[adenure]

in reply to: About to get results…nurse pulled my chart but hesitated and said…ahhh let the doc read and call you back #1173756

Darcy,

I know you don’t feel like laughing, but your “I shall not be moved” if I have to pee was too funny! 😆 And the skin brush, didn’t know they made those! I think I need one too!!! I don’t know girl, but I wouldn’t be too excited about increasing methimazole to 10 mg either if my T4 & T3 were normal and I was feeling fine. Are you able to get a hold of your endo & talk directly? Does she have email? Are you still considering TT as well as RAI? I hope it all works out for the best for you- you deserve it! Hang in there!

Alexis

I’d write more, but I’ve got to get back to teaching my boys- have a good one!

[adenure]

in reply to: Well, here goes! #1173473

Hi!

Welcome! I’ll tell you, until I was diagnosed with Graves, I never suffered from anxiety or panic attacks. I did have one panic attack once many years back bc of a scary situation, but not because I was taking a shower and was scared to be alone or of passing out or because I was alone with my kids (which is what Graves caused). I mean how silly! I have 4 boys and have homeschooled for the last 4 years and have always been a stay at home mom and NEVER was afraid of taking care of my own children at all. Yet, when I got Graves (after my 4th baby was born), I was having panic attacks, constricted breathing, fear, crying, heart palpitations, sweating, tremors, tons of anxiety. Yeah right there’s no correlation… The 1st doc. I saw sent me home with a paper bag and told me I had a panic disorder. Another thought I had post partum depression. Finally blood test were run and my .01 TSH prompted further tests and the eventual diagnosis! Yay (sort of)- at least I knew I wasn’t losing it!

I’ve since had a thyroidectomy 7 weeks ago and am now on the other side of the fence, in the process of getting my Synthroid dose figured out. It’s not easy either, but I’ll take this over being hyper any day. I still deal with insomnia and headaches, but I’m hoping once my dose is right, I’ll be as good as gold! I too was on methimazole at the beginning, but it elevated my liver enzymes 8 times the normal amount, so I had to stop the ATD’s. I wasn’t comfortable with RAI (just my personal preference), so I went with surgery. Fortunately methimazole had regulated my thyroid levels for surgery.

My mom and aunt are hypo and my great grandmother had a goiter, so I suppose there is a predisposition for thyroid issues.

It seems like, because of your history, going the definitive route would be a good idea. I’ll tell you that since having the surgery ALL my symptoms have gone away (except insomnia which leads to headaches). I’m a little moody (probably bc my Synthroid isn’t quite right & I’m sleep deprived), but I’m not anxious or having panic attacks anymore- heart rate is back in the 60s, no tremors. I feel woozy sometimes- but I chalk this up to my sleep issues as well plus as you know, life doesn’t stop bc we’re sick. So, through my recovery I’m trying to care for my boys & still school them. Fortunately they’re smart little buggers, love to read, and I’m doing pretty well for the most part. It feels good to be on the road to recovery. I say take that step and head towards getting yourself back.

Alexis

[adenure]

in reply to: First post-thyroidectomy lab results – help? #1173422

Hi!

The one thing that sticks out is how low your T3 is. How are you feeling? I think most people feel better in the upper half of the range with T4 & T3. Can you get your free T3 tested to see how much is available for your body for energy? Three months seems like a long time. My endo. is having me do bloodwork every 6 weeks until my numbers stabilize. Mine is kind of odd as my TSH is hypo (6.35) yet my Free T4 is high end of normal and my T3 is just below the mid range. I guess our bodies are still out of whack from surgery and adjusting to Synthroid. I think it’s a wait and see patience game, but I think 3 months might be a bit long to wait for new labs.

Alexis

[adenure]

in reply to: Had RAI and so far so good #1173367

Congratulations on taking a big step to wellness! It does feel great to finally make the decision and “bite the bullet” I think! I too worried a lot about choosing between RAI & surgery. I opted for surgery and had my thyroidectomy 7 weeks ago tomorrow. It feels really good to be on the path to being healthy & being “me” again. Whatever treatment choice we make, it’s always great to feel like we’re heading in the right direction! Thanks for sharing; let us know how you’re doing!

Alexis

[adenure]

in reply to: How Long For Beta-Blockers #1173353

Hi!

Yes, you absolutely must get in sooner than 6 months. I had to wait a month, but I called daily, twice a day, asking if there was a cancellation. Then I asked my GP to give me an emergency referral. Once she did that, they called me and got me in that week. I was losing 1 lb. a day, diarrhea, not eating, basically a mess!

