[amosmcd]

in reply to: Diagnosed @ 49 y/o #1179162

Hi, Boomer!

I’ve been off the forum for a week while not feeling good, but I just wanted to say how much I enjoyed reading your posts, and I love your sense of humor! Even though you’re feeling bad, you bring a brightness to the forum that is so helpful!

I’m sorry you’ve been going through such a hard time with Graves’. It does totally suck. I had to laugh at your crab-walk to the bathroom posts. In the 3 weeks since my TT I’ve had 2 bouts of “the runs” and indeed actually did poop my pants one time. Naturally when I was not at home. Only saving grace was having some Immodium on hand. What I really needed was to have some Attends on hand, but you get no warning really of when this might occur, so it’s a little too late. In case the post-TT part of this freaks you out, I’ve been going hyper and my dose of Levothyroxine just got lowered today. And I think it was a combo of the oxycodone and anesthesia which contributed to my utter humiliation. I’ve been good for about 5 days now.

Anyway, probably TMI, but I think sharing even the “unspeakable” stuff really makes people feel less alone.

Thanks again for your posts, and welcome to the forum!

Amy

[amosmcd]

in reply to: My total thyroidectomy journal #1178826

Hi, Sue–

I just posted on your surgery thread! Definitely my anxiety the past week was due to being hyper. I tend to be slightly anxious normally anyway, not something that usually interferes with my life, but being hyper sets me off. I hate feeling that way, too!!

Definitely there is an adjustment period. Obviously for me, feeling good immediately post-op was not a guarantee I would continue to feel good. I got blind-sided by it, but I tend to have rapid changes with thyroid levels. That’s the whole reason for getting my thyroid out, because neither of the ATD’s kept my levels stable for long. Without a thyroid to be contributing to the whole mess, the levothyroxine should stabilze my levels, but it’ll take time. Hopefully, the rapid swing I just went through is the only one I’ll have, but I’ve always been a bit medically Abby-normal so knows?

Just be prepared for anything, knowing that eventually things will level out. I know reading about people who are fine now makes me realize it will all work out.

Amy

[amosmcd]

in reply to: Endo Appointment – surgery is now on the table #1179360

Hi, Sue–

I prefer docs who are both good at what they do AND have a friendly personality. I also live in a large metropolitan area that has lots of docs to choose from, so I am able to find both. I’d definitely pick expertise over personality if you have no choice, but go for both if you can.

My surgeon spent plenty of time with me (I saw her once at the office and then right before surgery in pre-op) and freely discussed complications and answered all my questions. I wanted to know when I could get back to my exercising again, who determined the post-op levothyroxine (or Synthroid) doing, when I should stop my PTU before surgery, what I would feel like after surgery, where the incision would be, how large it would be, what sort of scar would I have, etc. Just whatever concerns you may have, write a list and bring it with you to your appt, and write down the answers. If you have a memory like mine, you will forget half of what the surgeon tells you when you leave the office unless written down. They should have pamphlets explaining the surgery and also may be able to access info on their computers in the exam room. (Most docs seem to have computers to access pt records and their own office stuff in exam rooms now.)

Your endo will also be able to answer questions your surgeon may not know. I would schedule a pre-op appt with your endo if you decide on surgery so you can get questions answered about post-op endo care.

It’s scary making a decision. I was a bit freaked out by it, but made sure my questions were answered and it made it much less scary by the time the surgery day rolled around.

Amy

[amosmcd]

in reply to: A Cyclist’s Two Days until TT #1179314

Wishing you the best today! I’m a little over 3 weeks out after my TT. I was also nervous about the surgery beforehand, worried I’d made the right choice, etc.

I keep an online TT journal here and just posted an update today. Hope you find it helpful. Everyone is different with how they recover, so your own post-TT journey will be unique. But expect ups and downs, so you don’t get surprised by them, and keep in close touch with your surgeon and/or endo while you recover (I’m sure they consider me a pest with all the phone calls I’ve made, but who cares!)

Keep in touch with us and let us know how you’re doing.

Amy

[amosmcd]

in reply to: My total thyroidectomy journal #1178824

Okay, I’m back after a bit of a hiatus due to feeling crappy for the past week.

