[MariaG]

in reply to: Smoking and Graves Disease #1169345

As much as I know, the chances of NOT GETTING the thyroid eye disease (once you have/had/will have Graves) – TED – are quite SMALL for SMOKERS. The more cigarettes one smokes, the higher the likelihood, the worse the problems, etc.
So there is definitely a ‚scare factor’- with TED, worse case scenario is blindness, but double vision and proptosis that TED might cause (and for smokers, it seems as if it almost always the case) are hard enough for most. If there seems to be no other reasons for quitting, maybe this scare factor will do the trick.

I myself quit almost four weeks ago now. And I must say that making decision itself was much harder than the cessation process. I use nicotine patches (ok by endo) and I feel they help a lot (it’s a 10-week process so the body is not nicotine-free, but apparently with cigarette smoking and TED it’s something else that affects the eyes). So this past month I have been addition free (45-60min a day more time and I’m truly liberated by knowing I can do whatever I want at any time I want) and experienced only positive outcome – free breathing, the scents in the air give me the ‘happy’ feeling, I work out a lot and the progress there is enormous as well. All-in-all, my enjoyment of life is much greater. Quitting smoking is truly a smart thing to do and right now I’m fully committed to staying smart.

So, please encourage your friend. Quitting is different for everyone, but even if the beginning happens to be excruciating, the benefits are huge (you can check it here – quitting cold turkey – http://whyquit.com/whyquit/A_Benefits_Time_Table.html. The list seems to apply for aided quitting as well – at least in my case). If one quits, the likelihood of getting the worse of TED seems to become smaller (according to my endo and I’m hoping that’ll be true in my case – got swollen eyelids, tired and sometimes red eyes, diplopia in the morning for some minutes, but at least it hasn’t gone worse since I quit smoking – all the symptoms developed already while I smoked).

P.S. Apologies for any hiccups in my English – I’m not a native speaker.

[MariaG]

in reply to: Will eye problems (diplopia) continue to escalate? #1169512

Sorry, Gatogirly, to hear about your hardships, but it’ll get better gradually – hang in there.
I’m certainly not an expert nor have I personal experience on exercising during active TED (as mine is just mild right now), but my story with Graves and exercise is pretty straight forward – I try to work out every day if I can and try to be very careful – keep the heart late way below cardio level.

In June, while I was not aware I had Graves, I took up swimming since my knee injury currently doesn’t let me to jog, inline skate, bike, etc. Never liked swimming before so I can’t say I was a good swimmer, but not a bad one either. At first, the swimming was extremely hard – I couldn’t freestyle swim more than 25m at a time. I thought it was because I was a lousy swimmer so I worked on my technique for a month.
At the same time, I was constantly tired and my heart started to beat very fast all the time. Not knowing the reason (and partly blaming my excessive smoking), I waited three weeks before making an appointment with my GP and continued to visit the pool. GP instantly suspected hyperthyroid activity and blood test confirmed it. My CBC was also very bad at the time (e.g. HGB 113), hence the fatigue and lousy swim.

Exercising is one of the first things I always ask when I got health issues. When I was first diagnosed, my GP never advised against it, but said to listen to my body. So I took a 3-week break from the pool and was just walking for 15-30min a day.
After I had been taking beta blockers and Tiotil (for the thyroid) for three weeks I felt very healthy and returned to pool and went to the gym as well (but mostly for my knee rehab). I was a completely new person – swimming was easy and effortless. New tests were also taken a week later and it showed great improvement (see my first post). I was not training, I was just swimming slowly and tried to make sure my pulse wouldn’t go beyond 130 (as overdoing it can damage one’s heart).
I asked my endocrinologist about exercising as well and she first said no, but when I explained my point of view, she said I should just lower my usual training load.

