[azroses2322]

in reply to: 25 mili on Wed…excited and scared all at the same time #1071651

Also stock up on drinking water and ice. They want you to drink lots of water on those days following taking the"pill".

[azroses2322]

in reply to: Eye surgery #1072612

Hi, Ladies, I don’t know if my experience helps but I throw it out there in case any of this helps. The only surgery I had where it was totally general (I was totally out was the strabismus one — which is eye muscle surgery) and I was glad that was total after reading a bad experience someone had where the doctor claimed the failure was because th patient moved. I doubt that the extent of that surgery would permit local very easily. Anyway all of my lid surgeries (5 of have been mostly under local). Basically they knock you out for about 5 minutes while they numb the lid then you are awake and under local. Actually I was wrapped in what the nurse called a burritto. My arms at my side and the blankets snug around me. They put a cornea protector over your eye (at least the one they are working on when it is not both) so you see a fog and can hear. I have had both uppers lowered, then the rt lower raised, then the left lower raised, then a 2nd attempt at raising the rt. lower, then an adjustment to reform the rt upper. All of my surgeries were covered by insurance because I could not close my eyes and it was a health risk. The last one last Mon. to adjust the rt upper lid was also covered because when it was lowered it sagged down and was obstructing my vision. The raising of the lower lids was done by using paracardium cadeavar implants to rebuild the struts of the lower lid — there is no muscle left from the disease. An alternative was to use ear cartilidge but even though it is stronger, it is thicker and can make the lower lid too thick when looking down — so my Othorplastic eye surgeon says he had better results with the paracardium and he stuck with it even on the 2nd try on the rt. eye. So far they are holding. When they do these surgeries, he says they adjust conservatively so that they do not over correct and cause more problems. The upper surgeries were done by an incision along the outer upper lid in the crevice where the top lid tucks under the brow — In that incision they can adjust the levelator muscle. The upper lids are so critical to cover you eyeballs because there are tear producing glands under them that work with the tear producers on the surface of the eyeball to create the eco-system for your eyes. Your bottom lids are critical because they form the resavoir to cup the moisture so that when you blink you can bathe your eyes. If the bottom lids droop then the moisture runs down your face and your eyes may not close. This is mostly lay terms from my experience. If you are concerned about your doctors approach or your insurance coverage of his approach maybe you want to get a second opinion. If I were you I would call the insurace to find out why they are not covering it. It may be another method they will cover.

[azroses2322]

in reply to: Being near electronics after RAI???? #1071689

I asked that question because I wanted to be able to telecommute on my WORK laptop during the isolation and after.
They said it is not a problem to the electronic (I too was remembering the days when you could not get a magnet close to computers, etc). The RAI I got had a halflife of 8 days (from what I read that means that the dose of RA in me was cut in half every 8 days and after a few 8 day intervals, it is negligible)– So the only thing they said to think about with the compter or any surface you touch , is that the radio activity could come through the sweat in your skin at the dosing of the halflife intervals. So someone touching the computer keys or any surface I touched (with any bare skin) could get some. Since no one else would be touching it for the life of the Ra they gave me, even that was not a concern. I was still going to wear gloves, but could not stand them — they made my hands sweat all the more. I just confined what I touched bare handed and barefooted to the upstairs and washed down all touched surfaces when I was done (no one would be using our upstairs rooms anyway for long enough for it to deteriorate.) I washed all of my linens and clothing separately afterwards. These were all part of the instructions they gave me. They said it can come out of your sweat, saliva and other body fluids. They said to flush the toilet twice each time you go.

[azroses2322]

