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in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177552

My 2cents

I did not read the post made by Kimberly that mslux asked her to remove. Did I make sense just now?

At the end the day, Kimberly is following guidelines and if I personally don’t like them then I don’t have visit this forum right? Regardless, I’m not trying to get into that:|.

On the matter of extreme fatigue and cognitive impairment, I’m soooo grateful for the voices of mslux and Naisly (I printed out your tips:), Stymie, eward, Geezer, ChristinaDe, beauty2010 and Raspberry

Like beauty2010 said, thank you for starting this thread mslux. A lot of points that were made, well I couldn’t have said them better myself. It was spot on.

Geezer, one or even some might say that “perhaps you should not be spilling out so much information on a public forum on the world wide web” but thank you for being honest about your feelings…for they are REAL. The changes that we are forced to “live” with are real and takes a strong heart to accept.

I too am hopeful for full recovery-we have to keep pushing. Yes we are all patients but some suffer differently than others. Seems the majority of us (in this thread) can relate to each other when it comes to the weakness, emotional numbness and brain fog we experience.

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in reply to: Tell the Truth…. #1177881

Thankfully, I have a good family that tries to be supportive and won’t allow me to feel sorry for myself. I have a few good friends and I do enjoy my “me” time. And I can’t completely blame graves for the demise of my last relationship because there was so much involved but it certainly played its part. Everything happens for a reason and it was honestly for the best.

The change in my appearance and how I feel about that also makes me prefer to wait until my eye surgeries are all done with, but I consider myself new to all this still and since its mainly a guessing game I can’t help but think about my future often…eg: What happens when the kids are all grown up and gone? One day at a time I guess.

Living well emotionally and physically and wondering if it will ever be my reality is something I always think about and it helps to hear from others after they’ve had a TT and/or OD..it gives me something to work towards while listening to my own body. I’m grateful that day after day I feel better than I did before.

Thanks again, for all the responses…you guys are great!

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in reply to: High TSI (700+) post thyroidectomy?? #1177484

Im in Toronto:)

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in reply to: High TSI (700+) post thyroidectomy?? #1177480

Thanks so much for the info/input everyone!!

I see the eye surgeon/Opthalmologist in May to discuss OD surgery etc etc…so I will request the TSI then…I’ll use the excuse that I want to be certain that I am in the cold phase (since I’m not so sure these days; my eyes still get red and watery)

Naisly, do you live in Canada?

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in reply to: High TSI (700+) post thyroidectomy?? #1177473

hi all,

I had TT almost 3 months ago. I’ve done lab work once since then and scheduled for another one in a few weeks. My issue is my endo will not test for TSI, Thyroglobulin Antibodies or Thyroid Peroxidas Antibodies. He and my family physician both feel testing for it is not “important”. I’ve never had my TSI etc. tested.

Any suggestions on how to get the endo and physician to see the importance of these tests??

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in reply to: Living with Graves Disease… #1177495

Hey,

I think you will find this forum to be a great support with good information.
I hope you begin to feel better soon. Your family should be ashamed of themselves. I wonder if they have any idea how hurtful and ignorant they were being. Let me stop.
I’m sure many of us can identify with your story in more than just a few ways. My point is that if you were bearing (did I spell that right?) this all alone, you don’t have to anymore (sorry for sounding mushy) but honestly this forum has been great for me and I’m sure I speak for many when I say, many.

I REALLY hope you find a good endo and a good ophthalmologist. When you find them, if you feel that they’re not the right fit, then get a second opinion. I’velearned that I have to continue educating myself, eating well and being my ‘own’ advocate.

I know all about the eyes too, many of us in this forum do. It’s my biggest challenge to date. Even my most hardest trials, most embarrassing moments could never compare. I’m going through the stages right now and it sounds like you are too.

Kudos to you for tackling your Master’s! If you need a break, then break.
I hope the link Kimberly posted is helpful for you.

