NoWomanNoCry
Drama Llama
Posts: 5,856
Jun 25, 2014 21:53:42 GMT
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Post by NoWomanNoCry on Mar 16, 2015 21:19:41 GMT
elaine how are you feeling today? Sorry if you already said...I tried to skim the replies..may have missed it!
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Post by elaine on Mar 21, 2015 0:33:39 GMT
Well, I had my endocrinologist appointment at 10 am and didn't end up leaving the medical center until 4. NOT what I was expecting.
The Endo was nice - a naval one I hadn't seen before - and he brought in the Sr. Endo on staff, who looked at the instrument he had been using to measure my eyes and said "that's the same one I used on President Bush." So, Sr. Endo was HW Bush's doc!
They are worried that my irradiated thyroid may have healed itself because of my numbers and when they did an ultrasound, there is increased vascular activity there again. Since I'm on Synthroid, they can't do the reuptake test again, but we are going to keep,decreasing my Synthroid and drawing blood and if the numbers stay out of whack, we will know that my thyroid is back.
They then sent me down to opthomology, where each of the three docs I saw, one being an neuro-opthomologist ran every test they could on my eyes. I may never stop seeing spots. They could see how bad the double vision is by looking at my eyes jumping when they would have me look at an object across the room, cover one eye and then switch to cover the other.
They want to see me again in June to consider radiation of the tissues around my eyes, or surgery where they remove part of the bone in my orbital cavities to relieve pressure.
Next was a trip to the lab to give more blood to look at my antibody levels.
While I was then waiting at the pharmacy for more eye drops, I emailed the Endocrinologist, because he asked me to, and updated him on Opthomology. He called when I was getting in my car to tell me that they had discussed my case at that afternoon's department grand rounds and decided they wanted to meet with me on Monday to go over starting intravenous steroids right away. It will be once a week over the course of several weeks.
So, back I go on Monday. I left my house at 8:30 this morning and didn't get home until 5:00. Here's hoping it will be much quicker on Monday.
In googling intravenous steroids for TED (what I learned is what they call thyroid eye disease), I did myself no favors as everything kept talking about not expecting all the eye swelling, tearing, and bulging to go away for a while, if at all, and that the patient could seek counseling to help with body image issues! Poo! Not that I'm against counseling, but I'd rather they fix my eyes!
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M in Carolina
Pearl Clutcher
Posts: 3,128
Jun 29, 2014 12:11:41 GMT
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Post by M in Carolina on Mar 21, 2015 2:11:15 GMT
I'm so sorry that steroids seems to be the only treatment for you, Elaine. My MIL has been on steroids for years, and I've seen what it's done to her.
My dh's childhood friend, who graduated high school with me and was the best man at our wedding was just diagnosed with MS this past year. He lives in Finland, and they don't even use steroids anymore. They are very aggressive at treating MS and go with the IV infusions first.
His care has given me hope to not have to do the steroids. I don't do well on them at all, and my MIL really doesn't want me to use them. I get horrible bladder retention to the point of having to cath--just on the week of steroid pills.
Maybe there's some more treatments for TED in Europe that are not using steroids. It's been a huge struggle for my MIL to get treatment that doesn't include steroids. It's so sad.
I'd rather deal with pain--which can be treated fairly well, than deal with bad vision or how awful you feel on steroids. You're in my thoughts and prayers.
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Post by freecharlie on Mar 21, 2015 2:24:19 GMT
Well, while it sucks you were there so long, it sounds like you had great care, multiple eyes and some progress.
I hope the iv stuff they start on Monday works and that they figure your thyroid out.
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NoWomanNoCry
Drama Llama
Posts: 5,856
Jun 25, 2014 21:53:42 GMT
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Post by NoWomanNoCry on Mar 21, 2015 2:59:32 GMT
Wow I hope the IV meds work for you I can't even imagine dealing with all of that. Good thoughts and prayers your way!
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Post by elaine on Mar 21, 2015 3:05:58 GMT
I'm so sorry that steroids seems to be the only treatment for you, Elaine. My MIL has been on steroids for years, and I've seen what it's done to her. My dh's childhood friend, who graduated high school with me and was the best man at our wedding was just diagnosed with MS this past year. He lives in Finland, and they don't even use steroids anymore. They are very aggressive at treating MS and go with the IV infusions first. His care has given me hope to not have to do the steroids. I don't do well on them at all, and my MIL really doesn't want me to use them. I get horrible bladder retention to the point of having to cath--just on the week of steroid pills. Maybe there's some more treatments for TED in Europe that are not using steroids. It's been a huge struggle for my MIL to get treatment that doesn't include steroids. It's so sad. I'd rather deal with pain--which can be treated fairly well, than deal with bad vision or how awful you feel on steroids. You're in my thoughts and prayers. M, I am willing to bet that the IV treatment your friend received was IV steroids. When I first looked up IV steroids without specifying TED, there were pages and pages on IV steroid treatment (and its side effects) for MS. I had to then search with TED included to check for thyroid eye treatment. It ends up that the treatments are similar and may use the same steroid. IV steroids have fewer "minor" side effects, like water retention and weight gain. They are more costly, however, and have the potential for serious side effects like strokes, so aren't used casually here. The positive is that with IV steroids the plan is to receive an IV weekly for several weeks and then stop, so it won't go on longer than a month or two. I hope that you are able to find treatment that works for you that isn't steroid-based, and that your MIL feels better soon.
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