Help

June 26, 2006

In a message dated 6/26/2006 4:27:21 AM Eastern Daylight Time,

mailtopang@... writes:

But i guess at least one year. Of course,

if you are feeling hypo, by all means, reduce it to a

comfortable level. Having said that, I do not think

you should stop altogether after a few months on the

med.

Dear Grace,

As we all know, I did go off the meds after a few months of weaning, and am

fine. I think it is individual, as I said before. I do know that going hypo

is not good for you, although that is what the doctors want. I personally

think the more time one spends out of balance (whether hyper or hypo), the

harder

it is to get well. I have come to that conclusion by listening to everyone on

this board for the past 8 years, but, of course, that is not a scientific

study, and I'm not sure (I wish there were a study about this, so we all

wouldn't

be shooting in the dark).

I know endos like to make and keep us hypo, for whatever their reasons, and,

by not listening to my endo, I got well.

Keep listening to your body, that is my best advice.

Best,

AntJoan

June 26, 2006

Hi Grace,

You can surf on some of the previous post to learn

more. Perhaps you can search for my name to know more

about my journey. Too lazy to retype all again.

Anyway, I took PTU (similar to Carbimazole) for more

than 2 years before gradually weaning off.

Personally, I do not encourage others to wean off the

med too early. Now, how early is early, that is

debatable. But i guess at least one year. Of course,

if you are feeling hypo, by all means, reduce it to a

comfortable level. Having said that, I do not think

you should stop altogether after a few months on the

med.

After taking PTU for 2 years, i begin gradually

weaning off the med. From 3 tablets per day, to 2

tablets per day for 2-4 months and finally 1 tablet

per day for the next 3-5 months. During that period of

time, i constantly go for blood screen and I slowly

notice my TSH beginning to rise. I have stopped

altogether more than half a year ago.

Bear in mind that I have been consistently taking PTU

for a duration of 2 years. Obviously i am not asking

you to do the same. But be careful, do not do it in a

hurry and never put yourself in unnecessary pressure.

My sister too, have constipation. Counter ur

constipation naturally. Papaya is very very good for

constipation, but make sure it's ripen fully. Half

ripen papaya can lead to indigestion.

Let us know more of your condition and your progress.

Take care and God bless.

Pang

Re: help

Hi AntJoan

I have been doing well on the carbimazole and combined

it with eating healthier

and taking supplements now too as well as started on a

homeopathic course

for my thyroid too.

One thing though, you say you reduced your meds

gradually - how gradual was

that? I reduced the carbimazole from 6 tablets to four

but still feel sluggish,

am constipated and want to sleep constantly, along

with sore distended stomach

and no appetite - only eating because I know I have to

eat healthy really

and the weight is starting to go on .... and on! - a

complete contrast from

the person I was a few months ago.

Does this mean I should reduce the meds by perhaps one

more tablet? I am

nervous about doing so because of the state I was in

before the tablets but

this is making me so sluggish. Or perhaps stay with

this amount? The blood

tests showed almost normal levels although my TSH was

negligible which means

the Dr says, that I am still hyper.

Unfortunately I am not seeing anyone at the moment as

I am waiting for my

appointment with the specialist to come through. The

Doctor has said she

doesn't need to see me as that should be through quite

soon.

Thanks!

Grace

Send instant messages to your online friends http://uk.messenger.

June 26, 2006

Thanks to everyone for their input - I am listening:-) Well I feel really

sluggish again and as far as aware am doing all the right things so may reduce

by just one more tablet, will see how it goes girls!

I think the reason is that I feel like a slug - all sluggish and bloated

- whereas before I was always fit and active. It is affecting home and work.

Another reason is I need to have more energy than this as we have a

smallholding

and we are cutting hay ready to harvest and believe me it is hard work and

we don't have help so I need to feel less tired than this.

