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Thread: New from Oregon strange AI symptoms

  1. #11
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    Quote Originally Posted by jmail View Post
    I'd forgotten to mention the vitamin D like jolynnhughes did. You might also have your B12 checked, since it affects nerves & their response. The "low" level is currently set at 180-200 in the US, but you can have symptoms below the 380-400 level. It almost sounds like your thyroid might be doing "hot/cold" cycles. Have they checked you for nodules, did you say? That might also be associated with absorbtion of the medicine in your intestines (you mention ibs). Do you take probiotics or digestive enzymes at all? Those (esp. probiotics) help immensely. It'd be interesting to see what your calcium & phosphate levels are. Any asthma symptoms?
    jolynnhughes- I forgot to mention the ringing in my ears that started about 3 or 4 weeks ago. Very new for me. I take 5,000iu of Vit D and alternate with 10,000iu of Vit D (this is fairly normal for those that live in the northwest like I do). I like to be in the upper range. I will share with you my last Thyroid Peroxidase Autoabs was 1998 which is very high. Since this recent issue started I have also had times when my hands were red and splotchy. I showed the first Rheumy I went to and he told me it is age related and hormonal. I didnt agree with that or the fibro dx so I went to a new Rheumy.

    After seeing Rheumy number two and hearing the results of all the xrays I had, I realize that my pain which I thought was joint pain, was actually the swelling of the bursae and tendons. The bursae in my knees swell make me stiff and fatigued from walking (remember from my first post I was running before this all happened), the ankles which causes my feet to hurt including pins and needles on my heels.

    I will be seeing an eye doctor next week. My eyes are dry all the time and I fear I will have to stop wearing contacts. I guess I need to look into the punctal plugs. There is something else wrong with one of my eyes that he watches and takes pictures of , I will need to get the name of that and make sure I have it included in my list of issues.

    The doctor that prescribed me the LDN has suggested that I go to an immunologist next, which I will be doing.

    I also have low blood pressure, sleep extremely hot (which has always been attributed to my adrenal fatigue in the last three years)

    Jmail- I had an ultrasound recently (third in the history of my dx) and the tech was taken back by the looks of my gland, it was very scared and small. I have in the past had nodules which the tech indicated was what she was seeing on my gland, a bunch of nodules. My PCP indicated nothing was abnormal. Then she decided to send me to the endo which I declined. They cant do anything for me, except look at my TSH and drop my meds. I take probiotics in the AM, and take my levo and Cytomel under my tongue in the AM as well. I find that they are much better absorbed this way and dont taste too bad.

    I have had my B-12 tested in the past and it wasnt an issue, but I havent had it checked recently. Need to find a new doctor who values tests like that.
    Calcium in 2011 was in range, is the phosphate test Alkaline Phos or ALT and AST? I had that done last year too all in range.

    I really appreciate everyone's insight and input more than you will ever know. Please keep it coming

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    Default SSA (Ro) result- what does this mean?

    My test result was 117 normal range is 0-91

    What is this test for and what does it mean?

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    It can mean a few things. If it is postive then it can be an indication of an autoimmune disease. By itself its not very telling but it is typically positive with lupus and Sjogrens. Did they do an SSB (La) test as well? If an SSA and SSB test are both positive along with symptoms of dry eye and dry mouth it can mean Sjogrens. At the same time it could be just another antibody associated with lupus. It really depends on what symptoms you are having along with that test. I'm not 100% sure but I think that they usually run these kind of antibody tests after already getting a positive ANA test to see if they can narrow down which disease they think you may have because SSA, SSB, RNP, Jo-1, Sm, and Scl antibodies are all associated with certain diseases. Here is a website that may help. http://labtestsonline.org/understand...panel/tab/test

    Also I don't want to say this to scare you but if you may still be thinking about having children you will want to plan it with a high risk OBGYN because there are some risks that are associated with this antibody, though I don't believe they happen all that often. This antibody can pass through the placenta. I'm Ro positive and was 16 when dx'd and my rheum still really made sure I understood that just so I knew that I had to be careful and plan my children carefully with my doctors just to make sure nothing happened.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    ritzbit2

    The SSB was only 13 with a range of 0-73 so normal range for me. I have Hashimoto's and am experiencing some crazy symptoms for the last 5 months (most of my bursae are swollen and inflamed making popping sounds when I move). Trying really hard to understand the lab work the Rheumy ordered. They ended up dx me with Fibro, but I am having a difficult time believing I woke up this way one morning.

    Fortunately I dont have my uterus anymore so no more kids here (probably due to my Hashimoto's). However because I have am RH negative I had to be cautious with both of the deliveries. Pregnancy wasnt easy for me.

