[amosmcd]

in reply to: Starting PTU today or tomorrow #1175834

Hi, Shirley–

Yeah, I’m not too happy with my endo. I couldn’t believe he wouldn’t give me a referral. Maybe he thinks if something went wrong during surely, I’d blame him–fat chance since he’s dragging his heels about the whole thing

I think he thinks his reasons are legitimate, but I want to at least speak with a surgeon about TT before I make a decision.

Not looking forward to starting the PTU tomorrow. Just gotta cross my fingers it doesn’t sedate me like the MMI, but the first listed of common side effects is drowsiness.

I’d love another endo’s name. I’ll PM you now.

Thanks, Shirley!

Amy

[amosmcd]

in reply to: Starting PTU today or tomorrow #1175833

Hi, Catstuart–

I was on 10mg of Methimazole to start with back in Sept, then it was tapered down to 5mg the last month I was on it. I wanted to be on a smaller dose of PTU. Sounds like it’s not that that much different than the 10mg of Methimazole. I don’t want to take the PTU 3 times a day anyway, plus I responded pretty quickly to the MMI (tired of typing Methimazole!) and I’m sure my endo doesn’t want me to get hypo again.

I’m frustrated with my endo. He asks what I want to do and when I tell him, he says no. It’s only adding to my anxiety.

I’mhoping my friend will not be diagnosed with anything serious (they are looking at Lymphoma as a possible diagnosis. She will find out more after a CT scan tomorrow. She is scared, I am so worried. More anxiety.

Thanks for your post.
Amy

[amosmcd]

in reply to: Graves’ and anxiety. husband making me sick? #1175704

Hi, Vanilla Sky–
I’m so sorry you are feeling so bad! I can imagine you’re feeling so doctored-out after your previous issues and now Graves. Maybe your husband feels helpless and is trying to control things to reduce his own worry and anxiety? Still, probably not wise to have done this without consulting you first. Do you have a female GYN? I hated annual exams when I was younger and most GYNs were men. I feel like at least a female doc has all the same equipment so it’s not so embarrassing.

I think waiting until you feel ready to tackle a GYN exam is okay, as long as it’s not going past any specific date your doc might have given you, if they did, for your previous issues. I always get an annual exam, but it never works out to exactly a year apart. But I have no history of any GYN problems.

I wish I had words of wisdom to give you, other than maybe let your endo know how anxious you are and how the beta blocker is affecting you. I hope things get better for you soon.

Take care,
Amy

[amosmcd]

in reply to: Well, I’m getting hyper again… #1175677

Thanks for the support everyone! I got my labs drawn today, but they won’t have all the results in until Tuesday. This time, my endo is testing FT3, FT4, TSH, TPO, TSI & CMP. I didn’t have an appt so didn’t talk with anyone. It wasn’t until last night at work that I realized I was truly hyper. It just sort of snuck up on me. It was very busy the second I got to work and I was almost panicking over doing something that should not cause me to react that way. At least I was off work today & the weekend. My heart rate at the moment is only 68, but it’s pounding in my chest. It would take a lot for me to cancel my trip. Im pretty heat tolerant even when Im hyper, and it probably will only be in the mid-60’s to 70 when Im there. It’s the Methimazole I just don’t tolerate we’ll and was hoping I would stay hypo or euthyroid long enough to not have to go back on it until after my trip. But not much I can do about it. At least it works, and maybe I’ll tolerate a much smaller dose. If I feel worse over the weekend, I can always call the on-call doc.

Thanks again for being such a great group folks. I feel like I can vent when things aren’t going well. But I’ll try to post when they are going well, too!

Amy

[amosmcd]

in reply to: Saw Endo this morning–off Methimazole! #1175233

Hi, Caro!

I’ve been off it for 10 days now. I feel SO much better! I wake up now about an hour earlier than I had been. I go to bed at my normal time. I’m not tired at work. Only have needed two naps in 10 days. Once I’m awake, I’m awake. I’ve been able to get out and go for my walks every other day like I used to. My brain fog is almost gone. (Some of it is just due to being almost 55–lol!)