Take care and thanks for sharing your story:)

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in reply to: OD update #1177393

I’m praying that you continue to recover well. Has your specialist mentioned whether or not your eyes will continue to go down? My eyes are 26/27 also and I am hoping that I can get back to at least 22 but I realize I may just be dreaming.

I’m surprised yet very happy to hear that your swelling is going down so quickly since one specialist told me that it could/would take up to 2 yrs for the swelling to go down:o.

Wishing you a speedy recovery:)

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in reply to: Anyone with TED 12-18months and considering or has had OD surgery? #1177228

Thanks sooooo much to everyone who took the time to share their own personal experiences. I took a bit of everything from each response.

I’m definitely going to have the surgeries; I prefer having both eyes done at once instead of one at a time and I’m hoping that the next specialist I see will be willing and if all is well I hope her wait list is not as long as the previous one (4-6 months).

The same specialist told me that it could/would take up to 2 yrs for the swelling from surgery to go down. I think he was just being mean by making me think that the surgery wouldn’t help at all.

My eyes have felt better these past few days but I don’t want to jinx myself.

I guess here in Canada they don’t promote the use of prednisone so much even for someone who eyes are as puffy and bulging as mine. I was prescribed it once and it worked somewhat but I’m not sure why the two specialists I’ve seen haven’t recommended it again; to help with the swelling until surgery.

Fingers crossed for the 3rd opinion in May:/. I’m hoping to make a decision on which specialist I will go with after that appt.

Going for a cat scan this Tuesday so I’m hoping that they will give me a copy so I can take it to the next specialist for her viewing.

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in reply to: Anyone with TED 12-18months and considering or has had OD surgery? #1177224

That’s the thing Kimberly, I believe that my eyes are in the active phase again but when I asked the ophthalmologist he said, “it’s hard to say, I can’t tell” . So where does that leave me?

My physician (waiting to switch, but until then) is the most timid man I’ve ever met…he won’t even discuss my graves since there are “specialists” involved. The specialist appointments are far and in between-next referral appt is May 3rd..so what do I do? I guess given the side effects I shouldn’t be so eager to have the steroids.

Then I ask myself, do I even know what the “active” phase is?

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in reply to: TED & Block and Replace Therapy #1177266

I have had a TT and I have TED. I’m having trouble understanding why the ophthalmologist I saw recently said that I have had TED for too long and would not prescribe any steroids. He himself was not able to say whether or not I was still in the active phase. Personally I think it would help.

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in reply to: Anyone with TED 12-18months and considering or has had OD surgery? #1177217

I was told that steroids wouldn’t help me at this stage-that I’m too far gone even though I still feel a lot of pressure behind the eyes….I’m not sure.

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in reply to: 2 decompression surgeries……. #1177023

Thanks so much for your support ladies:)

No I didn’t ask how many OD’s they do a year:(
I only know that the first Specialist (one I’ve been seeing since last year) has done about 5000eyelid surgeries

He also said that I’m too far into TED to be treated with prednisone and the only thing I could do between now and surgery was use lacri-lube, a Vaseline like gel I squeeze into my eyes at night.

I don’t know he had this “whatever” kind of attitude as if I sneaking around his back or something lol…yeah it is a bummer.

I’m thinking of following up with the cat scan, seeing a the 3rd surgeon for yet another opinion in May…if she’s like him or worse then I’ll make my decision from there.

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in reply to: Anyone with TED 12-18months and considering or has had OD surgery? #1177220

Thanks for sharing your story. I’m so glad you feel confident and more comfortable again. No one knows it like we do and I look forward to getting to that stage in my journey.

I’m to have he same surgery sometime this year (hopefully). I’m just trying to get the right surgeon since its the only two eyes I’ll ever have, I need to be sure because you’re right this is major surgery.

I was told my eyes could only go back 3-4. That could be because my bulging is significant; they measure 26/27.

Did you have both eyes done at once?

