[adenure]

in reply to: RAI or Surgery? #1172985

I started the Synthroid on day 2 after surgery as well.

Alexis

[adenure]

in reply to: RAI or Surgery? #1172984

Hey! You sound like me, exactly! I kid you not! I was diagnosed with Graves after having my 4th baby. I was on methimazole for 7 weeks (5 mg) and my liver enzymes were 8 times the normal level. So, obviously I had to stop the methimazole. Fortunately, my thyroid level stayed normal for 6 weeks & I had the surgery 4 weeks ago. I didn’t want RAI either for many reasons (my children, I’m breastfeeding, eye worries, waiting for it to die, might not work the 1st time etc etc…). My surgeon was GREAT! He did a super job and I had no complications at all. I’m healing well from the surgery and am happy with my decision. That being said… the hormone ride isn’t quite over as my body is trying to make heads or tales of my hormone right now. I’m on 100 mcg. of Synthroid and my TSH is mildly hypo, yet my T4 is at the high range of normal. I experience mild hyper & hypo symptoms together- weird. But, in 3 weeks I get another set of labs and we’ll hopefully go from there and start getting things normalized hormonally. I really hope so. Whether you choose RAI or surgery, the hormones will be dealt with one way or the other. Same with ATD’s. I do feel better than when I was hyper and even when I was stabilized on methimazole. So, the surgery was the right choice for me. I’m just hoping to get my hormones squared away sooner than later, but I know it takes time.

As far as surgery recovery, the first 48 hours are hard (but not impossible, I only took Advil for pain). Day 6 I felt better. My voice was weak and tired easily for 3 weeks. It’s fine now. I took Tums for 3 weeks while the parathyroids were inflamed. My calcium has been tested and is fine now. I needed the Advil for about a week I’d say, then no medicine. I am very happy with my choice as far as how to deal with Graves. If I could have stayed on methimazole, I probably would have. But, it wasn’t an option.

Alexis

[adenure]

in reply to: Hours until surgery #1173010

Hi! I’m happy for your son that he will make the turn to recovery soon! I had a total thyroidectomy 4 weeks ago. Everything went well- no complications and I’m healing very well from the surgery. The first 48 hours are tough; on day 6 I made a turn for doing better. My voice was weak and tired for about 3 weeks. But, it is fine now. I started 100 mcg. of Synthroid on day 2 after surgery.

I do want to prepare you though for the fact that it will take time to get his hormone levels normal after. I’m in the middle of that process and it is not the most fun I’ve ever had… NOT as bad as being hyper by any stretch, but it’s tough. My labs a few days ago show that my body is pretty much confused at the moment, but I get labs done again in 3 weeks to see how things are settling down. My TSH says slightly hypo, yet my T4 is high (although normal range). I get a mix of mild hyper & hypo symptoms. I hear this is normal. I was hoping for a “quick fix” and a completely smooth ride each day getting better. Each day I AM better as far as the surgery, but the hormones are a little different. Just wanted to kind of put that out there so that you and your son keep that in mind and, if he feels not so hot some days, to try to stay positive and know it’ll take time to get our hormones straightened out- that’s where I’m at now. But, Yes, absolutely, it’s way better than being hyper or on the ATD’s (at least for me anyway!) Here’s to a smooth surgery!!! Also as a side note, I just took Advil for pain (for about a week). The surgeon prescribed vicadin, but I didn’t need it. The pain isn’t too bad. That is a plus!

Alexis

[adenure]

in reply to: What happens next? #1172875

Yes, I’d agree that it’s quite the journey. I’m about 7-8 months into it. I’ve already posted my story, but I’m 4 weeks post- op now. Surgery couldn’t have gone better, thanks be to God for that. But, getting hormone levels even isn’t so easy I guess. I had labs done which show a mild hypothyroidism, but normal to high T4. My endo wants me to wait another 3 weeks and have another set of labs (with T3 thank goodness) and then he’ll decide what to do, but he won’t change anything just yet as far as dose or the drug itself. It’s hard to hear, “Wait 3 more weeks” when you have headaches, require Tylenol fairly frequently, and can’t sleep more than 5 hours a night and feel like you’re dragging. BUT, I do know that I could be back in the hyper nightmare, so yes, things could be worse. It’s just hard to be patient and take it a day at a time. Not knowing what the future holds is tough. I’m still not at peace with that I guess. I’m hoping once my hormones are leveled out, I do pretty well and don’t have any more complications from Graves. I hope you do well too!

