Discussions By Condition: I cannot get a diagnosis.

Don't know where to turn...

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: northwestmom
  • December 8, 2008
  • 09:49 PM

I have felt super fatigued for a number of years, but my doc always seems to brush me off. Had a naturopath who put me on thyroid meds (armour and cytomel) for a few years and felt better than I have felt in my entire life. Unfortunately, he is no longer around.

Lately I have felt so tired (as if I have 1 foot in the grave only someone forgot to tell my body to lie down) that I can barely function. I am completely unable to lose weight (5 weeks following South Beach *very* strictly resulted in a whopping 1/2# total loss). I am cold all the time (my "normal" body temp is 97.8°) ~ sometimes I feel numb I am so cold. When I wake up in the middle of the night, I can't fall back to sleep for sometimes hours so I take an OTC sleeping pill *every* night. Joint pain in my left elbow (sometimes it is painful to lift a full cup of coffee). Brittle hair. Tender abdomen on my right side (low). 40 years old but have only had maybe 6 periods in that past 3 years. Feel "foggy" and forget stupid things I shouldn't be forgetting. If/when I exercise, the aches and pains do not go away (exercised for 3 weeks straight and felt worse by the day, like I'd been hit by a Mack truck).

I have been to see my regular doc plus 2 endocrinologists (thinking thyroid). Labs always come back "normal" and I have been told that it is all in my head OR it is because I have small children at home (um, they are 8 and 11... not exactly small or helpless).

Just saw a new doc (a P.A., actually) about 2 weeks ago. Spoke to him Friday. He said labs are normal (big surprise) and he thinks I am in perimenopause. Pelvic ultrasound shows right ovary slightly larger than left, but still within "normal" limits. He is concerned because labs showed a "slightly elevated liver enzyme" level. I did not ask how elevated. He thinks my issues are sleep related and wants me to do a sleep study (according to my husband I don't snore). He also wants me to see a liver specialist or gastroenterologist. The last PA I saw prior to him (she quit before I had my follow-up) did labs shows I tested positive for EBV and parvovirus but even with this knowledge, he didn't do anything about that. His attitude is that I need to lose weight, that it is my weight probably causing the liver enzyme elevation (I am about 70# overweight). Scale is climbing. If I diet, I maintain my weight ~ very disheartening! I feel like I am stuck and I don't know who to talk to about this. I just wish I could find a good physician who can get to the bottom of things.

I don't know if this information helps... I am a casual drinker. Maybe 1-2 glasses of wine 2-3 times a week (often less than that). My grandmother, mom, her twin sister, and both uncles have ALL had issues with elevated liver enzymes that no one has been able to figure out. At one point, my uncle's doctor told him to go home and get his affairs in order and immediately go to the hospital. That was about 5 years ago, he is still living. I don't know if it is something that could be hereditary, but the family is frustrated because it has been our experience that the doctors look at you and treat you as if you are a closet alcoholic and are just not willing to admit it.

I WANT to lose weight... I cannot, though. I gained weight on NutriSystem. I maintained on Weight Watchers, Diet Center, and Slim Fast (and most recently South Beach). I need help.
:( Kris :confused:

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9 Replies:

