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in reply to: organization abilities compromised #1181725barbra wrote:Sometimes it seems that GD stands for Gone Daft.
Love it!
in reply to: Well, here goes! #1173658Thanks Shugie – I find the “this can’t be real” stage can go on for quite a while! My Graves’ was triggered by a number of stressful events and I believe it keeps me from settling down into remission even now as new stress piles on. Still we pick one of the three treatment options and do the best we can. I’ll not go on though because I don’t want to derail AZGravesGuy’s thread….and btw where is he? Please send us an update when you can dude!
in reply to: Tiny dose change – big symptoms? #1181572I am the same way super-sensitive to changes though in my case it’s miniscule mmi changes! It really threw off my initial dose changes because I and my endo believed my accelerating symptoms meant the dose change was a mistake. Now I know to expect to ride out about two weeks of hell even if it is the right thing to do. For me with the mmi it’s been very important to have exactly the same dose every day at the same time. Still it gets harder with the smaller changes. I tried a compounding pharmacy once and it was great – except for the expense. I wonder if you could get compounded levo at 106mcg?
in reply to: Newly diagnosed with Graves #1181468Welcome Shell, you will find lots of knowledge and great folks here. I’ve been on this journey for 18 months and still struggling quite a bit, lots of roller coaster riding. My biggest piece of advice for anyone starting out is: don’t wait to be well. If you feel well enough, even if still somewhat sick or off, to do the important things in your life go ahead and do those things. Waiting to get back to full and normal health can backfire – not saying I’ve given up because I certainly haven’t, but I put my life on hold for way too long waiting for a state of “normal” that never arrives. Now I know that sounds awfully discouraging so please also read the many stories of people here who feel that they really did get restored. I think recovery is complicated by many factors including genetic makeup, treatment method, and external events beyond our control so it is unique for each person. Wishing you the very best!
in reply to: Well, here goes! #1173654AzGravesGuy wrote:I hope everyone on this board finds their magic combination of diet, medication, treatment, and mental strength to overcome this disease. I still have a ways to go but there is hope. Never give in to this disease.AZGravesGuy, you are awesome. I pray that all turns out okay for you in the three week followup. I would think an RAI fried thyroid wouldn’t look normal anyway? Tonight is a pretty dark night for me feeling like Graves’ has ruined my life to be honest, but reading your courage is inspiring.
in reply to: Pain being hypo after TT. Might go on Armour. #1181488I’m still playing the methimazole game (and not really winning), but this part of my experience might apply to you. I’ve found that even a difference of 0.1 below my optimal FT4 level can start producing hypothyroid symptoms. For me Raynaud’s symptoms do come on once my thyroid levels sink low enough. Perhaps you aren’t in the best place within the normal range for you? Is your doctor willing to experiment or look into FT4 to FT3 conversion issues? Good luck to you and I hope you feel better soon.
Absolutely, what Kimberly said – please get hard copies of your labs. What you think are side effects of PTU (as long as it’s not liver issues) are likely due to your thyroid levels being at a place that are not best for you. Many endos err on the side of keeping them too low within the normal range. I have this problem as well. Even if you find someone who feels like the perfect endo I do truly believe especially for thyroid issues we must always have copies of our labs and be more actively involved in care decisions than we would typically be with other illnesses. Good luck to you!
Edited to add….also if you are planning on TTC your endos should be talking about doing Graves antibody testing beforehand because those can cross the placenta.
in reply to: Well, here goes! #1173650Wow AZGravesdude, a TSH of 12 sounds like no fun at all. I just did the survey Kimberly posted and as I checked off the hyper and hypo symptoms I realized that for me anyway hypo is so much worse than hyper. I hope that this is a sign for you that you are finally headed in the right direction. Maybe the RAI just had a really really delayed effect!
in reply to: It gets better #1181385Andy thanks for the inspiration post – I sure wish I had a guy like you in my life to yell at my doctor to do the right thing. I would do it myself…but honestly I don’t even know what exactly I should be yelling at this point! It’s good to know it can get better but 4-5 years is a long, long time to wait. I wish that there could be some advances in how Graves’ is treated on the ATD or replacement side so we don’t have to wait so long and it isn’t such a struggle to get to a good place.
in reply to: Just when you think……… #1181153Barbra, glad you are feeling better! Only one time I got slightly below the bottom of the FT4 range and I felt like I could barely stay awake and be alive. This thyroid stuff is tough! I hope your endo prescribes enough of the right stuff for you.
in reply to: joint and tendon pain hypo or hyper? #1181370Thanks everybody – I’ve got blood off at the lab so guess I’ll find out soon. I’m also feeling VERY emotional too. Again that could be hyper or hypo, all I know is it ain’t right!
in reply to: Orbital Decompression advice? #1181360I don’t have any info but just wanted to wish you good luck for the surgery.
in reply to: 11 Weeks Post TT #1181337Good to know, thanks Alexis! One of these days I’m planning to try a version of block and replace so that’s why the curiosity.
in reply to: 11 Weeks Post TT #1181335So this thread makes me wonder is there no smaller adjustment possible for replacement hormone than 12mcg? Is there a 12mcg pill that can be split?
Sue I hope you yourself and you find a peaceful zone soon. This thyroid stuff is so crazy you’ve got to talk to yourself because hardly anyone outside the internet can comprehend it.
in reply to: 11 Weeks Post TT #1181330Hi Sue thanks for the update! I know these posts will help many people now and in the future. I’m sorry you are dealing with the mental effects of the dosage change I’ve always found that hardest part of my methimazole dosage changes, like my mind just isn’t my own. I’m going through a similar negative dosage change myself very unpleasant and I debate do I try to ride it out, do I call up the endo and beg for early labs again. I hope you feel better soon!
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