Alexis

[adenure]

in reply to: Labs After Thyroidectomy #1172913

My endo emailed and ordered another set of labs (including T3- yay!), but he wants me to wait 3-4 weeks- ugh. I feel like crud bc of my headaches and sleep issues. I hope I don’t go more hypo in that time. Does anyone know (I know you’re all not doctors & I did email my doctor this question back) if the body’s stores of thyroid hormone would still be present 4 weeks post surgery? I was euthyroid going into surgery (for 6 weeks). I know everyone is different and I guess who’s to say, but I wondered if there was a ball park idea there? Man, it’s hard trying to get normalized- very taxing.

Alexis

[adenure]

in reply to: Labs After Thyroidectomy #1172911

Hi Kimberly

I emailed my doctor my concerns and my request (again) for T3 lab. It would seem it wouldn’t be a big deal to see where that is. Maybe the Nature-throid combo would be better- I don’t know- hoping he’ll communicate and work with me on this. I want to feel like myself 100% again- I’m not terrible, but the headaches and sleep issues are no fun.

Alexis

[adenure]

in reply to: Immunologist and GD #1172865

I think immunologists deal more with allergies & asthma. I just don’t think any immunologist would really have the training, education, knowledge or experience dealing with Graves Disease patients, so they probably wouldn’t have too much input. As it is, some endocrinologists are more up to date on diabetes issues than Graves, and endocrinology is more where our issues lie.

I know that the way we eat can influence our health in a positive or negative way, but I don’t think any type of diet will have a drastic effect on improving Graves or hyperthyroidism. We can limit iodine, but no diet or food will cure hyperthyroidism. I’ve seen the claims online, and I think it is unfortunate as it does a disservice to people and could potentially lead people down a dangerous path. Truth is, more fruits, veggies, nuts, whole grains, and healthy fats are what EVERYBODY should be eating- no matter if you’re healthy or sick. The more “whole” the food the better. I’m even trying to eat that sprouted bread that spoils within a few days of purchase. I’ve been a healthy eater for awhile, but I’m trying to eat even better now that I’m
on the path to being well again. I want to be as healthy as I can.

Alexis

[adenure]

in reply to: seasonal allergies and TED #1172847

When I took Benadryl to help my insomnia while I was hyper and even when my numbers were normal on methimazole, I woke up with a racing heart (especially when I was hyper). I believe novacaine & ephedrine have the same effect on someone with Graves. I have read a few articles on line that people with hyperthyroidism should be “wary” (as it was put in a nursing article) using antihistamines. My endo told me to take the Benadryl when I was dealing with insomnia while I was hyper, but the 2 nights I took it, I woke up with a racing heart and sweating. So I stopped using it.

Alexis

http://e-edcredits.com/nursingcredits/article.asp?testID=1 (That’s the article).

[adenure]

in reply to: Introduction and frustration #1172821

Wow Mindy! That is quite the ride! Definitely time to get off the roller coaster! I would get my numbers as stable as possible and then get rid of that thyroid! I know that’s your goal with RAI. Like Kimberly mentioned, is surgery a possibility for you? My numbers were not as hyper as yours and I only was on methimazole (a small dose) for 7 weeks, but it got my levels normal and I had surgery 3 weeks & 4 days ago. I took SSKI -potassium iodine drops- for 7 days before surgery to shrink the thyroid and pull blood away from it. My endo said that, used for up to 10 days, SSKI drops also help to establish normal thyroid levels as well. Of course the glitch there is if you take it past 10- 14 days, it can “fan the fire” and cause hyperthyroidism to worsen, so if you start it for surgery, you kind of need to see it through.

