[AnnaJ]

#1058924

Hello everyone. I’ve been reading over the forum for the past hour and learning as much as I can. It is such a comfort to find this board and know I will not be alone in this new life journey of Graves Disease.

I’m 41 yrs old and have two daughters. I had no idea there was anything wrong with my thyroid until I had my yearly physical in January. My TSH came back at 0.01 but my T3 and T4 were normal. The year before my TSH came back abnormal so I was asked to do the test in three months to check it again and it came back normal. But because it was abnormal again my family doc sent me to an Endo who sent me for the thyroid uptake scan.

I went in Monday to get my results, which confused me somewhat because they supposedly came back in the normal range but my endo still put me on 20mg a day of Methimazole. My 4 hour uptake was 12.5% (normal range listed as 6-20%) and my 24 hour uptake was 38.6% (normal range listed as 10-40%). My endo looked at the film and said “it didn’t look bad at all” and he didn’t see any nodules. My pulse is always normal but my blood pressure has fluctuated a bit to 130 a time or two.

I never even realized I was having any symptoms until after my diagnosis. I was diagnosed with PVC’s (Premature Ventricular Contractions) back in 1994, so when I have heart palps, I just thought it was my PVC’s acting up. I have muscle and joint pain every day, but I contributed that to the car accident I had back in 1995 that crushed me from the waist down leaving me with permanent injuries and pain medication always eases it. In the last year I have been having some hand shaking at times and thought it was just me trying to deal with the pain I was in. But one symptom I just couldn’t figure out was the extreme fatigue–and I mean feeling so tired it was hard to breathe. Now I’m wondering if the heart palps, the hand shaking and this extreme fatigue are all symptoms of the Graves. I guess I’ll be able to gauge that better once I am on the Methimazole long enough.

But I am scared to take the Methimazole. What kind of side effects has anyone had with it? I’m mostly worried about my liver and white cell count. Thank you all for your thoughts in this forum.

[adenure]

#1170979

Hi Anna
I’m new to this board, but I wanted to say hi! I was diagnosed with Graves almost 2 weeks ago. I’m a mom too (I have 4 boys). My endo diagnosed me based on labs; I didn’t have a scan because I’m breastfeeding my 4 month old. I’ve been taking Methimazole (5 mg. daily) for almost 2 weeks now. I think it is slowly starting to work. My resting heart rate has slowed down- not completely normal- but, definitely better than it was. It could get to 114 or so a few weeks ago, and now it is mostly in the 80’s and sometimes in the 70’s. I still feel weak and shaky at times and “floaty”- kind of an odd floating sensation, and my insomnia is still my worst symptom, BUT I do believe the Methimazole is helping. I was scared like you about the side effects, liver issues and white blood cell count. My endo said in 12 years, he’s only seen it happen once or twice, so that was reassuring. My body is generally pretty sensitive to meds., so I was nervous, believe me. I have to get my blood tested in 6 weeks to see if the dose is right and if it’s working and then every 2 months for the 1st year after that. The hardest thing about all of this is waiting; it seems like such a long process to healing. I just want to be my normal self again– the mom my boys are used to. I hope you feel better soon.
Alexis

[Kimberly]

#1170980

AnnaJ – Hello and welcome! As Alexis mentioned, the worst of the side effects with anti-thyroid drugs (liver and white blood cell issues) are rare, although this *is* something to be aware of when taking the meds.

There is some controversy over whether continuous monitoring can help catch these complications early. However, my own doctor does a Complete Blood Count and Comprehensive Metabolic Panel every time I have labs done. (I’ve been on Methimazole since late 2007).

If you ever experience a severe sore throat with fever, this is a sign of potential WBC issues, so call your doctor’s office ASAP. They will arrange to have your WBC tested, and might advise you to stop taking the meds until the results are available.

