Re: Good news/Bad news!!??

[Guest guest]

Hello, Prue,

My last name is Bowen, too, by the way.

The drop from 20 mg of Tapazole a day to 5 mg a day was too drastic a

drop. It is much better to reduce your medication very slowly, by

2.5 mg a week. It may be that 5 mg is not even the right dose for

you, right now. It is hard to go against the professionals, but as

you learn more about Grave's Disease, here, you will gain the

confidence needed to think about everything that is recommended to

you.

Diagnosed 8/20/02. On Block and Replace Regimen since April 11.

Taking 15 mg Methimazole; 120 mg Armour. Latest labs: On June 5,

2003 - FT3 = 3.6; FT4 = 1.3. Will continue on same regimen for three

months. I am still experiencing palpitations which I had expected to

disappear when my lab results were normal; take between 40 and 80 mg

Inderal a day. Generally, feeling okay. Slow to resume exercising -

One mile walk, five days a week and stretching exercises every day.

[Guest guest]

Hi Prue

I can't help you very much but when at the health shop the shop assistant also

takes flax oil and told me to pour it over your food. Also you can try using it

as a spread instead of butter.

The bottle I brought had these serving suggestions

Salad dressing or drizzled over baked potatoes or vegetables

Pesto, Hollandaise or homemade mayonnaise

Marinades add to cooked seafood Lemon juice and fresh herbs.

Protein drink and smoothies

Fresh herb or garlic bread dips

Apparently you can add it to hot food but you can't add heat to it if that makes

sense.

I thought of freezing as you can freeze it but so far it won't freeze the lady

also said eating fish once aweek replaced her flaxseed oil I don't know to much

about that one

I have 2 children who feel the same as you about it I am leaving it for a while

before I try again but I hope you find something you can have it with.

Take care

Regards Carole

Good news/Bad news!!??

Hi everybody,

Sorry I haven't posted in the last few weeks. I had the uptake scan

on June 9th, fortunately, the scintigram showed no problems with

nodules. The scan confirmed the diagnosis of Grave's (with diffuse

goitre). Thats's the good news, I think.

Labs taken at the same time indicate a much more normal FT4, but I

need help with interpretation please.

Labs on May 8 were: FT4: 29.5 pmol/L (Ref: 10.4 - 23.2)

TSH: <0.02 mIU/L (Ref: 0.35 - 5.50)

FT3: 16.73 pmol/L (Ref: 2.60 - 5.70)

Labs on June 9 were: FT4: 11.3 pmol/L (Ref: 10.4 - 23.2)

TSH: <0/02 mIU/l (Ref: 0.35 - 5.50)

FT3: 5.15 pmol/L (Ref: 2.60 - 5.70)

Again, I would have thought good news, seeing as I have only been

taking Carbimazole since May 23 (20mg per day in two doses).

My doctor (very supportive) reviewed these results on June 23 and on

the Nuclear Medicine Physician's recommendation, reduced the

Carbimazole to 5 mg daily Monday to Friday in a single dose.

I have reduced the dose as told, BUT on Wednesday, had two major

Grave's rage incidents, (the first for over three weeks), my sweats

have gotten much worse and more frequent, I have niggling headaches,

and the TED has gotten worse in the past ten days, despite the

flaxseed oil that I am consuming at 2 tablespoons daily (under

protest, I hate the feel and taste and don't consume juices or

yoghurt; it also tastes foul with milk, which I drink gallons of), +

2 capsules of flaxseed oil night and morning. I can't source

flaxseeds here, health food shops say they can not get them!! I also

have Liquid Tears to relieve my eyes.

To put you properly in the picture, I quit smoking one year, 26 days

and 8.5 hours ago, I quit coffee (which I used to drink 10-15 cups

per day) in April, I quit alcohol (light - moderate drinker) in

March, started drinking herbal teas, including St 's Wort and

others ad lib, and my love life has plummeted to zip!

So here I am, watching my health and diet, not doing ANYTHING to

stress me or be bad for me, being so good that Dorothy & Toto better

look out (LOL), and I feel absolutely dreadful. I am eating way too

much, but the hunger pangs won't stop, I am losing weight (5'11 " and

204 lbs, disgraceful eh?) and so sad that I feel like upping my dose

of Prozac, which until a week or so ago, was helping me cope quite

well.

Help, please!! I still feel I know so little about what is happening

and it's very scary, even with all the wonderful posts I read each

day that are so supportive to everyone.

I feel that the dose is too low, but I don't know what it should be.

My doctor is arranging a referral to a proper endo, after I told her

I would not be returning to the Nuclear idiot, so I know have to wait

to get an appointment. In the meantime, is there anything I can do to

help myself??

Many thanks for your help to date, this would be the most useful site

I have ever come across on the web. It is remarkable to see people

like Elaine and Pam and everyone using their experiences to help

everybody. I hope one day, that I am knowlegeable and stable enough

to be able to offer advice in return.

Blessing to you all

Prue Bowen

[Guest guest]

Hi Prue,

Your doctor may be very supportive but I think he's nuts. Going from 20 mg.

a day in 2 doses to 5 mg. a day only 5 days a week in one dose all at once

is a HORRIBLE thing to do! Even if your labs indicate that your levels are

coming down, such a drastic cut is simply a way to have them bounce right

back up to severe hyper. Is your doctor now going to say " ah well, the ATD's

didn't work lets radiate you " ?

You must go back and get him to renew your prescription at a higher level.

