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in reply to: Functioning with Graves- the new normal… #1184501Kimberly wrote:Great info – thanks for sharing your story!
…Of course, focusing on nutrient-dense whole foods and cutting down on processed foods with unpronounceable ingredients is always a good thing!
Yes, this is what I am talking about and cutting out soda. I don’t follow any particular diet but for many people just learning to eat natural foods and cutting out sugar is a big step, myself included.
in reply to: Newly diagnosed and confused #1184475Hi! My first doctor… although, I was currently waiting for an original doctor appointnent that I had booked previously but was so symptomatic that I had to see any doctor to get started on methmizole right away. But, the available doctor did suggest I look on the Internet and figure out which treatment I wanted. I came back and said I wanted surgery he said okay and gave me the name of a surgeon. I even booked an appointment with the surgeon. Then my appointment came up with the original doctor who saw me and he was amazingly thourough and knowledgeable he insisted on reaching remission through medication. Needless to say, I stayed with him and I’m so glad I did!
The methmizole route was a long process but once you are on the meds you start to feel sane again pretty quick. It takes longer for the brain fog and muscle tone to come back but maybe if you work at it happens sooner. I had a toddler with some delays during the worst of my graves so I had a lot of extra stress to deal with, which is the worst thing for autoimmune disorders.
Let me know if you have any questions. Check out my post in the success story thread.
in reply to: Share your Success Story! #1183870Hi! Long time no post as well!
I was diagnosed in 2012 and started on 30mg of methmizole. I gradually came down to 10 mg without incident then was stuck around 10 mg give or take for a couple years then gradually made it down to 5 mg and stayed there for a couple of years then finally made it to 2.5 and also hung around for a year or so. Then my endo started talking about remission and going off it completely. I kept coming up with excuses that I was too stressed and it was risky to go off to zero. He let me stay but finally told me to STOP! That was a few months ago. So far so good.I am trying to get my muscle tone back but that is probably due more to aging than the graves but over the years the graves definitely impacted my muscle tone and brain. As for my brain, again that is an aging issue, but over the years the graves absolutely caused brain fog to the point it was hard to learn anything quantitative. I am taking a computer programming series and I have completed 3 out of the five courses. That is something I could never have done while in the throes of graves.
I still want and need to go back to work, which is really hard after being home for five years. I am grateful that I was able to recover as well as take care of my child during the horrific graves spell. However, I do fear that work is something that could trigger a relapse. So, that is my next hurdle, finding a job.
But, overall I feel pretty good. Just grateful I made it through and I now know the symptoms should I start to spiral again.
in reply to: Methimazole dosing #1180464Yes, I bought some pill cutter combined with the days of the week for pill storage at cvs. A piece of junk. I don’t want to buy another one so I’m using my nail for now.
in reply to: Methimazole dosing #1180462Oh my, I tried cutting a 10 mg pill in half and it crumbled. I can’t imagine cutting it in fourths? I totally see just licking the crumbs:)
in reply to: Just when things seemed okay, vitiligo? #1180401I am sorry to hear about your additional diagnosis of cancer and hashi. I definitely will PM you with more questions. I heard that one autoimmune leads to another but I didn’t believe it. I have always been so healthy and the shock of my health failing has been hard to accept, which of course, doesn’t help my stress level.
Thank you so much for responding it’s really comforting to know someone else understands.
in reply to: thyroid antibodies #1180116Hi, funny you should mention antibodies. My primary doctor said insurance covers the B12 shot I got to help the vitiligo. I just needed to be tested for antibodies. I called the nurse to add it to my blood work for my endo visit and the doctor said what he needed was already covered in my usual blood work? Who knows this just gets weirder by the minute.
I also lost weight “due to my hard work and dedication” ha ha. But, to answer your question I felt better after a couple of weeks on the medication. Getting “back to normal” however, is an ongoing process that leaves little to be desired. And who knows if one ever feels great again?
in reply to: Graves Disease!!! WhAt …I am Scared!!!! help #1180296I went the Meds route as well. I have been on meds now for about 8 months. I started with 30mg of methmizole then 20 then 10 and now back up to 15. I just started to develop vitiligo another autoimmune disorder. I will see the doctor at the end of the month. But will get blood work done this week to see what is going on?
With that said, I actually started feeling better after a couple of weeks at the 30 mg dosage. And I have yet to feel as bad as I did when first diagnosed. I have felt not great but never that panicked crazed feeling you get when you are untreated.
BTW, after reading your post I now know why I was so damn scared to drive over the Chesapeake Bridge to go to the beach last summer.
Welcome, you are in good company!
in reply to: what is happening to me??? #1180309I’m sorry to hear about all your difficulties. I can’t imagine having four kiddos under 12 and going through this. However, the unsupportive husband I can relate to, oh so well.
Please try to get get as much help as possible from friends, family, mother’s helper? Every bit helps when you are at the worst point, which seems to be the phase you are at right now? AKA the “Crazed Paranoid State.”
It does get better but it takes a while. Hang in there.
in reply to: I’m back and feeling better #1176962Interesting, I tend to go by how I feel and labs. For example, I swear I do best a little on the hyper side of the normal range. Today I didn’t know my
lab results going in but I knew I had to be a little hypo and I was feeling crappier since my previous labs. Sure enough, I am hypo per the lab results. I don’t know if the doctor changed my dosage from 20mg to 10mg methmizole because of the results or just my complaints. I probably would insist on him giving me a lower dosage if he did nothing but then again he’s pretty good at setting me straight when I go blaming everything on methmizole. I will ask him next time what he looks at to determine the dx.I expect I will get a little hyper again in a month or so. I use to have a pill cutter I wonder if I still have it somewhere?
So, I guess that makes me the newest member of the “GDATF swingers club!”
in reply to: Stress and Graves’ #1177090Absolutely! I know my husband gave me graves for sure!
in reply to: Is the Uptake Test Necessary? #1177124Hi! I had my first doctor say the uptake was necessary in order to decide how severe it is and how much medicine to give you. Also, I co-sleep with a 5 yo 😮 and I don’t remember that being a problem as I am pretty sure I asked about that. Along with the uptake they did lots of other X-rays. I was in there for a while.
Now, if you or someone doesn’t have insurance possibly you could skip it and eyeball the dosage since you end up tweaking the dosage throughout the process. I just remember thinking how expensive it would be had I not had insurance. Unbelievable.
in reply to: New to GD, Had RAI – Feeling OK? My First Post! #1176372How are you feeling? The ATD can help pretty quick not like beta blockers but after a few days it’s possible to notice an improvement but since it’s just to get over the RAI dump I would normally try to wait it out but with too little ones I would most likely go for it! Please make sure you don’t deviate from the dosage your doctor gives you and let him know when you are feeling good as well as bad. Good luck!
in reply to: Sports Injuries and Graves Disease #1176501I think it is just the muscle waste from being sick. Therfore, whatever is your vulnerable spot whether you know it or not, gets hit hardest. I also dance and it’s been hard getting back in shape. I have in the past suffered from shin spoints so…
First make sure you stretch them every day after waking up and before bed. The best is the one where you put your foor up against the wall. Wear the boot at night while you recover from the shin splints. Make sure your shoes/sneakers are not too old.
But yes, I too am dealing with the aftermath of muscle waste!
Same thing with me. I had to wait to see my original endo like 2-3 months. I found another endo in the meantime just to get started on the Meds. I kept my original endo as a precaution in case the temporary one was not so good. And boy am I glad I did. The one I had to wait for was amazing, which is why the long wait for new patients. Once I saw him I didn’t have problems scheduling follow-up visits.
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