[Gabe]

in reply to: Joint and muscle pain/weakness on ATD #1180626

Hi Flora. Good to hear from you. I remember having those symptoms (not as bad as you) and if I remember correct, they are also side effects from the ATD meds. That was one of the reasons I was desperate to get off the meds. I felt so weak. Unfortunately I didn’t have the patience to soldier thru it. Hopefully once you find your ideal dose these symptoms will subside and you can begin strengthening your dancing muscles! I know there are many folks on this forum that treat long term with ATDs so hopefully they can give your some answers.

Best wishes, karen

[Gabe]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179647

9 weeks update:

Labs say I’m still hypo. TSH is 7.1, T’s are within range (can’t remember numbers). Endo upped Levo to 125 mcgs so we’ll see what that does in another 6 weeks.

Generally feel relatively good…physically. I still need a Xanex to sleep however tried a few nights without it just to test to see my dependency and it was fine. Afraid of becoming dependent so will watch carefully. My energy levels are pretty good. Surgical site is well healed…a few strange twinges now and then and scar is barely noticeable.

TED is big issue. Prisms were increased again and my 4 week check with strabismus specialist is August 15. I’m hoping to hear that there is no change. but something tells me the double vision is a little worse. Anxious for this to stabilize so I can be considered ‘inactive’. But hear it can go on for years. Ugh.

Most disturbing is the emotional, mental swings. I’m still having bouts of crying, mood swings, and probably depression. But they also come and go. Not always present and not predictable at all. This past weekend I cried at everything and for very silly reasons. Can be embarrassing around others when you just can’t explain what’s wrong.

Have experienced some weight gain. Maybe 5 pounds but not overly concerned. I’ll deal with that after everything else.

Oh yeah,,almost forgot…developed a lovely case of shingles on right side of back and stomach. Just something to add to the fun. Finished the antivirals so hoping the uncomfortable (and sometimes painful) sensations go away soon!

A good thing…right after surgery and when I was very hyPO the night time hot flashes were terrible. They have subsided considerably. Something to be thankful for.

I joined the Deepak Chopra and Oprah Winfrey free 21-day Miraculous Relationships Meditation challenge that started yesterday (8/5). Can’t hurt and maybe can provide some calm to my crazy thoughts!

Much thanks to everyone on this forum. Without you I would feel very lost and lonely!

Karen

[Gabe]

in reply to: Hello again, and another post-TT update #1180516

Hi Amy. I’m not a doc (obviously!) but 50 mcgs of Levo sounds very low. I went from 50 (TSH at 25) up to 100 (TSH at 7) and was just upped yesterday to 125 since I’m still not within ideal TSH range. My FT4 and FT3 were within range. And even while hypo these last 9 weeks I can still feel some heart palpitations…nothing like what you have. So I agree that you can still have heart symptoms while hypo. Better safe than sorry so a cardiac checkup may put your mind at ease. I personally think you’re still hypO. I’ve not heard of anyone post TT that’s on such a low dose.

Will be curious what your labs say. It’s heartbreaking that we all walk around with these feelings, anguishes, symptoms, and anxiety and just cannot get anyone to truly understand how helpless and frustrating this is almost daily. Damn and double damn. (PS. I have much stronger words in my vocabulary that I would prefer to use but would probably offend some and get chastised for inappropriate forum behavior! Haha)

Hugs to you,

Karen

[Gabe]

in reply to: Had a TT last Monday. (Graves’, TED, Hashimoto) #1180623

Hi Amanda,,, welcome…glad you took time to put all this down and join us. This forum has been very helpful to many of us, whether we choose TT (like me) or RAI, or meds. This is a very chronic, complex disease that for many folks is a breeze and for others (usually those of us who post!), we’re in the small percentage of people who don’t regulate well, get TED, struggle with flutuations, and are generally snake-bit!

Just a heads up that it may take you more than 6-8 weeks to feel different, normal, well. It depends how quickly your ideal dosage is found, how strong your antibodies were/are, and probably dozens of other factors that are unique to each of us.

I also have TED that got worse after my TT, probably because my antibodies were raging and the TT/timing were just a coincidence. The TED is THE most disturbing thing about Graves’. The double vision, swelling, tearing are frustrating and impact so much of general daytoday life.

I hope you breeeze thru this, find your magic dose quickly, and that your TED resolves without getting worse…

Welcome! Karen

[Gabe]

in reply to: Hello again, and another post-TT update #1180512

Hi Amy,,, hope you get some answers… it is strange that your having these extreme reactions. Our bodies are a mess. Please share what your endo recommends. I’m very curious since I just got my 9 week labs and I’m looking forward to what’s next. Had a little backslide this weekend myself and not sure what the heck caued me to be a crying basketcase. Weird.
I hope you get some relief real soon! Karen

[Gabe]

in reply to: Hello again, and another post-TT update #1180507

Hi Amy. So sorry you’re still struggling. Good and bad news from your doctor….darn. I agree with Sue about T3….my endo is against introducing this too soon after TT but is willing to try after getting to the right T4 (synthroid) dose. I made him add T3 check to my labs because if I am not feeling really good at 6 months I want to know if my body is properly converting T3 so then a decision can be made about supplementing with T3.