If surgery is a safe possibility for you, I would recommend it if you have access to a really good surgeon who does a lot of thyroidectomies. Everyone is different, and maybe RAI is what you are most comfortable with, but I feel remarkably better since having the surgery- better than I did even when my numbers were normal on methimazole. I started Synthroid 2 days after surgery and never experienced being hypo. I get my labs done in a week to check the dose, but I think we’re pretty close. I’ve read about a “thyroid dump” for a few days after RAI which can give pretty intense hyper symptoms from what I understand. I don’t know, but if your endo is willing to consider surgery and you have access to an experienced surgeon, I would think about it and weigh it against RAI.

Alexis

[adenure]

in reply to: 2nd remission #1172816

Hi!

I was thrown into making a definitive decision sooner than I anticipated bc of the liver issues I had with methimazole, but I’m glad I chose surgery. One thing that is nice is knowing that I don’t have to worry about going hyper again. It is a big relief to have that out of my mind/ subconscious.

Five years of normal thyroid levels- that’s great. I wonder if the length of the remission has anything to do with how likely you’ll have another remission? I don’t know- maybe something to ask the doctor. Or if your numbers aren’t that far out of range maybe it’s more likely too? I’m just throwing out ideas/ questions to ask your doctor maybe.

I hope the right decision comes to you and all works out well. Have a good week.

Alexis

[adenure]

in reply to: Crying Fits…Is this normal #1172801

Yes, yes!!! You are “normal” for being hyper. I cried a lot and had panic attacks- although they weren’t huge- but they were scary! I knew it was because of being hyper bc I knew that the way I was acting was NOT my normal self when I was healthy by a long shot. My primary doctor (who was new to me & it was the first time she saw me) though I had PPD (post partum depression- this was my 4th baby, so I knew it wasn’t. I had PPD with my 1st) and she thought I had an anxiety disorder. I knew it wasn’t that either. I thought I had cracked, but I had it together enough to know that this wasn’t “me”. I too questioned whether I’d ever be myself again and was really scared that I might not be. But, I can tell you that since having the surgery (3 weeks out now), I am pretty darn close to being ME again- What a relief! The physical symptoms are scary, but the mental and emotional ones are worse I think- together, they’re a really scary thing! So, yes, what you’re going through is normal. I did start to feel a little more myself on the methimazole, but I have to say that I feel a whole lot more normal & like myself after the surgery than I did on the methimazole in normal range. Might just be me though- everyone’s different.

Alexis

[adenure]

in reply to: What to ask? #1172782

Hi,

Maybe ask him what he suggests as a long term treatment plan. Does he support the long term use of ATD’s, what is his approach there with dosing, how often on blood work, does he take into consideration how you’re feeling as well as the numbers on the lab. “Normal” does have a big range, so that’s a thought. Ask him what his patients tend to do as far as definitive treatments- does he know of any surgeons who do a lot of thyroidectomies in case you decide to go that route- anyone he recommends, works with, refers his patients to (if you’re contemplating that possibility at some point). How does he manage you after surgery or RAI- what would he prescribe, how often are blood tests run- basically establishing that he’s willing to work with you, communicate, monitor your levels every few months while you’re being treated with ATD’s or establishing a Synthroid dose after definitive treatment. My endo. was going to test my levels every 2 months for the 1st year I was on ATD’s if I had stayed that route.

For me, the most important thing is having a doctor who will listen to you and your symptoms, do labs frequently, and communicate with you in a timely manner. Asking how many Graves patients he has would be good too just to see if he is more geared towards Diabetes, other metabolic issues or if he has a basis of Graves Disease patients and experience there.

Alexis

[adenure]

in reply to: Questions about Radioactive Iodine #1172775

Hi!

