[Liz1967]

in reply to: thyroidectomy: what is the rationale and your experience? #1184560

I had a total thyroidectomy after six months on methimazole. Best decision I ever made.

A good surgeon pretty much knows where to start you on levothyroxine. It is so much easier to regulate because there is no thyroid pumping out too little or too much hormone with no rhyme or reason. It isnt rocket science. If your levels are hypo, you take more levo, if hyper you take less and antibodies do not effect levothyroxine! I go by my TSH only and I feel totally normal. Once you find your best dose, which for me happened in six months or so, you pretty much stay there. Nearly three years postop, I get labs yearly.

My eyes started after two weeks on methimazole. Studies have shown total thyroidectomy has a positive effect on antibodies and the eye disease. I found this to be true as the eye disease burned out within 6-8 months after TT.

Prior to my TT, I was made slightly hypo on methimazole and was given some kind of iodine solution ten days prior to make the thyroid less vascular. They just dont want you hyper to risk thyroid storm.

I had surgery on Friday about 11a.m. Surgery took an hour or so. I went home that afternoon once they got my labs with calcium levels. The next day, I was tired mainly from the general anesthesia. No sore throat, hoarseness, or really any pain. Incision was glued shut on outside and not bothersome. On Monday, a friend came over to keep me company and we decided to go shopping! I started levothyroxine 4 days after surgery. My initial dose was 100 micrograms and I am maintained now on 88, so you can see how close I was dose wise right from the start.

I had pretty severe eye problems but if I did not have TED, I would forget I even have Graves. Take this little pill every morning, dont eat for an hour or take calcium for 4 hours, and I feel exactly as I felt prior to the Graves diagnosis. I may have some level of antibodies, who knows or cares, because I have no thyroid for them to attack and they are evidently done attacking the eyes! They are no more important than the antibodies I have for polio or whooping cough or tetanus. Levothyroxine is chemically identical to what your body makes. It is not a foreign drug. It has a really long half life so levels dont fluctuate a lot. I also know I will never have thyroid storm, or thyroid cancer or the side effects from methimazole. I dont have to spend any time worrying about labs or doing any crazy dietary things.

If you opt for surgery, choose a surgeon who does about three a week. My surgery was so easy, easier by far than any of the eye surgeries, because I had a great surgeon. It helps if they do thyroid cancer thyroidectomies, because you want to be sure all of the thyroid is removed. I had no need for calcium replacement and no hoarseness and my incision is invisible.

I feel like the TT cheerleader. If I had to mess around with antithyroid drugs and crazy labs and feeling bad while all the eye problems were going on, I would have lost it.

Hope this helps.

[Liz1967]

in reply to: 3 year old with graves #1177615

Massive plasmacytosis with severe marrow suppression induced by methimazole in Graves’ disease patients: case report and literature review. – PubMed – NCBI

http://www.ncbi.nlm.nih.gov/pubmed/25419407

Just one study. Methimazole is not a totally innocuous drug. Agranulocytosis is a bone marrow problem that is a known side effect of antithyroid drugs.

[Liz1967]

in reply to: GD with TED #1184527

My eye disease burned out after a year, but the wait was mainly due to complications from the orbital decompressions. I had some nerve damage causing worse double vision. I had to wait months as the nerves healed, the double vision improved and finally stabilized. You never want to do surgery in this disease while things are changing, either from active disease or postoperative complications. That is part of the reason finding the right doctor is so vital. I actually went to Kellogg Eye Center at the University of Michigan as they specialize in research and treatment of Graves. It was worth the five hour drive. If you are near St. Louis, you might be able to find expert care like at Barnes through the University.

[Liz1967]

in reply to: GD with TED #1184521

The double vision is hard to tolerate but eventually the eye disease stops and there are surgeries to improve things. I had double vision for nearly three years and just had muscle surgery that has fixed the double vision in straight ahead and reading gaze, will always be double to the sides. Do you still have a thyroid? You said it stopped working but not sure if you had surgery or radiation to the thyroid. Be sure you have ophthalmologists familiar with Graves. I saw a neuroophthalmologist, strabismus surgeon and oculoplastic surgeon in addition to general ophthalmologist and have had a variety of surgeries, steroids and radiation. As far as the tests, I had a thyroidectomy so I only pay attention to my TSH, which keeps me at an optimal Synthroid dose. Without a thyroid, you can never be hyperthyroid unless you overdose on Synthroid! With a thyroid, the FT4 becomes important as the TSH is often so low it is not detectable. Best advice is find most experienced doctors you can. This is a difficult and perplexing disease and the eye component is ever more poorly understood.

