2nd Time with Mono and Hypothyroidism

[chel 81]

I haven't posted on here for a while but 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.
Chel

[chel 81]

I'm so glad your daughter hasn't developed the thyroid problems and I really hope she never has to suffer through this horrible disease.
I actually spent 2 years towards a major in nutrition and have been made fun of by everyone who knows me because of my strict eating habits. People either think I'm a vegetarian or call my husband and I hippies because we pretty much survive on non processed organic foods. It does wonders for me when my body is well (I was very thin and fit when my thyroid was under control since I also run 4 miles and spend an hour in the gym several days a week). Unfortunately when things went haywire I was doing all this and still managed to gain 25 lbs and then it got to a point where I couldn't exercise as hard and another 25 lbs piled on. I've never been this heavy in my life and it *****! What do you take for antivirals? I'm on high doses of B-vitamins, Vitamin C, Antioxidents, and Vit-D (for energy) and Magnesium (for my heart palps with Calcium). Is there some other things that you could recommend?
Yes it's been hard for me to accept all this and be patient. We own our own business and it's just difficult not to be able to do what I love and have to sit on the sidelines. I've definitely learned more this past year of being sick though then I did the other 3 years of being sick. I took a lot for granted when I got better... something I know better now. It's funny because through all this I have realized the important things in life- not money or things.
For the last year we have been playing with just my thyroid meds because suddenly the dose that worked wonders for the last 3 years stopped working. Every dose and every med I used didn't work. I knew that when I got thyroid problems initially it was only after having mono. The symptoms that came back last year were EXACTLY the same as when I got mono back in 2001 and my thyroid went crazy. I tried to convince my docs to check to see if I had mono again but nobody would check it until recently. I just got my results and it turns out that I either just had another episode of active EBV or I have chronic EBV. I know it's not a coincidence that the EBV came back when all the thryoid symptoms did too. My doc pointed out that EBV is autoimmune and for some people it will attach either to the thyroid cells or thyroid receptor sites (can't remember which one) and it prevents your body from using the thyroid. I've seen so many docs over the years and I happen to be one of their most difficult cases so many don't know what to even do with me- that's not something you want to hear from your doctor! Luckily my new doc is very patient and is willing to work with me from every angle to try to get me better. Now that we know I have reactivated EBV at least it is something else to look at but I just don't know how I can get rid of it.

[laura1967]

No my daughter doesn't have any thyroid issues yet, thank goodness. My mother is slightly hypo.
What helped me with the EBV was really watching my nutrition and I took a lot of natural anti-virals and did whole body cleanses. It took a little while. :)
I never was a patient person either.....so this whole sickness thing has taught me that! lol  Just try to look forward and not back at the loss of time. Look within yourself and ask what you can learn from this and how it changed you positively. Someday you may help someone else in a similar situation. Find purpose in weakness and turn it around and use it positively. It will make a complete difference mentally and emotionally to you as you complete your healing process.
Also I want to point out that symptoms from hypothyroidism are almost exact to EBV symptoms....so maybe.....just maybe your symptoms are more from thyroid? :)   The great news is that you don't have hashi's or graves! You don't have any nodules either...you are very lucky! :)
I think I would want an answer to why I am hypothyroid.....there has to be a reason. What have your doctors said?

[chel 81]

Thanks for the response:-)

I've heard that EBV can lead to autoimmune thyroid disease but the strange thing is that I don't have Hashimotos and definitely not Graves- majorly hypo. I've made sure that they tested to insure I didn't have autoimmune so it's been checked regularly and it's always negative. They also did an ultrasound of my thyroid to make sure I didn't have any nodules or that it was enlarged or show signs of an autoimmune attack and my thyroid was picture perfect which I guess is a good thing.
The weird thing for me is that with the mono comes all my thyroid symptoms but when the mono is under wraps I do fine with my thyroid (treated). I just wish there was something I could take to get this thing under control faster. I'm not a very patient person and spending almost my entire 20's sick is making me even more impatient especially when I had 3 good years that I just want to go back to.
Do your daughter and your mother also have thyroid disease?

Chel

[laura1967]

Hi Chel....Actually I have had mono twice....and then they found my thyroid starting to go hypo. I was stubborn and didn't take meds right away, so I only made it worse.
No there isn't any cure for EBV....but hopefully within time it will burn itself out and go dormant. I did some interesting reading in medical journals where they have found EBV to be a causing factor of Hashimotos autoimmune disease. (Which I have as well) Have you been tested for this yet, along with the Graves testing?
The best thing you can do is rest and give your body all the good nutritional support you can. You have to listen to your limitations. I have had EBV active for 4 years.....and I am doing much better, but still working on Hashi's and thyroid. My mother had EBV and it took her about 7 yrs to completely heal and get back to normal. My daughter tested active EBV last spring right before summer break....luckily we had the summer for her to rest. We can beat it....it just takes time, like the thyroid as well.