View Full Version : Anyone with an autoimmune disease?
Just had my annual physical in late Dec. and, for the first time ever, I had some weird elevated lab results (and my insurance policy just got cancelled - DOH! Have the VA for now though to cover it). Several of them indicated a possible autoimmune disease (or 2) and on recent further testing it could be a nasty one (scleroderma) or possibly something worse. Getting more tests done this week to narrow it down further but am wondering of anyone deals with an on-going autoimmune disease and what have been your experiences. Don't have any symptoms or problems at all (other than a rash) but whatever it is seems to be attacking my liver and possibly bone or bone marrow.
In my travels, I've run across a lot of information that autoimmune disorders are often related to celiac disease, and if you have one you should be tested for it. Do you have any symptoms?
May I ask what kind of doctor you have and which tests were elevated?
fidgiegirl
1-10-14, 5:36pm
I have Hashimoto's thyroiditis, an autoimmune disease that attacks the thyroid. I had a lot of gut problems but do not have Celiac, although a lot of people who have one have the other. Like Jane said, it's not uncommon for people to have more than one autoimmune disease. Luckily with changes to diet (eliminating gluten) and monitoring thyroid levels I am feeling much better than I was two-three years ago. I hope you find the underlying cause and are able to treat it, rather than just masking/suppressing symptoms.
May I ask what kind of doctor you have and which tests were elevated?Initially I had abnormal (elevated) liver functions tests (and I don't drink much - last time was almost a year ago) and some low white and red blood cell counts on my annual blood work. So my primary care person sent me to a liver specialist at the VA hospital. They did a bunch of other blood tests for antibodies and immunoglobulin's as well as a liver biopsy and ultrasound. Tests ruled out a bunch of autoimmune diseases (including celiac) as well as things like hepatitis but have to await results from new tests. Dr said it may be Systemic Lupus (SLE), something called mixed connective tissue disease (MCTD) or a form of scleroderma called Progressive Systemic Sclerosis (PSS), or maybe some nasty things that aren't autoimmune like multiple myeloma, leukemia, lymphoma. Having more specialized test to (hopefully) rules those out next week. In any case I doubt it's any of those and may be something totally different - although it is pointing to an autoimmune disease. I have no symptoms at all except for a weird rash on my stomach and some other small areas that I will have looked at by a dermatologist next week. After that, depending on the lab tests (the VA is sending them off to a special non-VA clinical lab so will take awhile for results) I'll know more. But I've heard it can take months or even years to determine if something is an autoimmune disease so was just wondering if anyone had any experience or advice on the whole process. All seems to be a pain in the butt :-)!
Have they ruled out non-alcoholic fatty liver disease?
Due to a relative's experience with lupus, I've seen how complicated diagnosis and treatment can be. At the time he was diagnosed, Lupus had a list of associated conditions/symptoms, and if a certain number were observed/measured, the person would be said to most likely have lupus. If the other conditions have similar diagnoses, I can see how it might take some time to narrow things down.
My relative has had a much better time with the disease than doctors anticipated 20 years ago. Although the lupus caused kidney disease, it has not progressed to the extent they anticipated. He has had to deal with other complications, but has maintained reasonable health despite all that. He is extremely careful about diet and exercise.
Best wishes as you wait for results!
Sorry you're having to go through all this, Spartana.
Wanted to mention that, although I know you said you have tested negative for celiac, I have a friend with severe Lupus who was greatly helped by eliminating gluten. I don't think she ever tested positively for celiac either, so it's still something to consider for any auto-immune stuff.
Keep us posted on how things turn out.
fidgiegirl
1-10-14, 8:28pm
Yes, I would agree on the gluten point, worth thinking about even if no celiac.
I think one of the reasons it takes so long is that it's so elusive . . . like Rosemary said, it's not that there is any ONE thing that can be pointed to . . . sometimes it's more observation than anything . . . I was told I had my condition but the endocrinologist downplayed what it really meant and I consequently thought it was no big deal. Well, five years later of no treatment and I felt like garbage.
Spartana......what is elevated on your liver enzymes and how much? (if you don't mind my asking).
