EBV or Thyroid Disease?

[EarthMother]

I told my doc about this web site and he asked me if other POTS folks also had positive tests for Epstein Barr Virus (EBV) or Thyroid Anti-bodies. I have autoimmune thyroid disease and we were trying to see if either it or the positive tests for EBV seemed to be correlated to the POTS.

Searching, searching, searching.

EM

[MightyMouse]

Neg EBV, Neg CMV, Neg Lyme, Neg specific antingens for autoimmune disorders, yada yada yada

the only abnormal blood work that I've had are:

elevated sed rate

elevated ANA, nonspecific

and low total blood volume

[Ling]

I don’t have the conditions to which you are referring; you wanted to know about other related diseases. I suffer from Reactive hypoglaceamia, Barlow Syndrome and Pots. The doctors say that these three diseases are all connected to each other and share many of the same symptoms. I am a doctor’s nightmare due to it being impossible to effectively treat all three of the diseases. As soon as the one gets better the other two come out to play. I have many other funny problems and don’t know where to exactly connect them to. But I think the knowledge of know about three present diseases is fine by me.

I was recently told by a medical aid that Reactive hypoglaceamia are just symptoms and not a problem. Pots is unknown and Barlow’s is present normal but dormant. I told the lady I wish her all three diseases and then we can talk again. The naivety is absolutely astronomical to me. I think these people read a few lines on a disease and them make some ridiculous conclusion.

[nicole]

EM,

I had a positive EBV when I was 23 and all these symptoms started after a bout of mono. I was then misdiagnosed with SVTs and treated with a beta blocker for 3 years then I seemed to get better. Now 15 years later its back and my new doctor dx me with POTS and I am getting better with meds. Over the years all the doctors tested my thryoid but always was normal. Think I should do another EBV panel? What is your doctor looking at? I know my problems started with the mono. Thanks Nicole (you can email me direct)

[JacobyD]

EM-

I had thyroid cancer in 1996 followed by a complete thyroidectomy. Now that I have total control over my thyroid hormone levels (via adjusting my Synthroid doses), I can say for sure that thyroid problems can be directly related to many autonomic symptoms.

I recently lowered my Synthroid dose and after a couple of weeks experienced a lower heart rate, less nausea, and I felt better overall. Following a thyroidectomy, it is usually the doctor's goal to put you on as high a dose of synthetic thyroid hormone as possible. This - in theory - prevents your body from trying to generate natural thyroid hormones on its own, and should suppress any return of the thyroid cancer.

What they forget to think about is the price you pay for being in a Synthroid-induced state of hyperthyroidism over a long period of time. I am convinced that the high level of Synthroid I was taking contributed to some degree to my eventually 'crashing' a few years later.

I know this isn't directly related to your autoimmune thyroid disease condition, but you should have your THS and thyroid levels checked to see if you might be in a hypo or hyperthyroid state.

I have also had a negative EBV test and multiple negative tests for Lyme (Western Blot) performed by the most experienced Lyme Lab I could find (IGeneX Labs).

Hope this helps and that you find answers,

-Dan

[amb]

I was dx with POTS & POH last February. I also have Fibromyalgia(FM). Among my search of alternative ways to treat FM, I tried a homeopathic remedy program. One of the recommended remedies was for the liver. The remedies are made according to the person's needs. They determined this by testing a saliva sample. One of the things they found in my saliva sample was a trace of EBV. The saliva test was done by the lab that makes the personalized homeopathic formulas, not through my physician.

I don't know what kind of test would be ordered by a physician to confirm EBV, but I know I had 6 tubes of blood drawn in two different incidences when my neurologist was trying to determine the cause of my constant fatigue, excessive sleepiness, dizziness, tremors etc...... I will have to ask him if I was tested for EBV. He also had some thyroid tests done, I'm not sure which ones, but they were negative.

I also have sleep apnea and mitral valve prolapse. I was reading Ling's post about having diseases that are related to each other. Seems like most of the symptoms that I have or had are common in all the conditions that I have. When ever I feel crappier than usual, I have no clue which problem is making me feel that way. I noticed that most of us that have POTS also have other medical problems. Does any one know why?

Thanks for starting this forum & thanks for all this great information.

Ann

[Guest Julia]

I also have hashemoto's thyroiditis---which is autoimmune. I was diagnosed by accident because I didn't really notice any symptoms other then a little sluggishness. MY gynocologists nurse practitioner ran some blood work because hypo thyroid runs in the family.

My mother had a goiter removed in 1970. I had all these little issues all my life with IBS and hyper adrengic states (AKA -Panic Attack)-but I don't like that phrase. It was usually mild in nature until later in life with child birth and exposure to chemicals.

My child is 22 now---and it's been three years since I have been around the ink solvent chemicals. I have had a gradual improvement---but still struggle with POTs symptoms with exertion. I'm not sure if it's related to my cervical spinal stenosis/bran stem compression or not. I assume it does---because child birth and chemical exposure would sure aggrivate that. But at the time I was unaware of the severity of my stenosis. The stenosis would not allow me to metabolize toxins normally---and the child birth was difficult causing lots of pressure to my upper spine.

I wonder if my thyroid issues were stirred up from my inability to process toxins correctly--thus creating autoimmune reactions. My mind goes crazy thinking about all this stuff---because there are SO MANY possibilities. I do notice a lot of people with POTS have other illnesses connected---or perhaps some kind of injury.

Julie :0)

[pamyla]

When I first started experiencing problems I had a positive EBV test. However a few months later I was retested and the doctor said that I was negative. So, I'm not sure on that one. If it was related, I would say it only would have affected me in the general sense that my immune system was on overload. (I was later found to have a toxmoplasma infection) It does seem that a lot of pots people have illness as a trigger....

[MightyMouse]

Oh, I should mention that I did have two accute mono infections--one at age 19 and another at age 26. However, I've had POTS/NCS all my life, with my first syncope happening before age 10.

Nina

[EarthMother]

Thanks everyone for such thoughtful responses.

Ling: I feel for your story about the education process we go through with some doctors. One of mine recently referred to POTS as a nuissance.

Nicole asked about testing for EBV and what my doctor was doing for it ... unfortunately we aren't doing anything specific to the high epstien barr titers. We don't know of any anti-virals that will work so we've kind of put this on the back burner in hopes that my body will find it's way out on it's own.

Dan: I think you may have hit the nail on the head with the Synthroid dosing ... I have Hashimoto and take "full replacement" meds in an attempt to keep my own thyroid supressed. But my blood work last week came back with my TSH at .13 (range .34-5.6) so it would appear I am probably taking too much Synthroid. I'm currently at 112 mcg and will need to talk with my doc about dropping it down a tad.

Hugs to everyone.

EM

[lalalisa]

I am new to this forum but was excited to see another person who also had EBV and POTS.

For me, I had mono at age 21 and now again at age 23 and this led to POTS which has lasted for almost 2 years. I still have an active ebv infection after a year of resting.

Thanks for your post!

Lisa

[Michelle Sawicki]

I've had a positive ANA. I don't think I was ever tested for EBV.

Michelle

[MomtoGiuliana]

I have autoimmune thyroiditis as well as POTS.