Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hi all,
I had an appointment with my endo yesterday and I am starting to really dislike her. She came close to all out laughing at me. I have been pretty much telling her what I want to do as far as testing times (4-6weeks) and dosage and she reluctantly would go along with it. Although I always got the talk "I am the Doctor here and its recommended you not change doses without asking me and we really do not need to test before 12 weeks". I always feel guilty not doing what she says... I was on a dose of 2.5mg for one year and last testing in January I was in the lower end of 'normal" FT4 1.1 (0.8-1.5) and FT3 3.5 (2.2-4.0) so I cut the dose in half to 1.25mg. I then retested last week and FT4 is 1.3 and the FT3 is 4.0. She didnt request the TSH so I had to call and insist on that- it was 0.02, down from 0.04 in January.
She says she NEVER prescribes less than 2.5mg. She will cut back on the days taking it. So 2.5 every other day. I told her I was cutting my 1.25 in half because when I only took it in the morning I had allot of hot flashes at night, so went to the twice a day. Thats where the laughing went on. She said there is no way I could cut the 1/4 pill in half and I do not need to do that. MMZ is very low releasing.
I also asked about nutrition, was there anything that I can do such as gluten free or dairy free that might help as my TSH is not coming up. She said there is nothing in the literature that supports this. I just have to be patient and the TSH will come up. It may take months. She said I might as well stop taking the 1.25 since its such a little amount! Or go up to 2.5mg 3 times a week.
I asked about antibodies to my TSH as I read on here and someone suggested that I might have that as I have been staying hypo. I brought an article about it to her, she wouldnt look at it and said thats not for people with Graves.... huh??
She wants to see me in 4 months! Well I think I will stay on the 1.25mg and go elswhere...
I dont know where to look and I want it to be covered by insurance of course. Any suggestions? Thank you all
Mary
I had an appointment with my endo yesterday and I am starting to really dislike her. She came close to all out laughing at me. I have been pretty much telling her what I want to do as far as testing times (4-6weeks) and dosage and she reluctantly would go along with it. Although I always got the talk "I am the Doctor here and its recommended you not change doses without asking me and we really do not need to test before 12 weeks". I always feel guilty not doing what she says... I was on a dose of 2.5mg for one year and last testing in January I was in the lower end of 'normal" FT4 1.1 (0.8-1.5) and FT3 3.5 (2.2-4.0) so I cut the dose in half to 1.25mg. I then retested last week and FT4 is 1.3 and the FT3 is 4.0. She didnt request the TSH so I had to call and insist on that- it was 0.02, down from 0.04 in January.
She says she NEVER prescribes less than 2.5mg. She will cut back on the days taking it. So 2.5 every other day. I told her I was cutting my 1.25 in half because when I only took it in the morning I had allot of hot flashes at night, so went to the twice a day. Thats where the laughing went on. She said there is no way I could cut the 1/4 pill in half and I do not need to do that. MMZ is very low releasing.
I also asked about nutrition, was there anything that I can do such as gluten free or dairy free that might help as my TSH is not coming up. She said there is nothing in the literature that supports this. I just have to be patient and the TSH will come up. It may take months. She said I might as well stop taking the 1.25 since its such a little amount! Or go up to 2.5mg 3 times a week.
I asked about antibodies to my TSH as I read on here and someone suggested that I might have that as I have been staying hypo. I brought an article about it to her, she wouldnt look at it and said thats not for people with Graves.... huh??
She wants to see me in 4 months! Well I think I will stay on the 1.25mg and go elswhere...
I dont know where to look and I want it to be covered by insurance of course. Any suggestions? Thank you all
Mary
I used an endo at first but found them incompetent when it came to Graves. The endos in my area are more Diabetes orientated. I found an "anti aging Dr." They ususally don't take insurance but some do. You can usually find them if you go to the ZRT website. https://myzrt.zrtlab.com/tools/FindProvider this is a hormonal saliva test that many cutting edge physicians and PA use that know how to treat hormonal imbalances. I found that these Dr. are open to suggestions. Own your disease. Keep a copy of each lab in a folder and track your results. Put a date, how much methamazole etc you are taking and how you feel.
Also, seriously look in to LDN, Low dose naltrexone. I was never able to control my numbers until I started taking LDN. I developed Graves in 2006 after my second pregnancy and last lab was taking .62 methmazole every third day by cutting a 5mg tab in to sixths. So, yes these tablets can be cut small, especially the flat ones.
Maybe a holistic doctor would be the way to go with?
{{{hugs}}}
We really dont need the Endo's...if we can find a doc that prescribes the meds and understands the labs...that's all we need. The most important thing is self education on this disease...when you do...you have a much better chance of stabilizing and healing your immune system...which in turn heals your thyroid and eyes..
Here is a link to Top Thyroid Docs...its a good place to start...Big Hugs...Kathy
http://www.thyroid-info.com/topdrs/colorado.htm
http://www.thyroid-info.com/topdrs/#us
My endo too wanted to do RAI. Every time I saw her in the first year and a half she still said she thought I should do that. I hope she learned from me that it's ok to wait and try meds. I feel sorry for the people she is radiating!
Thank you again
I've worked with NMD's. The one drawback is that is can be very cost prohibitive, between the appointments and supplements.