[WWWI2]

#1060345

I was taken off methamizol last August (2013) at which time my numbers were in the normal range. They have remained normal and I have been very grateful for the last 6 months. However 2 weeks ago, I started noticing symptoms. Tachycardia, insomnia, fatigue, agitation etc. Friday I got my blood drawn. I don’t know the results yet, and should know in a day or so, but either my Graves’ is active again or something else is very wrong with me. Since this is how it felt when Graves was active last year, I’m assuming that’s what it is.

What makes it so hard is that it really messes with emotions. Fear, anxiety, depression are through the roof. My hips hurt and the fatigue is pretty rough. I am so sad and scared. I should not have gotten my hopes up.

I’m really glad this site is here. I know in 2012 when I first was diagnosed and during the time I was on Meth, trying to find doctors that would hear me, you all were here. It made a really difficult time managable.

WWWI2

[snelsen]

#1182054

Hi WWW12,
Yes, it is possible that Graves’ is paying you another visit. I don’t recall the % of people who have true remissions. Depends a lot on how remission is defined, but I think it is close to two years. And then you can never be sure. We will always have Graves’.
I totally understand why you got your hopes up, which makes this even more difficult. So focus on getting better, being your ATD’s again (if the labs support how you feel, I suspect they will) and feel good first. Take it step by step.
I am sorry you feel so darn crappy, but the good news is that you can go back on an ATD, feel much better in a relatively short period of time. When you feel better, your fragile emotions get better, too, as you know.

Then, it is possible, that you join most of the rest of us, deciding which treatment to have. I believe you have probably read about them on this forum and maybe heard about them from your endo. This is not really a bad thing, for you now have experience of living with limbo, knowing that remissions are rare, and developing all the full blown symptoms of being hyper again is pretty terrible and life changing in a not so good way.

yes, you are right on,that it is very difficult to find doctors who are skilled, knowledgable AND compassionate. But they are there.

YOU WILL end up feeling good again, and knowing life as you want to know it. But now is now, and i totally “get it” why this is a big blow.

Shirley

[WWWI2]

#1182055

Shirley,

I’ve been beating myself up for what I might have done that caused graves to come back. I quit smoking after 36 years in December and I’ve been told that there are studies that show how quitting smoking can cause Graves to initiate. Or was it the edamame (soy) I ate or was it the foods containing iodine? Was it starting a certain medication? was it stopping a different medication?

I cry at the drop of a hat. My brain is non functional and I keep making stupid, stupid mistakes. I got yelled at at a grocery store for parking too close to some guys car and I’m always SO aware of my surrounding and yet I had no idea I’d basically locked him in.

I’m agitated and so impatient and I cry and cry and cry…

But reading your response gave me relief. No I don’t have to figure out how i’m going to get my thryoid out, today. And yes, even tho there are other side effects, I believe that when Meth kicks in much of this distress will go away.

Thank you for your calmness and reassurance. I don’t think I can tell you how much that has meant to me.

WWWI

[npatterson]

#1182056

we all spend a lot of time asking “Why?”. You didn’t do anything to cause Graves’. so stop beating yourself up! We have all been there, done that, and some of us travel back there regularly. Focus your efforts on finding a good doctor and making good decisions. We will be here for you.

Take care,

Nancy

[WWWI2]

#1182057

Nancy,

Thank you for your response. I think until I get back on the Meth and things calm down some I’m going to be a crying, worrying, angry pile of muck lol. I appreciate your words and I am going to try my best to stop the self harshness. It’s just so hard right now, each day seems to be getting progressively worse. Just want some relief.

Thanks again

WWWI

[Raspberry]

#1182058

The way I understand it is if your TSI is not very low (very low Graves’ antibody activity) then getting off the medication will inevitably lead to relapse. WWWI2 it may not be that you did anything wrong at all but that you got off the medication too early, your body held the balance for a while but then finally tipped back over again. From what I’ve read people especially in Japan have higher remission rates and I sure wish we could have that here. I’m rushed right now, but if you are curious to dig up the studies they are out there on the net.

All that said though, I’m tired too. I’ve been on methimazole two years and I read about people getting TT’s on this board and think maybe they are the wise ones. I want remission too, but I’m tired of the up and down and fearing stressful life events could plunge me back down into illness. On the other hand I also have some TED symptoms – that risk never goes away thyroid or not. So I guess we decide what risks we want to take and lay our money down. I’m sorry it’s hard for you right now, know that it will get better one way or another.

[WWWI2]

#1182059

Raspberry,

It’s helpful to know that it may simply have been too early. Truth is she didn’t take me off to try for remission but instead because she didn’t agree with the protocol of the last doctor. Neither of us expected that my number would be normal but they were.

I did some research early on about the Japanese studies. It appears they had a higher remission rate because they had a very, very strict protocol over a period of years with lots of oversight. They tried to emulate those studies here, but they didn’t follow them as strictly and therefore were unable to replicate the studies.

