graves2003

[cantsleep2007]

Hello to all,  I am new to this particular board but am dealing with serious health issues.  I was diagnosed with graves disease in 2003 and had radiation iodine treatment.  I am as I have been told, one of those 1/100 who now have fluctuations between hypo/hyper and have learned to deal with gaining 15lbs then losing 15lbs every three months or so.  I have done this for years now but this past year I had ran out of medications due to loss of insurance and within a matter of just a few weeks I ended up in the ER with a TSH of 211.  I was only off the levothyroxine for about three weeks but I became extremely ill.  After being put back on my thyroid medicine that fourth week things just kept going down hill.. This was February of 2010 and since then I have lost sensation throughout my right side with total numbness in some areas only.  This occurred slowly over the past year or so and has moved all the way up into my face on the right side now. There are many many other things both physical and mental that have happened to me over this time.. just too many to list.. I have beed tested and have been to ophthalmologists, optic neurologists, neurologists, retina eye specialist and many other specialists.  It has been recommended by a few of these doctors to apply for disability soon because as a direct result of medical issues from whatever is now happening to me I have lost a large portion of my vision, have been diagnosed with thyroid eye disease, possible optic neuritis and also vertigo. I have an extremely hard time walking now and also have not driven in over a month.  This being the second time to stop driving because of vision issues.  I am by no means at all wanting to scare anyone who has graves disease because like I said I am one in 100 and have been told this many times.. : (  I have been told over the past year that this could be ms and carry several of the symptoms of ms.  I have had two MRI's and they did find lesions but ms is still inconclusive.. there is sooo much more and I must apologize for the length of this post.. Just wanted to know if this could be ms? could my graves thyroid storm have caused all of this to happen and to continue to make my health deteriorate? I know it is a lot to ask all at once and I actually joined the multiple sclerosis board last week as recommended by the doctors at a hospital I was recently released from.. I am just ready to learn to deal with what is happening to me and must say that now the new meds I am on are starting to help. This is a wonderful thing for me!! MS is a big issue and just cannot be ruled out.. please help if you can.. I know this is only a board and support group and I am doing and will continue to do as the doctors suggest me to do.  Thank You all for your time reading my post and would love to know if any of you on here with graves disease are going through what I am?

[cantsleep2007]

Thank you so much for your input Totie.. I am just making my way around here, just to see if I find someone like me. Who even after radiation iodine treatment still  fluctuate up and down with thyroid levels.  At this time I am as my endo says "my levels are within the ball park" so we are for the very first time in a long time, not switching my dosages.  This does not happen to me often but its a good thing.  I have been between hypo and hyper every since 2003. It is just part of life and I have adjusted to the swings back and fourth.  My levothyroxine has been anywhere between 112mcg to 175 mcg. I have blood work ups about every two to three weeks sometimes depending on what is happening at the time. I have learned when there has been an increase of tsh so I have over a years worth of orders on my kitchen wall next to my calendar to just go in when I feel a major change.  Sometimes I am rite but sometimes anymore I am not.  I use to keep records of my levels for many years but eventually just kinda hung it up so to speak.. it just changed too often to keep up.  It is nice to hear that you are doing ok I wish the best for you hun.. Thank you again.. Terrie

[Totie]

The issues I had with graves were two thyroid storms. I had one before being diagnosed and another after RAI treatment. I eventually had my thyroid removed. I do have TED, but not losing my vision. That was 17yrs ago. My thyroid storms consisted of weight loss, HR @ 140 sitting down, insomnia, my eyes bulged out, my entire organs went into over drive. I was hospitialized for two weeks each time. I was young so did not really ask questions just did what they told me to do. Now I am doing okay.

However, everyone is different in how a certain disease affects them. Please continue to try & rule out MS.