Keep in mind that some patients respond really quickly to Anti-Thyroid Drugs (I did), so if you start to experience hypO symptoms prior to your next appointment, definitely call your doctor’s office to get a set of labs done sooner. Every patient is different, common symptoms can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

Also, make sure your doctor is looking at Free T4 and T3 when making dosing decisions. The latest medical guidance notes that TSH can remain suppressed for quite some time and is not a good benchmark for making treatment decisions early in the process.

Take care!

[ChristineMarie]

#1170981

Hi AnnJ –

I am also new to this board. Hello everyone. I am a wife and mother of a 13 year old boy.

I too was recently diagnosed with Graves Disease. 100% confirmation came last Friday night, March 23rd. The last of a slew of blood tests, my antibody test result, had finally come back. My endo doc messaged me close to 11:00 p.m. notifying me that the antibody test came back positive and that she was going to send in the Tapazole/Methimazole prescription and to start it immediately.

I began the Methimazole on Saturday, March 24th and boy was I really scared. I had the same exact fears as you. I took it at 2:08 p.m. and less than 15 minutes afterward I felt like I was going to pass out. My left arm felt heavy as if I wouldn’t be able to move it. I managed to get up and tell my family to call 911, but my husband said to give it a few more minutes.
I ended up not fainting, the heavy feeling passed and, so far, I have been okay. I also had slight itching and a little pinkening of my cheeks. I ran these by my doctor and I was told to monitor them in case they worsen. Otherwise, my body seems to have adjusted since the first dose.

My doctor said people’s bodies will take a little time to adjust – about a week or two. My nurse said if it becomes hard to breathe or if my heart races or if I happen to faint and my pain above a 7, on a scale of 1-10, then I would need to go to the ER. Thankfully, that hasn’t happened.

If it makes you feel better, maybe you could go to your doctor’s office, let them know what you’re doing and take the first dose in the waiting area. That’s what I did for my other medication, the Propranolol. My Advice Nurse then checked my vitals an hour afterward. I was so thankful and relieved too.

I am also thankful that you and everyone are all on the forum. Since the ordeal began, I’ve felt so many emotions including being scared, feeling sorry for myself and so alone. I feel a little braver and less alone now.

Take care,
Christine

[Kimberly]

#1170982

Christine – I’m sorry to hear about your diagnosis, but am glad that you found us. This forum is a wonderful resource for information and support.

Please keep us posted on your progress!

[trudy]

#1170983

Hi, Anna et al,

I also was worried about taking Methimazole, since the endocrinologist scared me out of my wits warning me about it.

However, I am no longer seeing her for various reasons, and while I’m waiting for the appointment with the new endocrinologist, I talked on the phone with the endocrinologist from where I used to live (he was treating me for something completely different), and he said he has never seen the wbc problem with Methimazole in any of his patients. He’s probably in his 70s, so that’s a lot of patients.

I did not notice any bad effects from taking it. In fact, shortness of breath was one of my most troubling symptoms and about two hours after I’d taken it that started to ease up. That’s a lot sooner than my internist said I could expect to see any results.

I was started on 20 mg a day in the form of 10 mg twice a day. After four weeks I was moved down to 10 mg a day, 5 mg twice a day.

I was told that the symptoms would be gone in four weeks. I think that’s a bit optimistic. Things are very improved, but at the five week mark I am still having some tremoring, anxiety, etc. My heart is behaving well, but I’m still on Rythmol, the anti-arrhythmic, they put me on because I was going in and out of afib. I have to say that, cross fingers, the anti-arrhythmic is wonderful – I hardly ever feel PVCs and PACs, which used to drive me crazy for years.

[Kimberly]

#1170984

Hi Trudy – I’ve been on Methimazole since 2007, and I really started feeling more like myself at about the 8-10 week mark. Every patient is different, though.

Keep in mind that all three treatment options have risks and benefits. In a perfect world, doctors would fully discuss the risks and benefits of all three treatment options in an unbiased manner. However, doctors sometimes bring their own experiences and biases in to the picture when discussing treatment options.

A doctor who has had one or more patients experience severe side effects from Anti-Thyroid Drugs might tend to steer patients away from this option. Likewise with the other treatment options. But they all have pros and cons that the patient needs to be fully aware of.

