More adventures in Thyroidland

Jefferson University Hospital

I met with my new endocrinologist yesterday, and he told me whatever’s wrong with me, it’s probably not my thyroid. The problem, he said, is that I have a lot of nebulous symptoms and that a myriad of things cause fatigue and muscle weakness.

“Look at me: I have every major symptom of hypothyroid — except I’m not hypothyroid,” he told me. “You have a lot of symptoms, but that test is really very accurate, and according to the test, your TSH levels are in the right place.”

We talked about going gluten-free. He said there was one study that strongly indicated it helped — and then there were three studies after it that showed no connection. “If you want, you can give it a shot. Some people say it makes them feel better. But the only way we’d know for sure if it helps is to do a really big study, and no one’s going to fund that,” he said.

He’s going to test my adrenals, and he asked if I wanted to try natural thyroid instead of synthetic. “A couple of my patients feel better on it, but my guess is that your exhaustion has more to do with sleep apnea than your medication.”

While he didn’t have any solutions, he did listen and didn’t treat me like an idiot. So that’s an improvement.

6 thoughts on “More adventures in Thyroidland

  1. Most people, with the exception of Einstein perhaps, require at least 7 hours of non-stop, uninterrupted sleep. Regardless of ones age. “Sleep apnea.”

  2. Do you have apnea? If so, you need to be on a CPAP machine, it has made a serious difference in my life. If your body isn’t getting to the 3rd and 4th levels of sleep, it can’t repair itself or get the necessary rest, which can lead to fatigue.

  3. Lyme. Disease. Check out the comprehensive symptoms list (the symptoms are varied and numerous) and see how many you have – a friend of mine did just that and it convinced her to see a Lyme Literate Physician – she is now finally being treated after YEARS of nebulous symptoms! Don’t go for the first blood test, insist on a WESTERN BLOT immediately.
    http://www.lymepa.org/html/symptoms_list.html

  4. Additional Info: Some people do not notice early indicators of infection (especially those who do not get a rash). Early manifestations usually disappear, and disseminated (other organ system involvement) infection may occur. General symptoms alone do not indicate Lyme disease.
    GENERAL
    Profound fatigue, severe headache, fever(s), severe muscle aches/pain.
    BRAIN
    Nerve conduction defects (weakness/paralysis of limbs, loss of reflexes, tingling sensations of the extremities – peripheral neuropathy), severe headaches, stiff neck, meningitis, cranial nerve involvement (e.g. change in smell/taste; difficulty chewing, swallowing, or speaking; hoarseness or vocal cord problems; facial paralysis – Bell’s palsy; dizziness/fainting; drooping shoulders; inability to turn head; light or sound sensitivity; change in hearing; deviation of eyeball [wandering or lazy eye], drooping eyelid), stroke, abnormal brain waves or seizures, sleep disorders, cognitive changes (memory problems, difficulty in word finding, confusion, decreased concentration, problems with numbers) and, behavioral changes (depression, personality changes).
    Other psychiatric manifestations that have been reported in the scientific literature include: panic attacks; disorientation; hallucinations; extreme agitation; impulsive violence, manic, or obsessive behavior; paranoia; schiziphrenic-like states, dementia, and eating disorders. Several patients have committed suicide.
    EYES
    Vision changes, including blindness, retinal damage, optic atrophy, red eye, conjunctivitis, “spots” before eyes, inflammation of various parts of the eye, pain, double vision.
    SKIN
    Only 50% of those infected ever get a a rash. Rash not at the bite site (EM) – This skin discoloration varies in size and shape; usually has rings of varying shades, but can be uniformly discolored; may be hot to the touch or itch; ranges in color from reddish to purple to bruised-looking; and can be necrotic (crusty/oozy). The rash may develop a bull’s-eye rash or target look. The shape my be circular, oval, triangular, or a long-thin ragged line.

