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in reply to: TT and eye disease symptoms #1184597
I had 12 weeks of weekly IV steroids. Seemed to work until treatment over and within a week or two off steroids, eye disease progressed again with more retraction, irritation and worsening double vision. I had the TT at week 6 of the steroids. I then had two weeks of daily orbital radiation and oral steroids. The lid retraction improved a lot after the first week and the double vision stopped progressing a few weeks after radiation over. The rest of it, like irritation and pain, stopped a couple months later, about six months after the TT, and the eye disease was pretty much burned out. Waited six months, during which there were no changes to be sure it was stable, and corrective surgeries could begin. I just finshed the last of five surgeries n each eye and I was diagnosed with Graves and the eye disease began three years ago this June. I had some delays between surgeries due to complications and travel issues. My time between start of eye disease and burnout was about a year, 18 months if you include the extra six mnths to be sure no further changes would occur.
Couple of studies. The first shows diplopia reduction pre decompression, which is what I had. Not sure if radiation can be done post muscle surgery though. The second shows radiation combined with steroids.
I have not had Rituximab. I know it was studied at the University of Michigan, actually by the surgeon who did my decompressions. In looking through the literature, reviews seem to be mixed, from not helpful to maybe helpful.
Here are two studies. Seems to be no consensus.
http://www.ncbi.nlm.nih.gov/pubmed/25025391
http://www.ncbi.nlm.nih.gov/pubmed/25343233
I personally had intravenous steroids, oral steroids and orbital radiation, in addition to thyroidectomy. I found the orbital radiation stopped the progression of the double vision and the inflammation died down within six months of the TT. I was not too impressed with the steroids.
in reply to: Newly Diagnosed and not doing well #1184643Thyroid levels do affect mood so you will hopefully feel better as your levels stabilize. Very few, if any, people do not have something wrong with them. Allergies, asthma, PMS, endometriosis, diabetes, migraines, joint pain, back pain, hypertension, anxiety, depression, obesity, addictions, skin diseases, cancer, seizures, fibromyalgia, sleep apnea, celiac disease, MS, glaucoma, etc. In my case, taking Synthroid once a day is easier than the migraines I have had my whole life. Yes, it is hard to get an unexpected diagnosis, no question, but you will get things adjusted and get on with your normal life.
in reply to: Question from an old-timer #1184662If you want or need to stay on calcium, you could just increase your levothyroxine to accommodate that. My daughter in law, who is hypothyroid not Graves, hates waiting an hour for her coffee so she just increased her dose and drinks coffee right away. Coffee can cut absorption by 20 percent. Maybe try 12 hours, not 6 on the calcium. I do better with real food so I get the plain yogurt that is 70% of your daily calcium. Tastes awful but supplements for some reason never work out for me.
in reply to: Question from an old-timer #1184660My TSH varies between a little less than 1 and a little more than 2. Prior to Graves, it would be 1.5 one year and 2.5 the next, going up and down within a narrow range. I have friends who have had TT’s for thyroid cancer and it isnt unusual for them to adjust their replacement hormone after getting their yearly labs, up or down, slightly. We dont exist in a vacuum, things in our bodies change a bit all the time. We get older, our estrogen levels change, we have stress, illnesses, weight changes, activity changes, take different meds (like Prilosec, which interferes with absorption) etc., things that change our requirements for thyroid hormone. When my TSH was 2.2 this spring, up from 1.3, my endo wanted to change dose and I refused. Sure enough, next lab was 1.1 and upping my synthroid would not have been a good thing! You are supposed to be between 0.5 and 2.0 on thyroid replacement so maybe a slight increase would be of benefit if you think you are feeling off. I try to pick only objective things, like if I stop growing hair on my legs, I can guarantee my TSH is on the high side, like 4. Things I cannot measure objectively, like mood, or muscle aches, I ignore, I had issues with those things a few times before Graves, whereas I never stopped having to shave my legs before Graves. If my pulse after exercise is up from my normal rate, i would count that as hyper. Feeling hot, cold, tired, mean, headaches, all those are more subjective and could be caused by a lot of other things. Watch things that interefere with absorption, like proton pump inhibitors, or falsely change your labs, like estrogen and prednisone. All in all,the variation is usually small and it is not like you are going to swing hugely hyper or hypo.
My Methimazole dose was increased to get my FT4 into the low range, I believe even slightly below normal, in the six weeks prior to surgery. TSH was never going to get in the normal range so that was not considered.
in reply to: Reducing Graves’ Disease Antibodies? #1184649That seems wrong. I have never had antibodies checked, have had thyroidectomy and strabismus surgery. Antibodies usually return to low levels within a year of thyroidectomy, so maybe they are waiting for that. I know my eye disease burned out about six to eight months post TT. Antibodies were not checked, eyes just stopped changing. Once there is no change for six months, disease is usually considered burned out.
in reply to: Newly Diagnosed and not doing well #1184640I had a total thyroidectomy nearly three years ago and am so happy I did. No worries about thyroid cancer, thyroid storm, becoming way hyper or way hypo. Takes a bit to fine tune your Synthroid, but no big swings in your labs and the symptoms associated with those swings go away. Lots of people out there with no thyroid, think Brooke Burke Charvet or Sofia Vergara, two famous women who are doing fine. Does not matter if you have thyroid removed because of cancer or Graves, treatment and results are the same. Graves antibodies attack thyroid and eye muscles. Once thyroid removed, cannot attack thyroid or affect hormone replacement, and seems to be some research suggesting less likely to attack eyes if all of thyroid gone. I had surgery on Friday, was out shopping on Monday. So plan on a week off school and then some months of feeling slightly off until you get your replacement hormones just right, but it should be close right away. All the bad symptoms stopped immediately post surgery. I feel totally normal, exactly as I did before Graves diagnosis. You take a pill every morning, get labs once a year, that is pretty much it.
