[amosmcd]

in reply to: Another “Is this a symptom?” question #1178859

Hi, Sue–

I tend to be hypoglycemic, and my previous endo was the one I first went to see when I was tired of my blood sugar crashing every afternoon around 4 years ago or so. He told me to change the bagel I was eating for breakfast into something that had more protein and I also changed the afternoon snack I was eating to a low-glycemic energy bar.

Everything was good until I started on PTU after the holidays and I would have episodes of what felt like hypoglycemia. Feeling weak, shaky, but it never went into the absolute crashes I used to have where I would be sweaty and barely able to move unless I ate something sugary. I really don’t know why PTU would cause this, because I took the PTU twice a day, and these episodes only happened maybe once a week. Hopefully now that my thyroid is out they will stop for good, but I definitely feel like it’s related to something going on with my thyroid or as a result of the ATD for the thyroid.

Hope this helps!

Amy

[amosmcd]

in reply to: My total thyroidectomy journal #1178809

Hi, Karen–

Thanks for your nice post. I don’t consider myself an inspiration, just very lucky that my Graves’ symptoms never got too bad (aside from a couple bouts of bad anxiety.) I was also lucky to have my thyroid labs be at the perfect euthyroid level they needed to be right when I had my surgery, so hopefully that will prevent any wild swings while adjusting to levothyroxine. You are right that things have progressed with thyroid surgery–with all surgeries, I’m sure–since the 60’s. Techniques have been improved, and I think they try to be as minimally invasive as possible. My scar is about only about 2-1/2 inches long.

I found out last night from a cousin that heard about my surgery, that on her side of the family (her grandfather was my great-uncle) there have been many instances of thyroid cancer, mostly recently her mother and an 18 year old niece, who both needed thyroidectomyies and radiation therapy and are in remission. My cousin herself has been on Synthroid for almost 30 years and has a goiter and cysts. She gets a thyroid ultrasound every year.

I’m the only one of 4 siblings to have any autoimmune disorders, and I’ve had three. Go figure!

Today I stopped taking the narcotic pain med and switched back to the pain med I take for my back pain. I was able to eat pizza last night for dinner, small bites, well-chewed. My son drove me to the bank today and I went along when he went to pick up my other son from their dad’s, so I could get out of the house. Don’t have as much energy today as yesterday, but hopefully tomorrow I will.

The swelling in my neck is already going down. Still swollen around the incision. My neck only hurts when I lift my chin to look up. I also get this weird pain in my gums below my front bottom teeth and my lower lip feels numb at that time, too. It goes away when I take pain meds, but it’s annoying.

That’s all to report today. Slow and steady healing, feel neither hypo nor hyper. A good place to be.

Amy

[amosmcd]

in reply to: I feel like giving up #1178846

I’m so sorry you’re going through this, Karen. It does seem unreasonable to have to wait a week for results when they consider the bleeding to be abnormal.

I’m glad you’re getting another opinion. I think a hysterectomy would be a reasonable alternative to continued biopsies and surgeries. I think we women have to deal with uteruses far longer than we need them!!

Best wishes and hope you get an answer soon.

Take care,
Amy

[amosmcd]

in reply to: My total thyroidectomy journal #1178807

Glad to be of help! I have learned so much from everyone here, I have to try and help as well.

My surgeon’s nurse called and said my calcium level is normal and I can stop the Calcitriol (Vit D) but stay on the calcium pills til I go in for my post-op check next Weds. I felt good enough this afternoon to go for a 1 mile stroll with my son. I usually walk close to 3 miles at a fast pace and this was not that! It felt great to breathe in the fresh air and stretch my legs. My neck is much less painful this evening. The weather here in Seattle is supposed to be 80 this weekend. We wait a long time for warm weather, so I’ll be so happy to sit outside and soak it up!

Have only iced my neck once today. The swelling is not bad and I’ve spent all day sitting or laying upright in my recliner. So I may stop it, since it chills me.
Still eating soft food, but only because my neck muscles still hurt if I have to swallow hard.

Also, thought I’d mention that I have had a little problem with constipation due to the pain meds, but started taking stool softeners yesterday and it’s helping. I tend to have that problem anyway, even when I was hyper, so it’s something to be vigilant about when on narcotics.