in reply to: red burning eyes #1071780

Do your eyes close?? If not that may be something to consider with your eye doctor. If you still have pressure behind your eyes and/or your eye muscles are weakened or impacted, you may be able to force them closed but when you sleep, your muscles relax and they may be popping open, even a crack may be allowing air in to dry them out — have someone check them while you sleep. If they are not closing or staying closed all the way, use PM ointment and a mask and do not allow air movement in the room (such as overhead fans). I have had to turn the air up in the summer and go without a ceiling fans. Also if you live in a dry climate use a humidifier. You may also want to get safety glasses that fit closely to keep air and wind out of your eyes when indoors and add optha. (the kind they give you after eye surgery) sunglasses that fit over them when outside — it is amazing how much air movement there is when it is not a windy day when your eyes are sensitive to it. I also use the safety glasses to dry my hair and to open the oven door. Your optham. should be able to look at your eyes and tell you if they are drying out.
You said you had surgery to get rid of the puffiness under your eyes, do the bottom lids still form a cup for the moisture that your eyes do produce or that you put in?? My lower lids dropped and so all moisture I put in (lubricants every 15 minutes) would run down my cheeks. I had surgery to rebuild my lower lids. But prior to that, I got great relief by having PUNCTUM Plugs put in the lower ducts so that the moisture would go to my eyes instead of down my sinuses, until they could rebuild the lower lid struts. Also, you may want to check into the restasis — could it be causing some of the problems, you say it doesn’t seem to help — you may want to discuss that with your doctor. My doctor kept trying to give me a prescription for restasis but the insurance would not allow it because they require a systemic dry eye diagnosis (where the eyes no longer are capable of producing tears) and my diagnosis was dry eyes due to Thyroid disease in other words it was disease caused, not a system failure (or something like that in the medical fine-lines) — not the same thing. Also be aware if you do get Punctum plugs and you see a restasis add or go to their web-site — it says there is no tested benefit by using Restasis with punctum plugs. It is funny that you mention pink eye, because that is what my original PCP and first Opth. thought I had until they diagnosed Graves and realized it was TED — I never did have pink eye. As implied, in the early stages of trying to find out what was wrong with me, I changed doctors a lot until I got with the right ones that could deal with my symptoms and treat this disease.

[azroses2322]

in reply to: Eye Muscle Surgery #1071836

Hi, I had Eye Muscle surgery (Strabismus) on both eyes in March of 2008. Prior to the surgery I could not look up and my eyes were un-even and I had lot of eye fatigue. When I got out of surgery and was taken home I had a lot of ointment on my eyes and could not see much. That continued to the next morning. When I opened my eyes and got the ointment off, I had total double vision, I looked at the TV (while still lying in bed) and there were 2 of them — one on top of the other. I freaked out and called the doctor (I was still in bed), he said it is normal to have some double vision for up to a week. I had to use a patch on one eye or the other (fortunately I had one nearby so I could even get out of bed). I got better day by day and in a week it was fine. After recovery, the eye fatigue was improved and I could look up again. The side to side tracking was improved. (I still have some double if I look far up left with both eyes). My surgeon is now checking me annally (since last Oct.) for the alignment. It took time to heal and adjust. The doctor that did the surgery warned me it will probably take 2 tries to get them perfectly aligned but he actually got them aligned the first time. I did have some issues with the stitches in one eye but he took care of it. He actually had to remove the left eye stitches instead of letting them dissolve. This surgery did make my lower lids droop more and they said that is normal so that may be something that you want to ask about before the surgery. The surgery was well worth the risks and the recovery — without it I would still be greatly impaired and they had to do this one before they could begin to fix my lids to protect my eyes. By the way I was also told in this one they used a general anesthesia (you are totally out so you can not move). I hope this answers your questions. If not, please let me know.

[azroses2322]

in reply to: What’s next #1071797

Welcome Kimmer, At this point, I recommend that you familiarize yourself with the symptoms of Hypo so that when they come you can recognize them (and not blame then on something else).I am older than you and went through the same thing and was glad that I had learned the hypo symptoms beforehand. When you go for your labs, get a copy so you can also track and understand what they mean for you with the symptoms you are feeling — I found this helpful so than in the long run I can tell if I am starting to go out of range. Once you have gone hypo and they are satisfied, the time is right, they will start your replacement regime. Once they start the replacement then there is a journey to regulate your dose. It takes about 6 weeks on each dose to see where you are before they can adjust it again to get you on the right dose. So it may take a while to get your dose correct or they may hit it right away.

[azroses2322]