And you MUST take it in split doses, or it won't work that well. The

literature for the medication says take in split doses, not once a day and

it's right. Also you shouldn't have been dropped more than 5 mg. at a time,

unless you had moved into hypo numbers, which you haven't (although your ft4

is moving pretty low).

Personally if I were taking your meds, I'd try taking 15 mg. a day in THREE

doses, as close to 8 hours apart as I could. I'd see how I felt on that--if

I started having strong hypO symptoms I'd drop it by a bit, say 2.5 mg.

altogether (just break a crumb off each 5 mg. pill to do that). If I still

felt hypo a week later, I'd drop the dose down to 10 mg. a day--and stay at

that dose, again in three split doses, until I felt myself getting hypo

again. Then I'd drop again, to 7.5 mg. a day--half a pill three times a day.

Et cetera. The thing about the timing is that sometimes your levels are

changing fast especially when you just start out, and you need to reduce

down a bit faster than you think you ought to--but it has to be gradual, or

(at least from my experience) your body just can't deal with the change.

Elaine often says GD patients should be able to be maintained on 10 mg. a

day or less after about 6 weeks--I found a 'set point' for a long while at

12.5 mg. a day, I was taking it in 2 doses and just never seemed to improve.

Then I decided to try 3 doses, something I'd resisted since I was afraid I

would forget the middle one. I made a commitment to not forget it. And I

started getting better rather quickly. I went from 12.5 mg. to 10 to 7.5 to

5 to 2.5 very quickly, in a matter of about 1 1/2 months. *That* is very

quickly! 20 to 5 is *insanity*! When you get down to the point you can't

break the pills into 3 doses any more, you kinda have to take it in 2. I

haven't figured out a way around that yet.

Just lately I've had some major stress in my life and went back up to 2.5

mg. a day, broken into in 2 doses--I had been taking even less, maybe 2 mg.

a day, for several months. Fine-tuning the dose in small increments really

does work, from high dose to low, to help your thyroid heal. So does paying

strict attention to your symptoms and keeping track of their changes. You

have to be your own best friend to beat this disease.

Hope this helps,

Terry

>

> Reply-To: graves_support

> Date: Thu, 26 Jun 2003 01:36:05 -0000

> To: graves_support

> Subject: Good news/Bad news!!??

>

> Hi everybody,

> Sorry I haven't posted in the last few weeks. I had the uptake scan

> on June 9th, fortunately, the scintigram showed no problems with

> nodules. The scan confirmed the diagnosis of Grave's (with diffuse

> goitre). Thats's the good news, I think.

> Labs taken at the same time indicate a much more normal FT4, but I

> need help with interpretation please.

>

> Labs on May 8 were: FT4: 29.5 pmol/L (Ref: 10.4 - 23.2)

> TSH: <0.02 mIU/L (Ref: 0.35 - 5.50)

> FT3: 16.73 pmol/L (Ref: 2.60 - 5.70)

>

> Labs on June 9 were: FT4: 11.3 pmol/L (Ref: 10.4 - 23.2)

> TSH: <0/02 mIU/l (Ref: 0.35 - 5.50)

> FT3: 5.15 pmol/L (Ref: 2.60 - 5.70)

>

> Again, I would have thought good news, seeing as I have only been

> taking Carbimazole since May 23 (20mg per day in two doses).

>

> My doctor (very supportive) reviewed these results on June 23 and on

> the Nuclear Medicine Physician's recommendation, reduced the

> Carbimazole to 5 mg daily Monday to Friday in a single dose.

> I have reduced the dose as told, BUT on Wednesday, had two major

> Grave's rage incidents, (the first for over three weeks), my sweats

> have gotten much worse and more frequent, I have niggling headaches,

> and the TED has gotten worse in the past ten days, despite the

> flaxseed oil that I am consuming at 2 tablespoons daily (under

> protest, I hate the feel and taste and don't consume juices or

> yoghurt; it also tastes foul with milk, which I drink gallons of), +

> 2 capsules of flaxseed oil night and morning. I can't source

> flaxseeds here, health food shops say they can not get them!! I also

> have Liquid Tears to relieve my eyes.

> To put you properly in the picture, I quit smoking one year, 26 days

> and 8.5 hours ago, I quit coffee (which I used to drink 10-15 cups

> per day) in April, I quit alcohol (light - moderate drinker) in

> March, started drinking herbal teas, including St 's Wort and

> others ad lib, and my love life has plummeted to zip!

> So here I am, watching my health and diet, not doing ANYTHING to

> stress me or be bad for me, being so good that Dorothy & Toto better

> look out (LOL), and I feel absolutely dreadful. I am eating way too

> much, but the hunger pangs won't stop, I am losing weight (5'11 " and

> 204 lbs, disgraceful eh?) and so sad that I feel like upping my dose

> of Prozac, which until a week or so ago, was helping me cope quite

> well.

> Help, please!! I still feel I know so little about what is happening

> and it's very scary, even with all the wonderful posts I read each

> day that are so supportive to everyone.

> I feel that the dose is too low, but I don't know what it should be.

> My doctor is arranging a referral to a proper endo, after I told her

> I would not be returning to the Nuclear idiot, so I know have to wait

> to get an appointment. In the meantime, is there anything I can do to

> help myself??

> Many thanks for your help to date, this would be the most useful site

> I have ever come across on the web. It is remarkable to see people

> like Elaine and Pam and everyone using their experiences to help

> everybody. I hope one day, that I am knowlegeable and stable enough

> to be able to offer advice in return.

> Blessing to you all

>

> Prue Bowen

>

>

>

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