Tomorrow (Sunday) morning I’m walking in my very first 5K! I’ve been trying to get faster and hope to finish in around an hour, but maybe less. My son will be running in it and he hopes to win! I can’t run because I have a bad back.

Anyway, just wanted to let you know that I’m feeling a lot better! Hope you are doing okay.

Take care,
Amy

[amosmcd]

in reply to: Saw Endo this morning–off Methimazole! #1175227

Hi, Naisly–

I think my endo is simply expecting that since he took me off the Methimazole, I would most likely become hyper again. He’s rechecking me in 3 weeks (well, 2 weeks now) so we’ll see. I feel really good right now off the Methimazole. It was not a good drug for me. It may have worked, but I didn’t tolerate it at all.

I do have Hashimoto’s as well as Graves. I have antibodies for both. That’s why he thinks I’d do better just to have my thyroid ablated so I don’t have these ups and downs.

I was not severely hyper as some people have gotten on this forum. Didn’t need beta blockers. My heart rate never got above 108 and that was not all the time. The palpitations didn’t become a problem until right before he put me on the Methimazole. I did lose a lot of weight, but I’ve regained 7 pounds. Really don’t want to gain any more. Within a week or two, the palpitations were gone and my heart rate was back to normal. I’ve been able to continue exercising the entire time, with my endo’s knowledge. My heart rate never got more than 120-30 during that, because I was in shape before I got hyper.

I feel like my endo knows what he’s doing. I go by how I feel along with how my labs are. I was way hypo for me. A TSH of a little over 4 may not feel bad for most folks, but I do best when my TSH is no higher than 1.5. I’m sure it’s dropping since I’m feeling better, but I’m also off the Methimazole, which was a nightmare for me.

I had an ultrasound back in 2009 and I had no nodules, but I want to find out if I do now. I just thought the I-133 scan was necessary to look for “hot” nodules.

What’s the difference between a TgAb test and the TPO antibody test for Hashi’s that I had?

Thanks for your concern and post!

Amy

[amosmcd]

in reply to: Saw Endo this morning–off Methimazole! #1175225

Hi, Caro–

I started at 10mg once a day, got slammed with the brain fog and sedation, so divided it into 5mg at noon and 5mg at midnight (good hours for me.) It didn’t make any difference. The brain fog mostly went away after 2 weeks, but not totally.

I got my labs checked 6 weeks later, and my labs were close to normal, so my endo dropped me to 5mg (which I split into 2.5mg twice a day.) No change in the drowsiness.

Then a month later the labs showed I was hypo. I haven’t been hypo in a long time, a few years. All I knew was I felt awful and couldn’t stand it anymore when I called his office and asked to come in early. And then he took me off the Methimazole. So going lower than 5mg wasn’t an option. I don’t know how low a dose I could take and still not get the side effect. I’m hoping I never have to find out.

How the sedation felt was that about 3 hours after I took the noon dose, I would get socked with feeling incredibly drowsy. Since that’s when I start work, it was very inconvenient! If I had a day off, I would take a nap. I’d be tired around midnight or so and fall asleep. I’d sleep fitfully, and felt like I could sleep for days. I slept between 11-12 hours a day. If I was woken up by anything (my cats especially) I would be SO irritated!! I’d get up around noon and start the whole cycle all over again. I just felt heavy with fatigue all the time.

Now that I’m off it, I notice I can wake up at an earlier time, and not feel like strangling my cats if they wake me up earlier. (I do love my kitties!) I’m alert at work and don’t drag so much through the day. I want to get back to waking up at 10 or 10:30am instead of an hour later. It really eats into my free time, and it makes me feel so lazy and useless.

It was especially frustrating to feel so sleepy and not be able to drink a cup of tea to wake me up (I’ve been off caffeine for almost 3 years.) I did drink a cup a couple weeks ago in desperation and I was so agitated at work it was horrible. At least I can eat chocolate.

I hope you feel better soon. This disease and its treatments affect everyone so differently. It’s really frustrating.

Amy

[amosmcd]

in reply to: RAI and cancer risk #1175320

Hi, Bobbi and Kimberly–

RAI was my endo’s recommendation based on the general risks of RAI vs TT, not specific to me.

