[Jules]

#1017869

Hello group- I have been away from the forum for a while dealing with my TED and hypo he’ll after RAI.

Background: Dx with extream hyper grave disease 1yr ago today. RAI nov ’10 (20mci) normal tsh and ft4 10 days after RAI. Extreamely mild eye issues for 2 hrs prior to being Dx with graves. Mild eye systems before RAI tearing scratchy eyes vision blurry. Lost night sight 3 days after RAI. Jan’11 Dx extream hypo. TSH 89!. Endo said never seen anything this quick from RAI. endo watched the eyes said oh you’ll be fine. Oh and here take these pills.
Replacement therapy:
Endo said that after RAI you take a pill and your fine. Well I wish that they would explain that it takes some adjusting and what you need to know about how adjusting will effect you. Or most but not all.

I started on synthroid .50. I thought I was going to die. Weak muscles could hardly lift my arms. Shortness of breath Heart palps brain fog etc. They took me down to 1/2 tab of ,25 synthroid then increase by 1/2 each week. Currently sitting at .88 synthroid for 14 weeks tried to go to 100 and had a complete disconnect from brain to eyes to bady, n
All were working but none of them in junction with each other, i have taken my self back down to .88 and went to a new dr, and I am getting ready to try Armour 1 grain to start. I really hope I can get regulated and back to normal on armour really looking forward to getting leveled out so I can focus only on my worsening eye issues.

Can anyone on here help me understand what they do with their dose increases? What kind of issues have you seen with the increase during the first few wreak?

TED:
seeing a neuro opth since Jan. Eyes are worsening started with double vision when I look up. Then extreme fuzzy in the right eye. My ENT was taking a ct scan of my head and throat for sinus infections and swelling in my throat that is wen they found what I suspected optic nerve is being compromised. I had started to see black dots and floaters. The floaters move around in your field of vision, the black dots stay where they are. Tried steroid shots to the eye but that was not helping I am now on 1gram of soul-medral weekly trying to assist in reduce the swelling. Next step would be surgery:(

I wanted to avoid RAI Beacuse I knew I was having eye issues and had read that RAI can make eyes worse. but the endo did not believe me. They sent me to an opthmoligist who said oh it’s just dry eye. Needless to say now the endo does not want to see me because he has a hard time looking at my eyes and seeing what has happened. He does everything over the phone. I’m switching to a new dr.

Anyone else 8months post RAI having their thyroid swell at the bottom of their throat with pain?

Sorry to down load but this rollacoaster ride needs to slow down some or some one is going to get hurt. I just about fed up with these Dr’s that think hypo is no big deal for graves paitents.

[elf]

#1061388

Sorry to hear that!!!

I had mild eye problems starting before my RAI, too (dx in September, one eyelid started to swell in November, RAI in December). I knew in November that it was the beginning of TED, and even when the endo dismissed that, I still knew it was the start of the eye problems, Still I did RAI, because I knew my eye problems will be there with or without RAI. I just wanted to deal with at least one part of Graves, the thyroid. Had 10mci though. Maybe because of the smaller dose, didn’t turn hypo for whole 5 months. Started taking Synthroid 100 then, and it agreed with me, but I do understand that some people may need adjustment, and/or switching medication.

The floaters and black spots are not good signs, and whereas generally they wait until your eyes burn out before they do any eye surgery, it’s an emergency when your optical nerve is compromised. You may need OD (orbital decompression) asap, even in the hot stage. I waited until my eyes burned out to do OD (waited until all sensations of sand, scratchiness, dryness, teariness disappeared), and while it took a lot of anxiety to think that they are getting into your head, overall it was worth it – it helped to eliminate pain, vision problems, and appearance problems.

I didn’t have thyroid swelling though, I am not sure what that is, – sounds like some thyroid tissue is still left?

[Jules]

#1061389

Have you had to change your dose on the synthroid yet? Did you have any issues with the racing heart and palps etc? Just wondering why I have Duce a weird reaction to the increase you would think going from .88 to 100 would ne no big deal. Also with your eye surgery. How long were you out of commission in the hospital etc…

[elf]

#1061390

The diagnosis and RAI happened in 2005, so it’s not very recent. I am still on the same dose of Synthroid, 0.1mg, almost 6 years later. It is not necessarily so for other people who may need to change the dosage or medications (switch to Armour, for example).

I didn’t have palps and heart racing in the months after RAI, except in some surge 3 months after. Some people have similar to yours problems post-RAI, maybe they will chime in.

For the eye surgeries, OD was an overnight in the hospital, and then about 10 days looking the worst (I wore large sunglasses at work). Lid surgeries a year after that, again about 2 weeks of looking the worst, but you go to work on the second or third day after the surgery.

[Author]

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