[Robboford]

#1059204

Hi all,
Haven’t been posting in the last couple of weeks but have been checking in when time allows at work. I have actually had a pretty rough couple of weeks on this blasted Graves roller coaster. I have been experiencing massive swings in my positive outlook on life (had a couple of really, really down, feeling blue days), eyes have been giving me more grief, intermittent insomnia and a worse than ever feeling of being unwell etc; feel like I am on a pendulum swinging almost daily, or is this just another part of the “ride”? I go in for blood tests later this week and back to Endo on 31st July. Maybe these swings are due to the block and replace that I am being tried on now (these will this be my 1st lab results since the latest change in medications), but it isn’t fun. Has anyone else experienced this. I am even second guessing myself wondering if I am imagining all this or not? Anyhow, life goes on and whilst I am grateful for the quality of life, wonderful country I live in and well being that I generally have, I am so, so sick of being a constant Graves Warrior and just want this ride to end. To all you fellow fighters out there, thanks for your support and for just being there if needed – it really, really helps and brightens my days! Keep fighting for wellness!
Cheers, hugs and kisses
Debbie
PS Feel better already just re-reading my post. Thank you all.

[catstuart7]

#1172935

Graves Warrior Princess!

[Carito71]

#1172936

Hello Debbie.

I hope you feel better soon.

What a battle we have to be constantly fighting. I’m like you … I want it to end already. I have just started though and I’m happy to say that I’ve been on Methimazole for a whole month tomorrow Last week my #s were still high. Almost as high as when it all started but I’m feeling better. I wake up every morning praying that good things continue to happen. Today I woke up feeling like I’m at the bottom of the ocean. My ears …. what a problem.

Caro

[Kimberly]

#1172937

Hi Debbie – So sorry that you are dealing with all of this.

Since you have an appointment coming up fairly soon, it would be helpful to keep a detailed log of the symptoms you are describing. This could potentially help the docs as they decide on next steps with your dosing regimen.

In the meantime, you might start looking for referrals for an experienced ophthalmologist who can evaluate your eye issues. Thyroid Eye Disease is unfortunately mostly “watch and wait” until the disease stabilizes, but it would be good to get an expert in your corner.

Please keep us posted!

[Robboford]

#1172938

Hi all,
Thanks for being part of my Army, all of us fighting the good fight together. I had thought about discussing an eye specialist with my Endo. Would he be the best one to recommend someone who specialises in Graves Eye Disease or should I do my own research or do I combine both options. My Endo has been great and I have a great relationship with him, so I would be confident in his recommendations, but I am also open to finding my own. What do you think?
I have been keeping a Log since I was discharged from hospital and my Endo has found it be very helpful. I just add random entries throughout the day; within an hour of waking I have written how I am feeling, my mood and throughout the day I just jot down entries; ie: eyes sore and puffy, legs swollen, rash red and itchy, feeling down but Forum perked me up again (that one is in there a lot – thanks ALL!), I also write down a summary of what I ate through the day and just a general entry on facial features ie: face pale and puffy, or colour in my cheeks today and sometimes at the end of day I will write down – all good today. It is quite interesting to go back over and read and my Endo finds it invaluable. Who knows I may even publish it 1 day if it will help someone else out.
Cheers,
Debbie

[Kimberly]

#1172939

Hello – If the red rash is on your shins, you might visit a dermatologist to get this checked out. There is a condition called pretibial myxedema that a small number of Graves’ patients experience. It shows up as a red rash on the skin that has a somewhat “pitted” texture, like an orange peel. My understanding is that it’s more irritating than dangerous, although a dermatologist can help with some treatment options.

Some endos have connections with good ophthalmologists, so that would certainly be worth asking. A good source for connecting with eye doctors is http://www.asoprs.org – these are primarily surgeons, but if they can’t do an initial evaluation, they can at least refer you to someone who can.

Take care!

[Kimberly]

#1172940

Oops, sorry…just saw your comments about pretibial myxedema on another thread!

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