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in reply to: 2 weeks on levoxyl no change? #1068211

I go back at the end of October to get more blood work. I am feeling yucky now too since I know that changing levels can make you feel bad for a few days. It will get better I know. I am still looking for my goal of having some really great holidays this year. Keep smiling when you can Lacie.

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in reply to: 2 weeks on levoxyl no change? #1068208

Yes,
I got a weird message from the doctor to stop taking my methimazole since it looked like I had gone hypo. I called and the clinic was closed so I called his office number and got him and explained that he had already put me on levoxyl and he said "oh, then I guess you should up it to 50 mcg." I am thinking about changing offices when I get a little more settled. This doctor is fairly old and either didn’t get the message/fax of labs correctly identified with me or he didn’t put notes in my chart after he prescribed the levoxyl etc.. Not sure which but this isn’t the first sign that maybe his memory is going.

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in reply to: 2 weeks on levoxyl no change? #1068206

Lacie,
How are you doing now? Any change in your heart rate?

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in reply to: 2 weeks on levoxyl no change? #1068203

I"m now 4 weeks on levoxyl and my TSH went from 19 to 62! Is this a normal lag or is it showing that my 25mcg of levoxyl just isn’t enough to start making any difference yet? I am waiting on a call from endo this morning about whether to up the dose to 50 mcg or higher.

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in reply to: Rebecca Bahn’s Cinical Trial at the Mayo Clinic #1067899

How do you get the newsletter?

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in reply to: Well who would have thought – HyperM back at work :) #1067910

Hyperm,
Great to hear that you were able to get back to work. I know that this is a great big deal for you! Sounds like your life is returning to some stability with your Graves. Good luck with everything.

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P.S. At least you could still get into the uniform

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in reply to: Allergic to methimazole and PTU? …RAI? #1067961

Sorry I was unclear about the inactives in methimazole and the replacement hormone. As SKI said the medications are not the same but lots of medications do contain the ingredient that I think I am allergic too called povidone. It is in lots of tablets, all kinds of medications, regardless of their active ingredient. Again sorry about the confusion.

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in reply to: Allergic to methimazole and PTU? …RAI? #1067958

There are lots of people who have posted here who have been allergic to something in the medications. If you read my posts about my journey with that you can see that I was probably allergic to one of the inactives in the medications and not the active ingredient. I have been on levoxyl, hormone replacement, about 4 weeks now. I had RAI in early May. The formulation of the replacement that I am taking doesn’t have the inactive in it that was in the generic methimazole I took that causes lots of people to have a rash. I haven’t had any troubles with rash on this. You might want to check and see if the inactives in the PTU and the Methimazole had any overlap. I mean the same inactive ingredients. If they did then it might be that you were allergic to these. I don’t know if you can check to see if you were allergic to a specific ingredient. Your pharmacist may have a suggestion. There are several different companies that make the hormone replacement and they don’t all have the same inactive ingredients. You don’t have to take synthroid, you can take one of the other brands out there. Try googling for pictures of your tablets if you still have them. The pictures can help identify the manufacturer of the tablets if it wasn’t on the bottle.

Good luck,
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in reply to: Is it ok to be fearful of having RAI? #1068011

It wasn’t the RAI that affected my driving it was the fact that I didn’t feel well enough to do it. I drove off and on during the last two and a half years I’ve been going up and down with different levels with my Graves. The RAI in and of itself didn’t do anything to me that stopped me from functioning other than during those first few days.

I got to go see Cirque Dreams "Illumination" in Durham, NC. It was good but we were up too high in the balcony. I don’t like high places, never have.

I would go ahead and tell people if you can make yourself do it. You will be surprised, I hope, with the support that you will get. Your family, especially those that are blood relatives, should be told eventually if not now. Graves is mystery to some but sometimes you’ll find that someone else will say oh I have experience with that and it can be helpful to have someone live to talk to.

The long-term effects of the RAI are to kill your thryoid tissue and nothing else. I haven’t heard of anyone who had Graves and RAI having any issues directly related to the radiation. There is a small chance that it can affect your salivary glands which is why they tell you to drink , drink, drink and suck on candy and chew gum in the first few days. If you have TED then RAI isn’t usually the best choice but I don’t know if that’s directly related to the radiation.

My peace started to come very soon. That said it wasn’t an overwhelming feeling that has stayed in the forefront every day. Each day brings new challenges no matter what your health. I read something today in a magazine that said Man makes plans and God laughs. I guess that’s true that we can’t control everything.

I can now say that RAI was a great choice for me and that I highly recommend it from my experience.

