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Post by elaine on Mar 14, 2015 2:54:59 GMT
No vent from me, but a huge "aww I'm sorry" to Elaine. I hope you get back in good health soon! Thanks, Elise! I have Grave's Disease as well and white definitely not as bad as you experience, it has caused problems with my eyes. One of my eyes looks bigger than the other and because it is pressed out, the eyelid doesn't close as tight as it should. I get massively dry eyes a lot. I got "lucky." My Grave's Disease was found out during a local health fair last April where they do bloodwork for cheap. On a whim I decided to go and the test results came back so off the charts wrong, they called me the next day and I started the process of being diagnosed before I had any symptoms at all. I was refered to an endo and had an appointment for a month later. My PCP called them and told them that wasn't soon enough. They scheduled me for four days later. Two days before my appointment, my eye started bugging out. My TSH level was so low, it wouldn't register. They said it was less than .0001. The endo told me I had to start meds to stabalize it and then would likely need to radiate my thyroid. He said sometimes the medication will help, but in extreme cases it rarely does. But I did respond to the medication and by December (so a little over 6 months after starting the meds), my level was over 23. I had been lethargic and just blah for months and had been steadily gaining weight. The medication worked so well that it sent me from hyper to hypo. We dropped my meds back and my last labs cae back at just over 17 (normal tops out at 6.270). So I was still hypo. We cut me back to half a pill a day (way down from the 3.5 I was taking at the beginning) and I go back in for blookwork next week. But even though my levels have changed, my eye still feels the pressure and I can't focus too well up close because of it. I hoped that once the levels got close to normal (or hell even swung the other way) it would feel better. None of that helps you, but I guess I wanted to vent too. I clearly remember you going through all of that last year. I'm sorry that they don't have your thyroid blocker meds down right yet. They cut my Synthroid down until we get my eyes under control and I'm dragging on the lower dose. Unfortunately, the eye involvement seems unrelated to what is actually going on with the thyroid. Some people never get it, others have it get better after the thyroid levels are under control, and for others it either shows up or gets much worse after the thyroid is removed. If you are having eye symptoms, you should be getting those treated regardless of what is going on with your thyroid levels. Mine went away for a couple of years, after I was being watched by both my Endo and an ophthalmologist and given glasses with a slight prism to correct the double vision. But they are back with a vengeance. You need to stock up on Refresh or Thera Tears and use them religiously to help keep your eyes lubricated, especially the bulging one. The military gave me a big supply. Believe me when I say that I am sorry for you too - it really stinks when your vision is affected, and when your eyes are continually irritated. Thanks- this gives me hope that maybe a regular dentist (cheaper than oral surgeon) will give me an anitbiotic to help with pain until I can get into a oral surgeon. elaine sorry for hijacking your thread with my mouth issues  I did receive useful info from posters so thanks for starting this thread❤ Do. Not. Apologize. You are not hijacking - this is a vent thread and I am VERY glad you are getting helpful info! |
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Post by elaine on Mar 14, 2015 2:56:06 GMT
I's sorry. That does suck. I have an autoimmune disease called Ankylosing Spondylitis which is basically arthritis in my hips and back. Some days the stiffness and aching are worse than others. Today has been a bad day. But tomorrow will hopefully be better. I'm sorry today has been rough. I hope your hips and back feel MUCH better tomorrow. |
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Post by freecharlie on Mar 14, 2015 3:00:37 GMT
I have them, but rarely think to use them. Can't really use them after putting on makeup and then I forget at night. I was really religious about putting them in last summer, but have slacked off. I should get back on it.
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Post by anonrefugee on Mar 14, 2015 3:01:52 GMT
elaine and freecharlie, thank you. I've been feeling eye pressure and rapid, wonky vision changes. I assumed it was age related and have procrastinated on dr apt. reading your experiences will light a fire to make an appointment! Maybe it is aging, but in case it's not I want to be pro- active! Thank you.