Today I feel as healthy as ever (except for the eye issues) and since Friday when I quit smoking, my life has taken more huge steps for the better. I’m very happy about not feeling addicted all the time (supposedly a cigarette affects the body for 20minutes and in between the body is constantly in withdrawal), I breathe freely and I’m a lot less nervous than before. I believe some of that could be due to the nicotine patches. The overall health though is because the thyroid drugs have worked well (my T4 was already five days ago slightly below norm, although TSH is 0.04, but as I read, it takes time for TSH to level itself). I take 3x less beta-blockers than in the beginning and will probably stop those too in the coming days
I’m still swimming while trying to keep the pulse between 110 and 130. I’m thinking I’ll begin with actual heavy training only after I’m completely healed (I understand that it can take years). Right now I’m just enjoying the slow pace, fine tuning my technique and falling in love with a sport that is new to me.

I think that it is good to exercise by being very-very careful and never overdoing it. Once the feeling is better, the person will naturally do more, but one has to make sure to take baby-steps, no sudden increase in exercise would be good. Slow and steady…
All this is personal experience and not expertise – I’m not giving advice, I’m very poor at sports theory and I’m not a doctor.

On the eye exercise matter – Since I don’t have my own ophthalmologist yet, I asked a random one (describing the condition in details) and he said to look for the eyeaerobics online. It wasn’t explicitly clear whether he actually recommended it, but he sure wasn’t against eye muscle exercises. I’ve looked a bit, but during five minutes couldn’t find anything for free. On the other hand, the answer included a thought that once my thyroid is under control, the eye symptoms will reside (although this board proves otherwise). Thus, this issue is still unresolved.
Reading the previous post by Shirley I’m thinking that the good side with eye exercises is perhaps the possibility of hindering process rather than curing it. However, first question is whether eye exercise would be harmful. If not, it wouldn’t hurt to try.

I also changed eye drops to those without preservatives. They do feel a bit more effective. However, they are 10x more expensive (6x per day = $60 a month), so I wonder what exactly is the benefit compared to those with preservatives and why Shirley recommends more than 6x a day?

[MariaG]

in reply to: Will eye problems (diplopia) continue to escalate? #1169509

Hi!
Thanks, Kimberly! I’ll check about selenium with the endo when I get a hold of her. I checked the other supplements as well and those are luckily iodine-free.
I also kept the head more elevated at night and even though the swelling was the same, I felt less pressure and even double vision didn’t last as long as yesterday.

Snelsen – thank you for your input and I hope things will work out for you soon!
I think I currently use drops w. preservative, so I’ll switch now.
The closest free ophthalmologist time is at least two months away and I need a referral from the endo (who is hard to get hold of). That’s why I’m searching for the info on my own. I’ll book the time, however, since this cannot hurt in any case.

I’m still looking for eye exercises to suppress/control diplopia. Because if the cause is weak muscles, exercise seems to be the logical approach (a muscle is a muscle, right). Couldn’t find anything good and free online though yet.. On the other hand, sometimes the muscle needs rest (and my eye does feel somewhat tired most of the time) – so I’m still not sure whether to exercise or not. Any advise would be helpful ” title=”Smile” />

[MariaG]

in reply to: Will eye problems (diplopia) continue to escalate? #1169506

Thank you, Bobbi!

Glad to hear of someone who came out of this disease on the plus side. Well done!
The thorough explanation on the eye behavior is very useful. I put great value in understanding the details.
So the worsening eye seems to be somewhat inevitable… I’m still hoping that this is not always the case. Sports and work is extremely important to me and I’ll do anything to be able to keep these activities up and running. This morning was a bit easier than yesterday, although I slept even less today (6hrs total) (and I never had trouble of sleeping before the eye issue started to emerge).

So, is there perhaps something else besides smoking cessation and eye drops that one can do to minimize permanent damage to eye muscles and hinder the course of eye use degeneration? Perhaps some eye exercises? Or maybe someone has an experience with alternative, non-invasive, approaches (e.g. acupuncture)?

I’ve also taken daily dose of glucosamine 1000mg+chondroitin 800mg+cod liver oil 1000mg for the past three months because of an injury (prescribed by ortho, cartilage damage in the knee). The endochrinologist said there’s no harm in that, but I’m not 100% sure, because Graves symptoms first occurred after a month I started with glucosamine and those supplements contain sea creatures.

[Author]

Posts