[ChristinaDe]

#1059668

Hi all! I have Grade I subclinical hyperthyroidism & “mild” Graves’ as well. While tapazole brought my TSH back to normal range & improved some of my overt symptoms, I still feel generally awful (tired, moody, weak muscles, light-headed at times, joint pain, blah!). I also have “mild” Graves’ eye disease. This is all strange to me, since my T3 & T4 have always been normal, and my low TSH has always remained detectable (usually between 0.25 & 0.35). That I have so many symptoms that do not feel “mild”, but am not overtly or even moderately hyperthyroid just seems counterintuitive. However, the TSH has been low for several years while we all “watched” it. Watched it do what…I’ll never know!!!

I’ve been told that RAI or thyroidectomy will relieve my symptoms, but I still don’t fully understand why. If my labs are now normal on tapazole & I still feel tired and moody & still have palpitations & feel a general sense of “blah”, then what will be different once my thyroid is out? We’ll use synthroid or whatever to keep my labs in that normal range. So what will be different? Why will I feel better? Will I??

Did anyone else have “mild” disease but moderate-severe symptoms, and then did TT? If so, did things improve for you? Did all those hyper symptoms eventually go their merry way?

I’m getting mine out this coming Friday, and am looking for some good news!
Something that there just hasn’t been enough of lately. Also, did anyone take potassium iodine pre-op? If so, did it make your heart beat harder?

Also, this last thing is going to sound like just one more of those “crazy Graves’ patient” things (which is totally how I feel I look to everyone!!)…but, today, while I was especially light-headed & my heart was beating at a nice regular 68, but HARD…and my BP was 104/90 & I was trying to stay calm even though I felt so very strange on the inside…I suddenly felt a weird pain on my knuckle. I look down at it & there is a very hard, very round, very raised bone-like protrusion the size of a pea. What the heck??? It sounds so stupid and small…but that nearly sent me over the edge. Another crazy symptom for a woman who already looks and sounds crazy enough. And I’m so worn out by everything that I don’t think it’s fair that I start with anything else new!

Ok, that last part was a bit of venting. But I’d really like to know if anyone has any experience with the mild version of Graves’ that exhibits symptoms similar to the more overt version – and then went on to have TT. Did it work for you?

Thanks.

[adenure]

#1176648

Hi!

I had a TT 7 months ago and I feel much, much better than I did when I was hyperthyroid with Graves. My T3 & T4 were too high and my TSH was .01 when I was hyperthyroid- although my endo. considered my Graves “mild”. That was probably true in comparison to others, but it didn’t feel mild to me! I lost 13 lbs. in a month, tremors, terrible insomnia (3 hours of sleep a night on average), heart rate around 100 (resting) 120 if I walked around, diarrhea, no appetite, terrible anxiety and fear- just bad all around. Methimazole got my levels normal and I felt better, but not great. I had to stop it though bc my live enzymes were 8 times the normal amount. 6 weeks later, I had a TT (that was 7 months ago). I’ve been on Synthroid since day 2 after surgery and am doing well. I was started on 100 mcg for 6 weeks, had labs done and was increased to 112 mcg and have been on that ever since. I’m doing well, my levels are stable, and I feel good! No, not pre- Graves super star great.- hee hee! — but, much better than before. All the above symptoms I mentioned are gone. I am able to lead a fairly normal, healthy, happy life with my family again.

I did take potassium iodine for 7 days pre- op. Nasty stuff, tasted bad- metallic taste in my mouth & in the toilet I don’t remember if it made my heart beat harder as my heart rate was already higher than normal at the time. I had to be off the ATD’s for the 6 weeks leading up to surgery bc of the liver issues I had on them. Fortunately, my levels stayed pretty stable during that time, but I started to get a slightly elevated heart rate and anxiety again a week before surgery- could’ve just been my worries over the surgery though!

