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in reply to: RAI update #1067186

HI,
Yes RAI is Radioactive Iodine the same thing as ablation therapy. People here do understand so ask anything. I remember crying and crying and feeling like I was myself in another body that wasn’t doing what I wanted or needed. It stunk. Keep reading the posts here and you will find some answers but remember that all Graves patients don’t have exactly the same reaction to treatments or symptoms. I wish the doctors would remember this more.

Hope you start to feel better soon. When is your RAI scheduled for? You just said January.

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in reply to: Hyper after RAI #1067160

A regular heartbeat! I know how you feel. The fog starts to lift when you know that you are going to get better.

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in reply to: RAI update #1067180

Sallie,
I hope that your next results are good too. I had my tsh go way down to almost nothing before I went hypo so don’t be surprised if it goes the wrong way before the right way. I hate all the waiting too. Glad that your palpitations are gone. Isn’t that great? I hated them. I still have hand tremors every once in a while when I am very tired but that’s getting better too.

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in reply to: Weigh-in (just for fun) #1068794

Hey Lacie,
Glad to hear that you are doing so well. I am on 62.5 levoxyl and getting labs next week after the holiday rush. I was at 33 tsh last time I had labs. I am still losing weight slowly and that’s probably best. I am able to do more and more each week and am pushing some as I think that’s the only way to get back to something more normal after being sick for two years.

Hope that you have a great holiday with your family .

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in reply to: WBC low…what’s next? #1067255

I never had a low WBC but did go hypo on methimazole at one point. I went totally off the drug later and didn’t go into remission but it took me 9 months to go really hyper again while I was waiting for RAI. Hope that you get things straightened out soon. It can be very dangerous to have you WBC off from the medicine.

I always ask for my lab results to be mailed to me as well as by phone so I do have a paper copy to keep.It can be hard to remember your numbers.

Feel better soon.

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in reply to: Recent Thyroidectomy, What should I expect now? #1067279

Michelle,
Just wanted to say that I am sorry that you are having so many troubles. I did not have TT but had RAI and have been going up and down too. It will get better. You can moan all you want to here no one will say that they haven’t had those same feelings of hopelessness etc.. here. Graves stinks and it is hard to get your mind around when you are feeling so ill. Hope that the sun shines down on you today. Did they say whether or not you could use some of that throat numbing spray for sore throats?

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in reply to: Weigh-in (just for fun) #1068791

Hyperm,
What happened with your lumpy feeling in your neck?

Just worried about you there.

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in reply to: Post RAI changes in muscle and other feelings #1067290

I have only been on replacement for about 2 and a half months. Only two weeks on the 62.5mcg.I guess it is early days yet. I just really hate that feeling that comes when I get the "old familiar" pangs of something being wrong. I think that maybe you are right about the hormone changes from other things making a difference sometimes. I am possibly going through menopause too so that isn’t helping. LIke just now I had an episode when my BP went up really fast and my pulse was up. I had some caffeine for lunch…… I have really tried not to have any of that in a while. We are also getting a rain storm and I’m exhausted from yesterday’s big project at work. I just wish I could know what the numbers were doing more quickly. I guess if things still feel really off I can call and talk with my endo. I am in the process of losing weight too= 8 pounds of the 25 I put on when I was really hypo on methimazole a year ago.

Thanks for the good vibes. I hope to be feeling better soon too.

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in reply to: Newly Diagnosed…Would Love to Talk About Shared Symptoms #1067282

Hi,
had RAI on May 8th glad I did. It was my first choice and it took me two years to get what I wanted. It’s not easy and a lot of your symptoms are ones that others here have had. You can read all of one person’s posts by clicking on their name, like ewmb, and getting a listing. the foggy definitely, the itching I didn’t have, the dry skin not so sure but I did go through some nose bleeds at one point, The hunger…. oh so much, I used to eat and feel like I could eat a whole anything and still be hungry a few minutes later.

hang in there and keep reading. It’s so nice learn here that others have gone through what you are going through.

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in reply to: First set of results since RAI- Confused!! #1067305

I don’t know about others but I took four months to get numbers that suggested hypo. Then i started replacement hormone and have gone up from 25 mcg, to 50mcg, to now 62.5 mcg. I am having blood work done every four weeks as my levels change. I haven’t heard of anyone here that I can remember that didn’t take 2-3 months to get some numbers that suggested hypo. One of the facilitators might know about the time line.

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in reply to: 3 week post-RAI update #1067313

Yes,
some days better some days not. I am still experiencing ups and downs as I try to get to a dose of replacement that fits me.

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in reply to: First set of results since RAI- Confused!! #1067301

I think it’s too soon to say it didn’t work. My numbers went south on me too after RAI and I went back on methimazole for a short time to help me cope. I had been off for almost 11 months at that point. It took me four months to show that I had gone hypo. Keep thinking about how you feel right now and your numbers will hopefully come in the way you want them to in a few more months. I know from experience that it’s really hard to wait though.

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in reply to: 3 week post-RAI update #1067311

Nick,
Hang in there. It took me 4 months to show a real change toward Hypo numbers to say that my RAI had worked. I went lower and lower on my TSH until then. It will change it just takes too much time!

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in reply to: Scared to eat too much… #1067315

I gained weight, about 25 pounds, when I was hypo on methimazole and since I’ve been getting more toward normal on my levoxyl replacement hormone ( now on it almost 3 months) I feel like my body is readjusting itself. I have had to go back to my Weight Watchers training to get back on track but have already lost 8 pounds. I will tell you that I would rather feel well and be a little larger than to be so skinny again and feel the way I did when I was very hyper. I have not really started to exercise again but am able to do more every day. Today I painted my front door! I think how long you’ve been sick with the Graves may have a lot to do with weight ups and downs. I was sick for 2 years even on methimazole I didn’t feel right. Think of the weight change as just a reaction to your body recalibrating after being sick. You might actually feel a lot healthier at another weight. That said I know you don’t want to become clinically overweight or obese as that is unhealthy. Check out your BMI number somewhere on the web and you’ll probably find that you can cut yourself a little slack number wise. Just as some people don’t feel well with a "smack in the middle normal TSH" you might or might not feel well at a higher or lower weight.

I am trying to focus on getting healthy again and I think the weight will come off and I will not be so worried about it as I have other things in my life besides always thinking about how I feel. I am going through menopause now too and I know that that known hormone change can produce some weight gain. It’s all a part of life……

Keep thinking positively…….

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in reply to: Have ALL symptoms of Graves for 5 years, NO DIAGNOSIS still! #1067320

Have you had a thyroid scan or ultrasound to check for nodules?. I have had no nodules with my Graves but have a friend who does and when his act up he gets the symptoms of hyperthyroidism and then when the nodules are quiet his numbers go more toward normal. Sounds like you are up and down a lot over the past 5 years. Have you had more than one opinion from different endocrinologists? Do you live near a teaching hospital? They might have more patience with trying to find out the answer to your puzzle.

Remember that you need to let any doctor know that YOU want to be treated not your test numbers. I wish you luck with finding out something soon.

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