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Post by elaine on Mar 14, 2015 3:08:07 GMT
I have them, but rarely think to use them. Can't really use them after putting on makeup and then I forget at night. I was really religious about putting them in last summer, but have slacked off. I should get back on it. Yes! I am only wearing make up once a week now because of it. My eyelids are so puffy that I look like hell no matter whether I am wearing make up or not. Thank heaven my husband loves me no matter what! I have a wedge pillow coming tomorrow, because the doc wants me sleeping with my head elevated. Something else for you to think about. elaine and freecharlie, thank you. I've been feeling eye pressure and rapid, wonky vision changes. I assumed it was age related and have procrastinated on dr apt. reading your experiences will light a fire to make an appointment! Maybe it is aging, but in case it's not I want to be pro- active! Thank you. Please do! Vision is nothing to mess around with. |
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Post by Kate * on Mar 14, 2015 3:09:36 GMT
I'm sad this is flaring up and giving you grief. Eyesight is so precious and we need it for everything.
I hope things get better quickly.
(need more enabling, lol)
Nothing to vent about at the moment here.
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Post by annabella on Mar 14, 2015 3:10:41 GMT
Sorry!
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Post by kluski on Mar 14, 2015 4:12:58 GMT
Have they tried prisms? When I had double vision they put prisms in my glasses which helped a greatly.
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Why
Drama Llama
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Post by Why on Mar 14, 2015 9:22:13 GMT
It did help with the pain because I think the pain was caused by an infection. I'm so sorry you can't afford to sort this out- our dentist costs here can be high ,but dental surgery comes under our NHS system. I don't want to start a discussion on that because I have learnt from experience I will get the "why should I pay for YOUR health problems" attacks , but I am so grateful for the NHS- even though I have had to wait and had a couple of abortive appointments due to staff resigning the day before my op and my next referral passing me on to another clinic. As someone else on here said to me last summer- "dental pain- the stuff of legends!" . I was extremely lucky that the bouts of pain weren't constant and I had periods of relief in between. Thanks- this gives me hope that maybe a regular dentist (cheaper than oral surgeon) will give me an anitbiotic to help with pain until I can get into a oral surgeon. elaine sorry for hijacking your thread with my mouth issues  I did receive useful info from posters so thanks for starting this thread❤ Can you afford to go to a walk-up clinic? I have had off the chart tooth pain and was able to get a prescription for antibiotics there. I did have reg. med. insurance at the time but since it was dental related I had to pay full price for the doctor to scribble out a RX at the tune of $90. The next time I went to a walk-up and paid the flat rate of $35 for the same thing. |
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Post by eebud on Mar 14, 2015 14:29:53 GMT
I am sorry to each of you who are dealing with issues. I don't know much about Graves disease but anything that affects vision sucks.
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NoWomanNoCry
Drama Llama
Posts: 5,856
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Post by NoWomanNoCry on Mar 14, 2015 14:33:52 GMT
Thanks- this gives me hope that maybe a regular dentist (cheaper than oral surgeon) will give me an anitbiotic to help with pain until I can get into a oral surgeon. elaine sorry for hijacking your thread with my mouth issues I did receive useful info from posters so thanks for starting this thread❤ Can you afford to go to a walk-up clinic? I have had off the chart tooth pain and was able to get a prescription for antibiotics there. I did have reg. med. insurance at the time but since it was dental related I had to pay full price for the doctor to scribble out a RX at the tune of $90. The next time I went to a walk-up and paid the flat rate of $35 for the same thing. I will the following week be able to either go to a walk in clinc or a regular dentist. This morning the pain has eased up...sooooo thankful for that. |
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Post by elaine on Mar 14, 2015 21:01:04 GMT
Have they tried prisms? When I had double vision they put prisms in my glasses which helped a greatly. Yes, I wore glasses with prisms when I had eye issues a few years ago, but stopped when my eyes were better and now their position has changed again I will need different ones. Elaine, I'm sorry you're feeling so crumby today. I really hope you can get in to see a doc soon. My vision changed and I made an appt to get in to see the eye doc, but it was a couple of weeks before they could fit me in, so I walked around for a few weeks not "feeling good" because I couldn't see as well as I thought I should be able to. Vision and teeth issues are sucky. My vent? A 7th grade volleyball coach who wants to win AT ANY COST and has overstepped his bounds on several occasions and my daughter (and my husband and myself) just wanting to get through the season and be done with it all. I found out a couple of days ago, the team made it to the playoffs. Yay...not. Oh, ick! I hope that your daughter's team exits the playoffs early on so that you all can rid yourselves of the coach sooner rather than later.  |
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Rainbow
Pearl Clutcher
Where salt is in the air and sand is at my feet...