    I will go to the website you suggested and see if I can glean from it.

    Appreciate your help.

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    Also I had the lowest positive ANA which isnt probably considered positive 1:40-1:80 speckled.

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    I know you are correct, and I know I need to find someone who will listen, but I have been to so many doctors. I'm so tired of telling the story. I wrote it all down, and I now just give it to them, but they don't read it. They scan it really quickly and order tests. It's so frustrating. Thanks for the advice. I think I'm going to start the search for yet another.

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    Juliann, I'm sure you know that tinnitus can be a symptom of hypothyroid/Hashimoto's; however, it can also be low magnesium which can happen when you take Vitamin D. I read somewhere that if you take D supplements, you should also take magnesium supplements. Since yours seems to have begun after you started the D, that may help you. I had mine long before I started on the D, but I tried it anyway. Didn't help mine. Mine gets much worse when I get hot. Oddly though, inside hot, not outside. I can be outside in the heat all day long and not have any repercussions, but put me in a hot room, and I'll be sick in no time. Weird!

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    I just had the eye doctor fax my diagnosis of "chronic dry eye and inflammation consisten with autoimmune" to the rheumatologist I saw a few weeks ago. At that time, since my blood work showed only high ANA and nothing else, she sent me on my way. If she blows me off again after this, I guess I'll start over, yet again. Maybe this will be all she needs to NOT blame all my problems on Hashimoto's and get me started on some sort of treatment. Thanks for lighting a fire under my motor, Seattle.

    One other comment: I looked up the Livedo Reticularis, and I don't think that is what is causing the splotchy hands. Mine have no purple tint to them at all, and it happens mostly when I get hot rather than cold. It's just very weird!

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    Hi Julian and all!

    I was recently diagnosed with Lupus and I can completely relate to a couple of things that you addressed back in your first post (sorry I'm just jumping into this I didn't get the chance to check in this weekend). When I was first diagnosed by joints popped/ cracked with practically every movement. It's mostly my toes, ankles, knees, and elbows (that's pretty much most of them I guess haa). Also, I noticed that while working out (mostly yoga and some light jogging) I had severe hip pain. It also happens in my left knee if I sit too long with my legs crossed (I'm 25, so this is most definitely related to AI). I'm not sure how loud the popping is to everyone else.. but it's really loud to me. My joints also begin to hurt badly if I feel like they need to pop and I can't get them too. However, I don't have any noticeable swelling, which is generally related to arthritis and joint deterioration.

    I asked my doctor about it months ago, but I think he just associated it with joint pain from Lupus and figured that it would decrease once stabilized on Plaquenil (which it most definitely has).

    I also get ringing in my ears as well. The cause of this is undetermined though. As my fellow members know I suffer from horrible vertigo, which I associate with the ringing. It's possible that your inner ear is flaring up causing your ears to ring, etc. I'm not positive that my inner-ear problems are even associated with AI yet, but I will keep you posted when I eventually make it to see a specialist

    Regardless of all of this, I hope you get some answers soon. Everyone has really provided you with a lot of great information as well as a lot of support. I hope you figure things out and start to feel better soon!
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

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    jolynnhughes-

    I have been supplementing with Mag for almost a year. Been on Vit D for years. I wish what you suggested might have been the issue. I found myself looking at the nearest teaching hospital today- OHSU to see if they have anyone that specializes in Hashi's, unfortunately they dont, but they do seem to have a decent Thyroid specialists, so I might take a trip to Portland to see if I can get some help. Otherwise all I see are ND's which are great, but I have a very limited benefit with my insurance for Alt Care. I did make myself an eye appt with one of the leading eye doctors/surgeons in Oregon today. This will be the first time I have seen a Ophthalmologist in years, I will share my AI dx for Hashi's and see if he believes I have chronic dry eye like my other eye Dr.

    Lword-
    I was devastated when I went to the second Rheumy and she told me that there was nothing wrong with my joints, it was the bursae. They are so loud, and as you mention, when they feel like they need to pop, and dont, it hurts. I experience this a lot in my right hip (for three years now). Strangely my right knee seems to be one of my most painful areas. That and my left shoulder which makes sleeping really hard. People can hear me popping, it happens with slight movement. I keep waiting for this to subside, if I truly have Fibro, my flare should have left by now, right? 5 straight painful months. I am not sure what i would do if I had vertigo, I am not sure how I am managing to stay sane with the loud ringing in my ears. Did you go to a ENT to have your ears looked at? Mine got plugged up in March, with echoing and switching from side to side for a few weeks, then subsided. The ringing started months later. I am a wreck at age 41, who would have thought?

    Sending healing energy to all
    ~Namaste

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