Re: dosage of ATDs---Liz

[Guest guest]

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.