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in reply to: Runners with Graves? #1183677
I also have Graves – diagnosed just over 2 years ago and I, along with my endo, have decided to use the ATD (Methimazole) option until it doesn’t ‘work’ anymore.
I am fortunate that , while I rode the Graves rollercoaster between hyper and hypo and back for short time, even then I never experienced the extreme effects that many others have.
I am not a runner, but I am very active with a daily fitness center regimen along with cycling, kayaking, and hiking – at least when our New England weather permits.
But I am also a walker (and started it in earnest AFTER my Graves diagnosis) – and last year I participated in the Jimmy Fund Boston Marathon Walk – which follows the exact route of the Marathon – and I did the full 26.2 miles in about 7 hours.
Yes, Graves is a royal pain – but it can be overcome -maybe not in every circumstance but probably in most. There is light at the end of the tunnel you are in.
Hang in there and keep working at it ! Best of luck !
in reply to: Methimazole trigger Graves eye? #1183415It really concerns me when someone says:
” I’m not going to rely on Drs and Insurance companies with their protocol bullitens to do what they think is best for me.”
I hope others that read any further information about your experience realize that people here are NOT doctors and probably haven’t received any medical training (some are nurses) and they are taking their own health and lives in their hands if the opt to go the same route as you and ignore their doctors’ advice.
Just my thoughts on the subject.
in reply to: Graves and now period of a fib #1183029Just to provide a different perspective. I survived a major MI seven years ago, at age 57, through the wonders of modern medicine, fantastic medical and nursing staff at Baystate Medical Center, strong support from my son and daughter and the grace of God. One diagnosis that was made during my short stay at the hospital was that I had a fib and because I had not seen even a primary care doctor for several years prior to my incident, my cardiologist could not say whether it started with my MI or was present before it.
In any case, I was put on a Warafin (Coumadin) routine to thin my blood. And I have following that routine for the last seven years – and have completely recovered from the MI. Yes, as Shirley has pointed out, it does require frequent labs to make sure the blood thinning is in the correct range.
Unfortunately about two years ago I was also diagnosed with Graves. I have added methimazole as another routine daily drug. At some point I may opt for RAI, but I haven’t reached that point yet. I have to count my blessings as I appear one of the lucky few who, while experiencing a certain amount of the rollercoaster between hyper and hypo, I have not suffered any of the serious effects that many of you have and I am living a healthful and active life. In that regard, on September 21, I will be participating in the Jimmy Fund Boston Marathon Walk – doing the entire 26.2 mile course.
I decided to write this just to let people, especially newly diagnosed folks like Stacy that it IS possible to overcome both Graves and a fib.
In closing – Greater Than Graves !
in reply to: Long term use of ATDs #1182548Thank you – works fine now.
in reply to: Long term use of ATDs #1182546Thanx, Kimberly.
I was at the Boston Conference where that discussion occurred – I wanted some specific data and the article provided it. My endo still feels that the potential negative side effects could happen at time without warning and for that reason is very much against it.
btw – you may want to check the Treatment Options links – I had no luck in finding the guidelines document.
Bill
snelsen wrote:Just the usual reminder that we are doctors, but fellow patients, I do have a couple thoughts for you to consider.Just to point out – and I know that Shirley would agree – there is a missing word in the statement above and that word is “NOT” – as in “we are NOT doctors, but fellow patients”
in reply to: Maximum amount of time you can be on meds? #1181760I have been on ATDs for just over a year and while my endocrinologist seems to want me to decide soon between surgery or RAI, I asked him if I could delay that decision and he reluctantly agreed.
Recently, I had the opportunity to speak with a noted endocrinologist from Mass General who provided me with two interesting points – other than the potential for liver problems, there really are no known negative side efects from long term use of ATDs and for MOST people, the liver issue typically is found within the first couple of months.
He also noted than actually the biggest issue with long-term use of ATDs is the patient not taking the medication as prescribed – ie – stopping or forgetting to take it.
I certainly would agree with Kimberly about NOT recommending people to read that book. How can you get across the idea that some parts are worthwhile – but others parts are downright dangerous to follow ? It would be a tragedy for someone to read and follow all parts of that book and have someone in their family suffer (or worse) because of it. While there may be some good parts to it, I don’t believe it is worth the risk. Those ‘good parts’ can also be found from several other, much better and safer places.
[quote=Kimberly When things are fluctuating, I need labs and office visits about every two months, all of which comes out of pocket, as my insurance company won’t cover anything Graves’-related.
[/quote]Kimberly,
This just finally caught my eye… You are a facilitator(and a very good one) of the GDATF forum and your insurance won’t cover anything Graves’ related?
I’m sorry – but that has to be one of the strangest combinations I have heard about.
in reply to: Surgery (non-thyroid) update #1179933Thanx, Boomer
Yea, feeling it more today but I know it’s just temporary so I can deal wigth it. Trying to use as little pain medication as possible.
Bent over a bit – but really more walking like an old man – not yet able to skip…lol
Looking forward to be able to get back on my bicycle and get back to my exercise regimen – but I know that’s at least a week away.
Itchy hasn’t started yet – hope it doesn’t – but it certainly has a deeper shade of purple to it ( wasn’t there a song like that?).
Bill
in reply to: no medication “prep” prior to TT? #1179940Tally,
Like the others, I am NOT a Doctor, but I can tell you this.I happened to be diagnosed last November with both Graves and an inguinal hernia. The Graves I never really noticed, but the hernia did cause a substantial amount of pain – so I wanted that taken care of as soon as possible.
But when I met with the surgeon, he said that he would not even schedule the surgery until my thyroid situation was stabilized for fear of thyroid storm during the surgery.
Well it took about 6 for my reluctant thyroid to finally learn to behave itself because of the methimazole I was taking and I finally had my surgery yesterday.
I am not saying that it will take you 6 months, but I would strongly urge you to talk to both doctors and make sure they agree that surgery at this time will be safe for you.
Good luck and best wishes and hope everything works out for you.
We are all here to offer whatever assistance – emotional, past experience, etc, that we can
Bill
in reply to: Surgery (non-thyroid) update #1179931Thanx everyone (again).
Thanx – Shirley – I have the bent over part taken care of today – lol.
Bill
in reply to: Double-barrel good news ! #1179807Thanks , everyone, for the good wishes – they are greatly appreciated.
I will post a simple update as this surgery is not Graves related.
Bill
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