[Liz1967]

in reply to: Change in medication #1185581

I am not a doctor, nor would I suggest ignoring your physicians advice, but in reviewing the warnings on Cytomel, I see no absolute contraindications for elderly patients in the absence of heart disease.
https://www.rxlist.com/cytomel-drug.htm#indications
Has your TSH gone up since stopping the Cytomel, and if so, this should prompt an increase in your Synthroid dose.
I have never used Cytomel but keeping myTSH within a narrow range of 1 to 2 works best for me.

[Liz1967]

in reply to: Thyroidoctomy after RAI ?? #1185579

RAI can start the eye disease in some people. Yet sometimes the eye disease occurs after thyroidectomy, altho that is rare. Antibodies attack your thyroid gland and only attack eye muscles incidentally. The thyroid is the main target. RAI kills the functioning of the thyroid but the tissue is still there. So your ophthalmologist would be the one I would heed. Removing the main target of the antibodies, the thyroid tissue, may hasten burn out. Thyroid cancer patients have radiation after surgery as they cannot risk even a tiny bit of thyroid tissue remaining so this may be your doctors thinking. This is a mysterious disease in many ways. There are no really good options to stop or prevent the eye disease. All you can do is try to control the inflammation, speed up burnout if possible, and surgically fix the damage done to the eyes when it has burned out. Wish there were better options or at least more certainty. Ask your ophthalmologist to recommend a thyroid surgeon and set up an appointment to talk to him, see what he says. My endocrinologist did not recommend thyroidectomy, but my ophthalmologist did, as did the surgeon. Your case is different as you have had RAI but you have to trust your doc, he has access to latest studies.

[Liz1967]

in reply to: Thyroidoctomy after RAI ?? #1185577

You can have a thyroidectomy after RAI, and there is some suggestion of RAI after thyroidectomy. The object of both of these plans is to be sure all of the thyroid is totally removed, no remnants left. I had a thyroidectomy and it did cause the eye disease to burn out pretty rapidly but I also had intravenous and oral steroids as well as orbital radiation as my eye disease was severe, eventually requiring many eye surgeries to repair the damage. There are some studies showing benefit to rituximab. Bottom line, the eye disease seems to burn itself out after 18 months or so, and steroids, thyroid removal, etc do appear to hasten the process. Oral steroids are a great help in reducing the inflammation until it all stops progressing and removing your thyroid would eliminate any thyroid tissue remaining that could start chugging out hormone again. I understand how you feel, I have been there and it is terrifying. In the end, find the best oculoplastic surgeon you can as well as a pediatric ophthalmologist for the double vision. These docs can repair the damage done once the disease has stopped getting worse.

[Liz1967]

in reply to: After Thyroidectomy #1185572

I had a total thyroidectomy 6 months after Graves diagnosis (5 years ago). The eye disease began after two months on methimazole and I elected TT to try to stop progression. The surgery was easy and I immediately felt normal. My levothyroxine dose was pretty close right after surgery and has not changed much since then. The eye disease did burn out pretty rapidly post thyroid removal but a lot of damage had already occurred. I wish I had had the surgery even sooner than I did. I feel exactly as I did preGraves, except for the residual eye issues. I take one little pill every morning, wait an hour before eating and get my TSH checked every six months to a year by my internist. No worries about thyroid cancer or liver problems or thyroid storm or fluctuating and frequent labs. If you have Graves disease, your thyroid has been attacked and is diseased. You can do just fine without it.

[Liz1967]

in reply to: Graves’ Has Destroyed My Life #1185566

5 years post thyroidectomy, and two years post last of six eye surgeries on both eyes. Except for some remaining double vision, I am back to preGraves. That being said, I had some anxiety issues before Graves and I firmly believe a perfect storm of bad life events triggered Graves, as is true with many people. My anxiety issues were certainly not made better by the Graves diagnosis and the eye disease with the worries about thyroid levels, etc. No one likes to hear that anxiety can cause real physical symptoms, but it can and it does. I have IBS, migraines and GERD, all of which can make you miserable and I do not attribute those symptoms to Graves. I feel just like I did before Graves and I keep my TSH at a good level for me. So my “normal” does include nonGraves anxiety provoked vascular and enteric issues, issues that existed somewhat preGraves and can be made worse by worry. I really do not notice any symptoms caused by slight variations in my TSH but some people do. I really do forget about Graves most of the time. Look for other causes of your symptoms too so you dont miss another diagnosis.

