[ZachB]

in reply to: Thyroid Eye Disease #1061963

I have had very severe TED and graves since I was about 14 yrs old with my right eye being noticebly worse. I took a large cycling dosage of Predisone steroids and it worked somewhat back when I was about 15. I had my second dose of radioactive Iodine about a month ago, I went hypo or underactive, and am now taking 20 mg of predisone a day for a few weeks and feeling some good results. You definately want to get the thyroid under control before trying to fix the eyes. I have grown to like the very odd bulging eye look, and all the stares that I constantly get. Try to think that stares and head turning are because you’re really good looking…it boosts your self confidence. I find the really little kids are the funniest with their stares and comments. A lot of people find large eyes exotic and attractive. I appreciate the beauty of the non-symetrical and imperfections. It’s probably boring to look like everyone else, although I could stand to be just halfway between normal and where I’m at with Marty Feldman eyes.

[ZachB]

in reply to: New Graves Diagnosis #1062122

I took tapazole off and on for a long time. I never really had any side effect. I have experienced catching up on sleep when tapazole was increased to take me from Hyper to Normal. I believe your body needs to rest after being hyper to repair damage to muscles and bones.

[ZachB]

in reply to: RAI 14 WEEKS AGO #1062023

Thanks Bobbi and Ski, yea that was a bad idea changing my meds I’m sure I was my doctors worst nightmare changing my tapazole dosage according to how I felt for a few yrs and missing labs apointments etc. I talked to the doc and am staying on 50mcgs of synthroid. This is a great blog it has been a big help for me. I feel great, more organized, and i’m seeing my wife and kids more. Still foggy and lightheaded, but i’m sure the doc will boost my synthroid slowly over time.

[ZachB]

in reply to: New and have many questions #1062169

Thanks Ski and everyone for the support, it is definately a wild experience after RAI. I didn’t experience this the first time I had RAI but am now embracing this change. I’m much more mellow and finally leaving work when I should be. I’m definately Hypo but feel better, am able to gain a few pounds and gaining some upper body strength. I’d definately recommend doing the RAI to anyone w/ Graves debating it. It was a very hard decision for me both times, I felt with Graves like I could take on the world and never got sick and ate anything I wanted without gaining weight. Looking back I was working my life away taking on too much and was all over the place. Now I feel like I can focus much better, work isn’t overwhelming and i’m enjoying life more. I’m taking steroids and its helping my eyes.

[ZachB]

in reply to: RAI 14 WEEKS AGO #1062020

Thanks, I’ll call the doc on Monday and do what he says. I really wasn’t expecting to feel like this, I have all the Hypo signs still.

[ZachB]

in reply to: New and have many questions #1062160

I’m also new to this site, i found it while debating to take my 2nd dose of RAI in the car outside the radiology building. I saw some of the possible side effects of long term Hyper (the bone and muscle loss) and this helped me decide to do it. I also saw some Auto Immune disorder connections and I recently got diagnosed with Sarcoidosis which i felt was somehow connected as I was slacking off of getting my labs and probably needed 10mg of methimozole instead of 5. I still almost bolted without taking the RAI because I always saw it as over kill and I was going to arm wrestle my Dr to give me a partial again…but they’re the Dr’s and they seem to all be in agreement that they mainly only do a full burn out.

Three years sounds terrible with being Hypo, I hope you get your levels set. For me I liked being Hyper, but now i’m 2 weeks Hypo and I can’t take it because i’m so light headed. To think this could last for a long time is scary.

Does anyone know if being really light-headed, foggy is a syptom of being Hypo?

Also has anyone had a delay with Synthroid starting to affect them? I thought it would be right away.

[ZachB]

in reply to: RAI 14 WEEKS AGO #1062018

Yes, I changed my dosage but not bouncing it around…I just started taking synthroid 3 days ago, and I guess I didn’t give the 50mcgs a chance (one day). But I feel like i’m going to pass out alot, see stars when i exert myself. It feels like I’m not getting enough blood to my head and have to hang upside-down. My head will be cold to the touch especially in the evening. Slow resting heart rate and slow during exercise.

All of these syptoms are things i’ve never experienced before, so I bumped myself up to 150mcgs two days ago and will keep it at this until my next blood test, and i’ll definately tell my doc. For me the syptoms outweigh the risk of putting my numbers hyper and backing down the meds if necessary. I still have these syptoms but not as bad on 150mcgs, I’m definately following the rules taking meds AM w water and no food.

Do you know if these could be side effects to synthroid or levothyroxine (generic)? Or is there a lag time to this medicine kicking in? Do you know what mcg’s a Dr prescribes for a full thyroid removal?

If I knew I would feel like this I would have not done the 2nd RAI. Also my thyroid cells are still being killed off by the RAI.

[ZachB]

in reply to: RAI 14 WEEKS AGO #1062016

I had RAI done twice, I went through 7 docs to find one that would do a partial burn out. Did this around 1996 worked very fast like 3 days off of memory. It was a huge dosage the Radioactive Medicine guy said it was a dose that would burn out any normal thyroid completely, and it was perfect. I was good for a long time, then Graves came back but minor. I was on around 5 to 10 mg of tapazole or methizimole and I didn’t have any issues other than not keeping on top of blood work as I felt fine.

I moved and went through a few docs that all wanted to burn it out completely. This time I took 16mcg’s of RAI 181 and it would have only taken 9 to burn it out to get to an even level…my doc said this was the only right way to do it, burn it out and take synthroid. I did this about 1.5 months ago and I went HYPO about 2 weeks ago. I hate it and am kind of regretting it…now i’m on 50 mcg’s of synthroid with a TSH of .056 T4 of .69. I’m super light headed and starting to self medicate as I feel like i’m going to pass out.

I keep saying it’s for the best and i’ll get level soon, as the possible side effects of graves and I developed Sarcoidosis…so i think that might be connected.

I think it’s different for everyone but i would hold off as from my experience RAI definately works eventually

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