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1058524 tn?1285187240

How long after being hypo for weeks and RAI did your energy come back to FULL POWER :)

34 days ago I gobbled down my Fermi toxic drippin's ...err...I mean my RAI-131 100mci dose.
Total thyroidectomy in Nov 2009.
I was on Cymtomel only
hypo hell for 17 days+ TSH over 200 before taking the RAI pill
I been on Levothyroxine 175 for 31 days

I wake up fine, but by 1pm until bedtime my eyes burn a lot. If I lay down I can nap, but I still wake up tired. Nap also means insomnia at night when I should be sleeping LOL sooooooooooooooo how does this work? I am on Lexy 175 which I think is working well (I lost four pounds without trying.)

Any suggestions? I take my med when I wake...nothing but water by mouth for 1 hour, then I have 1 cup coffee with non-dairy creamer, then about an hour later I eat breakfast.
7 Responses
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793305 tn?1493925518
It sounds like you are doing very well and congrats on being past the mushroom cloud part of the program.  It can take up to a year.  Seriously.  But if you are in good shape it could come back quicker.  IF they get your meds right fairly quickly that helps.  For me it was about 7 months to feel better and at almost a year, I am close to saying...I'm Back.  I could never not sleep...I swear I have a couch that seriously sucked the life right out of me...I'd sit...I'd sleep...Hated driving.  Happy to say I am near to conkering the couch into submission and on bad driving days, something coffee, keeps me awake for the 40 miles that I drive.  Not to mention loud music and bad singing. My eyes are dry often.  I use drops for those.  At about 9 PM, I get cold.  My nose gets really cold, but something hot to drink can help.  Amazingly enough a bath does not...I am warm in the water, but when I get out I get quite chilled.  That's weird.  Mostly it just comes down to what works best for you.  
Helpful - 0
1218579 tn?1267638816
Hey girly bummer your still not feeling well.  I was pacing my recovery on you.  your like the leader for me since you had it just before me.LOL  Im totally frustrated as I though I would be going back to work today.  Ha Ha that was a funny thought.  Im post RAI 1o3mcg on 2/24 started ythroxine 2/27 and have changed my dose 3 times and benn in ER twice.  Every moning I blow my nose and it hurts and is bloody but then goes away, until the next time I sleep day or night.  They had me stop Ritalin cold turkey so now I dont know if my Pyshco effects are from that or the levox. meds.  IM sick and tired of dry heaving for no reason, crying oh ya laughing outbursts that I cant control and hiding in bed.  Do you have thses symptoms too.  Ya my eyes are itchy and dry, some times blurry and headaches oh they suck, especially when you wake up with them.  I guess for now im taking it moment by moment and with the help of Lorazapem:)
Helpful - 0
1218579 tn?1267638816
Oh ya excuse all my typpos my head is not working very well (fog) if you will!!!!!!!!!!
Helpful - 0
1058524 tn?1285187240
Hi there Kspitzke my RAI lil sister :)

I hope you are doing well, and I am glad you are on your way to getting better. I am super sorry you have had so many challenges. I felt so bad when I read you had been to the ER so many times. This all messes with our emotions. Try to sleep often as you need it- the natural chemicals and hormones that help us keep our moods in check. If you live in a sunny place try getting sun for 1 hour a day- it also helps mood and gives us vitamin D which many of us end up deficient in. I have been taking Vitamin B and Calcium with lunch or dinner. Most of all...stay on the doctors like you have been. I will keep you in my thoughts and prayers.

Most of my symptoms from HypoHell have gone away, or decreased significantly. Sadly, snoring and swelling are still issues for me, but it's much less today than it was before. The nasal thing is making me congested and leaves me with clearing my throat a lot, but still less each week. Brain fog, yes, but it less every week. Ringing in my ears...again less....much less....but still there. Dry skin is much better, air is less fizzy, and my hair is no longer thinning. (Now for my next trick..I will attempt regrowing my hair.) My need to cry at the slightest thing is gone, and I feel I am near 100% back to my old self.  Finally, I checked today and I have lost a total of almost 10 pounds without dieting (just eat the right things).

The three biggest complaints I have are:
Mother nature has been brutal.
My energy stinks after 12pm-1pm unless I sleep a LOT and nap. Which if I do nap...I cannot sleep at night.
My eye sight has been improving, but it still is awful compared to before hypohell.

Thank you for your reply Hope. I know to not expect things to be perfect and setting my expectations low will allow me not to beat myself up over the next few months. I guess I will learn to like naps, or watch direct demand on Netflix a lot!  
Helpful - 0
Avatar universal
Hi, I hope you are feeling better? I try to navigate in this site but I am still learning. I send messages and do not get responses, I think I am doing it wrong, well I will try again! Just an update. The wifa had her TT and is recovering and is feeling the symptoms of Hypo hell. My question is why do Endos have pts. level out so low, because I took her to emergancy due to mean shaking of her hands and her calcium was 84 and her hormone level was 70.1. There is some hope the pathologist report came back good no cancer in the parathriod tissue and Lympnodes. The Thyroid was sliced and the surounding tissue had no cancer only the 2.5mm solid nodule had stage2 papillary carcinoma. The Endo stated " she might not need RAI". we are hopefull that this remains true. Question have you every heard of anyone not needing RAI after a TT?  
Helpful - 0
Avatar universal
HI I hope you are doing fine. My wifa is going through hypo hell I can not understand why the endo is having her go through this. last appt. we had with him he stated that the pathologist report came back clean no cancer of the parathyroid tissue and sliced thyroid except for the 2.5mm nodule that had the cancer and there might not be need for the RAI. This is good news, my wife's primay care dr. called her the other day and was worried that her tsh level was 70.1 and sent her a perscrition for hormoe meds. We have a appt. with the endo on 04/09/10 and will voice all my concerns and I migth get him in a head lock Ha Ha. wish us luck

p.s. I have been sending messages and have not been getting replies, can you show me what I am doing wrong. I am a rookie!!!!      
Helpful - 0
1058524 tn?1285187240
try clicking on the persons name the colored name, it should take you to their personal page so you get a response. post in the forum don't always let someone know that there is a new post. gald to hear they got it out and there is no spread. I have a friend she was cured by surgery and didn't do RAI. You wife has the same as myself, no spread and a nasty bit of cancer in her thyroid. I chose to have the RAI but i was told it was strongly suggested but I didn't have to have it. I chose to get it because i didnt want to worry about any tissue left. lots of endros are now saying that the dose of RAI is not needed in many cases. voice your concerns and keep posting here! Make sure you click on the words  Justi_has_a_booboo a box should show to leave me a note or just click my name and you can see my page and leave notes there where i will get a alert that you are having questions :)
Helpful - 0
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