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in reply to: Constant glare in sight #1174261
I have had a lot of vision problems with TED including what you describe, tho maybe not so dramatic. You do not mention any double vision, but the blurriness could be a lesser version of that or a precursor. I have, in addition to the ophthalmologists with whom I have worked, a wonderful optometrist who understands the illness. He prescribed prism glasses (not freinels which did not work at all and really made my vision blurry.) I used the same glasses for 1 1/2 years but last spring, a year after orbital decrompression, which was quite successful, my vision started to deteriorate. The optometrist did a very extensive work up and found 1) my refraction had actually changed and 2) I needed addional prisms. I got new glasses and voila, I could see and read etc.
But the glare problem persisted, of course because the eyes are open too wide with TED. I knew I would be scheduling a lid surgery to lower the lid and reduce the light entering the eye which also dries cornea.
I had that surgery a week ago which seems successful but it will be a while before I know for sure. So several things: Where are you on the inflammation, stability curve with your TED and are you a candidate for any of the surgeries? Has your refraction changed? Are you using enough artifical tears and things like refresh PM at night to keep your eyes lubricated? Has your optometrist explored the idea of putting prism in your eyeglasses?
I hope this is helpful.
in reply to: Liver Function #1173037Hi VanIsleGal, I have been on PTU for just over 2 years. Presently I am taking 150mg a day. I got headaches from Tapazole, for some reason, but I tolerate the PTU well and my thyroid levels are all within normal range except for thyroid immune globulin, which is being addressed. I see my endo every 2 months and he does a panoply of blood tests including liver function. However, I have to remind him about a number of things like testing the immune globulin 4 times a year, updates on ultrasound to see if the size of the nodules is increasing or decreasing or staying the same etc.
I request a copy of my blood work before I go into the treatment room so I can follow along with him as he reviews it with me. Then I copy it and send it to my primary care doc. She is very on the ball and will tell me if there is something else that needs to be done and she would order it for me if need be. You might try that route.
At Kaiser, everything is digital so your primary care doc can easily access the labs and you can discuss your interest in the liver function test and probably get it thru your PCP and not have to pay for it yourself. My housemate works for Kaiser and assures me this is true.
It is also possible that 7 weeks is way too soon for any problem to show up and maybe that is why the doc is waiting. You might ask that the next time you get labs. I hope this is helpful.
I had my orbital decompression a year ago this month. The main side effects I had were swelling and facial numbness along the outside of the eye on the face. I got a good tip from this board to put pillows under the mattress to elevate the head of the bed and to start several days in advance to get used to it. This helps to reduce the swelling more quickly. I followed the icing recommendations to the letter and the bed tip. The major swelling went away in a week or so, but it took most of the months of June and July for the swelling to totally disappear.
Most of the numbness is gone but there is some still present. I saw the doctor last week to discuss the eyelid surgery and told him I still had some numbness. He said it might disappear and it might never disappear. I have had many different kind of surgeries and I know that to be true. Numbness often takes much longer to disappear than what is told us, but one day you wake up and realize it is gone. The numbness is not really annoying nor does it impede the functioning of the eye in any way.
The other symptoms you mention, double vision was present for me before the surgery and is a muscle problem that might require a muscle surgery. I have been seeing a muscle doc to evaluate my need for that, but we have decided that it is quite intermittent and I am using glasses with prisms instead.
Light sensitivity is one of the major Graves eye symptoms and the orbital decompression would usually decrease it rather than increase it. I was unable to drive at night before the orbital decompression but now can. However, I still have some light sensitivity, cannot sit opposite a window if there is glare, cannot endure flurescents and will be having eyelid sugery to lower the lid to address this. That is usually required if the eye is really protruding. Mine is now minimally protruding but because of the light sensitivity, lowering the lid should do the trick. I hope that this is helpful.
in reply to: Thyroid immune globulin #1171821Yes, I understood that much, but does it mean that I should ignore the fact that this number is getting higher and higher at what seems to be a rapid rate, or does it mean that I should ask for another fine needle biopsy or another ultra sound? The endo never has touched me, so he never has felt for a goiter etc, and the nodules are not visible. I did have a second ultra sound in June of 2011 and the nodules had not increased in size, but the tiglobulin number was going down at that point.
