[Anonymous]

in reply to: Orbital Decompression DONE! #1071461

Do you still have Grave’s, or TED that is being followed, and treated? Are you having symptoms now? If you have a primary care provider or an endocrinologist, I would ask that doc to ask around, see if he/she can provide a couple names of docs who are ophthamologists who are known the area for their knowledge of Grave’s. If you live in a place where there is a large medical center, or a university hospital, I would call the eye department and ask the same question. Where do you live? It is possible that someone on this site knows of one, but I am not sure if the site rules allow mention of doctor’s names. When I finish this email, I will look up the rules about that. From your email, I am a little unsure of what you are looking for.
In my experience, I did the things I mentioned above. I asked for all docs in the community who were familiar with Grave’s. Not sure if this helps, maybe the moderator/facilitator has some better/additional suggestions.

[Anonymous]

in reply to: eye muscle surgery done 12/18 #1067019

My friend had the strabismus (eye muscle) surgery @ six weeks ago. You will probably see much more improvement when all the swelling goes away. She said it was discouraging for the first few weeks, but now she has improved greatly, has almost no double vision now. I presume it will take at least two months to really evaluate it. I think I have finally accepted the fact that it is going to take as much as a year, maybe more, to have all these procedures done, get back to relatively normal vision. I have my first OD 2/2/10. I’ll give updates on how it goes. From my understanding, strabismus surgery is really easy post-op, compared to OD.

[Anonymous]

in reply to: Orbital Decompression DONE! #1071459

We are monitering the left eye very carefully. If there is increasing decrease in vision, the OD will be done emergently. I have objects outside that I look at every day, watch for deterioration, and I am seeing the neuro-ophthamologist q week until the surgery. Hoping it stays stable. I live alone, have a friend flying from Texas (I live in Seattle) to stay with me post-op. Two of my three kids are out of the country at that time, the other one has a full time job in So. Calif., and I decided, and she is fine with it, that she will come some other time, when we can enjoy the Seattle weather.

[Anonymous]

in reply to: Orbital Decompression DONE! #1071458

Hi Ski, the other eye IS affected, inferior and medial/lateral muscles, but not as much. Optic nerve, visual fields, color recognition are all fine.
I just hated to be pushed in a corner, have the OD while I am probably still in the active phase, but it needs to be done. There are several cranial nerves in the area, and I am fond of them. I would presume they do their best guess to decompress approximately the same on both sides. I almost took Rituxin, but this event precluded doing that. I did have a course of metholtrexate which made no difference. Thank you so much for your response.
Shirley

[Anonymous]

in reply to: Orbital Decompression DONE! #1071456

lHello Ski and all others,
I just found this site, thanks to a TED online friend from Denver. I have some optic neuropathy in my left eye, so the optic nerve is having some pressure from the fibrosed muscles. Therefore, I am scheduled for and OD 2/2/10. I am NOT looking forward to this, and tried hard to avoid having it done. Now, having spoken to TED people, and four surgeons, I feel pretty good about moving forward. The symptoms I have are increased blurring in the eye, and less clear color recognition. It seems like I go to eye docs every other day! A neuro-ophthamologist (keeper of the optic nerves) and a strablsmus surgeon (for much later) and a surgeon or two who do OD. After speaking to several docs, I have decided to choose the eye/oto team, where the ENT doc does the medial wall, and the eye doc does the lateral wall. I will be happy to document the whole experience for this site. I am interested if anyone else has had the procedure I will have, ie., a team of eye and ENT. I have diplopia (double vision) of both eyes, so I have to used my downward vision to look up and straight ahead.
THe inferior muscles are extremely fibrosed, especially on the left eye. One worry I have is that we do not know if I am still in the hot phase. I did react well to a recent Solu Medro burst in the hospital, but the improvements disappeared in a few weeks. But all the other times I had prednisone orally or another Solu Medrol, there was not reaction or improvement at all. In my case, the eye part popped up many decades later, from when I had thyrotoxicosis after I had my first child. I had a subtotal thyroidectomy, after I could not be controlled with propylthiouracil.
I would like to hear more from people who have had OD. I am wondering if I have one eye done, what the rationale is for doing the other eye, if it is not as bulging, and the optic nerve is ok. Also wondering if my visual fields will improve after OD.
shirley

[Anonymous]

in reply to: Living through Graves disease #1067082

@elf,
Can you please resend the PM. I did not receive it because of some issues with my account.

Folks,

Thanks for your response. I really appreciate your input. Unfortunately my husband had a bout of uncontrolled hyperthyroid just after I delivered my baby. And the result was disastrous. I ended up with postpartum depression and have just not been able to get over the abuse. Two of us having hormonal imbalances at the same time causes total imbalance in the house. In my anger I have also lashed verbally at him and told him bad things. We have tried counseling and a range of other things like yoga and meditation. But the healing is still slow. I need to understand that it is the disease and not the person. However what angers me the most is that he continued to be abusive even when his thyroid condition was under control with meds. Is that a problem caused by the disease or the personality? It is one question that lingers on in my mind. I would like to know what techniques couples used specifically to cope and support each other. Has alternative medicine been helpful? We tried homeopathy and it did not work. Right now we are trying ayurveda. We do yoga and meditation everyday and that has put our life in the proper direction. Please do share your input.

Regards,
Kavya.

[Anonymous]

in reply to: Fields Test #1069104

Hi! I just had to do a field test (field of vision). I had an old eye injury and now am getting floaters and blind spots. Has she complained about floaters or dry eyes or sensitivity to light?

As I understand, since the blood is traveling faster in our bodies, there is more pressure behind the eyes. The test does not hurt but seems to take forever. I didnt find it to be a big deal. They just want to make sure she is ok

Amber

[Anonymous]

in reply to: life insurance refusal #1069195

ewmb,
I am an insurance agent in Ohio and yes…sadly Graves is an automatic decline for most life insurance companies. Because it is an auto-immune disease that never really goes away.

