Home care is the theme for Severe ME Day on August 8th
Why should home care be the theme on Understanding and Remembrance Day for Severe ME on August 8? Helen Brownlie of the 25% ME Group has written an explanation for Phoenix Rising ...
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I need your advice :)

Discussion in 'General Treatment' started by Buster, Apr 5, 2012.

  1. taniaaust1


    Sth Australia
    http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94 You may find this Dr Byron Hyde study interesting thou it isnt the study I seen in the past UNLESS the one I read in past was the final outcome of this (I clearly remember the results were 18-19% had thyriod cancer and I think it was a ME/CFS specialist who did the study).

    "100 patients whom I have investigated for (ME/CFS)[3], with or without associated Fibromyalgia Syndrome (FS), I have found that 6% of these patients had thyroid malignancy. In each of these patients the diagnosis was made by ultrasonography and needle biopsy under ultrasonography. This was followed by surgical removal of the thyroid, and each case the malignancy was confirmed.

    These findings would suggest that 6% of the ME/CFS patients seen, or 6,000 cases per 100,000, had a confirmed thyroid malignancy. Unfortunately, these figures may be conservative since we are in the process of obtaining needle biopsies on six further cases of these first 100 patients. In addition, we have not yet performed thyroid ultrasound on all 100 cases. We are in the process of further investigation of those patients who had not yet been investigated by thyroid ultrasound. "

    compared to a rate of 0.5 to 3 patients per 100,000 in the general non ME/CFS population

    1. ME/CFS patients who demonstrate the following:

    a.Abnormal SPECT scans involving cortex and subcortical perfusion defects,

    b.Thyroid malignancy,

    c.Whose fatigue syndrome does not recover after appropriate surgery and thyroid hormone replacement, and

    d.Have a tendency for cervical vertebrae pathology may constitute a chronic subgroup of ME/CFS patients.
    2. ME/CFS patients should all be evaluated by thyroid ultrasound and, where appropriate, needle biopsy to rule out thyroid malignancy and other thyroid pathology. The fact that ME/CFS patients may have normal serum chemistry for TSH, FT3, FT4 and normal Microsomal and Thyroglobulin antibodies does not eliminate thyroid disease.

    3. A chronic Hashimotos Encephalopathylike syndrome may be concurrent with ME/CFS patients who have thyroid malignancy or multinodular thyroid disease or other thyroid pathology and chronic subcortical & cortical brain SPECT changes. Non-recovery after thyroid malignancy surgery and adequate thyroid hormone replacement may be related to this chronic ME/CFS encephalopathy.

    4. ME/CFS patients without thyroid malignancy yet with treated thyroid pathology, and who have not recovered from their fatigue syndrome, may also have a similar NeuroSPECT brain dysfunction. "

    Ive got to go and rest, I'll see I can find the one with the rates Im talking about another time for you. I think the ones with that subgroup tended to have osteroporosis too.
  2. Buster


    Thanks, taniaaust1. Interesting. I am unclear on what sub-set those with ME/CFS AND thyroid cancer might fall into, but will keep looking.
    Are there any others on this board who have had thyroid cancer as well as ME/CFS? Or know anything about the ME/CFS sub-set that I likely fall into?
    Trying to find out more, but searching this site, and googling didn't shed light :(
  3. triffid113

    triffid113 Day of the Square Peg

    I would focus on tests first because you can learn the most from tests. I only starting taking charge of my health since I joined Life Extension (www,lef,org) and was able to order my own tests. Doctors don't spend as much time with you as YOU spend with you and I think YOU are best qualified to diagnose yourself. No doctor ever did anything but waste my time and money until I took charge of ordering my own tests and reading and interpreting the results.

    I wold be sure to run these tests (and fyi you can discuss the results of any www.lef.org blood test with lef doctors) by phone:

    Rich's panel (the one that measures SAMe)
    OATs panel (metametrix)
    hair analysis (traceelements)
    get genes mapped - this panel http://www.heartfixer.com/AMRI-Nutrigenomics.htm
    get hormones measured - this panel http://www.lef.org/Vitamins-Supplements/ItemLCM4098/Urinary-Hormone-Profile-24-hour-Urine-Test.html
    full thyroid panel (TSH, free T4, free T3, both antibodies, reverse T3)
    CBC with blood chemistry
    cortisol saliva test
    Vitamin D
    Epstein Barr (EBV) acute infection
    RBC Magnesium
    Neurotransmitter panel - http://www.lef.org/Vitamins-Supplements/ItemLCM4098/Urinary-Hormone-Profile-24-hour-Urine-Test.html
    and I would contact BiancaS who has had a lot of interesting labwork done and find out exactly what interests you and where you might obtain such tests.

