[amyl]

#1074186

Hi Cindy!
Welcome and good luck!!
Amy

[adreeanna]

#1019807

Hi all
I’m Cindy from Manitoba Canada. Have had Graves and thyroid eye disease for 10 years.
I had the RAI 7 years ago, and the thyroid eye disease went in to inactive phase for 3 years, resurfacing in Sept 04.
It has been ruthless ever since. I have had orbital radiation, bilateral 2 wall orbital decompression surgery, immuno suppression therepy, and lid retraction surgery. All of those have left me feeling tired, drained, and not one iota better than before.
I am now scheduled for a complete thyroid ectomy next friday, in a last ditch attempt to level my blood chems and possible help to alleviate the symptoms of the eye disease.

I have fantastic doctors, but like most of us with Graves…its a crap shoot as to what is going to work for whom.

I am hoping that once this surgery is over, I will become totally hypo, with no interference from my thyroid, taking a nice regular dose of levothyroxine once a day, and find some relief from the constant pain, pressure, and double vision of the eye disease.

That’s my story!
Happy to meet you all!!

Cindy

[dolphin420]

#1074187

Hello my name is Annamarie but people call me Annie I have been living with graves’ disease since 2008 and I am depressed most the time and sometimes I cann’t stand all the doctors, the pills, the fact that I don’t have the strangth to do anything and have no power in my legs. I just feel like it would be better to just stop taking the meds and let the disease take over. So my aunt found this website for me and thought it would be good for me to talk to other people that have graves’ but I don’t know what to do? how to feel cause sometime I just don’t care about the true of it all and that it can kill me ” title=”Sad” />

[saumya]

#1074188

Annie –

Welcome to the boards and I’m so sorry you’re having a rough time. This disease SUCKS and seems to suck your life away from you sometimes. It is debilitating and demoralizing. ” title=”Neutral” /> I have gotten to a point where I live in the moment – just putting one foot in front of the other – and have stopped thinking about the future or past. This might not have anything to do with it, but have you had your levels checked? I had a really bad spell when hypO and getting levothyroxine has at least alleviated some of the fatigue.

I hope that knowing there are a lot of people reaching their hands out will help you cope. We are all here for you.

[dolphin420]

#1074189

Hello Cindy,
I have notice that bad things happen to good people and that bad people mostly have nothing wrong with them. I am to the point that I don’t understand thing like i had a rough life growing up and now I have this disease. It like how much can anyone person can stand. I have a question why is drinking orange soda bad for someone with hyper?

[snelsen]

#1074190

Hi Dolphin, I have no idea why drinking orange soda is contraindicated with Graves’. What is your reference for this piece of information? Of course, drinking one orange soda is waaay different than drinking many! That would be true of any soft drink, which, generally are loaded with simple sugars and all carbohydrate, which nobody needs, especially to excess.

Hi Annie, welcome to this site. It has saved my sanity during the past year and 1/2 since I joined. You will get a lot of support, and good information from the experiences of all of us. I am not sure where you are with Graves’, and what pills you are taking. The three basic treatments, after the hyper stages is controlled with anti thyroid drugs and a drug for fast heart rate, are:
1. Surgery-many people on this board have chosen this option.
2 radioactive iodine, or RAI-many people on this board have chosen this option.
3. Continuing with antithyroid drugs, ATD’s, and some have chosen this option.

So the big point is here, that it is a personal choice, but treatment should happen, in the hyper stage and afterwards.
The goal is to feel like you used to feel, have the labs agree with this/ With the surgery and RAI, the goal is to decrease the amount of thyroid hormone that has made us whacky and sick. Generally, there might be a hyPO phase, which is just as bad as the hyPER phase, and this is the time to believe you really will be OK AGAIN! The endo doc will prescribe the thyroid hormone which we all must have, BUT in the right amount that our bodies used to make before all this awful Graves’.
One name of the drug is Synthroid, that is what I use, but the generic name is levothyroxine, and it comes in generic forms as as well. Do write and tell more of your story!
You are in the right place. Life WILL GET BETTER, REALLY! Maybe we can help you!
Shirley

[dolphin420]

#1074191

hey well I heard from my aunt who looked it up and she said that its has to do with high frutose corn syrup which is like almost every soda which sucks because I love soda, so I was wondering if anyone else heard or knews anything about it?

[Kimberly]

#1074192

Hi Annie – Sorry to hear that you are struggling right now, but I’m glad that you found us!

Having our thyroid levels out of whack can absolutely affect our emotions. In fact, a lot of patients are initially misdiagnosed as having depression…when they were suffering from Graves’ Disease all along. We have some good info on our web site about this if you go to http://www.ngdf.org, click “Publications” (ignore the drop-downs) and then click on “psychosocial and emotional effects”.

Your #1 priority right now is to get your thyroid hormone levels back into the “normal” range…you will feel SO much better physically and emotionally once you’ve gotten your levels stabilized. I would suggest taking as active a role as possible in your own medical care and ask the docs to explain to you *why* you are taking the pills that you are on. (From your initial post, I’m not sure if you are on anti-thyroid drugs…or if you have already had surgery or RAI and you are now taking replacement hormone).

I agree with Shirley on the orange soda…one soda every now and then as a treat is going to hurt anything. However, sodas are filled with calories…have zero nutrients…and often contain unpronounceable chemical ingredients. While diet alone certainly can’t cure Graves’, I think that choosing mostly healthy, unprocessed, whole foods gives our bodies the best possible chance to heal.

