I was diagnosed with CFS one year ago, after almost a decade of fatigue. I haven't seen very many doctors about it and although I have almost all of the symptoms of CFS, I think there's something else wrong. I am going to see an endocronologist this week and was wondering if anyone else had any luck seeing them or any specialist? What kinds of questions should I ask? Any help would be greatly appreciated!!
Ask your endo if they will do a TRH test - not a TSH test- to check your thyroid. Also since you have CFS, see if they will test your conversion ability. By that I mean your ability to turn T4 the inactive thyroid hormone into T3 the active thyroid hormone. also ask them to do a Reverse T3 test and ask if they have ever treated a CFS patient or patients and if so, how many and did they do these tests?
If not, you may want to find another endo and/or another doctor who specializes in treating CFIDS patients and is familiar with the thyroid connection. Hypothyroidism appears to go hand in hand with CFIDS and will be either clinical or sub-clinical, have a conversion problem or will convert T4 into Reverse T3 which is just the opposite of what you need to stay healthy. Reverse T3 was convenient to our caveman ancestors who might have starved without it. We don't have that problem, but it can turn on when our bodies are stressed by illness.
I would consider checking for Lymes Disease as well, but it can only be done reliably at certain labs. IgeneX (in California) is one of the best and docs can draw and send to them. I wouldn't even bother using Quest, Lab Corp, etc. as they continually show false negatives.
The reason I suggest this is because of the great number of people wih CFS who are now finding out that underlying the CFS symtoms is (actually) Lyme. This was my case. I was diagnosed with CFS 14 years ago. Someone suggested Lyme to me and I started doing research and visiting Lyme boards. I finally got tested a year ago and it was positive for Lyme, which has sent my treatment protocols in a different direction. Many people now believe that CFS is symptomatic of something else and, unfortunatley, Lyme is often the culprit.
PS: Lyme doesn't just come from tics, but also mosquitos, gnats, etc.
I'm glad they finally found your Lymes, Peregrines, and that you're getting the treatment you need. For me, that wasn't the case. I have been tested for everything one can think of by a top rheumatologist and Lymes is not in the picture. Besides, in my neck of the country, we're more likely to get West Nile virus from mosquitos than Lymes or, since we spray our subdivision regularly, we actually much more likely to get some serious fire ant bites. I have the scars to prove that one.
My case is very typical of CFIDS. I was a workaholoic Branch Operations Manager for the local presence of a Fortune 500 company, overachiever, power-walker (miles every day), with inordinate stress due to a merger and down sizing of my original company, loss of numerous key employees, several bad personal relationships including my marriage, when suddenly I was injured on the job. I lost my ability to work, my income, my job, the ability to return to my job if/when I rehabed (corp. closed the office), my independence (I can no longer drive), my ability to think my way out of a situation, and the relationships all went from bad to worse.
I suddenly began running fever, ached all over in muscles and joints that had nothing to do with my injuries, and ultimately developed the entire gammat of CFIDS symptoms I've read one could have and maybe more.
Like MS and SLE were thought to be depression or in peoples heads until MRI's and other testing was developed, I believe CFIDS is a desease (they'll probably call it something else when it becomes an official desease rather than a syndrome) and there will be a test or tests discovered some day to diagnose it readily and research for treatments and cures will be underwritten by our government and other funding as much for this as for other deseases. From my mouth (fingers) to God's ears.
Like you, I had classic CFS symptoms ... still do, but I now understand these are symptoms of Lyme. I, too, was tested for Lyme early on by specialists, but at the wrong labs (there are only a few that really understand how to test for Lyme.) For years I scoffed at any suggestion I could possibly have Lyme, but at the urging of someone on the Lyme board here finally decided to get properly tested.
Lyme is not confined to the northeast but is all over the US. It can even be transmitted by black flys.
I respect your feelings about CFS and understand them as well. Not everyone who has CFS type symptoms will have Lyme but many, who would never think to go down this road, will, so that is why I return here from time to time. Further, if one does have Lyme there are actually treatment protocols, so if nothing else it's important to rule it out.