-
AuthorPosts
-
Hello there, I am a new poster and am so glad to have found this site!
Here’s a summary of my situation. I was diagnosed with hyperthyroidism and Graves in 1997, immediately had ablation, and have been hypothyroid (and on replacement hormone) ever since. At that time my eyes were checked and there was no symptoms of TED. My father had Graves and only TED, and I watched him go through surgery, so I was very nervous about developing TED, but never did. Until now. I’ve had double vision since the beginning of the year, took about 6 months to get it properly diagnosed (mostly my fault, as I’ve not had any issues with my Graves for 15+ years it didn’t even occur to me to suggest it), and another 3 months for me to figure out what I wanted to do, and to arrange my life to make it possible.
My endocrinologist has suggested that I do a 12-week protocol of steroids via infusion and I start in two weeks. I’ve looked around on the forum and haven’t seen much about infusion treatment for TED (apologies if I’m just not too adept yet at searching!). I would really like to hear from others who have taken this route of treatment, their experiences, any suggestions for managing side effects, really any information. Thank you!
Megan
Hello and welcome – Hopefully, others will chime in with their experiences, but in the meantime, here is some info from the Int’l Thyroid Eye Disease Society:
(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
http://thyroideyedisease.org/medical-therapy/
The IV steroid approach is believed to be more effective and to have fewer side effects, although the site above has a couple of cautions regarding monitoring and dosing.
Hope this is helpful!
I had a 12 week course of steroid infusion for TED. I had double vision and optic neuropathy. It fixed the neuropathy within the first two weeks but sadly had no effect on double vision or irritation. Six weeks into the infusions, I had a total thyroidectomy. With TED, not a bad idea to have steroid coverage before and after thyroid removal. I had no side effects from the infusions, although I had to have a line put in as I have crummy veins! A home health nurse did the infusions. Within two weeks of discontinuance of the steroids, I got more lid retraction on one side. I did go on to try orbital radiation, which did reverse most of the retraction but it really should be done in first six months of disease if you hope to reverse diplopia and I was at eight months. The double vision progressed a little but everything basically stopped progressing by six months after thyroidectomy. The infusions did not cause any weight gain or the other side effects you hear about with steroids and it did the job to cure my early optic neuropathy. Hope this helps.
I have reluctantly done the steroid infusions 2 times for optic nerve compression and loss of vision and survived! Once for the full 12 week cycle in 2012 and recently in the spring for 6 weeks. In 2012, for my left eye, it was a slow and steady success! Saved my vision and mostly resolved the double vision issues. I was left with a very manageable degree of double vision and wore prism glasses. I was thankful to have avoided needing surgeries and got on with my mostly back to normal life. The more recent infusions were for my right eye and I ended up needing an orbital decompression this past summer. The steroids were not helping enough with the optic nerve compression and vision loss. The OD saved the vision in my right eye, thankfully. I now have severe double vision -not unexpected after OD- and plan to have eye muscle surgery in January. Who knows why the steroids did not work as well the 2nd time?
I was diagnosed with Graves in 2010 because of my eye problems. Had my thyroid out that same year. I found the infusions tolerable, but it definitely made it difficult to sleep well and stay calm. I got smarter and asked for a sleep aid to be prescribed for the 2nd round of steroids. I would take take it the first 2 or 3 nights after the infusion and then tried to manage with out until the next round. I did find the IV infusions easier to tolerate than taking oral steroids. I did gain some weight both times. It took me about a year to get back to normal after the 2012 infusions. I am only a few months out from the recent steroids so I am still working on shedding the pounds. This is a frustrating and trying disease. I am soooo sorry that you are dealing with this seemingly out of the blue. I was really caught off guard when my right eye started me on my 2nd bout with TED. I wish you all good luck with the treatments and pray that it resolves your TED.Thank you Kimberly, Liz and Laura for the information! It is all very helpful. I will be asking for a sleep aid as well. I am already having trouble sleeping due to other life issues, and last night after my first infusion was not a good night, so hopefully this helps. This disease is trying, but I feel lucky to have this community of support! Thanks for the good wishes and I wish you all the best as well!
The Kellog Eye Institute in Michigan has reported that having a thyroidectomy may help to prevent TED. It was mentioned in a video – does anyone know if this is being recommended by the docs?
To Jeff. I am familiar with that Eye Institute, met a lot of those folks . Good people. I had not heard this. However, I am a counterpoint to this statement. I had a thyroidectomy in the late 1950’s, and developed TED in (I think 2004)
I will check that out, was it just the opinion of an end there, or was it a controlled, evidenced-based study with a large population and sample? I suggest you pursue this further.
ShirleyTo fishstix. ( love that name!)i.e. Megan! Welcome to the world we don’t want, but here we are!!
From my experience, here are some suggestions. My endo sent me to a near–ophthalmologist. I recommend this. As you may have read above to Jeff, there was a long time between Graves’s and TED for me. About 50 years!!!!
My TED arrived with a vengeance, with double vision in every direction except downward gaze to the floor with one of my eyes. Double vision is life changing , and not in a good way. I did have a course of IV steroids, as described by Laura, and the rational was to save my vision in my eyes. There was so much swelling, that the pressure on my optic nerve (optic neuropathy) if allowed to continue, would result in permanent blindness. So..the reason for the IV steroids was to “buy time,” keep my vision safe, until I could have an orbital decompression, which I did have. It did save my vision. For sure. My time is limited right now, but wanted to give a brief response. Steroids definitely have their pros and cons, but in this situation, very warranted.
