[Hopeful23 November 29, 2008 at 4:35 pm Post count: 211]

#1075158

Wow, I really know what your going through. I have the same symptoms and facing the same problems. I however just started medications. My dr said that there would be a chance where the medicine wont work and other treatments such as killing the thyroid or removing it would result. Im not really educated on this disease yet but all I can say is be pro active on how you feel and get other opionions until you get the results you want. It took them two years to diagnose me because I kept going to different people and getting tests done over and over. Dr’s are quick to make you seem its trivual but you are the only person that knows your body. Like i said i understand your frustration and the life changes you have made but dont give up hope keep trying. I would see what else is available to you. Not everything you try the first, second, third or fouth time will work it takes time, patience and trial and error. Unfortuetly graves disesase doesnt give much time for trial and error due to is severity and symptoms. Just keep trying and log everything down so your dr has it in writing and can look at it. I was leaving key symptoms and feelings and even diets out of my symptoms and once i really wrote it down and told the dr everything it took them 10mins to diagnose me. Its hard and it can suck more days than people understand but just keep your head up and be pro active. I also wanted to know how you got on disability because I need to look into that.

[diannechr November 29, 2008 at 6:18 pm Post count: 3]

#1075159

as I said in the earlier post, I have been to the top Dr’s in this field – being as proactive as I can be and the Dr’s are not taking it lightly – it’s just a mystery because my thyroid is normal, so there is no medication and my Dr. does not really believe in steroids (I’m thankful for that)

— as far as the disability goes, I, fortunately was covered under my former employers short term and long term disability insurance – but first I applied with the state (CA) – with Dr’s reports and all sorts of tests run, scans, ultrasounds, the iodine test — blah blah blah – it was approved and the LTD kicked in after 6 months. Now I am being paid through the private coverage. It’s approved 6mo intervals at a time and my Dr’s are all supporting, including the psychiatrist ):

[diannechr November 29, 2008 at 9:22 pm Post count: 3]

#1019943

I was diagnosed with Graves Disease about 3 years ago – should have run its course … blah blah — I have normal thryoid functions – which is why this seems to be a mystery. Have been to several world renowned facilities and I am still suffering – extreme exhaustion, headaches, unable to function on a normal level and have been on long term disability now for close to 1 1/2 years. The pain around my eyes and the floaters are, at time, unbearable. I never feel rested and am taking some medications to treat the depression and to control the nerve pain. I have researched all the websites and have not come across anyone or any description that matches mine. The discomfort, most of the time, makes it unbearable to even do the slightest task, let alone think about ever being able to fully function in the workplace. Can someone comment – is there anyone out there ?

[Jake_George December 1, 2008 at 4:37 pm Post count: 120]

#1075160

It can be a great mystery. This thing we call Graves’ disease. Have the doctors considered that what may be "normal" thyroid levels, may not be normal for you?

To get a normal range they take a large set of tests, some high and some low, to come up with an average. I tested in the "normal" range for years and felt much as you did. My doctor finally upped my thyroid levels to read at the "high normal" rates and I felt much better. Now running high normal causes other problems that need to be addressed. Such as increase bone loss and muscle mass loss.

But you may have been a high normal when you came down with Graves’ disease and now they are running you in the normal range which may be low for "you".

It does not hurt to talk to your doctor about this. Also ask how you body is converting T3 to T4. Some people do not covert well and may show a normal reading when their T$ is actually low. The doctors need to run a full thyroid panel, not just TSH which some insurance companies think is sufficent.

Jake George
On-line Facilitator

[diannechr December 2, 2008 at 1:58 pm Post count: 3]

#1075161

very interesting — I will address this with the Dr. — gee I hate to get all caught up in a myriad of meds ):

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