[shadowrider]

in reply to: Has anyone else developed a shellfish allergy? #1063855

I was so glad to read this, because I thought I was the only one experiencing a reaction to shellfish; but only since I’ve had Graves. I have always eaten shellfish, we love to spend time on Cape Cod and eat fresh caught oysters, clams and lobster. Within 6 months of being diagnosed I noticed I was getting swollen eyes and and face, and sort of dark circles under my eyes the next morning after I’d consumed shellfish. I so infrequently eat shellfish now, because of the iodine content, I only have it on special occasions. Now I eat it even less- and maybe only 1 piece instead of a 1/2 dozen or more. Still though, I can see a reaction- I probably will have to eliminate it altogether at some point very soon. My endo does not know what to make of this- but I bet a good naturopathic Dr could tell you. I used to see one, and she was able to explain some things to me that were kind of obscure thyroid related questions- my endo did not know. I am now in remission, and not taking any meds.

[shadowrider]

in reply to: EYELID SURGERY, ANYONE???? #1063199

Hello, I had eyelid surgery in Dec. 2010. I have had TED for 2 + years- and underwent external beam radiation Sept of 2009 to help subdue the effects of the disease. Waited over a year to make sure things settled down as much as they were going to. I had been experiencing double vision, eye dryness, swelling ( of course) and migration of the orbital fat surrounding my eyes.
I always had a thought that when the TED slowed down, I would at least get and eye correction out of the ordeal.
I went to a specialized eye clinic- the Massachusetts Eye and ear infirmary located in Cambridge, MA just outside of Boston. It is part of Harvard Medical school and I can recommend them very much. My Doctor is a God, he did such good work. He operated on one eye at a time, a week apart, under local anesthesia. It never really hurt more than extra strength tylenol could handle. It is now 6 weeks later, and there is barely any remaining discoloration to my eyelids, and minimal swelling- if any. The results are amazing- like brand new eyes- I’m so glad I did it. If I can answer any questions for you please feel free to ask. Good Luck , and good health, Susan P. (Graves in remission for 2 yrs, no medication for 1 year.)

[shadowrider]

in reply to: Radiotherapy update-TED and getting zapped! #1068030

Hi Lakeview-Sorry for the delay in reply. I don’t think you should wait it out. I don’t think it is acceptable to have to just live with terrible double vision. I mean quality of life is what it is about, right? For me driving is a daily part of my life; I commute 50 miles to work and back every day. The double vision became a scary element in my life. Acording to my Dr’s the fact of not having had the TED for long, was a favorable aspect to electing to undergo treatment. So waiting might not work out to your advantage. If you have not already seen a eye specialist-do so now. I mean someone who routinely treats TED and like conditions, not an optometrist. I see an eye plastics surgeon at the Massachussetts eye infirmary. My great passion in life (among a few) is riding my motorcycle. Now it is 3 weeks since my last treatment, and the double vision has improved considerably. I went to my regular eye Dr last week, and she was able to measure a 50% improvement in my eye tracking since the last measure in July. Went for a nice autumn ride on Sunday, and it was great to be able to see clearly again, and ride like the wind! ” title=”Very Happy” /> All the best Susan

[shadowrider]

in reply to: Radiotherapy update-TED and getting zapped! #1068027

Hi again,
I haven’t taken my mask home yet. My Dr was not on site on my last treatment day, and the nurses wanted his ok to give it to me. When I go back in a month, I’ll take it home. I intend to have a ‘show & tell’ session with co-workers, friends and family. What did you do with yours?
Susan

[shadowrider]

in reply to: TED & orbital radiation therapy #1068981

Hi Thanks to all that have replied to my original post. My experience with the prednisone side effects include; swollen face, bloating and immediate weight gain. I also felt very hyper, as if I was on big doses of caffeine, and need I mention the incredible excess sweating? But I was able to start wearing my contacts again, and not feel like my eyes were popping out of my head literally. Did I want to quit taking the prednisone right away? Absolutely!

My eye Dr did not mention the possibility of taking the prednisone at the same time as undergoing the radiation therapy. My big question to those who have had this procedure, is what side effects did you experience from the treatment? The literature the hospital sent me was geared towards cancer patients, and mentioned burns on the skin, hair loss from the area treated, and a feeling of tiredness through the duration of treatment. Is this true? What happened to you? Why did you do the treatment twice? Was it different the 2nd time?
How come you wouldn’t do it again? I have my consult with the radiologists tomorrow-wish me luck.
P.S. I also have a prism in my eye glasses, and they have definitely helped. The double vision is worse when I am tired.

