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Frustrated-no DX

Hello,

I know that many CFS/FMS'ers have thyroid issues. I am frustrated because I went to see my neurologist again today and was told that he thinks my issues are caused by my thyroid. He told me that my right eye is protruding and could be indicative of Graves Disease. He wanted a CT scan of the eye, but my insurance will not pay for it because my TSH and T4 are normal. He also ordered a TPO and Thyroglobulin test. My TSH is on the low side of normal but the other #s are WNL. Because the #s are WNL, I can't get the insurance company to approve a CT scan. I know that Plateletgal has told us that we often test abnormal for the Reverse T3. When I mentioned this to the neuro, he looked at me like I was crazy. Now, I have to go back to the endocrinologist who didn't seem to have a clue the last time that I saw her either. It is all so frustrating. My only hope at this point is the rheumatologist, who I have an appt with tomorrow morning. The tingling has subsided for the most part, but comes and goes. I am still having a buzzing feeling in my left foot, ringing in ears, sore throat every morning that I wake up, along with an internal tremor. I am in pain, but not a whole lot, which makes me question fibro. All of my mri's and neurological workup has been normal with the exception of Epstein Barr and Vitamin D deficiency. Is anyone else being treated for thyroid disease with thyroid ranges WNL?
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Your Epstein Barr could be causing your thyroid problem and yes, the problem is with the T3 and is detected by a Reverse T3 test and a TSH 3rd Generation test, which I had done at the Fibro. and Fatigue Clinic and this is exactly my problem.  With Fibro and Chronic Fatigue patients, the body does not adequately convert T4 into T3.  When the production of active T3 is decreased, it turns into inactive or "reverse T3" instead.  I was given T3 hormone. Chronic infections cause this problem. My thyroid tests where considered normal in the traditional medical community too.
Is your Epstein Barr reactivated??  The test to have is called "EBV IGG VCA by IFA".  This shows how high your EBV number is and if it's abnormally high, like in my case, it's considered reactivated.  I also have vitamin D deficiency. I have sore throats everyday among many other flu-like symptoms at this stage because my immune system is currently being boosted by IVs and supplements, so my body is trying to fight the infection and then symptoms get worse.  Sore throats are a symptom of EBV.

Warmest Regards,

Ree4tu
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Forgot to mention that viruses like EBV can affect nerve endings and cause all kinds of strange sensations in your body including pain.

Ree4tu
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Thanks for responding. All 3 of my EBV titers are high. 2 of them were like 1800 and 3200 and the first one was like 130. The neuro just told me that my levels were high indicative of treatment to include convalescent care....YEAH right! I only wake up with the sore throat, but it subsides as the day goes on. Most of my symptoms are neurological, which is really scary! I am on a natural supplement that my neuro put me on in December. I have been feeling better but not 100%. All of this started after a bad viral infection in July. I have not felt the same since. I can't even get most doctors to even acknowledge EBV. I went to an ID doctor and he laughed at the dx. He told me that the lab probably reported the #s wrong. I asked him if he used the same assumption when someone had a + HIV test. He just looked at me very weird. As you can see, I live in a town full of quack doctors!
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I am happy to respond to your post. I understand what you are going through. My EBV titers have been tested twice so far... both over 5,000. The Fibro and Fatigue Center in Philly said my number is in the top 3 of what they had ever seen. Your numbers definitely indicate reactivation and my guess is probably the fact that they fluctuate indicates your immune system is attempting to get it under control, but numbers that high shouldn't go untreated. Obviously the fact that you have thyroid problems, neuro, and rheumatoid issues means you need treatment for your EBV. We get it, why a lot of traditional doctors don't is beyond my comprehension.
  My severe symptoms, including the neurological symptoms, began after a bad virus also last year. I believe I always had a low-level of EBV which was causing fatigue for many years and then once hit with another bad virus on top of all the job stress I had, it reactivated my EBV. Since reactivation, I feel like I literally have the flu everyday, but one that doesn't go away.
My doctors never took the EBV seriously either and my family doctor wouldn't even test for it when I asked despite the fact I had all the symptoms of an ongoing viral illness. She said to me, "95% of the population has EBV and there's nothing I can do about it."  Not true...Antivirals such as Valtrex and other antiviral meds are given to others who have reactivated viruses in the herpes family. My rheumatologist didn't take it seriously either.
The Fibro and Fatigue Center takes it very seriously though and finally I am getting treatment, but like I said the treatment makes you sicker before getting better, especially with my number as high as it is.
You should have your EBV numbers checked again to see if the natural supplement is lowering them. I can't believe your Infectious Disease doctor didn't even take it seriously! I wonder what he would say about my number. This really angers me !! I hope you can find someone, perhaps an alternative medicine doctor or a Fibro and Fatigue Center depending on where you live.

