[bodidiang]

in reply to: EYELID SURGERY POST OP #1062804

Hi Shirley,

Glad your surgery is behind you now and you recover quickly. Wishing you the best with your eyes and hope your feeling better real soon.

Diane

[bodidiang]

in reply to: Living with both Graves and Hashi. #1063647

Thanks Bobbi, I will look into that. Appreciate the info.

[bodidiang]

in reply to: Living with both Graves and Hashi. #1063645

It is nice to be able to see that your never alone with this disease and there are so many people that have or are going through the same thing as you.

Helen, I never did take Methimazole but probably should have. I live near Fort Myers, Florida and there is a shortage of Endocronologists in this county and it takes a long time to get in to see someone. I am thinking of looking into a different doctor for another opinion where Graves/TED is there specialty. My endo had once mentioned sending me to John Hopkins in Maryland. I just don’t want the expense of that so I am going to look around this area.

Have a great day everyone!
Diane

[bodidiang]

in reply to: Living with both Graves and Hashi. #1063641

Thanks Bobbi and Shirley for your replies, I actually have had 1/2 of my thyroid removed and thought about asking if i should have the rest taken out. I had a nodule on my thyroid over 10 yrs. ago and the doctor then told me it was mostly follicular and something that he felt would be best to have removed, so I did. I really didn’t have much of a problem regulating it until the past several years. It did fluctuate slightly here and there. My neuro opthalmologist told me not to have my endo. dr. hold back on synthroid because of my eyes also. So hopefully now that the dose is increased I will start to feel a little better. It has been really tough trying to work every day and dealing with the many problems this disease causes. Shirley, wishing you the best with your eyelid surgery. You have been through alot with your eyes. I have not had to have any eye surgery but my eyelids are just not the way they used to be. When I put eyeliner on I have a really hard time. I do still have episodes of the double vision but not as bad as it was and only once in awhile. For a very long time I couldn’t even touch any where near my eyes without everything being distorted. I am so grateful that is getting better.
Diane

[bodidiang]

in reply to: TED and high eye pressure #1062923

Hi Susan,
I was put on Restasis for dry eyes and Lotemax a steroid type med when I needed it. I am now on just Optive moisturizing drops. I couldn’t stand the pain in my eyes when I woke every day especially my left eye until I got drops in. I have had numerous field vision tests and other eye tests done. I was told I do not have Glaucoma. I always had higher than normal pressure in my eyes but not as high as it has been since getting TED. I still suffer daily from TED but it is just not as bad as it was. My eyes do not look like they used to before TED and I don’t think they ever will. My eye lids still swell and guess my eyes do also. It was the best thing I ever did was to see the neuro opthalmologist for treatment. Before I saw him I was told that I had conjunctivitus or pink eye and was given steroid drops. This went on for about 6 months or more. So a good Neuro-opthalmologist is critical with TED I think. Hope this helps you and if you have any questions please let me know.
Good luck to you.
Diane

[bodidiang]

in reply to: Living with both Graves and Hashi. #1063638

Hi,
I also have both Graves and Hashimotos. I have high antibodies to both of these. I have been battling TED for over 2 years now which is starting to settle down. My endo just can’t seem to regulate my TSH levels. I go both Hyper to Hypo and my TSH presently is 16. My dr. did not want to boost my Synthroid up because he was afraid I would go back to the double vision problems again if he did. He agreed to icrease it though and hope I don’t go back to hyper. I was suffering at one time with thyrotoxicosis. It has been a constant battle and I hate this disease!
Diane

[bodidiang]

in reply to: TED and high eye pressure #1062919

I have had TED for 2 years now and have been seeing a neuro-opthalmologist for this. I am a suspect for Glaucoma because of the high pressure and the fact I had a grandmother who did have Glaucoma. My high pressure readings have been mostly 25 – 29 . I saw the dr on Thursday and my pressure in my right eye dropped to 15 and the left 24 which is the worse of the 2 eyes. He was so glad to see the pressure drop and said it means my TED is beginning a milder form now.
Hope this info. helps and your pressure readings drop.
Diane

[bodidiang]

in reply to: Newly Diagnosed W/Graves & Endo. Visit #1070887

I will contact another Endo. doctor for his advice and will ask to have the Free T3 and Free T4 checked. I looked at my blood work and did see that T4 total was 9.9. I am Hyper now but in the past I kept getting Hypo. Thanks Valerie, Kimberly, HyperM, and Mamabear for everything. I felt so much better after reading your posts. I started reading some info. on Graves and it has been very helpful. Thanks again, Diane

[bodidiang]

in reply to: Newly Diagnosed W/Graves & Endo. Visit #1070882

I had a problem with my first posting earlier today so I would like to try it again.

My regular doctor sent me to the endo. for treatment of my Graves. It was diagnosed through blood work I had done when I saw the Neuro Opthomologist for my double vision problem and the pain I kept getting daily in mostly my left eye.

I went into the endo. office and the first thing he said was why was I there. I told him for Graves disease and he said again yes, you have that but why are you here. So I told him for treatment of it. Then he says, there is no treatment. I start to reach for a copy of my blood work to show him and he says he does not want to see it. He does not monitor levels.
That is when he advised me to just take my Levothyroxine according to how I am feeling. If my heart is pounding don’t take it. Maybe just a couple times a week a 1/2 dose.

I start to ask him about Graves and he tells me how the antibodies are attacking my body. Then he starts to draw a diagram of the antibodies and what they do and looks up at me and shouts "stop looking at me and look at the paper". I was looking at the paper also. Then goes on to ask me what my education is! I tell him I am a high school graduate.

When I ask him what I can do he gets aggravated because he already told me there is nothing he can do for it. If I am having problems with my eyes then see an eye doctor. I tried to tell him I was also having problems with the Neuropathy in my feet and have been having terrible problems with Dizziness and balance. He said it was all related but I don’t know.

He said I notice you have a ugly scar on your neck and why would you allow anyone to operate on your thyroid. I explained this was done many years ago and why. He mentioned that some people have radioactive treatment to destroy the thyroid but he would not recommend it. Then some people take some medication, you could have a steroid shot in your eye but he looks me up and down and says but it will make you fatter. I tell him how concerned I am about my eyesight and he says that yes, I am going to be blind, then says well maybe not. He also said I could have heart failure.
He said I did not need any further treatment and do not have any follow up appointment.

I called my regualr doctor immedicately after I left the appointment as I was distraught over this and he has not returned the call.

Thanks Diane

[bodidiang]

in reply to: Newly Diagnosed W/Graves & Endo. Visit #1070881

Thanks for the Reply,

I had a partial thyroidectomy over 10 years ago for a nodule on my thyroid. I have been on Synthroid and then Levothyroxine over the years and it seemed to be regulated pretty good. Then I had a Goiter for 2 1/2 years and problems with Hypothyroid mostly, then it would go Hyperthyroid. I always had regular blood work and adjusted to my medication doses. I thought the Goiter also got alot better. I just had a thyroid ultrasound done and do not know the results yet.

I went to the Neuorologist last year for terrible leg cramps and neoropathy in my feet but never could find out why it was happening. Then I went to see a Neuro Opthalmologist because I lost my eyesight when I was driving one day and I had several episodes of double vision since Christmas. He noticed right away that my right eye was bulged and larger than the left. He did alot of blood work and found that I had these antibodies which he referred to as an autoimmune disease. He had me go see my regular doctor. I did and he told me I had Graves and needed to see an endocrinologist.

My lab results are:

Thyroid Peroxidase antibodies 124
TSI 164
TSH, 3rd Generation 0.04
Angiotensin-1-converting enzme 4

Thanks, Diane

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