[shadowrider]

in reply to: HELP ME! #1074785

HI Sarabear
The health food stores near me sell different kinds and flavors of the protein powder in single serve packets; so you can try a few to see what tastes best to you before you commit to a whole jar. The one I like is made from whey powder-which is derived from milk. It is vanilla flavor, so it can go in chocolate milk, or juice and not taste strange. It is a personal choice.
Or if you have a blender; whiz it up with fruit and make a smoothie- you really can’t taste it at all-I think it is the texture of some of the protein powders that get to people. If you can tolerate milk products., the whey powder is pretty smooth.
It couldn’t hurt to see a dietitian if you don’t think you have a good handle on healthy eating. Maybe getting a book on it to begin with, so you have something to reference from?
Does any one on the board have any suggestions re: a recovery diet?
Susan

[shadowrider]

in reply to: Muscle Loss in Legs & More #1074810

HI Elise, I was diagnosed in June ’08. At that point I was unable to climb stairs without pulling myself up on the handrail. A bad day came when I was unable to lift a small saucepan with one hand and try to spoon the contents into a bowl. I am a motorcycle rider and I kept tipping over on my bike because I could not hold her up anymore, no strength in my legs or arms.
By August ’08 I was feeling much better and stronger, through ATD management and nutrition. I was able to go on a 500 mile tour through New York and Vermont. I definitely wouldn’t have even thought this possible in June.
My Doctors have never said anything about iodine levels in dairy or fish or eggs-but I did get a weird reaction to eating lobster in Oct. It seemed to exacerbate my TED-made my eyes very swollen. But when I asked my endo-he did not seem to feel there was much or a correlation. He mostly warned me about anything contained seaweed-, and stuff with iodine added to it. Luckily lobster is a once a year treat I can live without.
In addition to my endo, I also see an acupuncturist bi-weekly, and a Dr of Naturopathy-who gave me a lot of good advice on lifestyle changes, and food choices. Answered questions that some others couldn’t. I do take a few different herbal products in addition to ATD’s and vitamins.I have just started on some very light exercise- even though I am feeling stronger-everything is just hanging from my arms and legs-but at least I feel pretty good. I will be 53 this spring.
Susan

[shadowrider]

in reply to: HELP ME! #1074783

Hi
I’m sorry you are feeling so terrible. My sincere condolences on the loss of your child. I was diagnosed with Graves in June’08. I had unbelievable fatigue, muscle wasting, and aches in my joints. after my diagnosis I began seeing a Dr of Naturopathy to help with lifestyle changes and nutrition. One of her recommendations that really helped in the long run was increasing my intake of protein. Because your metabolism has been on hyper drive-your body is using up nutrients faster than you can supply it with fuel. I was told to consume protein every 2 hours, as a meal or snack. I bought protein powder and mixed it into shakes, and also ate Kashi protein bars, slices of turkey or chicken. Along with that I also committed myself to taking vitamins every day, and not forgetting! By August I had gotten a lot of my strength back, and previously I could not even walk up stairs or lift anything. This despite having no normal bloodtests, and I am still on a very high dose of methimazole (30mgs/day) All of the other posters are very correct in saying this is a whole body issue, and it effects all of your cells.
Do try to give up the coffee, or drink green tea, so at least you are getting some benefit from your beverage. Try to eat throughout the day so you don’t fall into the pattern of being too tired to eat when you get home from work.Think of food as part of your medicine. The disease has depleted your body, and now you have to try to build it back up. Don’t lose hope, there is a light at the end of the tunnel. If you have any friends or family that will offer you help with your son, now is the time to take them up on their offer. Now is also the time to let messes stay where they are as much as possible, and only do what is absolutely necessary. I am 52, and I never was sick before I got Graves. I am hoping I will be able to get well, and see this into remission. All the best to you. Susan

[shadowrider]

in reply to: Omega3’s for TED #1074862

Hi Amanda
My eye Dr also suggested omega 3, and I take 2000mgs of Flax seed oil daily. It is supposed to increase the viscosity of your tears, as TED makes your tears less viscose=dry eyes. The flax seed oil doesn’t taste as bad as the fish oil, and does not have the risks of fish products. I also use a OTC product called Celluvisc made by Allergen. They are preservative free, single dose eye drops. I use them at night before I sleep, and it does help my eyes feel better. I hope you are feeling better soon. Susan

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