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in reply to: the rai is working:-) #1070048

I was told not to ride in a car for more than an hour with others on the first few days after RAI. You would probably feel more comfortable at home. You will have to use a separate toilet facility if possible and flush twice. You will have to use paper dishes or wash yours separately. You may have some sore throat feelings and/or swelling in the first few days. You will have to drink a lot or suck on candy to keep your salivary glands moving. Having gone through it I will say it wasn’t so bad that I wouldn’t do it again but I don’t think I’d want to be in a car for a long time or on vacation. I needed to sleep a lot those first few days. You will also not be able to be close/hug/ sleep with your husband for a few days how long will depend on your dose of i131. If you are going to a cabin or place where you can do all this is might be worth the trouble or it might be better to wait until you get home.

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in reply to: Weight gain during Graves disease #1071006

When I had really loose bowel movements I started taking acidophilus tablets and they seemed to help get my gut flora back on track. Also I ate one coconut macaroon ( a cookie or biscuit) a day. I don’t know what you have in Australia that is similar but you should have something. I have relatives there and we’ve shared recipes some. The coconut really did help stop the diarrhea. Also heard that blueberries are good for helping stop it too. We have a radio program here called the People’s pharmacy. You can google it and find some really neat home remedies that might help you out.

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in reply to: the rai is working:-) #1070045

Good luck with everything runlacie. I too had RAI about two months ago and am happy with the results. I wasn’t on ATD for about 9 months before it. I had been on them before that. I think it might be easier coming down from the RAI if you haven’t been on the ATDs but I don’t really know. Ask any questions you have and I’m sure someone will answer them.

Glad for you that you made a decision. It feels good doesn’t it?

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in reply to: Hey Ski, I have a question? :) #1070024

Ski,
Did the stopping the aspartame make you feel any different? I know it’s not the cause of Graves but do wonder about it. I have tried some soda with splenda. Like you I don’t always want water and I don’t do tea or coffee. I’ve always had caffeine free soda but maybe I need to switch back to more juice. I just didn’t want the calories.

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in reply to: Is it a bad day? #1070103

A lot of people with Graves can have vitamin D deficiency. I am taking 2000mg a day now and did feel a lot better not long after I started it. It doesn’t fix everything but it is a help. If you start calcium you need to take with the Vitamin D for absorption to be good. It’s useless otherwise. I now have osteoporosis at age 45. It’s worth getting checked out if you have a family history.

Enjoy your three day weekend. Get some good rest.

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in reply to: the rai is working:-) #1070038

Great to hear. I am also noticing symptoms are abating. I will have blood work again in about three weeks. I hope to see a change for my tsh too. How are plans going for your return to school? Have you found a place to live etc..

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in reply to: Is it a bad day? #1070097

Julies,
You’re right about your job. It can be humbling to have a disease that can put some people into the situations that you work with I’m sure. I had to learn to make myself rest some everyday even when I was going to work. Treat yourself to a bath or some quite time or music that makes you feel better. I did find that having a schedule each day made me feel more sane. Having kids at home helps that a lot. Some days I made a list just so I could feel like I had really done something that day even if it was little like take out the garbage.

I hope that you feel better some tomorrow.

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in reply to: Is it a bad day? #1070094

Julies,
I have had ups and downs in the past 8 weeks but overall I am much more in control. I wanted to have RAI two years ago when I was first diagnosed and was talked into medication which didn’t really work for me. I had to change from PTU to Methimazole and it made me hypo pretty quickly. Then I went off and was nine months until I was hyper enough again for the doctor’s to offer me RAI again. I felt sick pretty much the whole two years. Some of the symptoms abated when I was on the medication but not enough to say I was in remission for myself. I may have met the clinical definition but not my personal definition.

One thing that has really changed is my anxiety. I feel now that I have had the radiation that I am on a path to recovery not just more limbo.

Are you feeling better now? Take things a few hours at a time and talk to your employers about your situation. I was able to do some work at home during the worst times so that I wasn’t always having to go to the office. The getting up and going was the worst sometimes.