in reply to: eye and skin trouble #1071774

Hi Reneedrew, Your posting in response to Anniekate, sounds so much like where I was at a little over a year ago so I wanted to respond with what I learned, this may also help Anniekate with regard to her eye issues relating to Graves. I agree, I could not get much info from the doctors in the form of what to expect and when. As you read my experience please remember everyone is different – you need to make informed decisions with your doctors. Also that Graves eye problems and their options for correction will vary from person to person and the results will also vary and even vary from eye to eye in the same person. First of all, I believe your doctor is correct, there is probably no responsible eye surgeon that will touch your eyes until the swelling behind your eyes goes down and your thyroid is under control for at least 6 months – no matter which route of thyroid control you have chosen. I did the RAI because my eyes were so out of control and everything was happening so fast. I had gone into thyroid storm and it was becoming critical, even life threatening. I wanted my thyroid out of there and they would not surgically remove it because they said that would kill me – so RAI was the best way to go – for me. As for the eyes — I hear and feel your frustration. I have been there and no matter how much noise I made and complained about my eyes they would not and COULD not do anything until there were sure the swelling behind them was down (meaning the bulging had stopped progressing and they had sunk back in as far as they were going to) after the thyroid was under control. I was told up front with regard to the bulging, 90-95% of the time they will sink back in. Being told your eyes have to wait for the optimum time did not help me and probably does not help you now. I hear you say “I don’t care”, but remember you do not want to make it worse by having someone trying to fix a MOVING TARGET and until the impact to your eyes settles down that is exactly what you are dealing with. Until then, please concentrate on protecting your eyes. I learned a lot of survival skills for my eyes. If you have not already found it, please look at my response to the posting from 4/9/09 from lakeview, titled,“How bad is bad eyes?” . In my response which is on the 2nd pages of list of responses, I shared (in 2 responses – there is a long one and a short one) some of the things I learned about how to take care of my eyes from my doctors and health coaches and others that had survived this. I had the bulging, the dryness, the sensitivity to light (I did not drive at night for over a year), my upper and lower lid receded so that all the white was exposed and I could not close my eyes (the rt eye worse than the lt), watery eyes (from the dryness) and along with all of this there was a lot of eye fatigue failing vision (blurry and double vision), and I could not look up or track side to side. And then on top of all of this, my eye pressure begin to increase (Glaucoma) – we hope is Graves related and that it may recover. All of my eye problems had started in May 2007 with puffiness in the mornings around the eyes and progressed from there through all the phases and stages of Thryoid eye disease. My eye symptoms finally led my PCP to send my to ER and led the ER doctor to diagnose Hyperthryoid and 5 days later I was back in thyroid storm. The eyes along with the physical impacts of the disease left me deformed and disabled – I was so weak later in the year after extreme hypo thryroid, I could not climb the stairs and had to hold onto the walls to get walk around. All along with my eyes, I was literally afraid I was going blind. When I went into Thyroid storm , they diagnosed Graves with the uptake test and then did the RAI that was in June 2007. I was seeing an Opth because of the early symptoms of puffy eyes (starting in May) and once he had the Graves diagnosis, he began the monitoring of my eyes with that diagnosis. He had me on Lotemax and he kept checking the swelling behind they eyes and checking the pressure in the eyes. He also monitored the dryness and watched out for any cornea damage. He taught me about lubricants and how to take care of my eyes until all of this was under control. My Endo would/could not address my eyes only the thyroid and my PCP left everything up to the Endo and the Opth. So my Opth was my lifeline for eyes. The things I listed in that other posting were what I learned as survival skills, my situation was so bad that I literally had to withdraw into a controlled environment to save my eyes – everything affected them and I had a lot of eye fatigue to the point that when it was at it’s worst, I was spending 12 to 14 hours out of every 24 hours shut down with ointment and a mask. I was able to continue to work by telecommuting and I had no other life, just work and protecting my eyes 24/7. By Dec 2007, I had gone from Hyper and thyroid storm thru RAI and thru extreme Hypo (they let it go way too far) and then been put on replacement in Sept. and finally (in Dec.) had gotten my first normal thyroid level lab reading. My physical condition was devastated, from the impacts of the disease, but all I cared about was my eyes. In Jan. 2008, my Opth. asked if I was ready to look into surgery — the swelling had gone down and the bulging had receded (as far as it was going to go) and I was 6 months post RAI (they killed my thyroid) and my endo confirmed it with ultrasound. Back to the eyes: If you want to see what Graves can do to your eye muscles, I recommend that you order Bulletin #12 from this site – titled “Anatomical Pictures of Normal vs. Graves’ Eye Muscles”. It really shows why your eyes are bulging and hurt. It was an “eye opener” for me to see this – I said “no wander they hurt”. From my experience and the options I was given working with 3 Opth. eye surgeons, I have concluded that the eye surgery options to fix the impacts of this disease that I investigated were in 4 areas: 1. Orbital decompression (which I did not have since mine had sunk back in far enough for my facial structure, even if they are not as deepset as they originally were). 2. Strabismus (to fix the eye muscles so that you can move your eyes and they track evenly side to side). 3. Lower the upper lids that have receded upwards – without upper lids my eyes were not getting the benefit of the tear producing glands under them. 4. Raise the lower lids (they have to rebuild the struts of the lower lid where the muscles were destroyed by the disease – they use implants to do this). Without lower lids, all the moisture my eyes can produce or I put in my eyes just ran down my face. Prior to the surgeries, they put in PUNCTUM Plugs (lower only) and they helped tremedeously. I still have them. I have now had 6 eye surgeries and I have 2 surgeon specialists (in addition to my main Opth) that have performed the 6 surgeries according to their specialty: 1. Strabismus was done by a pediatric eye surgeon, and surgeries 2 -6 done by a Opthoplastic (sp.) eye surgeon (he does cornea transplants and eye plastic surgery). I live in a large Metro area and still have to travel across town and go out of Insurance network to get the second surgeon with the speciality and experience with Graves. With each surgery, the doctor told me of the risks and it is a lot including the one that scared me the most (blindness) and he warned me that he will make the adjustment on the conservative side because it is easier to add a little more if needed than to correct in the opposite direction – also there is more risk with each redo because of scar tissue (so this brings us back to the start of this response — why they do not address eye surgery until you are stable). My first surgery was March of 2008 and my 6th surgery was Monday (April 2009) of this week and I am hoping it will be the last. I kept a picture diary of each phase of my Thryoid Eye Disease journey – the bad and the ugly (the good was the pre-Graves pic). It started by accident because I could not believe what was happening to me and then I continued it when I found it helped my see the progress and gave me hope. If you want any more details or information about my experiences (eyes surgeries or anything), please let me know. Please take care and realized there is light at the end of the tunnel it just takes longer than any of us want.