Here’s what’s been going on:

I felt great after surgery until around the middle of last week, when I started feeling really tired, depressed, anxious and my heart rate would go from fine to above 100 and palpitations with me just getting up and walking to the bathroom. I wasn’t sleeping well. I would get dizzy standing up, my blood pressure was low normal, and my forearms started getting shaky (I’ve never had hand shakes, just my forearms.) I was an emotional wreck. I thought last week would never end, so I could just collapse and rest on the weekend. I felt horrible all weekend, and called in sick on Monday because I was so exhausted. (I’m on 100mcg of levothyroxine.) I also have been eating more, but haven’t gained an ounce, and I haven’t been on a walk for a week.

I called my endo’s office Monday (she had left early–a half day) and told them that I felt horrible. They called me back Tuesday and said the endo wanted me to come in and they had an appt yesterday–yay!! So I went in, and she said things definitely sounded wrong since I had been doing so well, and I got my labs checked.

This morning they called with the results and I am now slightly hyper:

TSH 0.13 (0.34-5.60)
FT3 3.1 (2.2-4.3)
FT4 1.05 (0.57-1.25)

The labs don’t look too bad, but my TSH has been trending down and my FT4 is trending up. Based on how good I felt before surgery, I feel better when my FT4 is low normal and my TSH is slightly above 1.0. I know dosage is not based on TSH, but with me it does seem to correlate with how I feel. Anyhow, she’s dropped my levothyroxine to 75mcg. She wanted to see me in 4-6 weeks, but she’ll be out of the office on week 4 and I’m on vacation week 5 and 6, so I’m going in 3-1/2 weeks from now with my labs drawn at the 3 week mark.

My endo was surprised at how rapidly I went from feeling good to bad, but that seems to be the way my body works. I’m going to skip taking the levothyroxine today, since I can’t pick it up until the middle of the afternoon and I usually take it in the morning when I get up.

So my recovery from the TT has taken a little nosedive, but I’m not surprised that I would need a dosage tweak. I feel better psychologically just knowing I was not in fact going crazy.

Another little issue has been my voice. Although it was fine after surgery, once I went back to work and had to talk all the time, it’s gotten a bit raspy and tends to break when I hit high or low pitches while talking, especially by the end of the day. I called the surgeon’s office and they said to give it a few weeks, and if it’s still doing it to come in. It’s more of an annoyance than anything else.

I’d been using Mederma scar gel since last Monday to help reduce the scar, but had an allergic reaction to it (redness and itching) so had to stop. I’m going to switch to Vitamin E oil. The incision itself looks good. The swelling has really gone down. There’s still a hard ridge under the incision, but that has also gone down, and should be gone in the next couple months.

I’m still glad I had the TT, and I guess the lesson learned (which I wish the endo’s office had mentioned) is that no matter how good you feel right after surgery, be prepared that you may not stay feeling good while your body adjusts to life without a thyroid. I’m confident things will eventually level out.

I’ll post again in another week and give you all an update. Hopefully I’ll be feeling a lot better by then.

Amy

[amosmcd]

in reply to: Wish me luck-surgery Friday! #1179071

Hi, Karen–

I hope all goes well for you on Friday and the biopsies are negative. You will get through this. Don’t worry about your Mom and husband, just worry about yourself. I know it sucks when you need support from family and they are not there for you.

We are all pulling for you and wishing you the best.

Take care,
Amy

[amosmcd]

in reply to: Interesting news story re hyperthyroid cats #1178989

Interesting story! I have 4 cats and they all are doing well. I don’t think I’ve gotten any new furniture since I’ve had them. I wonder why some cats get hyperthyroidism and others don’t? And it is scary to think we humans are exposed as well.

Thanks for posting this!

Amy

[amosmcd]

in reply to: My total thyroidectomy journal #1178823

Hi, Gabe–

It worked out nicely to have the break after going back for one day. I didn’t really plan it that way, but glad it did! lol

I wish everyone’s TT experience was as good as mine. Of course, I’m still in the healing phase, so it’s not over yet, but going well. Hope yours does too, if that’s what you decide.

Did notice that wearing a scarf over the incision has made it tender from the scarf rubbing against it when I turn my head. At home I don’t wear anything, just when I’m outside or at work. It’s gotten pretty sensitive, so might have to come up with something else to cover it–some sort of non-adhesive dressing. At least no adhesive that sticks to the incision part.

