[adenure]

in reply to: TED again? Double vision again? Not sure I can do this again #1178177

I’m sorry to hear that you’re battling this again. I hope that it will resolve itself! You have been an amazing support to me through out my journey. Our paths were very similar with Graves, hyperthyroidism, having a baby during all of it and breastfeeding. I truly appreciate all of your kind words and support. Prayers for you and healing.

[adenure]

in reply to: Liver enzymes #1178199

Hi,

Yes, after 7 weeks on methimazole (5 mg a day), my liver enzymes were 8 times the normal amount. I stopped the meds. immediately and had labs done 3 days later to make sure they were coming down (which they were). I don’t remember how long it took for them to be completely normal- maybe a month? My general dr. ordered an abdominal ultrasound to make sure everything was okay (which it was).

[adenure]

in reply to: I’m confused by my recent labs.. #1178202

Hi!

No, we can’t interpret labs or give advice. But, yes a TSH of 6.060 would indicate that you’ve swung hypo. If your TSH is above the normal range, than it is hypo. If it is below the normal range, than it is hyper. (kind of peculiar!) You didn’t post the normal ranges, but I believe (in general) the upper end of a normal TSH is 5.00. Yes, if the TSH is high (hypo), than the free T4 (and T3) would be lower, showing there isn’t enough thyroid hormone in the body. The TSH (Thyroid stimulating hormone) is high because there needs to be more thyroid hormone production. Where if your thyroid stimulating hormone (TSH) is low, it is low because your T4 (and T3) are high. So, yes it is an inverse relationship so to speak.

You might still feel yucky bc it sounds like you took a pretty big swing from hyper to hypo in a relatively short amount of time. Swinging never feels all that great. The good thing is that he is making an attempt to right things and scale back some- so that is good. Hopefully that will find your ideal spot with your hormones. Maybe you could ask him if your dose could be lowered and spread out over the week instead of taking the same amount 5 days and then 2 days off? Maybe it would help with evening things out- just a thought. Well, the good thing is your liver is fine and the methimazole is working! Working a bit too well… but, you are on the path to getting normal again, and yes, if you’re still considering TT, keep that appointment!

[adenure]

in reply to: Auto immune trigger – questions #1178039

I was thinking the same thing as Stymie. Sometimes our bodies get so used to a crazy lifestyle, that when we get to relax, it doesn’t know what to do. When I was dealing with daily headaches after my TT, I went to a headache class through Kaiser. The neurologist said that this is normal- that when we’re “on” all the time, we’re fine. As soon as we can relax, the headache hits. The body keeps up as long as it can and then when it can finally relax, maybe it just sort of falls apart a bit. I don’t know- just a thought.

[adenure]

in reply to: Hoping this isn’t too personal #1178144

I’m glad to hear that you’re feeling better! That’s great! I haven’t had my period at all through all of my Graves journey as I’ve been breastfeeding the whole time. So, I don’t know much about that aspect of things. It’s good to hear you’re doing better though!

[adenure]

in reply to: Auto immune trigger – questions #1178033

I believe my trigger was child birth. Then I took azithromycin (which my body did not agree with) and whammo! Into hyperthyroidsim I spiraled. I had some symptoms 2 months after my baby was born (before the azithromycin), but it wasn’t too much or too severe. But, after I took the azithromycin, things got pretty bad and stayed that way. I think my body was just over stressed and worn out. So, now I really do try not to stress too much and take care of myself better. I’m not always successful, but I try.

[adenure]

in reply to: “stable” for surgery….what does that mean? #1177996

Ideally, your thyroid hormones will be in range (normal range). Hopefully your heart rate (resting) will be in normal range as well. My doctor said it had to be no higher than in the 80’s. If you’re close to 100, your surgeon will probably have you on a betablocker if the methimazole hasn’t gotten your heart rate down to normal. The heart rate (per my surgeon) is apparently the biggest concern. An out of control heart rate in surgery was my surgeon’s biggest concern (more so than my thyroid levels).

