Re: Re: dosage of ATD - kitkat4184

[Guest guest]

Hi

Your last email was an IMMENSE help. I can now understand how to use the ATD's

and what to watch for.

Short History: My problem began at end of 1998. I was borderline hyper T4

(i.e. 19 in a range of 10-20). On a minute dose of 5mg a day my Ts dropped

really low. I was put on half that amount fora 2 weeks. Then a quarter every

second day. I thought I was in remission a year later. HOWEVER! NOBODY CHECKED

MY TSI ANTIBODIES. stayed in remission for 1 year. Back to hyper again T4

score 45 (range 10-20). Started on 30mg for 2 weeks only, then 15mg for 2 weeks

and down to 5mg and 1/4 every second day for a year. All the meds came quick

and fast! Appeared in remission. BUT YET AGAIN! NOBODY CHECKED MY

ANTIBODIES. So now it has come back again. This time T4 schore was 35.

Started on 30mg for 2 weeks, T4 went up to 37, panic! Put on 45mg for 17 days.

Felt gross. But trusted my new endo that he knew what he was doing. My WBC

dropped below normal - he panicked. Took me off everything. I organized for

him to talk to my old endo to find out some history about me. I discovered

that my WBC was even lower in the past and that nobody alerted me.

I, like, many in this support group didnt know better at the time and thought

the endos knew what they were doing. So, right now I feel that I am beginning

again, but by the good grace of this support group I am equipped to take my own

health into my control. I have really been bummed around.

I have now dropped from 45 mg to 20mg. And I will watch my hypo symptoms

appear. Many thanks. You're a gem!

Acupuncture: Talked to my acupuncturist. Asked her why you were getting 21

needles and I only 10. She said that it was the Japanese style of acupuncture.

She also said that they didnt put needles into the thyroid only in the legs.

Today I had 14 needles - the most I have ever had. Most of them were in the

lower leg, ankle and foot (on top). I then had one in the thyroid, below the

thyroid and just above my belly buttom, 1 in each hand between the thumb and the

next finger. This treatment is for the thyroid and the immune system to bump up

my white cell count.

Herbs: I would love to know what you have taken in the past, but only if that

is possible. I plan to go the herb path in the near future when my thyroid meds

are minimal.

Fish: Do you eat any sort of fish? which ones?

Thank you again for painstakingly describing how to deal with the ATDs. Finally

the penny has dropped in my head on how to do it!

Cheers

Liz

=============================

on

liz.jameson@...

Re: dosage of ATDs---Liz

Hi Liz,

I am fairly confident now, but only after 20 months of trial and the

occasional error. Yes, I my mercazole dosages were lowered very slowly

but the initial time frame here in Japan for treating GD, aiming for

remission, seems to be 18-24 months. Yes, I have been very lucky with

my doctor. He is a doctor of internal medicine, not even an endo but

has several GD patients and he consults with an endo colleague when

things get tricky. He prefers slow reductions with confirmation from

the patient at each step as to what are the current symptoms and

monthly labs while there is a lot of movement in the numbers. I am now

on labs every two months with the next one coming up on Tuesday.

I started out at 45mgs a day, taking 3 x 5 mg pills 3 times a day. All

my original symptoms were physical, loss of weight, tremors in the

hands, sensitivity to heat, loss of muscle strength in the thighs etc.

All these disappeared after 6 weeks at 45mgs. I went wildly hypo with a

TSH of over 40 just after that because I went on a six week trip

overseas with no labs or monitoring and still on 45mgs. As soon as the

doctor saw the numbers when I got back he reduced the dosage to 30mgs

and then to 20mgs two weeks later. Those were the two biggest dosage

reductions I have had. All others have been 5mg reductions at a time.

For me I found that the effectiveness of the mercazole had a cycle at

any one dosage level. By that I mean let's say you start on 45mgs a day

presumably because you have very hyper symptoms and numbers. After a

few weeks the symptoms go away and you feel better than you have in a

long time, not perfect but certainly better. Then as your thyroid

hormone levels drop that dosage becomes too much for you and starts to

send you hypo. You get tired, brain fog, hair starts to fall out etc.

Time for a lowering of dosage. Drop the mercazole to say 20 or 30mgs

and once again after a week or so (maybe longer, everyone is different)

you should see the hypo symptoms go away, you feel better and then you

start to see the beginning of hypo symptoms again and so it is time to

lower again.For me this cycle repeats itself and I can now tell the

first signs of heading into hypo. These signs are not the same for

everyone. You soon get to know how you are feeling. Keeping a record

of all this and your numbers at that time is so important so you can

learn. You really have to participate in your treatment.If your endo is

willing to listen to you and to take into consideration what you have

said when dosages are adjusted you should take advantage of that and be

involved in your treatment.

You seem to have been really jerked around with doses all over the

place. I am trying to remember, did you say you have had GD for five

years or so? If that is the case what kind of medication did they have

you on for the past five years (forgive me if you have already posted

all this information) until this recent dosage of 45mgs that the endo

is now saying should be dropped to 15mgs? If you are feeling very

" drugged " I would try 20mg for a week or so and then reduce to 15mgs.

you have to give each dosage time to work. When you say you feel best

on 1/4 a day do you mean 1.25mgs a day? When did you feel that way?