in reply to: Risks of Strabismus Surgery #1184611Strabismus surgery involves reattaching the muscles outside your actual eyeball, unlike cataract surgery, for example, which is inside the eye. In browsing Pubmed, I could not even find visual risks associated with this surgery, but as with any surgery, there is a risk of infection, anesthesia issues, etc. Some retinal surgeries used to involve cutting and reattaching muscles to put a band around the eye, and this was easily done by a nonstrabismus surgeon. They do strabismus surgery on little kids. In fact, strabismus surgery is done in adults by a pediatric ophthalmologist. I had this surgery in May. No ill effects whatsoever. I now see single except to the far sides. The biggest risk I think is not getting it perfect the first time and having to reoperate in a few months. This happens less than 30 percent of the time and the reoperations are nearly all successful. Of the five surgeries I have had on both eyes, this was the one that went the best. Pick a surgeon with experience with adult Graves patients as our muscles are fibrosed snd thicker than normal.
in reply to: Cognitive issues 1.5 years post TT #1184608I had TT nearly three years ago and I feel totally normal, the same as I felt before Graves. I dose levothyroxine totally by TSH. Latest guidelines in patients without a thyroid is to keep TSH between 0.5 and 2.0 where the normal range is between 0.2 and 4.5. I get FT4 but ignore it. It stays between mid and top range. If you have your labs 2 hours after taking levothyroxine, your FT4 will be at highest value, later in day at lowest. It varies with when you take your dose as you arent making any hormone yourself. The few times I have had FT3 done, only before undergoing anesthesia for eye surgeries, it is in the low part of the range. I ignore the free Ts as long as they are somewhere inside the normal range. My TSH will vary between 1 and 2, but so would this value vary if you had a totally normal thyroid. Your body obviously requires more or less depending on many things, like time of year, illness, etc. levothyroxine has a long half life and can cover these changes. Be aware that things like Nexium, proton pump inhibitors, can affect absorption as can coffee.
As for the autoimmne aspect, anti thyroid antibodies attack your thyroid or your eye muscles, rarely skin. If they are not actively attacking these organs, they are just circulating in your blood like the antibodies you have for polio, influenza, whooping cough, etc. They do not attack synthroid, skeletal muscles, brain, liver, kidney, etc. They are anti Thyroid. Any symptoms you have are either from too much or too little replacement hormone or totally unrelated to Graves.
Once your levels are in the correct range, it takes two months or so for body to adjust and then you are good to go. You definitely can feel normal on thyroid replacement. Thyroid replacement is thyrod replacement, whether you have Graves, thyroid cancer or just a nonfunctioning thyroid. Hope this helps.in reply to: TT and eye disease symptoms #1184581Subtotal thyroidectomies leave tissue that can cause problems down the road. These were commonly done in the past. Shirley, did you have subtotal? RAI can trigger the eye disease, maybe because it takes months for the thyroid to die, and even then, remnants can remain to trigger antbodies later. So if all the thyroid tissue is not removed, it can be attacked again, and this may be what triggers the eyes. This is why there is some rationale to removing as much of the thyroid as possible surgically, then going back and irradiating to destroy any microscopic remnants, much like they would do if you had thyroid cancer. Who knows, they may come up with something different next week!
Total Thyroid Ablation in Graves Orbitopathy
in reply to: TT and eye disease symptoms #1184578Here is just one study, there are lots more.
The Effect of Early Thyroidectomy on the Course of Active Graves’ Orbitopathy (GO): A Retrospective Case Study. – PubMed – NCBIhttp://www.ncbi.nlm.nih.gov/pubmed/27351809
Thyroidectomy shortens the course of the eye disease. Antibodies that affect the eyes decrease in the year following TT. There is another study out of the Univ of Michigan noting TT and statins may prevent the eye disease. Methimazole does not have this effect and RAI can worsen things.
In my case, I had TT about 6 months after the start of the eye disease. My eye disease burned out (stopped progressing) 8 months after TT. This is much shorter than the average of 2 to 5 years for burnout.
There are more and more studies coming out, some even recommending radiation after TT to be sure all the thyroid is destroyed.
in reply to: I hate Graves Disease #1184569Sandy40, just my opinion, but if I had all those problems, thyroid would be gone! Post surgical complications, for any surgery, can be caused by many things, including general anesthesia. The eye issues run their own course, but studies have shown the antibodies that attack your eyes go down after thyroidectomy, usually within a year. While the eye disease stops, your eyes do not usually return to normal and surgical fixes are necessary. Surgeon will be sure you are on enough antithyroid meds to be hypo at time of surgery. Synthroid is pretty easy to dose, beginning dose by weight, adjusted thereafter. Remember you would not have a thyroid putting out too much or too little hormone messing up your dosage like you do on antithyrod drugs. No supplement or diet will fix this. Sometimes it may seem that way as the disease waxes and wanes, if you try some supplement and the disease coincidentally hits a plateau, it is easy to think there is a causal relationship. I admit I wasted some precious time at the beginning hoping for a magic cure, we all do. Your best bet is expert medical care.
in reply to: I hate Graves Disease #1184565AZGravesGuy is right. Not a lot of post thyroidectomy people on the boards because they have moved on with their lives. I had a total thyroidectomy, I feel totally normal. It hastened the burnout phase of my eye disease as an added benefit. Best decision I ever made.
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