ShirleyHi Jeff – Yes, I am familiar with that research, which just came out this year. I don’t think that this news is changing treatment recommendations just yet – although it is certainly one more important factor to consider in the list of risks/benefits for all three treatment options.
Also, as Shirley noted, keep in mind that there is no *guarantee* that patients who undergo surgery will never have TED – it’ just that the UM Kellogg research indicated a lower overall risk of getting TED for those undergoing thyroidectomy.
Not sure where you are with your thinking, Jeff. But part of your thinking should be the pros and cons (and risks) of a thyroidectomy. I am glad you submitted this, it is a great discussion
PubMed searches the Medline database which gives you access to at the very least abstracts from all research done in US and abroad, often full articles. To access the search page, it is easiest just to Google Pubmed and that will take you there. The actual government website is ncbi.nlm.nih.gov, but unless you are familiar with it, it is hard to navigate to the search page. You just enter key terms, like “thyroid eye” or “Graves treatment”, and it will list all relevant research, going back to the sixties sometimes. The Kellogg research is there, of course. You can access also by author. Obviously, a lot is pretty technical but most of the conclusions are easily understandable to no medical people. Happy researching!
Thank you for all of the generous responses to the earlier question about surgery and TED…..for those of you who decided on the thyroidectomy would you please share what helped you make that decision. For example, does it come down to trying to manage the anti-thyroid medications, etc.
Jeff, I was diagnosed with Graves and started on methimazole. Two weeks later the TED started. It progressed rapidly. I have several doctors in my family and I worked in a teaching hospital for years. It was pretty easy for me to do research and consult specialists. Recent studies indicate that antibodies decrease within a year of total thyroidectomy. This is not the case with methimazole. The dangers of agranulocytosis, hepatic damage and vasculitis with methimazole use factored in. Levothyroxine is basically T4 which your body makes, therefore without the toxicity. While I may always have Graves, without a thyroid there is nothing for the antibodies to attack now that the eye disease has burned out. They are, after all, antithyroid antibodies. They don’t attack random organs like liver, kidney, spleen etc. pretty much eye muscles and thyroid. Lastly, levothyroxine is easy to dose. You can never be hyperthyroid unless you really overdose on synthroid so no thyroid storm. It takes a few months to get the perfect dose, but I felt well right away. I had the TT six months from the start of the eye disease, and it burned out about nine months after the TT. There is some evidence that thyroid cancer is slightly more common in Graves patients, I think 17% increased risk. My pathology was clear and one less worry about an already beleaguered thyroid. Lastly, I already had a long course ahead of me with corrective eye surgery. I wanted to spend no time worrying about labs and triggers and whatever, no roller coaster. Those were my decision making points. I chose a surgeon used to doing thyroid cancer surgery because I felt getting all of the thyroid out was my best bet. Years ago they did subtotal thyroidectomies which don’t work out as well. That is my story. I feel well, follow no special diets, get labs every six months and am facing my final eye surgery at one of the leading Graves eye centers in the country. I am very lucky to have had experts help me with my decisions. Good luck with whatever you choose.
Great post, Liz.
Jeff, some of my thinking is below.
Somewhere in the forum, I have described my thinking about my decision to have my thyroidectomy. The overriding thought was, that I wanted to get the show on the road asap. I figured if I did not have a thyroid, there was nothing to attack! But my thinking was way ahead of the standard of care for thyroid surgery, so I DID have a sub-total thyroidectomy. They left a little tiny bit on one side. This kept me happy and euthyroid for multiple decades.Sometimes I wonder if the surgeons of today, feel that a TT is easier, you have to be a bit less careful, and after the post op course, they are done with you. That ‘s what surgeons like. Rather than a patient returning to talk about symptoms and thyroid replacements, that is just not their interest or what they do. RAI was new then, and i wanted nothing to do with it. There was no information about having one if childbearing, and wanted more kid. I did all the ready of ATD (same drug they use today) and I wanted to get off that asap also. Back then, that was also the thinking of the medical community, for all the reasons Liz stated.
I have found that after my Synthroid dose was established, that I regained being a human again. Of course, the first renewal of being anything but a great roaring psychotic crazy person, was beginning on ATD.
I totally relate to all that you say about work, kids, friends and life in general. It is a total bummer in all aspects. The only thing that I can say, is that it gets better. For the surgery, you would need help for at least a week, and optimally partial help for next week or two..to do laundry, be helpful to your kids, get them places, grocery shop, and fix some meals.
Feel free to call, just send a PM, and will provide my phone #. I have done this before, it really is nice to talk to a real person.
Snelson, they have really improved on TT. Mine took 45 minutes, went home two hours later. Two days later, a friend came to help me out while my husband was at work, and we went shopping instead! I was totally back to normal in two days, and the first two post op days were mainly feeling tired, no sore throat, nausea, etc. Scar was tiny, glue came off quickly. My surgeon actually did my levothyroxine dosing first six months. Now my internist orders labs. Don’t really need endocrinologist for that.
Hi all – Just a couple of quick notes…
1. The one study that I’ve seen on antibodies showed a similar reduction in antibodies for both antithyroid meds and for surgery. For RAI, the antibodies spike for up to 6 months following the procedure.
2. Time in surgery for thyroidectomy can vary according to the complexity. I’ve known people who spent 4 hours in surgery.
3. The primary reason that total thyroidectomy is preferred over subtotal is the risk (one study put it at around 16%) of going hyperthyroid again. If this happens, doing a second surgery comes with a higher risk of complications. I’ve heard that subtotal is still routinely performed in poor countries where concerns over being able to get replacement hormone consistently trump the concerns over a hyper recurrence.
-
AuthorPosts
- You must be logged in to reply to this topic.