    I go to Dr. Roberts, www.heartfixer.com. He is the smartest doctor I have ever had. But he is a heart doctor, not a CFS specialist. He now knows how to interpret OATs tests, he gives good cortisol saliva tests and neurotransmitter tests (his is by Sanesco). He mapped my genes. I like him because many of my genes are particularly threatening for heart and kidneys and his advice helps me avoid drugs, of which I would require many.

    So IMHO after you have taken the tests and determined what you can after seeing the results you should take the REMAINING money and see what one of the doctors advised by others can do for you. But I think you do the best if you take charge of your own health. I never had a doctor figure anything out until I started figuring it out myself.

    SaraM likes this.
  4. Wally

    Wally Senior Member


    Yes, I have had thyroid cancer and I have been diagnosed with ME/CFS. There is not a lot of information that I have been able to track down on the subject, but the remarks by Byron Hyde made me want to delve into this further. The EBV connection is where I have been most interested. Perhaps we can start another thread to discuss this in more detail.

  5. Buster


    Hi Wally, that's a good idea. I'll start another thread on CFS/ME & thyroid cancer. Can you or anyone else suggest which forum category this sort of question belongs in?

    Do you know what ME/CFS sub-set you fit into? I'm pretty convinced that it might help me figure out my sub-set of CFS/ME, if I can find out where those with CFS/ME & thyroid cancer typically fall sub-set-wise. If I can understand my sub-set, then maybe I can find the best matched CFS/ME doctor to treat me.
  6. Buster


    triffid113 - thanks for your perspective. I continue to be pretty amazed by how generous everyone here is with their time/energy/knowledge.
  7. Mya Symons

    Mya Symons Mya Symons

    If I had someone offering money to help, I would definitely take it, as long as they did not expect too much in return because I would be unable to give back.

    I would try to find a doctor who would treat with a combination of antivirals like Valcyte and the immune suppressor Rituximab. I don't think my case is anything that anti-retrovirals would help. I already know I make too many B cells and I strongly believe that is the cause of my CFS and FMS. But, if you think anti-retrovirals would help, you would probably want to look for one of the very few doctors who would be willing to prescribe them.
  8. Wally

    Wally Senior Member


    I don't know which category a thread about ME/CFS/Fibromyalgia and Thyroid Cancer should be started in? Perhaps a moderator will have a suggestion. You may want to make it a broader catergory, so it covers any thyroid related problems/diagnosis - i.e. hypothyroidism, hashimoto's disease, graves disease, benign thyroid nodules and thyroid cancer. A number of those topics probably already have threads, so you might be able to collect some of that information to put in a broader thyroid thread. Feel free to PM me if you would like to discuss this further.

  9. Xandoff

    Xandoff Michael

    Northern Vermont

    There is a co cure list that might have Doctors in Canada. I found my real ME CFS Doctor in Masachussets on that list. After being fired from my local GP because I tested normal for everything. Three weeks after I was fired I got my test results from Whittemore Peterson and it was positive. This gave me the courage to see a real ME CFS Doctor. I showed the new the test results and he put me on Valcyte. (expsenive). He then tested my blood before I took the Valcyte. These are the test results that stood out. There were many more that my Doc tested for.

    My Lab results indicate that Ion top of being XMRV positive (sept 2010) I tested positive for HHV-6 ( 3.45), Chlamydia Pneumoniae AB IGM (>1:256), Cytomegalovirus AB IGG CMV IgG (3.1), anemia (on going) High C-Reactive Protein, Vitamin D defiency (29), (in spite of taking 3,000 I.U. a day!) Low DHEA Sulfate (15.0), Mycoplasma Pneumoniae IGG AB (104) Low Testosterone (258) on going, and it suggestive of a past Epstein Barr Virus infection.

    After 14 months on Valcyte I discontinued it and I am seeing the return of some symptoms. I am still sick. Very sick. I came down with this in 2003 and had neck surgery that launched my ME CFS into orbit. It was until 2010 that I knew what I was dealing with. I didn't need the surgery and it didn't help. The lesson learned is that traditional Docs can not help us.

    Again my free Irish Advice is that you need to get in to a real ME CFS Doctor who will treat you and begin a relationship with you. Good news on the Nagalase is that it can be shipped to Canada! I think my Doctor will have a way for me to get the GcMAF here in the U.S..

    Bottom line this is a real disease and you need to get to a real specialist. Google Co-Cure List for ME CFS, maybe that will bring it up. It goes State by State and might have some Canadian Docs on it.

    I am 30 miles from the Canada/Vermont Border. Good Luck. Get the help you need now. Like the old Nike Ads JUST DO IT!
  10. svetoslav80

    svetoslav80 Senior Member

    Never :) This is lots of money for me and I wouldn't risk it as I know the chance to achieve some significant improvement is small. Probably this wasn't the answer that you want to hear but I decided I'd give my 2 cents.

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