[QZZznne August 11, 2012 at 3:15 pm Post count: 33]

#1059276

I have been on Methimazole since October. Recently I have had extreme joint pain and fatigue along with some other digestive issues. I also got a very strange sore throat for 24 hours. Not the regular sore throat but one felt like the back and top of my throat was “skinned raw”. I called and asked if this was a possible side effect and was told by the nurse that it wasn’t, I should call my regular doctor. I never called but did stop taking it for a week. Got nervous and then yesterday took my regular dose at noon. By 4 o’clock my entire body ached, I was chilled to the bone (it is hazy hot and humid here in NY so that was wierd) and I was covered with three blankets…… freezing. I couldn’t move my body ached so badly so I spent the next 12 hours in bed. Got up the next morning and felt fine again. What do you fellow thyroid friends think? Could it be possible that after all this time my body is having a reaction. I am going to call again on Monday but just wanted some input.
Thanks…..Suzzanne

[snelsen August 11, 2012 at 4:49 pm Post count: 1909]

#1173805

Hi. I have no idea. But the nurse may not know. (I am an RN.) Seems to me a set of labs is indicated, especially a CBC (cell blood count) to know your white blood count (WBC.) That would give information that can help rule out a very rare reaction, and a serious one, to methimazole. Agranulocytosis can happen, but I have no idea if it is a a possibility after you have been on the ATD for as long as you have been taking it.

As you already realize, that is a pretty big knee jerk reaction to stop taking your methimazole cold turkey. I certainly do not recommend that. But I understand your frustration, as well. And as you have learned from how you feel regarding hyper symptoms, one can hypothesize that you are still hyper without the anti thyroid drug.
*Do you have a fever? ARe you continuing to feel fine?
I think if you get really sick this weekend, and I mean REALLY sick, fever, etc., so that you are worried about yourself, you can consider going to an ER, but otherwise, I would call the docs office first thing Monday morning. How long has it been since you have had labs? Do you have a copy of them?

And, of course, it is possible, that it is unrelated to Graves’, or that you had something whacky that is over now.
Another consideration, depending on how your doc’s office works, is that you can call the on-call, describe your problems AND your meds, (be SURE to take your temp) maybe even mention agranulocytosis as a rare side effect, ask if you can get some labs drawn this weekend.

Of course, I am just thinking as I am typing, and definitely not a doc, as you know. But some things to think about.
Shirley

[QZZznne August 12, 2012 at 6:08 am Post count: 33]

#1173806

Shirley,

You are absolutely right. It was a pretty big knee jerk reaction to stop taking my methimazole. I just had this gut feeling. I felt awful for awhile and did mention my aches to my doctor (PA – I got assigned from the first time I called for an appointment) but she wasn’t concerned. I live on Advil. After my test week of not taking it, even though I felt so much better, I panicked and took my reg. dose and boom, four hours later I spent aching, freezing, and feeling fluish. I slept it off and by the following morning I was fine again. Now yes, could be a coincidence but this is how I felt, just much less intense, right before I stopped the first time. Perhaps it isn’t as serious as Agranulocytosis. Was thinking maybe it is just some sort of reaction but I am going to call tomorrow. I am secretly hoping she is on vacation so I can have the opportunity to see another person. It is a huge Endocrine Group.

As for my levels, have no clue. I hear it verbally from her when she moves the laptop screen over for a quick glance but I never get a take home copy. I really stink at the numbers thing and I need to get a grip on that. How pathetic huh?

Thank you for you care and concern. I am alive and well but will be calling tomorrow.

Suzzanne)

[snelsen August 12, 2012 at 7:43 am Post count: 1909]

#1173807

Hi Suzzane, so nice to hear from you.
I do have a lot of respect for gut feelings. And you might be absolutely right about all this that you feel, related to your ATD.

Graves’ is a tough thing to have, in every aspect of our lives. BUt we are stuck with it, and pretty lucky to have as many choices to have a lot of hope of gaining “ourselves” back to when we had never heard of it. Of course you want to feel well, not have all these aches and temperature changes, not to mention the anxiety and other crap that goes with being hyper. It’s hard.

