Hi all!
I have recently been diagnosed with Graves disease. I have been referred to specialist who have started me on the block and replace. I don't really want to do this as I don't want to introduce thyroxine so have been self medication by altering my doses of Carbimazole. Has anyone else tried this and how did it go?
Hello Wendy
I can't comment on exactly what you ask, but would just like to ask, have you had your antibodies checked and were you positive for either TSI and or TRab antibodies which are specific to Graves Disease.
Graves is an autoimmune disease and your thyroid is the victim of an attack by your immune system. It's because the thyroid is such a major gland that the symptoms experienced can be considered life threatening.
There is an excellent stateside website which, like this amazing site, offers an open forum for all people to use and learn from, as well as being a leading influence into Graves Disease research, and is run by Elaine Moore who has Graves herself, and found no help when going through the system in the late 1990's.
I have Graves, diagnosed 2003 and treated with RAI in 2005. I was only ever treated with Carbimazole but it relieved my symptoms and I was able to continue to work.
I am now with Graves, thyroid eye disease and hypothyroidism and am now self medicating since monotherapy with Levothyroxine eventually stopped working for me.
I would repeat what pennyannie has so wisely said: make sure you've had your antibodies tested - TRAB or TSI - before taking anything. It could be that you don't have Grave's at all.
Do you always get a print-out of your blood test results? It's your legal right to have one. It's important to know exactly what they've tested and what the results were, and why they made their diagnosis. Far too many people are misdiagnosed with Grave's because doctors don't know the difference between Grave's and Hashi's. 
Have you told your Endo you are self treating ? they will be looking at your results assuming you are on block and replace as prescribed. Personally having had Graves for a very long time I would never have tried to treat it myself as things can go very wrong.
Hi,
Yes, I have had TRAb tested, it was 14.1 at diagnosis. I do have letters from the hospital with all my results. I haven't told them I am self treating, would the tests they do still not be the same whether I was on thyroxine or not? I am also getting acupuncture and trying some herbal remedies.
I am curious to know your reasons for not wanting to introduce levothyroxine. I have been on block and replace for 4 years now and am doing well on it. Many patients on carbimazole alone start to become hypo and yet they still need to take it for its immunusuppressant effect. The only way round this is to add in levo until your antibodies reduce enough to go into remission. It is the method favoured by Elaine Moore who is THE Graves expert
Hi,
I don't want to introduce levothyroxine as to me it is just adding another poison into the body. I would rather do as much as I can naturally if possible and only started the carbimazole to get over the initial hyper phase really. I have read about many people on this alone and managing their symptoms using this method. So I don't belive that levo needs to be added... It would be good to hear from someone who has done the same.
I had my levels checked last week and they are all within normal range. This prices thet levo doesn't need to be added..
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