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- Fri Feb 10, 2006 3:22 pm
Gloria 38yrs, Female
surgeries, gallbladder removed, regular child birth, miscarried 2, hypothyroidism, metabolic syndrome, raynauds, adult ADD, allergies, IC, interstim surgery, Chronic Fatigue, blurred vision, Mild Adrenal Hyperplasia
Here is a good one for anyone to try and figure out. I have the following symptoms: tinnitus (non-stop), Raynauds (everyday), body temp of 95 degrees (even though I take T3 and T4), hypothyroidism, metabolic syndrome, chronic fatigue, always cold makes my legs, arms and hands blotchy and elbows and knees blue, sleepiness to the point that I can’t possibly stay awake, adult ADD (get so sleepy even after taking 30 mg of Adderall XR), loss of appetite, memory is terrible, (forget what I am doing most of the time) problems staying asleep, (even if I don’t nap during the day), problems with yeast, (take 150 mg of Diflucan once a week), no libido, problems reaching orgasm, allergies to yeast,grass,weed,birch, oak, dust, orange, lots of chemical sensitivities, dry skin, thin hair, poor nails, hair loss. anxieties, panic attacks (gone with the Adderall), faint pulse rate (even the nurses can’t seem to get it. so they use a machine for this), painful cramps before periods, hair on chin, thin eyebrows (from the middle to the end nothing much left) hardly any eye lashes, almost no underarm hair.
CT SCAN and diagnosis show one mildly large right side adrenal gland, left adrenal gland is of normal size, Mild Adrenal hyperplasia
Started 0.75 mg of Dexamethasone and my weight gain went from 150 lbs to 220 lbs during that time, even though I was taking T4 and T3 as well as Metformin. I couldn’t understand why I was gaining so much weight. Yes my allergies went away but I was still tired and irritated. A year later I saw my husband’s doctor (he was having reactions to Synthroid) he ran new tests and said I did not have mild Adrenal hyperplasia. I got down to 117 in about a year, when I stopped the Dexamethasone. Now I have all those symptoms above and am trying to see if maybe having this hyperplasia could be the result of almost all of these things, low cortisol? I have most all symptoms of Wilson’s Syndrome.
| Dr. Shank
- Sat Mar 11, 2006 6:04 pm
Dear ggladbach (Gloria):
At the risk of offending you, I can categorically rule out "Wilson's syndrome," because "Wison's syndrome" (not to be confused with Wilson's disease, or hepatolenticular degeneration) is purely fictional. Since "Wilson's syndrome" does not exist, there are no symptoms of it for you to have.
O.K. You are probably extremely skeptical about me, right now, after I just confirmed everything you have ever read in books and websites about how physicians do not recognize "Wison's syndrome." I hope, however, that the rest of my reply will ease your reservations about my competence.
The next easiest part of this reply is that adrenal hyperplasia should never be diagnosed from a CT, although a CT may suggest adrenal hyperplasia. Adrenal hyperplasia may be conveniently classified as the classical ("salt-wasting") form that is almost always detected in childhood and the milder non-classical form that is associated with early puberty and athleticism in males (but short stature and impaired fertility) and excess hair, masculinization, hypersexualism, and impaired fertility in women. Nearly all cases are due to a deficiency of an enzyme called 21-hydroxylase, and appropriate testing is based upon the levels or 17-hydroxyprogesterone before and after stimulation with cosyntropin. Unless I am very suspicious of the condition, I just check a single 17-hydroxyprogesterone level. If you doctor did the right tests, he will understand what all of that means! I rather doubt that you have congenital adrenal hyperplasia, because the adrenal gland's attempts to make enough cortisol results in build up of the hormones in the steps before cortisol, and those high levels of those hormones also results in the production of high levels of male-type hormones (androgens).
There are a lot of things that can cause lack of libido and problems reaching orgasm, but the lack of underarm hair suggests that these actually may be because you do not have enough of the male-type hormones. For women, sexual appetite and function are extremely sensitive to almost everything, so this might be just a nonspecific indication of the fact that you do not feel good. Then again, it could point to an as-yet undiagnosed problem.
You mentioned that you have "IC, interstim surgery." I am not sure what that means. Are you saying that you have interstitual cystitis? That is apparently a form of neuropathy (abnormal nerve function) and generally responds to the same drugs used to treat other forms of neuropathy. I would avoid the "antidepressant" class of drugs, however, unless you are depressed, because most of those will add to your sexual problems, and many may add to your weight.
Loss of the hair in the outer one-third of your eyebrows is a classic sign of hypothyroidism, and it is unlikely that a physician who did not recognize that fact would have a clue how to determine whether you do or do not have congenital adrenal hyperplasia, either. Prescribing T3 plus T4 pretty conclusive proof that a physician does not understand thyroid physiology.
Always being cold is also suggestive of undertreatment of your hypothyroidism, but could also be a manifestation of your Raynaud's syndrome.
Some of your other symptoms probably are due to Raynaud's syndrome. Raynaud's results in spasms in the blood vessels. Rarely, it is associated with other diseases, such as some of the rheumatologic conditions. It responds very well to low doses of a group of drugs known as dihydropyridine calcium channel blockers and another group known as alpha-blockers. If you cannot tolerate these drugs, nitroglycerin ointment works great, too, although it does have to be applied several times a day.