I can always up the meds again if I feel myself going hypo. It is as if

my body is getting used to whatever amount of meds I take then I have to

reduce again. Will go by listening to my body and will take it really slow

- no point in throwing myself out of whack again (yaaaawn) Gosh, so sleepy

lol.

Thanks again girls, it really is nice to know you are all there, especially

when the Dr has kind of left me to sail along just now.

Grace

___________________________________________________________

Tiscali Broadband from 14.99 with free setup!

http://www.tiscali.co.uk/products/broadband/

June 26, 2006

Hi Kim

Ah I should have read this one first. Right, I really feel I must reduce

before I fall asleep right here and now. Never knew it worked better to

miss the tablets for a few days then resume at a lower dose - will try that

then, thanks!

I do seem to be responding fast to them. Guess the TSH will take longer

to respond but that is ok, I have patience:-)

Grace

___________________________________________________________

Tiscali Broadband from 14.99 with free setup!

http://www.tiscali.co.uk/products/broadband/

June 26, 2006

Hi Pang,

Don't worry, I won't come off them too fast - i will just reduce tablet by

tablet until I feel I can live " normally " without being hyper or hypo. From

what you say does this mean that your TSH does not rise at all while on the

meds? I assumed it would rise gradually as I reduced them but it doesn't

sound like that is what happens. Hmmmm ... More learning:-)

Grace

___________________________________________________________

Tiscali Broadband from 14.99 with free setup!

http://www.tiscali.co.uk/products/broadband/

June 26, 2006

Oh, and i have never tried papaya! Must try to get hold of some:-)

___________________________________________________________

Tiscali Broadband from 14.99 with free setup!

http://www.tiscali.co.uk/products/broadband/

June 26, 2006

OOPS! Forgot to mention that in some people the TSH can stay suppressed for

longer periods. (Some people months or years.) So that is another reason not

to give too much credit to the TSH during treatment.

TSH is more valuable for diagnoses when a patient has not been having any

treatments for thyroid imbalances.

Maybe that will help understand why your TSH isn't moving yet. Give it time.

Kim

Re: help

Hi Kim

Ah I should have read this one first. Right, I really feel I must reduce

before I fall asleep right here and now. Never knew it worked better to

miss the tablets for a few days then resume at a lower dose - will try that

then, thanks!

I do seem to be responding fast to them. Guess the TSH will take longer

to respond but that is ok, I have patience:-)

Grace

__________________________________________________________

Tiscali Broadband from 14.99 with free setup!

http://www.tiscali.co.uk/products/broadband/

________________________________________________________________________

Check out AOL.com today. Breaking news, video search, pictures, email and IM.

All on demand. Always Free.

June 26, 2006

Grace,

As you reduce you may need to split a pill. That will allow you more

flexibility in reduction doses. And as you get lower you may need to reduce in

smaller increments that a full pill at a time. Just a thought.

I know one person that reduced down to a maintenance dose of 1/4 pill. But that

is what kept her stable. I think she actually bought a pill splitter to help

get it that small.

Kim

RE: Re: help

Hi Pang,

Don't worry, I won't come off them too fast - i will just reduce tablet by

tablet until I feel I can live " normally " without being hyper or hypo. From

what you say does this mean that your TSH does not rise at all while on the

meds? I assumed it would rise gradually as I reduced them but it doesn't

sound like that is what happens. Hmmmm ... More learning:-)

Grace

__________________________________________________________

Tiscali Broadband from 14.99 with free setup!

http://www.tiscali.co.uk/products/broadband/

________________________________________________________________________

Check out AOL.com today. Breaking news, video search, pictures, email and IM.

All on demand. Always Free.

June 27, 2006

Hi Kim,

Thanks for that advice - never even thought of splitting a pill (duh!) and

you are right, it would give me more flexibility as I am wary of reducing

by too much too fast.

Thanks!

