On Thursday night, Nov. 2nd, 2006, I was concerned.
NBC News had a short segment by Robert Bazell, their Chief Science and Health Correspondence. And Mr. Bazell and NBC news announced that there’s a “mystery illness that afflicts more than one million people in the United States, especially women”. And they confirmed that the government (Centers for the Disease Control aka CDC) is telling doctors: it’s real. And it’s called Chronic Fatigue Syndrome.
It’s real?? Yes, I KNOW that unrelenting and debiliting fatigue is real. I know that those who live under the classification of CFS have debilitating symptoms which can include incapacitating fatigue. I know symptoms can be variable, individual, and fluctuate in severity, and that friends and family may not really get how sick they are. I have also lived with chronic, debilitating fatigue, as have millions of others whether they were classified with it or not. But to say that it’s a mysterious illness highly concerns me.
Now granted, I have had a proclivity to give the benefit of the doubt for a LONG time. For years, I have listened to the symptoms of CFS with openness and great sympathy. I listened when I read that small outbreaks of similar fatigue disorders have been described in the medical literature since the 1930s. I listened when in the 1980’s, they associated it with Epstein Barr Virus, and later to a much wider cause and effect. I listened when the term CFS was classified in 1988 even without specific cause or marker. I listened when Mayo Clinic stated that CFS was a “complex disorder”. I have listened when Georgetown University Medical Center stated that “chronic fatigue syndrome (CFS) may be rooted in distinct neurological abnormalities that can be medically tested” and may be a “legitimate, neurological diseases and that at least part of the pathology involves the central nervous system.” I also listened when CDC stated that CFS was “unexplained fatigue of greater than or equal to six month’s duration.”
But there are also other facts that make the above information suspect.
1) Chronic Fatigue Syndrome as the label for a mysterious disorder seemed to make it’s appearance within the decade after the lousy but highly acclaimed TSH lab test was created in the mid-1970’s, and during a time when most all patients had been switched from the successful desiccated thyroid to thyroxine-only treatment…both facts which patients now know have been huge failures in the treatment of hypothyroid.
2) Most of the symptoms listed as belonging with CFS are the VERY same symptoms reported by patients who were on inadequate T4-only medications and who were dosed by the TSH. Also, those are the same symptoms that other patients had when they were told they had NO thyroid problem (due to inadequate testing and evaluation of those tests). Additionally, all the symptoms were eradicated when the patient was optimally treated on Armour.
3) Many of the symptoms listed as being those of CFS are the exact same symptoms related to having low functioning adrenals—a VERY common condition that accompanies hypothyroid is a large majority of hypothyroid patients, and which doctors ROUTINELY know NOTHING about. For example. the following symptoms are listed as CFS symptoms, but are ALSO symptoms that hypothyroid patients with low cortisol often have: allergies and sensitivities to noise/sound, fainting, fever, dizziness, balance problems, night sweats, sensitivity to light, anxiety, panic attacks, personality changes, mood swings, unrefreshed sleep…and others.
I am BOTHERED BY THE SIMILARITIES!!
I am bothered by the fact many hypothyroid patients who come onto the many Yahoo and other talk sites state they had the diagnosis of Chronic Fatigue Syndrome when they once were on T4-only medications and were dosed by the TSH.
I am bothered when CFS is classified as a “real illness” when these very same patients on these sites lose ALL those symptoms when they dose high enough with desiccated thyroid, ignore the TSH and instead, dose by the free T4 and free T3, and/or treat their low cortisol if it’s confirmed to exist.
I am bothered by the fact that many CFS sufferers are told they have no thyroid problem, when in fact, the hypothyroid-free diagnosis is usually based on very lousy labs called the TSH and T4…and often with no thyroid antibodies labs, which doctors routinely state is “unnecessary”. And if the doctor did do a free T3, he proclaimed the patient “normal” just because the number was “in range”. We, as thyroid patients, have learned that “in range” means squat.
I am bothered by the fact that several listed CFS symptoms are also those of low Ferritin, which leads to anemia, and which is a common condition with hypothyroid patients.
Now in all due respect to patients who have the diagnosis of CFS, or those who suffer from debilitating fatigue – I have been there. I know there are REAL diseases which produce REAL fatigue that may or may not be related to having a diseased thyroid. I once had acute Epstein Barr Virus for a full year, and understand the deep misery and debilitation of fatigue. And I understand that there are other causes for chronic fatigue which include, but are not limited to, EBV, other viruses, enteroviruses, retroviruses, Herpes Viruses, Lyme, and Candida albicans. I can also ascertain that some fatigue has unknown causes.
But I am deeply concerned that the “millions” that CDC is now stating as suffering from a “real disease” might in fact contain a large body who are suffering from UNTREATED HYPOTHYROID due to inadequate tests such as the TSH and T4, or those who are suffering from UNDERTREATED HYPOTHYROID due to being on thyroxine medications and being held hostage to the TSH, or those who have undiagnosed and untreated ADRENAL INSUFFICIENCY, which can only adequately be discovered with a 24 hour adrenal saliva test — and even then with the understanding that being “in range” means little.
I want to make it clear that I am not saying that “everyone” who is classified as having CFS has undiagnosed or undertreated hypothyroid. The world is not that black and white. But I do suspect, based on the information given above, that many in that “millions” possibly DO have undiagnosed or undertreated hypothyroid, and/or adrenal insufficiency…and have not done the correct tests to confirm it, and to help RELIEVE them of their misery. The evidence is simply too compelling.
Ellie said:
Nov 05, 06 at 9:06 amJanie–
I couldn’t agree with you more. John Lowe in Colorado, who has had great success treating fibromyalgia patients with thyroid hormone, discusses in his books in great detail the possible reasons why some patients with normal thyroid blood tests might still respond to thyroid hormone.
I can’t help but feel that there are many untreated or undertreated thyroid patients out there suffering from “CFS”.
Ellie
rob said:
Nov 07, 06 at 7:24 pmi was exactly the same i got epstein barr at 16 years old i am now 40 and have been taking thyroid med for 3 weeks.. i have had the most debilitating fatique on and off for 20 years ..the worst period being in bed for 6 months feeling like i had overstrained my heart.. i recently did all salva tests etc adrenals fine but this specialist i went to picked up my thyroid with temp av 36 c and borderline tsh..i would agree about cfs being this… i got so sick of it this year i went to a therapist and went on aropax …it only lasted 5 days on a 1/4 dose..my BP went to 195/95.. i wasnt depressed…the whole thing is scarey when you live it day to day and you have to get use to the fact thats you for life.…rob
Liza said:
Nov 13, 06 at 9:58 pmI crashed, lost my job, cried all the time, had zero energy, no memory, couldn’t sleep, etc. My doctor (female) gave me anti-depressants, but I wanted thyroid meds. She told me and I quote “If I gave every middle aged woman who felt tired, thyroid meds, all middle aged women would be taking them”
Finally she gave me some Synthroid. I felt a little better, demanded her to up the strength, and she reluctantly did. Felt a bit more energetic.
A family member gave me some Armour thyroid and after 10 days I felt re-newed, alive, full of positive outlooks and thinkings. My whole internal system is working properly and my skin is clearer. Needless to say I am very angry at my doctor and would like to find a GP that understands the T3 and T4 connection without making it a middle aged female complaint.
My story by Liza Last of Canada
Lou Ann said:
Dec 03, 06 at 11:52 amI was ill since 1983, diagnosed with Epstein-Barr, Chronic Fatigue and Fibromyalgia these last 23 years. It has been a nightmare. The fatigue and pain sucked the life right out of me. I managed to keep working but slept every opportunity possible. At lunch, I slept under my desk, in my car, etc. I went straight home after work and went directly to bed day after day, month after month, year after year. I did happen to hear about John Lowe’s theories that these conditions are usually found to be hypo. So, when he practiced in Houston, I made an appointment with him & discovered through tests that I had central hypo. We lost touch and I never had the opportunity to finish his treatment which included adding T3 to the Synthroid that I was already taking.
Fortunately, about 6 years later I found an endocrinologist who was sharp and receptive enough to new ideas and added the much needed T3 to my treatment. What a miracle…life began to fill up my body and soul. If only I had started the T3 treatment years earlier. My endo also found that I was vitamin d deficient. My dermatologist found that I was low in ferritin so have had to add iron to my diet. I have done pretty well since then…however…I’m struggling somewhat again with fatigue more than pain and lots of hair loss which is frightening. I finally found a doctor who understands the significance of saliva testing. He ran the tests on my hormones and found that every single test taken was low. My adrenals were nearly shut down, low testosterone, low estrogen and low progesterone. Since then, his bio-identical hormone treatment has helped to get my readings nearly back to normal. My ferritin is still low so I will up my iron intake and hope that this will help my fatigue. It is my understanding that low ferritin can cause fatigue. My initial ferritin years ago was @ 17 and lately it is 22…far from what the ideal reading should be. My dermatologist told me to try to get it to @ 70 and keep it there…so I have a long way to go.
Lastly, I am trying Armour for the 3rd time. The first 2 times were unsuccessful. I ended up experiencing more pain than before however it is my understanding now that the adrenal fatigue is most likely the reason that I was unsucessful taking Armour. Apparently, the adrenals have to be healthier in order to handle the potency of Armour. My adrenals are healthier now and I am taking more B5 to try to keep them healthier. I have been on Armour for nearly a week now. No magic yet but no pain yet…as before. I am hoping that Armour can be more successful than the Synthroid (T4) and Cytomel (T3) combination. It is my understanding that our bodies usually respond better to the natural hormones versus the synthetics. So bottom line…yes…yes…yes!
I now consider the diagnoses of Epstein-Barr, Chronic Fatigue and Fibromyalgia nothing more than doctor’s ignoriance. If they would educate themselves and quit fighting the evidence…especially that of real patients who have lost years of their life to fatigue and pain and eventually got their lives back again with combinations of T4 and T3, they would do right by millions of hurting and tired people. It is so unfortunate that egos get in their way. There is no excuse for this malpractice to be allowed to continue.
jamie kerans said:
Dec 03, 06 at 8:04 pmi have suffered with depression, horrific mood swings, no desire for fun things, and at age 26, became addicted to opiates. I am now 39 years of age. I gave my ex-husband custody of our 3 chidren during my depression and addiction, feeling so inadeqate and helpless in my ability to be a mother. I was married at 19, gave birth to my first child at 21 and that is when it all began.Ii suffered with depression and anxiety after only hours after the delivery. And from that moment have ridden the rollacoster of madness in the mental arena. It was just 7 days ago that my pcp did a TSH and put me on synthroid. And in the past few days i have read articles and stories like these that have been really helpful. Out of the truck load of mental health professionals I have seen over the past 15 years never did labs. And today i feel really hopeful that things will be better.
Darryl Turner said:
Feb 19, 07 at 9:54 pmHi, I agree with everything that has been stated, & I have also been diagnosed with “cfs.” I am on 12mgs of hysone – have only started taking 3/4 of a grain of Armour today after a couple of months of 1/4 & 1/2 grain. I stayed on these dosages as I started to have insomnia and very bad headaches I think, because I tried to up my dosages too soon. So I backed off this time and have progressed excellently, listening to my body and up the dose when I have needed to.
I too have had problems with the medical profession here in South Australia, because I dared to talk with some authority, with the help of medical papers & dared to ask for treatment that was not the norm or thought of by my GP or Endo. I had a cortisol saliva test of which was done by a laboratory which was not used by the Endo, or my GP, so I was in the poo straight away because of that and found that my cortisol was low. They both had problems with the test.
I demanded to have cortisol and my GP reluctantly prescribed it to me. Not the dose that I am on now but only 5mgs of Cortisone Acetate (another derivative of cortisol and less potent than hysone). This hardly did anything for me so I politely demanded that I have hysone and he did so reluctantly.
Last month I went to an Endocrinologist, a Professor David Torpy and told him that I was on 12mgs of hysone (HC) and he said that he was not happy with that dose and that it was tooo high! He said I should have a blood test because he was sure that my adrenals were suppressed, taking that much. I had the blood test and I saw him last Thursday, 15th Feb, 2007 and he said that my cortisol blood test was normal. He then proceeded to say that he was happy with the treatment I was on including the Armour thyroid I told you about earlier.
But that was not the end of the story. He said, “Darryl you know we are all going to die & I think you should have another interest outside your research into cortisol, thyroid therapy and “cfs.” Do you have any interests or hobbies Darryl? I think that you should go & find a job in retail & do 1 – 2 hrs a day” (and more or less go away). I could not believe it.
A couple of years ago I saw a paper written by Torpy talking about low cortisol in “cfs” and treatment with low cortisol therapy was mentioned in his paper. I also looked into my own medical history and looked at the medications I have been prescribed and I have had nasal sprays like rhinocort and beconase AQ of which both have corticosteroids. In 1985 I had had 6 surgeries in 6 years because of a bicycle accident & after the 4th surgery, I started using the nasal sprays because of chronic sinusitis and found out that you can acquire adrenal suppression using these medications. I found out as well you can acquire the adrenal suppression when undergoing general anesthesia.
And I talked to both my GP and Torpy about this being the cause of my so called “cfs” and the endocrinologist, Professor Torpy said that I was on the right track but it is very political. At the end of a commentary by Torpy, he talks about how low dose cortisol treatment for people with “cfs” was used in a study overseas and that this therapy helped these people. But in the next sentence he says that if you use high doses of cortisol you can suppress the adrenals. Thank you and goodnight.
Not bad. Cheers. Darryl Turner p.s. You can find Professor David Torpy’s PDF article on “Familial Corticosteroid-Binding Globulin Deficiency Due to a Novel Null Mutation Associated with Fatigue and Relative Hypotension” The Journal of Clinical Endocrinology and Metabolism