[Missionfield]

#1059121

Hello! I think this is going to be a bit long, but I am so glad I have somewhere to get feedback! Thanks for reading in advance!!

I was diagnosed with Graves Disease in January 2012. I have been balancing my dose until about 2 months ago when my levels started to be in normal range- on 7.5mg (Tapazole/Methimazole) daily. I haven’t been feeling great the whole time, but Mother’s Day of this year I began to become super sick! Dizzy, nauseous, extremely fatigued (wanting to crawl up the stairs), couldn’t wake up in the mornings, malaise, weird feelings in my arms and legs, heaviness in arms and legs, dermatitis on hand, headaches, out of breath,etc. I went to see my endo. the Friday before Mother’s day and let her know I was feeling horrid. Her response was that all of my tests were good and there was nothing she could do and to see my family Dr.

I ended up getting more sick over the weekend and the following Monday ended in going to another endo. who had the exact same response! I was so annoyed. The very next day I woke up very sick & went to the ER because the sickness was SO extreme. They didn’t find anything wrong in various testings, and said my numbers were in normal range and sent me home. I ended up coming home and that night began having a severe migraine. It lasted 7 days and regular Advil was not helping. I made an appointment with my family Dr., but had to wait to see him. I woke up again another morning and felt even worst!! I was really scared and was having all of the symptoms X10! What did I have another auto immune disease?? I decided to be safe and head back to the ER. They again found nothing. Gave me pain medicine, said my numbers were all in normal range, and sent me on my way. I was so confused. So- I waited to see my family Dr.

It was finally the day for my family Dr. appointment. I was really emotional and tired of feeling ill. After seeing me the dr. said he was pretty sure it was the Methimazole!! In fact he printed out a very thorough side effect/precautions list that was much more detailed then I had seen before. (ex. Central Nervous System disturbance, Lupus-like syndrome) -And all of my symptoms were included. I was happy to maybe have an answer, but knew it meant change in treatment.

For the last few days I have went down to 5mg daily. This has helped curb some of the sickness. I still am super tired and have a hard time waking up, but the headaches and heaviness are better. I am expecting a call from my Endo. today sometime. I think she is going to want to try and say it isn’t the medicine, but will probably offer other options (PTU or RAI).

I have read a lot of other post from similar Graves sufferers making this decision. I am leaning towards RAI. Any thoughts would be helpful! I also hope if anyone else has similar symptoms this will encourage them to research side effects of Tapazole/Methimazole!

Thanks for reading.
May we all find hope, strength, peace, and answers!

[Kimberly]

#1172357

Hello – Wow, I’m sorry to hear you have had to go through this.

Hopefully, you will get some other responses, but you can use the “Search Posts” feature (in the top right-hand corner of the screen) and search for keywords such as “RAI”, “Radioiodine”, “Surgery”, “Thyroidectomy”, etc. to read personal stories from other posters. (Note: you must be logged in with your user ID and password to use the “Search Posts” feature).

As for switching to the other medication, the guidelines from the American Thyroid Association and American Association of Clinical Endocrinologists note that for “mild” side effects, switching is OK, but it is not recommended for severe side effects, due to the concern that the same issue will recur on the other med.

However, I am not familiar with this particular side effect, and I don’t know if it’s unique to Tapazole vs. PTU — this would be a good question to ask your doctor.

Please keep us posted!

[adenure]

#1172358

Hi!

I’m sorry you went through that; you just never know what meds. are going to deal out- huh?? I took methimazole as well (for 7 weeks, 5 mg daily). It got my thyroid under control, but I had side effects too. I didn’t experience what you went through (I actually didn’t feel too badly except for my hair falling out and thinning), but darn medicine was damaging my liver!!! (liver function test showed elevated enzymes), so I had to stop taking it. I’ve been off it for over a month now, and am (fortunately) still holding well as far as my thyroid levels are concerned. But, I am going to get a thyroidectomy next Friday, the 15th. Everyone is different, so I wouldn’t say one form of treatment is right for everyone. I wasn’t comfortable with RAI (even though my doctor thought it was a better choice in general- less invasive, less risk of complications etc). He supports my choice for surgery though, so that is good. I am nervous about the surgery and the journey on the other side of surgery as far as the Synthroid and how I’ll feel. But, I know for certain I NEVER want to be hyper again. That was some scary stuff. I have 4 boys, the youngest being 6 mo. and the oldest 8 years old & we homeschool, so I need to be as healthy as I can be. Of course, we ALL need to be as healthy as we can be! I just know that being a physical, mental, and emotional mess isn’t good for me or my family. I’m hoping the surgery & Synthroid will all go fairly smoothly and I won’t have the fear of being hyper again hanging over my head. Know that whatever choice you make, will be right for you. And that is what matters.