[Liz1967]

in reply to: On Week 12 and very discouraged #1184492

If you cant find a neuroophthalmologist, an oculoplastic surgeon will work too. They can do visual field testing as well as order orbital CT scans to check size of muscles. I actually started there, seeing a neuro after deciding on steroid infusions. The oculoplastic surgeon is well versed on Graves as they do the decompressions and lid repairs for Graves, as well as punctal cautery or plugs, which work very well for dryness.

[Liz1967]

in reply to: Is it normal to alternate dosage like this? #1184503

Synthroid has a very long half life, about 7 days, so dosage can be split easily without any effect as it not totally gone until about 5 weeks. Methimazole, however, has a half life of 5-6 hours, which means it is gone from your body in about 30 hours maximum. When dosing synthroid, you can take the total weekly dose, no matter how it is split up, divide by 7 and that is pretty much your steady dose. I am not sure how steady values would be with a drug having a such a short half life. Using 28 days as your ” month”, the first dose of 14 odd days at 15 and 14 even days at 10 gives you a monthly drug total of 350 or 12.5 per day average. At 15 on weekdays (20 days) and 20 on weekends (8 days), monthly total is 460 or 16.4 per day average. At 20 on weekdays (20 days) and 15 on weekends (8 days), monthly total is 520 or 18.5 per day. As you can see, your average dose is rising. Again, methimazole has a half life slightly longer than Tylenol (4 hour half life) so I dont know how changing doses would affect things or even if an average dose really means anything, but at least if you average you can tell how much you are increasing your dose. I was on methimazole only about 6 months so I dont really have much experience with it.

[Liz1967]

in reply to: On Week 12 and very discouraged #1184487

I agree with Ellen about seeing an ophthalmologist, sooner rather than later. Weight issues, while annoying, usually become manageable as your thyroid hormone levels reach normal values. The eye disease, however, proceeds on its own course for the most part, with some minor symptoms like lid puffiness or dry eye being somewhat influenced by hormone levels. Protrusion and double vision need to be evaluated by an ophthalmologist, to check for any pressure on your optic nerve as well as obtaining baseline values to monitor progression. There are palliative as well as therapeutic treatments for the eye disease, but some need to be started early in its course. Good luck!

[Liz1967]

in reply to: Newly diagnosed and confused #1184470

In considering your options, it isnt a bad idea to meet with an experienced thyroid surgeon and a radiologist if possible in addition to your endo before you choose. That way you get a true picture of the risks and benefits of each treatment course. I did a lot of research and spoke to all three before I opted for thyroidectomy. I was on methimazole for a few months while considering options and to get labs in range prior to surgery to avoid thyroid storm.

[Liz1967]

in reply to: Just diagnosed and new to Methimazole and scared #1184457

While my numbers were usually within range on methimazole, I chose total thyroidectomy for several reasons, including the toxicity of the drug itself, the low chance of remission in people also having the eye disease, the better chance of burning out of the eye disease after thyroidectomy, and the ups and downs and frequent labs on antithyroid meds, in addition to the slightly higher risk of thyroid cancer for Graves patients. I felt back to normal within a few months of thyroidectomy, Synthroid is easy to dose, my labs remain normal and I pretty much forget I have Graves, except for the eye disease reconstructive surgeries! With no thyroid, the antithyroid antibodies have nothing really to attack, since my eye disease has burned out, and no mechanism by which to make me feel bad, they dont attack Synthroid! This was just my choice, I was done with feeling off and having Graves affect my life so much. It did halt the progression of the eye disease too. Lots of people remain on antthyroid drugs for years and years, some go into temporary or permanent remssion, and some choose radioactive iodine. Explore your options. It is nice there are options at least.