To further complicate the issue, we bump along in life with a lot of other “parts” of our body, and sometimes we get normal stuff, and attribute it to Graves’ or the meds we take, and other times it is a completely different problem with our health.

Now, having said all that, I sure hope you can find a doctor who is caring, concerned, and REALLY listens. In this world, with all the pressures of health care providers to limit their appointments to 20 minutes, this is hard to do. But they are out there. Especially, with something like Graves’ (which we actually DO have the rest of out lives, have the continuity of the same doc over times, who begins to really knows you, and realizes that when you call or email (can you do that where you live?) that you are an informed patient about yourself. Is this possible, in your health care plan, to find one doc who is YOUR endo?(after you find the right one.)

Of course, our responsibility in all this, is to give accurate information about how we are feeling, and definitely provide the objective knowledge that they cannot possible know (pulse rate, blood pressure, etc. when you feel symptoms of hyPER and hyPO.) For that can help them help you with a change of dose of medication, and sometimes is very important to know. In other words, docs can help us more when we are good reporters (:
So, having said all that I have a couple suggestions for you for the future, with any doc and office, anywhere.
1. At every office, ask for a medical release of information permission form (or words to that effect.) Fill it out so that records of all visits (what the doc has written after you have left) all labs and other tests, sent to YOU for your personal medical file. This is helpful for you won’t feel so disempowered, and you will know what they are thinking about-AND what misunderstandings might have been written down by them that you can clarify in the next appointment. It is your right to do this, and no office should question it. But they can’t give you copies of your medical records unless you DO give them permission.

2. Now, the labs. It is a good idea to have them in your file. We don’t really have to study them a lot, and we can make our own decisions by ourselves about our treatment based on them. Still, it is helpful to know. Most lab results have the result, plus the “range,” or the general standard normal range stated right next to it. So when they flip the computer over for you to look at, ask for a copy. they might give it to you on the spot.

Lastly, all of us are complex people, so your (or my) symptoms can be totally unrelated to Graves’. When we are in the beginning of Graves’, especially, we tend to assume that anything that happens to us is related to Graves.
Or, again, it may be your ATD. IT’s all a mystery. I sure hope you have some success with good communication and good treatment.

Shirley

[Carito71 August 12, 2012 at 9:45 am Post count: 333]

#1173808

Hello Suzzanne,

I agree with Shirley about your labs. As for your symptoms, you said that you have been on Methimazole since October. Could it be that you have reached a hypo state? I would really want to look at my labs if I were you. I have been on Methimazole since mid June and a couple of days ago when I received my lab results I noticed that my fT4 is now in the hypo range. I have been feeling tired and I’m thinking it is because of that. If the nurse told you to call your regular Dr., you should do so. Maybe your regular Dr can get to the bottom of things even if it is Methimazole/GD related. Once again, keeping up with labs and understanding where we are as far as our #s is very important b/c you can compare your #s with the normal range and with your symptoms. An informed patient is a plus with a disease that is with us for the rest of our lives. Please keep us posted. Hope you find an answer soon.

Smiles,
Caro

P.S. Welcome to the forum.

[QZZznne August 12, 2012 at 4:12 pm Post count: 33]

#1173809

I have to say that I have learned more from this forum than in my doctors office. You are both examples of why I lurk around here so much….. knowledge and compassion. When you get Graves, you don’t realize that it is everlasting and will always have ups and downs. Not even the closest people in my life can relate to what it’s like on the inside.

I am going to turn to my family doctor to sort this out. I am making notes on your important steps Shirley and taking them along with me. My family doctor will be of great help because I love her and she listens. I am going ask her to help me find a better Endo too while asking her about lyme and food allergies. I have been gluten free mostly, I’d say 80 percent because of my family doctor’s recommendations. I found it odd but gave it a whirl and I did feel a difference in my overall health. Good enough that I stuck with it. Lately though, I have been a victim of a few summertime beers and some other indulgences so perhaps it is that also that is the culprit. The Lyme because I am outdoors and live in a “high lyme crime area”. It is so common here. Hence the poison ivy I am sporting right now and a miracle fix for that is apple cider vinegar. Takes the itch away instantly which is so awful you don’t care about how you smell!
OR I could be Hypo Caro, never thought about that and it would make sense with the way I felt. Boy that is not good either and it sure does flip flop fast.