  • sounds like my mother -in-law. she has Fibromyalgia . She can go days feeling OK then in bed for days. pain in joints, fatigue, flu like symptoms sometimes. exercise is supposed to help but only makes it hurt more. can not loss weight. she is not over weight in my opinion. maybe 150lbs. no diet will help her either. good luck to you.
    tnmom1974 5 Replies
    • December 10, 2008
    • 09:47 PM
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  • I have wondered about that myself. Unfortunately, the two physicians I have seen locally (*very* small town), basically have said they "don't buy into the fibromyalgia hoopla". What in the world? Anyway, maybe I just need to find myself a better doc. I was even contemplating making an appt at a Fibromyalgia and Fatigue Center, but I wasn't sure if they were really legit since they aren't recognized by my insurance and they don't bill any insurance companies. Kris
    nwscrapmom 3 Replies
    • December 13, 2008
    • 05:27 AM
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  • Fibromyalgia is a real condition. I used to think it was "all in a person's head" but I have seem what it can do to a person. I found some info for you. from webmd:Fibromyalgia Diagnosis and MisdiagnosisBecause of a multifaceted treatment approach that involves medications and lifestyle strategies, the prognosis for people with fibromyalgia is better than ever before. But first, a doctor needs to make an accurate diagnosis of fibromyalgia. Are you wondering how that's done?Unfortunately, fibromyalgia is regularly misunderstood. Despite all the latest information about fibromyalgia with its severe muscle pain, unrelenting fatigue and sleep problems, and feelings of anxiety and depression, doctors are still misdiagnosing this common pain disorder. As a result, some patients are getting a diagnosis for the wrong condition -- for example, chronic fatigue syndrome, arthritis, or some other pain problem.What is fibromyalgia?Fibromyalgia is a syndrome (FMS) with multiple symptoms that commonly occur together, including widespread pain, decreased pain threshold or trigger points, incapacitating fatigue, and anxiety or depression.Why is diagnosing fibromyalgia difficult?It takes on average five years for a person with fibromyalgia to get an accurate diagnosis. Some people go from doctor to doctor without receiving a medical diagnosis for their fibromyalgia symptoms. Many wonder if their painful symptoms are simply imagined.There are no scientific measures, such as laboratory tests or x-rays, that "prove" you have fibromyalgia. In the past, millions of fibromyalgia patients were misdiagnosed as having depression, a type of inflammatory arthritis such as rheumatoid or lupus, chronic myofascial pain, or chronic fatigue syndrome. There are, of course, a few similarities between fibromyalgia and chronic fatigue syndrome or fibromyalgia and arthritis. But fibromyalgia is different. It is a distinct condition that needs an accurate diagnosis and appropriate treatment.What tests will my doctor use to diagnose fibromyalgia?Most laboratory tests are not very useful by themselves for diagnosing fibromyalgia. Your doctor will come to a diagnosis after doing a physical examination and discussing your symptoms with you. The reason for this is that a diagnosis to large extent is based on the way you feel. For instance, even though your doctor may notice trigger points during the physical examination, you still need to tell him or her about the pain you feel in those areas.Your doctor will use a few laboratory tests to make sure you don't have a more serious medical condition. These tests can probably be done during one visit to a laboratory.What specific tests will my doctor ask for?Among the specific blood tests that your doctor may order is a complete blood count (CBC). This test measures the hemoglobin, red cells, white cells, and platelets. It can also find many common blood disorders -- such as anemia - that can cause fatigue.Your doctor may ask for tests -- including kidney and liver tests -- that check blood chemistries. Your doctor will probably want to know the level of cholesterol and other fats in your blood, calcium levels, and more. In addition, your doctor may run thyroid tests to see if your thyroid is overactive or underactive.
    tnmom1974 5 Replies
    • December 13, 2008
    • 10:28 PM
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  • Your story sounds familiar. I went to doctors for six years and heard many variations of the "it's-in-your-head" routine. Get someone to run an ANA test on you. This could show up an autoimmune disorder, which is quite likely. Even if the ANA is negative, you should see a rheumatologist. The answers are out there, but a GP or PA is not likely to have them. All the best!
    Marmotte 1 Replies
    • December 14, 2008
    • 06:57 PM
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  • For all of you who have fibromyalgia,Lyrica is the drug of choice for it.
    richard wayne2b 1232 Replies
    • December 14, 2008
    • 08:03 PM