Good Luck,

Ree4tu

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Ree,

Yes, my ID doctor was unbelievable. I have not been dx'd with thyroid disease, at least according to my lab reports, so I have made an appt with the endocrinologist to see if I can get some answers. That appt is next Wednesday. Tomorrow, I am going to the rheumatologist. If the rheumy doesn't take this serious, my appt with him tomorrow will be my first and my last appt with him. I am taking an antiviral and this is only because I kept getting infections and the ID doctor did give me a RX for this, though he stated that he did not feel as if the RX would help in treating EBV because as stated before, he doesn't believe in EBV. I am also on a number of other vitamins that have been helping with symptoms. For right now, I have to go to the specialists that are on my insurance plan. If I don't get any answers or attempts from the rheumatologist, then I will go the specialty clinic in Atlanta and pay out of my pocket. I am also going to push to be tested for lyme disease. I ordered the kit from Igenex and will see if he is willing to draw my blood. I keep hearing all kinds of stuff about lyme too. At this point, I just need to know something other than waiting another whole 9 months before I can get another MRI per my neurologist.
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Here is the source for your physician. I will also check later for additional information about this as well. All I know is that when I took iodine, OMG.... my hair was soft (it was dry before) and other symptoms improved as well. I KNEW I had a low thyroid because I had ALL of the symptoms of hypothyroidism and I improved with iodine supplementation. (btw... please don't take iodine because of my post. If you are considering it, consult with a physician first ... especially if they think you may have Grave's disease.... that would make your condition worse).


"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

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The Fibro and Fatigue Center treats EBV with antiviral med for 6 months along with other supplements and patients do get better.  I am glad you are taking an antiviral, but it really does sound like you need your thyroid treated too to gain 100% of your health back.
Is the antiviral bringing your EBV numbers down? This would be proof that it works and could be why you are feeling a little better, but probably just need to keep taking it.  It is good you are looking into bacterial infections like Lyme also. You are on the right track.  It's just a shame it has to be so difficult.  My best to you.

Ree4tu
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I just wanted to thank you Ree4tu, PlateletGal, and ginak for these posts. I am learning so much from you all and hope to take all this info to my doctors and I will at least feel informed when I talk to them.  I have noticed when I mention EBV and CFS, people just brush it off. I too, have a sore throat every morning.  For 3 years, none of my doctors even mentioned EBV or CFS, even though I had the symptoms. Anyway, I am learning much from these two forums. Thank you! Colleen
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Hi Colleen,

It is very rough having either a CFS or fibromyalgia diagnsis. I never knew how judgmental people could be until after I had my diagnosis. And discrimination.... as well as isolation often go along with a CFS or FM diagnosis. That is why it is soooo important (my opinion) to stick together and have support... but also the facts. We need to educate those around us, sometimes including our own physicians, who don't understand these illnesses. I often feel like telling people, "well at least YOUR condition (ignorance) can be cured".  ; ^ )
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Went to see rheumy today and I left disappointed again. The only thing that I liked about the visit is that the physician really listened. I don't think he cared, but he did listen. We went through my entire history. He told me that there would not be any tingling or tinnitus if it was fibromyalgia. I gave him the opportunity to look at the rashes on my neck. Once again, he told me that people with fibro did not get rashes. I asked about the EBV and he didn't have an answer or a solution for this. He told me that he felt this was a neurological disease/disorder. I could tell he did not want to really service me. He did not even want to give me a follow up appt. I went up to the desk and asked about a follow up and was told that the physician will contact me. I am afraid that when doctors don't understand a condition, they want to easily dismiss you because they don't want to have to think. He ordered blood, an entire Lupus and Sjorgen's panel and that was it. I left in tears. I don't really know what to do now. I couldn't believe he said there was no tingling with fibromyalgia. He even told me that my spinal fluid would not show an elevation in myelin sheath protein with Fibro. I told him that it should with EBV. He wanted to know why I did not go back to the ID and I told him about the horror story with the ID. I told him that I had called every ID in Georgia and each of their offices told me that they did not treat nor acknowledge EBV. I cried all the way home. I feel worse today than I did before I even went to the doctor. Oh, he refused to even sign off on the lyme test from Igenix. I think it was because he was afraid and would not know how to read the results. For him to not want to see me back, I felt even more humiliated. Even the ID scheduled me for a follow up even though he didn't acknowledge the disease. There were even some tender points that he noticed on the exam, but refused to say that fibro would have anything to do with my symptoms.
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"He told me that there would not be any tingling or tinnitus if it was fibromyalgia."

ARE YOU KIDDING ME???
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Gina,

I got very frustrated with the rheumatologist I saw. I fired him and saw another physician and finally was diagnosed after that.

Please consider googling, "Co Cure's Good Doctor List" ---- the physicians listed know about CFS & fibromyalgia and I'm sure they will order that lyme test.