I really hear you on the ups and downs and the worrying. Over the last couple days, I’ve tried to come to terms with the idea that TT is in my future and that I’m probably going to end up extra uhm fluffy and terminally tired. One thing I’m having a hard time with is that because I was on a block and replace protocol from my previous doctor, which included levothyroxine, when I was put on that my hair began to fall out. So I have this image of me as a hairless, very tired, extra full figured woman (I’m’ already seriously mushy). I haven’t QUITE accepted that yet, but I’m working on it…

WWWI

[Raspberry]

#1182060

Put that image away! I’ve been very encouraged following the TT reports here on the board. I don’t think one necessarily is doomed to be heavy, tired and miserable and hairless on replacement hormones unless the doc is screwing it up. I think that whether we are on ATD’s or replacement patients need to be much more, um, assertive in making sure they can get the right care than with other kinds of illnesses. Of course it’s hard to be super-brilliant and politely assertive while the Graves’ is whacking away at one’s sanity.

[LaurelM]

#1182061

Hi,
I echo the message to try to stop worrying about why your levels may be off again. I got to have about a 6 year remission which was nice while it lasted but ended not quite 2 years ago. We have no idea why. I lead a fairly healthy lifestyle most of the time. Just bad luck.

After about18 months on PTU that just wasn’t working as well as we would like, I had a TT in August. In spite of still working to find my replacement dose, I feel much better than I have in nearly 2 years. I am starting to get out walking again. I have even dropped a couple of pounds of my PTU weight gain. For me the TT has been a good decision. Each day is getting better.

If it is your levels being off, getting back on the meds will be the first step and then you can decide with you Dr. How you want to tackle the next stage of your treatment.

Keep in touch,
Laurel

[WWWI2]

#1182062

I haven’t heard from the doctor yet, although I called and they do have the results but can’t share them with me without the doctors OK.

All I know is if what I’m feeling is not graves, I’m in a hell of a lot of trouble. I can’t sleep, my anxiety is through the roof and I’m in such distress right now. At this moment I am having an increadibly rough time. Speaking of wacking away at ones sanity…

This is HORRIBLE

[SueAndHerZoo]

#1182063

Sorry you’re having such a rough time, I can TOTALLY relate and understand. I am / was the Queen of Anxiety and it got to the point where leaving the house at all was a major struggle and staying in the house wasn’t much better. My endo had thought that my Graves Disease probably wasn’t serious enough for a surgeon to consider removing my thyroid, but the day he walked into his exam room to find me on the table sobbing, he gave me surgical references. The surgeons absolutely agreed that I was the perfect candidate and my thyroid was removed in July 2013.

Having said that, you don’t necessarily have to become a bald, fat, slug once your thyroid is gone. I’m living proof that it doesn’t have to happen. I am still slightly on the hyper side of things so no, I’m not tired at all but I am able to sleep quite nicely when I choose to. I packed on some pounds when I was pre-and post surgical and am now successfully taking them off at a rate of about a pound a week. And yes, I had some hair loss when I first started Levothyroxine but that has pretty much stopped.

I’m not suggesting you rush into a surgery or an RAI procedure but just know that there are solutions to this and you WILL feel better again. “This too shall pass” and if you ever do opt for surgery, you don’t have to be fat, bald and lazy…. promise.

Sue

[WWWI2]

#1182064

Sue

That was a great post thank you! Your reassurance is greatly appreciated. (and that goes for you laurel and raspberry as well!)

Since I last posted I’ve seen my Endo. She has agreed to start me on 2.5 mg meth every other day. My T3 and T4 are fine so she’s not concerned about Graves at the moment. I asked her why my TSH is so low (.53) and she said some people just are that low. The problem is I am highly symptomatic so she agreed to let me take some meth.

The concerning thing is she said that Meth is not a life time thing and I have about two years in total that I can take it. so I asked her what happens after two years if my tsh is still low and I can’t take meth? She said not to worry about it now and hopefully my tsh will raise on it’s own. I take that to mean that if the time comes, I may have to make some decisions, but for now, I’m just thrilled at the possiblity of relief.

It’s tremendous that you all have not become the slug I feear I will. You give me hope that there can really be other outcomes than what I anticipate.

thank you so much for taking the time to respond

WWWI

[Kimberly]

#1182065

Some docs will insist on stopping anti-thyroid drug therapy after 18-24 months, but the latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists (which is located in the “Treatment Options” thread in the announcements section of the forum) actually does leave the door open for longer-term use if that is the patient’s preference. You might ask your doc for the reason that she feels this way – perhaps she had a bad experience with a prior patient? With PTU, there is a specific issue that increases in risk the longer you are on the meds (ANCA-positive vasculitis). To my knowledge, though, there are no known such issues with methimazole.

[WWWI2]

#1182067

Kimberly

Thank for that information. I thougth I had read that long term use is not out of question especially low dose. But I will ask her why this is her philosophy.

I get a little anxious because I think she’s really good. I know she’s really responsive, but she doesn’t seem all that interested in Antibody tests at least at this time, she has limits on atds and she considers add back therapy antiquated and I’m not sure it is. I don’t know if these are deal breakers or not, but they seem to go against some of the common themes here.

Just don’t know what to think.

WWWI

[Kimberly]

#1182066

Since your doc is knowledgeable and responsive, it’s definitely worth a frank talk on the long-term ATD issue before giving up! Maybe bring in the guidance from AACE/ATA and use that as a starting point for the discussion.

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