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#1 July 31, 2018 08:29:43

Swell2018
Registered: 2018-07-31
Posts: 1
Profile  

Multiple questions

Thanks in advance for any responses.
I was shocked to be diagnosed with Graves disease in early 2004. I was in my early 40s and had always been extremely healthy. I had recently been on a diet and was incredibly pleased to be losing weight for the first time in my life. I felt fine. at my six-month Dental check the hygienist noted that she felt something on in my throat area and suggested I ask my regular dr on my next visit. I did. She scoffed at the idea but ran the blood tests anyway. She immediately referred me to an endocrinologist who then diagnosed me. He felt strongly that I should get the radiation treatment or have surgery but was willing to have me start the methimazole immediately. it took going up to 40 mg a day before my thyroid levels stabilized. Unfortunately I also gained 50 lb during that period. Gradually, over the years I have been able to reduce the amount of methimazole until a year and a half ago I was only on 5 mg a week. Suddenly within 2 months my levels went way out of whack and I had to quickly increase my methimazole. Over the last year my thyroid levels have been completely stable on 25 mg per week. However, I have been struggling with two new symptoms.
The first began just before my thyroid levels went out of whack and involves unexplained random internal pain between my knee and ankles in both legs. None of the doctors I have been to have any idea what it could be. It is not constant and seems to move around some. Almost like it is in the bone. Bone density test showed normal.
Second issue has been the puffiness of my upper eyelids. It is really severe and bothering me immensely. They feel heavy all the time and are pressing on my eyelashes, causing an increase in mild eye infections.
I have been reading some of the posts on this topic. My endocrinologist said clearly that it is not caused by my thyroid levels being off but by the antibodies from the graves disease that are in my body. She did not give an opinion on whether I should have a blepharoplasty or not but deferred to the ophthalmologists. I have had two ophthalmologists, each of whom I have only seen once, both tell me that a blepharoplasty would help me immensely. I am not convinced just as I am not even sure that they are aware that I have Graves disease. I have a consult with the surgeon again tomorrow morning.
I am wondering about this TED - is it an actual diagnosis that is separate from whether one has Graves disease or not or is it a possible symptom or manifestation of having Graves disease? And what exactly is TED? I get the feeling from reading that it is more than protruding eyes or swollen eye muscles? Are those swollen muscles different from swelling in the eyelids themselves? Medications for my eyes like drops and antibiotic creams and anti-inflammatories and cold compresses, Etc have not reduced the swelling. Thus, it does not make sense to cut off the excess skin of the eyelid (which is how they explained the blepharoplasty helping) if the swelling is still present.
I feel extremely blessed to have experienced such remarkably good health in spite of having Graves disease these past 15 years. I have started taking selenium and I'm wondering how long that would take to have an effect on the swelling. Thanks again. So happy to have found this form.

Edited Swell2018 (Sept. 24, 2018 10:40:38)

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#2 July 31, 2018 18:39:31

Liz1967
Registered: 2014-02-25
Posts: 259
Profile  

Multiple questions

Do not have a blepharoplasty. Please see an oculoplastic surgeon who is familiar with Graves orbitopathy. TED is caused by antithyroid antibodies mistaking eye tissue for thyroid and attacking ocular muscles, lacrimal (tear) glands and soft tissue surrounding the eyes. It causes dry eye, lid swelling, muscle swelling and scarring causing double vision and eye bulging. It is not something to mess around with and it has to burn out before surgical fixes can be contemplated. It can affect the optic nerve which is the worst case scenario causing vision loss. There are studies suggesting early and complete surgical removal of the thyroid can help, either by preventing or shortening the course of the eye disease. Swollen eyelid is a mild symptom but any facial surgery can exacerbate the eye disease. It took steroids, ocular radiation and 6 surgeries on each eye to restore my vision and cosmetic rehabilitation, so you really need to find doctors with expertise and lots of experience with Graves. The sooner you get your thyroid levels under control and stable, the better. I went the thyroidectomy route and it did halt the eye disease as well as making me feel normal again immediately postop.

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#3 Aug. 1, 2018 18:05:56

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4075
Profile  

Multiple questions

Hello and welcome - thyroid eye disease can occur before or after your Graves' disease is initially diagnosed and treated, although it's more common that they occur together.

I'm not familiar with swelling specifically on the upper eyelid. It's *very* common with TED to get swelling underneath the eyebrow area, or the upper eyelid can retract, or sometimes the actual conjunctiva can become inflamed.

I wish I had some insight on the pain - there *is* a condition related to Graves' called pretibial myxedema that appears on the shin; the manifestation of that is usually a rash that resembles an orange peel, except that it's red. Don't be afraid to be the squeaky wheel until you find a doctor who can help you put the puzzle pieces together!



Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#4 Aug. 1, 2018 19:15:34

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 146
Profile  

Multiple questions

Do you think the pain in your legs could be in the muscle? Years ago I was having calf pain, usually in the mornings - often when I'd stop at the convenience store on my way to work. It seemed to come on after running around to get ready, then several minutes of inactivity in the car. My doctor didn't know what was causing it but ordered an ultrasound to rule out a blood clot. Months later, I had a similar pain in my hip and she prescribed Mobic, an anti-inflammatory. It actually took care of my calf pain as well as my hip pain, so I'm convinced my pain was due to inflammation.

Now, I have issues with my kidneys and try to avoid anti-inflammatory meds. The calf pain went away for years, but it's back now. I'd heard good things about turmeric for inflammation and verified with my nephrologist that it's okay for me to take. It works pretty well. I notice a difference when I forget to take my supplements.

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