[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183405

Hi Kimberly. I actually went to the endo initially to verify dosage for testosterone therapy. I recently moved and found a new Dr who redosed my testosterone at a much higher dose than my old Dr. I went to an Endo to verify which was correct. I mentioned that 5 years ago I had something unusual show up on a pre op exam with my heart and had to see a cardiologist. The cardio said my heart was fine but I had a sustained heart rate above normal and referred me to an endo which I never went at that time. (left all the timeline of all that out in my first post to save time) I mentioned this at the appointment with the first endo. He did a testosterone blood test and also tested my thyroid levels. TSH w reflex T4. Based on that I was given Methimazole. Two weeks later the TED. My MRI yesterday showed Swelling but no damage to my optic nerve yet. I was given Dorzolamide drops for the high pressure. My prednisone dose is being dropped to 20mg daily. Questions…How does Radioactive iodine treatment raise your risk for developing TED? If someone has Graves but thyroid levels are staying in the normal range what is the treatment if any? What is the prognosis for someone who doesn’t get any treatment? I do periodically have heart palpitations, rapid heart rate, anxiety, fatigue probably made worse by stress. Other times I go long periods with no symptoms probably less stressful times not to mention adding and subtracting environmental factors further weakening the immune system. I mean if TSH is .005 doesn’t that mean the antibodies are controlling the thyroid if T4 is normal? That’s what is confusing to me. In a perfect world your TSH level is normal and T4 normal. Hypothalimus controlling the thyroid by way of the pituitary via TSH. If there is virtually 0 TSH but T4 is normal doesnt that mean something else is stimulating the thyroid to produce hormone? Thyroid Stimulating Receptor Antibodies right? Basically your immune system. I tested positive for TSI. In my case couldn’t lowering my T4 with high dose Methimazole cause increased stimulation by the antibodies who are the ones controlling the thyroid but also the ones that “stimulate” (my opthamologist corrected the word attack with stimulate) the soft tissue in the eyes? The immune system is basically controlling the thyroid. Fluctuations in thyroid levels would cause the antibodies to react. To stimulate the thyroid more to produce more hormone because the levels are dropping. Could this increased “stimulation” effect the eyes which resemble what the antibodies are trying to stimulate in order to keep the T4 levels within their acceptable range. I see people are reading my posts but not giving any input. Lol. Either I’m an idiot or somewhat on the right track. I guess if someone could just answer how someone could have a TSH level of .005 and T4 normal? Thank you Kimberly for the responses.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183403

Thanks Kimberly. Your responses are comforting. I saw an opthamologist at Baylor College in Houston as referred by my endo early this morning. I have developed serious enough eye pressure in both eyes that an MRI was done immediately. I was prescribed Dorzolamide-timolol drops for the pressure and reduced prednisone to 20 mg a day because he said prednisone can help with inflammation but can contribute to protrusion. He wants to see me every week at this point. I also received my blood labs from last Friday ordered by my new endo also at Baylor in Houston. Positive for TSI the is level 485. T4 has gone from high range of normal to now mid level of normal. My T 3 levels were tested for the first time and were high end of normal. TSH level was .1 vs .005. Peroxidase level 1 and thyroglobuline antibody less than 1. He sent an email with the results saying I do in fact have Graves and to continue 20mgs for now. I sent him a response with all the concerns of my research findings stated in my prior message on this forum. I am afraid in my condition taking anti thyroid medications could worsen the TED. I asked if I could stop “cold turkey”. He addressed my question with, “No I would like to taper you off the Methimazole if that is ok with you”. His plan is to slowly take me off. Interesting. I don’t understand my first endo not ordering TSI and other antibody testing after my first lab showing TSH level .005 and T4 high end of normal. He prescribes Methimazole at 20mg daily I go back 2 weeks later with horrible TED and he doubles my dose to 40mg (without ordering new labs) and my TED got worse. Could someone explain this to me like I’m a 2 year old. If you are positive for TSI and you have Diffuse Toxic Goiter with Observed Opthamolgy (my first endo’s first diagnosis after his first and only blood test) and you prescribe high dose Methimazole couldn’t that cause a TED flare up if the patient isn’t put on high dose corticosteroids at the same time and closely evaluated with further and more frequent labs? On the My Patient Fusion Account, started with my first endo, he changed the diagnosis to “Diffuse Toxic Goiter with No Mention of Thyroid Crisis or Storm” soon after I started the Methimazole. I’m not pretending to be a Dr. I’m just going off the info I have gathered online. I just want to help other people by telling my story. I would recommend having antibody testing if you are in a similar situation as I. I know not all people will necessarily develop TED from this type situation. (at least that’s what some research suggests) I am only telling my story. From now on before I start any treatment for this Disease I will research extensively. And then research some more and ask more questions. It’s too late for me now. All I can do is try to keep my eyes from getting worse and hopefully correct what can be corrected when the hot phase is over. I guess it could all be coincidence with the TED flare up coming on 2 weeks after I started Methimazole. I am new to this disease but am trying to learn. I welcome any responses even if you think I’m wrong or confused about anything.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183401

