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in reply to: Well, here goes! #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
in reply to: Well, here goes! #1173716Hey 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
in reply to: Well, here goes! #1173712I 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.
in reply to: Well, here goes! #1173711Happy 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
in reply to: Graves disease and surgery #1183197The risk of having interoperative hypotension doubles with hypothyroidism.
http://www.ncbi.nlm.nih.gov/pubmed/6465175
That is disappointing that she might have to wait for surgery, but the delay is reasonable for her own safety.
Keep us posted!
in reply to: First time posting #1183020Lwilliamson wrote:Sometimes she feels like she is dying, and is so scared about this. Fear of brain damage.This anxiety is normal. It can be very hard to break through it. What worked for me was meditating. I still do it every day and cannot say enough good things about it.
I remember it was very difficult when I first started to get my mind to focus through the anxiety but eventually it does happen. There are many free apps and mp3’s of guided meditations out there. Teaching yourself to breathe deep and slow on command can help shut down anxiety as soon as it starts.
Most of what has happened to your daughter will be erased with recovery. Her personality will come back, as will the hair, skin, and nails. It will take time however. The trick is remaining calm until the meds do their thing.
My best advice to you as a caretaker, advocate, parent, and friend is to learn as much as you can and never let you daughter lose faith that she will feel better. It takes patience but it will happen.
in reply to: First Time Posting-Happy Wednesday Everyone! #1183039Hi Julie! Welcome to the forum!
Your empowerment to feel better starts now. You are amongst friends and we are all in different places on the same road.
All the symptoms you listed are classic thyroid symptoms. As Ellen said, the meds will take a while to start to work, but every day on them is a day closer to normal. Don’t lose that focus. (Some beta blockers are fast acting and can give you relief from that pounding heart the first day. Ask your doctor. )
Do not be afraid to demand better care. From this point forward you are your own health care advocate. It sounds like you finally have a good doctor and I hope you see improvement soon. You can and will feel normal again.
Keep a symptom diary and get copies of all of your lab results. Note your symptoms at those levels and at each test thereafter. This information is critical when talking to your dr.
Do not be afraid to ask questions. No question is too stupid. Do not be afraid to ask your doctor about any new symptom or change in an existing symptom, no matter how slight or uneventful.
Whatever treatment plan you choose I wish you the best of luck in your experience. If you ever need someone to listen, we are here for you.
in reply to: Well, here goes! #11737046 month post TT update:
Currently stable on 125 of Synthroid.
I have my life back.
100%.
I forgot what it feels like to feel well. Seriously. I was not prepared for this. The limits Graves’ forced me to accept before are gone. I CAN lose weight. I CAN build muscle. I CAN have endurance. I CAN conquer anxiety!
I thought I felt good when I posted last time in April, but no. Not after what I experienced a few days ago. Now I know what good feels like.
Last week I couldn’t sit still so I went for a hike, something I have not done in a long time. It was going to be 107 that day so I had little hope of successfully reaching the top of the trail. It didn’t matter, I had to get outside. A treadmill was not going to cut it that day.
It was early and I didn’t even notice where I was until I was halfway up the trail. I wasn’t weak like I was last year, not able to make it past that point before. Now, I barely blinked.
I made it to the top. It was a struggle the last quarter of the way (super steep) but there I was…watching the sun rise over the brown cloud from a hill top.
Tears welled in my eyes. At that moment I saw nothing but a future of possibilities again….and that the brown cloud was now surrounding the mountain.
That mindset, that moment: The Ultimate Middle Finger To Graves’ Disease.
Everyone deserves that moment of freedom from the hell of Graves’, minus the smog.
If you are new to this and afraid, don’t be afraid and do not delay treatment. Do your research, pick a path and go. Do not wait so long you forget what healthy feels like. The years I wasted on the fence about taking a step beyond methimazole….years I lost feeling crappy and just accepting it….I wish I could go back in time and kick myself.
But I can’t.
Kicking myself now has proven ineffective at best.
Having this surgery was a game changer. Before I couldn’t keep up, now things move out of my way.
Veloracer, jwixom Welcome to the forum! There is a wealth of knowledge and good people here. Thank you for your support and for sharing in my experience.