My thyroid levels were normal at my surgery so I was not on ATD’s. My heart rate was around the 70’s- 80’s at the time, so I was not on betablockers. I did take the SSKI (potassium iodine) drops for 7 days before surgery to reduce the vascularity of my thyroid to make surgery easier- visibility for the surgeon. You do not want to take those drops more than 7-10 days though as they can “add fuel to the fire” as my endo. put it. They taste nasty and you’ll have metallic breath, taste, and poop (sorry!) for those days, but it’s not terrible. I just put it in some juice.

[adenure]

in reply to: Thyroid Storm #1178013

My surgeon said the most important thing is to have the heart rate stable (via ATD’s or betablockers) and ideally, to have the patient euthyroid (thyroid hormones in range) for surgery. Also the potassium iodine drops (SSKI drops) make the thyroid less vascular and easier to operate on. If you have all those in check, then you’re probably good to go. I know of people who have been operated on even though they are not euthyroid, but were on betablockers and the surgery went fine. A friend of mine who had been on ATD’s on and off for 10 years ended up in the emergency room bc of thyroid storm. She was put on betablockers and operated on a few weeks later. She was and is fine now. Thyroid storm happened to her bc she was hyperthyroid, not getting labs done, and was not on any meds/ ATD’s. She also worked long hours and had some very stressful things going on in her life (divorce, trying to find a home to live in, carpool for her kids for school, driving far to work, long hours- ). Fortunately, she is okay now.

[adenure]

in reply to: Looking for graves ladies who have had babies.. How premmie were they? #1177237

I was diagnosed after my 4th was born, and have not had any children since having Graves. A friend of mine though got Graves after her 1st baby. She took methimazole and PTU off and on for the following 10 years and had 3 children during all of that! All her babies were/are healthy and she breastfed them all as well. She had a thyroidectomy about 4 months ago I think.

[adenure]

in reply to: Questions about RAI and TED #1177815

Part of the reason I chose surgery was a fear of TED. I know that TED can happen, even after a thyroidectomy though (as did happen to Shirley). I have dry eyes, but otc tear drops help, and it’s not that bad. But, I would be a liar if I said that I’m not afraid of TED. I mean, it doesn’t occupy my days and my mind or anything, but it’s in the back of mind. I figured if I could avoid something that could contribute to it (like RAI), I would. But, again, I know there are no guarantees.

[adenure]

in reply to: new user 1 year #1177887

Hi Vince!

The best thing to do is research all the options and then go with your gut feeling (as long as your doctor is on board). It sounds like you’re leaning towards choosing something more definitive like RAI or surgery as the methimazole has you up and down a lot.

If RAI feels right for you, then go for it. If surgery feels right for you (and your doctor thinks you’re a good candidate), then go for it. I opted for surgery for a bunch of reasons. I had my thyroidectomy 8 months ago and I am doing well. I’m much healthier physically, emotionally, and mentally now that my thyroid levels are stable (on Synthroid). It’s really a relief to be normal again. I chose surgery because I have a family (4 young children) and didn’t want to be away from them for a week. I also wanted to keep breastfeeding my baby. I was worried about eye issues (even though I don’t have any TED that I know of). I also didn’t want to wait for my thyroid to die out and have a dead gland hanging out in my body. Not really a good reason to avoid RAI I guess, but that’s how I felt. I also kind of wanted to get things moving forward as quickly as possible. Now, it did take 2 months to get my thyroid levels normal on Synthroid (one dose change at 6 weeks post op.) and 2 more months on that dose to start to feel really good again. So, all in all a good 4 months there. But, it was worth it.

Do the research (avoid the websites with thousands of horror stories- I spent many night crying and freaking out about the “what if’s”). Make the right choice for you. It will get better.

[adenure]

in reply to: newly diagnosed #1177911

Hi Jayne,

Welcome! You have been through a lot! Graves doesn’t kill off the thyroid, although I’ve heard the same thing said a few times. Hyperthyroidism that is not managed with methimazole or another anti- thyroid drug like PTU, surgery, or RAI is very, very dangerous. It can actually kill a person. As dramatic as that sounds, an out of control heart rate, heart palpitations- extra thyroid hormone can cause muscle waste and even heart failure (as the heart is a muscle)- also it puts the body on overdrive with symptoms of tremors, weight loss, anxiety, insomnia, diarrhea. All of this can lead to thyroid storm which is a very serious, emergency situation. So, please, do make sure you take the methimazole and don’t wait for the Graves to burn out your thyroid.