in reply to: Newly Developed Lactose Intolerance #1170709Re: lactose intolerance. It seems I have developed it or I think I have. I have not had RAI but have been on 50mg PTU 3x a day for almost 2 years with intervals of 2x a day or once a day (latter did not work.) something is going on with my GI tract and you might want to explore this further. My bowels became very sluggish last summer and after many months of misery and endoscopy revealed esphogeal candida (from anti biotics? prednisone for TED? PTU? large amts of Vit D prescribed by endocrinologist? I got fluconozole and special diet for a month and it got better. Came back again 2 months post surgery for back surgery. Had orbital decompression in May 2011, so that means twice I had general anesthesia within a 12 month period so that could be culprit.
anyway, there is a new diet that had some clinical research behind it out of New Zealand. My gastro enterologist gave me a copy and I did online research. It is called FODMAPS and you do it for one month. Very limiting diet and then you add back one food group at a time, including the lactose group. Go online to see what is allowed and not allowed. BTW, sharp cheddar is allowed as the amt of lactose in it is miniscule, butter too. It did not really work till they added in Xifaxan, an antibiotic given for travelers’ diarrhea. This is an off label usage for me with the hypothesis tht something I am taking is causing small intestine floral overgrowth. This, along with low lactose diet, had helped. Hurrah.
My experience with Graves is that everything they do for you to make it better causes another problem, so just be aware that there may be things other than lactose intolerance alone. There are breath tests for this floral overgrowth and stool tests for the candida. None of this may apply to you but I hope that it is helpful.
In my last post I asked about surgery for strabismus. Now the ophthalmologist is talking about me being able to skip this surgery since my instances of double vision are sporadic. I wear glasses with 4 prisms in them and have had my eyes checked and rechecked and rechecked by my trusted optometrist, who is very thorough, and my vision has remained the same through the almost 2 years that I have had TED. 4 prisms is sufficient he says. I have not had to change glasses in the 2 years.
The ophthalmologist is now talking about a botox injection instead of the surgery on the nerve for the remaining double vision.
Has anyone had any experience with a botox injection? I do remember this being mentioned at the conference in San Diego in 2010 but my notes on this are sparse.I am doing a search on “botox” for strabismus. I have read the posts from 2010 from Shirley and Blessings and wonder how this all turned out. I had OD in May 2011 and it was very successful. Most of the double vision disappeared for about 6 months. The ophthalmologist to whom I was going to discuss the next phase–the muscle surgery told me after three visits that I likely do not need it and wants to discuss a botox injection instead. I decided to search this forum before the full web about this because I got such good advice from this forum before the OD surgery.
Has anyone had botox in lieu of muscle surgery? Please let me know if you did and how it turned out. I am now having some recurrence of the double vision–just the past two weeks. I do have prisms in my glasses and they have done the trick most of the time, but I am hoping not to have to do the muscle surgery.
Both the ophthalmologists say I am not in the inflammatory stage and as of my last visit in December my measurements were stable, but I had a major back surgery in November–5 hours in the prone position and that may have caused some minor set backs.
in reply to: off of PTU!! Is it possible to have w/d from it? #1063473I had been on 150MG ptu for 9 months when my numbers improved so much my endo started withdrawing me. I sustained my numbers on 100mg but when I got to 50, they started to go out of range and by the 2nd blood test were way out of range. He put me back on 100, but since I was scheduled for decompression surgery of the eyes, he raised it to 150 again in May. My antibodies just came back as double were they were in Dec, though still 1/3 down from where they started. I did not notice any symptoms when I was down to 50mg, but fatigue. I had extreme fatigue all the time and would just dose off sometimes if I laid on the couch to read. But not what you describe. Are you taking anything else?
You have answered a question of mine, though, inadvertently, and that is how long to stay on the meds. I have now been on for over a year and my numbers, tho better are not what they should be. I know how hard it is to get to the right place even with RAI or thyroidectomy. I now the two latter procedures then bring years of the opposite problems and constant adjustments of the synthetic hormone. It is such a bummer.
