[shasha]

in reply to: Uncaring husband(have to share) #1178118

Hi Karen –

I’m so so sorry – You are not alone. This disease is hard enough to deal with in ideal circumstances and uncaring or even ignorant people do not help.

Even if we can blame abusive acts on their “frustration” with the illness and feelings of inadequacy in not being able to help – it doesn’t alleviate the pain that it causes us each time that something like this happens.

I agree that it is abusive – however I don’t know your personal circumstances. Not everyone can just “walk out” of a situation. My spouse is also not interested in educating himself. He is feeling like a “victim” because his normal way of life has been interrupted by my inablility to function in the same way that I have for the first 25 years of our marriage. It’s selfish. It’s foolish. It’s even abusive – but I’m not in a position to walk out at this point given financial difficulties, dependent relatives, grandchildren, work issues – too many to count or explain.
What I’m getting to here is this:
You have to protect yourself. If you are in physical danger- of course you must leave.
If the abuse/mistreatment is more subtle – you have to make a decision about whether it’s more damaging to stay or to go. Only you can make that decision.

I don’t have all the answers but one thing I have learned is that no one can hurt you verbally if I you hear them with the right frame of mind. By that I mean – I now hear his words through a filter of his self-pity and his selfish quest for the “way it used to be”. Once I understood the motivation for his actions, it helped me immensely. It did little for the way I feel toward him though. I think it’s sad, cowardly and incredibly selfish to treat another human being in that way – and sadly those qualities didn’t come out in his personality until we had to deal with this illness.
I hope things improve for you in every way and will keep you in my thoughts and prayers. You deserve to be treated with kindness and with love.

[shasha]

in reply to: TED again? Double vision again? Not sure I can do this again #1178178

Hi Shirley – So very sorry to hear that you are having this problem again. My heart goes out. It has to be extremely scary and frustrating after so long and post surgery.

A question – Have you had some unusual stress lately? I’m asking this because
I haven’t been on in a while (hot phase apparently ending) and I’ve been trying to adjust and start planning for the next step; However, there has been a sudden influx of extreme stress (family, work related) and my symptoms have returned with a vengance. Double vision early and late are the same thing I’m experiencing.
I have found a good opthalmologist (finally after a year of searching) and have a plan for beginning surgery in about a year – but am terrified this latest setback may nix that.
Does anyone else have experience with stress related setbacks?
Again Shirley – so sorry to hear this – keeping you in my thoughts and prayers.

[shasha]

in reply to: Taking Levoxyl and Prevacid. #1176521

Hello all –

Wow – I am just stunned to read this. I have GERD and have been on PPI (prevacid, aciphex,omeprozole) for years and have had severe Potassium, Calcium and Vitamin K deficiencies. Not one person (including GP and pharmacy) has suggested that the proton pump inhibitors could be interfering with absorption. I am currently taking a prescription potassium and Vit K. I plan on mentioning all of this to my endo – maybe he will have a some info on this subject that my GP didn’t. Thanks so much Bella for posting!

shasha

[shasha]

in reply to: Have GED – could not tolerate methimazole now having problems taking PTU #1176493

Thanks Kimberly – you are so right. Yes I did make sure that my GP’s office knew what the endocrinologist diagnosed. It’s always good to question everything when it comes to your health. You really are your own best advocate and no one knows your body better than you. There have been many times I second guessed what my body was telling me because medical professionals brushed off my comments. We are so lucky to live in a time when we have the ability to communicate and research and mine information on our own. Doctors have the training and the expertise – but you know what you are feeling inside your own body. It’s always good to ask questions and to speak up if think something doesn’t make sense.

Love this forum.

God bless –

shasha

[shasha]

in reply to: Have GED – could not tolerate methimazole now having problems taking PTU #1176491

Thanks so much everyone! While I understand that medical advice can’t be given by laypersons – given my experiences so far, Graves sufferers seem to know more than many medical practitioners. My GP told me that 0.02 TSH was perfectly normal and that I didn’t need to pursue thyroid issues any further. He order MRI’s of my brain and wasted thousands of dollars and precious weeks that I can’t ever get back, while my disease progressed unchecked.