Spartana,
I currently have an autoimmune disease which has caused fibrosis in the lining of my lungs. I have been diagnosed with hypersensitivity pneumonitis. My pulmonologist is at UCLA Medical Center. My primary care physician didn't not think I had anything wrong with me, but after pressing the issue I saw a pulmonologist where I live and he referred me to UCLA. I am so grateful. I would recommend you see a specialist.
Interestingly, my sister has an autoimmune blood disease; her son has Addison's disease (autoimmune); and his daughter has an autoimmune skin disorder. Thankfully, everyone is doing fine.
Just had my annual physical in late Dec. and, for the first time ever, I had some weird elevated lab results (and my insurance policy just got cancelled - DOH! Have the VA for now though to cover it). Several of them indicated a possible autoimmune disease (or 2) and on recent further testing it could be a nasty one (scleroderma) or possibly something worse. Getting more tests done this week to narrow it down further but am wondering of anyone deals with an on-going autoimmune disease and what have been your experiences. Don't have any symptoms or problems at all (other than a rash) but whatever it is seems to be attacking my liver and possibly bone or bone marrow. Oops - should have said that I first had elevated liver tests (which measure damage to the liver rather than how it functions) and low white and red blood counts last Jan. So going thru all the tests and dr's visits has taken almost a year (lots and lots of waiting for tests and dr's appts at the VA hospital) with no concrete results of what is causing everything yet. Next liver dr appt. isn't until mid-March but will hopefully rule out things with new lab tests next week. One big reason I just bought a new insurance policy (card came in the mail today) so that I can start going to a civilian dr and hopefully get things resolved much much sooner.
Have they ruled out non-alcoholic fatty liver disease?Yes. First thing they ruled out after my initial high results last Jan. with re-testing my blood and ultrasound 2 months later. I do have some liver damage (confirmed with a biopsy - again a couple of months after ultrasound) but not caused by non-alcolholic fatty liver disease (NAFLD).
I had actually never heard of that disease and was surprised to learn that 25% of the US population has that - YIKES. Seems like it's mostly caused from being overweight or obese (I'm neither) but other reasons too. Apparently when the liver is damaged by something, fat and/or fibrous tissue fills in the damaged areas even if a person isn't overweight. Liver Dr also said that my liver enzymes were too high (5 times the max. range) to be NAFLD anyways.
So after some other tests to rule out hepatitis and a bunch of autoimmune diseases (still getting tested for some others next week) and giving up anything for the past year that could cause further liver damage - like alcohol, anything with high fructose corn syrup (which is just as bad for your liver as alcohol), any vitamins, mineral, and herbal suppliments and teas, as well as pain pills except occasional asprin - my liver test results are still very elevated and my white and red blood cell counts low. So more tests to pinpoint what is causing liver damage - and potentially other organ damage as well. Sigh...
I have Hashimoto's thyroiditis, an autoimmune disease that attacks the thyroid. I had a lot of gut problems but do not have Celiac, although a lot of people who have one have the other. Like Jane said, it's not uncommon for people to have more than one autoimmune disease. Luckily with changes to diet (eliminating gluten) and monitoring thyroid levels I am feeling much better than I was two-three years ago. I hope you find the underlying cause and are able to treat it, rather than just masking/suppressing symptoms.
I never heard of Hashimotos - will have to check that out as I am also hypothyroid and take synthroid. On my newest TSH test it was very elevated (although always normal in all the years past on same dose of synthroid). So they increased my dosage and will get re-tested in a month. Don't know if Hashimotos attacks the liver or just the thyroid but will defeinetly check it out. Thanks for the heads up as my Dr's are always so closed mouth about that kind of info.
Spartana......what is elevated on your liver enzymes and how much? (if you don't mind my asking). I've had so many tests lately that I can't remember all the exact numbers but my liver function test (LFT) results for AST and ALT were both close to 200 (range is 0 - 40), Besides low white and red blood cells counts (and several other blood results that are abnormally high or low) I have some other abnormal (high or low) tests and/or positive (GGT, ALP, etc... ANA - an antibody test that shows I am "strongly positive" in at least two different types antibodies - one which indicates a certain type of scleroderma (PSS) and another that is common in a specific type of lupus (SLE) and both are common in certain bone marrow cancers (UGH!). And an immunoglobulin IgG that is elevated and monoclonal which is indicative of blood or bone cancers. Had a bunch of negative antibody test too (AMA, Anti-Sm Ab, anti smooth muscle ab). More tests next week to narrow things down. Will try a gluten free diet as others have suggested. Thanks for the info everyone!
