I also posted this on the thyroid page because I wasn't sure which would be better. This is the first time I've posted to this particular forum. After a year of dealing with all sorts of health problems I finally got some answers that leaves me with more questions. Back in 2001 I got mono and within 2 months developed hypothyroidism. Of course some of the symptoms overlapped so other than the major weight gain and hormonal issues my docs didn't look beyond the mono and it took over 3 years to get a diagnosis of hypothyroidism. Once I got on thyroid meds everything settled out and I felt wonderful for 3 more years until the end of summer '07. I had been under a tremendous amount of stress (full time stressful job and owning our own business) for about a year and by Oct '07 I had to take disability from my job because I couldn't work anymore. I noticed all my initial symptoms reappearing and over this last year I have been on every thyroid med at every dose available and am feeling better than I was a year ago but still have almost all symptoms. I knew there had to be a connection to the mono in 2001 and developing thyroid disease and knew that EBV always stays in your system and in rare cases extreme stress can cause a flare up. I kept requesting that my docs test for the EBV (I didn't know which mono I had back in '01 so I wasn't even sure it was EBV). No doc wanted to test it until I finally convinced my new doc to just check it out. I just got the call from their office and he wants to see me b/c they got my lab work in and turns out I have mono again meaning my antibodies are high again (will be low if the EBV is dormant). So now I don't know what to do. I know this is causing my body to not use my thyroid meds correctly but from what I know there is no cure for EBV except rest (steroids for swelling of throat only). Has anyone else had mono twice and have complications with their thyroid? What can I do about it? Thank you for any input.
I know there is a connection between CFS (and fibro) and low thryoid. Here's the info:
T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."
Kent Holtorf, M.D. --- link to article: http://www.immunesupport.com/fibromyalgia-treatment.htm
Yeah I actually see a leading specialist in the connection between fibro and thyroid hormone resistance and he has helped me tremendously in understanding the connection. I'm one of those strange people who cannot handle any synthetic hormones though so right now I am actually working my way off of cytomel because I ended up having major problems with it (with NO relief of symptoms) and am going back to Armour only. The Armour worked great for me for 3 years while my EBV was dormant but a year ago it just stopped working and I didn't know why until now. I'm just trying to figure out how to deal with the EBV and find out if there is anyone else out there that has thyroid disease that is uncontrolled despite rigorous treatment for the thyroid. BTW I don't have autoimmune thyroid disease (usually this is the type connected to EBV). I just don't get it...
I don't think there are really any specific tests for chronic fatigue. I do know that back in 2001 they thought that might be it but also gave me the following diagnosis to explain each one of my symptoms seperately: IBS (because of constipation), GERD (because of stomach pain), chronic fatigue (because of tiredness), PCOS (because of weight gain and missed periods). I knew there had to be one thing that was causing it all- no way I had all these disorders at once. I also knew it was related to the mono since all these symptoms appeared within 2 months of developing mono. Three years following the mono they finally determined it was hypothryoidism and I was put on thyroid meds and all my symptoms vanished 100% until the end of last summer when they all came back. We tried playing with my meds but nothing has helped. I finally got them to do a EBV test and it shows that I am either in the recovery stage (meaning I just had another outbreak) or I have chronic EBV. It's not a coincidence that when I get mono again my thyroid problems come back.
I know we all dislike the name "Chronic Fatigue Syndrome" (if I remember right.. the CDC named this illness after they were forced to investigate it and they said it didn't exist..) Now physicians and researchers should know better. The evidence is there and there is a spinal fluid test that apparently can make the diagnosis (Red Labs USA). In addition, I hear that they have been working on a blood test and it should be out within a year !
If you have CFS... the experts are saying that it is VERY important to get treated right away... the sooner the better. However, there are many physicians who don't treat CFS and/or don't know how to properly diagnose it. Consider googling, "Co Cure's Good Doctor List" for a list of physicians who routinely diagnose and also treat CFS (AKA: post viral syndrome, ME and Chronic EBV)
A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:
cognitive dysfunction, including impaired memory or concentration
postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
joint pain (without redness or swelling)
persistent muscle pain
headaches of a new type or severity
tender cervical or axillary lymph nodes
Other Common Symptoms
In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:
irritable bowel, abdominal pain, nausea, diarrhea or bloating
chills and night sweats
shortness of breath
visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
weight loss or gain
Thanks for the info I wasn't aware of that. My question is though can CFS go away? They thought I had it back in 2001 but in 2004 my body was cured 100% with no residual symptoms at all just by taking time for my body to heal from the EBV and getting on thyroid meds. It wasn't until I got really stressed out last year that all the symptoms reappeared. From the little info I know of CFS I was under the impression that you have it for life and it couldn't go away maybe just lessen???
CFS can go away... but it is very rare that this happens. (sorry)
I hope that you will consider joining me in the fibro / CFS community. I am one of the Community Leaders in the forum... here's the link to our health pages, which may interest you:
Also, to find a physician who knowledgeable and frequently treats fibro & CFS, I would highly recommend googling, "Co Cure's Good Doctor List". On their website, they have physicians listed in every state.
Thanks so much! I think that I probably don't have CFS then which I'm happy about. It did go away for 3 years so that at least should rule out CFS I think it's just the EBV and the thyroid thing for me. I'll check out the page though because I'm sure there is lots of good info anyways and I always like to learn more to keep well informed.
BTW I do currently consult with a great fibro doc but I haven't filled him in yet on the findings of my EBV (it's not covered by insurance and we've had some money issues lately that have kept me from seeing him for a few months). I'll check out that list though maybe one is covered by insurance??
I'm glad to hear that you may not have CFS. The CDC actually had changed their criteria.... they say, "all eight symptoms". That used to be 4 symptoms (out of the eight) so I'm not sure what happened.
For years after having mono I had symptoms... muscle aches, unrefreshing sleep... but didn't have the joint pain and other symptoms listed above. I think I had CFS, but I wasn't diagnosed until my illness took a turn for the worse (and then I had the joint pain and some of the other symptoms).
Take care of yourself and I hope that you will continue to stay in touch !
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