Fatigue is a common symptom of hypothyroidism, but can be due to a number of other things. Interestingly, you describe yourself as having adult ADD, and then go on to describe profound sleepiness and non restorative sleep. Since most cases of ADD are actually due to narcolepsy, other sleep disorders, or inadequate sleep, this may be a major clue. Adderall and a variety of other drugs are effective for "both" narcolepsy and ADD (guess why!), but consideration needs to be given to abnormal sleep cycles (the other part of narcolepsy, best treated with sodium oxybate=Xyrem), sleep apnea, restless legs syndrome (best treated with cabergoline=Dostinex), and the like. From your description, I suspect that you have significant problems with allergies, and these (plus your excessive weight in the past) could severely aggravate any tendency to obstructive sleep apnea.
You took a powerful glucocorticoid, dexamethasone, for a year. Current recommendations are that you only take it if you are a woman and you are pregnant or attempting to become pregnant. Since you took it for so long, yes, you probably developed some degree of adrenal insufficiency, and you may still need to take glucocorticoids when you have a major illness, major surgey, or other major trauma, even if you do not need them on a regular basis. The facts that you have lost your appetite and lost below your initial weight makes me concerned that you do need to be taking a glucocorticoid on a daily basis, even if you did not have adrenal insufficiency before your dexamethaxone therapy.
It is not clear from your posting whether or noty you have experienced the yeast infections without taking dexamethasone, but dexamethasone can cause problems with fungal infections, including yeast. People who suffer from malnutrition are also vulnerable to yeast infections, and you did say that you have lost your appetite and an enormous amount of weight. You also did not say where your yeast infections occur (vagina? mouth? esophagus? in the skin folds?), but these infections may be clues to other problems, such as diabetes (common), hypoparathyroidism (uncommon), glucocorticoid excess (common from therapeutic use of glucocorticoids, very uncommon otherwise--and, by definition, excluding congenital adrenal insufficiency), and polyglandular autoimmune disease type I (generally seen in children).
Infertility, including recurrent miscarriages, may be due to a variety of things, but hypothyroidism is a common cause.
More than one interpretation of your descriptions of some of your symptoms, are possible, but dry skin, poor nails, hair loss. anxiety, faint or slow pulses, and menstrual clots or heavy menstural periods would also suggest abnormal thyroid hormone levels, especially hypothyroidism.
A word about thyroid testing. I travel across the country, and I am yet to find a laboratory that has an acceptable range for thyroid stimulating hormone (TSH). According to the American Association of Clinical Endocrinologists and the American Thyroid Association, the "normal" range should be 0.3 to 3.0. Frankly, even in that range, I find that most people with a TSH that is persistantly above 2 are clinically hypothyroid and improve with higher thyroid hormone levels, and even 1.5 to 2.0 is suspicious of inadequate thyroid hormone levels, if persistent. TSH is popularly known as "the single best test" of thyroid function, but it is a lousey single test. I always check the free T4 (and sometimes other thyroid hormones, as well), and I also rely heavily on symptoms as assessed by standardized questions and on the physical examination. If a thyroid expert, such as I am, cannot rely upon the TSH alone, neither can non specialists.
In case you are still skeptical of my competence to say that "Wilson's syndrome" is a myth, I will now tell you a little bit about myself. I am an endocrinologist (and one of the few in the world who has also done a fellowship specifically in diabetes). I am President, State Chapter Chair, and member of the Board of Directors of the Ohio Valley Chapter of the American Association of Clinical Encocrinologists (AACE), representing Ohio, Kentucky, and soon to officially represent Indiana, as well. I have a Ph.D. in Physiology and Biophysics for original work on the hypopthalamic-pituitary- thyroid-peripheral tissues axis. I have advanced certifications in thyroid diagnosis and treatment.
By separate email, I am sending you copies of the standardized questionnaire that I developed for diagnosing and following my thyroid patients and another questionnaire that I developed for screening for a variety of sleep problems. I suggest that you complete them and take them to your physician.
Of course, I also strongly suggest that you find an endocrinologist (http://www.aace.com) in your area.
| Dr. Shank
- Sat Mar 11, 2006 6:14 pm
Dear ggladbach (Gloria):
I forgot to mention that the most common cause of tinnitus is fluid in the ears, usually as the result of allergies (from which you suffer), an upper respiratory infection, or abnormal functioning of the Eustachean tube that connects between the middle ears and the back of the nose. Sometimes, the fluid in the ears or in the sinuses (which are not directly connected to the middle ears, but also drain into the back of the nose) becomes infected, and this infection can become chronic. Chronic infection could also make you feel awful. Adults seldom get earaches, and any pain they do have is usually perceived in front of the ear or under the jaw. For reasons that are beyond me, these causes are seldom considered and even less frequently recognized, even by "Ear, Nose, and Throat" specialists. Another fairly common cause is damage to the nerve fibers in the middle ear, often as the result of previous infection or of exposure to loud noise. A rare, but important cause, is a growth on the cranial nerve that supplies the ears, known as an acoustic neuroma (because it is a tumor on the acoustic nerve).
I hope this helps you.