Forum Replies Created
-
AuthorPosts
-
in reply to: Armour/Thyrolar?? Any advisement? #1070544
Armour and Throlar are both made from desicated pig thryoid. There used to be a strength and self life issue for them but best I can remember that is a problem of the past.
Since both have T3 and T4 a person who may do better on them, would probably be one who did not convert T3 to T4 well. There are some folks that get hyper symptoms on the Amour while staying in the normal ranges. Ask your doctor to see if it may work for you.
Actually you should have gone to the ER when this thing popped out. If for no other reason than to make sure your eye and vision was not endangered.
Insurance considers the decompression and eye lid surgery cosmetic so they do not have to pay for it. I went through the same grief with my insurance company. All it took was a letter from my eye doctor explaining the surgery was needed to protect the cornea and save my sight. No more questions.
As for the upper lid and lower lid surgery, yes you have to be awake. I hated it too. Don’t feel bad there. I shook from head to toe prior to surgery and had to have drugs to relaxe me. You need to be awake because when they remove the skin and fatty tissue they also reattach the upper and lower eye muscles to the upper and lower eye lids. You need to be able to blink and move your eyes to make sure the lids stay out of the way when you move your eyes.
Example when we look up the upper eye muscle pulls the lid up so it is not in the way and drops it again whe we look forward. The same thing happens with the lower eye lid. So you need to be awake enough to move your eyes and follow the doctor’s orders.
It was not so bad. I had my upper and lower lids done and it was not too bad. The result was well worth the effort and minor pain of the surgery.
in reply to: New to Post and RAI Decision #1071120RAI and TED,
There is a temporary worsening for TED symptioms after RAI for a percentage of people. However, if RAI is taken with oral steroids, the chance of an increase in TED is the same as anyone else. In other words, when steroid were used with the RAI there was no noticable increase in TED symptoms.
So if you are to consider the RAI talk to the nuclear doctor about steroids with the RAI to protect your eyes from a temporary worsening of symptoms.
It is sad that you do not have any doctors that treat TED in your area. I was kind of in the same boat here in Melbourne Fl. There were many talented doctors that knew what TED was and how to diagnose it but I had to drive 200 miles to Miami for treatment and surger.
Life will get better. Use your drops and keep the corneas moist and that will help a great deal.
I have Graves’ and life is good.
in reply to: rai update/detils #1071191Yes it is working now. With a high uptake rate your thyroid will be absorbing the RAI like a sponge. Keep us posted and let us know how you are doing.
And yes please do not spit or do other bodily fluid time things to others until the doc said it is OK. Even if you think they deserve it 9-)
in reply to: Do I still have Graves Disease? #1071187Yes you still have Graves’ disease and will for life. You are on replacement hormone to replace what the removed thyroid provided. Just as a diabetic has to take insulin when their pancreas stops working.
Both are autoimmune diseases that are for life. It is wise to watch for symptoms to being too hyper or hypo. We have a few brochures available for download on our home page at http://www.ngdf.org that provide a list of symptoms.
What is nice to know is that once you get on replacement hormone at levels you feel comfortable in, chances are on your side that things will level out for you and this will be a very manageable disease for you. We are only a click away for any questions and there are folks here almost around the clock willing to provide help or comfort.
I have had the the procedure where they use the roof of the mouth for use in the lower eye lid you are discussing. It is called a "Hard Pallet Graft". What it intales is a section of the roof of the mouth is removed. In my case about three quarters of an inch wide by about an inch long. The hard pallet is think like the cardboard on a christmas gift box. It is grafted into the lower eye lids to help to prop them up and it works extreamly well.
Recovery for me was about three weeks. Ask if your doctor offers a dental stint. That is like a temporay denture that covers the roof of the mouth after surger and during the healing process. I had the option for one and turned it down. In hindsight it was not a good decision for me.
The eye doc said it would feel like a really bad pizza burn to the roof of my mouth. It was worse than that. With the dental stint, heat and acids from food would not touch the open wound and would have been much more comfortable post surgery. The roof of the mouth has to heal by letting the skin grow back together.
I am happy with my surgery. My eyes look great. I just wish I had used a stint. Even if I had to do it all over again without one I would do it in a heart beat. The relief was immediate to my dry eyes and they looked great.
It is normally an eye doctor that is also a plastic surgeon that performs this surgery. Please feel free to PM me to ask any questions.
in reply to: thyroid thumping? #1071603Thyroid pain is common with us. With Graves’ it is normal to have thryoid swelling or a goiter. As part of the swelling process there is scar tissue developing in the thyroid and that can cause pain and the thumping you are describing. Talk to your doctor about it. Often all it takes is some tylenol to help with the pain and swelling to make it feel better.