    Other disseminated skin problems include:
    lymphocytoma, which is a benign nodule or tumor, and
    acrodermatitis chronica atrophicans (ACA) which is discoloration/degeneration usually of the hands or feet. (I HAD AN ACA RASH and a podiatrist told my I had Raynaud’s Disease, told me to stand outside barefoot in a bucket of cold water in January to “retrain my capillaries”)
    HEART and BLOOD VESSELS
    Irregular beats, heart block, myocarditis, chest pain, vasculitis.
    JOINTS
    Pain – intermittent or chronic, usually not symmetrical; sometimes swelling; TMJ-like pain in jaw.
    LIVER
    Mild liver function abnormalities.
    LUNGS
    Difficulty breathing, pneumonia.
    MUSCLE
    Pain, inflammation, cramps, loss of tone.
    STOMACH and INTESTINES
    Nausea, vomiting, diarrhea, loss of appetite, anorexia.
    SPLEEN
    Tenderness, enlargement.
    PREGNANCY
    Miscarriage, premature birth, stillbirth, and neonatal deaths (rare). Congenital LD has been described in medical literature.
    It is possible for the bacterium to pass from mother to fetus across the placenta, resulting in congenitally acquired LD. A link between LD and adverse outcomes in pregnancy is under investigation. However, most studies show that mothers who are promptly diagnosed and treated appear to have perfectly normal babies.
    Nursing women with LD often call to ask us whether they should continue nursing. There has been no proved cases of transmission through human milk. There is research that demonstrates that Bb can be found in the colostrum of infected cows and mice. Animals studies have demonstrated that ingestion of Bb can result in infection. Some physicians recommend nursing mothers discard breast milk during active infection. Breast feeding can resume after treatment is completed and the woman becomes symptom-free. The decision to do so should be discussed with your physician.

    How is Lyme Disease Diagnosed?
    There is no test that can determine if a patient is infected with the LD bacterium and then demonstrate that the patient has become bacterium-free. Therefore, LD is clinical diagnosis, based on signs and symptoms, with the patients travel history to endemic areas and test results being additional pieces of information in the complete picture. No test can “rule-out” Lyme disease.

    WHAT LABORATORY TESTS AID IN THE DIAGNOSIS?

    INDIRECT TESTS (Antibody Tests)

    Antibodies are the immune system’s response to “fight off” infection. Tests strive to be both sensitive (detecting any LD antibodies) and specific (detecting just LD antibodies).

    Test Interpretation

    False Negative tests occur due to defects in test sensitivity; too low an antibody level to detect (e.g. they are bound to the bacteria, with too few free-floating; the patient taking antibiotics or other drugs; naturally low antibody production); the bacterium has changed, limiting recognition by the immune system; or bacterial strain variations.
    False positive tests occur due to test failure or cross-reacting antibodies (e.g. syphilis, periodontal disease, ANA or RF).
    Types of Tests

    Titer (ELISA, EIA, IFA) – These tests measure the level of Bb antibodies in fluid. Laboratories use different detection criteria, cut-off points, types of measurements, and reagents.
    Western blot – This test produces bands indicating the immune system’s reactivity to Bb. Laboratories differ in their interpretation and reporting of these bands.
    C6 Lyme Peptide ELISA – identifies antibodies to a consistent surface protein that is present on every known strain of the Lyme disease bacteria, Borrelia burgdorferi (Bb). The C6LPE is more sensitive for diagnosing all stages of Lyme disease, including those patients with late stage Lyme disease.

    DIRECT DETECTION TESTS

    Antigen detection – These tests detect a unique Bb protein in fluid (e.g. urine) of patients. This may be useful for detecting LD in patients taking antibiotics or during symptom flare-up.
    Polymerase chain reaction (PCR) – This test multiplies the number of Bb DNA to a detectable measurable level.
    Culturing – Growing the bacterium in culture is difficult and can take months.
    Staining – Staining of tissue is time consuming and has low yield. The problem is that in Lyme disease there are too few of the Lyme spirochete in the body, and could result in the biopsy having no bacteria.

    How is Lyme Disease Treated?
    Treatment varies and depends on how early a diagnosis is made and the organ system(s) involved. No definitive treatment regimens have been determined, and failures occur with all protocols.

    Oral antibiotics may be sufficient for early stages of non-disseminated infection.

    Long-standing or Disseminated Lyme Disease responds best to one or several courses of either oral or intravenous antibiotics.

    Physicians and researchers agree that it is unethical not to treat people with demonstrated, persisting infection. Therefore, some people receive retreatment or longer treatment.

  5. It may not be a bad idea to try gluten-free diet. Some alternate health sites highly recommend Gluten-free diets for various conditions. It is worth remembering that “conventional” doctors don’t get much training in nutrition/dietary approaches to healing. So take your doctor’s advice with a grain of salt.

    My friend had surgery once to fix the sinus issues years back and then it came back again. she had a hunch , did some allergy test and found she is allergic to Gluten. Her doctor didn’t suggest that. Now if she adds Gluten, her problem comes back.

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