[Mforsberg21]

in reply to: Newly diagnosed with Hyperthyroidism and most likely Graves #1184022

I am just a patient. I have to abide by the rules of this forum. I can only say many things can cause suppressed TSH. With a T4 as low as yours and being almost positive for TSI I would worry about going hypo. You need to do what you think is best for your health.

I had sub clinical hyperthyroidism. I took 20mg Methimizole and 2-3 weeks later I had a horrible TED flare up. I went back to the endo and he doubled my dose. My eyes almost popped out of my head. However, I was experiencing slight symptoms of TED on and off for several years prior. Unfortunately the endo did no antibody testing at all. My TSH was heavily suppressed and T4 mid high range of normal. I knew nothing about Graves before taking the medication.

You are going to one of the best university’s in the world for TED. I am just telling my story. If you are negative for TPOab and positive for TSI you are very likely to have eye problems from most research I have read.

There are also many studies showing the relationship between Mitral valve prolapse and autoimmune thyroid dysfunction. Mainly Graves. Google mitral valve prolapse and Graves Disease. The symptoms of both are very similar.

Good luck and I wish you well.

[Mforsberg21]

in reply to: Newly diagnosed with Hyperthyroidism and most likely Graves #1184019

http://www.ncbi.nlm.nih.gov/m/pubmed/10646655/ I see your TSI isn’t quite positive. I have seen other studies done that support these findings.

I’m just a patient definitely not a doctor but your T3 is very slightly out of the range. Your T4 is low end of normal and TSH suppressed but not severely at least compared to mine .005. I have sub clinical hyperthyroidism. Which is to say my T4 and T3 normal range but TSH suppressed. My T4 mid upper though.

Your TSI is almost positive. You have heart palpitations and tachycardia. What about trembling, heat intolerance and sweating?

Have you had any issues with your eyes in the past? Excessive tearing, proptosis, redness or swelling? Maybe so slight you thought allergies?

Have you seen a cardiologist? I wish someone had asked me these questions. Just saying. Second opinions are never a bad thing. I am on my third Endo.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183433

How could my TSI be 480 and my T4 and T3 normal?

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183431

I wasn’t tested for TRab. It was TgAB from a different lab. One said Thyroglobulin and the other lab said TgAB. Getting my letters mixed up. I was positive for TSI but negative for all other anti thyroid test typically performed when Graves is expected. TPO or Thyroid Peroxidase antibody, TgAB or Thyroglobulin antibody were negative but TSI or Thyroid Stimulating Immunoglobulin positive.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183429

I was negative for all antithyroid antibodies including TRAB, Peroxidase, thyroglobulin, etc but positive for TSI. My TSH came back after 4months of Methimizole even though I reduced from 40mg to 5. I became hypo and quit. It seems some people develop TED shortly after starting Antithyroid treatment.

How can someone have normal T4 and T3 but TSH .005 and be negative for all antithyroid antibodies accept TSI? What is keeping T4 and T3 normal. How would treating someone in this condition with 20mg of Methimizole cause a severe TED flare up 2 to 3 weeks after starting? (I see Rasberrys reply on the first page) Also would bringing TSH to a normal level decrease TSI and help TED. I see some research that says restoring thyroid hormone levels to normal doesn’t necessarily help TED but I can’t find anything about restoring TSH. Thanks.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183427

Hi Kimberly.

I haven’t seen any research that suggests Methimizole or thyroidectomy can trigger TED or make it worse. However, I see a lot of research that says RAI can trigger a TED flare up or make it worse. Why does RAI make TED worse? Is it the Radio Active Iodine itself or a sudden drop in T4 causing a sudden rise in TSH? I see lots of research that says RAI can make TED worse but not much research that says why?

[Mforsberg21]

in reply to: Men With Graves’ and TED #1183994

So Jstephens your eye problems came shortly after thyroid surgery. Mine came 2 To three weeks after Methimizole treatment. However I can’t find any research that suggests either cause the onset of TED. I only find research that suggests RAI can cause the onset of TED or make it worse. Kimberley maybe you could weigh in. I’m just wondering why RAI makes TED worse? Is it the Radio active iodine itself or the sudden rise in TSH?

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183425

Hello everyone. Just wanted to update. Here is what I have learned in the past year or so since finding out I had Graves.

So there are two types of TSI antibodies. One that stimulates the receptors on the thyroid causing hyperthyroidism, the other mimics TSH and stimulates the TSH receptors in the cells at the back of the eyes. Unfortunately there is no test to distinguish between the two. You are either positive for TSI or not.

