[Mforsberg21]

#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.

[scanders]

#1183406

I can’t make much sense of it either, but my endo says I keep trying to make this black and white, and it simply isn’t. For what it’s worth, my TED took off after I became overtly hypothyroid while taking methimazole. A TRab around that time had doubled from initial diagnosis. So in my mind, I don’t think it’s necessarily the MMI itself, but the resulting hormone levels. When low, wouldn’t the thyroid gland become active in an effort to produce more hormone, and in turn, more antibodies are also produced by the gland?
And “stimulated” my foot! I just had eye muscle surgery two weeks ago (my right eye ended up over by my nose), and decompression a few months before that. It happened so fast, it sure felt like an “attack” to me. There most likely is lid surgery in my future, as well. I still take MMI to try to manage my hormone levels, which remain very variable. But at least the eye disease stabilized so the corrective surgery could happen. just wanted you to know you’re not alone in this fight!

[Kimberly]

#1183407

Mforsberg21 wrote:

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? 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?

Hello – I don’t think doctors understand the mechanism behind RAI and the eye disease. One theory is that antibody levels spike following RAI, so this could be responsible for the increased risk of TED.

If T3/T4 are in the normal range, but TSH is too low, “watch and wait” is a common approach to see if T3/T4 end up going too high. However, treatment *is* recommended if the patient is symptomatic or at risk of cardiac issues.

The risks of not treating overt hyperthyroidism include heart issues, bone/muscle wasting, and thyroid storm, a serious and sometimes fatal complication. For subclinical hyperthyroidism, I think the risks are primarily bone loss and heart issues.

The current theory is that antibodies do play a role in suppressed TSH in Graves’ patients.

Hope this helps!

[Mforsberg21]

#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.

[snelsen]

#1183409

Hi All,
I am (again) super tired tonight. So just a word or two about my experience.

Now it is morning, I got a good sleep, so the world is better today.

My story:

I was a 22 year old student, married to a student, we had a 10 month old baby boy. I had Graves, but did not know it yet. An overview of the last 60 years (gulp) follows:

Graves’ diagnosis at age 22, little more history below. Put on Tapezol, which is the same drug as methimazole. As soon as it was safe, and my thyroid labs were in a safe range, I had a subtotal thyroidectomy. Because they left a tiny piece of thyroid gland on each side, I was euthyroid for 30 years or so. Then I had hypo symptoms, and began Synthroid.

My anxiety, weight loss, voracious appetite, tremors, inability to sleep and very fast heart rate, were all attributed to stress. I was very irritable, probably the one person I was nice to, was my little baby boy. Certainly my husband could attest that I was impossible to live with! All of this was attributed to being a new mother, breast feeding, and “doing to much.” Easy to believe in one way, but I knew something else was wrong, so went to student health on a break from working in the hospital. My heart rate was around 160! And when I held out my arms in front of me, the tremor was quite impressive! At that time, there were not further tests to do-no TSI, and the other ones I cannot think of now.

I developed TED 50 years later! I had a severe case, it lasted a long time. I had multiple procedures, which I think show up at the end of my post.
I have to tape one eye closed at night.

To Mforsberg21-It sounds like you are FINALLY on the right track. YOU HAVE BEEN THROUGH SO MUCH, and I am so sorry. If you want to talk to other men who have had this experience, I think there are a few on this forum.

Now you are with good people. I sure am glad. The one thing about doing investigate research, is for you to go to academic sites, to work with eye docs who know about TED, to endo who understand Graves’s. Lots of whackos out there!

Scanders has just had recent experiences with TED, glad she posted.

So, this is my story, or at least some of it!
Shirley

[Mforsberg21]

#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]

#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]

#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?

[snelsen]

#1183413

I think, when TED diagnosed, I did have the antibody tests. But I did not care. TED is TED, and I realized I needed to slug through it, with multiple solar shield fitover sunglasses which I left EVERYWHERE, lots and lots of eye drops, which i still have to use, lifetime forever, for dry eyes.

They diagnosed it cause of my “classic” symptoms. At some point, I did have a TSH, and it was .0004 or similar.

I can’t answer re TSI antibody development.
Makes no sense to me that the antibodies pass through the placental barrier, cause pregnant moms are not tested for antibodies, so how would they know?

I think Graves’ occurrence is a crapshoot, with some soft evidence that someone knows of another family member who had Graves’.

Good question re women and men. Probably the only KNOWN answer is that someone counted them, and noticed it with the frequency of women with Graves’ Could be hormonal stuff. Again, not sure if there is evidenced based research on any of this.

You, of course, are FAMOUS!

Nope, between the initial dx until finally a dx of TED, no antibody testing..and that was to kinda confirm TED

If I had to choose, I would choose Grave’s over TED. Hate them both…a lot!
Would rather repeat chemo and radiation, as i might have said before.

There is controversy and opposing opinions exist about everything about Graves’.

But my life now is relatively good, with TED aftermath being more of an issue than Graves.

[Mforsberg21]

#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.

[brondack]

#1183415

It really concerns me when someone says:

” I’m not going to rely on Drs and Insurance companies with their protocol bullitens to do what they think is best for me.”

I hope others that read any further information about your experience realize that people here are NOT doctors and probably haven’t received any medical training (some are nurses) and they are taking their own health and lives in their hands if the opt to go the same route as you and ignore their doctors’ advice.

Just my thoughts on the subject.

[Mforsberg21]

#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]

#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…

[scanders]

#1183418

Sounds as if things are moving in the right direction! Great news about the pressure coming down.

[Raspberry]

#1183419

Hi Mforsberg21, I too am someone that has taken on educating myself to the nth degree about this so I can have influence in my treatment. I think it is fair to say that a shockingly large number of doctors do not understand Graves well enough and are not giving the right treatment to their patients. That is not to say that there aren’t good doctors out there, but it is very much a caveat emptor situation.

First the disclaimers, I’m not a doctor – I’m a self educated patient, but here’s what I feel I’ve learned:

The key problem in treating Graves’ is that the TSH is not a reliable indicator of what the dosage should be – of ATD or replacement both. Doctors finally seem to have a consensus that the TSH for the first couple of months after onset will be falsely suppressed. But after that most make dosing decisions based off of it as if it were a normally working TSH of someone without Graves’. If they used only FT4 and FT3 a lot of misery would be avoided. But many don’t – This is where the trouble comes in. If there is a process in Graves’ which makes the TSH unreliable for those first couple of months why do we assume that that process completely stops after that time?

I wish you well and hope that you can find your way through this medical maze. I’d say too remember it is not always the worst case scenario – some people do find good doctors and get good outcomes and I hope that you are one of them.

[Author]

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