The VA doctors I have experience with (Oregon) are noticeably more thorough and caring than private practices. YMMV, but can you keep both?
Wow.........things at the VA move VERY slowly.
I'm glad you will get possibly better treatment with your new policy.
Good luck Spartana. I hope everything turns out well. Keep us posted!
The VA doctors I have experience with (Oregon) are noticeably more thorough and caring than private practices. YMMV, but can you keep both?I agree that they seem to be just as good (better even!) then what I experienced with private doctors/hospitals so Yes!! I plan to continue using them if possible (and I'll always use them for treatment or monitoring of my military service-connected injuries) . The VA will just charge me a co-pay and then bill my private insurance for re-payment of any treatment or tests I get at the VA. Using the VA means I can't qualify for ACA subsidies but for now that's OK as I can afford the premiums. I could go without private insurance all together and just use the VA. And I was going to after my policy was cancelled end of Dec. since I figured nothing was really wrong with me and I wouldn't need any kind of treatment. or any on-going medical care. But now that latest test result may indicate otherwise, I figure I'd rather pay the big bucks for a decent policy (Silver level) in case I do need to use a civilian medical doctor because of long waits at the VA. And I can use both if needed - or in case there is another government shut down :-)!
I'm glad you can use both--the more minds, the better!
frugal-one
1-11-14, 3:36pm
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I'm glad you can use both--the more minds, the better!Well I had actually decided not to buy a new insurance policy and just use the VA for the next year at least. I had my annual physical and blood tests (cholesterol, etc..) at the same time as I did my most recent blood tests for liver and antibodies (just before Christmas) and when my primary care Dr (well... a nurse practitioner not an MD) left me a voice mail later that day saying all my blood work came back good (except thyroid tests I mentioned above) and I didn't need to come back for a year I assumed she meant ALL my lab tests. So I did the Happy Dance (and began my almost 2 week long holiday pig-a-thon :-)!) thinking I was in the clear. Then a few days ago my liver dr called and said some of my new antibody and immunological tests were elevated/positive and I needed more tests. UGH. Apparently they sent them to a non-VA lab separate from my routine physical tests and it took longer to get the results back. So I went ahead and bought a policy on ehealthinsurance.com....just in case. Like you said, two minds are better then one :-)!
Spartana,
I currently have an autoimmune disease which has caused fibrosis in the lining of my lungs. I have been diagnosed with hypersensitivity pneumonitis. My pulmonologist is at UCLA Medical Center. My primary care physician didn't not think I had anything wrong with me, but after pressing the issue I saw a pulmonologist where I live and he referred me to UCLA. I am so grateful. I would recommend you see a specialist.
Interestingly, my sister has an autoimmune blood disease; her son has Addison's disease (autoimmune); and his daughter has an autoimmune skin disorder. Thankfully, everyone is doing fine.
Do you have to take any special meds for your disease? I've been reading up on Systemic Lupus and Scleroderma and it seems that many people have to take lifetime steroids (usually prednisone combined with another drug) which sounds like it has a lot of bad side effects.
Due to a relative's experience with lupus, I've seen how complicated diagnosis and treatment can be. At the time he was diagnosed, Lupus had a list of associated conditions/symptoms, and if a certain number were observed/measured, the person would be said to most likely have lupus. If the other conditions have similar diagnoses, I can see how it might take some time to narrow things down.
My relative has had a much better time with the disease than doctors anticipated 20 years ago. Although the lupus caused kidney disease, it has not progressed to the extent they anticipated. He has had to deal with other complications, but has maintained reasonable health despite all that. He is extremely careful about diet and exercise.