However, if you are negative for Peroxidase, TRB Antibodies, Thyroglobulin Antibodies but positive for TSI, more than likely you have the mimicking antibodies. If you have a blood test done and like me you have subclinical hyperthyroidism, that is your TSH is suppressed but T3 and T4 normal, I would be insistent upon doing Antibody testing!!! Especially if your Endo wants to treat you with 40mg Methimazole or even worse RAI.

So I go to an Endo for low T. He does TSH reflex 4. My TSH is .005 but my free T4 is mid high range of normal. Probably because I was taking L-Tyrosine in a pre workout supplement for the past 3 years which I have read can raise T4 which would suppress TSH. He orders no antibody tests. He gives me 20 mg of Methimazole and says I’m going to feel much better. After 2-3 weeks my eyes start to bug out. I go back and he gives me 40 mg. My eyes continue to get much worse. Hmmm why you ask?

I am not a doctor just an idiot. Don’t listen to me. I probably don’t know what I’m talking about. There is the disclaimer.

So I have the TSI mimicking antibodies that mimick TSH. When I start the Methimizole my T4 starts to drop. My TSH rises quickly. The antibodies mimick TSH and stimulate, more like attack, the TSH receptors in the cells in the
back of the eye. As I continue the Methimazole my T4 goes to the bottom of the range I feel horrible. I taper off and my T4 goes back to mid range of normal and I am pretty much back where I started,however, maimed with 28mm in left eye and 25mm right eye. When will the stimulation stop? I don’t know. Could be several years.

Needless to say I no longer take the L-tyrosine supplement that clearly states, “Do not take this if you have Graves Disease”. I have read it can raise T4 and cause TSH suppression. Unfortunately I never knew I had TSI antibodies until I found another Endo who did and put me back on the right track. However, I will never be the same.

Forget about antibodies, I can’t find any research that suggests anti thyroid treatment improves quality of life for patients with subclinical hyperthyroidism in the first place.

Had I elected RAI my TSH would probably have shot up faster probably causing worse stimulation by the TSI mimicking antibodies. Then after my thyroid is dead I would take synthetic thyroid hormone for the rest of my life which would suppress my TSH again? Doesn’t make sense to me. But that’s what happend to my mom. Like I said I haven’t talked to her in years. Well I called her. I asked her when she got the eye problems from her Graves’ disease. She only remembered that she had been taking diet pills and lost a lot of weight. That was around 2000. She felt hyper and went to an Endo who diagnosed her with Graves and treated her with RAI. Her eyes are much worse than mine. Her doctor told her she has Iritis and continues to get immunosuppressive shots in her eye.

Now remember I’m an idiot. Don’t listen to me. But I would do lots of research before you go messing with your thyroid. For lots of people Methimizole and RAI are a lifesaver. Many people need these treatments. For me in my case not so much.

Think about it…. Ted and the hyperthyroidism from Graves run their separate courses. But you must treat the thyroid before you can treat the eye disease. Hmmmm. Why? Because the TSI mimicking antibodies mimick TSH and if you don’t stabilize your TSH the eye problems will continue. That’s how people can develop TED years after treating their thyroid. They kill the thyroid, start taking synthetic thyroid hormone and they’re TSH becomes suppressed. You get a bad batch of hormone or don’t take it consistently, your T4 drops and here comes your TSH. If you have developed the TSI mimicking antibody they mimic TSH and stimulate the eyes. You can also get the reverse. Just my story that’s all. I’m not a doctor. Just a patient.

I doubt any doctors will help me after I post this but if it helps someone it’s worth it.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183417

Went to the Optho today. We reviewed the MRI results and in his opinion from looking at the thickness of the lateral and whatever other muscles that this has developed over time. The cause of the recent flare up could have been a reaction to medications. The high pressure from last week is now normal. The beta blocker eye drops or the reduction from 30mg to 20mg of Prednisone must have reduced the pressure caused from the reaction. He thinks the mild proptosis, swelling and tightness in the muscles are here to stay. He doesn’t see any evidence that suggests I am in the hot phase anymore. He is tapering me off the prednisone but keeping me on the beta blocker eye drops. He wants to see me in 3 weeks and possibly talk collagen injections or maybe eye lid surgery. Maybe. A very big maybe. One eighty from last weeks, “I need to see you every week” now that the pressure went from the 30’s to mid teens which he says is normal. I offered to show him pictures taken on Holloween 1 month before the “flare up” showing that my eyes didn’t look like this. He said “I don’t know. I wasn’t there.” Good one…