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  • Hi, I have increased my health and energy by the following: -No processed packaged, canned, jarred, food or drink.(pop,fruit juice, booze, limit or quit coffee,(both booze and coffee tax the liver heavily) no bread, no milk products, nothing made with soy! basically; if it has a shelf life of longer than 5 days, don't eat it)-nothing deep fried, no more hydrogenated vegetabe oils, use "pure virgin coconut oil (coconut oil does not breakdown when heated to cooking temperatures, therefore does not become toxic like all other oil do when heated) and olive oil for cooking and melt to pour over salads and veggies or use in place of butter on spuds, yams, sweet potatoes, squashes etc.-No chemicals on my skin, hair, clothing (hair care, skin care, cosmetics, hair color,household cleaners, laundry cleaning or air fresheners. (Try pure virgin coconut oil for moisturizer and body wash, beautiful!)-organic meat only-drink water/ beverages 1/2 hour before or a 1/2 hour after meals(so's not to dilute digestive juices)-no less than 8-8oz glasses water daily, don't count tea or other drinks as part of the 8 glasses, these will be in addition to ...(you can survive for a long time with no food, but not for long without water, our bodies are 80-90% water, our bodies are made of cells, cells do special jobs, if they're half dead from dehydration, they cannot do their jobs, cells mutation and death begin followed by chronic disease.)If you start to notice mild muscle cramping, up the intake of "pure unprocessed sea salt" moderately, especially if you are now, not eating sodium loaded processed food.-don't buy cheap drugstore/grocerystore supplements, you get what you pay for!-take spirulina and chlorella (wholefoods supplements with many trace elements, naturally occurring vitamins, chlorophyll, protein, iron and so much more (make sure it's organic)-if you go for a probiotic, make sure the capsule ingredients are free of "titanium dioxide & magnesium stearate" both cause a biofilm to grow in the intestines stopping absorption nutrients and minerals!-find out if any of the vitamins you are going to purchase are synthetic, alot of them are, a pharmacist should be able to tell you, or better yet, go to the vitamin manufacturers site and find out for yourself-take a high quality "Krill Oil" for the omega 3 fatty acids that are so important to our health. Cell health is dependant on it and sadly our natural ways of getting it, by eating salmon and other deep sea fish are too cntaminated with mercury and pcb's etc.-try to buy organic produce, if not, wash it very well to remove pesticide residue.-eat lots of dark green leafy veggies, lots of brightly colored veggies, eat fruit moderately and alone.-eat organic unsalted, roasted almonds, raw pumpkin, sunflower, sesame seed-if you decide to go all vegetarian because you cant find organic meat, eat lots of lentils, peas and beans (organic if you can) easy to cook and have lots of protein (cheap too) rinse well, soak over night of just cook for a few hours and keep adding water (no salt while cooking, it alters the salts' molecular structure and becomes toxic) Fry up a pan full of onions, garlic, celery seed and celery in coconut oil, dump it in the pot full of peas, beans or lentils, cook on low another hour, serve up and salt to taste, absolutely delicious and extemely nutritious, and combined with some lightly steamed or raw veggies or a salad, an excellent food combination!-don't over eat, the poor liver, if it's functioning poorly from a poor diet, it is not going to be able to produce enough bile to digest a normal amount of food, let alone if we stuff our stomach real full, without enough bile, food will rot and ferment in the stomach and intestines, that will lessen the amount available to the cells because big chunks of undigested food can't pass through the intestinal wall.-after eating good whole food and drinking sufficient water for a month or two, do some liver and kidney cleanses (I personally recomend Andreas Moritz "The liver and gallbladder miracle cleanse") -don't over exercise, it's ******n the heart, walk a 1/2 hour to an hour a day or every second day, just make sure you do enough to help the Lungs (air exchange system),cardiovascular system(air and nutrient delivery system), lymphatic system (garbage pickup and disposal system), muscular (muscle needs to be worked in order to keep toxins from building up)and digestive systems (the food processing system that brings the food we eat, to a state where it can be absorbed through tiny perforations in the intestinal wall), they all depend on good circulation from exercise to do their jobs, so we can be healthy.-don't eat for at least 2 hours before bedtime,(during the night is the body's assimilating stage, it's using and processing the food you ate today, if you give it more before bedtime, it's going to be doing 2 functions, digesting and using, ever wonder why you feel sluggish and hard to get going in the morning if you had a big snack the night before?)