((( HUGS )))

~PlateletGal
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Hello Plateletgal,

Yes, the dr told me that fibro patients did not have tinnitus or tingling. I tried to go to a Co-Cure dr, but none are in my network. I even tried to get an appt with the one here and will pay out of pocket. His office refused to make me an appt because even though I would be a cash paying patient, my dr(PCP) would have to refer me. I won't see her again until February 16th and because this dr on the list is a regular D.O., I am not sure if she will be offended if I asked for a referral. I will just have to wait and see. I plan on firing this rheumatologist and I will be going to see someone else, just don't know who at this point. I am very frustrated.
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Hi gina,

I understand your frustrations. I'm going to send you some links, via private message. Hopefully the links will help you find a competent physician !
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Gina,
I am sorry to hear yet another appointment didn't go well. There is a Fibromyalgia and Fatigue Center in Atlanta, Georgia. I think you would find all the answers you are looking for and be taken very seriously. You already know you have EBV, even though doctors don't believe in it, this is more than enough to be taken seriously at the Center. They treat all the issues including thyroid.

Many traditional doctors are about 20 years behind when it comes to EBV and need to get with the program. They just aren't trained in EBV and therefore don't even recognize it.

The Center told me rashes are common in the Fibro/Fatigue population because of the immune system dysfunction due to multiple issues like chronic infections.  I think I mentioned that I have a rash all over my back going on two months now.  I get the ear ringing and tingling too which is all part of Fibro and Chronic Fatigue illness and the factors that contribute to them. Honestly, I think I have had just about every strange symptom over the past year that exists with these illnesses. I even have an abnormality in my spinal cord seen on an MRI which may be a result of transverse myelitis which I found can be caused by a virus. Viruses can cause all kinds of neurological issues.

Ree4tu
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Forgot to mention that the Fibro and Fatigue Center uses Igenix to test for Lyme and would test you since you already purchased the test kit or maybe your ID doc will do it at your follow-up apt.  I know those test kits are not cheap.

Ree4tu
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Ree,

Unfortunately, I will not be going back to the ID because he is an idiot. I will see if my PCP will order the Igenix test and sign off on it. I had a decreased signal at C5-C6 on my spinal MRI, but no DX was ever given.Overall, the MRI was unremarkable.  I even had a bone scan and it indicated nothing. I am experiencing an internal tremor and don't know where this is coming from. All my physicians here are focused on this being MS and I don't think or believe it is. I simply believe they are too lazy or scared to look for and at anything else. I certainly appreciate your feedback. The doctor from yesterday put the icing on the cake for me. I am going to the Fibro Center in Atlanta. It is going to cost me a ton of money, but at this point, I don't know what else I can do at this point. I hate to sound so down, but I am having a rough time with all of this right now. I just want my life back.
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Just to compare MRIs...I had a hyperintense signal at the T8 level within the cord anteriorly.  I wasn't given a diagnosis either - told just to have a follow-up MRI on this section of my spine in 6 mths to see if it changed.  It didn't change, but that was a while ago now.  I posted this MRI information to a Medhelp Neurologist and he said not too many things would cause this...  Either MS or transverse myelitis.  I am going with the transverse myelitis right now because of my reactivated EBV. I hope it's not becoming MS, but I think even MS can be caused by some viruses-not in all cases though.

Maybe you could post your problem to the Medhelp Neurologist just for another opinion..

THe Fibro Center is costly, but they give you all the necessary info. to send to your insurance company. My insurance company reimbursed for some.  It is worth to get your life back.  That's the stage I am at too. I am glad you are going. It will give you hope so you don't have to be so down. It is understandable how frustrated you are now.

Warmest Regards,

Ree4tu

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Ree,

I know you are not a doctor, but I just wanted you to see what my MRI stated and tell me what you or some of the others think:

My MRI reads like this, "On pre-contrast T1 weighted images there is suggestion of ill-defined decreased signal invlving the C5 vertebral body. This is not well seen on all the pulse sequences and the exact etiology or significance of this finding is uncertain. Bone scan may be helpful in further evaluation to exclude active process in this location. No focal abnormality in the cervical cord is identified. Disc spaces are well maintained without disc herniation or spinal stenosis seen".

I followed up with a bone scan that was unremarkable with the exception of inflammation in my right heel?????
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Gina,
I am honestly not sure.  My guess is a decreased signal is the result of some kind of disc degeneration.  Mild disc degeneration is common and begins in your 30s.  I have some cervical disc degeneration too. This is probably nothing to worry about. The good news for your MRI is there is no focal abnormality in the cervical cord.  Was your MRI done on just your neck?

Try posting this exact information over in the expert form under perhaps a neurologist.  That's how I got my answer for my MRI.

Ree4tu
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Ree,

It was done on my brain and cervical spine. I will post in the expert forum.

Thanks,

ginak
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