I took methimazole but had a severe liver issue with it (which righted itself once I stopped taking the meds.). So, I had surgery 3 weeks ago. I’m on Synthroid (synthetic thyroid hormone supplement) and I haven’t had any issues at all. I started taking Synthroid the 2nd day after surgery and I never experienced being hypo. I will get my 1st set of labs to check my dose in about 2 weeks, but I don’t feel as if my dose is too far off from normal (if at all). So, if you have surgery, you might not necessarily go hypo first. It could happen if the initial dose of Synthroid isn’t enough, but that is easy enough to fix by increasing the dose after your labs. It does take time to probably get the dose just right. I don’t feel 100% myself yet, but I’m only 3 weeks post op and am not sure what my eventual dose of Synthroid will be. I will tell you though that I fell WAY better than I did before surgery when I was hyper and WAY better than I did even when my thyroid hormones were balanced on methimazole. I didn’t have symptoms for liver issues, but I still just didn’t feel great on methimazole in general. Not terrible, but not “healthy”. I actually feel pretty darn healthy and strong as of the last few days and it’s reassuring that yes, I will be my normal, healthy self again as far as all this thyroid business goes!

I think healthy eating, exercise, sleep can all help our health and particular circumstances, but I would not rely on them solely to treat Graves and hyperthyroidism. Left untreated, Graves can be very serious, even deadly. Your heart is a muscle and Graves causes muscle waste. Graves is like a whip & your heart the horse getting the whipping (elevated heart rate). It’s nothing to mess with. Beta blockers may help the heart rate, but they don’t slow down or stop thyroid hormone production which can lead to muscle waste and osteoporosis over time.

It sucks having to deal with Grave, but there are ways to make us better.

Alexis

[adenure]

in reply to: Hi, Everyone #1172749

Hi Khandl,

I am very sorry about the loss of your cousin. The sadness and stress of losing a loved one takes a toll on us. You know all too well how debilitating Graves is when we’re hyper. Are you taking ATD’s right now to help manage your symptoms and get your levels back under control? I know you are still grieving the loss of your cousin, but it is important to get back into a treatment regimen with regular blood work.

No, you are not crazy. But, I know what you’re saying when being hyper makes us feel like we are! The real you is in there; when I was hyper, I wasn’t sure if I’d ever be “me” again; that was a huge fear. I have 4 young boys and I spent a good 2 months barely able to do anything but cry, stay in bed and walk down the hall. Fortunately, my in- laws helped me a lot, my husband worked from home some days, and my dad came out to visit. My parents were very understand as is my husband thankfully. Some people did seem to think I should just “snap out of it”- mind over matter type of thing-. I do believe a positive attitude can help, but when you’re body is sick, that only goes so far. I didn’t eat for 2 weeks bc I had no appetite and the sight and smell of food made me gag. I drank Ensure and lost 13 lbs. in a month. My father in law said it was ridiculous and enough was enough and I needed to eat! I know there is concern and love behind people wanting us to just be better and get on with life, but when you’re sick, it just doesn’t work that way.

I’ve told my husband that this forum is the only place where people understand and get it. My husband supports me and loves me, but it’s hard to “get it”. I think what’s hard for people is that Graves is such a long journey of treatment/ healing/ recovery. It’s not like you’re sick and then better all of a sudden. I had a thyroidectomy 3 weeks ago and I feel a whole lot better than before surgery, but I’m not there yet- not 100%. I have friends/ family who think I’ve had the surgery, so now I’m better and all is great- ready to go! Not quite… better yes, but “normal me”- nope. Glimpses and moments and even some stretches of the old me, but not all the way yet.

So, welcome and big cyber hug to you. Get to your doctor and get back on the ATD’s. Once the hyper monster is under control, then you will think more clearly and feel better. Are you considering a more definitive solution? I was sort of pushed into it bc my liver couldn’t handle the methimazole, but I’m happy with my decision to have surgery. It’s nice not having the “what if I go hyper again” hanging over my head.

Alexis

[adenure]

in reply to: PTU and hepatic hemangioma #1172759

Hi! I had liver issues with methimazole (I never took PTU). I was on a small dose- 5 mg a day- and was tested 7 weeks into treatment. My liver enzymes were approximately 8 times the normal amount. They were completely normal before methimazole (I had a baseline) and whamo, up they shot. I didn’t actually have any symptoms like fever, dark urine, or sore throat. Fortunately, my enzymes normalized once I stopped the medicine. They did my labs 3 days later to see if the enzymes were trending back down, which they were. My primary ordered an abdominal ultrasound to check that all was well and I redid the liver labs later and all was normal.

Alexis

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