Alexis

[catstuart7]

#1172359

Hi Missionfield, I couldn’t help but wonder if some of those symptoms were hypothyroid. The “normal range” is just a statistical average and there are people who have hypo sometimes, even severe ones, while on the lower half of the normal range. Do you have your lab results and their ranges? Are your free t3 and free t4 being tested in all these emergency trips? The TSH value is inaccurate for a while after a dosage change of ATD’s – that comes straight from my endo.

OTOH I have had bad side effects develop over time taking a drug that I initially tolerated so it certainly could be the methimazole. It does happen, but my money would still be on hypo. I hope you find an answer and feel better soon!

[Missionfield]

#1172360

Thanks for all of the feedback and encouragement everyone!!
catstuart7 wanted me to post my labs from one of my ER visits. This is from my one of my visits:

TSH 1.77 (range: 0.49-4.67)

Free T4 0.94 (range 0.89-1.76)

Free T3 3.5 (range 2.3-4.2)

I spoke with my Dr. yesterday and was surprised that she didn’t even offer PTU as an option. I am glad b/c I don’t think I wanted to go that route anyway, but instead she offered RAI or Surgery. I don’t think I had even thought of surgery before I read the posts on here, and even then had not thought I would ever think of it as an option. Now I am though.

To be honest I am having a really hard time with my current Endo. She did not do T3/T4 on my last visit (before I became super sick). I asked her why and she said, “Your TSH is good.” ugh!! Even the second Endo. I saw would not look at T4 more. She responded with, “It is in range.” Even though I told both doctors I had heard it is important. I live in Columbus, OH and have tried to see a few of the more recommended doctors, but the ones I have tried that are listed aren’t taking new patients, or they don’t take my insurance.

Since some of the severe symptoms have left for now- maybe I SHOULD get another opinion first before deciding?? Or do you think I may get a similar answer? This is complicated.

Thanks for reading and responding!

And again any input is welcome—

[Missionfield]

#1172361

PS- Kimberly, I just saw the post on finding a doctor. Thank you! I have checked two of the sites, but definitely will check the others. That is really helpful!

[adenure]

#1172362

If you can get more opinions, that is a good thing! I know many people can be okay with ATD’s for a long time. But, I have read that even those people who do well on them, a lot of times opt to get surgery or RAI to get off (what can be) a rollercoaster ride of ups and downs with thyroid levels. I read on another forum a lady who had been in remission for 20 years!!! Yet, at 50 years old she is getting surgery done because she had a relapse! I’ve read about relapses becoming worse each time after remissions- I don’t know if that is an “across the board” type of thing, but it wasn’t something I wanted to risk, even if I could tolerate PTU. I know that the potential side effects of thyroid supplement are not as risky as ATD’s, but I know that too will take time to balance out, find the right dose and so forth. But, I’m willing to do that because the memories of being hyper… well, I just don’t want to go there again. The idea of a hyper relapse is scary. And, my endo. told me that my hyper stage was actually mild (as it was my 1st time with Graves and we caught it within a few months of it starting). I believe that when I read other people’s stories, but the idea of a worse hyper stage….. no thanks. Keep researching & getting opinions & praying— eventually the right answer will come to you.

Alexis

[LaurelM]

#1172363

Hi,

I thought I would toss in my 2 cents regarding my current relapse. When I noticed my symptoms I got in right away for a level check. I had also been having regular checks just in case. I think I caught it pretty early and I don’t feel nearly as sick as last time even though my endo said my levels were 4-5 times higher than the range. I’ve only been on meds about a week and I’m starting feel a difference. I think those of us who experienced remission if we are paying attention and get regular checks can catch it before we have been sick too long and then hopefully will feel well again that much sooner. Just my own opinion – I have no other evidence to back it up.