Anyway, I will chime back in when I get some facts. In the meantime, thank you for your posts. You understand:)

Suzanne

[snelsen August 12, 2012 at 4:28 pm Post count: 1909]

#1173810

Suzanne, just a quick thought. Beer is ALSO made from rice or corn. I looked up a pretty good government reference, maybe you could try one of those! (:
A cold beer on a hot summer day, really tastes good. It is the only time I like it. Otherwise, I prefer red wine (for my heart, ya know! (:

I am assuming you are taking the typical Lyme steps for prevention (not supplements….) You will know a lot more about that than I do, but I did read the CDC recommendations for Lyme disease prevention after I read your post, and it probably says all you already know, but here it is.
http://www.cdc.gov/Features/LymeDisease/

I am SO GLAD you have a family doc you like, and who listens. Tell her you want an endo just like her!
Re the paperwork stuff,you need to do that with each doctor office, hospital, etc etc.

Off to dinner and have one cold beer (it is HOT for Seattle, almost 90, very unusual.)
I love this forum, too, for all the reasons you have mentioned.
Shirley

[Darcy43 August 13, 2012 at 8:35 am Post count: 125]

#1173811

Yes, get your labs checked and ask your doctor asap. One of the main caveats of Methimazole warning is “if you suffer from a sore throat seek medical attention.” This is because that *may* be a sign of infection due to the lowering of your WBC because of the mediation. I cannot believe your doctor flat out told you “no” that couldn’t be a cause for concern. Wow. Yes you have been on the meds for a while, but I didn’t start having side affects until 8 months in also.

Hopefully it is nothing serious, but do not ignore it. Get to the doctor and find out. You will be treating GD for a long time so you need to get use to paying attention to your body…

Good luck and this board is great.

[QZZznne August 13, 2012 at 11:47 am Post count: 33]

#1173812

I just found my labs from July 10th attached to the back of my invoice. How interesting they are although I don’t understand everything clearly, it seems that I am not that off in my levels if you look at whats normal and if I am looking at the right things.

Darcy – What reaction did you have?

[Darcy43 August 13, 2012 at 11:52 am Post count: 125]

#1173813

My reactions were extreme hair loss (though the doc claimed it wasn’t the Methi although hair loss is one of the affects listed), muscle cramps, weight gain, itching to name a few.

Because my dose was finally reduced, those symptoms have disappeared, but now my endo wants to increase my dosage because she is just looking at my TSH level (but my T4 and T3 appears normal). I am at a dilema…

[Darcy43 August 13, 2012 at 12:27 pm Post count: 125]

#1173814

BUT everyone reacts differently to the medicine. Some folks do not suffer any side affects at all. This was just my experience.

Whatever you may experience, just keep track and discuss with your physician to receive proper care.

I am not a doctor, I just suffer from Graves Disease….it sucks…

Happy Monday and good luck with treatment.

[QZZznne August 13, 2012 at 2:23 pm Post count: 33]

#1173815

Looking at my July 7th results –

T3 149.0 Norm is 84.0-172.0
T4 1.420 0.650-1.400
TSH 0.024 0.400-4.000

The BMI must have been a false reading

[QZZznne August 13, 2012 at 2:24 pm Post count: 33]

#1173816

Looking at my July 7th results –

T3 149.0 Norm is 84.0-172.0
T4 1.420 0.650-1.400
TSH 0.024 0.400-4.000

The BMI must have been a false reading

[QZZznne August 13, 2012 at 2:42 pm Post count: 33]

#1173817

Sorry about your side effects It really is a battle isn’t it.

[Darcy43 August 14, 2012 at 8:57 am Post count: 125]

#1173818

Yes indeedy.

Make sure your endo really explains what your labs mean. That will give you a better understanding.

Also, do your own research too (this board is great and can help a lot to guide you to medical sites)

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