-and get enough sleep, at least 7 hrs a night, preferably before midnight if possible( the body's optimal assimilation, rest and repair time)-If you follow the above, you will have abounding energy. -If you've been feeling a bit/alot of depression or felt agitated/irritated for no real reason, if you've been suffering heartburn/indigestion, if you've been craving something and going back and forth from the fridge to the pantry, even after eating a meal not too long before, if you don't have normal bowel movements (1-3 per day), if your mind seems to often feel in a fog, if you have poor short term memory, if you have trouble concentrating or focusing, if you have stomach aches, back aches, headaches, feel run down alot of the time, if you've got to have a nap after eating and you'd rather have energy to clean up the dinner mess and then go for a walk..........-you may be pleasantly surprised when all the above ailments and inconveniences slowly diminish because you body is getting the basics:nutrients, hydration, rest, elimination of toxins and waste and protection from further exposure because of not eating nutrient deficient, chemical laiden non-food and keeping the chemicals out of our lungs, off our skin by not using chemicals body/haircare and cleaning supplies.-by eating this way, you will keep your body's acid/alkaline balance proper, over acidity from western cuisine makes an acid environment that cells can't do their jobs in and makes a great breeding grounds for disease.-the above way of eating can also help shrink uterine fibroids that can cause heavy non-stop bleeding-men with prostate problems would benefit greatly from this way of eating, shrinking the size of and maybe even reversing prostitis.-I am just your average joe woman, happily married, 46 yrs old, kids are grown and I thought, great! Now I have time to do some things I've always wanted to, but I have no energy and I feel like sh*t-But...not any more, I feel great, I hope you try this life style change, you will be so glad you did, . What it comes down to is, we are bing poisoned by the food we eat and the stuff we use in our homes every day! And big rich companies are getting rich while we get sicker, then, enter the money loving pharmaceutical companies, and we get sicker while they get rich now. -any body interested in where I did my research or would like to know more about how I got back to true health: e-mail me koningklan@telus.net
    Anonymous 42789 Replies
    • December 15, 2008
    • 04:39 AM
    • 0
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  • I thing you should repeat the T3,T4(free fractio!!!) test and do the Antithyroid antibodies test and Saliva cortisol test.I belive there are 2 separate conditions which affect you;one involving the Thyroid hormones(Hypothyroidism or Hashimoto`s Thyroiditis) and another one causing the muscle pain (Cushing`s sindrome,Fybromialgia etc)
    Anonymous 42789 Replies
    • December 15, 2008
    • 04:09 PM
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  • I have to ask the question, "What is fibromyalgia"? Then I have to try to answer it: I have read about it, and I know that it was not even recognized as a medical condition until just recently. To me, common sense would have it that, it was not recognized because there was no one set of symptoms/signs that it could be identified by, (symptoms/signsthat repeatedly surfaced in patient after patient.) Hence, (I beleive) the, "it's all in your head" responses(etc.), to sufferers. I, after spending less than 1 year(as outlined on my first post), have lot's of energy, and since I've been drinking water every day, a whole host of signs and symptoms have been disappearing one by one. I think we are just saturated with chemicals and toxins. We've got to get the garbage out of our diets and off of our skin! I be if we took a mcg of every chemical we are exposed to on a daily basis, put it in a bowl, put a healthy frog or some critter like that in it, the frog would get lethargic, then it would get sick, then it would probably die from cancer, or renal failure, or high blood pressure, or liver/kidney failure. I think everyones first test should be getting back to basics in our diets, body care products, water drinking habits, resting/sleeping habits, and exercise habits (enjoyable walking exercise that we may look forward to, not tongue hanging out, gasping for air, dreading it the next time exercise). I just think a common sense approach could do so much, and actually make Doctor's jobs easier because they won't have so many signs and symptoms to sort through when a person does succumb to an illness or disease. To all our health, A
    healthmonger 4 Replies
    • December 16, 2008
    • 11:28 PM
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  • Thanks for all your responses. Marmotte ~ I think I am going to see if I can get in to see a rheumatologist. He did say I don't have Lupus... but I don't know if that is the ANA test you are referring to or something different. Med Stud ~ perhaps I should try a different doctor/lab to do those tests? He just did them about 3 weeks ago... I don't know if I could convince him to re-test those certain items you mentioned. Thanks again!
    nwscrapmom 3 Replies
    • December 17, 2008
    • 00:25 AM
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