[adenure]

in reply to: Labs After Thyroidectomy #1173253

Thanks for the reply Shirley. I don’t know; I’m just discouraged bc I wanted my numbers to “make sense”. When I was hyper, they all said hyper! When I was normal on methimazole they all said “normal”. Now they contradict each other. I mean dessicated piggy stuff when I referred to natural hormone supplement- like Armor. Wasn’t sure if that would be better than Synthroid- maybe the lower T3 means I’m not converting efficiently? Obviously I am converting, but maybe not well enough for my TSH to be lower? I don’t know. My endo. isn’t a fan of things like Armor/ Naturethroid. He’d probably let me try it if I insisted, but I don’t know if that’s the right thing to do. Then I thought maybe adding a tiny bit of Cytomel to the Synthroid could get the T3 up and the TSH down? I don’t know- I’ll be talking with my endo, but my TSH is essentially going up relatively quickly it seems. I don’t get it. Kimberly… anyone?

Alexis

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in reply to: Positive attitude #1173233

I think you’re right. It is hard though. I know things could be WAY worse, but it’s hard when you’ve been relatively healthy your whole life and then whammo! It’s frustrating & discouraging when you’ve basically just lived your life not even thinking one bit about your body, mind, physical health just because it was always there. I never took it for granted exactly, but oh how I miss sleeping well, having no headaches, and being able to just do what I have to/ want to do. Ah well, I shouldn’t be a complainer. I know I’ve come a long way since being diagnosed and am on the right path, but I’m hoping to be able to sleep well again someday and wake up and not have a headache. I know so many of you have had a much harder time and longer journey with Graves than I have, and I am so impressed by everyone’s perseverance and positive attitude. My mother in law has Brittle’s (?) diabetes; she tests her blood 6 times a day at least and has huge swings in blood sugar levels- she’s up 4 times a night bc her levels go so low- very dangerously low. Yet, she deals with this day and night and has the most positive attitude I’ve ever seen. I’m trying to learn. You are right, Jules. Positive attitude is important.

Alexis

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in reply to: What my surgeon said #1173149

I think VanIsle Gal means that she had relapses. She went into remission and then relapsed twice (the first bout with hyperthyroidism was probably her Graves diagnosis).

Alexis

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in reply to: THURSDAY NIGHT AT THE SAN DIEGO CONFERENCE #1173051

I told my husband about it and he encouraged me to go and meet you all! We live in San Diego- only about 10 minutes from the conference! I’m not sure what will be going on in October, but it would be fun to meet up at some point, even if I don’t end up going to the conference, but just to say hello! I’ll have to check it out more and see what it all involves, price and all that. But, either way, saying hi would be neat!

Alexis

[adenure]

in reply to: Crazy Journey #1173164

Hi!

Don’t you love moms??!! They’re the best! My mom factored into my healing through my Graves journey as well! I too am a person of faith and I’m not a believer in coincidences. My Graves was discovered after I had my 4th baby, but more because of an allergic reaction triggered by azithromycin. I chalked up my symptoms to post partum issues and being tired, run down. The azithromycin episode pushed my body over the edge and got me into the doctor to have blood work and diagnose hyperthyroidism with a referral to an endo who did more blood work (antibodies as well) and diagnosed Graves which was further confirmed with an uptake scan. If it hadn’t been for my scary bout with azithromycin, I would have probably kept thinking it was all baby related!

I started methimazole (5 mg daily) for 7 weeks, but it raised my liver enzymes 8 times the normal amount, so I had to stop taking it right away. It did level out my hormones fortunately, so I was able to have a total thyroidectomy 5 weeks ago. I was not comfortable with RAI for many reasons, but I know that it is the right choice for others. The first surgeon I met with left me uneasy, so my mom (here’s where mom comes in!) told me to come out to where my parents live in CT and have the surgery done there by a surgeon she’s worked with and knows well. She’s a surgical technologist (has been for 20-25 years- not sure exactly). She called her anesthesiologist friend as well and basically assembled her favorites for me! Wow, what a blessing. Plus, we stayed at my parents for 2 weeks- made it a family vacation of sorts and I was spoiled as I recovered. Very, very grateful indeed. My surgery went super well with no complications. I was a good candidate as my thyroid levels were normal, I took SSKI (potassium iodine) drops 7 days before surgery to shrink my thyroid and draw blood away from it to make the surgery safer, my heart rate was fine, and apart from Graves, I am a healthy person.

Right now I’m on the hormone journey- waiting to get labs to get the Synthroid dose right, requires patience and I have headaches, hard time sleeping, and I don’t feel quite right, but I know that with time it’ll get better . It’s a journey, that’s for sure. I am happy with my decision to go with surgery; that isn’t to say RAI is a bad choice or that long term ATD’s are a bad choice. I probably would’ve tried for remission if my liver hadn’t had such a hard time, but knowing for sure that hyper symptoms won’t be visiting me again is a nice relief.