You mentioned that your doctor is willing to prescribe the medication (ATD), but can’t follow up with labs?? I’m trying to understand why he’s willing to prescribe medication, but unwilling to write up a lab slip? It would seem that GP’s can interpret the most basic of thyroid tests. He must have to diagnose you. I would ask him to prescribe the ATD (since he said he was fine with that) and then ask for a TSH & T4 test 6-8 weeks later telling him that you’re calling the endo. daily to get an apptmt. sooner– maybe you could approach your GP with that idea- that you’d like the ATD’s and a lab slip, but will continue to call the endo daily with the hopes of getting an apptmt within that time. I don’t know, but I do know that waiting 6 months while you’re hyper isn’t okay (especially since you’ve been on betablockers since May). Diet and lifestyle changes are helpful, but they are not going to really sway your treatment one way or another. Eating healthy and avoiding stress are important, but you need treatment and monitoring (labwork) more than anything. Don’t give up on your GP just yet; sometimes a little prodding will go a long way.

Do avoid exercise until your levels are stable though (even if your heart rate is stable and in range). Graves give our bodies and hearts a beating; exercise won’t help and could very easily make things worse right now.

Alexis

[adenure]

in reply to: newly diagnosed while planning to conceive #1173319

Hi! I was diagnosed with Graves after my 4th baby. We probably aren’t going to have any more children. I did want to encourage you though to try the ATD’s. I have a friend who has had Graves for 10 years and has had 4 children through out and breastfed them all. She has taken both PTU & methimazole at different times through out.

I ended up choosing surgery because methimazole caused me liver issues (this is very rare- 1% chance, so don’t worry too much about that- just get your liver enzymes checked along with your thyroid levels). Methimazole (5 mg) did get me euthyroid in 7 weeks though! It did a great job there; so, it’s an effective medicine no doubt! It did allow me to be euthyroid for my surgery, so for that I’m grateful!

It’s very possible you’ll be ready to conceive sooner than later on ATD’s- so I would give them a chance and then go from there.

Alexis

[adenure]

in reply to: Long term Methamazole use? #1171483

Hi Karen,

I hope the methimazole works well for you. It did a great job in regulating my thyroid levels; I was at normal levels in 7 weeks (I was on 5 mg.) It allowed me to be able to get a thyroidectomy 6 weeks ago.

Just a side note though, ask your doctor to run a liver panel with your thyroid labs. I did not have any symptoms at all of liver problems, but my liver enzymes shot up and were 8 times the normal amount after 7 weeks of methimazole. I had a baseline before I started the meds., and I was normal at that point. It is only a 1% chance, and it is unlikely you’ll have an issue, but running the labs isn’t a big deal. I would ask for it. My enzymes did return to normal after I stopped the meds.

Alexis

[adenure]

in reply to: What my surgeon said #1173153

Cyber hug! I posted on your thread Darcy.

Alexis

[adenure]

in reply to: OK now what…RAI Seriously??? #1173294

Hi Darcy,

You know I’ve been in your shoes and feel your pain- I really do. When methimazole sent my liver enzymes soaring (I remember it was a Friday night that I got my labs emailed to me), and the on call doctor told me to stop taking the medicine that night, I freaked out! I thought for certain I was going to spiral into hyper hell again. I knew that my only options were RAI and surgery, and on top of it, I couldn’t go back on an ATD to control my levels- I was completely freaked out. Felt like a time bomb and had no idea how much time I had to make my decision on RAI or surgery. I get the fear, the worry, the what if’s. Knowing you HAVE to make a decision and not knowing how much time you’ve got to do it sucks.

What I would say is that, as long as your doctor feels you are a candidate for both surgery and RAI (safety wise, that your thyroid levels are stable enough, heart rate is stable whether with or without the betablocker)— as long as your doctor will support whichever decision you make, and you’ve done your research, go with your gut. Whatever it right for YOU, might not be right for the next person. The important thing here is having your doctor’s support (not necessarily his/ her recommendation though as my endo, like yours, did not recommend surgery- simply bc it is more invasive and there is a possibility of complications- those are very real things, but as far as me, I was a candidate for surgery as my thyroid hormone was stable, heart rate was fine, and I am healthy over all). So, my endo. tried at least 3 times to persuade me to do RAI; he said it was a ‘no brainer’ and said if it was his sister or wife, he would want her to do RAI. I really like and respect my endo., and I still am his patient. He communicates well with me and works with me, listens to me- will order my labs (even the T3 which he didn’t feel was necessary at this point). So, we have a good doctor/ patient relationship. That is important. In the end though, we take the advice, do the research, and have to do what is right for us- whatever that may be.

I didn’t want to be away from my family with RAI (especially my breastfeeding infant). I too worried about eye issues and radiation in general. Before I knew methimazole didn’t work for me, I always leaned towards surgery- not sure why, just did. I knew 1 person who had RAI, she didn’t recommend it. Again, I KNOW that it works well for many, many people– just like methimazole works well for many, many people. But, everyone is different, and my gut told me surgery. So, I was fortunate to have a wonderful surgeon and a surgery without complications. Do your research, talk with and listen to your doctor, and then go with what is right for you.

Alexis

[adenure]

in reply to: ~~ Liver F(x): ALT/AST & Methimazole ~~ #1173315

I would trust your doctor and just ask that your liver be monitored along with your thyroid. It sounds like you will get these numbers next week, so if methimazole is causing you any liver issues, you will know- so that is a good thing! In my case, my liver enzymes were normal before methimazole and 8 times the normal amount on just 5 mg. 7 weeks later. It was pretty clear what was causing the problem!