There are specialty companies that deal with "high risk" clients…or increase your coverage through work. If your Spouse works at a company offering the life insurance, get on their plan, usually it is a lot like group health coverage.

You could also check out your mortgage or credit card companies to see if they offer it as a group rate.

I was lucky, being in insurance for 10+ years, I already have life insurance established!

Good luck!
Amber

[Anonymous]

in reply to: New Blood test- High Liver Enzymes #1069268

thanks!

He is changing the antidepressant that I am on…(for concentration)…I can tell a difference but it is also making me very very tired…. He thinks that may be the cause.

He told me too that I have to come in every 3-4 weeks for blood tests just to make sure it is ok. He is a great doctor and said that if it takes me 50 years of paying $10.00 a month, he is ok with that…of course that made me cry! There really are some good DO’s out there. I trust mine 100% and wouldnt go to a specialist unless he didnt make things better. In my case, he does.

I drink maybe 24 beers and 15 margaritas a year…so I dont think that it is an alcohol problem…and since I have been on meds, hardly any at all! Maybe the things we eat out (fast food) has more iodine than we think…maybe will try to start eating more fresh fruits and veggies…not to say going cold turkey on fast food, just try to cut back.

I am so glad I have you guys here!

[Anonymous]

in reply to: New Blood test- High Liver Enzymes #1069265

is it just me…or is the time way off on the posts???

[Anonymous]

in reply to: Memory Loss #1069974

We are great "pretenders" because if any of you are like me…and it sounds like you are all strong character people…you don’t want to appear weak or stupid. But that is how I feel…weak and stupid. Of course if I told them each time I was feeling out of sorts they would be sick of me!!!

My hubby works 4 ten hour days which often turn out to be 12 hour days…when he comes home I am sitting numbly on the couch and watching tv…kids made their own dinner because I didnt feel like working… I know he wants to feel sympathy for me, and it isnt every night…but the looks I get ” title=”Sad” /> ” title=”Sad” />

Not knowing what to do to make the memory better scares me to death. But my conversations with my 84 year old Grandma have become quite interesting. I used to think she was losing her mind, but I think I just passed her up!!!

Now we have more in common!!!!

Bring on the elderly…I will fit in!

And remember…we are all strong people and God thinks we can handle this, so let’s prove him right!

(side note… EVERY TIME I try to reply I hit save instead….ughhhhhh!!!)

[Anonymous]

in reply to: Memory Loss #1069971

I have had panic attacks while driving because nothing looked familiar, didn’t know where I was supposed to be going or what time it was. All the tools, cell phone, clock and such were useless because they did not make sense to me. I pulled over a couple of times and just had to cool down to get back on track. I also have about 5 post it pads with me at all times, to make notes, put on my dashboard so that I know where I should end up and so on.

I feel like I cannot always find even the simplist word, and my concentration at work has been in the crapper!!! I am in sales, this is NOT good.

Last month, my doctor gave me a Rx for an antidepressant and it is helping some. At least the Klonopin keeps the anxiety/panic attacks down to minimal and the AD helps a little with concentration. I take this with my Tapozole.

But, now that I am taking all of this, I am tired….no exhausted…all of the time. A 10 minute drive makes me feel like I will fall asleep at the wheel. I am going next week for more blood work, will ask him if there is anything I can do about that…maybe I am taking too much klonopin!

Anyway…we all ramble on and share stories that I cannot share with my present world…I so appreciate the fact that here, people are very nice, not judgemental and caring! My family just thinks I am being lazy…but leg cramps, hand tremors, eye problems and the occasional looney moment…it would wear anyone out!

Amber

[Anonymous]

in reply to: TSH Level #1070430

I am currently on Tapozole, I see my primary physician. He diagnosed me with Graves in March. He is doing a complete blood work up the second week of July. I don’t have insurance so he is helping me so that I dont have the 3-400 blood test every month. He increase me from 2mg/day to 2 1/2 mg.

He has been wonderful with me. I am also taking Klonopin for anxiety for panic attacks and a couple of weeks ago he gave me an antidepressant hoping it will help me focus and stay on task. I feel like I have add!

Thank you for your help!

Amber

[Anonymous]

in reply to: TSH Level #1070428

Yes, I am experiencing blurred vision, fatigue, confusion and other symtoms. I have no insurance and my doctor is trying to do blood tests on tsh and not the t3 and t4 because they are expensive. I think we did a t4 in march but I do not know what the level was. he said that next month he wants to do a cbc on me.

Any help is good help! At least I have a place to talk where i am not judged or feel stupid! ” title=”Very Happy” />

[Anonymous]

in reply to: Just diagnosed with Graves…and I am scared #1070471

I am 37 and the word Disease was scary to me too, especially since I have no health insurance. Don’t let the doctor rush you into anything serious. Ask him why he is suggesting something so radical so quick. Can you try the medication?

I have tremmors, memory loss, weight loss (35 lbs…only good side effect of graves), and high bp and heart rate. My doctor has me on Tapozole, Klonopin and an antidepressant. Have been having panic attacks and forgeting where I was going when I was driving. Been taking my medicine as I am supposed to now and things have been mellowing out a little. I still cannot concentrate at all!

The thing my doctor tells me is that Graves Disease sounds really really bad…it is not fatal, it is treatable. If you think your doctor is rushing you, get a second opinion. At least try the meds to see if it levels you out. I am scared if I do RAI I will go hypo and have to deal with a whole new set of problems!!! Either way I am on meds for life…so lets try this first!

This site is nice. Lots of supportive people!

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