[melissa]

in reply to: Post RAI and Hypo #1061079

Thank you both for your kindness and advice. I really appreciate it. I’ll keep you posted.

Melissa

[melissa]

in reply to: Post RAI and Hypo #1061076

Hi Susan,

I was so relieved to hear you say that you changed endos because you felt insignificant and unheard. That’s exactly how I feel about my endo, but I’ve been telling myself that I’m just being silly.

I was diagnosed with GD in May and have seen my endo once. I was put on methimazole and was on it for about 6 weeks when a physical with my GP showed that my liver enzymes were elevated so my endo did call me and told me to stop the meds–she recommended RAI and said that having to take one pill a day for hypothyroidism was a reasonable trade-off. I told her I needed to think about it and she said that was fine and told me to call her if I felt ‘jittery’ and she’d prescribe a beta blocker for me. She also asked me to come in and get a blood test at her office so she would have a record of my bloodwork. This was on July 14th–When I went to get my blood drawn there was no order for labwork (which didn’t make me feel great), but they got one and I was able to get my bloodwork done. I called her triage line the next day and asked for a prescription for a beta blocker since we were heading on vacation for a week and my pulse was moving up and I was starting to feel sypmtoms again. The nurse called me two days later and asked if my endo had told me that they had ordered a prescription for me at my drugstore–my endo hadn’t. I called before I left for vacation to see if I could talk to my endo about the RAI–I have a lot of questions, but she was at the hospital that week and the nurse said she’d have her call me. No call. I called again today, but my endo’s on vacation. She did send me a note with a labwork order stating that I should get my bloodwork done again to check my liver enzyme levels in the next two weeks and a note restating that I should do the RAI and that it was a reasonable trade-off.

I liked my endo when I talked to her, but I do feel like ‘just a patient’ like you said. My daughter has had GD for almost 4 years and her endo is the chief pediatric endocrinologist at Duke–he gave me his email at our first appointment and encourages me to email him any time I need to even though he’s super busy. He listened to my GD story and encouraged me to get the RAI aknowledging that there are some downsides to it. I told him about some of the problems I was having with my endo and he encouraged me to get her email to bypass the ‘gatekeepers’, but when I asked the nurse if I could correspond with my endo through email she said the best way was for her to call me.

I don’t think I’m asking too much to have my endo sit down with me and explain the RAI procedure and how she will treat me after the RAI–I want to hear the up and down sides, not just platitudes about how it’s a reasonable trade-off. Given how I’ve been treated so far by this office, I’m worried about their responsiveness after the procedure.

Sorry for the long post, but I’ve been struggling with this and was in tears this morning feeling frustrated, but silly for feeling that way at the same time. My Mom is going through chemo for a very aggressive uterine cancer and I’m whining about a minor procedure…..

Thanks for listening,

Melissa

[melissa]

in reply to: Allergic reaction to Methimazole #1061549

Thanks so much to you both for your advice and reassurance. I’ll keep you posted!

Melissa

[melissa]

in reply to: Allergic reaction to Methimazole #1061547

I’ve thougt of that too–why would I risk damaging my liver when I can live a healthy life without my thyroid? I guess it’s just a matter of readjusting my thinking. Since my daughter had such a successful outcome (for now, I know) with the ATD I assumed that my route would be just as simple. It is proving difficult for me to wrap my head around the fact that I am going to have to undergo a ‘definitive’ treatment. I’ve been very healthy all of my life and very active. I guess everyone on here has dealt with this feeling at some point—or will. So now it appears I have to decide between rai and a thyroidectomy. I am not thrilled with what I have read about rai, but think I’m crazy to even consider having surgery if I don’t need to. I’m 48, so I don’t have to worry about rai and pregnancy, but I just don’t like the thought of thought of rai and the uncertainty of constant messing around with meds to get the right dosage–I’ve read so much about people who feel bad years after the procedure and I don’t want that to happen to me. I also don’t want to deal with the TED problems that seem to crop up with rai–but reading Shirley’s posts, it seems she’s dealing with it now even though she chose the surgical route. I’m also very conscious that my daughter might have to face these same decisions in the not too distant future–I want to approach this in a sober, but not a ‘this is the end of the world’ manner so she knows that it’s nothing to be afraid of.