I could also be absolutely wrong. IDK. All I know for sure is it doesn’t matter what my dose is. Since I started the Methimazole my eyes are bulging the same. hopefully my labs will confirm something.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183400

Hello. I saw a new endo Friday. He was puzzled as to why my former endo doubled my dose without new labs after I came back 2 weeks later with the TED. He lowered my dose and is doing more labs. He referred me to a new opthamologist as well which I see tomorrow am. I have been reading a lot. My TSH levels were very low .005 and thyroid hormones in the normal range when I first went to my former endo. I think my immune system likes it that way. When I started the Methimazole my thyroid hormone levels dropped causing my pituitary gland to release TSH into the bloodstream attaching to there receptors on the surface of my thyroid. I probably have TSH receptor antibodies that went on the offensive attacking my thyroid and the soft tissue behind my eyes. I came to this conclusion this weekend, after I had already seen my new endo Friday, researching online. I know the process is more complicated than that. I’m not sure if he included any antibody tests in my new blood work which I haven’t got back yet. Both endo’s have English as a second language. I don’t know if they don’t know much about my problem or don’t know how to communicate what they do know or they are not telling me. I showed the new endo before and after pics and he said my condition was mild to moderate. Acted as if it was no big deal. Well it is to me. My 5 year daughter said she was scared of me because my eyes were big. He gave me 30 mg of prednisone daily until my labs come back. Does anyone know if the bulging has any chance of reducing after this has run its course. The swelling around the eyes is helped with prednisone but not the bulging. Thanks.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183397

Ok. Thanks Kimberly. I have had about three episodes of “allergy attacks” on my eyes in the past 3 years or so similar to this but not as bad. Usually the swelling and bulging lasted for a month or two but subsided. After looking at pictures taken during that time I noticed the bulging actually never subsided completely. I had been over a year with no problems with my eyes when I started the Methimazole 2 months ago. I only had the one blood test just before which showed my T4 as high end of normal and TSH .005. No test for T3. I felt well for two weeks then went back with the eye symptoms and worsening heart palpitations. The Dr doubled my dose of Methimazole from 20 mg to 40 mg daily. He didn’t order another blood test. All the while my eyes are worse. I sent him pics of my eyes a week after the last appointment and he gave me the prednisone which helped temporarily with the swelling. I then went to urgent care last Friday with severe eye pain and swelling. The urgent care Dr gave me more prednisone and pain meds and advised me to get another opinion from an Endo specializing in Graves. I’m going to Baylor.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183395

Thank you all for your replies and providing a lot of helpful information. Nice to know there are people out there willing to share their stories to help others. I live in the Houston,TX area. The urgent care Dr advised me to get a second opinion from a local university medical branch that has an endocrinology department specializing in Graves. I have an appointment at Baylor College of Medicine in Houston next week. I wil keep everyone posted so that maybe someone can learn from my experiences. Thanks again!

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183392

Thank you for your response. I am grateful for your insight. I ended up at the local urgent care Friday after severe headaches and eye pain. My blood pressure was 159/110. He gave me pain meds and another round of prednisone to get me bye until I can see my endo. Today much of the swelling is gone and my vision is better. However the prednisone seems to do nothing for the bulging. Luckily I had deep set eyes to start so I don’t look too scarey. I’m still confused as to why the sudden extreme attack two weeks after I started the methimazole for the first time. Probably stress related coincidence as you say. I wish I could have known sooner about my disease as my symptoms were misdiagnosed for 20 years. A cardiologist even diagnosed me with mito valve prolapse he said causing my heart palpitation attacks when they first started in my early twenties. All this time I have been taking antibiotics before getting my teeth cleaned every six months. Lol. Attacks on my eyes and skin rashes were diagnosed as allergies. My depression and sleeplessness were treated with anti depressants and sleeping pills. My ED with Viagra which seemed to make my “eye allergies” worse. I guess I am grateful to be treating the source now and I am feeling better over all minus the TED flare up. Hopefully I can find a good eye surgeon after I get control of my thyroid. Thanks again for the insight. Your respose alone made me feel better.

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