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183416

http://www.aetna.com/cpb/medical/data/400_499/0419.html
Thank you for your response Brondack. I wouldn’t expect anyone to ignore the advice of their Drs. That is certainly not what I think everyone should do. I mean I am not going to rely solely on Drs or Insurance Companies Protocols for treatment. I am researching everything myself and along with the advice of my Drs I will be involved in the decision making process more from now on. I have stated I am not a Dr many times and that I am telling my story. I have heard from other people that they went through many Endo’s before they found one that seemed to know enough about Graves. I wish I had done more research before I chose a Dr, started treatments and was more educated about the treatment protocols from my insurance company as to what to expect. I am new to this disease and am glad my eyesight allows me to do this research at this time. I am not a Dr or a nurse or a rep from an insurance company. I am a patient as well. I am not posting my experiences for anyone to go the same route as me. People are smarter than that.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183414

Hi Snelson. When researching the actual TSI antibody test I found that the test is used in pregnant women with Graves to predict the susceptibility of the fetus.
http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8634
It’s also used to monitor graves patients in remission. Just the point I was trying to make. And I don’t want to be famous. Not for this anyway. I am glad that you are feeling better and have completed the surgeries. I on the other hand am just beginning this horrible journey. I am simply trying to find ways to minimize my suffering and choose the path that is best for me. I’m not going to rely on Drs and Insurance companies with their protocol bullitens to do what they think is best for me. As long as I do have a say (as small as that is) I will stand up for myself. To do that I am trying to educate myself which isn’t easy. I am blessed that you are sharing your experience with me. For that I am truly grateful. Hopefully I will have an experience that I can share with others that will end with successful treatment.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183412

Sorry Snelson I didnt see your procedures initially at the bottom of your post. I am so sorry that you had to experience that. And doing the math it would seem your age didn’t make it any easier. I see you were diagnosed around 57 years ago with Graves. How did they diagnose Graves then? I am trying to learn. please don’t take offense to my questions. I was initially diagnosed from the very low TSH level and high end of normal T4. You say they didn’t have a test then for TSI. How could they distinguish between Nodular Thyroid Disease and and Graves? Maybe someone could tell me how someone develops TSI antibodies? I have read it can be passed through the placental bearier from mother to baby if the mothers TSI levels are above a certain level. My mother has Graves. Unfortunately my mother and I haven’t spoken in many years. She was a heavy smoker during her pregnancy among other things. If it is not passed to you from your mother, then you develop the antibody from a virus? Why are women more susceptible to Graves then men? I mean I must be a hot commodity. 3 in 100k men have Graves. Even less have TED. Houston has a population of about 1 million men. That’s 30 men. Probably 3 endo’so for every man with Graves. You developed TED 50 years after your thyroidectomy. You went euthyroid for 30 years (congrats by the way) then started the thyroid meds after going hypo and went 20 years then TED. At any point were you tested for TSI or other antibodies?

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183411

Of the information I have read it seems like there is controversy with just about everything. i have seen two opthos with two different opinions and two endo with different opinions. I bet I could go to 10 more of each and get that many more opinions and treatments. Those Drs learned from Professors who probably didn’t always have it right. It’s hard to wade through all the info out there and figure out what is wrong or right or right at this time but wrong later. Mercury amalgams for instance. When I found out I had an autoimmune disease I started googling everything about it. One possible cause that kept coming up was Mercury toxicity and the recent FDA investigative findings concerning Mercury amalgams. The FDA says they are safe but raised the classification from completely safe to moderately harmful after the recent investigation. So I read. They didn’t say alert!! Everyone with Mercury fillings get a hammer and chisel and get those things out of your mouth. That would cause widespread panic, lawsuits, and Mercury amalgams being flushed down the drain possibly contaminating the water supply. Or so I read. What about all the dentists that use them everyday and spent a gazillion dollars attending dental school learning to use them by the smartest professors at the best universities in the world. Some dentists who were the activists of this investigation lost their licenses and were declared whackos by their peers. However some dentists today quietly refuse to use amalgams. I unfortunately had an aunt who was a dental hygienist growing up. I have a mouth full. I have had a tonsillectomy, horrible asthma and Graves. It could have contributed or been the cause. Who knows. Too much controversy. I believe it was a prior Attorney General of Virginia who was leading the whacko dentists activists. I believe Mercury amalgams probably are harmful to some people who have allergies to Mercury etc. But either way I’m not putting them in my daughters mouth. I guess my very long point is that I am only trying to wade through everything and make sense of what is going to help me. Or maybe my daughter gosh forbid. It’s not easy. Who actually does the research, who tells the truth, and who just wants your money. Do I believe there was at least one other gunman on the grassy knoll? No. But I’m not convinced there wasn’t. I wasn’t there. Maybe my Graves is Making me delirious. Whhooohoo.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183410

