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in reply to: Alternating dosing of Methimazole? #1182786
You will think I’m nuts but I always make sure it’s the same dose every day and divide it into three separate doses. I spend a lot of careful time with the pill cutter and have tried every brand of methimazole my pharmacy carries to find the brand that cuts the best. I can feel a difference between 2x and 3x a day dosing and alternate day dosing would probably put me on the ceiling or under the floor depending. Everyone’s experience is different though, maybe if you keep a journal you can see a pattern of which dosing scheme works best for you.
in reply to: More TED trouble #1182800HUGS to you! You are going through some stuff as serious as it gets, you are no whiner to vent or ask for support! I don’t have any direct advice really other than to say TED is always listed as the most serious quality of life aspect of Graves – maybe it might help validate you (or depress you so be cautious) to read about others experiences with it and the long-term impact studies?
in reply to: reacting to transition in dosage issues #1182790I have this problem as well even with very small dosage changes. My endo has said it’s because I’m unusually sensitive to thyroid hormones. Dosage changes up or down bring at least a week of a hell for me. If it is a downward change the hell feels like being hyper even though I’m not and I take a little beta blocker during that time if it gets bad for fast heart rate and nerves. I try to take the absolute minimum dose that helps because it is temporary and then I have to wean off of that once it’s not needed anymore. For upward dosage changes I just accept I won’t be able to do much of any activity and will have joint pain for about a week. The worst I’ve had the change symptoms go is two weeks but usually it’s just one week. Good luck!
Oh and caffeine – for the temp hypo period I do indulge quite a bit. There are probably healthier options out there for stimulants though.
in reply to: Soy exhaustion #1182766Why eat it? In my case the tendency to eat soy comes from the fact that it is the only really good dairy substitute widely available. There are other substitutes but I don’t find them to come even close and none have equivalent protein content. Still I have reduced soy quite a bit where I can. Your link definitely gives me more motivation too – there’s got to be a reason all those people in Europe refuse to eat the GMO stuff. Feels like we are behind the curve.
in reply to: Soy exhaustion #1182764Hi Sue, I don’t have as strong a reaction but I do find soy causes a slow down. One time I removed it from my diet and I did feel more energetic and clearer. But then I fell back into it accidentally again – it is in everything! Edamame are so delicious but the pure stuff! There is a big backlash going on right now against soy, especially GMO soy, you might find a lot online if you look at naturopathic websites.
in reply to: Why is TSH more important then Free T3/T4? #1182640Great to see you Beach! How’ve you been? Sounds like you’ve been having to wrangle a bit to get the right thyroid meds but I hope you feel better soon. There are studies and theories about how the Graves’ antibodies can affect TSH in and of themselves and we keep those antibodies even without a thyroid. And there’s also TSH’s overreaction to T3 or Armour supplementation. I really wonder why modern docs aren’t keeping up with these things and why we have to fight so hard and research so much??? I was lucky in that my TSH popped up from suppression early in my ATD treatment and has actually been a useful barometer moving in line with the FT4 and FT3. If it were not though, me and my endo would likely had some disagreements. Still I’ve been less lucky in that on paper my ATD treatment looks like it is going well but I still feel very compromised in certain areas especially mental and emotional. I keep waiting to feel normal, not sure if it’s an available option. Have you found there’s a normal after RAI when your replacement is calibrated right?
in reply to: Would you believe: Shingles! #1182738I’m glad it wasn’t worse Barbra! GD sure leads to some freaky things at times and the doc needs to stop rushing out the door so fast!
in reply to: Palps are coming back….. #1182710Hi Calbears, for me the palps are usually a sign of my thyroid levels being too low. In my case it’s PVC arrhythmias – have you had an EKG? I share your frustration! I’ve had my methimazole at just the right dose many times and then it slips away and has to be readjusted. Graves getting worse or getting better both will lead to you needing a dose change and suffering symptoms till you do. So much fun. For practical reasons surgery is not an option for me and I don’t want to do radiation, so I ride the methimazole rollercoaster. On the bright side we still have an option for remission though it could take a while. I hope you feel better soon!
in reply to: Eye Floaters #1066312I got new floaters with GD so maybe a connection? There’s one that always seems to hang out right in the center of my vision, very aggravating with the computer and sometimes I think it’s a bug flying by and start trying to swat it. Very embarrassing when I realize it’s IN my eye and it fooled me again. I am hoping it dissolves over time.
in reply to: Anybody know about TRH? #1182675Thanks for the link! I guess TSH is enough to keep us busy anyway!
in reply to: *** Dr thinks that I’m in remission *** #1182667Hi Carito, I surely hope you are in remission. I was heading toward remission clearly at one point – with each reduction of my methimazole dose my test values didn’t jump up but then a big bang of stress put an end to that. My TSI values haven’t correlated as closely as I expected to my lab responses to the dosage changes so I’m not sure what to think really at this point. I think as long as you go slow and steady with the reductions and work closely with your doctor on frequent labs you won’t get into too much trouble either way!
in reply to: Graves eligible for Disability? #1182580I will check these out, thanks Kimberly!
in reply to: So now it’s the eyelashes #1182588Hugs to you Shirley! Thanks for your care and I wish you too could have a break from Graves/TED issues too – you’ve done your time! I hope they are able to numb your eyelid to remove the lashes? I wonder if they can ever adjust the lid angle in another surgery? I couldn’t blame you for not wanting to let them try either though. I have to admit I feel quite the wimp to be so undone by what I know are minor issues compared to what you deal with and what Graves’ can do. I think I just started this journey with the wrong expectations – my mother has Graves’ too and had a TT almost immediately back in her youth. She always acted like it had zero effect on her life other than having a neck scar. Not sure why my experience is so different – I’ll be manning up in a minute here and moving forward. Anyway you are an inspiration!
in reply to: Graves eligible for Disability? #1182578Kimberly and Connie, I’ve wondered about this too. I need to return to work and worry that my mind literally will be unable to do the kind of work I did previously. Just today I had to make a list for the grocery store for a trip pre-Graves I wouldn’t have made a list for. And I still forgot two of the items after checking the list several times while in the store. I hate to think how that will translate to my future job performance. Does Graves qualify for accommodations on the job like a disability at all? And if you want to go that route do you wait to tell them till after you get the job or before? Guessing before might mean no job offer at all!
in reply to: sore hair? #1182528Hi Alexis, you too? Okay I say this has got to be a Graves’ thing! Thanks for sharing hope life is good for you post TT.
Update – so my hair is doing better though not completely normal, my labs showed that I was definitely in subclinical hypert territory – TSH of 0.3 though my other labs were mid-high normal. Now I will start a new thread on an even more obscure Graves’ hair effects…eyelashes.
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