I’ll stop by a drugstore today and see what they’ve got.

Amy

[amosmcd]

in reply to: My total thyroidectomy journal #1178822

Thanks, Kimberly!

It’s good to know about the half-life of T4. I never really thought about it before. I was on Levothyroxine before when I was hypo and just kind of went with the flow with my endo, not asking questions. Most likely because I felt so great after starting it. What’s to question?

Amy

[amosmcd]

in reply to: My total thyroidectomy journal #1178819

I did go back to work yesterday. I have the next 3 days off, so it was easy to just do the one day. My energy level was fine. Hardest thing was keeping my slippery scarf in place to hide my incision. It looks fine, but it’s pretty swollen, so it looks weird, especially when viewed from the side. It’s early days, so nothing time won’t cure. I deal with the public, so don’t want people staring at it. My voice was a little hoarse off and on, but it was the most talking I have done since surgery. I had sung in the car to the radio without thinking the day before, and I think it was too soon to try that. I don’t have a good voice, but like to sing.

I saw my endo on Tues and my surgeon Weds. Both were very pleased with how things went for me, the surgeon was very pleased with the incision and said I will have very little scar, as long as I keep it out of the sun. Next spring and summer I can get my neck tanned or even sunburned, but not this year.

The pathology report on my thyroid was normal, aside from inflammation from Graves’.

Here are my labs:

Pre-op on 4/12: TSH: 1.36 (0.34-5.60)
FT3: 3.3 (2.2-4.3)
FT4 0.63 (0.57-1.25)
I felt pretty good at those levels.

Post-op on 5/7: TSH: 0.75
FT3: 3.8
FT4: 0.90

These were drawn the same day I saw the endo, so I just got a phone call saying they were normal and to see her in 6 weeks for another lab check. This time I’ll get them ahead of the visit. I’m on 100mcg of Levothyroxine. I have to look at the labs in a whole different way, since they are not based on being on an ATD anymore. So have to wait for a pattern to emerge.

My heart rate goes up and down, so far no higher than 88, my heart will pound when it’s up high. I feel a little shaky inside and a bit anxious. I told the endo about my heart rate, but she’s not concerned. My brain is shot to heck right now. She said that’s normal, and I’ll start feeling better over the next few months.

Starting Monday, I’m to massage the incision a few times a day and use Mederma scar cream or gel to help minimize the scar. I don’t need to go back and see the surgeon until I have any problems with the incision or scar.

All in all, I’m glad I did the TT, the recovery time was minimal for me. Just have to wait for my body to adjust to not having a thyroid and recover from the long-term effects of my thyroid levels going up and down all the time. Hopefully, I will only need one adjustment (if I keep feeling a little hyper) to my meds and that’ll be it.

I saw in another thread about whether TT cures Graves’. I know my Graves’ is not cured, as long as my antibodies are high. A TT will not affect the antibodies, but will get rid of the hyperthyroid danger. Not going to worry about whether other auto-immune disorders will pop up in the future. I’ll get my TSI checked again maybe in 6 months, but it’s an expensive test. I have to pay $75 out of pocket after insurance every time I get it, which I’d rather not do often.

Well, I’m off to get a haircut, and then take one of my cats to the vet for her shots. I’ll check in with an update once a week or so.

Happy Mother’s Day to all the Mom’s out there!

Amy

[amosmcd]

in reply to: How do you stay calm? #1178951

Hi, Karen–

I’m sorry you’re going through this again! What is the surgery they are planning on doing, and what surgery did you have 2 years ago? Will they consider a hysterectomy to just rid you of your uterus since it’s causing all these problems?

As far as staying calm, when we were waiting to hear what was going on with my best friend this past fall, and cancer was one of the possibilities, I was freaking out with worry. I spoke with a co-worker who has been treated for a serious cancer with surgery, chemo, etc., about my fears, and she said she has learned to “just not go there.” In other words, do not let your mind dwell on something that has not been officially diagnosed. Every time my mind would drift in that direction, I literally told myself, “STOP!” and forced myself to think of something else. It turned out that my friend did not have cancer.

Worrying and getting frantic does not help you. It just adds so much anxiety to a situation where you need a clear head to help you deal with your treatment options.

I know you have a ton of stress in your life. When things feel wild and crazy, and totally out of control, find a way to distract yourself. And force your mind to stop thinking about it all the time. You do have more control over your emotions than you think.