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in reply to: Is it ok to be fearful of having RAI? #1068007

Hi,
I too was worried about not being able to get into the hospital to have my RAI. I think my fear was different than yours though. I had wanted this treatment for so long and was denied it a year earlier. I was worried that they would say no again. The worst part for me was just the waiting around to suck up the radioactive iodine through the straw. After that mentally there was a big weight lifted off my shoulders. The next few days were alright even though I felt bad physically. I knew that something "good" was happening to me. I was going to get healthy again. It has been almost five months since my RAI and I started levoxyl three weeks ago. I got to go out with my family last weekend to see a show. I am driving myself to work again. I have been able to think beyond feeling sick to do projects around the house again and helping my daughter more with school work etc..

I think you should ask someone to go with you to the appointment. I don’t think you sound like you’re in the frame of mind to go by yourself. Support is a great thing and I am not ashamed to say that I probably should have asked for more of it in my life.

You will become healthy again. It is a long road, longer for some than others, but just think of it this way. The days will pass whether you have the treatment or not. Do you want them to be passing toward becoming healthy or just pass with you still feeling sick and not being able to cope. Thinking like that is what has helped me realize that I can make it through this.

I wish you luck with your preparations and I hope that you will find some peace after your RAI.

Keep asking questions.

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in reply to: Howdy #1068020

Cathy,
Glad to hear that you are able to cope with all the things you need to now. I am looking forward to that too. I have been on levoxyl for three weeks now and I hope the clouds will be parting soon. Fall is my favorite time of year and I hope to enjoy it. Hope your daughter is getting better now.

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in reply to: Weigh-in (just for fun) #1068758

I started seriously on the Weight Watchers regime again and have lost a couple of pounds, probably water. I have realized over the last few days that I really am not as hungry as I was when I was hyper. Drinking enough during the day and keeping track of it has helped that. I am three weeks on my levoxyl and starting to feel like it might really be doing some good. I had a bad episode with vertigo yesterday. Can’t figure that one out. I really had vertigo badly when I was really hyper. Maybe it’s coming back the other way toward normal that’s causing that. It was much better today.

I haven’t really started exercising yet on a consistent basis. I feel like getting myself to and from work with some housework thrown in there is good. My afternoon naps are getting shorter too.

Keep up the good work everyone.

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in reply to: 2 months post RAI and HYPO, HOORAY! #1068075

Congratulations Lacie,
I know that you are excited. I am now three weeks on with my 25mcg and going through ups and downs with things readjusting. Blood work next week to see if we need to readjust the dose yet. I hope you have an easier time. I remember that same feeling of trepidation taking the first dose. Great news! Celebrate a little, it is a BIG DEAL.

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in reply to: how do you get over the anger? #1068094

Your RAI does will be based on your uptake test results and your personal disease details such as if you have a goiter etc.. I had 15 millicuries. My uptake was around 35-40% at the time I had my RAI. A year earlier it was around 70% so it might have been a little lower dose of RAI. You want to make sure that you are getting enough to try and make sure the job is done the first time. SKI on this board has lots of posts about RAI and how her first dose didn’t work. She is one of the facilitators. Her name will show up as green. You can click on her name and see all of her posts or search for RAI. It’s worth your time to try and read back in the posts here. It might answer a lot of your questions or help you think of ones that you need to ask when you go see the nuclear medicine folks. Ask for written answers, paperwork to show you what you need to do and not do and for how long. It will be hard to remember since it can be a really emotional experience for some. I was just worried that my legs wouldn’t work to take me into the hospital. I had waited so long to have the treatment that I wanted I wasn’t really sure I would make it through it. I had had it denied to me the year before because my levels were "too" normal.

Now that you’ve made a decision it should be a relief on some levels. I wish you luck with your treatment. Let us know how it goes.

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in reply to: Is Doing nothing an option? #1068147

Hockey,
Where do you live? Here in the States the usual time away from people, while being the same house, is between 2-5 days depending on your dose of RAI. I don’t think that RAI for Graves disease treatment is usually a large enough amount to keep you away from home. There are precautions but only for a few days. No sharing dishes, beds, holding small children close to your throat for any extended length of time, flushing the toilet twice etc.. You may have been reading about Radiation for thyroid cancer that is at a much higher level. Talk to your endocrinologist to see if you can talk to a nuclear medicine person if you have questions. There are some great posts here in the archive about what taking RAI really means as far as being on restrictions. It’s not as bad as you seem to think. That said you have to make your own decision about the three choices for treatment, surgery, RAI and drug therapy. My RAI was my choice after drug therapy didn’t really work for me. My kids were teenagers so I didn’t have the holding them issues. I had it about 4 and half months ago and have started my replacement hormone in the past two weeks. It is hard to live with Graves but you can come to peace with your treatment no matter what it is you need to start to get things under control if they are not.

Good luck with your decision.

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