[scanders July 31, 2014 at 3:50 am Post count: 108]

#1173707

Awesome and inspiring! I’ve only been on this journey less than a year, but I’ve felt more than once that I’m being asked to “settle” for feeling less than my best. It’s very motivating to hear the success stories here and be reminded that I don’t have to “settle”. I just have to be patient until we find the right answer to get to my best place. Thanks for sharing!

[joansnance August 10, 2014 at 11:12 am Post count: 5]

#1173708

Hi,

I have enjoyed reading your post today and all the wondeful replies. Even though I’m more that twice your age, your story is soo similar to my early experiences with Graves. I always was a typical type A personality with tons of energy before, but after Graves, talk about HYPER! I saw myself as a gerbil running on one of those wheels…couldn’t stop going but at the same time unable to get things done properly. I had a head full of thick, curly red hair which fell out by the brushfulls in my bathroom. Of course, I won’t ever forget that nightmare but things totally turned around after RAI. I don’t recall having any trouble with weight gain. I didn’t get any iodine colored polka dots after the treatment either!
Seriously, I have had no problems that I am aware of from RAI after all these years. I had no problem getting my synthroid regulated. I try very hard to keep my thinking in the “positive.” I envision that you are going to do just fine! I will pray for you!

Joan

[Raspberry August 13, 2014 at 12:44 am Post count: 273]

#1173709

Congratulations to you AZGravesGuy! It is so wonderful to here there is light at the end of this tunnel. I’m still fighting with the medication but your message is most definitely heard. How have your eye symptoms reacted after your TT?

[JEH August 27, 2014 at 7:21 am Post count: 33]

#1173710

After only sleeping 4 hrs last night, I finally got up around 6 am and logged on. I read through the entire 25 pgs of your journey. I was diagnosed in 1998 and mine has been a lot less wild than yours. But I still suffer (like not sleeping last night). I was off meds for nearly 8 yrs and vital signs were stable, but weight gain, heat intolerance and sleep disturbance finally sent me back to doc earlier this month. I am hypo now and on low dose T4. Labs in 6 wks to see how this is all going.

My doc is in San Francisco and has been doing thyroids for over 40 yrs. He detected TED in me on my first visit in 1998 and advised against RAI in favor of meds. However, he said if he had Graves he would find the best thyroid cancer surgeon he could and have every bit of thyroid tissue excised. From reading your story, it sounds to me like he’s right about what is the best treatment for this condition. Congratulations.

[AzGravesGuy October 31, 2014 at 6:33 am Post count: 160]

#1173711

Happy Halloween everyone!

I fell into a bit of the hypo a few weeks ago and I now take 137mcg on Mondays and Fridays, 125mcg all other days.

So far so good!

No major freak outs.

My TED is currently frozen in time. I still have the bulge but my eyes haven’t ached or gotten worse since surgery. Since I hit 40 last month I have noticed a slight change in my vision. My dr said it didn’t sound like TED, she said “welcome to 40” instead.

Ha! I just lost the second half of my post! Lol

[AzGravesGuy October 31, 2014 at 6:37 am Post count: 160]

#1173712

I am almost back to my pre-Graves weight. Endurance, strength, and clarity are all back to normal.

My hair is thin but I never had high hopes for it. I am destined to go bald no matter what I do. ( Thanks Rogaine, you fought the good fight but genetics won. Lol! )

Occasional anxiety for the last month. I assume it is because I wavered a little out of theraputic range.

No matter. I still feel better than I have in 9 years. A TT was the best thing that ever happened to me. Weird to say that but it’s true.

My experience is not over, it never will be, but the “fun stuff” has died down a lot.

If my posts get really infrequent, it is because life as I knew it is back. I will make the effort to check in occasionally.

I want everyone on this board to have their lives back. Grave’s didn’t destroy us overnight. We can’t heal from it physically or emotionally without perseverence and patience.

Make no mistake, it can be done.

It CAN be done.

Thank you everyone for following my thread, my experience, my journey.

I think this officially closes the “Well, Here Goes” chapter. The hard part is over and I cannot thank everyone here on this board enough for providing an ear, comfort, and hope. Without the shared experiences on the GDATF forum, I would never have found the knowledge or courage to continue forward.

Everyone deserves to feel well. Everyone deserves proper medical care.

Don’t ever stop fighting for what you deserve. Don’t stop fighting until you feel whole.

[KimberlyOnline Facilitator October 31, 2014 at 10:15 am Post count: 4294]

#1173713

@AZGravesGuy – Huge thanks for the update and for the kind words about the forum! Thanks also for sharing your loooong journey with the rest of the Graves’ community. I know that reading your story has given many others comfort and inspiration!

And congrats on getting close to your pre-Graves’ weight…that is a huge battle for many of us. And one that I seem to be losing at the moment.

[SueAndHerZoo October 31, 2014 at 11:03 am Post count: 439]

#1173714

Yes, thank you for the update! I am 15 months post TT and still haven’t found the sweet spot of Levothyroxine dosage yet, but we’ll get there. I keep making the changes in tiny increments so it’s probably taking longer than it needed to, but I experience side affects every time we change doses so I like to do it slowly and minimally.

Your post was perfect – so encouraging and upbeat and true on every count. I had no idea how long my Graves was making me miserable until I had my thyroid removed. Anything I go through now is minimal compared to what I lived with for years.