Best wishes as you wait for results! Systemic Lupus is one of the autoimmune diseases that my antibody tests show I MAY have (I have a couple of antibodies for different autoimmune diseases), Hoping it's not that but good to know that your relative has had good luck dealing with it. I've been reading online about it and it does sound nasty but then those are probably worst-case-scenarios. Thanks for the info!
Gardenarian
1-13-14, 2:09am
Sending positive thoughts and energy your way Spartana.
Sending positive thoughts and energy your way Spartana.Thanks!! I'm not too worried...yet :-)! But I do find it all kind of interesting to learn about. Scary but interesting. As long as I feel as good as I do then I won't complain (or whine) too much...yet :-)!
My relative did take steroids for a long time - probably about 20 years - but was then weaned off of them by a new doctor, and has not noticed any bad effects of no longer taking them. It is my understanding that, for many people, lupus can go into remission. I'm not certain how that would impact antibody levels, or how they determine remission.
There are various autoimmune diets; Terry Wahls, MD manages her progressive MS with one.
Daughter has morphea - it's remained stable, hoping it stays that way.
Daughter has morphea - it's remained stable, hoping it stays that way.Oh wow - so sorry to hear that. I just looked it up online as I had never heard of it. Glad she's stable. Does she have to take any meds for it or use special skin stuff for rashes? I have a weird rash on my stomach and small areas where I had previous skin injuries - like on some really old scar areas. Very weird. They have been getting much smaller and fading since I started putting a 0.5% salicylic acid lotion on it. Don't know what is causing it but started last year. See a dermatologist on Friday
My former boss came down rather suddenly with an autoimmune disease called transverse myelitis which has resulted in almost complete paralysis. It happened shortly after an overseas trip so have often wondered if there was any correlation with that -either picking up a strange virus or having to get numerous shots prior. Who knows?
fidgiegirl
1-14-14, 4:59pm
My former boss came down rather suddenly with an autoimmune disease called transverse myelitis which has resulted in almost complete paralysis. It happened shortly after an overseas trip so have often wondered if there was any correlation with that -either picking up a strange virus or having to get numerous shots prior. Who knows?
I think this is what Stella's sister had, but could be wrong. Rings a bell and basically that's what happened - eek! Scary!!!
I have both MS and Lupus, with the MS being the most dominant disease. It was a long road to diagnosis - about 2 years.
Spartana, any questions you might have I'd be glad to answer to the best of my ability. :)
I think this is what Stella's sister had, but could be wrong. Rings a bell and basically that's what happened - eek! Scary!!!I hadn't heard about Stella's sister. That's terrible. Well wishes to her and her family!
I also had never heard of that autoimmune disease and it IS scary. I always though autoimmune diseases just gave you a few aches and pains and maybe a rash or two - learning differently. YIKES.
I have both MS and Lupus, with the MS being the most dominant disease. It was a long road to diagnosis - about 2 years.
Spartana, any questions you might have I'd be glad to answer to the best of my ability. :)Thanks - I appreciate the offer of advice and once I know more I'll take you up on that!. I hadn't known MS was an autoimmune disease and am surprised you have both (so sorry!). But then someone else here did say that they "travel in packs" and many people have more than one. Couple of my antibody tests indicate I may have 2 or more also (or maybe something else all together). Will know more soon.
gimmethesimplelife
1-15-14, 12:07am
Have they ruled out non-alcoholic fatty liver disease?I have this myself from all my years of waiting tables and (foolishly) living off of free Coca Cola for energy.....High fructose corn syrup consumption over time can indeed lead to non-alcoholid fatty liver disease so I'm told.....Rob
gimmethesimplelife
1-15-14, 12:12am
Spartana, I'm sorry to hear of this.....It's really scary when you stop and think that the human liver has over 500 functions that humans need done to live. Have you debated any kind of alternative medicine? I only ask this as in Traditional Chinese Medicine there are quite a few herbal remedies for liver issues. And of course there are always milk thistle, Oregon grape, turmeric, dandelion, artichoke tea, etc. for liver issues widely available here. Just sayin' if you are open to considering it.....Rob
gimmethesimplelife
1-15-14, 12:13am
Sending positive thoughts and energy your way Spartana.+1 Rob
I heard on the news this morning that acetaminophen (Tylenol) can also damage one's liver.
iris lilies
1-15-14, 10:38am
I heard on the news this morning that acetaminophen (Tylenol) can also damage one's liver.