Laurel

[snelsen]

#1172364

A brief comment. i don’t believe thyroid supplement has any side effects at all. It really is essential for us to be alive. Can’t live without our thyroid hormone. Having said that, when humans are getting to that “sweet spot” and right dose, it can be frustrating for the time it can take.

If we were in the normal people group, our loopback endocrine system does that very nicely, when the pituitary and thyroid have little conversations with each other if our needs to change over them. They just take care of it.
Just like our pancreas does a great job or regulating our blood sugars. But, as you know that goes wonky, too, probably even more than the thyroid home, it can be influenced by outside factors, which we can read about.

Shirley

[catstuart7]

#1172365

I have read multiple times of people who say they feel really really sick unless both their FT4 and FT3 are in the upper part of the range. Also that the sweet spot in the range is individual and can be very narrow for each person. So if I were you I’d definitely get a second opinion with an endo who doesn’t dose by TSH. I was very lucky to find one.

I’m on PTU after reacting to methimazole and so far so good, it’s doing the job for me and I feel better than I have in months. My own goal is remission. Even though I know that it’s unlikely to be permanent now is just a really bad time in my life to have surgery and that is what I’d choose instead of RAI. My feeling is there is always time to whack my thyroid later if I have to and I’d like my life to go back to some semblance of normalcy right away (if possible). After all the reading, my feeling is that with Graves “anything goes” there is no choice we can make that guarantees success or failure (other than no treatment at all) so we just do the best we can.

Good luck,

Cat

[Missionfield]

#1172367

Thanks again everyone!!

And Cat- I am with you on the numbers. I feel so much better on 5mg then 7.5mg. Weird! I looked at my FT4 when I was on 5mg the last time, and it was higher then when on 7.5mg, and I felt more sane then too. I think I am going to have to decide weather or not to keep trying meds or not. For now I am happy the headaches and the other extreme symptoms have subsided. I don’t think I realized what a roller coaster ride this was going to be. I am glad you have found some balance though!!

Alexis- I will keep praying, and researching for sure! I think there is something to be said to not have to keep balancing these crazy numbers! I have to make a decision by Monday, and I am still not sure. I think there are pros and cons to all of the treatment options. I wish it were simpler. I will keep you posted with my decision. Thanks for your input.

Thanks! Stay strong everyone–

[Missionfield]

#1172368

Hi! I wanted to make sure and update my final decision on treatment. I have decided to stay on meds. for now!

I am currently taking 5mg. of Tapazole daily. And after lowering the dose have felt better. I called my Dr.’s office- and didn’t get to talk to her, but let them know my decision. The nurse called back and said that was fine and that the Dr. wanted me to get blood work done in 4-6wks. I wish it was sooner, so I could track the progress. I would like to eventually go down to 2.5mg. and if I could see numbers sooner (FT4 especially) I would know if that would make a difference.

I feel better that I made the decision. Now I hope I can try to make some of these side effects subside. I recently have started taking Acetyl L-Carnitine 500mg. daily. Does anyone else know about this supplement? Has anyone had good results from taking it? I read about it on the Elaine Moore site, and it seemed like something to try. I am also interested in Alpha Lipoic Acid. If Anyone has any info. on this or any other supplements I would be interested in learning more!

May we all have strength this week!! Thanks again everyone

[snelsen]

#1172366

Well, I do not take supplements, except for Vitamin D, cause I live in a state “where the sun don’t shine” for around nine months a year.

I was a bit concerned that that almost all of the sites that popped up for alpha lipoic acid, were selling it.
Like all herbal supplements, there is no control over the quality, and even sometimes the consistency of the dose that is stated on the package.
From what I could read, it looks like it won’t hurt you seriously.
Here’s one informative site:
http://www.drugs.com/mtm/alpha-lipoic.html

Regarding carnitine, here is a good reference. Generally, there are only specific situations when a person is deficient in carnitine. THere are some studies listed at this website. Some are very small, some measure PERCEIVED improvements from taking it. And there is nothing really wrong with that. It looks like it won’t hurt you, except for buying it.
Anyway, here is a very interesting article from NIH about it.
http://ods.od.nih.gov/factsheets/Carnitine-HealthProfessional/

I am so glad you are feeling better, and reacting well to the methimazole. Best wishes to you for continuing to move toward feeling great!

Shirley

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