Oh, I forgot to mention that one of the problems you can have right after surgery is that you feel there is phlegm right at the base if your throat you want to cough up, but it hurts to and it almost feels like those cough muscles are unable to move. The phlegm is caused by sinus drainage that wasn’t able to drain when they have your head tilted back during surgery. Yesterday afternoon I started feeling like I could cough without too much discomfort, and today it’s no problem.

I’ll check in again tomorrow.

Amy

[amosmcd]

in reply to: Made decision for surgery #1178447

Today was a busy day–lots of medical appointments prior to my TT next Tuesday!

First appt was with the nurse at the surgeon’s office, to go over the consent, the preparation starting the day before surgery, where to go, etc. That was easy, and everything was written down so I don’t have to rely on my sketchy memory!

Right after that was the appt with my endo. She apologized profusely for the miscommunication with me having to wait a week to talk to her. She had two office people from a different clinic helping out and they didn’t know the proper procedure. She said I should always expect at least the nurse to call me back, and that I should have been given an appt much sooner to go over all the questions with her prior to deciding on surgery. It was a relief to hear that.

I got all my newest questions answered today, and she was very pleased that my labs are “perfect.” She said the surgeon was really pleased at my labs because it makes the surgery much less complicated. Plus I think it makes the post-op period easier. It’s probably one of the few times since September that my labs have been good. I’ll get them checked again in the hospital, too. She is going to start me on 100mcg of levothyroxine and see how I do on that. She’ll see me 1 week post-op. She’ll have me get my labs checked once a month until I reach the “sweet spot.” I’m hoping to have a little more energy than I do now.

The last appt was for a pre-op thyroid ultrasound, which was normal. Too bad ultrasounds don’t show the havoc being wreaked inside the darn thyroid!! But it’ll be a safer surgery without any goiter. When I was first diagnosed I had a small goiter, but it must have gone away.

All to do now is for the hospital to call me with pre-registration questions and info tomorrow and for the surgeon’s office to call me Friday with what time to be at the hospital on Tuesday. My brother will drive me there and one of my son’s will pick me up. My son will also be the one helping me out at home. He’s 22, so should be able to handle it. Hopefully, I’ll be able to drive not too long afterwards and can do most things myself. But I will let myself be pampered, too. As much as a 22 year old can pamper his Mom!

I’ll start a new thread once I’ve had surgery.

Amy

[amosmcd]

in reply to: Well, here goes! #1173613

I’m so sorry the RAI was a dud for you. You’ve been incredibly patient trying to wait it out. It is good news about medical coverage, though! That will take a lot of stress out of the picture.

Hang in there. Hope you get some relief on the increased dose of Methimazole soon.

Amy

[amosmcd]

in reply to: Feeling depressed #1178614

I switched endo’s in the middle of March, after a three-month wait to see the new one. I decided to switch when my first endo would not give me the name of a thyroid surgeon, when I was dead-set against RAI.

There are many others on the forum who have switched endo’s. It may be that if you have to wait a long time to get into a new one, you might be able to have your care taken over by your primary care doctor, if they are willing to do that. If you aren’t happy with your current endo, that would be the first doctor to call. My primary care doc was the one who referred me to the new endo.

I’m glad things are not as bad as it seemed with your husband! I know guys want to fix things and can feel helpless when they can’t and can end up saying the wrong thing.

Keep it touch and let us know what happens.

Amy

[amosmcd]

in reply to: Feeling depressed #1178609

I had the same reaction to Methimazole that you are having with PTU. I felt horrible from day one, with the exact symptoms you are feeling. It worked really well, but I felt like life was not worth living the longer I was on it! I was on it for 5 weeks and finally told my endo I could not stand it any more, so he switched me to PTU, which I’ve been able to tolerate, but I tend to go either hypo or hyper on it, so I’m having a TT on the 30th. I am so sorry you are stuck without an option for switching to another med now.

We need treatment, but sometimes the treatment is worse than the disease! It’s possible that you may need to decide on RAI or total thyroidectomy to control the Graves’, if you are unable to tolerate anti-thyroid medication. Definitely contact your doc asap to find out what can be done to make you feel better.

As far as your husband–he needs to understand that the medication is making you feel this way. It’s not something that you can control. You can’t snap out of something that is being caused by your meds and you can’t just stop the meds cold turkey.

I’m divorced, but my young adult boys live with me and they were able to understand this. I had a bad reaction to prednisone when they were a lot younger and they were able to understand it was the medication, not me. Even if your kids are too young to truly understand, your husband should provide an example to them of compassion and patience while you go through this.