[Liz1967]

in reply to: Nails #1185552

I did find this :
https://www.ncbi.nlm.nih.gov/pubmed/29780134
and this:
https://www.ncbi.nlm.nih.gov/pubmed/24498824
Seems can be related to hyper or hypo thyroid.

[Liz1967]

in reply to: Nails #1185551

i have had the same thing on my left big toenail since Graves began, even when on methimazole for the first 6 months so pretty sure not an effect of levothyroxine. I cannot really tie it to either hyper or hypo. My fingernails have always been brittle so that didnt change. I will say hair growth is negatively affected if my TSH wanders above 2. As ridiculous as it sounds, I cut the nail as short as possible, be sure there is enough room in the toe of my shoes that that nail does not catch and get pulled up by the shoe, and clean it out after bathing or soaking with an orange stick and put Vicks vaporub under the nail. This is totally unproven but somehow I manage to get the nail looking almost normal if I remember to do everything. I also try to smooth it out by a course emery board across the middle where it forms a hump. I wear toeless sandals all summer too. It has to be a fungal thing, but how it relates to thyroid levels is a mystery. The dry skin affects nail cuticle and putting vaseline just on cuticle helps mine a bit.

[Liz1967]

in reply to: Orbital Decompression #1185040

It is not as bad as you are anticipating. You might have two uncomfortable postop days. If you do not do it and your TED recurs, you run the risk of optic neuritis as you have no space to spare in your orbits. TED recurs more often than they previously thought. I have had one flareup three years after it was completely burned out. I was grateful that I had had the ODs because there was no pressure put on the nerve, just some irritation and worsening diplopia, all of which were resolved with a short course of high dose oral prednisone. It makes a huge difference in dryness and appearance. My life would be miserable if I had not had the orbital decompressions. I was 65 the first time I had general anesthesia for the thyroidectomy and I was scared, but it turned out to be no big deal. I have had it twice more, ODs and strabismus surgery, since then with no issues at all. You will be fine.

[Liz1967]

in reply to: Feels like PMS all the time #1185545

I have not heard of that nor can I find anything in the literature about it being a side effect of thyroid hormone replacement. It does happen with antidepressants and of course any estrogen replacement (?some heart meds too) and I did read something about a fatty acid imbalance but unsure if that would affect you post menopause. I am also postmenopausal and have been on levothyroxine over five years without any breast symptoms so I am not much help from personal experience. Of note, even if your levels are within normal range, they might not be optimal for you. I just lost some weight, started feeling crummy, and sure enough, my TSH had dropped to .5, still normal but not optimal for me. All I can think of is maybe your weight has changed or shifted and this has affected size or fat content of breasts, causing discomfort from increased heaviness.

[Liz1967]

in reply to: Links between thyroid, cholesterol, diabetes #1185537

Your cholesterol will rise if you are hypothyroid i.e. high TSH. If you have gained weight from being hypothyroid, this could affect both glucose and cholesterol. Also, they have changed the ranges for what is considered normal cholesterol, blood glucose and blood pressure. I personally think this puts way too many people on drugs they probably do not need. With no change in cholesterol values and great ratios, I am suddenly hi cholesterol too.

[Liz1967]

in reply to: Switching doctors, preparing for appt. #1185535

I am managed by my internist and her nurse practitioner. Basically, you are dosed by your lab results so once your thyroid is gone or dead, I saw no need for an endocrinologist. It has worked well. I had a total thyroidectomy so I am not sure how long until there is no thyroid after RAI, but I would imagine if your dose has gone up you must be there. 100 micrograms seems to be an average dose for average weight women. All your internist needs really are current labs. At this point, I only get TSH and have dosed only by that for the past 4 years. Any symptoms are important but as you said, it is hard to tell what is causing them. I keep TSH between 1 and 2. Weight loss can make you require less levothyroxine.

