[Mforsberg21]

#1060569

I was diagnosed with Graves 2 months ago. My TSH level was .005 and my T4 level was high end of normal. I have suffered with all the symptoms since my early twenties and am now a 44 year old male. I was referred to the endo by a cardiologists after severe palpitations. No heart problems but 100 bpm sustained heart rate caused the referral. I noticed 3 years ago my eyes were bulging and swollen mostly in the am. I thought allergies. It lasted several months but subsided. Had several bouts since and noticed looking at picture archives that there has been slow permanent bulging. When I went to the endo 2 months ago my eyes were a little bulgy but not having an episode in over a year. Prescribed Methimazole 20 mg daily. At first I felt better. After two weeks I got the worst attack on my eyes ever. Went to the ophthalmologists who confirmed Graves Eye. He sent me back to the endo who doubled my Methimazole dose to 40 mg daily and gave me Zanax for anxiety. I feel tired and sluggish and I’m sleeping a lot but feel ok. Problem is my eyes look horrible. Worse than ever. Endo gave me prednisone and symptoms got a little better but a few days after treatment I look like I have aged 10 years and my eyes are horrible and painful. Has anyone had this happen to them?

[Kimberly]

#1183391

Hello and welcome! I’ve never heard of methimazole *causing* a TED flare; in fact, patients on methimazole are generally less likely to experience TED than those who are treated with RAI.

TED symptoms can come and go, and it’s not well understood why. I’ve heard a couple of doctors at our conferences mention stress as a possible trigger.

For most patients, the TED occurs in conjunction with thyroid dysfunction, but that’s not the case for everyone. Some get TED before any thyroid issues develop, and others get TED years after treatment.

As you have found, the prednisone is a temporary fix that can provide symptom relief, but it is not a permanent cure. Doctors generally wait for TED to run its course, and then there are surgical options to restore appearance once the disease has stabilized. (One exception is if you are experiencing compression of the optic nerve – doctors will do surgery right away in that case to save your vision).

In the short term, you might find that elevating the head of your bed using blocks or using a wedge pillow can give you a bit of relief from the a.m. swelling. (Just using extra pillows is not as helpful, as it’s likely to hurt your neck!) Some patients can also identify avoidable triggers that make the a.m. swelling worse, such as alcohol, sodium, or sugar.

We do have many posters here who have experienced all the different stages of TED, so hopefully, you will get some additional input here.

Take care – and keep us posted!

[Mforsberg21]

#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.

[PSylo]

#1183393

Hello,
I haven’t been on this site for awhile. I am a 55 yr female with TED. I’ve spent the last 2 years learning as much as I could to minimize my risks with TED. Long story short……
I was told for many months that I just had allergies, until my eyes were so painful, bulging, dry, eyelid retraction, double vision and not to mention down right scary looking. The whole ordeal really tested my ability to cope with the cards that I had been dealt. But… the good news is after finding a wonderful ocular plastic surgeon/ophthalmologist (who does specialize in Graves Opthalm) at Wills eye hospital, my spiraling life seem to have some ray of hope. I had been to Dr’s at Johns Hopkins and Wills Eye in Philadelphia and finally found the Dr. who helped me with my TED. I was told by many Dr. that I had to just let the TED run it’s course. I could not accept that answer. My Dr and I were very proactive to minimize the outcomes of this disease. I did radiation treatments and injections, in order to, again, minimize the effects. Once able, we did surgery to reconstruct the eyelids. I was one of the lucky ones, and I did not need decompression surgery.

I did not know that I had Graves until I had the eye issues – I to take methimazole, after being diagnosed with TED (actually stopped for awhile due to remission). Please now that I am only giving you my story and what I did.

Graves eye is ‘simply another disease. Another place to gather research is the Kellogg Eye Center with Michigan University – Dr. Raymond Douglas

Educate yourself and be proactive. Good Luck

Pam

[Raspberry]

#1183394

Hi MForsberg21, sorry you are having to join us but welcome! You might be interested in the study (don’t have the link handy) that shows worsening or onset of TED after RAI is linked to they thyroid levels being allowed to go too low before hormone replacement is started. This is conjecture but it seems to me that a similar dynamic could happen if someone is hyper and their levels drop rapidly from a high dose of methimazole and they stay too low. I would encourage you to make sure that your doctor is not determining your dose of methimazole based on TSH as it tends to be suppressed especially early in treatment for Graves’ patients. Free T4 and Free T3 are the recommended tests to dose by. As always please think about a second opinion…..this stuff is hard enough and we need all the options possible. Good luck to you!

[Mforsberg21]

#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!

[Kimberly]

#1183396

Hello – Raspberry raises an interesting idea on whether going hypo on anti-thyroid meds could have contributed.

Not sure if you are getting T3 tested, but at least the T4 should provide some info if you have hard copies of your prior labs. If that is at the bottom end of normal, or even below normal, remind the doc that the medical guidance notes that TSH can remain suppressed early in the treatment process and is not a good benchmark for dosing.

Hopefully, you will have a good experience with the new doc!

[Mforsberg21]

#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.

[missygail]

#1183398

I have taken methimazole twice in the past 3 years for about 4 months at a time and have never had an eye issue. Good luck!

[Kimberly]

#1183399

@ Mforsberg21 – I’ve not heard of a doctor doubling a dose of methimazole without a blood test to back it up. That’s good that you are getting a second opinion.

You might call and see if you can get new labs done before your appointment, so that you can spend the appointment time discussing the results, rather than doing that by phone after the fact.

And if you start feeling symptoms of hypO coming on, definitely get labs done ASAP, even if you have to go to your primary care doc or an urgent care center for this. Every patient is different, but common symptoms can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

Keep us posted!

[Mforsberg21]

#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]

#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.

[Kimberly]

#1183402

Hello – Social and family issues are definitely impacted by thyroid eye disease. Hopefully, others will chime in here with some ideas on explaining this situation to your daughter.

It’s common to see some improvement once TED has run its course, but for most patients, the improvement isn’t 100%. Once TED has reached the inactive phase, there are surgical options if eye appearance and function are still compromised.

For those with Graves’, our relationships with our endo will be fairly long-term. I’ve been seeing mine for 7+ years. If you don’t feel 100% comfortable that your endo understands Graves’ and that all of your questions are being answered, keep “shopping”. The “Looking for a Doctor?” thread in the announcements section of the forum has some helpful links. It can be a frustrating process finding a doc that is the right fit, but you are the customer – and you need to be happy with the service that you are getting!

[Mforsberg21]

#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.

[Kimberly]

#1183404

Hello – Glad that you were able to get in to see an ophthalmologist so quickly!

We are fellow patients here, not doctors, but I’ve not seen any research or heard of any other patients stories where TED was triggered by methimazole.

Many opthalmologists (although not all) believe that TSI is connected with the activity and severity of TED, so your TSI results could also explain the recent change in eye symptoms.

You and your doctor will need to agree on next steps, but keep in mind that being either hyper *or* hypo can increase the risk for eye symptoms. (TED can strike at any time, before or after having thyroid issues, even if levels are normal, but the risk seems to be higher when hyper/hypo).

If I read your initial post correctly, you were subclinical hyperthyroid (TSH too low, T3/T4 normal) when you started taking the meds. In many cases, doctors will use a “watch and wait” approach for SH. However, treatment is recommended if the patient is symptomatic, so the fact that you were having heart issues is probably what convinced the doc to start treatment. So that’s another factor to consider as you and your doctor make the decision to decrease or eliminate the methimazole.

I’ve probably made this more confusing and not less confusing – but there are a lot of moving parts to consider when dealing with Graves’ and TED!

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