Wishing you the best,
Amy

[amosmcd]

in reply to: My total thyroidectomy journal #1178817

Hi, Raspberry–

I was pretty much a couch potato until a year ago. My Graves’ symptoms first came on while a very close friend was hospitalized. He died 2-1/2 weeks later. I wasn’t officially diagnosed until last Sept. After my friend died, I started walking almost daily as a means to deal with the grief. Over time I walked farther and faster. I think the Graves’ has kept me from reaching my full walking potential. I can walk about 3-1/2 miles in anywhere from 52 minutes to an hour. I can’t run due to a bad back. I can’t seem to get any faster than that or go any farther. I think I’ve had some muscle wasting, but I lost 36lbs in 4 months due to Graves before it was diagnosed so it’s hard to say.

Right before my surgery I was walking 5 days a week, alternating a 2-mile walk one time with a 3 or 3-1/2 mile walk the next. Since surgery last Tuesday, I’ve gone on three 2-mile walks at about half my normal pace. I definitely feel being in shape has helped with the anxiety caused by Graves and given me a sense of control over my body. I think anyone with Graves’ who has been cleared by their endo to exercise should try it. It has so many benefits.

Hope this helps!
Amy

[amosmcd]

in reply to: My total thyroidectomy journal #1178815

Thanks, Kimberly and Karen!

Today I spent a few hours by a lake beach since we’re having hot weather. It was so nice to get out of the house and at least get my feet wet, since I couldn’t swim. I see my endo tomorrow afternoon and will get labs drawn. I see my surgeon Weds. I think I’ll go back to work on Thursday. I took off two weeks, but I don’t need it. I’d rather save my vacation days (which I’m into now) for actual vacation. I’m sure my surgeon will let me go back.

I did notice that after I ate dinner my heart rate went up and is staying up at 88 and is pounding. I think it did jump up last night, too, but not as high. U had Panda Express for dinner. No seafood, just chicken and beef. No MSG. I take my Levothyroxine at 6am, so it’s weird that it’s doing this in the evening. At least I’ll know soon whether the Levo dosage is causing it. I don’t feel bad, just a little uncomfortable.

Anyway, I’ll post my labs here when I get the results.

Amy

[amosmcd]

in reply to: My total thyroidectomy journal #1178812

Hi, Gabe–

I wish that everyone could have such an easy, uncomplicated TT as I’ve had! I’ve been very fortunate. No calcium issues, no voice issues. My energy is about 85-90% of normal, and it won’t be a week til Tuesday! I’ve gone for more brisk walks now and can easily do 2 miles. I try to get in 3 miles a couple times a week, but won’t til cleared by the surgeon. I drove today for the first time. Was able to use my mirrors and check my blind spots. My neck gets less sore and more flexible every day. I was supposed to be off work til the 13th, but Im Already going stir crazy at home, so I will probably ask to return this coming Thursday, the day after I see the surgeon.

My sterile-strips over my incision are not coming loose yet. There is one clear continuous suture that will be pulled in Weds. The hard part for me is loving to be out in the warm weather we’re having but I can’t expose the incision to the sun, so I have a lightweight polyester scarf I wear when outside. People look at me, and it does feel a little hot, but until it’s healed enough for sunscreen, that what I’ve got to do.

My heart rate sometimes races for no particular reason, but nothing uncomfortable. Probably just my body adjusting to the Levothyroxine.

I’m just so pleased with how it’s turned out. Hope my thyroid tests on Tuesday still look good. Oh, and swelling continues to go down. Pain around incision site is mostly gone.

Amy

[amosmcd]

in reply to: Beta Blockers and Exercise? #1178911

Hi, Sue–

I think calling your doc or even asking a pharmacist would ease your mind about exercising. I’ve only been on a beta blocker for a few days in a row a few times, but exercised while on it. I didn’t try anything new or more intense. But I’d been walking fast for exercise for 6 months before my diagnosis, and my endo cleared me to continue. I think exercise can really help with the anxiety and stress caused by Graves’. I’m recovering from my TT extremely well due in great part from being in good shape before surgery. I know that’s not possible for all Graves’ patients, but it’s worth trying if your doc clears you.

Good luck and keep us posted!

Amy

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