[Liz1967]

in reply to: Double vision after OD – lost full eye rotation #1185521

As you probably know, Dr Douglas moved from Kellogg in MI to CA. I was lucky he finished all my surgeries before he left MI as I live in Cincinnati. Weird that prisms wont help. There is something with large stores that causes problems, not sure what it is but I cannot go into big box store without wearing prism and for some reason polarized sunglasses bother me too. I cannot move my left eye all the way to the outer corner or up at all but in the two years since muscle surgery, the right eye now moves all the way sideways but not up. Hopefully over the next six months, you will improve. I have found that moving my eyes in a figure eight seems to loosen up the stiffness a bit. Good luck!

[Liz1967]

in reply to: Double vision after OD – lost full eye rotation #1185519

I had severe Graves ophthalmopathy and have had OD surgery both eyes, strabismus surgery and lids. Double vision is not at all uncommon with orbital decompression and most likely if done through the nose or by the inner corner. While going in through the outside corner (lateral) is least likely to result in double vision, I did have a huge worsening of the double vision I already had going into the surgery. This was due either to nerve damage or a hematoma and it did resolve to my presurgery degree of double vision.

Several things. First, TED can and does recur even years later. Without OD, you can end up with very little space in your orbits as the eye muscles swell and stiffen. Should it recur or worsen, you could end up with optic neuropathy which is potentially blinding. So do not regret your choice to have it done.

Strabismus is the inability of muscles to work together and in our case it is due to scarring and fibrosis of the muscles and compression of the muscles within the orbit due to swelling. They literally cannot move well and the OD helps with the space restriction which can damage the optic nerve and cause glaucoma. Once more space becomes available, the muscles tend to shift to fill the space, alleviating pressure but also malpositioning the eyes also causing diplopia.

If your issue is seelling from the surgery, then yes, it could improve. Double vision can be alleviated with press on (Fresnel) prisms on your glasses if you wear them or over nonprescription glasses. Once changing stops, prism can be ground into lenses. If it is bad enough, as it was in my case, strabismus surgery can be done by a pediatric ophthalmologist. There will always be difficulty looking to the sides and down so you learn to turn your head but straight ahead single vision can be achieved through prism or surgery. I you are only bothered driving at night or in bad weather, consider yourself lucky! I still have difficulty even in daylight on expressways sometimes. Due to the stiffness of the muscles, fatigue especially can make fusion difficult.

So should you require strabismus surgery, it is an easy surgery, they do it on kids all the time. My surgeon did the lateral approach because his patients were not happy with the double vision resulting from the nasal approaches, so it is not rare by any means but the OD surgery can be sight saving.

I was fortunate to see a oculoplastic surgeon known worldwide for his Graves expertise. If you live near a teaching hospital or an eye center like Kellogg in Michigan or Bascom Palmer in Florida or Emory in Atlanta,for example, go there. In the meantime, you might see an optometrist for a prism prescription.

TED is not an easy disease nor is it predictable. I had a total thyroidectomy, then intravenous steroids, orbital radiation, and after it burned out, ODs, strabismus surgery and lastly 3 lid repairs per eye. And I have had one recurrence fortunately easily treated with oral prednisone.

Patience is truly necessary with TED. Healing takes longer and nothing can be rushed. So wait to see if there is improvement first. Then find the most experienced opthalmologists you can even if it involves traveling. The most important is the oculoplastic surgeon. Do not second guess the OD. It is necessary for most of us with TED, either at initial occurrence or later. The strabismus is mostly fixable, even though the stiff, fibrosed muscle caused by attacking antibodies are not and they sometimes need to be repositioned on the eye.

I hope this makes sense. I have been through it all with TED and my husband is an ophthalmologist so I had a great source of info but even then it was a challenge.

[Liz1967]

in reply to: Breasts getting larger? Rash? #1185517

Levothyroxine is a hormone chemically identical to the hormone produced by your thyroid. It is not a drug per se, it is a hormone. Any side effects would be from a dose higher than your requirement or too low.

[Liz1967]

in reply to: Relatively new on levothyroxine and lots of questions #1185512

I hear you on the migraines. Sometimes I think it is my IBS-D and then I get the headache and realize it was actually the migraine prodrome. Sometimes hard to sort it out.

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