Of course. Several kids a year die of tylenol poisoning. There was a big bru-ha- ha about dosage labeling and making it more clear after the last batch od child deaths.
I have this myself from all my years of waiting tables and (foolishly) living off of free Coca Cola for energy.....High fructose corn syrup consumption over time can indeed lead to non-alcoholid fatty liver disease so I'm told.....Rob
I understand you get it the same way foie gras geese do--overfeeding of grains/carbohydrates.
Of course. Several kids a year die of tylenol poisoning. There was a big bru-ha- ha about dosage labeling and making it more clear after the last batch od child deaths.
From a medical abstract*: "...acetaminophen hepatotoxicity far exceeds other causes of acute liver failure in the United States."
*http://onlinelibrary.wiley.com/doi/10.1002/hep.20948/pdf
Clearly, a dangerous drug.
I had Lyme's diagnosed in the late 1990'2 and just had a doctor smart enough to find out if I still have it and I don't. It was easy to get a diagnosis as I lived in Dutchess County, NY, which then had the highest rate of it. I have psoriasis--about 7 years now. Also polymyalgia rheumatica--that was a laugh about diagnosis because of the crazy theories different doctors had about what was wrong with me. I went to 7 of them until I found one who diagnosed it about 3 years ago. Since then been seeing a rheumatologist and am now going off Prednisone I've been on for it. Going off Prednisone is not fun--its taken about 1 1/2 years of trying--it has to go really slowly and everytime I go down like a 1/2 mg some of my original symptoms come back for a few days or weeks. When I got it, it was apparently triggered by an emotional response (DH being told he was being fired) and a physical one (very rough ear treatment at a sub-par clinic). The orginal symtoms were exhaustion, weakness and joint pain. It was diagnosed partly by noting my response to Prednisone was dramatically good. I find concentration very difficult, some days impossible.
From a medical abstract*: "...acetaminophen hepatotoxicity far exceeds other causes of acute liver failure in the United States."
*http://onlinelibrary.wiley.com/doi/10.1002/hep.20948/pdf
Clearly, a dangerous drug.Was a warning about this on the nightly news yesterday. My MD had warned me off of that stuff (which I have never taken) as well as many other things like herbal and nutritional supplements which can have unregulated ingredients in them that may cause organ damage. Nothing for me at all except an occasional asprin if needed.
Rob - Thanks for your input on various supplements to help my liver but can't take them due to what I wrote above. I have heard they help though so maybe for people who have just a small amount of liver damage that can easily mend itself they would be good and not harmful. Until they can figure out what's actually wrong with me, and how to correct it, then I'll abide by my MD's orders to not eat, drink or take anything that may cause further damage. Although being forced into being a good girl may kill me :-)!
Best to avoid fructose, too. I just watched this video: http://www.youtube.com/watch?v=E57cFhjpxgw
Best to avoid fructose, too. I just watched this video: http://www.youtube.com/watch?v=E57cFhjpxgwYeah I read labels like a friend now a days. Can't believe how much fructose (especially the high fructose corn syrup) there is in EVERYTHING. Boogles the mind. I eat pretty much a wholefoods/ raw foods diet but occasionally like to hang with my homeys Ben and Jerry :-)! At least my cholesterol, blood sugar, etc... number are very good but anything to keep the good old liver from being further damaged will help. Having had no alcohol for the past year might help too :-). No wine either (Iris Lilly would be horrified!)
I'm convinced that--depending on our genetic makeup--toxic substances will have their way with our bodies one way or another. We may get fat, we may have extreme sensitivities or autoimmune diseases, we may get heart disease or stroke, but it will generally catch up with us.
I'm convinced that--depending on our genetic makeup--toxic substances will have their way with our bodies one way or another. We may get fat, we may have extreme sensitivities or autoimmune diseases, we may get heart disease or stroke, but it will generally catch up with us.You're probably right. Maybe we should just sit back and enjoy the ride and not worry so much about it all. Now where did I put the rum and coke :-)!