This sucks for you. I’m so sorry….. Karen

[Gabe]

in reply to: Hypo and worsening TED symptoms #1180608

Hi all, this thread has been very informative. I’m post TT hypO and my TED has gotten worse…swollen eyes, proptosis, and double vision. I thought TED was more related to the antibody levels but this may explain why my TED got worse when I went hypo. Just got my levels checked after my synthroid was doubled to 100 mcg. I’ll be watching this carefully. Doing my best to avoid surgery but this double vision is life altering, scary, and disturbing.

Thanks! Karen

[Gabe]

in reply to: Shingles now, what’s next… #1180547

Hi Amy. I’m hoping I got on the antivirals soon enough. They are uncomfortable and at times painful, but manageable. Worst time is middle of night…of course another thing to ruin my already ruined sleep! Thanks for the good thoughts. Another blip on the radar screen of life!

Take care, Karen

[Gabe]

in reply to: Sue’s TT – July 16, 2013 #1180380

I’ll play doctor for you tonight. Miss Sue, this is normal. Your body has just been thru a major surgery. You have stored hormone and artificial hormone colliding. It will work its way out with time and patience. So relax. Stop over analyzing. Watch a good movie or read a book or do a project. This too shall pass! Signed… Your fake “Dr.” Karen.

[Gabe]

in reply to: Safe to take Beta Blocker & Tranq after TT? #1180580

I hope the tranquilizer helped… Not having a thyroid shouldn’t affect whether you take a beta blocker…something has your heart rate up and they help lower it to protect your heart. I hope you’re feeling better.

PS. I’m not a doc…just my opinion.

I had a few days of raised heart rate after TT. I almost took a BB but just rode it out. Told myself if it got higher or lasted longer I would take one and call my doc.

[Gabe]

in reply to: Sue’s TT – July 16, 2013 #1180378

Hi Sue. I didn’t/dont have that kind of anxiety. Just some days of feeling a little unsettled and anxious. But I know you’ve battled that all your life so I don’t want to minimize how real it is for you. A disruption in your sleep pattern along with the bad dream probably don’t help. Hope your day got better and if not maybe tomorrow will be better….happy dreams tonight!

Karen

[Gabe]

in reply to: TT 8/8 #1180557

Best wishes Laurel! many of us felt that same way just before TT… feeling pretty darn good, chores done, a little nervous and ready to bring it on (or should I say take it out!). Remember to take it easy after your surgery…you’ll feel very good, however, your body has just gone thru a major event and needs time to recover. If you overdue it, you will crash. It’s a process…

Wishing you the best….

Karen

[Gabe]

in reply to: TT scheduled for mid-August… #1180550

Hi JCC. Welcome to the best place to find answers, vent, get educated, and unfortunately still have more questions! We’re all real patients with a variety of symptoms and no two of us have experienced Graves’ the same way. I’m not sure I followed this in your post, but how did they actually diagnose your Graves’ back in 2005? Have you ever had your antibodies checked (TSI or TRab)? Did you have an ultrasound or uptake scan. Especially since your TSH, T4/T3 levels are reading so close to normal.

Even with all that you do seem like you have most of the classic Graves’ symptoms. There are a few of us who have recently gone thru a TT (myself, SueandherZoo, Talley, Amy, etc.)…and Shirley is the veteran TTer (50 years ago!). Please read a few of these journals for details.

I can’t answer your weight concerns and, as Kimberly stated, everyone experiences weight gain/loss differently. Once you have your thyroid removed you almost certainly will go hypO for a period of time…the length of which depends on your body, the synthroid/levothyroxine dose you start with, and how quickly doctor catches it (via blood work). Other than your concern about weight, I think you’lll find that the vast majority (however not all) of us who have gone the TT route are pleased with the outcome (so far). All of us had doubts, second guesses, third guesses as to whether it was the right decision. You will have the same conversations over and over with yourself. I found the best thing to do was write down everything, keep a journal, and make sure I found a surgeon that answered all my 64,000 questions and that I felt comfortable with. After that it became easier to make the final decision to move forward with the TT.

I wish you the best….stick around this forum…it’s a big help whichever path you take! Karen

[Gabe]

in reply to: Strabismus surgery experiences #1180491

Wow Joseimadera… you’ve had a rough go of it. I hope you get some relief. I don’t have half the issues that you have and it’s already making me crazy. Right now I’m typing this with my chin up in the air and my head tilted to the left because the prisms in my glasses don’t work all the time. Some days worse than others.

It sounds like Shirley is a good one to talk with about Strabismus surgery and hopefully others will chime in. I can certainly say that I would be anxious about being awakened during surgery while the doc is stitching my eyes… holy moly.

I really hope you get some help and relief from your eye issues. This eye stuff is very scary…worse than the hyper symptoms by far…

Best wishes,,, Karen

[Gabe]

in reply to: Shingles now, what’s next… #1180543

Thanks Sue/Shirley… it’s confirmed it is Shingles…I’m thinking, what next…grow a tail! Jeez… enough already. Took the antivirals right away (biggest darn pills I’ve every seen) so now just hoping it doesn’t progress to the bad stuff (neuralgia, etc). Pharmacist and doctor were not concerned about thyroid stuff. So now a waiting game. Today the blisters have spread and the pain in a little more intense than yesterday but very manageable… if only I didn’t have to wear clothes!

Since I have TED I’m super anxious about this virus getting into my already-messed-up eyes. Since I’ve probably been contagious a while before the rash showed up, I sure hope with all my fingers in my eyes I didn’t transmit it. I’m assuming I will know if that happens because I hear it’s the most serious place to get shingles and is an emergency.

Appreciate the responses….Karen

[Author]

Posts