I will ask him in a few weeks for a recommendation for a head and neck surgeon I can talk to about the risks of TT. I’ve heard from this forum what most of them are, but I want to hear it from a surgeon. I’m lucky to have learned from the forum to use one who does them frequently and has a low complication rate, so I’ll find that out even if my endo recommends one in particular.

Thanks for everyone’s comments! I don’t want my vocal cords damaged, either, nor do I want problems with my parathyroids. Both treatments are scary serious, and not to be taken lightly.

Amy
p.s. Kimberly, thanks, I’ll check out that thread!

[amosmcd]

in reply to: Saw Endo this morning–off Methimazole! #1175223

Hi, Caro and Catstuart–

I asked for a prescription for Metoprolol after reading about how so many forum members were on it, but never needed to take it. So I’ve never been on it. My liver enzymes have been monitored since I started Methimazole, and they have always been normal.

I really have thought of everything it could be, but since this sedation effect started the same day as I started Methimazole, I have to believe it is the cause. I think I’m just sensitive to it. It worked very fast with me, on a small dose. I wish I’d gone in sooner to have my labs checked to have prevented my drop into being so hypo now, but I did go in 10 days early at least.

Most people on the forum don’t seem to have a problem with it. Lucky me. :rolleyes:

Amy

[amosmcd]

in reply to: RAI and cancer risk #1175315

Thank you, AZGravesGuy.

[amosmcd]

in reply to: Saw Endo this morning–off Methimazole! #1175220

Hi, Catstuart–

When I started on the Methimazole the first week of September, I was hyperthyroid, by labs and symptoms. From the very first day I started it, I felt in a complete fog and sedated. The fogginess got better over time, but not the sedation effect. Now that Im off it I feel a little better, but now I’m hypo. One of the listed side effects of Methimazole is drowsiness. I am very sensitive to anything that can cause drowsiness, like antihistamines. My endo said my body just doesn’t like Methimazole, even though it worked very quickly. And I was on a low dose.

He said that PTU would have the same effect. But since Im hypo, it’s a moot point.

Amy

[amosmcd]

in reply to: Happy Thanksgiving #1175282

Thanks, Happy Thanksgiving everyone!

[amosmcd]

in reply to: Saw Endo this morning–off Methimazole! #1175218

@Caro– I can see how you got confused. I was so excited when I left the endo’s, I don’t think I worded things well!

@Catstuart–I simply can’t go back on Methimazole, due to the sedation side effect I had. It was intolerable. I would rather just get rid of my thyroid. I had no side effects at all from the Levothyroxine for the year or so I was on it before being diagnosed with Graves. I appreciate your input, though!

[amosmcd]

in reply to: What are your experiences with Methimazole? #1175267

Hi, Stacy–

I’d been on Methimazole for 2-1/2 months. Had immediate problems with it. Felt sedated and fatigued all the time. Slept and napped way too much. a month ago the endo cut the dose from 10mg/day to 5mg/day, based on my improving labs. I cut the pills in half and took half in am and half at bedtime to try and lessen the side effect, but it didnt help. Finally went in 2 weeks early to see my endo and labs drawn. I was now hypo, and I told him I could not stand being on it. So Im off it, we’ll wait 3 weeks and see if I go hyper again, which he expects, and then I’ll have to decide on surgery or RAI.

I haven’t heard of anyone else on the forum having that side effect, but if something says it may cause drowsiness, it usually does with me.

Just something to watch for. For me, it was impacting my quality of life. It did work very well in getting rid of all the hyper symptoms I was having. I hope it works as well for you as it has for most of the folks here.

Amy

[amosmcd]

in reply to: Starting methamizole today, 10 mg low dose. worried. #1175257

Hi, Stacy–

I was started on 10mg as well and retested after 6 weeks. It really knocked by thyroid levels down in that short time to almost normal. I just seem to respond quickly to thyroid meds, either Levothyroxine or Methimazole. After my dose was cut in half and I was feeling bad, I had my labs retested early and found Im now hypo.

My doc did a liver function test at my request at the 6 week mark. Never had any issues with my liver.

Hope this helps.

Amy

[Author]

Posts