It sounds like, if you are able to get your hormone levels normal, surgery would be a good option for you due to the mass found. I had nodules, but they weren’t very big; they tested them after surgery and were benign. Good luck to you & stay in touch.

Alexis

[adenure]

in reply to: What my surgeon said #1173141

Hi!

Well, that sure is a lot to take in! I feel for you, as the 1st surgeon I spoke with pretty much said the same type of thing (although not quite as abruptly!) I left in tears not knowing what to do. I was fortunate to have access to another surgeon who gave me a lot more confidence in my decision to proceed with surgery which I am very glad I did. Yes, all those risks that your surgeon told you are very real and it is his job to inform you of them. My endo. was pushing RAI over surgery every time I talked with him. His big concern was the invasiveness of the surgery, the various factors, risks. In his mind, RAI was a “no brainer” as he put it. Yet, for me, it wasn’t that simple. I have 4 young children including a nursing 8 month old and RAI never sat well with me. That doesn’t mean it isn’t the right choice for many people, but for me, it didn’t feel right. So, I opted for surgery. My endo. supported my decision, but it wasn’t his recommendation.

I think, that if you’re going to choose surgery, you want to be sure that you are as good a candidate as you can possibly be. Make sure your thyroid levels are stable, take the SSKI drops for 7-10 days before surgery (prescription), if you have any heart rate issues, stay on your betablocker. Have you had surgery before? Have you had any issues with intubation? Some people are hard to intubate, and I could see that if this is a problem you have, a thyroidectomy might be harder on you than on someone else. My mom is someone who has a difficult time with intubation and can’t swallow pills bc of where her larynx is located- it happens I guess. If you are a good candidate medically and your confident in your surgeon and you feel that, deep down, this is right for you, then knowing all the risks and willing to take them, move forward with your decision. This is a hard decision, I know. I was really set on surgery, but I still cried, agonized, and worried like crazy. It’s normal. Look realistically and objectively at your circumstances (especially how balanced you are thyroid level-speaking) and then decide. Is your endo. supportive of you decision (even if it isn’t his recommendation)?

Like I said, I’m really happy about how my surgery went; I was very fortunate. Everything went as well as it could have with no complications. I know not everyone comes out of surgery as well as I did, but I know a lot people do. Hhchong had a thyroidectomy (on the boards here) 2 weeks after I did and did very well, Shirley did great, I did very well, PolishTym (I believe?) did well. So, good outcomes do happen (for both surgery & RAI). Figure out if your’e a good candidate for surgery and then decide. Let us know how you’re doing & what you decide on.

Alexis

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in reply to: Alcohol and Tapazole #1173102

Good plan; usually if you have liver problems on methimazole, it tends to happen within the first few months. It can happen anytime, but not as likely later on if you were fine from the get go (as long as your dose doesn’t change I would think.) As far as pain medication, ibuprofen is metabolized by the kidneys. When I was on methimazole, that’s what I took.

Alexis

[adenure]

in reply to: Alcohol and Tapazole #1173099

They probably are unrelated, but since alcohol, Tylenol, and methimazole are all metabolized by the liver, if one of the above is over taxing the liver (like 12 hours of drinking), it’s possible that IF Alyk’s liver is having a hard time with the methimazole, the alcohol won’t help matters. I remember when my liver enzymes came back 8 times the normal amount, the on call doctor asked me if I had had a lot to drink the night before. Hee hee (no, not even a drop- it was just the methimazole that suckered punched my liver). The good thing though is that the liver does regenerate very quickly. So, although I don’t know if it’s a great idea, you’re liver will probably be okay for 1 night. I don’t know- I wouldn’t. You need your liver. Maybe while it’s starting a new drug, it might be good to treat it a little bit carefully until you’ve established how your body handles the methimazole.

Alexis

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in reply to: Alcohol and Tapazole #1173096

I think it depends on the person. Are you sensitive to alcohol, drugs in general? I am. I don’t drink, so if I have 1 glass of wine, that’s plenty enough for me. I also had liver issues on methimazole; my body is just sensitive to most things. So, I guess I would use that as a gauge. If it were me, I’d skip it. Making sure my body works well with the methimazole would be more of a priority than a drinking party I guess. There’s always next year. Since having Graves and dealing with issues that have come up on my journey with medications, surgery etc etc…, some things have had to take a back seat for the good of my health.

Alexis

[adenure]

in reply to: Old Man at a Party… #1173092

Thanks all. I know what you are all saying is true, it’s just hard to hear comments like his out of no where (especially when I’m emotional as it is and my patience is wearing thin with all of this and I want to feel good, now- yes, no doubt there.) Then the big worrywart in me thinks, “Oh no! What if he’s right?!!” Stupid, but true. Thanks for the encouraging words. I need to hear them sometimes (a lot!).