Since your enzymes are elevated, I would stay clear of Tylenol and alcohol. Take Advil (metabolized through the kidneys instead of the liver) if you need pain relief.

If methimazole does end up causing problems, I wouldn’t switch to PTU as there is a 50% chance of having liver issues on PTU if you have them because of methimazole (I don’t have the reference for this, but it is from a primary source, as after my issue with methimazole, I did a lot of research to see if trying PTU made sense- which it didn’t.) My endo. was willing to let me try PTU, but he didn’t recommend it. So, RAI or surgery were my choices. I opted for surgery.

Don’t worry though; it’s not likely that methimazole will cause you problems; I think it’s only a 1% chance. Either way, you’ll know soon. The liver regenerates quickly, so if there are problems, you should be fine once you stop the meds.

Alexis

[adenure]

in reply to: Lab Results help? #1173281

I second the request for liver enzymes being checked. Yes, it is a very small chance, but it can happen. I was on 5 mg. daily and in 7 weeks (when I got my 1st labs done) my enzymes were 8 times the normal range. I had a baseline before starting methimazole, and they were normal at that time. I’m sensitive to medicine in general, so I asked my endo. to check my liver just bc I wanted to be sure- glad I did! I didn’t have any symptoms like fever, jaundice, dark urine, sore throat. Also, as soon as I stopped methimazole, my liver enzymes returned to normal- no problem at all. My GP even ordered an abdominal ultrasound to be sure, and I was totally fine. So, if you happen to be part of the “lucky” 1% , fortunately the liver regenerates quickly. Better to be safe, right? An easy lab to do.

Alexis

Also CONGRATULATIONS on 100 days! Well done!!! 😎

[adenure]

in reply to: Labs After Thyroidectomy #1173258

I wondered if it was a pituitary issue, but the truth is, before my surgery, my numbers all made sense. When I was hyper, my T4 & T3 were high (out of range) and my TSH was .01. When I was normal on methimazole, my TSH was around 1.28 with my T’s in range. So, the funky numbers are something new that has only happened after surgery. That is what would lead me to believe it’s surgery related/ losing my thyroid & my body not being sure what to do with it all. I thought if it were truly a pituitary issue, it would have shown itself prior to surgery. Who knows though.

No one thinks my headaches are hormone or Synthroid related… :rolleyes: Well, maybe not, but I don’t know that my hormones and my body going through what it has been through the last 8 months is helping anyway… I try to stay busy, take Advil or Tylenol if I need it and do the best I can. I’m hoping the Synthroid dose increase will help some. We’ll see…

Alexis

[adenure]

in reply to: I need help in Canada #1173265

VanIsle gal or girl?? I think she’s a frequent poster. I believe she’s contemplating surgery or RAI at this point.

Alexis

[adenure]

in reply to: Labs After Thyroidectomy #1173256

Thanks Caro

My endo says I need time… boo! Oh well. He did increase my Synthroid to 112 mcg & told me to get labs in 6-8 weeks; oh the waiting game… I want to feel like Mary Katherine Gallagher: “Supah Stah”!!!

Alexis

[adenure]

in reply to: Positive attitude #1173241

Hi Shirley,

I agree with you that it IS okay to feel discouraged and down over being sick or certain circumstances; I think it’s normal. I’ve recognized though that when I let those feelings take over (even temporarily), they can lead to despair and feeling much worse- physically and mentally. It’s not easy to pull myself out of that sometimes, but my faith, my husband, and a funny show/ movie, a distraction of some sort can help a lot. Playing with my children helps a lot until I start to feel cruddy, and then I get discouraged about not being able to just go on and on playing with them like I used to. But, the time that I am able to get out of my own head/ worries about Graves, I do feel better, even if it’s only bc I’m distracted. It’s momentary, but it helps.

Until I’m “normal”, it’ll be in the back of my head no doubt, but I have to try to stay positive. I read a quote that said something like “Life isn’t about waiting for the storm to pass, but about learning to dance in in the rain.” I’ve really tried to hold onto that one. Because I think, any one of us could suffer a terrible accident/ tragedy or even death at any time. All we have is now, and for my own sake and the sake of my family, I have to make “now” be as good as it can be. I’m guilty of letting Graves take over a lot of my time and mental energy since I was diagnosed, but I’m trying to not let it get to me too much. Of course, when I was hyper, that was near impossible, but now that I’m on somewhat of a path to being better, I have to try to live again.

One thing I DO think is important is that when someone is suffering a lot and dealing with difficult illnesses or problems, telling them not to feel down or discouraged is wrong. I had a family member (with the motive of trying to help me) do exactly that, and it really upset me. I felt even more guilty than I already did about feeling down and it just made me really sad. Yes, we should try our best to stay positive and find the good moments, search out funny moments that make us smile– even if it is just a distraction like a funny movie. Going through the normal spectrum of feelings is important though.

Alexis

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