So, I’ll take the advice I’ve found here, make a list of pros and cons, talk to my endo, and make a decision—sounds easy, right? ” title=”Wink” />

[melissa]

in reply to: Allergic reaction to Methimazole #1061545

Thanks Kimberly–I appreciate the info and the advice. I might try to see another endo for a different perspective as you suggested.

Have a good night!

Melissa

[melissa]

in reply to: Allergic reaction to Methimazole #1061543

Hi Kimberly,

Thanks so much for responding to my post– and so quickly too! Thank you also for this wonderful resource.

I did get some more information that doesn’t look good for my staying on the ATD’s or methimazole at least. I requested my labs from my GP and picked them up today. I found out that before methimazole my enzymes were: AST 41 (normal 0-40) ALT 70 (normal 0-40). My most recent labs on July 13 were a lot higher: AST 80, ALT 160. My endo also had me get some more bloodwork done at the lab today to have a record at her office. I guess I’m still wondering if PTU is out of the question for me because of this. I was feeling so much better on the meds–it just stinks that it was affecting my liver adversely. My endo wasn’t pushing rai initially and wanted to see if I would go into remission on the ATD. I asked her about the PTU when she called, but she sounded very ambivalent. I told her I needed some time to think about what to do and she agreed that it was a big decision. The only problem is that I feel like a ticking time bomb because now I’m not on anything (been off methamizole for 4 days now and going on vacation next week) and from everything I’ve read here I can’t do rai or a thyroidectomy if my levels are high…I just don’t want to rush into anything but don’t believe I have the time to think everything through as much as I’d like.

Does anyone know if PTU is out of the question because of my elevated liver enzymes? Does it affect the liver in the same way methamizole does? Any answers would be so appreciated!

[melissa]

in reply to: Allergic reaction to Methimazole #1061541

Hello–I’m new to this board and not sure if I’m posting in the right place–I hope I am!

A little background first…I was diagnosed with Graves’ in June of this year. My middle daughter who is now 14 was diagnosed with Graves’ in 20008, was put on methimazole and developed an allergic reaction. She was then put on PTU, was on it for a year and went into remission. She’s still in remission now and doing really well.

I too was placed on methimazole after a sick visit to my GP revealed that I was hyperthyroid. I was on 10 mg from June 9th-June 29th, and when I got in to see the endo and my bloodwork came back positive for Graves’ my dose was upped to 20 mg/day since I was still quite out of breath and shaky. My bloodwork also showed elevated liver enzymes (ALT 96 normal 14-54, AST 51 normal 15-41). My endo said we’d keep an eye on this since hyperthyroidism can cause elevated liver enzymes and my liver enzymes were elevated in the bloodwork taken by my GP prior to my being on the methimazole. I’ve been doing really well on the methimazole and was starting to feel really good when I went in for a physical with my regular doctor last week. The bloodwork showed that my liver enzymes were still elevated. She called my endo who promptly called me and told me to stop taking the methimazole and that the safest thing to do would be rai–I asked her how elevated and she said the AST was basically the same but the ALT was 3x normal.

At this point I had been on methimazole for a total of 5 weeks– 3 on 10mg and 2 on the 20mg dose.

I am not convinced that the methimazole is causing the elevated liver enzymes. I found this study: http://www.ncbi.nlm.nih.gov/pubmed/18001177
that states that it is not conclusive that ATD’s cause liver issues in Graves’ patients. I was wondering if anyone on this board has had liver issues on methimazole and if so what did they do? Also, if it is the methimazole that is affecting my liver is PTU out of the question? I’m just not ready to do RAI–I’m still getting used to the fact that I have Graves. Any input would be very appreciated!

[Author]

Posts