Shirley,
Thanks for asking about Zack. He’s doing really well- very happy baby & nursing very well too! All my boys are doing great. My oldest is struggling with his asthma though, so we’re trying a new inhaler maintenance med. and hoping it will help him. My husband has been great and really supportive. I am so grateful; without him, this would be so much harder. So, I am blessed in many ways. I have to try to stay positive and just find the good and the fun moments in each day and keep on plugging along. Hopefully I won’t hear too much more unsolicited advice from complete strangers! Geez.

The man who talked about iodine to me- his nephew was hypo I guess (he still has his thyroid though). I don’t know- I hope he’ll be okay in the long run and will still keep up with his doctor.

Alexis

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in reply to: Old Man at a Party… #1173087

Also, I wanted to ask/ mention… if my free T3 comes back low, does adding Cytomel make sense? My husband actually feels that if I do a combo, that he’d rather me take Naturethroid or Armour (something natural opposed to synthetic). What’s your take on that? I don’t know- it’s all overwhelming for a girl who likes to get things figured out quickly. I thought a Synthroid/ Cytomel combo would be better bc you can dose the T3 & T4 separately instead of a combo in 1 pill? I don’t know.

Alexis

[adenure]

in reply to: Labs After Thyroidectomy #1172918

Hi hhchong!

Good to hear from you. I didn’t get a T3 lab unfortunately at 4 weeks, but I’m going to get labs done again in 2 more weeks (I’ll be 7 weeks at that point, although my endo. said I can do them at 6 weeks if I want to- I just might do that!). He ordered TSH, Free T4 & Total T3 for that lab. Unfortunately, Kaiser does not do free T3 (stinkers), so I’m going to pay $85 and get it done myself! Hey, it’s my health, family, and well being and it matters.

As far as how I’m feeling… well, eh, not great. Surgery wise- all went really well- no complaints there. Hormones… that’s another story. I’m on 100 mcg Synthroid (brand) and feel tired, headaches, down. Makes me sad. My sleep is okay- I usually sleep 4 hours, wake up, and have a hard time sleeping after. I’ll sleep an extra hour or 2, but not a really solid sleep (unless I take a Benadryl!).

My endo told me that our body’s stores of hormones can last up to 2 months, so it would makes sense that we start to fatigue and feel these symptoms as time goes on. He told me 6-8 weeks is when we can get a more accurate measurement of thyroid levels. He told me total T3 was good enough, but I want the free, so I’m paying. He wasn’t even going to order T3 at all, but as you know, this is our life, well being & I want to get it right.

What’s really frustrating is wondering if I’m on the right meds, right dose etc etc… it’s hard. Oh well. Time will tell. I hope you’re feeling pretty good & doing well.

Alexis

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in reply to: Depressed / Fatigued – Frustrated #1173040

I’m sorry I feel your pain- at least a little anyway. I had my thyroidectomy (total) 5 weeks ago and I’m feeling yucko too. The surgery went really well, so that’s a big plus. The hormones are out of whack though. My TSH was 4.15 last Saturday and my free T4 was mid- high normal range- how weird is that? I don’t know my T3. I asked my endo. to test the T3 when I go back in 2 more weeks to be tested. He won’t change my dose bc he wants to wait at least 6 weeks post op. if not 8. I don’t think I can wait that long. So, I compromised with 7 weeks if I can hold out. I have headaches everyday and screwy sleep, and yes I’m down too. Depressed? Yeah, I guess so, but I’m trying to stay positive. I start crying just bc I hate feeling like this- that every second is a struggle of positive talk and trying to “hang in there”. No fun. I’m on 100 mcg of Synthroid. I am keeping in mind Nature Throid (T4 & T3) combo, but I am willing to give the SYnthroid a chance to work. I’m just hoping it does. I have 4 young boys that depend on me all day (not just summer as we homeschool). So, I really need to get straightened out here at some point. It’s tough and it can be so discouraging- bordering on despair at times. I’m just super grateful my surgery was complication free and went well. The hormones are enough to deal with. Well, let’s hang in there girlfriend! 😎

Alexis

[adenure]

in reply to: Liver Function #1173036

YAY! Lucky girl It’s always good to have one’s mind put at ease!

Alexis

[adenure]

in reply to: Liver Function #1173032

Hi!

40 mg. is quite a lot, but from what I’ve read, a lot of doctors tend to wait to see if a patient develops symptoms of liver problems instead of ordering tests. Dark urine, yellowing skin/ eyes, fever, sore throat are symptoms. Knowing my tendency to be sensitive to medication, I asked my endo. to order the liver panel when I was on methimazole (only 5 mg.). I had no symptoms and had only been on it for 7 weeks. He said he had only seen liver issues once or twice in his 12 years of practice. Yet, there I was with liver enzymes 8 times the normal range 7 weeks later! I stopped the meds. that night obviously. 3 days later my enzymes were retested and they were coming down & eventually, they were totally normal once again. My baseline was normal before methimazole, so it wasn’t from being hyper at all. I would get the lab done if you can- just for your peace of mind anyway. You’re probably fine as liver issues are not common, but why wonder about it when you can know with a blood test? Especially at a high dose, I would do it.

Alexis

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