Autoimmune Disorders :: Do Your ANA Patterns Change?
Jul 8, 2014
So now I feel like a complete hypochondriac. Ladybud (who is fabulous, btw) has helped me tremendously. I am wondering if any of you have had your ANA patterns change. I am having muscle aches, dx with small fiber neuropathy and Raynaud’s, my RBCs and C-reactive protein have been low throughout the last 3 years. I now have been dx with a reactivation of the Epstein Barr virus and alopecia due to “granulomatous Dermatitis” (getting 2nd opinion later this month).
These are my titers and patterns over the years:
10/2011 ANA Titer: 1:320 Pattern: Homogeneous
11/2011 ANA Titer: 1:320 Pattern: Homogeneous
10/2013 ANA Titer: 1:320 Pattern: Homogeneous
5/2014 ANA Titer: 1:160 Pattern: Homogeneous
AND NOW:
6/2014 (AVISE SLE 2.0 TESTING (1st time with this test) ANA Titer: 1:80 Pattern: Diffuse fine speckled
Negative on all markers. I am HLA-B27 Positive, but negative for ankylosing spondylitis (AS).
Now my rheumatologist stated all my blood work appears to be normal and I have ZERO autoimmune positivity.
Huh? I feel like such a hypochondriac.
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My legs turn very weird colors and patterns! It's hard to describe. But they turn red and purple. The purple kind makes like a hexagon shape with bright red blotches in the middle. It's happens all the time and its mostly random though I've seen its more common when I'm cold or I'm in the shower. It's embarrassing, I can't wear shorts when it's 90 out! Why do they do this and how can I fix it?
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I am male and so likely have had less severe autoimmune manifestations than females since they seem to have stronger immune responses. However, I have had some difficult times with autoimmunity. It started in 1972 with antiphospholipid antibody syndrome which caused deep vein thromboses in both legs. I started taking coumadin at this time but the dosage was not high enough to prevent some further clotting and a number of the clots travelled to my lungs causing pulmonary hypertension. Eventually, in 1994, this became severe enough to cause heart failure and the clots were removed via a pulmonary thrombo-endarterectomy. Subsequent to this, I developed lupus symptoms and lost both my adrenals and thyroid to it. The other lupus manifestation was regular pleurisy attacks. Also by this time, despite the coumadin, I was getting regular small blood clots on the skin on my feet and ankles, many of which subsequently turned into painful ulcers. In 2006, after reading an article on the internet by a doctor in charge of a hospital ward who was giving his patients 5000 units of vitamin D3 to prevent them getting sick, my wife and I started taking 5000 units of D3 ourselves hoping to avoid colds and flus. The vitamin D3 worked in stopping the colds but, in my case, it had another even better effect. The blood clots on my feet stopped and I have had none since.
In addition the pleurisy attacks almost ceased. With some additional experimentation, I found 10000 units of vitamin D daily (in split doses morning and evening, stopped the pleurisy attacks altogether. I remain free of the autoimmune effects since I started on the higher D3 dosage. I discussed the dosage with my hematologist and he felt up to 15000 units a day should present no problems in causing calcium over-retention (stones). I would recommend to anyone with auto-immune problems to try at least 5000 units a day of vitamin D3 to see if it reduces autoimmune problems. If you are concerned, you can discuss it with a doctor first but I have been taking 10000 units a day for several years now with no ill effects.
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I am a 29 year old female and I was diagnosed with Hashimoto's Thyroiditis at the start of the year. I have been having problems with my right eyelid in that over the course of the day it progressively becomes droopy and the only thing that relieves it is when I close it. When it becomes droopy it makes my eye feel like there's something in it and I end up rubbing it. It's only when I look in the mirror that it's droopy.
