[Shazzer1976]

#1067489

I’m with you there on the nose blowing! First day post surgery all I wanted to do was give my nose a good blow! I have been lucky though and haven’t had any sneezing fits or really runny noses. I did take a tickle in my throat this morning and that scared me a little. All in all I have been very lucky and am pleased with my recovery so far – this time last week I couldn’t stand, today I walked to the shops to pick up my prescription and really enjoyed the fresh air. ” title=”Very Happy” /> I feel like a bit of a fraud being off work but I think I will just use the time to really look after myself. and make sure that when I do go back I am well and truly fighting fit. (very self-indulgent!)

Sharon

[hyperm]

#1067490

Sharon glad you are on the mend! Hope it all settles down for you.

I have some great news (fingers crossed), but since my post my eyes seem to have settled down in the last week or so. They are not as swollen and they are watering or gritty anymore. This coincides with my hair loss tonight while washing my hair was significantly less. I am due for a TFT on the 21st of Dec. Why does it take 8 weeks for each change in thyroxine meds to reflect on the TFT? When you are on crabimazole it reflects monthly?

xxxxxx

[Ski]

#1067491

The body reacts to new levels of thyroid hormone replacement immediately, but the TSH doesn’t reflect the body’s equilibrated response for at least six weeks afterward. The goal with ATDs (carbimazole) is a little different, and things can be managed with a tighter timeline, but the body can react strongly to carbimazole, so doctors need to be right on top of that in order to avoid even brief periods of overmedication resulting in hypothyroidism. When we’re changing doses of thyroid hormone replacement, we’re changing by tiny degrees, and we do that on purpose, because radical shifts in thyroid hormone levels can be so debilitating, and when we’re "close" but not quite "there," we need to manage things far more slowly and make certain we know what the body’s reaction has been to the latest change. Does that help?

[george61]

#1067492

8 weeks after surgery just went to the doctor today. Vision has drastically improved and the pressure is at 16 – never thought I would see that number again. Numbness still slowing getting better although he said there is a small place that will always be numb since there is a difficult in that area. He says I can get the other eye done whenever I am ready since it is not as bad as the other but he feels I will still need it. Still have depth perception issues especially with stairs. There are still a lot of unknowns he says as far as what will get better before my next appt. in 3 months. Am very happy so far with results and dr. seems very pleased.

[hyperm]

#1067493

Great to hear so many positive results ” title=”Smile” />

I think my eyes have went into the cold phase and have really settled down. The lids are no longer puffy – very little tearing/blurring unless I have been up half the night with the kids (thats normal I think ” title=”Very Happy” /> ) and although I have the bags they aren’t too bad and I hope they will settle down (no? ) xxx

[JackieC]

#1067494

I had orbital decompression surgery 3 weeks ago on my right eye. I am 25 years old. I was diagnosed with graves disease on 2007. After I struggled to reach stability for a year I had RAI. It was fine except for the weight gain which none of my doctors told me about. I am 5"2 and I weighed 120 and i balloned to 145 which looks bad on someone so short!

My eyes went crazy for about 2 years and then stopped. One was much worse then the other. My right eye had proptosis of 11mm. The average eye is 3mm. It is VERY important to find a surgeon who you trust and feel comfortable with. I was lucky to find one (after several consulatations with many) That i liked. He is a pioneer in both the medical mixed with cosmetic results. He was a plastic surgeon who became interested in this disease 30 years ago. I am young so yeah, I care about what i look like and wanted to look great as well as feel better.

I am amazed with my results and would do it again in a heartbeat. I had all three walls of my eye socket carved down (inside under and outside) My eye went back in 6 mm so I am almost at the average now at 5mm. I have the tiniest scar under my bottom eyelashes. He tightened up my lower lid as well. I have to go back in about 2 months to get my upper lid adjusted to match my other eye perfectly. You just have to wait for the swelling to go down and everything to settle to get the last bit done so they can make sure it matches evenly.

