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Letters From Our Readers - Q & A Session 4-11-07

  [ 782 votes ]   [ 1 Comment ] • April 9, 2007

Why Don’t Doctors Know About This Research?

Q: The article by Dr. Kent Holtorf ["Kent Holtorf, MD, On Treating Chronic Fatigue Syndrome & Fibromyalgia"] was very interesting, but it doesn’t address a problem I ran into when I tried to talk to my doctor and an endocrinologist about thyroid issues. I’ve had an under active (or non-existent) thyroid all my life – they’re not sure which. When I first read about the work that was being done with hypothyroidism by a doctor in Colorado, I asked my PCP about it. She dismissed it and said my thyroid tests showed my thyroid [level] was right where it was supposed to be because that’s what my TSH [thyroid-stimulating hormone] tests showed.

I asked for and received a referral to an endocrinologist. I was sure I could get him/her to understand that this thyroid theory might be the answer to my weight problems, as well as my Fibromyalgia. No such luck. He also dismissed the research and said the TSH test showed I was getting enough thyroid and there was no way he would ever prescribe a different dosage to try an experiment.

Is Dr. Holtorf’s research anywhere near being accepted by mainstream physicians? It’s heartbreaking and really, really frustrating to know that there may be a treatment capable of making me feel better, but I’m unable to take advantage of it. - Susan

A: Dr. Holtorf has written an article, featured in this issue of the newsletter, explaining why it takes so long for new research to be accepted by many mainstream physicians. (See: “Why Doesn’t My Doctor Know This?”) He also said, “I would recommend Susan ask her endocrinologist, ‘If someone has central hypothyroidism, can the TSH be used to determine appropriate thyroid levels?’ I would hope the endocrinologist would say “no,” as this is accepted to be the case in even basic endocrinology texts.”

Dr. Holtorf then referred to a study which indicated that 100 percent of FM patients have central hypothyroidism (Neeck G and Riedel W, “Thyroid Function in Patients with Fibromyalgia Syndrome,” Journal of Rheumatology, 1992; 19:7; pp. 1120-1122) and said that, in your case, it is inappropriate to use the TSH to determine the proper thyroid replacement dose. He also added that the TSH is unreliable if someone is overweight. (Look for more on these topics in future issues.)


How Can I Coordinate Treatment?

Q: I have hypothryoidism, Hashimoto's thyroiditis, and CFS. I also have Multiple Myeloma, diabetes, peripheral neuropathy in my feet, some arthritis in my knees, hips and lower back, and 2 "puffy discs" in my 4th and 5th lumbar. Is there any way to coordinate treatment for all of these conditions?… – Kathleen

A: It can be quite a job to coordinate treatment for a number of illnesses; however, it is absolutely essential that you do so. Ideally, your general practitioner or family physician should be the central location where copies of all your tests and reports from specialists are collected. He should also have a complete list of all medications you take. Unfortunately, most doctors today are so overloaded that expecting them to follow up to make sure they have those copies is probably unrealistic.

Ultimately, the management of your healthcare is up to you. You have a right to copies of your medical records, including all reports and the results of any lab work or other tests that are done. One good way to keep up with everything is to use a large three-ring notebook. You can use dividers to separate information by specialty (i.e., endocrinologist, rheumatologist, neurologist) or by type (i.e., lab work, tests, office visits, treatments). Whenever you go to any doctor, take your notebook with you so they can make copies of any information they need. This can also save you money by not having to repeat tests that have already been done by a different doctor.


Info on Spinal Stenosis?

Q: I would like info on spinal stenosis. – Jim

A: Spinal stenosis is a narrowing at one or more points in the center of the spine that creates pressure on the nerves/spinal cord and can cause pain. MedlinePlus is an excellent resource on this topic, offering links to a wide variety of information about spinal stenosis that was put together and reviewed by the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases at


What’s the Difference Between CFS/FM and MS?

Q: I have suffered for several years and secretly believed I had MS [multiple sclerosis]. I see many places where CFIDS and MS symptoms mimic each other. What are the main differences in MS and CFIDS/FM/Epstein Barr symptoms? I have been to many specialists and finally told the last one what I suspected I had but he assured me that I did not have symptoms of MS. What is the difference? – Susan

A: You’re correct in your observation that CFS, FM, and MS have many symptoms in common. There are, however, some differences. One of the most significant differences seems to be in the timing and duration of symptoms, particularly at the onset of the illness. MS symptoms tend to flare for a short period of time (like a day), then disappear for a month or more before they flare again. With CFS and FM, although some days are better than others, most symptoms are evident on a daily basis.

According to the Mayo Clinic, MS symptoms may include:

  • Numbness or weakness in one or more limbs, which typically occurs on one side of your body at a time or the bottom half of your body
  • Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
  • Double vision or blurring of vision
  • Tingling or pain in parts of your body
  • Electric-shock sensations that occur with certain head movements
  • Tremor, lack of coordination or unsteady gait
  • Fatigue
  • Dizziness

In some cases, people with multiple sclerosis may also develop muscle stiffness or spasticity, slurred speech, paralysis, or problems with bladder, bowel or sexual function. Mental changes, such as forgetfulness or difficulties with concentration, also may occur.

Your medical history also gives your doctor clues to help determine whether your symptoms are CFS, FM or MS. Other signs of MS that your physician would detect during a physical exam include:

  • Altered eye movements and abnormal responses of the pupils
  • Subtle changes in speech patterns
  • Altered reflex responses
  • Impaired coordination
  • Sensory disturbances
  • Evidence of spasticity and/or weakness in the arms or legs.

Note: This information has not been evaluated by the FDA. It is for general information purposes only and is not intended to be construed as medical advice, or to prevent, diagnose, treat, or cure any condition, illness or disease. It is very important that you make no change in your personal healthcare plan or regimen without researching and reviewing it in collaboration with your professional healthcare team.

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Article Comments Post a Comment

Why Don’t Doctors Know About This Research?
Posted by: readhed
Apr 11, 2007
I, too, have had thyroid problems all my life (have FMS). Was unable to get treatment from HMO endocrinologists for *decades*. I finally got treatment from a good endo. It's not enough to see an endocrinologist. One must see a *good* endocrinologist. Try asking a good doc you know (from any discipline) and s/he may have a network that eventually leads you to a good, compassionate endocrinologist. IMHO thyroid disfunction greatly exacerbates our symptoms. Good luck. ELK.
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