Grace

___________________________________________________________

Tiscali Broadband from 14.99 with free setup!

http://www.tiscali.co.uk/products/broadband/

July 14, 2006

Rhonda,

It sounds like you stopped the antibiotics too soon. Lyme-Literate MDs will

keep you on antibiotics until 8 weeks after all symptoms have abated, with an

average length of antibiotic treatment being about 18 months. I've been on

antibiotics since October, and I figure I'm about half way there. And my case

is mild compared to many who post here.

You may also be infected with co-infections - other diseases carried by the same

ticks that carry Lyme.

Please, if you haven't already, get yourself to an LLMD - a Lyme-Literate MD.

If you send another message to the group with your location in the subject line,

hopefully someone here can recommend someone to you. Something like " LLMD

Needed near Nashua New Hampshire " You can also ask for a referral from the LDA

at http://www.lymediseaseassociation.org/, but they charge $5.00 and don't

always get back to you.

Hang in there. If you improved on the rocephin, you can get better again.

jayrho74 <jayrho74@...> wrote: I have had Lyme symptoms for nearly a dozen

years , but no doctor

said

LYME but just about everything else!!I feel that I have reached the

end....With ups and downs, I am spiralling downward... I can hardly

walk and my arms are useless.

Previously did IV Rosephin for 3 months.initially improved, but then

reversed fast. Did Samento for nearly a year.

Have been using 2 Rife machines: EMEM and DC Zapper for year and half

with minimum results.Get Herx reactions but no follow up improvement

While there has been a few improvements to some symptoms or

conditions

my overall quality of life has degenerated to living as an invalid.

I pray that somebody out there can offer encouraging words or

suggestions

Hopefully , RHONDA

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

Music Unlimited - Access over 1 million songs.Try it free.

July 17, 2006

>

> I am so sorry that you have had to put up with all the mess. I have

been in a chair for over 20 + years because of this disease. Let me

tell you this and I know just how hard it can be but you need to not

llet it get the best of you.

> When I started to quit the worse I got and it was so easy for me

not to care about any thing. You are worth the fight other wise you

would not be looking for help. is right find a good Lyme Dr.

and it may be cause of antibodic stop to soonn.. please write if you

have more question. Just what state due you live?? Bud

>

>>I live in Arizona,40 miles south of Tucson,small artists town called

TUBAC. After so many years of bad luck with Doctors , including

LLMD's , That I switched to RIFE Therapy at home.

This week is especially bad as everything seems to be falling apart. I

can hardly hold my head up. And I can't tolerate the smell of my

husbands cooking . Eating is difficult.I am also recently gone to a

wheelchair. Three years ago I was dancing up a storm, and we love

latin style particularly TANGO. Pray that I can do it again.

Antibiotix turned my teeth GREEN, and my veins started to shrink. They

wanted to put in port.

Thanks for your message and concern, Please keep in touch...I NEED

someebody out there that cares.

Rhonda

>

July 21, 2006

Dear Grace,

Good to hear from you again. I'm not sure what you should do at this

point--maybe someone else can help you. Some people on this list have more

medical

knowledge than I do. I was good at listening to my own body, and that's what I

advise everyone else to do. Maybe you could consult with a naturopath, or

some kind of holistic professional who can help guide you (God, how I wish the

endos knew what they were doing . . .)

Best,

AntJoan

July 21, 2006

Hi Kim,

How are you doing? I just had the results of my blood tests through and

my TSH has gone, in four weeks, from less than 0.01 up to 29! Pretty dramatic

huh? Also, my weight is piling on at a pound a day..... hmmmm I know I had

lost some and needed it back on, but hey! My clothes ani't going to fit soon!

So all of a sudden from the tablets making no difference to my TSH they have

kicked in and that was with the dose lowered to two tablets per day (without

Doctors knowledge - she still wanted me on full dose of six). Of course

now my doctor says she really wants me on block and replace and has prescribed

thyroxine.

I really don't want to start the thyroxine as I have been doing so well but

obviously have to get my TSH under control. So will reduce my tablet to

one a day and then half, then quarter if thats what it takes etc. I have

been taking the Acetyl Carnatine, do you think I should stop that now?