From my understanding your eyes can changed after RAI because for several months your body is adjusting to not having a thyroid and it is still producing TSH T3 and T4. Your body tries to send it to your thyroid but thats a no go after RAI so it goes to the next closet part of your body that has similar traits which is your eyes and your knees I heard. So your eyes get wacky and you can have joint problems. This can last for 2 years or so. That is why your eyes get pushed out from this "fat " that has been put there and has attached itself to nerves and blood vessles.

I am not sure what some people meant as to cutting out the fat on your upper eyelids. There are so many nerves that the "fat" that has formed are attached to I did not think you could remove it? What I had done was carve out the bone and then had that "fat" pushed down into the new space that was created. I have a little bit of facial numbness which is coming back. The middle bone under you eye has a nerve that gets bruised during the surgery so facial numbess occurs. My vision was a little wacky the first 2 weeks, slight double vision and watering. My doctor said that would happen, obviously we all freak out a little when you are not 100% better in a week. But so far everything has healed according to the schedule he told me so I am confident in my recovery. I hardly had any brusing and the swelling is almost gone.

Getting surgery is not for "cosmetic" reasons and you should not feel vain. It ruined my self esteem. I was 23 / 24 with wacky eyes! That was horrible mixed with the constant pressure I felt. It is amazing how much better I feel and I want to take photos again! The pressure on my eye is gone too. The week after kind of sucks but oh well, it was worth it! I would get it done sooner than later as long as the "hot" phase is over. I would not have wanted to look or feel like that for another 2 years!

As for the weight, I have always been very active but I tried nutrisystem. The food is boring but I lost 25 pounds and are now back to 125. It took me almost 6 months to do it the "right way".

2010 is going to be my year! I was miserable since I was diagnosed with graves in 2007. It is a crappy disease and it takes a long time to heal and get back on track with your life. I hope everyone stays positive! There can be an end in sight and a "normal" life eventually!

[Shazzer1976]

#1067495

Hi Jackie,

I really enjoyed reading your post and identified with so much of what you said! I was 19 when my Grave’s disease was diagnosed. The stupid thing is I now realise how obvious it was that I had a thyroid problem but I was too embarrassed to go and speak to a doctor!

It’s not nice being in your twenties with ‘wacky eyes’. I work in a school and I found that tough at first dealing with some of the comments some of the kids were making. (I had been quite sheltered, surrounding myself with good friends!) You might expect these comments from children and teenagers who don’t maybe understand the consequences of their comments, what I found much harder to deal with was some adults – a shop assistant I was buying make-up from, an optician’s assistant(shouldn’t they know better!). I think I was crazy to keep putting the surgery off now while I tried other options – eyelid surgery.

I also had RAI and it helped my condition although I am now left finding it difficult to lose weight! Still, it is a vast improvement on how I felt when the disease was still active in my body and with a little perserverance and exercise I am sure I will manage to lose weight eventually!

Thanks for sharing your experiences!

Sharon

[Ski]

#1067496

Just a quick comment on this:

From my understanding your eyes can changed after RAI because for several months your body is adjusting to not having a thyroid and it is still producing TSH T3 and T4. Your body tries to send it to your thyroid but thats a no go after RAI so it goes to the next closet part of your body that has similar traits which is your eyes and your knees I heard. So your eyes get wacky and you can have joint problems. This can last for 2 years or so. That is why your eyes get pushed out from this "fat " that has been put there and has attached itself to nerves and blood vessles.

First ~ if we have no thyroid, we are NOT producing T4. The thyroid doesn’t "receive" thyroid hormone, it produces, stores and releases it, so once the thyroid is gone, there is none to be had until we start taking replacement hormone. The pituitary always produces TSH, that’s how we can regulate our dose of thyroid hormone replacement.

If it were true that the body were adjusting to "not having a thyroid," the same phenomenon would occur after thyroidectomy, and it does not. The best theory is that escalated TED symptoms following RAI has something to do with escalating antibody activity due to the action of RAI. TED is a separate autoimmune disease in which antibodies attack the fat and/or muscle tissue behind the eyes and causes it to swell. The antibodies create new cells between the muscle fibers or within the fat, and the resultant swelling creates a condition where the eyes have nowhere to go but forward, since they sit in a cone-shaped cavity of bone.

Hope that helps a little ~ just had to clarify.

[Author]

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