As for the TCM herbs well I was treated by a doctor in Shanghai and he

prescribed an initial mixture of about 15 different things. If I had

been living in China (I was in Japan then) I am sure they would have

been given to me in root and leaf form for me to boil up and drink

three times a day as Terry used to do. However as I travel a lot and

cannot imagine trying to get dried roots and leaves through various

Customs at airports I emailed my prescription and had all mine blended

and ground up into a powder by a company in Luxembourg that specialises

in that and I took two tablespoons of that three times a day in warm

water.The blend of herbs was changed several times during the nine

months I took it. I have a list of all those herbs somewhere in my GD

file and I would be happy to send it to you privately if you want to

see what I was given but as Terry has already pointed out unlike ATDS

there is no fixed formula it varies from patient to patient and from

doctor to doctor.

I have had acupuncture twice a week for the past three weeks and

usually he uses 20-21 needles. Before I started my neck was very rigid

and I felt as though my glands were swollen but that has all gone and I

also had a small curve at the top of my spine (where the thyroid point

is I am told) and that is starting to disappear. I will be very

interested to see what my numbers are next Tuesday so I can tell if

this is having any effect.

[Guest guest]

I am very relieved to find out that i am not alone at battling this

disease......

In March 2003 was i was diagnosed with Graves Disease. My enodcrinoligist had

put me on PTU right away at 200mg /3x a day...and also on Atenonol at 50mg/1x

a day...to ease the tremors and lower my heart rate....My blood pressure was

rangin between 160/89 to 190/70...and my heart rate was at a whoopin 92....

I have appointments since then with her at the end of every month...a week

before i go for the blood work...to test my levels.....

As of June she could not get a reading of my T3's or T4's....commented that t

hey were off the charts....She increased my dose to 300mg/3x a day.....of the

PTU..I developed heart palpitations and the tremors were still bad and she

increased the Atenonol to 100mg from 50mg....once a day...

Blood work in June showed TSH .05 ( range is .30-4.70) my T4 Free is 24.3 (

range is 9.1-23.8) and my Free T3 is 16.8 ( range is 2.5-5.7 )...

She suggested the iodine treatment...but the doc in nuclear medicine advised

against it....said to give me a couple more months on the increased dose to

see if the levels come down.,...The endocinoligist has suggested surgery....but

held off on that also....She was not impressed with its success rate....

I don't feel any better...yes the increased Atenonol has helped with

tremors...but I am still going through states of confusion and panic.....mood

swings...insomnia...blood pressure fluctuates...muscle and joint aches and

pains...(especially during rest periods...)..etc...

Blood work in July 2003 showed my TSH was still .05 and my T4's were 24.1 and

T3's at 20.4......Symptoms pretty much the same as in June...accept for added

Vioxx ( antiinflammatory to ease the joint ache and pain ) has helped a bit

with pain...

August 2003 blood work showed TSH .05....T4 " s at 24..and T3's at 18.6...

Endo wanted to perform surgery as soon as my levels had registered...but

surgeon to perform rules against it...he wanted my levels even lower before he

attempted and also leave surgery as a last resort....She then suggested the RAI

and the nuclear specialist suggested to hold off that my levels were to high...

So here I sit...on 900mg a day of PTU....100mg a day of Atenonol and 50mg a

day of Vioxx.....my next appointment is with her on September 26th....

Currently the confusion and panic r still strong....(Doing things

backwards...and doin things without even thinkin)

I found a web site and realized i am not alone..and that thyroid problems do

exist in others and in different forms....

What i really want..is to learn if my endo is doin the right thing by the way

she is managing things...(frankly i think i am being overmedicated)....and

what other alterntives r out there in regards to herbs and non-medicinal cures

to curb side effects......?

if anyone can help that would be fantastic....

My name is Allie

[Guest guest]

Hi Allie,

I think you posted on Mediboard?

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=005597

I'd be inclined to agree that I think 900 mg is too much, especially for

weeks. Perhaps you can be seen earlier. Also, you might want to ask about

switching to Tapazole, if the PTU doesn't seem to be helping. You say

" heart rate at a whoppin 92 " ; well, that is high, but not terrible -- so

try to stay calm. I would be worried about being on that high a dose, and

it may cause you problems, like a bad reaction. The PTU only needs to be

high enough to do its job in blocking thyroid hormone production. A dose of

900mg is more appropriate for a thyroid storm

http://www.fpnotebook.com/END190.htm. Perhaps you can try acupuncture to

help relieve the symptoms. I think I would also ask to switch to Tap.

At 11:55 AM 9/1/2003, you wrote:

>I am very relieved to find out that i am not alone at battling this

>disease......

>In March 2003 was i was diagnosed with Graves Disease. My enodcrinoligist had

>put me on PTU right away at 200mg /3x a day...and also on Atenonol at 50mg/1x

>a day...to ease the tremors and lower my heart rate....My blood pressure was

>rangin between 160/89 to 190/70...and my heart rate was at a whoopin 92....