Another Dead End

Hi all,

I just got the results of my lab work from the Rheumy and they were all negative.(Called, did not see him) My earlier ANA's came back positive, but now they are negative.  OK, where do I go from here?  I asked his nurse and she said he will want to run another series of blood work in a month.  I am taking a stress test next week to make sure all is well in the heart dept.

I have changed my eating habits and began a walking routine to strenghten myself and I can say it is beggining to work.  Although I still tire easy, I feel great afterwards (mental and physical). Since the Doc's can't find what made me so sick I am taking matters in my own hands and doing what I can to help myself. I am hoping to be strong enough to return to work in Dec.

I am just so very scared of getting sick again with this "Unknown illness" that incapacitated me for 2 months.  Should I seek a second opinion from a Rheumy as many of my symptoms were that of Lupus?  I am so confused.  I know I will get great feedback and am anxiously awaiting.

Thanks

dazed

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.

Thanks for all of the info. My family all has diabetes and my father died from complications from the disease. I will research this info and talk to my Doc. I must take the advice given here and do not overdue it. I have a tendency to go full steam ahead and then burn out. Moderation is the key. I never ever want to feel as sick as I did. (it still would nice to get a dx to known what and what not to do to prevent a relapse).

Serenity to all

dazed

Hi Lynnwood,
I'm just going by what my rheumy told me and from what I've thought, it was always considered to have a congenital factor to it in most cases. I did find quite a bit of new info on lupus and interferon alpha, which was predictable for me because IFNA caused a lot of my problems and has been documented to cause SLE. Now, there are some breakthroughs on that front using IFN-A levels as a predictive tool to determine if family members will develop SLE. There was some new stuff about HCV and lupus, with HCV as a trigger causing SLE to develop. Anything developing as a result of another disease in medical terminology is usually considered to be secondary, as in secondary sjogrens vs primary sjogrens or secondary osteoarthritis and primary osteoarthritis. lupus.org had interferon listed in the table for DILE and they may want to change that because the effects of interferon alpha therapy have been found to be permanent in many cases, including the development of SLE. They may want to look at that outdated info in light of the numerous medical findings to the contrary.

The new research is exciting, finally they are listening to those of us who have taken interferon alpha and have developed autoimmune conditions, and if they know what causes something, fixing it can't be far behind.

I had a good article in a rheumatology mag that was really good but I guess its too old to still be posted.

Here's what I found and it is very exciting, since "anti-interferon alpha" exists and there are drugs that specifically target interferon alpha and can lower secretion. Also, the articles address that certain individuals and families have tendencies to secrete different levels of interferon, since everyone's body is different. This will likely be the singlemost most fantastic discovery toward a cure for lupus, since autoimmune conditions caused by other problems can go away when the instigating problem is resolved. For example, my mil's sle went away once her breast implants were removed and she was treated, I am told.

Here's the new stuff from lupus alliance and other sources:
http://www.medscape.com/viewarticle/537783

"Interferon alpha may prove to be the chief cytokine involved in systemic lupus erythematosus (SLE) in a manner similar to the role played by tumor necrosis factor-alpha (TNF-{char:alpha}) in rheumatoid arthritis (RA), according to new research presented at the 7th International Congress on Systemic Lupus Erythematosus and Related Conditions ."

http://www.hepatitisc-remedy.com/site/459211/page/223692

"Immune Disorders

Interferon has important immunomodulatory properties. Non-organ-specific antibody titers may increase, and indeed may be associated with autoimmune thyroiditis, hypothyroidism, and hyperthyroidism. (10-15) Other autoimmune endocrine diseases have been induced, but thyroid disease is particularly important. (16) Thyroid disorders have been reported in 2.5-20 percent of patients. This may not be reversible after stopping therapy, unless therapy is stopped early, and long-term thyroid replacement may be required. (17-19) It is possible that underlying thyroid disease is more common in chronic hepatitis C infection.

An aggravation of the chronic hepatitis may occur. Patients may be genetically predisposed to this complication and can be recognized by prior autoantibody measurement and HLA haplotyping. An exacerbation of psoriasis may be part of this syndrome. Discontinuation may be required, particularly for hyperthyroidism, unless transient hyperthyroidism followed by hypothyroidism is recognizable. Autoimmune hepatitis usually necessitates discontinuation of therapy. Interferon may promote the development of systemic lupus erythematosus."

Article that talks about measuring interferon alpha levels in people as a possible predictive tool for development of SLE:
http://www.lupusli.org/2007/08/new_research_may_predict_who_i.php

From HCV advocate: extrahepatic manifestations: systemic lupus erythematosis
www.hcvadvocate.org/hepatitis/factsheets_pdf/sle.pdf
Talks about HCV and other environmental and diseases triggering SLE.

It's really exciting all the new info. I hope more of it reaches the right ears and gets posted so the docs get wise. I called the pharmaceutical company in 1994 and told them their drug caused permanent autoimmune damage and other damage to me not covered in the old patient inserts (they have been since ammended) and they insisted it would go away. NOT.

I thought the idea of primary and secondary lupus was pretty cut and dry. Some people inherit it and others develop it from another cause. I didn't know the idea of inheritance was so up in the air. Thanks for educating me.