I did have to learn to watch my caffeine intake and chocolate. They both made my heart rate go up. I was on beta blockers for a short time but they made me feel so foggy that I couldn’t think. It may not be the PTU making you feel so bad right now. Are you on beta blockers right now? If so you might ask about taking half as much as you are. The foggy feeling is very common with beta blockers.

Call your doctor if you need to or the doctor on call at the practice. They will call you back and may have some helpful suggestions.

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in reply to: Is it a bad day? #1070092

Julies,
I was just leaving and saw your post. I remember feeling really awful when I went on PTU. Is this happening a certain amount of time after you take the PTU during the day? It really did make me feel some of the symptoms that you are feeling. Graves can really make you feel so many things. Is your heart rate up or your BP? I bought a home BP cuff so I could get accurate readings on my pulse and my BP when needed. I couldn’t count fast enough some times! The shortness of breath can be scary. Before I was finally diagnosed I ended up in the ER one weekend thought I was having a heart attack. I also had great chest pain. I wouldn’t feel bad calling your endocrinologist and asking him what to watch out for. I used to take things about 12 hours at a time. I would also check your medication inserts for side effects. Taking many meds at once can sometimes be a problem. Your pharmacist can help you out there too.

Hope that you feel better in a few hours. Hang in there……. I had RAI about two months ago and I am still dealing with symptoms but some of the anxiety is gone now.

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in reply to: no dairy products? #1070108

While I was hyper I developed lactose intolerance. I think this may be why some doctors say limit dairy if it starts to bother you. It went away when I was euthyroid on medication. I have had RAI and an now waiting to see if the intolerance goes away again.

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in reply to: family member newly diagnosed #1070228

Hi,
I remember that when I was very hyper I didn’t have the rage I had the opposite problem. I withdrew and cried a lot. I think that everyone reacts to this somewhat differently but it does seem to affect everyone’s emotions at some point. Keep on thinking about how it will get better but I would let him know that you will take yourself and your child out of the way if you think he’s getting too angry. Your child doesn’t need to be subjected to that. It might really scare him. Hopefully when he gets some treatment started things will settle down. Graves is a hard thing to go through as a family.

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in reply to: Weight gain during Graves disease #1071002

Sounds like you might be having some symptoms that aren’t just from weight gain. Are you having constipation? You might really want to have a doctor check you out. I don’t think in all the times that my weight has fluctuated, sometimes over 25 lbs, that I have had a stomach that is hard even though there is extra padding there. I started taking acidophilus tablets when I was hyper and had to deal with the diarrhea and it made a difference for me. It helped my gut get back to some kind of normal. This in one of the good bacteria that you can get in some of the yogurts but I think the tablets contain more than the yogurts.

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in reply to: Headache, nausea, dizzy after RAI #1070273

I was warned by my nuclear medicine doc that some people have stomach upset with the RAI. He said to try and keep something in my stomach and eat every few hours for the first few days especially. I did have swelling in my salivary glands too and some pain but that really only lasted two days. Keep sucking on something or drinking. I was told that I could take OTC pain relievers if needed. This really bad phase only lasts a little while in the bigger picture of having Graves for so long. I am now six weeks out and I wouldn’t go back. It hasn’t been all a bed of roses but I know that I am on the way to a better quality of life in the long run.

Hope you feel better soon.

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in reply to: stat bloodwork back… #1070303

I am only a few days ahead of you. Had my RAI on May 8th. I thought I was getting much better and then about two weeks ago I started back with symptoms again. I really wasn’t happy about that. I think that some of it is related to my "womanly" hormone schedule. I had a horrible night sweat last night and then my period started this morning and I suddenly feel so much better again. Ski wrote me back that things would be muddled for a while. I hope that now I am past the six week mark that I will really start to feel a bigger change for the better. I know that it takes time and some days I am very impatient.

Hope you are feeling better today.

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in reply to: RAI tomorrow…..very nervous! #1070346

Hi,
I’ve just been through RAI six weeks ago. I did have a few bad weeks but am much better now even though my numbers just came back and still say that I’m hyper. You can read posts from me if you search for my name ewmb. I was very nervous too but knew that RAI was the right thing for me.

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