Here’s an interesting article from an endocrinologist that talks about the three options:

[size 10](Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).[/size]

http://www.endocrinetoday.com/comments.aspx?rid=90930

Take care — and keep us posted on how you are doing!

[trudy]

#1170985

Thanks, Kimberly.

I have thought a lot about this and plan to try long term Methimazole unless the new endocrinologist convinces me otherwise. I am concerned about the effect of RAI on the potential eye problem and also averse to clobbering an innocent body part like the poor thyroid when the problem is the immune system. Plus once one has RAI, there is no going back. Or if RAI actually cured Graves, that would be different. The surgery additionally seems risky to me because of the no calcium regulation possibility. I am aware of the potential very serious side effects of the med. No really good answer.

[trudy]

#1170986

By the way, I think I saw a mention that there was some possibility that monitoring the wbc etc might give early warning of developing that problem. I’d been told that that wasn’t the case. Is there a paper somewhere about that? Thanks.

[mimi]

#1170987

I am newly diagnoised with Graves, but believe that I have had symptoms on and off for years. Taking 10mg of methimazole 2x’s a day plus just started Paxil for deppression. I first thought I felt better on the meth as I jokingly call it. But I am gaining weight and feeling soooo tired and lazy. Face and eyes look puffy and hands and forearms feel thick and heavy. Should I be calling my doctor about these affects?

[Kimberly]

#1170988

@Trudy – Here is the section on monitoring of WBC from the latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists: “There is no consensus concerning the utility of periodic monitoring of white blood cell counts and liver function tests in predicting early onset of adverse reaction to the medication (100). While routine monitoring of white blood cell counts may detect early agranulocytosis, this practice is not likely to identify cases, as the frequency is quite low (0.2%–0.5%) and the condition sudden in onset. Because patients are typically symptomatic, measuring white blood cell counts during febrile [feverish] illnesses and at the onset of pharyngitis has been the standard approach to monitoring.”

Interestingly, the reference they cite is actually in favor of monitoring, but it is more than 20 years old:

[size 10](Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).[/size]

http://www.ncbi.nlm.nih.gov/pubmed/2310281

With that said, my doctor does this monitoring anyway to err on the side of caution.

[Kimberly]

#1170989

@mimi – Hello and welcome! Yes, I would definitely call your doctor’s office and mention these symptoms…they might need to do a set of labs to check your levels and see if your methimazole needs to be adjusted. Some patients respond very quickly to Anti-Thyroid Drugs (I did) and can start to experience symptoms of hypo.

However, I do know that some anti-depressants can also be associated with weight gain, so it can sometimes be difficult to untangle what effects are coming from which meds.

Either way, it would be a good idea to see if you can get a set of labs done to see where your thyroid hormone levels are.

Take care!

[ChristineMarie]

#1170990

Thanks, Kimberly! I will definitely keep everyone posted. I hadn’t had a chance to log back in until today. So far so good. Went to see the opthalmologist today and was told that Graves has only slightly affected my eyes. So, I guess that was good news. The sort of bad news is that the doctor wants to do further testing in connection with my optic nerve and possible future Glaucoma! *gah* With the Graves, she said she will check my eyes yearly to monitor any changes in measurements of my eyes. Take care everyone.

[ChristineMarie]

#1170991

Thanks, Kimberly! I will definitely keep everyone posted. I hadn’t had a chance to log back in until today. So far so good. Went to see the opthalmologist today and was told that Graves has only slightly affected my eyes. So, I guess that was good news. The sort of bad news is that the doctor wants to do further testing in connection with my optic nerve and possible future Glaucoma! *gah* With the Graves, she said she will check my eyes yearly to monitor any changes in measurements of my eyes. Take care everyone.

[snelsen]

#1170992

I’d be sure to call your endo, get some labs before you see him. Just as Kimberly said.
It is good that your eyes are being checked carefully.
Shirley

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