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in reply to: Third relapse #1183506
Now they are talking about radiation and steroids following TT for the best outcome of TED.
Outcome of Graves’ orbitopathy after total thyroid ablation and glucocorticoid treatment: follow-up of a randomized clinical trial.
in reply to: can’t decide- IV steroids or oral #1184426I had to go back and look at my records and I actually had 3 months, not six weeks, of weekly SoluMedrol infusions. It was 6 weekly infusions, thyroidectomy, then 6 more weeks of infusions. How quickly one forgets! The dose was 250 mg per infusion. I have heard of double that dose being given. Unfortunately, my doctor was not real familiar with this therapy which is why I traveled out of state for all future therapies!
in reply to: Third relapse #1183504My TT was very quick and easy. Not scary. My only worry is that there might be a tiny thyroid remnant left. No indication of that, but I want it all gone! I feel totally normal. No regrets about not having to worry about thyroid levels.
in reply to: can’t decide- IV steroids or oral #1184424The IV steroids helped with the irritation and kept retraction the same. Did not seem to do much for double vision. Then when stopped, the irritation returned, the retraction got worse and diplopia kept progressing. There is no taper with the infusions and tapering the oral steroids prevented rebound irritation. The oral steroids made the irritation less right away. I think the stopped progression of the diplopia as well as the improvement in retraction was from the radiation. The proptosis did not get better on either treatment. Some docs favor the infusions, the docs I saw at a major center liked the oral steroids. I had no physical side effects from either. I felt fine throughout. I did have some increased cataract formation from either the steroids or the radiation, but as I am 67, I was getting there anyway. The cataract surgery was easy and I didnt mind as it freed me from glasses as the dryness prevented my wearing contacts. I had a double dose of steroids, the high dose infusions followed by the lower dose several months taper of oral steroids. One course should be it, and if I were to choose one, it would be the radiation/oral steroid route as you get the benefits of the radiation and the steroids.
in reply to: can’t decide- IV steroids or oral #1184421I have had IV steroids (eight weekly infusions) as well as oral steroids with radiotherapy. I have tiny veins, so had to have a PICC line placed for the infusions, which were done at home by a visiting nurse. I had optic neuropathy and the infusions fixed that; however, when stopped, my eye irritation, retraction and diplopia increased. At that point, I went on oral steroids at a pretty high dose, like 80 mg, for a week and then began the series of 12 ocular radiation treatments. The oral steroids were continued for several months, tapering until off of them. The radiation stopped the diplopia progression and lowered the retracted eyelid. The steroids made my eyes much more comfortable, although still with chemosis and irritation. I had no ill effects from the steroids at all, either infused or oral, or the radiation. I had a total thyroidectomy in the middle of the infusions, which of course lowers antibodies over six months or so. All in all, my eye disease burned out soon after these therapies and I was able to start corrective surgeries.
If I had it to do over, I would have the thyroidectomy sooner and radiation with oral steroids right after if necessary. Radiation is also used for optic neuropathy and it is my understanding it is most effective in first six months of eye disease as far as its effect on the eye muscles. I had it about month eight. While I had no side effects from the steroid infusions, I dont know if I would go that route again,.
Hope this helps.in reply to: Treatment after Agranulocytosis #1184409Here are reports of agranulocytosis after discontinuing mmi, but they dont indicate dose.
I tend to be cautious with any drugs. Look at the side effects of proton pump inhibitors, like Nexium, that are over the counter and now linked to dementia, heart disease and kidney problems.
http://www.ncbi.nlm.nih.gov/pubmed/25120607
Extrathyroidal actions of antithyroid thionamides. – PubMed – NCBIhttp://www.ncbi.nlm.nih.gov/pubmed/11869823
A patient with agranulocytosis following the discontinuation of methimazole treatment for 4 months: A case report.
http://www.ncbi.nlm.nih.gov/pubmed/26339512
Development of Agranulocytosis after Discontinuation of Methimazole: An Unusual Case. – PubMed – NCBI
Like anything, you have to weigh risk versus benefit in deciding best course for you.
in reply to: Treatment after Agranulocytosis #1184407Agranulocytosis does occur later in ATD treatment and at low doses. This article notes a woman on therapy for eleven years. Rare, but does happen.
http://www.ncbi.nlm.nih.gov/pubmed/22297058
I opted for thyroidectomy. Current thinking is that it may prevent the eye disease, or at least reduce the risk, if all the thyroid is removed. Thyroid replacement hormone, or Synthroid, is chemically identical to what your body makes. Antithyroid drugs are not made in your body and do cause side effects.in reply to: My husbands behavior is irrational after TT #1184400So sorry to hear that. Maybe after he moves out, he will realize you have nothing to do with how he is feeling. If his issue is thyroid hormone imbalance, he will eventually get balanced. Hang in there.
in reply to: My husbands behavior is irrational after TT #1184397Everyone is entitled to their own medical records, including labs. If this is his endocrinologist, your husband can ask his internist or even his surgeon to request his labs. You can bet they will send them off to another doc without issue. That should not be necessary, your husband should be given the labs. I would have no hesitation switching docs. My surgeon managed my labs and dose for the first six months postop. A nurse practitioner does that now. My endo was a waste of time, an internist can manage thyroid replacement. It isnt rocket science. If you are low, you take more Synthroid, if high you take less. Takes awhile for it to stabilize but a good doc will get you close to optimum pretty quickly. That being said, blood work usually isnt repeated at that short an interval unless there is a problem.
in reply to: Synthroid resistant hyperthyroidism? #1184380Kimberly, it was interesting to hear about your meeting. I also have been hearing more about TT followed by RAI. In fact, I asked my thyroidectomy surgeon about it. He assured me he got it all, just as he does for his thyroid cancer patients, but still wonder about “mop up” type RAI. As these are antithyroid antibodies, makes sense to get rid of it all.
in reply to: Synthroid resistant hyperthyroidism? #1184378Unfortunately, TED can recur years after it burned out. Incidence only about 5%, but it happens. If you still have remaining thyroid, both the Graves hyperthyroid and the TED can recur. Actually, the TED can recur even without a thyroid, but the hyperthyroid cannot unless thyroid remnants were left. If you have not seen an ophthalmologist, you need to do so. Eye measurements become really important even if there is no treatment to be done. Maybe a thyroid ultrasound would be of benefit, an easy procedure done during an office visit, usually with an ENT doc, to see if there is any thyroid tissue present. Anyway, maybe an ENT doc would be of help at this point.
in reply to: Synthroid resistant hyperthyroidism? #1184375Here is an article citing recurrence of hyperthyroidism years after RAI, in one case 22 years later. It is an older reference, 1995, but they concluded incomplete destruction of the thyroid as the cause.
http://www.ncbi.nlm.nih.gov/pubmed/15251585
As Kimberly said, years ago they found benefit in saving even part of a diseased thyroid. I think that thinking has changed over the years.
Hope this helps.in reply to: Just curious about RAI #1177975I am not finding any info like that. Find it hard to believe that they would recommend RAI if it increased breast cancer risk by 53%. I did find this at the American Cancer Society site describing RAI for thyroid cancer. Seems cancer risk very low but possible for leukemia. http://www.cancer.org/cancer/thyroidcancer/detailedguide/thyroid-cancer-treating-radioactive-iodine
Please post reference. I did not have RAI, however.in reply to: Proptosis recurrence 3 years after OD #1184356Best of luck with your surgery and hoping you have a quick recovery. Massachusetts Eye and Ear is a great place to be. Let us know how it goes.
in reply to: Proptosis recurrence 3 years after OD #1184351Let us know how your appointment goes on Tuesday.
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