My only hope is that I do know two people whose problem just disappeared with time and I am crossing my fingers that that will happen for me. Maybe for you, too…Lauraine
This is sparerib (Lauraine) again. I think S. is the person I sat next to at the banquet. From Seattle. If that is you, I have been tearing up the house looking for your number. I have all my notes, etc, but your number somehow got misplaced–if this is you.
The neighbor came and put pillows under the mattress and there is at least45 degrees of elevation. I know it will be hard to sleep cause I once tried a wedge and threw it out. But if push comes to shove, I will sleep sitting up as I did after stomach surgery. So again, thank you for the tip.As for the pain, I use hydrocodone for other pain, so I have it in the house and do not know what he will offer. I DID have a CT scan at the doc’s request and he looked at it last week. I did not know to ask about an ENT. I have never had a sinus infection but I will take some nosedrops before the surgery if he says it is ok. That will keep the sinuses clear. I do not know the mm he plans to decompress as I did not know to ask that. Actually, I was so stunned when he said it was time, as I thought my eye had gotten worse, that I lost my composure. I did take a question list to the pre-op but did not have your great posts at that time, so maybe I can ask this right before the surgery.
Were yours done under general anesthesia? Were you hospitalized? This is same day surgery and I have a 65 mile drive to get home. I will not be driving, of course. I have a very round and long sun visor as we will be driving into the sun going west and the photophobia has been very difficult for me but I can lie down in the back of the car if need be.
Is light sensitivity a problem during recovery? Once recovered does the light sensitivity get better?
Thank you a million million times for this information. I got it before the surgery because they postponed it until the 18th so I am today trying to cover all my bases.
I am right now going to put stuff under my mattress. I had been looking for an adjustable bed for a while but never got around to it and that was for another reason. I shoulda but didn’t. This tip is wonderful. I will be a good icer and am planning to keep frozen peas and chestnuts (they really fit well into the eye area) in a cooler in my bedroom so I do not even have to go downstairs.
snelsen wrote:I hope this is not too late for your appt. I am putting my answers and experiences after the question, then you can match it with what you hear and/or forgot to ask.
1. How long do I need someone with me?
I had a friend with me for 4 days. Helpful because she changed the cold packs, did all the cooking. We went out for Thai food the day after surgery.
2. Can I go for a walk the day after surgery if I feel like it?
I felt good, so we walked around the block. I was more than ready to get back in bed.
3. Can I see with my eye right away? Can I read?
u]Because of all the lubricant, and because I had cold on my eye a lot of the time, reading was hard for those two reason. But c[ould easily check my email, and I wrote about my OD before and after. Use the search engine to see what I wrote.[/u]
4. How long do I elevate the head of my bed?i]
It is my experience that pillows do not work at all. If your head is elevated, the swelling is minimal. IF you don’t it can be pretty signifi[cant.[/i]
5. Will it be apparent right away that my eye is not as bulging?
I could tell immediately, and my vision was better immediately. It kept getting better as the swelling went down
6. How long do I want for the final result and all healing to happen?
They said 2-3 months, but I was pretty much "better" and not thinking of myself in recovery mode at 6 weeks.
7. What should I call you about?
Decreased vision that is not because of swelling and ointment, or anything that you want checked out because you don’t know. And bleeding.
8. Is it very painful?
It was uncomfortable for a few days, but I did not take anything for pain. The minute I did not elevate my head, or stopped putting cold compresses on, the swelling increased, and then it did hurt more.
9. Can i eat anything I want the day of surgery?
10. How important is it to elevate the head of the bed?
In my opinion, it is super, super, important. It kept the swelling down,thus I was much more comfortable, and also I could see a lot better. SUGGESTION-I put pillows, many of them, and foam rubber stuff I had, UNDER the mattress, between the box springs and mattress, therefore raising head of bed to about 45 degrees, all the way across the bed. Get this ready before the surgery and sleep that way for a few nights. Definitely not the best sleep you will ever have, but then you do know what it will be like.Do write, hope you get this before your appt.
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