In January my endocrinologist ran an autoimmune profile (but not for every single antibody) and rheumatoid factor and these are the results of it:
Rheumatoid Factor - 9IU/mL (<20 negative)
HEP2 - Positive
Type - Speckled
Anti-DSDNA - 7IU/mL (<30 negative)
(Positive antinuclear antibodies but no significant disease association found)
ENA screen - Negative
Autoimmune profile
Antinuclear Abs - Positive
Anti-Smooth muscle Abs - Negative
Anti-Parietal Abs - Negative
Anti-Mitochondrial Abs - Negative
Anti-LKM Abs - Negative
Anti-Thyroid Peroxidase Abs (Anti-TPO) - 141 kIU/L (<34 negative)
I am posting here because I have a suspicion that I have Myasthenia Gravis. Not only have I got the problem with my eyelid but I tried to follow some physical tests for muscle weakness such as holding my arms out straight in front of me and deep knee bends.The results of these home tests I did:
Holding out arms stretched in front for 60 seconds - pain in both arms when it came up to the 60 seconds and left arm dropped slightly
10 deep knee bends - did all 10 knee bends but the last 3 made my legs feel weak and shaky
5 sit-ups (sitting from lying down) - could only manage 4 sit-ups
I have an appointment with my GP on Friday and since this has now appeared I'd like to mention my concerns to them.
My main concerns are :
Wouldn't my endocrinologist have tested me for Myasthenia Gravis if it's an autoimmune condition? If so what antibodies would she have tested and would any of the ones I had tested have shown I have Myasthenia Gravis?
Who do I need to request to see to get a confirmed diagnosis?
If it is indeed Myasthenia Gravis would it be because my current autoimmune condition made it worse? I have read that this is possible and I became very hypothyroid yesterday as I had very bad Reynaud's flares when out and about.
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I've just heard from my GPS surgery that my most recent blood test shows I have virtually no iron! As I have several autoimmune diseases including autoimmune hepatitis, rheumatoid arthritis, SLE (lupus), Raynauds, Sjogrens, acquired autoimmune hypothyroidism) , I'm rather afraid that this could be pernicious anaemia or hemolytic anaemia, as I've never had a low iron level until now. I was taken off methotrexate due to respiratory problems (side effect) and am on prednisone 25mg/day. Does anyone have any experience of sudden iron deficiency please?
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I was diagnosed with fibromyalgia years ago due to constant and sometimes debilitating muscle and joint pain. I am seeing a new PCP and she ordered some blood tests. The first was just a general screening but my c-reactive protein came back as elevated (also my platelets) so the doc ordered an ANA with reflex if positive. ANA came back positive (no titer information - it was just a positive/negative test I guess) and anti-SSA came back at 8.0 (negative range is 0.0 to 0.9). But RA factor, anti-centromere B antibodies, anti-dna (ds) qn, anti-jo-1, anti chromatin, anti scleroderma-70, rnp, anti-SSB, and smith antibodies are all normal.
Besides my muscle and joint pain I have had periods of alopecia (losing quarter to half-dollar sized patches of hair on my head), full-body rashes during especially hot times, asthma, and suspected endometriosis (currently controlled by depo-provera). I also used to never get sunburnt but my face especially gets really red now if I am in the sun for more than a little while. I have darker skin so its sometimes hard to see but lately my cheeks and nose seem constantly flushed.
All of these symptoms have been spaced out and gradual so I never thought anything of each individual symptom. The alcopecia was blamed on "stress" when I went to the doctor for it. The rashes I blamed on a simple "heat rash". My pain was diagnosed at first as carpal tunnel and then as fibromyalgia. But now with the ANA and anti-SSA tests I am thinking it all may be related. But I don't know and my doctor is out of town, and although I know she will refer me to a rheumatologist now as we have talked about that, who knows when I will actually be able to see the rheumatologist. So any thoughts would be greatly appreciated. I am thinking maybe SLE (lupus) but with only that one anti-SSA and none of the others I don't know. Also I do have flares 2-3 times a month where my pain gets much worse but it constantly hurts and aches the rest of the time regardless, which doesn't seem like typical lupus. Oh and I also had severe fatigue until my doc put me on Savella which helped with the fatigue but not the pain. So now I am on gabapentin also but it doesn't seem to help too much either.
I would do almost anything just to be pain-free for even just a day. I am hoping with the ANA results now the doctors will not only maybe be better able to treat me but also will take my pain seriously.
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I was just told by an opthamologist I saw ystrdy for a new patient visit, that my blood work that's been coming up positive for ANA since 2012 just means there's inflammation in my body. Not an autoimmune disorder.
last week a vessel broke in my right eye and it felt weird under the lid. It disappeared the next morning. Then I noticed one a few days later in opposite eye in the morning putting on my mascara, So my husband told me I MUST see an eye dr.