But it is best to talk to your doctor to make sure it is not something else.
in reply to: Will it end? #1071579Boy do I ever remember those feeling bad days. You have to remember you did not get sick overnight and feeling better does not happen overnight as well. When we are diagnosed with Graves’ disease we have usually been feeling worse for some time.
As our bodies become used to the treatments and replacement or blocking hormones, our systems take time to get back to feeling normal. I remember I felt bad for a few years after RAI and replacement hormones.
I missed so much work I lost money due to taking time off because I used up all my sick and annual leave. But little by little I felt better. I cannot pick a date that I felt normal. It was a gradual thing. Just one day I thought, “It didn’t suck to be me,” and I also realized that I felt better for some time, just really didn’t think about it.
My memory was shot, temper was bad, decision making was flawed etc..
But over time things got back to normal. Work became easier, doing things became easier and memory was better (but to me it never returned to pre-graves’ levels) and I could do more.
Now I work full time, became a published author of 4 books. I volunteer here as I have for the past 11 years or so. I took a part time editing job with a publisher. I eventually was promoted to senior editor there and made partner in the publishing house last year. I dance men’s traditional at Pow Wows (my avatar is a photo of me at a book signing at Barnes and Noble) and my energy is back.Give it time. Soon you will realize that you have Graves’ disease and it will not run your life. Just do us one thing. When you feel better stick around and tell others that it will get better with time.
I have Graves’ and life is good.
in reply to: For everyone to laugh…. #1071630I often say "I have Graves’ and life is good."
Laughter is indeed good medicine. I know when I am down I like to put in a good funny DVD in and get a good laugh going and I do feel so much better.
I particuarly like when I can laugh at myself for something stupid I have done Graves’ related. There are too many to count but I will try to remember one and post it here.
in reply to: Realized some things… #1071670Amazing Huh?
If we do not fit the bill for thyroid disease it is often not checked. Go figure.
in reply to: Flaxseed Oil #1071831It is good to ask our doctor and pharmacist about flax seed oil and if it will interact with your levels. In general it is not a bad thing. You can also buy flax seed meal to sprinkle on your food. It is pretty much tasteless and is also a good source of fiber.
in reply to: Meds for two years #1071755Good question.
The usual treatment is to go on antithyroid drugs for a period of 18 months to 24 months. Then to decrease the dose to see if your thyroid levels go back up. The reason for this is the ATDs let the thyroid get a rest from overproducing hormone. In some cases people can go into a remission when the ATDs are removed gradually. If this happens then the doctor and you will have to have watch for your thyroid levels to go back up indicating that the thyroid is over active again.
If you go over active again then you need to consider going back on the ATDs for a longer period, a thyroidectmy or radioactive iodine to kill off the thyroid.
What your doctor is doing is a prudent treatment plan. In two months he/she will know if your thyroid levels will increase with the lower dose. If so then you need to think about follow on treatment. Normal levels after two years on ATDs is a good thing. Your thyroid levels remaining in the normal range would be a GREAT thing.
Do what the doctor recommends and see what happens in two months. The reason you wait two months is it takes about six weeks for the change in dose to reflect in your new thyroid levels.
I hope this helped to answer your questions.
in reply to: thyroid ablation needed again? #1071763Speaking with your doctor is in order. It is important that we understand why the doctor wants to follow a treatment option. If we are not sure why we need to ask.
I think you need to ask why a second RAI may be the treatment needed. Do not let them pass you off. Until you know why and are comfortable with it you have the right to know and understand.
in reply to: Ponder this….. #1071786I painted the outside of my house. Six weeks post soulder surgery and a Grave’s warrior. I did not feel like doing it at all. Pretty much felt like a slug but as you are discovering if we do things even when we do not feel like it we do get a sense of accomplishment.
I did see my endo last week. I am on six month followups. Thyroid levels are good, B12 is good, eye measurements are improved ( from 20 and 22 to 20 and 18) from six months ago. All in all a good endo visit
I am feeling good and life is not so bad. I have Graves’ and life is good…
in reply to: eye and skin trouble #1071771It is a great idea for all newly diagnosed folks with Graves’ to have a good eye exam. The doctor can use that as a base line to see if anything changes later.
The dry eyes and tearing is because our tears change when we have Graves’ disease. They become thin and do not stay on the eye to coat it and keep them wet. That is why our eyes run so much. We produce more tears to keep the eyes wet, and the tears do not hold on to the eye so it gets dry. The dryer they get the more tears are produced.
Good rehydrating eye drops are a must. They keep the eyes moist and stop or slow down the excess tear production.
I had the rashes too. I had a prescribed steroid lotion to rub into my skin and it worked amazing to get rid of the rash and insane itching I had.
Hope this information helps.
-
AuthorPosts
