[Anonymous]

#1078692

Hi there. Im sorry you are feeling so horrible at the moment. I had rai in Jan this year, and am on 100mcg thyroxine now for the last 8 months. My levels have been stable for 6-7months, but I was feeling awful for ages, even with normal levels. Your tsh is still high, so no wonder you feel terrible. I went through months of feeling like I was dying, so many strange symptoms after rai and balancing out on replacement hormone, anxiety, panic attacks etc… I have a 20 month old daughter and had to give up work for a while, I didnt cope well at all. I thought it would never end, and I would never be normal again.
I can honestly say, that although I still struggle with some issues, strange feelings/anxiety… its so much better. I feel more like myself again. Its still hard dealing with these things, I too want to be “me” and “normal” again, and not have to deal with them at all, but its getting better. When I think of a few months ago, its almost 100% better now compared to then, and i hope i’ll be even better in the next few months.
Ive rabbled on a bit, but I really just wanted to say that just like your dr and husband say, it will get better, it may just take a little longer than we thought! You are doing great to hold down a full time job feeling like this! It must be very stressful though.
Obviousley you need to keep in touch with your dr, keep him informed of your symptoms etc… and get regular tests to get you back to stable levels, but my experience is that it does sloooooowly get better!
Heather

[Anonymous]

#1020876

I am 39 and was diagnosed with graves in May 2005 and received RAI in May also. In the past year I have gained 50 lbs (25 prior to diagnosis and 25 since then). I wonder when will the weight gain stop. I am on 125 mcg of Levoxyl. My last TSH results were still 26. I’m beginning to wonder if I will ever be back to normal. I am also on Lexapro which does help, but sometimes I feel like crawling in a hole and not coming out. I work a very stressful full time job and have a family also, and sometimes it seems like I can barely function. My back, feet, and legs ache most of the time. I don’t like the person I have become, and I continue to fight these feelings of depression and anxiety, but it is very difficult sometimes. I want to be happy with myself and my life again and my Dr. and husband keeps saying “be patient” because it will get better, but I wonder. I guess I just need to hear from someone who has already been down this road before and can truly say that it will get better. Thanks for letting me share my feelings of frustration.

[Anonymous]

#1078693

Hi:

I am not now new–I was diagnosed with Graves in October of 2003 and had RAI in early December 2003. I am writing to thank you for your message as I realize that I am not alone. I understand your frustration–my TSH levels are above 30. I fluctuate like a pendulum to the extreme ends. It has been two years and I have been tested every 6 weeks and I have not had a result that is even close to normal in two years. I do not even know when to complain because I do not know what normal is anymore. I am very depressed but have never had good luck with antidepressants (I have bad side effects) in the past and am afraid they will not work well with the levothyroxine. I am getting an even more depressed when people say it will get better when it appears it is not. I am very diligent about taking my medications. I hope you do not have to wait as long as I do, but just to let you know that some of us do not appear to be very easy to treat.

[Anonymous]

#1078694

You are definitely not alone. I too am 39 and was diagnosed in Jan 2004 with Graves disease. I had RAI in March 2004 and as of August 2005 my levels are finally normal. I have gained 40 pounds and feel as though I am still gaining. I was told that my levels should go to jypo thyroid within 6 months and 1 1/2 years later I had my first normal levels without being hypo yet. My TSH has gone up quite a bit lately so I have been having bloodwork every 4 weeks. I am hoping to be hypothyroid so I can be on medication and maybe feel normal and like the old me. I think the depression is due to the weight gain, hair loss and those vain yet drastic, uncontrollable changes. I guess I feel like if I had been eating like a horse and sitting around gaining weight it is my fault. On the contrary, I work a full-time stressful job as well, go to school for 6 hours 2 nights a week and have twin teenagers and am a single Mom. So I am active. It has definitely been a frustrating journey. Overall, I am healthier in the sense my heart rate isn’t 140 resting and I don’t have hand tremors and can walk across a room or up a flight of stairs without being winded and I have to keep reminding myself of that. However, I didn’t think it would take this long and be this much of a body change after having RAI. It does help to have this message board to talk/vent to people who can actually relate. I’ve come to the conclusion though that the thyroid is a strange thing and no 2 stories are the exact same. Hang in there it has to get better. I’m still holding out hope that one day I’ll be able to lose half the weight I’ve gained and feel like the old me and not be cold all the time. I still have anxiety too and I think that is a symptom of both hyper and hypo thryoid. Finding a doctor that actually listens and doesn’t just keep telling you to be patient is helpful too. It’s hard to be patient when your whole body changes so suddenly. I hope you’re feeling better soon.

[Anonymous]

#1078695

Thanks for letting me know I’m not alone in this. I have gained approximately 50 lbs over the last year. I actually started gaining before RAI in May of this year and have continued gaining weight. I am currently on 125 mcg of Levoxyl and my hair is coming out worse than ever. I am scheduled to have more lab work on December 6th. I am anxious to see if I am still hypo. My last TSH was still 26. The weight gain has been extremely hard for me. I have never been this size before (even 9 months pregnant). I would love to hear from someone who has been through this and has reached normal thyroid hormone levels and started to see results. I am hoping that once I reach normal levels, the weight will become easier to get rid of and my hair will get back to normal. I don’t even feel like the same person I was 2 1/2 years ago. If there is anyone who can give some positive feedback please let us hear from you, and thanks for everyone’s support and understanding.

