LS is an autoimmune disease?

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If LS is an autoimmune disease, I'm interested in hearing if anyone has actually been tested for autoimmune diseases as I haven't been offered any blood tests. I know I'm not Diabetic because my partner is and he tests my bloods.

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  • Posted

    My dr ordered ANA panel along with other bloodwork. I’ll update when I know. 
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    • Posted

      Thanks for letting us know Pat. That's interesting and of course I had to go find out what ANA panel is...  so it is another form of testing for several different autoimmune situations. esp. lupus.  will be interested to learn more when you have it. 

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  • Posted

    Hi Linda only just been diagnosed at my gp surgery awaiting to see someone at vulva clinic, i gave blood for nearly 20yrs about 7/8yrs ago i got stopped and made several enquires to be told white blood cells were attacking other cells and when asked what this meant was told when i get old i would end up probably with rheumatoid arthritis my chiropadist says my feet look like i am starting with it as my toes are clawing, so 57yrs and feel like its all down hill but would like a blood test and more knowledge .

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    • Posted

      Dearest Valerie!  no no no... it doesn't have to be all down hill.  We CAN back out of or control these autoimmune diseases. I have a dear friend who is a prolific graphic artist - the artist's artist if you will. She NEEDS her hands & wrists. She is managing RA with acupuncture and traditional chinese medicine supplements AND Vitamin D3 etc that is the protocol for autoimmunity.  

      read this all for more knowledge(what I've found out in 3 months online research: 

      https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

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    • Posted

      Yes Nancy, I did read about the doctors only believe its an autoimmune disease since 2012 which as you say isn't very long. I am waiting for a call from the doctor this afternoon. I now have oral thrush which needs treated. The list just goes on and on. Must think positive

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    • Posted

      OH Linda - so sorry. But are you sure it is oral thrush and not oral lichen planus? when you get a call from your doctor do ask him about those two and how to tell them apart.  The lovely gentleman at the health food store who told me about the amazing aloe vera gel with tumeric for our LS,  has oral licehn planus and he keeps it in check with a daily mouth swishing of the aloe vera LIQUID form with tumeric drops.. if that might help you feel better. 
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    • Posted

      I did wonder about Lichen Planus Nancy because my mother had it. I didn't actually get to see a doctor, they just left me a prescription. Will see what its like after finish treatment. 

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  • Posted

    Good morning LInda - well here on the east coast of US. smiles.  Yes I've had the TPO test that my doctor says should be given whenever the TSH and T4 tests for suspected thyroid are given. And yes I tested positive for autoantibodies for autoimmune thyroid. 

    while researching this dang thing, I found out a few months ago that Lichen sclerosus has only been proven to be an autoimmune disease  in 2012 - which means that many docs haven't had time to find that and act on that yet.  I was visually diagnosed with LS and don't feel any need for a biopsy of the obvious. 

    If you are a bit concerned about how you feel, do read upon thyroid symptoms for instance and ASK your doctor for the TPO test alone with the others. Also my cardioologist-turned-integrative doctor is VERY up on the deficiency of Vitamin D status worldwide and does do that test. You might want to ask about that test. Do read my report to the group here:  

    https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

    to find out about the details. Another test that I did ask my Doctor for is one for Selenium status. Just know that autoimmunity only affects 5% of the population no matter which of 100+ diseases - so most doctors don't know all the ins and outs of this so help them, be a detective for yourself. My doctor has been very appreciative of my own efforts. 

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    • Posted

      Hi Nancy KB, 

      Doing okay here on the west coast in the US. Could you please explain further when you had your TPO test and you tested positive for antibodies for autoimmune thyroid, does that mean you have Hashimoto’s? Or that you have a second auto immune disorder with your LS? 

      I have been taking a version of Synthroid for about 30 years and now my TSH readings are see sawing. In May they were 28.69, then dropped to .23 and then .27. The range being .4-5. My doctor never orders the TPO which I will request next time. I just had a huge blood panel completed in May as it had been 5+ years but in looking back she did not test for Vitamin D either. 

      My LS was confirmed with a biopsy in 2014 with my gynecologist and after researching I saw it was an autoimmune disease. She didn’t mention that. Thank you so much for all you do for this group!

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    • Posted

      Hi there Ruby,  ah you may know better than me. Dr. Bailey didn't use the term, hashimoto's, just autoimmune thyroid. And wen I was researching all this stuff about autoimmunity months ago i saw that there were a couple differences illnesses involving the thyroid - so I don't really know the difference. I do now take levothyroxin and I wish I had gotten access to a decently trained doctor to test me properly 15 years ago.  

      Ruby I'm not sure you need the TPO test if you've already been diagnosed and taking synthroxin for 30 years? I think all the TPO does is confirm thatyour body is making antiboies to 

      Thyroperoxidase (TPO) Antibodies

      oh well maybe... "Differentiating thyroid autoimmune disorders from nonautoimmune goiter or hypothyroidism As a diagnostic tool in deciding whether to treat a patient who has subclinical hypothyroidism.' 

      grin - Me no know... I just feel better since last fall - i.e I don't fall asleep i the middle of the afternoon - and I can get my dishes done at night... grin... 

      See if you an get your doc office to send you a print out of the exact blood work and as well if they oranotehr doctor's office has blood counts from 5 years ago... argh well if you didn't ASK for a vitamin D test it's probably not there either.. but ask.

      cheers, keepign on!

       

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    • Posted

      Hi Nancy,

      Thanks for the quick response. I’m so glad you are feeling better anyway since you’ve been put on the levothyroxin. And a dx is always good even though we don’t like it, it gives us the facts. I was originally just dx with hyperthyroidism, then years later switched to hypothyroidism. No ones ever mentioned an autoimmune disease, but now I’m wondering if that TPO test would clarify. Does it really matter anyway? It would just give me something else to fret about. Ha. I can see my blood test results for the TSH for 5 years but no more info. Not sure that helps. I do take 4,000 IU Vit D3 daily when I remember to take my vitamins, teehee, so I’m probably ok on that too.

      As an aside, when doing your massive research on everything, did you ever come across R. Stuart Fowler MD? He is in Arizona. He thinks all our vulva problems have to do with micro flora imbalances. 

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  • Posted

    Hi Linda- Yes, LS is an auto immune disease. Many docs will tell you no since it was only qualified as of 2002. If they are not reading the most up to date material, they may not know this. With that being said, I asked for every test under the sun when I went for my follow- up- ANA, thyroid levels, liver panel ( liver    “congestion”), all hormone levels, etc. Just just got results back and I do not have any other autoimmune diseases ar this point ( it is common to hv several at a time- Hoshimoto’s, Vittalagio, lupus, etc).  My thyroid and liver were fine, Estrogen is great ( 47 and still get period every 28 days), but I had 2.7 Testosterone- that’s almost none! Shoujd be 15-60. He prescribed a testosterone cream for my inner thigh and will re-check my blood in 6 weeks. I sing professionally and can not take the Biotee pellets or injections because testosterone can cause vocal cords to grow and voice to deepen ( I am a high Soprano and not taking any chances!)

    Please ask your dr to check you for all above so you will know where you stand and how best to approach your individualized treatment. 

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