I brought copies of my labs and said that I'm referred to see a rheumy dr.because of positive ANA's.
I had to write down my whole history upon a first patient visit so he knows I have osteoarthritis throughout my body in different parts.
BUT, I didn't mention the strange rashes and how I just out of the blue mopping a floor tore and blew out 60% of my knee meniscus and needed surgery. The right knee feels like something is growing in it. and it clicks when I go down the stairs as if it's catching on something. so when I saw my family dr. for my knees, he only ck'd out the injured one and said he doesn't think it's rheumatoid arthritis but thinks it may be lupus, and referred me to see a rheumy dr. but I can't get in right away. I had to wait 3 months, but the day I went my car didn't start which wound up being a dead battery. I called the office and told them what happened and they couldn't put me in for ANOTHER 3 months. so I'm now waiting almost 6 months to see this so called excellent dr.
I get strange pulls and inflammation in muscles or tissues, like out of the clear blue sky I had pain that radiated down the right side of my buttock and it got to the point where it ached all the time. My rheumy dr. who no longer is in practice, sent me for MRI and it wound up being the psoas muscle. I had to see a radiologist in my local hospt. to get a special injection put thru the hip to get to the psoas. IT HURT LIKE you know what!!!! next day too.
never had it come back. How on earth did I pull my psoas?? the largest muscle in the body. it keeps you from falling off your chair.
My left hip hurts so bad at night that it wakes me up and an old mri says there's a sprain in it??? plus arthritis.
I also have had raynauds syndrome which started during my divorce in 1998. plus numbness in hands, arms, fingers at night and even the scalp.
keep losing hair and breaking off at the edge of my scalp and going bald on sides of head. I have osteoporosis diagnosed many years ago which I refuse to take medication for cause of side effects. I just take calcium.
the list goes on. I used to have a lot of pain everywhere and was diagnosed with fibromyalgia back in 2004. but I don't get those symptoms any more like I used to. so did I actually have it or not? wouldn't I still have the symptoms?
My c-reactive protein level was positive one time only. but the ANA started in 2012 till now. I get blood work done each year.
So Is it just inflammation because of my osteoarthritis? do all people with osteoarthritis have positive ANA tests?
The opthamologist made me feel like I shouldn't even bother going to the rheumy dr.
am I just making a big deal out of nothing?
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I was diagnosed Hashimotos this year.
Here are my adrenal stress test results:
Sample 1 - 3.4 (12-22)
Sample 2 - 6.1 (5.0-9.0)
Sample 3 - 4.8 (3.0-7.0)
Sample 4 - 3.2 (1.0-3.0)
DHEA:Cortisol Ratio - 2.62 (within range)
Latest thyroid function test results:
TSH - 2.50 (0.2-4.2)
Free T3 - 4.6 (3.9-6.7)
Free T4 - 15.7 (12-22)
Apparently my doctor says these are normal, yet when I am taking the Levothyroxine my Free T3 drops and my hypothyroid symptoms return. Am I missing something or am I the only one in the world with this problem? I presume the latter.
I am currently dairy and gluten free and my fatigue and constipation have cleared up since on the diet, however I retook my Levothyroxine and within 2 hours I was constipated. The only change I had made was retaking the Levothyroxine but I did increase my fluid intake, too. The reaction I had from the medication is making me doubt the benefits of it. Or could I be undermedicated at 125mcg? The nurse taking my blood last time said 125mcg is a lot for a little person like me to be taking!
So, in order to wipe the slate clean and start afresh with my care, I have since changed doctors and will be asking for the following at my first appointment:
Sex hormone profile - not just the testosterone, FSH, LH and prolactin my endocrinologist carried out but I would like to include the ones she has *missed* - the oestrogen, estradiol and progesterone. I am sure there are others in there...
Full mineral/vitamin profile - but excluding the folate, Vitamin D and Vitamin B12 which were done recently and including a full iron panel.
Repeat thyroid test - why oh why am I experiencing hypothyroid symptoms AFTER I take the Levothyroxine? When I reported this to my previous doctor they have told me they will end my script for Levothyroxine since they are under the impression I get no ill effects without the medication! Are they right?
