Hi dazed, I agree with carol on both points getting a second opinion and not overdoing it. My symptoms came on suddenly at 28 with drastic pigment loss and hyperpigmentation and fatigue, especially on stairs. My ANA was off and on elevated. My endocrine tests were all perfectly normal, though I met the criteria for polyendocrine deficiency. My liver function tests were elevated though and finally after a bunch of non-treatment and misdiagnosis I was diagnosed with Non Alcoholic Fatty Liver Disease, which causes a lupus like syndrome in much the same was as primary biliary cirrhosis, because your liver is where your histamines come from that produce allergic reactions. I was negative for anti ds-dna, anti-ssa and ssb, and some of the other stuff. I did have antibodies to my thyroid (called TPOs), very high level of them, though my thyroid function appears normal on bloodwork or only a little out of range at times, my thyroid does not work right and it is hurting me, though the bloodwork doesn't show it. They must test your anti thyroid antibodies as well as your thyroid (TSH, T3, T4) to properly dx a thyroid problem and you can ask for that to be tested by your local doc if you have any suspicions you might have a thyroid problem.
If you are overweight, like most people these days, esp. women, or are gaining weight, esp. around the middle that worries you, you might have your blood insulin tested. This is important because there is a real problem with something called metabolic syndrome x--also known as pre-diabetes, diabetic fatty liver, metabolic syndrome, diabetic hepatitis--and it is due to carbohydrate consumption when we were kids and through the years and also probably is hereditary. Up to 75% of people with liver complications from prediabetes will require liver transplants at some point in their life. Over 5 million people are estimated to have it in the us alone, and being overweight and not eating right causes it, though you can get it before you get overweight, like I did if liver disease and/or diabetes runs in your family and you don't know that you need to follow a certain diet for it.
I try to tell everyone about this because if you are overweight, you probably either have it or will get it, and dieting improperly can make it worse and you will never lose weight on a diet if you don't follow the right one for the condition. Testing your blood insulin, instead of blood glucose and other similar normal diabetes tests, will check to see if you are resistance to insulin (another name for the condition is insulin resistance) and it is possible to correct insulin resistance and avoid permanent diabetes or lupus like problems if you follow the correct diet as given by your doc, if you have this. It is extremely common and most people don't know they have it and doctors are only beginning to become aware of this huge epidemic that is occuring, and many don't know to test blood insulin.
You can also buy a diabetes test kit, they aren't too expensive, and test your sugars yourself frequently to see if you go high or low and see how this matches with your fatigue and other symptoms. Then you can talk to your doc about it. Diabetes test kits are helpful when dieting and exercising to make sure you don't stress your body out too much.
I'm not massively overweight and was really thin and in top athletic shape when I got sick and I went down fast. Due to my liver and body's failure to burn fat and constant storing of it in my liver, I got very sick and couldn't lose weight. Fatigue and numerous other strange illnesses, like I'd just get meningitis out of the blue, or pneumonia, and I developed asthma and COPD, these things all sprang from the liver disease. Eventually I may even develop anti-ds-dna, and it will be called secondary lupus because it was not hereditary for me but I developed it from another cause.
I also started out being hypoglycemic and probably hyperthyroid a little, because I was always very fit and energetic, then I completely shifted to the other way. This is normal.
There is medicine they can give you for metabolic syndrome (prediabetes or insuline resisteance, its all the same thing). I take glucophage and it is a diabetes drug that is unique because it treats both my high and low blood sugar, keeping it right in the middle at 100 usually, and it causes my liver to release the stored fats (from sugars and carbs) into my bloodstream to be burned like they were supposed to be, so it can actually fix my liver, they suppose.
I don't know if you've had your liver function tested but you need to get paper copies of all your lab work and keep it, this is important and you would want it for a second opinion anyway unless you want them to retest you. Many docs say your labs are normal even if your liver enzymes are elevated figuring you are just an alcoholic or drug addict or if you are overweight, and they won't even tell you. You need to know. My doc told me if any of my liver tests is twice the highest normal value I need to see him right away, if you don't know if you have a problem, if any are elevated more than once I would definitely ask one of your docs if they think you might have prediabetes or fatty liver.
I'm so sorry this is so long, but whenever I hear someone starting out like me, with everything normal but feeling really bad, I feel I should let you know about this very very very common problem among the overweight and some thin people with bad genes! Overworking yourself can make this worse.
I think a simple blood insulin test should be a part of everyones normal bloodwork twice a year at least, but who am I. Because of the problem with metabolic syndrome, I think that you are going to see this test begin to be done more and more as part of routine labs. Also, get your liver functions and see for yourself if they are elevated. If they are, try to see a hepatologist (liver specialist) or a good gastroenterologist. Unfortunately when I was young, the disorder was newly discovered, hotly debated, and most docs thought fat in the liver didn't cause any problems, nor did high insulin. Now they know and you can nip this in the bud if you have it and maybe actually get healed or at least know and know what to do to prolong your life and feel better. Do some Googles on fatty liver, NAFLD (non-alcoholic fatty liver disease), NASH non-alcoholic steatohepatitis, prediabetes, insulin resistance. Both the Atkins diet book and web site and there is a diet book called the insulin resistance diet book all talk about this condition and what tests you should request from your doctor if you feel the symptoms fit you.
I was told everything was in my head and I was depressed. But for me, I knew, depression doesn't cause pigment loss or hyperpigmentation, or rapid and stubborn weight gain or asthma. These things are real, not in my head. And the fatigue was real. So don't give up and please at least give a glance at some of this stuff and ask your doctor if this might be a possible cause for your fatigue and request a blood insulin test, a glucose tolerance test won't show insulin resistance necessarily if you are just beginning to get it. The blood insulin is the key, I think. Also, they can do an abdominal ultrasound with a baby ultrasound machine and it is very effective for looking at many things including fatty liver, but usually they only do this if your bloodwork is bad.
Please, if you have friends or family members that are overweight and unable to lose no matter how they try, you might pass on this info if it doesn't fit your situation. I am living proof that it can make you very ill and many family members have it and are very sick and some have died very young and tragically, not even knowing they had any liver problems at all.
Well, don't give up. I look forward to hearing more from you dazed and will keep you in my thoughts and prayers. It took me 13 years for a really good dx of everything.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments