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Patient experience in the doctor’s office makes you weep

I’m sick. I’m tired. I feel awful. I’ll go the my doc’s office for help.

We have all done it, filled with hope and promise. I have done it!! Why not, since our doctor has had at least four years of medical school training that we couldn’t fathom doing ourselves, including working with patients under the supervision of licensed doctors, and 1-3 years of residency following school. Oh and let’s not forget the continuing education, besides experience with thousands of patients before me.

I’m in good hands.

THUD. For thyroid patients, it couldn’t be FARTHER from the truth. The experience in the beloved doctor’s office has been nothing less than dismal, disgusting, and depressing….and nothing more than pure malpractice.

Why? Because there’s not a thyroid patient anywhere who hasn’t gone in with raging hypothyroid symptoms…and 1) was dismissed, 2) told they needed an anti-depressant/pain med/statin rather than better thyroid treatment and/or 3) were told they were “normal” simply because those ink spots called labs ‘said so.’ So we have left…sick, and for years.

Whatever happened to “clinical presentation”????

And if you think that I am barking up the wrong tree, take heed. The following true story, which was related to me two days ago, is exactly like THOUSANDS we hear on this site every week:

I walked into the Endo’s office, feeling awful. I had been told he was the best in the state and I knew he held a high position in the University. First, when I told him about my unrelenting brain fog, he dismissed it. When I told him my cholesterol keeps rising, he said I wasn’t eating correctly (I love veggies and eat fowl more than beef). When I told him my throat felt tight, he said it was a temporary inflammation, take tylenol and it would pass. When I told him that I wanted a treatment with T3 in it like Armour to help my depression, he laughed, saying there was no connection between T3 and mental health. I left with my normal script for 125 mcg Synthroid, a pronouncement that I’m “normal”, feeling crazy and stupid, moving to a sense of COMPLETE rage, and mostly, I felt like a complete fool for ever taking the time. What will happen to me? I can only get worse with my symptoms, which thanks to you site, I can now see are ALL hypo symptoms. Will ANY doctor LISTEN TO ME???

I WEEP.

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Doctors don’t like us using the internet?? Tough!

Today’s morning newspaper was repugnant. The article was titled Doctors not fans of Googling to find ailments. Oh really?? Why are we not surprised! Yes, the article began with the idea that many of us are googling our unexplained symptoms before heading to the doctor and they “aren’t thrilled.”

It then stated:

In fact, doctors used words like “nightmare,” “annoying”, “irritating” and “frustrating” when talking about the burden of dealing with patients who bring in stacks of Internet-based health information (and misinformation) according to a recent study in the Journal of Medical Internet Research.”

It continues with doctors seeing it “as an unwelcome intrusion” and they “resent the new interpretive role they have been put in.”

Does that trouble you, the thyroid patient, as it does me?? In fact, I find it pompous and nauseating. Let’s turn that article around to represent the REAL truth:

Thyroid patients have found it to be a “nightmare” when doctors overtly and unanimously proclaim us “normal” because of dubious lab results (TSH and T4) in the face of obvious and ongoing hypothyroid symptoms.

Thyroid patients find it “annoying” that doctors ignore the continuing symptoms and instead, push anti-depressants, statins, anti-anxiety or pain meds on the patient rather than become educated about the role of a low free T3.

Thyroid patients find it “irritating” that doctors, especially Endocrinologists, blindly conclude that Synthroid, Levoxyl and any other T4-only treatment is the best treatment for hypothyroid patients…when it has clearly failed us for decades.

Thyroid patients find it “frustrating” that doctors don’t recognize the common occurrence of adrenal fatigue with hypothyroid, and their failure in understanding how to treat it.

And thyroid patients “aren’t thrilled” that doctors still seem to see themselves as demi-gods of their patients health, when in fact, the relationship should be a PARTNERSHIP. You do NOT live in our bodies.

So dear doctor, instead of bemoaning our use of the internet, which in fact saved ME from your incompetence as it’s doing millions of others, rejoice that your patients have had the balls and inclination to FIND answers via the internet. Because those answers are here. And the answers are not just for us, but for those of you who are open-minded and mature enough to LEARN from the internet. Because the internet is ultimately US.

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NBC, CBS, ABC, Oprah, Dr. Phil…you name it. YOU are NOT keeping up!

And to the list above, I can add any and all mainstream press media out there. Because you are ALL falling behind. There is a HUGE revolution going on among thyroid patients against DECADES of lousy treatment, and YOU are failing monstrously to see it and report it.

Instead, you believe and report hook, line and sinker the standard byline of medical news, as if what you report is the ONLY and BEST information there is (e.g. the news on Chronic Fatigue Syndrome mentioned below) and you seem to be blind as bats that there’s an outcry from millions of thyroid patients out there who are suffering due to an ignorant, rigid and malignant method of thyroid treatment with thyroxine medications and standard labs that do NOT reveal anything more than dried ink spots on a piece of paper.

So take heed. We are UNIMPRESSED with your deaf ear and dumb vision and monkey-says, monkey-do reporting. There is a LOT more going on than what the medical establishment is going to feed you. Millions of patients across the nation AND THE WORLD have been paying an appalling price for decades due to a contemptible method of thyroid treatment that involves a medication that has NOT worked, a TSH lab range that keeps patients hypothyroid, and rigid doctors who’d rather bandaid continuing hypothyroid symptoms with anti-depressants, statins, pain meds, and psychotrophic meds rather than open their eyes and think outside their Medical School Training Box. Stop the thyroid madness!

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Chronic Fatigue Syndrome could be UNTREATED or UNDERTREATED hypothyroid!

Though this post was first created in 2006, it’s been updated to the current day and time! Enjoy!

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…or Myalgic encephalomyelitis, abbreviated as ME, in Europe.

I remember when the term CFS was coined in 1988, even without a specific cause or marker. I remember when they surmised it was due to Epstein Barr Virus. 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.”

For years, I have listened to the symptoms of CFS/ME 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

And I personally KNOW that unrelenting and debilitating fatigue is real. I know that incapacitating fatigue is real. 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 CFS/ME or not.

BUT….to say that it’s a mysterious illness highly concerns me… for thyroid patients. We’ve had too many doctors proclaim CFS/ME when we presented our fatigue, yet the reality has been poorly treated hypothyroidism or Hashi’s, not a mystery.

And here are interesting facts for hypothyroid or Hashimoto’s patient who get this CFS/ME diagnosis.

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..the latter 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 ABOVE!!

I am bothered by the fact many hypothyroid patients who come onto the many thyroid-related discussion groups state they had the diagnosis of Chronic Fatigue Syndrome when they once were on T4-only medications and were dosed by the lousy 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/ME, or those who suffer from debilitating fatigue–I have been there. I know there are REAL diseases, real conditions, 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, mito problems, viruses, enteroviruses, retroviruses, Herpes Viruses, Lyme, Mold 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 or poorly treat hypothyroidism or Hashi’s..

I want to make it clear that I am not saying that “everyone” who is classified as having CFS/ME 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 poorly treated hypothyroid, and/or adrenal insufficiency…and have not done the correct tests or the right treatment to confirm it, and to help RELIEVE them of their misery. The evidence is simply too compelling.

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Dr. Skinner’s Fitness to Practice Hearing–a circus of shame

For those that don’t know….in June of 2005, Dr. Gordon Skinner, a private practitioner in the UK, was called before the General Medical Council to ascertain his “fitness to practice”. And why was he called before the board? Because of alleged “inappropriate clinical practice including maintaining medication for patients at dangerous levels and failures of communication with other medical practitioners.”

And might you guess what the “inappropriate” measures really concern? Namely, Skinner DARED to listen to his patient’s clinically presented thyroid SYMPTOMS, and dose by those symptoms, rather than her TSH labwork which fell in the erroneous normal range.

Further, Skinner was going to treat the patient without a referral letter from her GP, and may have failed to contact the GP. Heaven Forbid!!

The outcome of this absurb baboonery will not occur until July of 2007.

And the entire scenario makes me pause. In my inner ears echo the desperate and miserable cries of THOUSANDS of patients I have dealt with since 2002…patients who’s TSH was “normal” while their entire bodies screamed and pulsated with hypothyroid symptoms. Yet……..the medical school educated physician who’s brilliance falls to ink spots on a piece of paper pronounces his patient “normal”, figuratively pats her on her butt, and sends his patient on her ‘merry’ way with her sample box of antidepressants.

Cough.

This patient site exists EXACTLY because physicians have sent MILLIONS of us on our merry way, pronouncing our thyroids “normal” because of a so-called normal TSH, in spite of the fact that we have lived miserable lives with miserable symptoms while having a “normal” TSH.

How many doctors does it take to change a lightbulb? Ten. One to change it by noting that it’s not emitting light, and nine others to declare the first doctor unfit for daring to act on clinical presentations of a lightbulb that isn’t working.

Hang tough Dr. Skinner. Because millions of thyroid patients are behind you.

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