It's in the cupboard right next to the Mescaline. Will you bring me a hit of that, as long as you're up?
iris lilies
1-17-14, 4:51pm
You're probably right. Maybe we should just sit back and enjoy the ride and not worry so much about it all. Now where did I put the rum and coke :-)!
It is very important to me that heart attack/stroke heppens to me, killing me, before my familial Alzheimer's kicks in. I eat accordingly.
Jane and IL - :devil::devil::devil:
It is very important to me that heart attack/stroke heppens to me, killing me, before my familial Alzheimer's kicks in. I eat accordingly.
Ha, ha, Irislillies! Since lung cancer runs in my family, maybe I will try out the new CO pot laws...
But more seriously, autoimmune diseases run pretty heavily in both sides of my family. Relatives have the following: Crohn's (sister), MS (cousin on Dad's side), Graves (Dad), vitilago (Mom), rheumatoid arthritis (cousin on Mom's side and maternal grandmother), psoriasis (me and my mom). I think that's it. I hope. Most were reasonable to diagnose, though. My sister had diarrhea for like weeks as a child, and they got on that really fast. It's up and down with her, though-she just switched meds after becoming tolerant to whatever she was taking. Plus I think she takes aloe juice (because it's anti-inflammatory and the disease originates as an inflammatory problem in the GI tract). Graves is an overactive thyroid caused by an antibody attacking the feedback receptors for thyroid hormone. My dad did not have his thyroid removed at this point, but he may still be on meds to suppress the issue. He lost weight, couldn't sleep and was always hot, and always eating. Losing weight while eating way more than normal means you're either on drugs or have a thyroid problem, unless you suddenly took up massive exercise! Anyway, unfortunately the science behind autoimmune diseases are pretty weak compared with other diseases :( so best of luck getting your stuff figured out and under control. It's scary to have liver issues and such!
Thanks Rosie - Now I have MORE stuff to look up :-)! Guess I never really looked at medical things before as pretty much all of these diseases are new to me. Had a skin biopsy yesterday of my rash but hoping it's psoriasis (Dermatologist couldn't be sure) but he mentioned something called psoriatic arthritis as a possibility. Not sure what that is so will have to look it up. I don't have any arthritis or any aches or pains (well not too many!) so doubt it's that - or in beginning stages if it is.
ETA: OK just looked up the psoriatic arthritis and am sure it's not that. Good - as that looks both painful and crippling. YIKES!
Spartana, if your rash is whitish looking, have the doctor doa biopsy for lichen sclerosus. It is suspected to be an autoimmune disease closely associated with hypothyroid disease. As far as I know, the liver is not usually involved in thyroid diseases. I have Hashimoto's disease and lichen sclerosus.
Spartana, if your rash is whitish looking, have the doctor doa biopsy for lichen sclerosus. It is suspected to be an autoimmune disease closely associated with hypothyroid disease. As far as I know, the liver is not usually involved in thyroid diseases. I have Hashimoto's disease and lichen sclerosus. It's flat, smooth and red looking - more a skin discoloration, sort of like a fresh bruise or a sunburn. It's actually almost gone now (was the size of a dinner plate on my entire stomach, now just about 3 inchs across) but the dermatologist gave me a cortisone cream for it. Dr did do a biopsy last week but don't know the results yet. So far the new lab tests I did are leaning towards either something called mixed connective tissue disease (which is a combination of several autoimmune diseases like lupus and scleroderma, etc..) or polymyositis (which is an muscle inflammation and wasting disease). Both can effect the liver as well as other organs. They are sending me to a rheumatologist but can't get an appt until mid-March so won't know any more until then. So for now I won't worry about it and will go play, play. play!!
Gardenarian
1-24-14, 5:36pm
Playing is probably the single best thing you can do for your health anyhow. Enjoy!
Playing is probably the single best thing you can do for your health anyhow. Enjoy!So true. I do play a lot - and don't think it's possible to actually play much more without killing myself :-)! - and have no health complains or issues (other than this thingie and it doesn't have any noticeable effects on my health) so all my playing hasn't been in vain :-)!
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