I too was always very active and healthy. I do not have Lyme or diabetes. But, since I’ve had my surgery (8 months ago) to get rid of my thyroid, I’m doing better. I’m able to work out 4-5 times a week- 30 min. of hard cardio on the bike, go for walks, and just be active again. It’s not to the extent that I used to be (60 min. spin classes, swimming laps for 40 min. and weight training for an hour). But, that’s okay. I’m glad to be healthy, happy, and be able to work out again. Good luck to you!

[adenure]

in reply to: Tell the Truth…. #1177879

Kimberly,

Before I got married, I did the same thing! Went to movies, the theater, restaurants by myself.

I didn’t get Graves until about a year ago- after having been married for 9 years. But, I am very fortunate. I married an amazing man who has stood by me through it all and steps up to the plate when things get tough. He’s a wonderful husband and a great father.

As far as do we ever live well and happy after hyper/ hypothyroidism. Yes! Yes! Am I 100% pre- Graves me? No, I would say not. But, if I had to give it a percentage- I’d say 90 or 95% there! I feel like having surgery is a big part of that bc I know that I will never swing hyper again (unless I have too much Synthroid). That, in itself, is a big relief from the anxiety and worry about slipping down the hyper slope again. I know others can be on ATD’s, feel good, and be well with that. But, I’m grateful (in a way) that ATD’s didn’t work for me. I was able to move forward quicker and get back to normal. So, although not perfect, I think that we can be well again. Admittedly, I do take better care of myself now as well. Graves gave me the wake up call that I FINALLY listened to: to take care of myself so that I can take care of others. I was very bad at doing that before. I got sick and even hospitalized for meningitis because of stress and too much, but never listened to my body. Now, I do.

[adenure]

in reply to: My insurance only covers RAI #1177727

It’s hard to change carriers with a pre-existing condition. Hopefully your doctor will have success with the appeal.

TT does come with its risks, but those risks are minimal if you are stable (thyroid hormone wise), generally healthy, and have a very experienced surgeon. The vocal chord damage can be avoided if the surgeon uses a recurrent laryngeal nerve stimulator to locate the chords during surgery. Very experienced surgeons don’t always use this, but it can help. The scar isn’t a big deal. Mine is hardly visible at all.

My personal opinion would be to go with the traditional approach to a TT. For some reason having a real person in there doing the cutting rests better with me than a robot. But, that’s just me I guess. I don’t trust machines 100%. People can make mistakes, but I trust the human hand more- just my own perception I guess.

[adenure]

in reply to: New user #1177760

I understand the guilt of not being able to care for your children bc you are sick with Graves. I had a good 2 months of basically being completely unable to care for my children. Fortunately, my mother- in- law, my husband, and my dad helped me during that time. It was scary and so defeating to feel like the ONE thing that I feel I was meant to do and am here for (to be a mom to my children), I could not do. My anxiety was terrible. My heart rate was 120 walking down the hall, I never slept- well, you know how it is…

I did not have RAI. I did have surgery though- 8 months ago- and I tell you that I am 95% or so my normal self again. No more crazy heart rate, anxiety, insomnia, etc… I can take care of my boys again. I can homeschool them, take them to the park, even play a little bit of tag here and there. I enjoy life again. I’m not anxious and scared anymore. Surgery gave me my health back and for that I am grateful. I know surgery isn’t for everyone, and RAI (from what I understand) gives people their health back too. I didn’t choose RAI for a bunch of reasons- 2 of which were I didn’t want to be away from my family and I wanted to continue breastfeeding my baby (now toddler). It sounds like maybe you’re considering a definitive treatment since the ATD’s aren’t giving you 100% relief.

Take time to research and consider your choices and then go with your gut (as long as your doctor approves your choice and feels that you’re medically safe for whatever you choose.) You will be able to be there, healthy, well, and without anxiety again for your little one. Hyperthyroidism makes us not well, but it is not who we are.

[Author]

Posts