I had anti body test against TSH receptor and it's positive so I must have Grave's disease. And I have a different anti body test (also thyroid related), sorry cannot remember the long name, but it's surprisingly negative.
The concerned me most is that when my GP first referred me to the specialist in hospital, the specialist basically trying to use RAI immediately but I refused to follow rather I preferred the medicine therapy...
The doctor and GP who referred me seems not too happy about it and they keeps telling me, it's ok you take Carbimazole now but most hype thyroid patient taking Carbimazole ends with hypo anyway, so why not use RAI now and just take one pill a day for the rest of your life... I am not happy with that, so I insist that I want to go on with medicine therapy.
But even for medicine therapy, all I am getting is carbimazole...Nothing more. After having carbimazole for about 3 month, my T4 have seen steady dropping (test every 2-4 weeks). Initially it???s slow but now it seems to be dropping very fast, see below: T4: 48->45->39.9->20.8->12.8 (normal rage 10- 21)
THS: No noticeable change, always < 0.01 or < 0.03
I have started seen the specialist when I got my reading from 39.9... And the Carbimazole dosage was 20mg, after 4 weeks my T4 reading is 20.8, the specialist surprisingly want me to increase my Carbimazole to 25mg saying my T3 and T4 are just about to go into normal range but they are NOT low enough, so hence I must have increase my daily dosage to 25mg.
Then I had my latest T4 reading 12.8 just last week after having Carbimazole 25mg for another 4 weeks, now it's to the lower end of normal range as 10 is lowest normal range, but this time the specialist only want to reduce my Carbimazole by 5mg saying you should have 20mg a day and keep it that way without tell me anything else at all.
Also regardless 25mg or 20mg, that seems to far too much then the maintenance dosage mentioned in this forum (5 to 10). And the specialist will not see my again in 4 weeks & I am really really worried that I will go hypo if I keep 25 or 20 dosage for another 4 weeks...
Please help me advice what's the correct should I on at my current stage ?
asked byGob (10)
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on August 25, 2013
at 04:30 PM
My endo wanted me to have RAI (I refused) and then he wanted me to have my thyroid removed. This was back around 1999.
PTU (the equivalent of Carbimazole, I believe) did not work for me. My levels would not normalize. But when I started mineral balancing, my levels became normal in 3 months.
The specific site I used to research the minerals is no longer maintained, but the information is still there, more or less. ithyroid.com
It's like putting together a puzzle, but it was worth it for me to keep my thyroid.
All the best!
on November 30, 2012
at 11:53 PM
I strongly recommend that you get a hold of Elaine Moore's book "Graves' Disease: A Practical Guide" if you haven't already. I have skimmed the book, and she explains many different treatment approaches. She definitely seems to be in favor of patients trying to put the disease into remission with anti-thyroid drugs (and is against the rush into RAI treatment in most cases). Apparently this is done quite successfully in Europe and Japan, but has been slow to catch on in the U.S. From what I gather, the anti-thyroid drugs (ATDs) play a role in stopping the autoimmune process. She also details the "Block and Replace Anti-Thyroid Drug Protocol." Here is a quote from the book: "In the block and replace protocol, a small dose of thyroxine is given in conjunction with ATDs. The rationale in adding thyroxine is to prevent the patient from becoming hypothyroid. Ideally, this would lead to fewer office visits and a prompt remission. However, some patients I know were kept on high doses of ATDs and low doses of thyroxine until they became severely hypothyroid. This protocol initially requires frequent monitoring, and the patient's individual disease course must be taken into consideration. Originating in Japan where it yielded remission rates as high as 96 percent, the block and replace protocol hasn't yet met with the same success in the U.S. Some researchers feel that the normal American diet with its high iodine content is to blame for the discrepancy. Another reason is that guidelines to determine remission are rarely used." (p. 146-147) Moore also has a helpful website:
Graves' Disease is potentially a very dangerous condition. I've been reading a bit on it, but I still understand very little (so please please please don't make any medical decisions based on what I have written). Moore's book, however, is a really great resource. It deals with exactly the type of questions you have. Good luck!
on September 06, 2012
at 08:42 AM
It's your body. Take the amount which seems right to you, monitor your symptoms and if you feel unwell, go to your doctor, find another one or order labs yourself. You want free T3 and free T4, forget about TSH if you're taking meds.
I'm on the other end, taking thyroid hormones daily and my doc has me dose on symptoms. Labs twice a year.