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in reply to: 2 decompression surgeries……. #1177020

Hey, it didn’t go as well as I’d hope. Left the office feeling like I was going to be stuck looking this way always which means I’m going to follow through with the appointment to meet with another surgeon in May- she’s a woman so hopefully it will go better

The one I saw yesterday said…I shouldn’t be driving with my double vision even thoug I don’t see doubles when I look straight (no other doctor has ever mentioned that to me before). He suggested covering one eye or prisms

He said he has never seen much change in people who have TED and have had the TT. He said that I have had TED so long (1 1/2yrs) that there isn’t much that can be done for me and that it is totally up to me if I want to do the OD surgery, lid surgery ect or stay like this.

He said the fat above my eyes would require “cosmetic” surgery even though I wasn’t born this way and that it probably would not be covered by ontario health. He mentioned something about the fat not being fat anymore but scar tissue now. He said he would not touch the fat/scar tissue above my eyes but remove the fat behind the eyes (the previous surgeon I met with said that he would remove the fat above my eyes?!?!)

He said he would do one eye at a time-2 months apart and that he would at the same time weaken the eye muscle which would lower the eye lids. He said my eyes would go back probably about 3-4 mm. That it would take several surgeries and that it would be at least 1-2 yrs before the swelling went down after all surgeries. He said something about a 3 wall OD surgery??

Every question I had, he answered as if he was annoyed that I was asking them. I brought pictures and he said his goal would be to get me back to my old face but that it would probably not happen. He put me on his 4-6 month waiting list and will be sending me for a cat scan

I am praying that the female surgeon I’m meeting with in May will be more compassionate and be more encouraging. If that doesn’t go well either, I’ll remain on the wait list and hope I make until then OR I may just go back to the first surgeon-the surgery bookings are way sooner
Its possible that the more well known specialists are just too busy and become so insensitive and cold after a while. Maybe I just need these 2nd and 3rd opinions to make sure Im making the right decision for me. I just don’t want them to mess up leave me cross eyed or worse than what I started out with.

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in reply to: 2 decompression surgeries……. #1177018

Hi, as promised I am giving an update.

So my appt was March 5th with the ophthalmologist that I have been seeing for almost a year. This was supposed to be a follow up appt before surgery, scheduled for March 27th.
That same day I had a 6 week follow up appt with the surgeon who performed my TT…all went well and he, without hesitation referred me to a ophthalmologist/ocular plastic surgeon in the same hospital. He encouraged me to give my eyes time and said that 50% of patients who have TT and suffers from TED, their eyes do get better within time and that it had only been almost 2 months since my TT.
We agreed that referrals take time and I would have to wait some time to get an appt with the new eye specialist. So he went ahead an referred me. First appt is in May.

I also had an appt with my optometrist that same day. I’ve been waiting to see this particular eye doctor for months because of his experience with TED. He did a full exam and determined that I need to be seen by a specialist sooner rather than later. ***side note*** this eye doctor’s office is in the same building on the same floor, right across the hall from the ophthalmologist/ocular plastic surgeon I had been seeing previously and the optometrist knows of him.

Oh yeah and he said that he has heard of more than one OD surgery for sure…

Well he referred me to a surgeon in the same hospital where I had the TT done (the two surgeons I was referred to are both on the same team and both have extensive, extensive experience which made me feel really comfortable).

I decided that I would go with whoever called me first with the nearest appt.
I got an email yesterday from one who booked me for May (that referral came from the ENT surgeon who performed the TT and as great as he is, he obviously had never examined my eyes-he was just doing me a favour because he could and knew I had eye issues.
Then I got a call today from the other surgeon-this referral came from the optometrist..for obvious reasons his referral was much more detailed. Wow super quick; my appt is tomorrow @ 10am.

Oh by the way I cancelled the surgery scheduled with the previous ophthalmologist and did not attend the follow up appt. Something in my gut was not comfortable with him. He, nor his office has called me to inquire why. Guess my gut was right.

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