Please check back with us and let us know how you are doing!

[Kimberly]

#1074193

Hi Annie – Looks like we posted at about the same time. I was just online on the Mayo Clinic’s web site, and their take is that the research on High Fructose Corn Syrup is mixed in terms of whether it is actually a health hazard. However, they quoted the American Heart Association’s recommendation that for good health in general, women should not consume more than 100 calories per day of added sugars from all sources (including soft drinks, cereals, and other processed foods).

Also, I don’t have any scientific basis for this, but I can tell you that personally, when I consume a lot of sugar, I find that it makes my hypER symptoms *worse*. I usually eat pretty healthy, but right now I am kicking myself for the 4 pieces of peppermint bark that I just consumed…I *seriously* am feeling ill now. I can feel my heart racing and I probably won’t sleep well. Can’t wait until the Holidays are over and all these blasted food temptations are gone! ” title=”Very Happy” />

[dolphin420]

#1074194

Hi Kimberly – I was on Propylthiouracil and now the doctor has put me on Methimazole. I have gone through the RAI but they said that it didn’t work and that I would have to do it again and I had depression a long time before the graves’. Plus I am sure that most of the stuff I do is bad for me like smoking cigarettes. I also have the racing heart and it sometimes make it feel like I am so tired but I just got new heart meds that are easier to take but I still feel like I don’t have energy. My sleep pattern is so off that its hard to do anything.

[Kimberly]

#1074195

Hi Annie – Once your levels are stabilized, you *will* recover your energy and you will have more restorative sleep patterns. I would encourage you to work with your doctors and make sure that you understand the next phase of your treatment. Are they wanting to bring your thyroid hormone levels down with the Methimazole and then do Radioactive Iodine again?

Have your doctors spoken to you about Thyroid Eye Disease? Mild symptoms can include dryness, swelling, excessive tearing, and a gritty sensation in the eyes. More serious issues can include a “bulging” of the eyes (proptosis) and double vision. The eye disease can occur *before* thyroid issues are diagnosed…or can occur long after we have been treated for hyperthyroidism.

It’s pretty common for Graves’ patients to have mild eye symptoms, such as swelling and dry eye issues. Unfortunately, smokers are about 3x more likely to get the worst of the eye symptoms (bulging and double vision) than non-smokers.

One concern with RAI treatment is that it can cause a worsening of eye symptoms following treatment. For some patients, the effects will be temporary…but the *worst* effects are seen in patients who smoke.

At our most recent patient conference in San Diego last October, I’ll be we heard at least five different presenters encourage Graves’ patients to give up smoking. There are former smokers on this board who can certainly attest that quitting is extremely challenging…however, continuing to smoke can put you at much greater risk for eye complications.

Sorry to give you ONE more thing to keep you up at night! ” title=”Wink” /> But Graves’ patients definitely need to be aware of the connection with smoking and eye complications.

[dolphin420]

#1074196

Hey Kimberly – my doctors have not talked to me about Thyroid eye disease but my eye have been bulging ever since I got the graves’ back in may of 08 and I have noticed that I have pressure behide my eyes and the sides of the eyes. I have also noticed that most of the time I sleep my eyes would be open slightly. I think the pain from my eyes is causeing me to have a lot of headache? My eyes also get dry but I don’t think I have had the double vision and I have dark circles under my eyes. I have really talked to my doctor because my primare doctor didn’t take my insurance anymore so I got a more depressed and stopped taking my meds and I end up in the hospital again. So my aunt as step up some and thinks she found a primare doctor and so I can get a referal so I can get back to seeing my thyroid doctor.

[snelsen]

#1074197

This post is to Cindy.
Hi, how are you doing after your thyroidectomy? Things going ok? THere are some good posts about thyroidectomy written today and yesterday that I hope you are reading Have you gone hypo yet? Had any labs since your surgery? YOu have really had a crappy time with this darn disease. I think when you are ready to begin your thyroid replacement, that you will slowly begin to believe that you WILL go back to feeling like a normal person, get your life back. I can relate to most that you have experienced, except the RAI. I had only the surgery. But I have had, and still do, TED, and with most complications that one can have with TED.
Do write, give an update. You might want to relabel your post, so it relates more to your situation now. This thread has ended up being combined with another thread that is addressing different stuff with another person. Just a thought.
Congratulations on moving through another forward stage toward getting your life back, with your surgery.
Shirley

[Bobbi]

#1074198

Hi, Dolphin:

Since you are feeling extra dry in your eyes, you probably should be using drops, regularly. People with thyroid disease of any type often experience dry eyes. The consistency of our tears actually changes. They become more watery: regular tears in normal people tend to have an oilier consistency, and the tears actually sit on the eye, lubricating it, without running out. So, there are daytime and nighttime forms of the artificial tears. The night form is a bit like petroleum jelly in consistency. These are not the "get the red out" types of eye drops, but a kind called "artificial tears." They can really help to alleviate the discomfort we often feel as a result of the dry eyes.

[dolphin420]

#1074199

Hey Bobbi – The hospital gave me Artificial Tears Solutionthe day before I got out the hospital. I think it is starting to work it says to use it 3 times a day 2 drops in both eyes. It just that I can be forgetfully like really bad and I starting to forget to take my meds and i had to change doctors which is a pain in its self. I am just at my wits end. Like I say in my other post I am trying to get back to see my thyroid doctor but I need a referal from my Primary doctor and it reall SUCKS.

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