[Anonymous]

#1078696

Hi ncgirl,

I completely understand the frustration and impatience — there’s nothing worse than feeling bad, and being told to “wait, wait a little longer.” The good news is that it really DOES get better. Once your levels have hit normal (and stayed there a while, remember), the hair issues will clear up, and the weight issues will become FAR easier to manage.

The RAI that finally made me hypo was in 2001, and I reached normal levels (finally) in the fall of 2002. Now my hair looks better than it has EVER looked. I had a hard time getting to normal levels, so my weight issues have not completely resolved, but I have been feeling more like myself for the better part of two years — I’m just not an incredibly motivated person when it comes to exercise, and also my husband suffered a horrendous break to his knee joint about the same time as I went hypo, so it was difficult to get the exercise I needed in any consistent manner. We just bought ourselves an elliptical exercise machine, and I am already feeling much better — just a week later. IMAGINE how good I’ll feel in a few months. I am looking forward to it.

You will get here too. The process MUST take time, it’s the only safe way to do it. But you will get here. Sit back, close your eyes, and “take a message” from your future self: “It’s going to be okay.”

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1078697

I have recently posted about my anxiety that I have been feeling and the possibility of the anti depressants. My tsh level is in the “normal” level according to the charts but I have to say I really feel that I may be somewhat hyper. In the past when I have been slighty hyper I felt nervous and anxious. I have been having the pain in my hip, leg and thigh. I have also dropped 4.6 lbs in the past two weeks (not complaining about it). I have been doing weight watchers since the beginning of the year but for 5 months I only lost a total of 8 lbs. I am feeling very tired like I am not sleeping at night. I think it is difficult to get the doctors to listen to you when your number are “normal”. I personally remember feeling best when it was over 1.0. My endocrinologist in the past few months has left the field so I have been dealing with GP. Do you think I should find another endocrinologist?
Katie

[Anonymous]

#1078698

HI all,

I know that I am probably just being impatient as usual, but it has been 4 wks now that I have been hypo and on the synthroid and I do not feel any better……..if anything I feel worse! My face is swollen and my eyes are puffy, I am peeling myself off my bed(which is my tell tale sign im hypo) after 10 hrs of sleep and I take a 2hr nap in the afternoon and drink about 4 cups of coffee at day just to make it through the normal activities of being a mom! I call the endos office and they dont’ even want to talk with me until my 6wk mark, is this normal? shouldn’t I feel at least a little bit better? Just feeling a little frustrated since I had been feeling so great. Thanks all for listening to me whine.

Renee

[Anonymous]

#1078699

It is very normal for our doctors to make us wait AT LEAST six weeks (but sometimes up to three months. They believe that the tests are a more accurate picture of our thyroid status if we wait. The reason is this: the best test of where our thyroid levels are over time is the TSH (thyroid stimulating hormone) which comes from the pituitary. The TSH levels are a type of “moving average” of our thyroid hormone levels, which can fluctuate (and fluctuate widely if it is T3). So waiting until the TSH is stabilized on a dose of replacement hormone is important. I’ll give you an example from my experience. I was put on a fairly normal dose of replacement hormone when I went hypo. I was back in my endo’s office three or four weeks later when symptoms of pretibial myxedema developed. But she looked at me and said, “You look hypo.” She told me she normally did not adjust hormone doses this soon but she gave me a blood test (showed hypo) and she adjusted my dose upwards. And within a few weeks I was suffering from being HYPERthyroid again. There is probably nothing worse than getting things checked too soon and going from hyper to hypo to hyper to hypo. That is truly horrid on the body. So you need to be patient just a bit longer.

What you are experiencing — at least what I experienced — after RAI was a swift hormonal drop, and there were symptoms associated with that, true. But there was also a strong need for my body to be able to rest and recover from “being” hyperthyroid. I had not slept well in a long, long time. Even when I was on antithyroid meds, because they didn’t work well in my body, I was constantly fatigued. So sleeping a lot, taking naps, etc. etc. is rather normal when someone is recovering from a disease as severe as hyperthyroidism can be. I know you want to be back to normal again, right away, but our bodies need time to heal, and we need to continue to give them a lot of TLC during the healing process.

I hope this explanation helps.
Bobbi — NGDF Online Facilitator

[Anonymous]

#1078700

Thanks Bobbie,

I guess I just need to be patient a little longer. Thank-you for explaining how things went with you as well it is very helpful to hear of others experiences, as I would want to run to the endo and have her change my meds,lol. I def do not want to go the other way either so for now I will stick with my naps:). Thanks again for all you do.

Renee

[Anonymous]

#1078701

Renee,

Sorry you are not feeling any better yet. Hang in there!

Maybe they will need to adjust your dose when you go back, but don’t be so hard on yourself about resting so much. I personally enjoy my naps still, even if I don’t need them!

I guess I was lucky – my endo released me on my first visit back to her after going hypo. She said she had picked out the perfect dose for me. I feel good – energy wise – most days. I’m now dealing with rheumatoid arthritis in my feet, knees, and hands. The bloodwork and x-rays are clear (which makes me look like a hypochondriac to my GP), but the Rheumatologist knows I have it and is treating me anyway and it is working. The swelling has almost all went away in my feet and hands and the pain and stiffness is much better.

Mammaw

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