[adenure]

#1059012

I’ve been on 5 mg. of methimazole daily for 6 weeks. I started to feel better after 2 weeks and pretty good on the 3rd week. Since the 4th week though, I’m noticing that some of my symptoms are coming back in a way. The one consistent that has improved a lot is my heart rate. It was around 100 when I was resting and could get to 114-120 when I was just walking around. Now, it is pretty much back to my normal resting heart rate, which is around 62 bpm. For that I am grateful!

The symptoms that don’t seem to be improving a lot are the insomnia (although not as bad as before admittedly), the floaty “light headed” type of feeling, the feeling that breathing is labored- although that comes and goes and isn’t terrible, and just feeling weak and down (although feeling down is probably because I just want to be me- 100%- again. I pulled a muscle in my back folding laundry yesterday and couldn’t get out of bed the rest of the evening last night until 10:30 this morning! Geez! I used to be in very good shape before all of this. I had a good, solid week where I started to think, “Hey! My symptoms are really improving!” The light headed, weird floaty feeling was completely gone for 4 days- it was wonderful! But, now it’s back on and off and I don’t understand why. I thought the ATD’s were supposed to improve one’s symptoms as time progressed. Is it possible to go up and down? I get my labs done in 2 weeks to see how the 1st 2 months on methimazole is going (I haven’t had my blood done yet, as my doctor said I had to wait 8 weeks before doing it).

I miss being able to jump out of bed, take care of my boys the way I’m used to- teaching them with a lot of energy, multi-tasking, going to the zoo, Sea World, museums, the park and playing tag etc etc… I wonder if my dose needs to be increased? I guess I’ll have to see come May.

So, my question is: Is it normal for symptoms to be sort of like a roller coaster on the ATD’s? Do they come and go? Get better and get worse?

Second question is: Is it possible to go really hyper or go through a thyroid storm when you’re on ATD’s (even a small dose?) As a side note, my symptoms aren’t anywhere near a point to worry (comparing them to how I felt before starting the methimazole anyway), but I was just curious. Thanks!

Alexis

[Harpy]

#1171555

If you search “roller coaster” here or any other GD forum, you will get numerous hits, yes it does fluctuate early in the treatment. The degree of time and exact pattern vary between individuals.
My partner found it took nearly 12 months for symptoms to fully subside, but then hormone levels continued to fluctuate for a further 12 months until they stabilised and began a predictable process.

As regarding thyroid storm while on ATD’s, I have not heard of it happening, but I can’t say conclusively that it couldn’t happen.

My partner recorded her resting heart rate morning and night, as an indicator if her levels should start to increase, she also kept a daily symptoms, “how I felt today” diary, so she could track progress and see overall changes.
For most people there is a “two steps forward, one step back” pattern to their progress.

[Bobbi]

#1171556

Our antibody levels can change for no well-understood reason. While we are on antithyroid meds those antibody level changes can alter the amount of the drug that is required to keep our thyroid levels normal. So, we can go hypo while on those drugs and we can return to hyper while on those drugs. If you are concerned about persistant symptoms you probably should consult with your doctor.

Thyroid storm is associated with untreated or inadequately treated hyperthyroidism. So I suppose it would be possible to experience it if the amount of ATD being taken was not big enough — or if the patient was forgetting doses frequently, or something like that. Having it occur post diagnosis, while on ATDs isn’t something I remember seeing on the board, though.

[adenure]

#1171557

Thank you!

Alexis

[snelsen]

#1171558

Hi Alexis,
Nice to hear from you. I’ve been wondering how things are going for you. Glad that there is some improvement in your hyper symptoms, and super glad that your heart rate is back to baseline.

I know your doc said to wait a full 8 weeks, but you are having an increase in symptoms. I suggest that you call the endo, (if you can contact him electronically, all the better, for you will be able to be more specific,) but leave the message that you feel some of your hyper symptoms are returning.
It seems like it is really bothering you, and certainly worth a try. The result will be, I hope, that you get your labs drawn earlier. It is very possible that your dose might need a little nudge up. And the endo can answer that with labs and your symptoms.

This is the same drug I had when I was hyper. My own experience was that the endo told me that it was very important for me to call with any significant changes I noticed, especially after being on the drug 2-3 weeks, after the existing circulating thyroid hormone had been metabolized. He said to call anytime I noticed significant changes, either hypo or hyper, even if it had been only two weeks, so labs could be drawn. He started me on a very small dose, but then increased it, for, like you, my heart rate and tremors improved, but insomnia, not feeling “right” at all, heat intolerance, and other symptoms that I don’t recall anymore, remained. So I did call, he wanted labs drawn, and increased the dose of the med. It definitely is a balancing act, getting us “down” from being hyper, but not letting us got TOO “down” so we get hyPO.

I am not sure how much you are worried about thyroid storm, or simply asked the question. as Bobbi said, it is pretty much limited to untreated severe hyperthyroidism. I am pretty sure if you asked your endo about that, he/she’d simply say it is not an issue in your situation.
Thyroid storm is a medical emergency. I’m enclosing a link from NIH so you can read about it. Here it is.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001437/

Alexis, I really understand so much how discouraging and frustrating it is not to have the initiative, energy, enthusiasm and interest to move on with your busy daily life with your children. It is very, very hard. BUT you can have a lot of hope now, for you are diagnosed, and beginning your treatment, and you WILL become yourself again, back to health. It is a bit of a slug, though, and I tend to want it to happen RIGHT NOW!
Do write again.
Shirley

[adenure]

#1171559

Hi Shirley!

Thank you for your response and thoughts; I appreciate them all! The symptoms aren’t too bad. I think it was more like I had 4 solidly good days and then some of the symptoms came back a little and it was discouraging. I can function and am able to teach my boys and play some, but it does require more of an effort and an “act of the will” than it used to. I did have fun building some goofy looking Legos guys with the boys today and having a good laugh.

Patience. Yes, patience. I think of when we’d go EVERYWHERE- zoo, museums, park, puppet show. I’d walk the zoo for 4 hours, 7 months pregnant, pushing my other 3 boys in the stroller, up hill like it was nothing or close to nothing . Long gone are those days I tell you. Although, I sure hope I’ll be able to walk the zoo again and be that active again. It could be so much worse, and I am very blessed and grateful that I was diagnosed fairly quickly (due to my crazy persistence and constant research- hee hee! & a good primary doctor too), and I’m grateful for (what seems so far) a very good endo. who is good at getting back to me via email within a day of my communicating with him. So, things seem to be good. I suppose I’ll always feel as if I’m “not quite right” until I feel like my normal, strong 100% self. I have to learn to accept this (hopefully temporary) new “normal”. I had asked about being tested earlier (when I first got the meds.) and he said I really needed to wait 8 weeks to show what was happening with my levels. So, I figured okay.

I was just curious about thyroid storm; I do not think I am at a risk for that- I feel like, although not where I want to be, that I am getting on the right track, although slowly. Yes, I too want to be me again right now. I have moments of feeling down and without hope, but they’re usually moments after a tough day. I cry some, talk with my husband, and then watch an episode of Cake Boss- That helps- distraction with a fun show or a good book. Well, time to finish the evening with the family. Have a great night & thank you for writing!

Alexis

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