Sara and Sue I hope you 2 are still doing fantastic!
Shirley and Kimberly, thank you as always for following along and being here for all of us.
I am not out to conquer the world, just my past.
in reply to: RAI vs Surgery #1182894I have had both and without hesitation I would recommend the TT.
My RAI left me waiting and wondering. I felt better the moment I woke up from surgery.
Everyone has a different experience and both treatments have fans, but if you want the madness to stop sooner than later, nothing is faster than surgery.
in reply to: Well, here goes! #1173697I needed a break from last minute tax paperwork so time for an update of all good news!
I have been bumped to 137mcg of Synthroid. Bloodwork in 3 weeks. I am continuing to lose a slow but steady 2lbs a week. I feel lucky that my dose adjustments have been painless and unnoticeable. No bad days after adjusting so far.
The incision is nothing more than a thin red line. 90% of the swelling at the site is gone.
My voice returned to normal March 12th. No remaining soreness or difficulty.
So far I feel better than I have in several years. I am back to living life outside when not at work, just in time for spring. It feels good and different to finally have energy and motivation without heart palps, anxiety or headaches. I did some raking a few hours ago. It was 92 and sunny. I wasn’t uncomfortable or anything. For so many years I have been angrily uncomfortable in any heat. Poof! Gone! No more! (Small victory for most but monumental to me. Hooray! I can rake leaves in the heat! Lol!)
For the hope of continued health I am going to stick with the Dr. Blum autoimmune diet (organic, gluten free, corn free, soy free, refined sugar free), vegan version. I recently met someone with MS who is on it as well and they have had some symptom alleviation. I still have an autoimmune disease to keep at bay so eating anti-inflammatory is an easy sacrifice if it works.
It sounds glib but in many aspects, having a TT gave me my life back. I know a lot of it has to be with being mentally prepared for the whole procedure, start to finish, but having the actual gland removed instantly dropped the perceived inflammation level in my body. Waking up from anesthesia I felt like my body had taken a huge exhale. An inner calmness instead of the normal wound up. A month and a half later I look back and say wow. Just wow. Still a complete and total change from what it was before surgery. Calm, cool, collected, and up for any challenge.
Every day I celebrate how unremarkable and “normal” life has become. Best decision ever. No regrets.in reply to: And…it’s done :) #1182158Awesome news Sara!
Take it easy this week. (Advice I couldn’t follow post op. lol!) Feeling better makes you want to do a lot but give yourself time to recover physically and the surgery will continue to pay off even more.
I am so happy you made it through with few complications. Keep us posted!
Rob
in reply to: antidepressants and Graves #1182131I was on a merry go round of meds before I finally figured out it was the Graves’ making me nuts. (Lithium was my next step but I threw the brakes on short of filling that script)
None of them helped except for Valium, and that just made me doped up so I didn’t really care. (At some points, that is exactly what I needed, don’t get me wrong.)
Some pills work great for treating symptoms (as does meditation, I learned) but the underlying cause needs to be attacked to see real progress, IMO.
Whatever the root of your stress is, I hope you find relief soon.
in reply to: Well, here goes! #1173696Bloodwork: 2 weeks post TT
Free T4 1.2 (.8 – 1.7)
Free T3 2.2 (2.0 – 4.
TSH 29.5H (.45 – 4.5)
I feel good but this leads me to believe I can feel even better with a slight bump in Synthroid. I will know what the Endo thinks Friday.
Kimberly, her muttering caused a moment of anxiety (and nervous laughter from both of us) but it also solidified my commitment to having the surgery sooner than later. I really can laugh about it now, but that day…not so much. Lol!
in reply to: Well, here goes! #1173695I have more of a voice today! As an added bonus, it is a half octave lower than it was before.
Sara I am glad to be of help. If there is one thing I have learned from the GDATF forum, it is that we are not alone. Our friends and dr’s may not understand but someone here always will.
The nodules were a complete surprise, as pre RAI there were none. When my endo did the ultrasound and said what a mess it looked like a few months ago, she did not mention nodules at that time. All she did was mutter “oh god” under her breath and say it was really inflamed.
Bloodwork tomorrow! I cannot wait to see where I am at.
in reply to: Aye caramba! #1182124Good luck tomorrow Sara!
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