Posts: 4,103
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Post by Rainbow on Mar 15, 2015 20:38:08 GMT
My vent is that I have health insurance but I can't afford to use it! What good is that? It aggravates me that I'm paying for something and get nothing out of it.
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Post by elaine on Mar 15, 2015 21:05:49 GMT
My vent is that I have health insurance but I can't afford to use it! What good is that? It aggravates me that I'm paying for something and get nothing out of it. I'm sorry Rainbow - that is awful. |
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Post by freecharlie on Mar 15, 2015 21:48:05 GMT
My vent is that I have health insurance but I can't afford to use it! What good is that? It aggravates me that I'm paying for something and get nothing out of it. I guess I am not sure how this works. How do you have insurance, but aren't able to use it? (not being snarky, but looking for insight) |
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eleezybeth
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Post by eleezybeth on Mar 16, 2015 0:39:14 GMT
Tell me about it! And I don't even have a thyroid any more. They killed it with irradiated iodine a few years ago. Gah! I was "promised" the irradiated iodine would cure this nonsense. I really had no idea it would continue you to be the gift that keeps on going.... sigh... you learn the hard way sometimes. My vent- hair loss. WTF. And I have really super thick hair so it isn't obvious unless you compare and getting a male doctor to see that OMG yes it is a big deal!!! |
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Post by jenjie on Mar 16, 2015 1:20:45 GMT
Oh my! elaine does this happen from time to time and go away, or come and stay? It sounds debilitating. I hope you get some relief soon. |
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Rainbow
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Where salt is in the air and sand is at my feet...
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Post by Rainbow on Mar 16, 2015 1:52:28 GMT
My vent is that I have health insurance but I can't afford to use it! What good is that? It aggravates me that I'm paying for something and get nothing out of it. I guess I am not sure how this works. How do you have insurance, but aren't able to use it? (not being snarky, but looking for insight) |
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Post by freecharlie on Mar 16, 2015 1:58:38 GMT
I guess I am not sure how this works. How do you have insurance, but aren't able to use it? (not being snarky, but looking for insight) ah, that makes sense that does suck |
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Post by elaine on Mar 16, 2015 14:20:08 GMT
Oh my! elaine does this happen from time to time and go away, or come and stay? It sounds debilitating. I hope you get some relief soon. Hi Jen! Graves is an autoimmune disease, so it can come and go. The immune system starts attacking thyroid tissue, for some reason seeing it as dangerous, causing the thyroid to go into over-drive. Interestingly, the tissue around your eyes is similar to thyroid tissue, and in many people with Graves the immune system also attacks the tissue around the eyes. Some people have no further issues after having their thyroid removed/irradiated out, others have eye involvement that comes and goes, and since you can't practically remove your eyes and the surrounding tissue, there isn't any ideal treatment other than steroids to try and suppress the reaction. It is a nuisance! I would like my eyes back to normal again soon. |
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Post by jenjie on Mar 16, 2015 15:10:41 GMT
Oh my! elaine does this happen from time to time and go away, or come and stay? It sounds debilitating. I hope you get some relief soon. Hi Jen! Graves is an autoimmune disease, so it can come and go. The immune system starts attacking thyroid tissue, for some reason seeing it as dangerous, causing the thyroid to go into over-drive. Interestingly, the tissue around your eyes is similar to thyroid tissue, and in many people with Graves the immune system also attacks the tissue around the eyes. Some people have no further issues after having their thyroid removed/irradiated out, others have eye involvement that comes and goes, and since you can't practically remove your eyes and the surrounding tissue, there isn't any ideal treatment other than steroids to try and suppress the reaction. It is a nuisance! I would like my eyes back to normal again soon. That stinks. I'm sorry. Praying you are feeling and seeing better quickly! |
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Post by gailoh on Mar 16, 2015 15:18:14 GMT
first...hugs to you...