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Wonder if anyone has been diagnosed with AIHL and finding treatment unsuccessful? I'm on immunosuppressants but now steroids because of extreme flare up and hearing rapidly declining, steroids now too.
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How did you discover that you had a autoimmune disease? What were your symptoms prior?
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I have psoriatic arthritis and sjogrens. I take methotrexate injections weekly and remicade infusions monthly. I still am having pain and swelling in between all of this. Does anyone else experience a lot of pain?
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I was diagnosed with MTCD 2 years ago. My case is lupus and they don't know what else. My case is mild. I really don't have much pain but I can feel something is there. Over this past year, 2013, I noticed my hairline is receding and now the whole top of my head is thinning. I always had a really beautiful thick head of hair and took great care of it. I keep it short but kind of spiky. Always looked good. But now as I stated my hair is thinning so much you can see my scalp. Just wanted to know if this is happening to anyone else. I am currently taking plaquenil, prednisone, cymbalta and imuran. Very low does. My doctor told me to cut down on the prednisone but after 4 days without it, I felt bad. I visited my dermatologist last year for a scalp biopsy but he said I didn't need it and I agreed. No thyroid problem yet but my numbers keep getting high. I'm thinking it's all of the above but don't know what to do about it. Any suggestions besides a wig?
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I have been having joint pain, general body pain, fatigue, depression and anxiety for years. I was dx with fibro about 3 years ago. It was first suspected almost 20 years ago. My mouth and eyes are painfully dry. My lips constantly crack. I recently had a PAP done and the GYN remarked how dry my vagina was (I'm not sexually active so I never noticed).
I recently saw a rheumatologist here in the State (I had previously seen one in Korea). She did a bunch of blood work. My Vit D was 28 (reference range was 30-70). RF, ANA were negative. CRP not done, but has been elevated in the past (multiple draws over a two year period, but none in the last year). ESR was 58 and has been elevated for 20 years (I went through a lot of blood work in high school and nothing was ever found, but it was with ID, not Rheum).
Rheum was next to useless. She said the sed rate wasn't relevant and that there was no need to worry about the Vit D (which was lower in the past) even though I was taking 2000 IU a day.
After talking to my GP, he had me increase the D supplement to 4000 IU/day. He also wrote me a new referral to a different rheum. This one specializes in seronegative arthritis.
I try to be an informed consumer. Current rheum just wants to throw more pills at the issue without getting to the root of it. It seems like if I go in with a fibro dx, everything must be fibro. How do I approach this new appointment (in September!!) to finally figure things out? This new doctor will be in the UH system as are all my other docs. I think she'll have access to previous lab results, if not I can pull them up in my EMR.
I could use words of wisdom, advice, a kick in the butt (if necessary), etc.
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While the quantity of sleep can be important, what's much more important is the quality. Our bodies go through two distinct stages of sleep starting with non-REM (Rapid Eye Movement) and then into REM and cycling between the two throughout the night.
When we first fall asleep we drop into the non-REM cycle and this can be further broken down into three stages which move closer towards a deeper sleep. It's during the last stage where our bodies repair and heal and rebuild themselves. Non-REM sleep typically lasts up to 60-90 minutes with the majority of that time devoted to a deep sleep.
After this our bodies cycle into REM sleep. The main characteristic of this cycle is the eye movements that take place and before there were EEGs and ways of measuring muscle activity it was thought that our brains simply shut-off during sleep, this was far from the truth. During REM sleep our brains are quite active and this is the time when dreams occur, if you wake up and vividly remember a dream you were probably in the middle of REM sleep. It is also thought that REM sleep enhances our memory and contributes to our mental and emotional health. It's possible that during these two cycles of sleep we go through periods of maintaining our bodies and our minds.
Adults typically need between 7.5 to 9 hours of sleep a night and during this time our bodies will move through one cycle to the next and back several times. There are also a lucky few of us who seem to be able to function on less sleep...
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i'm 14 years old. for the past 2 years i've had this problem. i have these white dot patterns everywhere. its sometimes irritating and sometimes ok. no medicine works. recently its been very dry and uncomfortable and u saw something in my clit. i pressed and a white thing came out. i don't know what's wrong with me but i desperately want it to stop.