Take care,

One sleepy getting fat Grace!

___________________________________________________________

Tiscali Broadband from 14.99 with free setup!

http://www.tiscali.co.uk/products/broadband/

July 21, 2006

Hi Aunt Joan

Well my plan was not to go hypo like you did but as i was just saying to

Kim it has kinda backfired:-( I was doing fab and feeling " normal " for first

time in ages. Went slightly hypo feeling and reduced my carbimazole down

a tablet at a time from six and was down to two (against Doctors wishes)

but between last blood tests and this result (4 wks) my TSH has gone from

less than 0.01 to 29 and I feel sooo sluggish.

Putting on a pound a day yet I have no appetite. Reduced tablet to one tho

Dr still thinks I am on six (would you believe) and has prescribed me thyroxine.

Not really wanting to take the thyroxine and confuse the issue so will wean

tablets down to one then half etc and see how it goes (I can't afford a new

wardrobe and I am vain enough not to want to get any heavier now as I have

regained all the weight I lost).

With positive thinking and a bit of care I hope to bring my TSH back down

to normal range tho I have seen in some posts that it is not so easy to come

back again (blast!). Sure I can do it if I try hard enough, just struggling

to keep energy levels up at the moment.

I find it strange that the change was so sudden.

Grace

___________________________________________________________

Tiscali Broadband from 14.99 with free setup!

http://www.tiscali.co.uk/products/broadband/

July 22, 2006

Hey, sleepy getting fat Grace!

I would definitely start cutting back all the way around. Just go slow and

steady. That way you don't rebound too fast. Watch your symptoms.

I can't really tell you which to cut down and at what rate to decrease. I think

you have to listen to your own body for that. IMO - With the thyroxine it

depends on how you are feeling. Sometimes when we are hyperT for so long, then

go hypo, it actually feels really good. Probably because we aren't binging off

the walls and are enjoying the slow down. LOL! But its not a good idea to stay

there. The longer you are hypoT the harder it will be to get back up out of it.

And the worse the hypo symptoms will get.

I have found that when I completely weaned off the Carnitine in June that my

muscle aches and weakness started to return. I think I made it to around the

two or three week mark. Then I caved. I am now back at 250mg two times a day.

This is what seems to keep my muscles feeling well enough to function without

pain. (I am beginning to believe I have fibromyaglia. Unconfirmed of course.)

So instead I had to reverse some of the dietary changes I made. I was also

taking additional magnesium to balance out my calcium intake. I have now

eliminated the magnesium and continuing to what my calcium intake. For now this

seems to be working.

It seems I was doing " everything " (without meds) that I could find to reduce my

thyroid levels. Now I have to do the reverse from being too far on the low side

for me. Its kind of a guessing game for me to find which to eliminate and which

to keep. But I am starting to feel a bit human again.

I am trying to find that happy medium. I think its one of those things that

will constantly shift for a while till I get settled in at a good spot in the

lab levels. (That's the plan anyway!)

How fast you change things IMO depends on how strong your " hypo " symptoms are.

How sleepy are you? Can you function daily, or are you now a walking zombi?

And how much weight have you gained? How about brain fog? Mine got really bad.

What I did was cut back faster if my symptoms where drastically sliding down

hill towards hypo. But go slower when I was feeling better. Watching my

symptoms. Especially looking out for the symptoms I had when I was hyperT.

Then watching labs to monitor my progress.

One suggestion though. Try to change only one thing at a time. Watch it for a

few days or weeks to see how that change effects you. Then change something

else. If you change too many things at once you won't know what is causing

what.

Ok, suddenly I have lost myself. LOL! Its like brain fog on coffee. And I

don't even drink coffee. And its bedtime - Can ya tell? Anyway, I hope my

ramblings made sense.

Take care,

Kim

Re: Re: help