my gripe is now lower back pain and not being able to bend down...so much for doing housework or at times tying my own shoes.
Will be seeing my doc soon so we can add this to my list of problems...grrrr
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Post by blondiec47 on Mar 16, 2015 16:58:10 GMT
My Graves Disease is back and attacking my eyes. It is very uncomfortable, not to mention issues with double vision unless I am looking at something straight on. I can't lie down on the couch and watch tv - I have to be looking at it with my head vertical. And, of course, since I am using military military medicine, I had to go first to my PCP and get another referral to Endocrinology, even though I have a lifelong Endo disorder. I have another week until I can see an endocrinologist, who told me on the phone to keep using Refresh eye drops until they can fit me in. Graves Disease sucks. I know that there are many worse diseases out there, and so I am fortunate, but the eye thing is distressing, and steroids are the main treatment, which will make me gain weight. I'm ticked off. Wah! Pity party for one here. What is your vent for the day? So sorry that you are having all these issues. Me Ex DH had Graves really severly, mine is rather mild (it goes in and out of remission frequently-which is why they had such a hard time diagnosising it) It does suck and many are not aware of it or the symptomns |
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Post by mellyw on Mar 16, 2015 17:14:15 GMT
I try not to vent too much, but one of my chronic conditions is acting up, & it's one that makes me fruity.
Costo-chondritis making me feel like I'm having a heart attack. When it first starts acting up, I get so anxious, even though I know it's the Chondritis. When it hits, I have to literally not move around. It's usually 2-3 days of contained movement, heating pads galore & I'm O.K again. But those 2-3 days suck. I've had the Chondritis for a couple years now & I know the only way to calm it down is rest. This is the first medical condition I've had that requires basically bed-rest, & I'm not good at that. When life gets busy & hectic, the thought of laying around for a couple days sounds great. Being forced to, not so much.
Dental pain, man it is awful. That includes the hit to the pocket book!
Elaine- I don't have thyroid problems, but several other Auto-immune diseases. Is your DH Active Duty? I swear I've found Tri-care easier to deal with since my DH retired.
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pridemom
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Post by pridemom on Mar 16, 2015 17:53:36 GMT
I try not to vent too much, but one of my chronic conditions is acting up, & it's one that makes me fruity. Costo-chondritis making me feel like I'm having a heart attack. When it first starts acting up, I get so anxious, even though I know it's the Chondritis. When it hits, I have to literally not move around. It's usually 2-3 days of contained movement, heating pads galore & I'm O.K again. But those 2-3 days suck. I've had the Chondritis for a couple years now & I know the only way to calm it down is rest. This is the first medical condition I've had that requires basically bed-rest, & I'm not good at that. When life gets busy & hectic, the thought of laying around for a couple days sounds great. Being forced to, not so much. Dental pain, man it is awful. That includes the hit to the pocket book! Elaine- I don't have thyroid problems, but several other Auto-immune diseases. Is your DH Active Duty? I swear I've found Tri-care easier to deal with since my DH retired. Melly, that stinks. My complaint is that I have really bad tendon inflammation since January and my elbow freakin' hurts! Its useless. It's making me crazy. |
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Post by songbird on Mar 16, 2015 18:24:37 GMT
I'm sorry you're experiencing issues with your eyes. I'm also sorry you have to jump through insurance red tape in order to get some more permanent relief.