[azroses2322]

in reply to: 13 years later and now eye problems????? #1072010

Going to a different Opth.that understands Graves sounds like it would be worth it even if it meant a little travel. Your eyes are nothing to mess with or postpone. If you have one you can get to, consider it — you will at least be relieved to get answers on your condition and if it is Graves, he will be able to treat you or get you to treatment. One thing I found is that when it comes to surgery for eye correction, it is important that your primary Opth. knows where to send you — the corrections take different kinds of surgical specialites so I have 3 Opth. In the meantime, if I were you, I would still use OTC lubricants if you have dry eye problems — as my opth. told me — it sure will not hurt. If your pressure is up, it is even more urgent to see a GOOD Opth. I also have Graves related Glaucoma and have to be on drops — I have minor permanent damage to one Optic nerve from before it was found and brought under control.
I am having my 6th eye surgery on Monday to repair my eyes and lids from the ravages of TED. I have to travel out of my insurance network and across town to get treated (office visits and surgeries) — it seems the doctors that can treat this are few and far between. I am convinced that both of my eye surgeons and my primary Opth. are the best. So for me travelling was worth it and has become a way of life.

[azroses2322]

in reply to: need help being patient #1071944

Dear Emily, The shortness of breath and trembling all over could be a serious concen — call your doctor or go to ER — they can check your level on the spot and call your Dr if you need level or med changes — please make sure you are not in thryoid storm or any other life threatening state. Stressing could make it worse. You mention that you will have blood drawn tomorrow and see the doctor on Tues, it sounds like you need it now. Things can change so fast with the disease that sometimes you cannot or should not wait for a doctor’s schedule. Please take care!!

[azroses2322]

in reply to: how bad is bad- eyes? #1072164

You are welcome.
I just want to point out a couple of things — with regard to the blurriness — I was prone to not use enough lubricants but once I kept my eyes lubricated constantly, I would have windows of clearer vision. I remember the first glimpse of hope I had after months of blurry vision where the TV images were always blurry and I could not read the words on the screen from the chair 7 ft away. All of a sudden one time the blur clear, I stated to my husband –"OH WOW, IT IS SOOOO BEAUTIFUL". I was afraid to blink or even look away. It blurred again a minute later but I saw hope. Sometimes one eye was clearer than the other. So I learned to work with the lubricants and cherish those visions of clarity. My Opth. said these are all OTC’s and you can use them as much as you need.
With regard to eye pain — I learned that with Graves eye disease since the eye muscles can swell 8 to 10 times their normal size and become rubbery, it is painful to move your eyeballs, what we took for granted pre-Graves TED, is now a struggle and an effort, just moving our eyes. I would have to rest my eyes when it got bad — ointment and mask and and go into "shut down" for 30 min to an hour to be able to continue, my day or evening. Once I stablized (post RAI and on replacement) and was able to start surgeries, the first one they did was strabismus — this one helped the eye fatique tremendously. So eye pain and fatigue is something I had to learn how to live with and accept as a physical limitation.
Where, in the beginning of my journey, what was happening to my eyes stressed me to the max (probably more than what was happening to the rest of my body), I had to concentrate on managing my symptoms and care for and know that each day I was getting closer to coming closer to a brighter day. Once my attitude changed, I started to heal quicker. My ins. health coach could even hear the difference in my voice. I took control instead of letting the fear and anger with the disease control me.