Keep up the good battle, and the good attitude, and please check in once in a while and I’ll try to do the same.
Sue

[snelsen October 31, 2014 at 9:21 pm Post count: 1909]

#1173715

Oh gosh, Az. Gravesguy!
How nice to hear from you!!
What a wonderful person you are!
You have been down a long road, as we all have!
Thank you so much for writing again! i feel like I kNOW YOU!
SOOO TIRED TONIGHT, so going to bed at 9:30 west coast time.
Do check in now and then. Because you can continue to help others, after all that you have experienced. You are a great “give-backer!”
Don’t ever get TED!
I will see that you don’t!
Shirley

[AzGravesGuy June 8, 2015 at 2:57 pm Post count: 160]

#1173716

Hey everyone! Who wants an update?

Life is going on!

I feel really good…which makes the following difficult to interpret:

April I started to get some heat across my shoulders and I had an anxiety moment….the first in many months.

“i’m on too much synthroid” I thought.
This is the same feeling from the hyper days.
I have lost a large amount of weight (over 70lbs) since surgery and no, I haven’t been really good about bloodwork. I feel good, why bother. I’m busy.

Huuuuge mistake apparently.

I reduced my dose to 125mcg daily from the rotation of 125’s and 137’s. I felt better after a few weeks. I continued to lose weight. My levels then:

4/25/15 fT4 1.58H (.59-1.17), TSH 4.05 (.34-4.82)

A week ago I woke up in a sweat. Familiar territory. I called my dr, he said time for 112’s, but lets see the bloodwork first.

6/1/15 fT4 9.1H (.59-1.17), TSH 19.6 (.34-4.82)

The dr just called me and said stop the 125’s all together and do 112’s for 6 weeks then recheck. He sounded worried.

Can anyone see a reason I should suspect this is anything more than an overmedication of Synthroid?

My heart is slow and steady. Slight tremor on the left hand is back when held out infront of me.

Part of me is really upset because I feel good. Another part of me says see….ur worried and anxious about it so you MUST be on too much. That is your silent symptom!

I am back to weighing a little less than I was before Graves’ struck. The difference is I have much less body fat than before. (Exercise is fun when you feel good and I have been working hard all winter to lose the old look. )

What kind of doses are people on? I found an online calculator that said I should be on 118mcg..(125mcg and 112 mcg rotation) Obviously that is too much for me.

This high TSH has me really scratching my head because I would have expected it to be the exact opposite.

Other than this lab issue…I have nothing to complain about….I know….imagine me saying that 2 years ago……lolololol

[KimberlyOnline Facilitator June 8, 2015 at 4:55 pm Post count: 4294]

#1173717

That’s great news that you are feeling well, but sorry for this new frustration! I’m sure that others who are on replacement hormone will chime in.

Hopefully, this dose tweak will do the trick, but if it doesn’t, a couple of thoughts would be to check T3 to see where that is, and also to consider pituitary issues.

Wishing you all the best!

[AzGravesGuy June 9, 2015 at 4:26 am Post count: 160]

#1173718

Thanks Kimberly, I am getting bloods redone this week….the full panel, not the cheezeball panel he usually orders.

I have been looking at the last month trying to make sense of the tsh increase…I think I have an answer.

I started a new protein supplement that is verrrrrry soy in the first week of May. It isn’t the only protein I use but since it is a new addition it was overused this past month.

No more soy! Lol

[Liz1967 June 9, 2015 at 10:01 am Post count: 305]

#1173719

Interesting about the soy. I finally read the Synthroid insert which warns against eating cottonseed meal, infant soy formula, high fiber and, of all things, walnuts! This is separate from the warning to wait 4 hours before calcium, antacids, etc. Even my endo was unaware of the walnut thing. Interferes with absorption. Coffee will do it too, even if you wait an hour. Trick with coffee is to be consistent so your levels remain stable. I stopped coffee for a few months and it messed up my levels. Hope you get it figured out.

[genuinruby June 10, 2015 at 10:52 am Post count: 92]

#1173720

Just “Chiming in” – I too, have had several dosage changes since the TT in 2010.
In fact, things have been going well “lab test-wise” for awhile on the Synthroid 125’s – or so I thought, until I got labs done last month. My TSH was in range at 0.822 – which for me, feels too low. That’s when I realized I had been grinding my teeth ( in the daytime!) and my heart had been racing now and then, also climbing the stairs was leaving me winded. All symptoms reminiscent of pre -TT days. I did not complain to my doctor, as she thought my “levels” were great, but I did start cutting a pill in half for my Sunday dose, and a month later, all is back to NORMAL. I suspect, that diet can affect how our medications do their job.

Interesting to learn about the walnuts, I did not know. I have learned to read the labels on everything unfamiliar, as even natural stimulants can keep me awake all night.

[snelsen June 10, 2015 at 8:32 pm Post count: 1909]

#1173721

What FUN! AzGuy has resurrected some of us old timers!! Hi, nice to hear from you genuineruby!

I have found that the best thing for me is to be consistent, with whatever I do with food. Coffee is my best example. I nave consistently never waited any amount of time for my coffee. I did not know, or think about walnuts,either. But I think it is years since I have eaten them.

My biggest issue is continuing to remain slightly hyper by labs, but feeling hypo, most especially tired and much fatigue. But this is hard to separate from the factor of getting older…and older…and older. If I had not developed atrial fib a couple years, ago, I would definitely take more Synthroid..as it is, I take 100mcg 6 days/week, 112mcg one day a week.

Graves’ (and TED) changes our life for the rest of your lives, that is for sure.
Shirley

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