month or so until last spring. I was just about paraplegic last spring but have improved & now have numbness & weakness in my arms & legs, memory problems, blurred vision at times, bladder contol problems, & problems with my balance. I walk with a cane. I had to retire from a job I loved (an RN in Public Health) & this disease course has been quite an experience, but I have tried to remain positive. It is so nice to read that there are other people with these kind of problems - my family is supportive but don't understand how bad these symptoms can be. Enough for now, I really am grateful for how much better I am than a year ago & try to focus on that.

[Guest guest]

I had 2 MRI's in 4/2004 - of the head & the spine. The head was

negative, but the spine showed " lesions " at C2. I was diagnosed with

Transverse Myelitis instead of MS because no lesion on MRI of head &

my neurologist said you have to have head lesions for MS.

> Welcome aboard! )

>

> Have you had an MRI yet??

>

> Challis

> ~~

> Seeking my dx;

> Daughter of a wise MSer;

> Mother of four and Mothering a fifth;

> Married to my childhood crush, best friend, greatest supporter,

partner in

> everything.

>

> The more I know the more I know I need to know.

> ~~~~~~~~

>

> In a message dated 6/26/2005 11:54:15 AM US Mountain Standard Time,

> legli@s... writes:

> Hello to the group(I am esttgrl). I was dx with Transverse

Myelitis

> 4/04 but everytime I see the neurologist he mentions that this can

> progress to MS & treats me with MS meds for severe & incapacitating

> fatigue (has increased as the weather in Texas gets hotter & more

> humid). I have the symptoms of MS & when I think back I have had

> various problems with numbness in my feet, legs, & arms for about 6-

7

> year that always went away after a month or so until last spring.

I

> was just about paraplegic last spring but have improved & now have

> numbness & weakness in my arms & legs, memory problems, blurred

vision

> at times, bladder contol problems, & problems with my balance. I

walk

> with a cane. I had to retire from a job I loved (an RN in Public

> Health) & this disease course has been quite an experience, but I

have

> tried to remain positive. It is so nice to read that there are

other

> people with these kind of problems - my family is supportive but

don't

> understand how bad these symptoms can be. Enough for now, I really

am

> grateful for how much better I am than a year ago & try to focus on

> that.