I would always consult my endocrinologist about medication changes and also use my common sense with anecdotal information – but it’s so important to me to hear other’s comments and observations in their journey down this terrifying and lonely road we are all on. Thanks again and God bless you all.

I am going to call my endo and see what he has to contribute – I’ll be back!

Shasha –

[shasha]

in reply to: Have GED – could not tolerate methimazole now having problems taking PTU #1176487

Hi Naisly – I was taking 20mg per day of MMI to begin. 10mg in the morning and 10 at night. After only 4 weeks my labs were great- then I started to feel bad. He cut me down to 5mg in the morning and 5 at night when I started having the muscle spasms – they were so bad I could not sleep. After 2 1/2 months and being cut down to 2 1/2 mg per morning and and night I still could not take them…..felt like I had the flu all the time.
I started PTU on Halloween and it’s been perfect since then until this weekend. Same type symptoms – started with charlie-horse type cramps and then muscle spasms and all the rest. I’m actually hoping I have the flu (probably not though – had a flu shot and feel too much like last time). The last labs I had were on 11/21/2012.
TSH .960
Free T4 .91
Free T3 3.6
Will have new labs done week after next. Have you experienced these issues with the meds?

Thanks – shasha

[shasha]

in reply to: Help, desperately please if anyone can.. #1176449

Hi Rae – so very sorry to hear of your breakup and sympathize so much with your challenges in “explaining” this crazy disease. I’m a little less than 6 months diagnosed and my marriage (almost 30 years) is stretched just about as thin as it gets. I also have Graves eye disease and my appearance has changed dramatically – not to mention the personality changes. So much good advice here – the open letter was fantastic – and also – I like the “this is me-take it or leave it”. It really is supposed to be for better and for worse. The tables could turn any day and your partner could need your support.
Keep the faith. You will get better and things will get easier. This forum has made a huge difference for me and right after Christmas I finally told all my family and friends what is going on with my health. I had hidden it for months just not knowing how to put it out there. I’ve gotten a lot of positive reactions and some not so positive – human nature I guess. People are concerned about how things will affect them…
Anyway – sending you positive thoughts and hoping that things work out for you. One more thing – I like Vanillasky have developed a really sensitive side I didn’t have before. This disease has made me a much more empathetic and caring person in a multitude of ways. Sometimes I think blessings come in very strange packages!
God bless –
shasha

[shasha]

in reply to: New problems with eyes #1175176

Hello Fairyslipper – Sorry for taking so long to reply – I can’t tell you what a difference your suggestion about the scotch tape made for me. I was able to drive quite well with the tape over the inside of my left lens. Now however, my eye seems to be protruding so much further that it’s bumping my glasses even with them pushed out as far as they can go. I also can no longer see out of the left eye alone well at all – just a blur. When this first started I could see pretty well out of each eye independently, just unable to focus them together – now I can only “see” out of the right eye, although I do experience less loss of depth perception if I keep the left eye open but blocked from the field of vision. I’m having the same issues with my eye rubbing on the inside of the “pirate patch”. Thanks again very much for giving me a couple of months of freedom. If I come up with anything new that can help I will be certain to let you know as well.
Thanks again – shasha

[shasha]

in reply to: New problems with eyes #1175171

Bobbi-
Thank so much for all the good information. I have tried the eye patch and yes- depth perception is certainly an issue. It does work though. I can only patch the left one now though since the left one only looks downward and cants everything to the left if right eye is covered. I am trying to get in to see a new opthalmologist that knows more about TED. It will be a couple of weeks getting in. I should have lab results in a couple of days and at least ill know if I’m hyper again or this is just progression due to stiffening of the muscle. Thanks for the kind words and support. I hope to return the favor to others when I learn a bit more. Have a wonderful day.
Sha

[shasha]

in reply to: New problems with eyes #1175170

Snelsen –
thanks so much for your reply. This forum truly helps put things in perspective. It is very encouraging to hear that the surgery can make the double vision better. Only my left eye has lost mobility at this point – both eyes are involved but left is much worse. My heart goes out to you – not being able to look up with one of my eyes, I can only imagine the frustration of both eyes gaze downward. I will certainly try the patch and will ask the opthalmologist about prisms. I have a sleep mask – but I’m taking it off in my sleep so the tape is probably next step. Thank you again – hope things get better and better for you. Have a lovely day. Sha.

