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S01, so sorry to hear about the allergic reaction. I hadn’t posted yet but was reading your thread hoping it would work out. I don’t know if you’ve heard of Moore’s book Thyroid Eye Disease but she’s got a pretty big chapter on conventional treatments and also alternative. I’m looking right now at a section on immunosuppressants other than steroids. She lists cyclosporine A, ocreotide, pentoxyfylline, and methotrexate. There might be something useful in there perhaps. Wishing you well!
in reply to: RAI or Surgery? #1172989Hi Kararoot, I’d encourage you to seek out another endo for a second opinion. Given that your endo seems not interested in a partnership type of doctor-patient relationship, it might help you to feel good about your decision to talk to someone else even if you stick with the first one. There are people on PTU for years, there is no 3 month limit. There was an FDA warning back in 2010, but if you research it you’ll see that the worst outcomes were for children who took it. I’m on PTU myself and I do keep a super close watch on my symptoms. With this Graves’ stuff there is no risk-free choice no matter which way you go, so you have to pick what works best for you. Given that you’ve already had liver issues with methimazole, PTU might be a no-go but still I say second opinion.
About RAI, my endo is pretty conservative and pro-RAI, but she said one third of those who get RAI get increased TED problems. There is an option to take steroids beforehand that can minimize your risk of worsening eye problems. Then you have to weigh the protection of the steroids with the problems steroids themselves can cause. Surgery of course has the risks inherent to surgery and risk to parathyroid and vocal cords, but having an experienced surgeon good hospital etc. can help. So basically learn as much as you can so you feel satisfied with your choice – that’s what matters most!
in reply to: Hours until surgery #1173013Sending prayers for both of you!
in reply to: confused and need help #1172961TNA, thyroidectomy only takes care of the thyroid part of Graves’. You have Graves’ disease your whole life – your eye problems now are still a part of it. Some folks do get their thyroid out and never have another symptom so I guess they are “cured” but the autoantibodies could still flare up and cause trouble at a later time. My two cents….it’s worth you seeing a good endocrinologist, perhaps a different one than your doctor’s office first contacted. You’d never need the close monitoring that someone who still has their thyroid does but periodic checks to make sure nothing has gone out of whack with your replacement hormone is important.
in reply to: Just dropping in after TED orbital Decompression #1170537Just read the whole blog, dear God Jules you have been through so much. You have my prayers and wishes that every single doctor and medical professional you encounter be incredibly good at their jobs and perform at their absolute best. I am amazed that after all of this – if I read it right – you are packing up your house to do a move? You are made of some very strong stuff.
in reply to: Just dropping in after TED orbital Decompression #1170536Hi Jules, I’ve thought about you often since you last post wondering how you were. I’ll check out your blog and see what happened. Wishing you a speedy and full recovery!
ETA: The link needs a slight correction to wordpress otherwise redirects to a survey.
in reply to: Riding the roller coaster #1172935Graves Warrior Princess!
in reply to: New yearly ish update #1172902Beach, the south has been so hot this summer. You must be glued to the A/C! Good luck on your labs – I hope they reveal some good news. I asked my endo how long it took to get normal after RAI and she started at two months but it could take longer.
Kimberly, coast-to-coast, wow again! I think if I could ride anywhere, at all, I’d be amazed.
in reply to: New yearly ish update #1172899Mike, 50-60 mile bike rides, WOW! I would love to be in that good of shape one day….thanks for the inspiration!
Beach, good to hear from you I was wondering how you were. Sorry to hear you are still hyper, but hopefully as the months go by the RAI will finish its work and you’ll get to a good spot. I’m with you about the heat intolerance, above 70 degrees and I start sweating – it is soooo frustrating.
in reply to: Feeling Harvested? #1172906Hi Tpavlu, first agreeing with Shirley that you really want to get your thyroid TSH and FT4, FT3 all checked again just to make really sure you are as stabilized as possible. About the emotional side, I do get it though I haven’t had any “harvesting” done yet. I feel more like a car that’s gone out of warranty that keeps having stuff break. So many parts of me just aren’t in factory condition anymore, ya know? Part of it is normal aging and part of it isn’t, and it is hard to accept at times especially since most of my peers from school are aging amazingly well and not having serious health issues. All we can do is start from where we are at this very moment though, that’s all we get and we’ve got to do the best we can with it. How it should be, how it ought to be….well best to try to avoid that thought road.
in reply to: New & Frustrated & Mad #1172892I hear ya Mary! I could get a good rant going myself except I’m mad about something else right now. Graves’ really amplifies the experience of anger.
First thought, I totally agree with others that you want a second opinion. Your eyes will absolutely get better. It is a serious and complicated business, but there are treatments and surgeries, it might be a couple of years but you will get back to relatively normal eyes. Oh and thyroid surgery absolutely is an option – read Adenure’s recent account. I have the beginnings of TED and have been researching my ass off and learned there’s a lot that can be done and lots of brave people have gone on this path before us. It is not hopeless! Get Elaine Moore’s book Thyroid Eye Disease.
Other thought, on what do they base your Cushings’ diagnosis? There’s a lot of overlap between it and hyperthyroid w/ weight gain symptoms. I had weight gain with Graves’. 15% of all people with Graves gain weight – that your endo doesn’t know that leads me to even more strongly say second opinion time.
in reply to: seasonal allergies and TED #1172853Leslie, I love the Zyrtec too – it is a really effective antihistamine. I am lactose intolerant so I’m not so sure about the milk though!
Another eye question I’m too lazy to start a new thread for….what about crying? Is it good or bad for TED? Seems like it could really wash out the area behind the eyes but then it also could bring more fluid in for congestion.
in reply to: seasonal allergies and TED #1172850Thanks everyone! It sounds like antihistamines are a no-go. Like Alexis I do notice some increased heart rate with them and definitely increased bp. Still I need the sometimes too. Kells, that’s an interesting idea about the nasal steroid – I wonder if any would soak into the eye area and help out the TED too? I’ll report back if I get a chance to try it.
in reply to: Introduction and frustration #1172828Good luck at the endo tomorrow Mini, I’ll be curious to know what he says. I’m sorry you’ve got to deal with other autoimmune issues on top of GD. Maybe that’s complicated your reaction to the ATD’s because the antibodies are so riled up? And I hear ya about some days better than others, when I say I’m “okay” I’m using a pretty low bar….okay means not feeling completely awful. It’s rare I feel actually healthy and normal – I got maybe two of those days about a month ago and I’m not sure what made the magic happen but it slipped by. Here’s to feeling better one of these days!
Bobbi wrote:The information that we have about smoking — which includes ever having smoked — is that it increases the risk of getting the eye disease and also the severity of the eye disease when we get it.Holy crap! I’ve never smoked, but I was exposed to a whole lot of second hand smoke during a few years in my youth. That was over a decade ago though – could that matter?
Angela, good luck to you. I can understand you want the eye disease gone NOW. If only there were a way. I don’t remember the exact figure but there’s an average time that the eye disease runs its course – I think it’s around 24 months. There’s some stuff on this board about the “hot phase” if you search for it that may be of help.
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