I hope that things do not get any worse for you while you are awaiting your appt.
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mimima
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Post by mimima on Mar 16, 2015 18:26:22 GMT
I'm sorry
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Post by jeremysgirl on Mar 16, 2015 19:18:21 GMT
Gosh, I am so sorry for all the peas dealing with chronic illness and tooth pain. I am sick of PCOS. It is making my hair fall out right up front. It's gotten so bad that I have broken down and started using Rogaine to see if it helps. My hair is so thin and so fine, it is easily noticed.
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Post by elaine on Mar 16, 2015 20:04:00 GMT
first...hugs to you... my gripe is now lower back pain and not being able to bend down...so much for doing housework or at times tying my own shoes. Will be seeing my doc soon so we can add this to my list of problems...grrrr Gailoh, I hope your back feels better soon! Isn't hard to make time to take yourself to the doctor? I drag my kids to appointments galore, but taking that time for myself is incredibly hard. I try not to vent too much, but one of my chronic conditions is acting up, & it's one that makes me fruity. Costo-chondritis making me feel like I'm having a heart attack. When it first starts acting up, I get so anxious, even though I know it's the Chondritis. When it hits, I have to literally not move around. It's usually 2-3 days of contained movement, heating pads galore & I'm O.K again. But those 2-3 days suck. I've had the Chondritis for a couple years now & I know the only way to calm it down is rest. This is the first medical condition I've had that requires basically bed-rest, & I'm not good at that. When life gets busy & hectic, the thought of laying around for a couple days sounds great. Being forced to, not so much. Dental pain, man it is awful. That includes the hit to the pocket book! Elaine- I don't have thyroid problems, but several other Auto-immune diseases. Is your DH Active Duty? I swear I've found Tri-care easier to deal with since my DH retired. My dh retired a year ago, but since my kids' psychiatrist is at Bethesda, we decided to stay on Prime and continue to get all of our treatment at Walter Reed / Bethesda, so it is the same as it was a year ago when he was active duty. So, I still have to deal with the whole Tricare referral system, but when I do get in to see someone the care is very good. I am sorry you are dealing with Chondritis - I would not handle periods of bed rest well either. I would end up feeling more stressed in the end. |
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Post by elaine on Mar 16, 2015 20:09:47 GMT
My Graves Disease is back and attacking my eyes. It is very uncomfortable, not to mention issues with double vision unless I am looking at something straight on. I can't lie down on the couch and watch tv - I have to be looking at it with my head vertical. And, of course, since I am using military military medicine, I had to go first to my PCP and get another referral to Endocrinology, even though I have a lifelong Endo disorder. I have another week until I can see an endocrinologist, who told me on the phone to keep using Refresh eye drops until they can fit me in. Graves Disease sucks. I know that there are many worse diseases out there, and so I am fortunate, but the eye thing is distressing, and steroids are the main treatment, which will make me gain weight. I'm ticked off. Wah! Pity party for one here. What is your vent for the day? So sorry that you are having all these issues. Me Ex DH had Graves really severly, mine is rather mild (it goes in and out of remission frequently-which is why they had such a hard time diagnosising it) It does suck and many are not aware of it or the symptomns I am sorry that you have it too. It is interesting how some couples both come down with Graves, like George HW and Barbara Bush when he was in office. I think even their dog came down with it too. Gosh, I am so sorry for all the peas dealing with chronic illness and tooth pain. I am sick of PCOS. It is making my hair fall out right up front. It's gotten so bad that I have broken down and started using Rogaine to see if it helps. My hair is so thin and so fine, it is easily noticed. ugh! That is frustrating! My hair was falling out with my Graves - my hairdresser noticed and remarked on it before I knew something was wrong. It is thicker now, but will never be the same. I hope that the Rogaine helps! |
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I did receive useful info from posters so thanks for starting this thread❤