I hope the links Kimberly provided help him understand. Graves’ is a serious illness, and unfortunately, until you find a treatment that you can tolerate, life can be crappy for you and those around you. I wish you the best!

Take care,
Amy

[amosmcd]

in reply to: symptoms with normal bloods – maybe this will be useful for anyone else in the same situation #1178540

Hi, Beauty–

I just got my labs back yesterday after a month on a lowered dose of PTU. My endo’s office left a message that my labs were “perfect”. So I had to call back and ask what they were.

Last week I had an episode of a heart rate of 116 for which I had to take a beta blocker. I was having heart palpitations, and feeling very anxious.

I also ended up waiting a week to speak to the endo herself about questions I had regarding my upcoming TT. I had to let work know if I was going to take time off, I had to know if I actually was going to have surgery (the decision wasn’t final on my part yet) and so was under pressure to speak to her before my next appt, which isn’t until a week before surgery, so I was definitely feeling anxious. She seemed to think that all this was due to a psychiatric anxiety episode rather than a Graves’ anxiety episode. I’m not normally a super anxious person, but since Graves have become more anxious overall. She wanted to make sure I knew that having my thyroid removed wouldn’t remove “other issues” I might be having. So basically saying I was a psych case. I’m sure my having normal labs this time has just just cemented her view. But my labs since diagnosis have been all over the place.

You’d think endo’s would know better, and I’m going to discuss this more in detail with her at my appt. Endo’s should be more supportive and definitely not send people to psychiatrists without considering all the possible other reasons for how we feel. She hasn’t referred me to one, but it’s insulting that she thinks I’m anxious due to mental issues rather than just being stressed out about TT and her not returning my calls for a week!

Anyway, it’s certainly disheartening to be treated like that! I hope things get better for you since your conversation with the endo.

Take care,
Amy

[amosmcd]

in reply to: Started my RAI today. #1178498

Hope things continue to go smoothly for you!

Amy

[amosmcd]

in reply to: Never Rains, but it pours! #1178514

Hi, Karen–

I thought I was menopausal after 14 months with no period, and then at the end of December I had a normal period. I was really hacked off, thought I was done with it all! I figured it was the Graves’ messing with my hormones. I haven’t had one since and my FSH levels always say “menopausal.” When I saw a new primary care doc she recommended an ultrasound, but I haven’t gotten around to it yet. At least I’m getting a mammogram this week! She said once you’re menopausal, any bleeding is considered abnormal, but it also doesn’t mean anything is seriously wrong.

Hopefully your ultrasound will show nothing serious at all and this is just a cruel joke on the part of Mother Nature. Thinking positive thoughts for you!

Take care,
Amy

[amosmcd]

in reply to: Made decision for surgery #1178445

Hi, Susan–

Since I work at the hospital where I’ll be having surgery (but not in the same area where I’ll recover) I am lucky enough to know the hours they serve food and what they serve. My surgery is early enough in the day that I’ll have plenty of time to order something, if I feel like eating.

I was pretty nauseated after my sinus surgery, so don’t know if I’ll feel like eating much. I’ll keep it light just in case. And I’ll drink slowly and carefully! All good stuff to know, thank you!

Amy

[amosmcd]

in reply to: Made decision for surgery #1178443

Thanks for the info, Alexis! I’ve got a recliner I can sleep in. I slept in it after my sinus surgery, too. Can’t sleep on 2 pillows because of a bad neck, so will just stay in the recliner til I can sleep flat. It sounds like they will send me home on Calcitriol and calcium. I’ll start the Calcitriol with a dose a week before surgery.

I’ll be careful with swallowing. Sounds like slow is the speed for everything post-op, which is good! Thanks again!

Amy

[amosmcd]

in reply to: Made decision for surgery #1178441

Hi, Alexis–

It’s a small surgical world, isn’t it?

Just wish it was this Tuesday and not the 20th. But it’ll come soon enough. This gives me time to plan out my time off. One of my sons can shop and cook for me, since he lives at home still, and my brother will take me to and from the hospital and also check up on me.

Any recommendations for what to eat/drink once I get home?

Amy

[amosmcd]

in reply to: Made decision for surgery #1178440

Thanks, Rob!

I’m keeping positive thoughts about the whole thing. I appreciate your support!

Amy

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