[azroses2322]

in reply to: RAI #1072252

Thank you Mickey for the info, I should be OK since I was regulated on generic. The brand of generic I got with the 100 quantity is different than the original generic I was regulated on (since I went to a different pharmacy), so I hope there are not variations with generics.

[azroses2322]

in reply to: Chest pains #1072096

I too had chest pains like nothing I ever experienced before. It was about 6 months before the more obvious hyper symptoms manifested themselves and 10 months before I was diagnosed. I tried to ignore them most of the day they were ocurring. I was walking thru a store and kept grabbing my chest though, they were that bad. Late that afternoon I tried to lay down and I could not lay on either side without them increasing and intolerable pain. I called my doctor oncall and my health coach, both said to go to ER. I did and they kept me overnight but said it is not my heart therefore it must be muscle skeletal, I had not done anything to pull a muscle in my chest. So I was left puzzled. I followed up with my first stress test and labs. My TSH was not out of range at that point at least on the day of the lab work a few weeks later. I often wandered if these initial chest pains had anything to do with the craziness of the onset of GD and if by the time they ran the labs I was in one of the swings between hyper to hypo or vice versa. Ski mentions costoconditis — is it related to GD? Since being diagnosed and regulated on replacement, with a normal range of TSH, there have been momenary minor chest pain twinges but nothing like the original and nothing like the palpatations of hyperness. After getting regulated I even had a ECHO done to make sure there was no heart muscle damage during the hyper phase and I have passed all of the cardio checks. I am reaching my retirement years and have a strong family history of cardiac problems so I am trying to be very careful.

[azroses2322]

in reply to: Something in on my eye? #1072091

I agree with hyperm, get to a good opthamologist immediately. You say you have had TED for a while and this is a new symptom. It could be something with your cornea. My opth. kept checking mine and if they were dry, I had to increase the lubricants and be more careful to keep out of air and up the humidity. I asked him what he was looking for and how would I know if I had a problem, basically to know when to get help between checks. He told me that I would have serious pain that I could not stand and if so to get in immediately or go to ER or urgent care. Take care!

[azroses2322]

in reply to: RAI #1072250

Regarding the price of generic synthroid, I just had the same experience, if I use my insurance, my generic copay is almost as much for 30 day supply, as if I go out side of insurance and get 100 pills. This is exactly what my endo recommended. I was able to get 100 pills of generic at WalMart of under $12 (outside of insurance). I am not sure if the price varies by dose, but it was surely the cheapest way to go.

[azroses2322]

in reply to: RAI #1072249

Hi, I also had RAI. It was the start of my recovery. I couldn’t wait to get started. For me the symptoms prior to RAI (hyperthryoidism) and my Graves diagnosis were far worse than after RAI. Once I had the RAI, I was put on the drug to rid my system of the excess, and gradually they tapered that off that med. Then I was taken of the beta-blocker. Then in a wait period to see how well the RAI did. I was told the goal of the RAI dose was to kill enough of the thryoid to make it normal function but that in most cases it killed it. Mine was killed. The doctor did a ultrasound and said it is in essence non-functioning — I actually felt — good ridance. Then I begin to go Hypo. I had studied the symptoms of hypo and couldn’t wait to get there after my hyper experiences. Once I was hypo enough, my endo started a dose of replacement hormone. It took a while of adjustments (checks were 3-6 months apart — not bad) to get the right dose for me but all of that adjusting was not bad at all. Now that I am regulated it is an annual check unless I feel I may need an interim — if I have any symptoms that make me insecure about my replacement level, I just tell my PCP that I have hypo or hyper symptoms and what they are, and he orders the lab and if there is an issue with my levels, he lets my endo know. I found that since I had been hyper and hypo, I can usually feel if I slip either direction. Being on replacement is not bad — once I got in the habit, it is the only pill (med) I am on that I do not forget to take. I have been told it is important that you take it as directed or you can have problems staying adjusted. For example, my Dad (85) is on replacement thryoid after thyroid removal due to cancer, and he was complaining all the time of some symptoms I knew were hypo, when I questioned him, I found that he was missing his pill quite often even days in a row, once I pointed out to him what the directions were and he went back to taking it regularly, he symptoms went away. Anyway, Good luck, and I hope you can research and make a decision that works for you and that you feel comfortable about. I only offer this since you asked for the experience of others.

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