[shasha]

in reply to: New problems with eyes #1175169

PattiMeg – thank you for the suggestions and support. I’m very sorry you had to go through the surgery and not get the hoped for results – and I’m so glad that you have found a good doctor. I am going to definitely get knowledgeable about meditation. The spiritual side of life can get brushed aside in the stress and worry about getting through the next day. I hope things continue to improve for you and you find your way out of the maze soon! Your heartfelt message made me breathe a sigh of relief. This forum is a Godsend. Have a wonderful day and thanks again.

[shasha]

in reply to: TED – no treament except eye drops #1174754

Thank you Bobbi and Kimberly for your replies. It does help to know that my treatment or lack thereof is not unusual.

I should add, I saw my eye doctor yesterday, he checked for optic nerve inflammation (there is none so far) and measured my eyes for movement, very slight in the left eye. He also measured my visual field, internal eye pressure and took a photo of the interior of my eye. The pressure in my left eye increases dramatically if I look up. The superior rectus muscle of my left eye is quite enlarged and that is causing the pressure and double vision. Fortunately, there is still room there before the optic nerve will be compressed. Hopefully things will resolve before we reach that point.

He is fitting me for new glasses to sharpen up my vision and hopefully help me cope with the double vision in my left eye. He also recommended a transition lens that will darken slightly in the bright fluorescent lighting at my job. Genteal gel drops are helping enormously with the dryness and irritation.

I think the glasses will also give me some confidence, especially when speaking to a group or meeting someone new. I’m not a shy person and typically don’t worry much about my looks, however, I would like people to focus on the content of my speech and not on the oddness of my eyes.

Thanks again,
Good luck to all and much appreciation for this place to share.

Shasha

[shasha]

in reply to: TED – no treament except eye drops #1174753

Thank you so much. I will check out the link. Btw – I am taking 200 mg of selenium and also curcumin (turmeric extract), flax-seed oil and Vitamin D-3. I have informed my endo of all the supplements and he had no comment.

I appreciate your reply

[shasha]

in reply to: Struggling to stay patient and optimistic #1174407

I was diagnosed with TED in July and actually just joined this forum today. I wanted to say thanks for the tinted glasses suggestion. I feel silly for not thinking of that myself, although I’m struggling with rationality a lot of them time lately it seems. I also work in an academic setting (college) and find that my appearance (grossly swollen upper and lower lids) detracts from the message I’m trying to deliver oft times.

I can only imagine the frustration that the previous poster must feel after several years of waiting for treatment. I have read everything I can get my hands on about TED (the first month sifting through mis-information) and also find very little encouragement regarding treatment during the active phase. I currently have no health insurance (my husband has always insured us and he lost his job a year ago). I am seeing an endocrinologist and my regular O.D. – who has been so kind and consulted a neuro-ophthalmology specialist on my behalf, who is a personal friend of his, so that I can avoid that expense until it becomes critical. The endo diagnosed me with Graves hyper and TED. My eyes were my chief complaint. I started MMI 10 mg – immediately but was unable to tolerate that dose due to joint pain, muscle cramps and headaches, so I’m down to 5mg and that seems to be working although I’m not scheduled for bloodwork for another month – so I don’t know if it’s effective. The eyes just continue to get worse. Double vision and protrusion in the left eye – right eye seems to be following suit at a slower pace.

I’m very grateful to have found this forum and other people who are experiencing these issues. I hope to find support and offer support in any way that I can.

Thanks!

[Author]

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