[Liz1967]

in reply to: Just diagnosed and new to Methimazole and scared #1184455

I was only on methimazole for about six months, after which I had a thyroidectomy, but lots of people on this board are so you should be getting good advice from them soon. It is not uncommon to go out of remission. You should feel better once they get your dose adjusted and things get under control. You are not alone on relapsing. I think only about fifty percent of people achieve remission at all and lots of those relapse. Hope you feel better soon.

[Liz1967]

in reply to: What meds in conjunction with IV steroids? And tests? #1184450

No meds. Eye pressure not a problem, not a steroid responder. No tests prior or after, no preexisting diseases except Graves. No side effects, not even insomnia or weight gain, which can occur with steroids. I have inhalant allergies, so I always feel great on steroids!

[Liz1967]

in reply to: Full thyroid removal after five years with TED? #1184443

Not sure why you are on thyroid hormone when you still have a thyroid? I had a thyroidectomy and orbital radiation with steroids. My eye disease burned out within about six months after total thyroidectomy. I waited another eight months to be sure there were no changes. At that point, I had my first eye surgery, bilateral orbital decompressions. I am awaiting my last reconstructive eye surgery, repeat lid surgery. I feel totally normal without a thyroid. As my eye disease lasted only a year before burning out, and that was a very long year, I have to credit the TT for that as TED is usually active for a lot longer. My TSH stays around 1.6 on 88 mg levothyroxine.

[Liz1967]

in reply to: Graves disease- can’t find right dosing for methimazole #1184435

My eye disease began very shortly after starting methimazole and progressed rapidly to optic neuropathy, proptosis, double vision, lid retraction, etc in six months. I then had thyroidectomy, steroids and orbital radiation and the eye disease slightly regressed and burned out six to eight months after thyroid removal. Antibodies usually decrease within a year of thyroidectomy, methimazole does not have that effect. The eye disease progresses at its own rate. If you go the thyroidectomy route, be sure to find a surgeon that does a lot of them, like three a week.

[Liz1967]

in reply to: Third relapse #1183509

I quickly got tired of the ups and downs on methimazole and I never felt right. With your thyroid gone, if you are a bit hypo, you take more synthroid, a bit hyper, take less until you find the perfect dose, which usually takes less than a year, sometimes right away. It isnt rocket science. With methimazole, you might find the right dose and then your thyroid, which is under attack, suddenly chugs out more hormone and it swings way hyper. Then it stops putting out excess hormone, and you are hypo. With replacement hormone, you arent off by much, matter of fine tuning, and once you find the perfect dose, you pretty much stay there and nothing suddenly throws it all off. No worries about thyroid storm, liver damage, vasculitis, agranulocytosis, thyroid cancer, etc. I feel totally normal, back to how I felt before my Graves diagnosis. Synthroid has such a long half life, there is no variation. My TSH stays about 1.6, I remember not to eat an hour after taking synthroid and no calcium for 4 hours. Blood checked every three to six months at first, then yearly. If I didnt have the eye disease, I would forget I even have Graves. Lots of people are hypothyroid without an autoimmune disease and then there are the thyroid cancer people, all taking thyroid replacement without issues. Levothyroxine is chemically identical to what your body makes, like estrogen or insulin. Total thyroidectomy worked out really well for me.
Is WCC your white cell count? That doesnt reflect anemia, your red cell count would. Agranulocytosis has a low white count. Good you have someone keeping an eye on that.

[Liz1967]

in reply to: can’t decide- IV steroids or oral #1184428

Shirley, you are making me work today! Everyones disease course is so different. To complicate matters, medical opinion keeps changing. Here is a study directly comparing infusion alone vs radiation and pulse steroids. Optic neuropathy was mentioned as occurring in the steroid alone group.

Efficacy of combined orbital radiation and systemic steroids in the management of Graves’ orbitopathy. – PubMed – NCBI

http://www.ncbi.nlm.nih.gov/pubmed/26876240

Confusing isnt it. When in doubt, pick a great doc from a center that sees lots of Graves eye and trust his experience! Even then you can get differing opinions.

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