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Small but geometric -ish shape. This changes in 1/2 hour or more, the shape gets larger forming a getting larger approximate 'C' shape to the left of center. It is almost like me seeing a crude kaleidoscope . Eventually the thing disappears to the left. The shape seems to be of small triangles squares, anything 'sort of' geometric. I can see past it but still have to see the shape. Whichever eye I close I can still see it; close both I can see it! It has now cleared completely as I have not being looking at the sun or any strong light. Is it 'just one of those things' to be tolerated every now and then. I am 75 and in general good health
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Does norethisterone change your ovulation day? I was using the tablets for less than a week to delay my period and came off them and had unprotected intercourse a few days after. If that had been my fertile window before taking the tablets would that still be my window while I was taking them?
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I often find I am changing up to 8 times a day not because the bag is full but because my skin sweating causes the adhesive to break down and the leaks begin. This is worse in hot countries and when travelling as I will need to change to make sure I have an empty bag before queuing up for aircraft etc. I also need to change before driving any distance as the seat belt position can cause leaks. Is there anyone out there with a similar problem
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almost two weeks ago I was diagnosed with PCOS and the doctor gave me Glucophage and I started it right away
she said that my hormones are normal .. but she tested me the last day of my period (the 8th day)
right after I took Glucophage .. I noticed changes in my personality
I'm not intense as I used to be ... I take things more freely
I also feel sorry for everybody .. not really sorry but mercy? I don't know but I feel I want to help everybody
my sex drive also is up
and some other changes too
and I don't feel like myself .. it feels weird
it feels like there is a difference
I'm wondering can it cause these changes?
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I get anxiety when people or things change.... even people I do not know. Today at work I heard that a child who is two years old is on her last days due to numerous problems. I felt anxiety shoot through my body even though I do not know this child. I know we all feel sad when we hear something like this but I cannot understand my body reaction to this. Another example is that there is a house behind me which is now sold and I feel anxiety that they are leaving even though I have never met them and I dont even know their names. What is this....I don't understand my feelings.
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I was virtually deaf in one ear and very little hearing in the other ear, have worn hearing aids for 25 years. Recently (all happened so quickly, within 6 weeks) got diagnosed with Otosclerosis in both ears. 6 weeks after seeing doctor, i had the op. I had a stapedectomy/stapedotomy on 04/01/2016. Noticed a faint improvement in hearing when lying on the ward after the op, could faintly hear trolleys being moved about. But nothing drastic...... I've had dizziness, (not room spinning dizziness) which now only remains if i read, do jigsaws, scan shop shelves from side to side etc, weird! I've been through the heart pulsating, creaking, the rain dripping onto a metal plate sound etc.
I've had no real explanation of what to expect, i didn't really ask the surgeon any questions as i wasn't sure what would happen after and was unaware i'd have so many unanswered questions come up.
I assumed, and read some on the internet, and was told by a friend who'd had it done, that once the packing was removed, i'd be able to hear. Had packing removed 6 days ago, i'd built myself up SO much, that i stood and sobbed when i still couldn't hear! Surgeon looked a bit puzzled, but he said he wasn't worried at this point and to see him again in 6 weeks and that it'd be fluid behind my ear. He said i need to have some popping before i'll hear.
So, here i am now, with no change in my hearing for the last 6 days. I'm sure when i swallow, i sound as if fluid is in there? I also get like a thunder noise mainly in the morning when i wake up and my throat moves. But what's worrying me most after reading up on the internet again, is when i put headphones on, i can hear the music, (have to have it on loud to hear it), but the loud thumps/beats in the music make my ear crackle like a loose wire on a radio. I read last night that this is because the op hasn't worked and the prosthesis needs tightening/shortening/revising. But then on the other hand i've read that this may be normal?
If i go to do a burp movement when i have music in the headphones, i get a millisecond of a loud noise, but then it goes again as my throat can't seem to hold the noise open if you get what i mean. I have soooo many questions but don't want to bore you with them, maybe later. So, should i be hearing by now, is the crackling loose wire sound normal, and if you have any other advice that might stop me worrying please. I'm just sitting waiting day by day thinking today might be the day that i hear.
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