Thank you Snelson for your story. Seems you have been through a lot as well. I’m glad your situation has improved and your TED has been treated and in remission. However procedures didn’t show up at the end of your post. My opthamologist, which I didn’t realize until yesterday, is listed in a link from this website as a leading specialist in TED surgical procedures. I will stick with him. He lets the students take the measurements of my eyes and talk symptoms and then comes in and gives his short term plan and gets out of there. He doesn’t seem to like answering my questions. He did order the MRI and suggested immuno suppressant injections were in the forecast. I can’t complain because I am at his mercy. I want one of the best surgeons and he is. My eyes seem to have stabilized as far as the swelling. The bulging and eyelid retraction are still there but look better minus the swelling. I still have headaches, aching pinching pain mixed with itching deep in the sockets and when you try to push on the eyes they have no flexibility. Like there is a brick wall behind them. I guess that’s what High pressure is? My Methimazole was reduced in half last Friday. My endo emailed that He wants to taper me off. I would rather just quit as I told him but I’m sticking with the plan. He also discontinued my TRT therapy last Friday as well so I’m feeling not so manly. My endo like I said has English as a second language. We definitely have a problem writing emails back and forth. Example: I asked if he could refill my pain meds and he said yes you can take pain meds. After back and forth emails Eventually a nurse took over for him and said their clinic was unable to write prescriptions for any controlled meds. This means he can’t refill my Xanax or adjust my Testosterone if needed later. Maybe that’s why he discontinued my Testosterone. Hmm. He isn’t giving me a long term plan and I don’t like guessing. I made an appointment with an endo that specializes in Graves that graduated recently from Baylor. My optho asked me what procedure I was considering to treat the thyroid and I had no answer as my endo didn’t give me any possible scenarios. English is her first language. I’m confused enough without that factor. I have an appointment Wednesday with the opthamologist who wants to see me every week. Injections in the eyes? Doesn’t sound fun.

[Mforsberg21]

in reply to: Methimazole trigger Graves eye? #1183408

Thank you Scanders. So I’m not a complete idiot. Someone notify my wife immediately. For years my daughter thought that was my name. Lol. I’m not suggesting Methimazole causes TED. It doesn’t prescribe itself. If someone has mild signs of TED which over the years were misdiagnosed as allergies your endo can see that easily. Your palpitations , nervousness, rapid heart rate were dismissed as mitro valve prolapse throughout the years. Your excess sweating because you must just have large pores. Insomnia and depression treated with anti depressants because your job must be stressing you out. Probably not your family doctor could see the signs or even you as they come on gradually. A cardiologists later decides you don’t have mitro valve prolapse but you need to see an endo because your heart rate is jacked. You have blood work done showing TSH .005 but your T4 is normal. What is possibly controlling your thyroid levels keeping them in the normal range if not antibodies? Especially if you show signs of TED like mild proptosis or slight eyelid retraction? You don’t order a TSI antibody test you prescribe high dose Methimazole. What will that do? Lower the very T4 that the TSI antibodies are controlling. Obviously they don’t do a great job all the time but they are keeping them in the normal range and or the range they think is normal at the time of your blood test. Now you have made them angry! They stimulate (as my opthamologist says not attack) the receptors on your thyroid to produce more T4 to stabilize the T4 levels that the anti thyroid meds have suddenly lowered. Unfortunately for you when they get angry like this they also mistake the soft tissue behind your eyes for foe which closely resembles the receptors on your thyroid. It’s probably not that simple. A professor of Endocrinology at one of the leading university’s in the world could probably make a few corrections with the proper terminology and wording of my very speculative hypothesis but if it walks like a duck. If it quacks like a duck. Then it must be a quack who would do something like that to someone. If you are in a similar situation please make sure you are tested for antibodies before you start a high dose regimen of anti thyroid meds even though your T4 is normal. If you go hypo you will make the beast angry. Then you may end up like me. Your eyeballs popping out of your head. I am not a doctor. I am telling my story. Nothing more.

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