In the end, I made the right choice. I am much healthier now than I was before. My favorite things that have disappeared are the anxiety & the insomnia. Heart rate is normal (65ish) and life is good. Again, not perfect- but on my good days (which are more often than not), I’d say I’m 90% my old self. I’ll take it. Hoping it’ll get even better as time goes on, but if it doesn’t, I will be okay as I am now.

[Kimberly]

#1176649

Hello – I can understand NOT wanting to deal with something new, but I would mention these latest symptoms to your doc. Worst case, it could lead to some additional testing…but *best* case, your doc might be able to help you get some relief!

Wishing you all the best as you make this difficult decision on your treatment options!

[ChristinaDe]

#1176650

Alexis ~ I am SO glad that you’ve stuck around on this forum despite doing so well! I remember seeing in a post from either Bobbi or Kimberly that most people on this site are either where I’m at (dazed, confused, & scared) or they’re people who are having a post-treatment issue. I think she said that most people come on after their diagnosis, stay through treatment, and then if they do well they tend to leave. So thanks for staying! Your pre-thyroidectomy story sounds very, very similar to mine…so hearing that you’re doing so well afterward is reassuring. I also am most bothered by the insomnia & anxiety. The racing heart is right up there too! I’m also glad that you mentioned getting to the correct med dose after only one change. It’s good to know that this truly is possible! I’ve worried (a lot!) whether anyone ever gets to the right dose very quickly. So with that…I think that now it’s time to enjoy my last few days before surgery and try to stop worrying. Time to kick some Graves’ butt!!

And yeah, the iodine is YUKKY tasting!!

Kimberly ~ I checked with the doc today about that added little newbie issue of the lump on my knuckle. Looks like it’s unrelated to the Graves’ stuff…a ganglion cyst. Will need to see an orthopedist after I’m feeling better from TT, but no emergency. Just another little nuisance thing – that hurts! Wonder if this has anything with the year? ’13! Hmmm…

Anyway, thanks for your responses!!

[adenure]

#1176651

I like to check in now and then. I remember how truly freaked out and scared I was- practically on the border of despair at times. I really questioned my sanity, my health, and doubted I’d ever be well again or able to care for my children which was THE WORST feeling in the world. I sat on the couch or in bed watching my husband and my mother in law care for my children, dance with my baby and I longed for that back. My heart rate would go to 120 just walking down the hall to the bathroom and I had panic attacks being alone with my kids or if I took a shower! I had my husband sit in the bathroom with me when I’d shower. The anxiety would make me light headed and I thought I would faint- so I worried about the baby bc of that. It truly, truly sucked. So, I figure, if I can give people in that situation hope that once our thyroid is under control, we get better again and become our old selves once more (at least pretty close to it), then I think it’s something I should do! The ONLY thing that is lacking for me right now is energy, but I DO have enough energy to homeschool my 3 older children and care for my baby everyday. I manage to workout 4-5 days a week for 30 min. of good cardio. I sleep at night (unless the baby wants to nurse, but then I can fall back to sleep pretty good). I get about 7 hours sleep a night- ahhh… yes, that is good!!! So, life DOES get back to normal.

Yes, I started on 100 mcg and then was bumped to 112 mcg. 2 weeks after the bump, my labs showed good numbers, but admittedly, it took 2 months on that dose to FEEL better. But, it did happen. I did still have lingering anxiety and insomnia and headaches for almost 4 months post surgery until my hormones were stable and level for 2 months- so, it takes time and requires some (a lot!) of patience. I will get some “anxiety breathing” when I don’t sleep enough (because I’m worried about something or another), but if I’m on my normal routine and life isn’t too crazy, I sleep good and I feel good.

[Bella1]

#1176652

ChristinaDe wrote:

.

I’m new to all this too, but I do remember a comment my endo made that would be relevant to your situation. He said that the severity of symptoms in hyperthyroidism are very often inverse to one’s actual thyroid levels. Some of the worst symptoms occur in patients with the lowest levels.

[Author]

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