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  • Frustrated and discouraged newbie-tests normal , but something is wrong!

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    Old 09-25-2003, 01:08 PM   #1
    akanick
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    Unhappy Frustrated and discouraged newbie-tests normal , but something is wrong!

    Hi all, I'm new to this board and am hoping someone may be able to offer help or advice and perhaps alleviate my frustration. Please be patient with my newbie status and lengthy post, but I thought it important to give you the history of symptoms and tests I've undergone.

    Five months ago I noticed what looked like a bug bite developing on my upper calf. I passed it off as such, Simultaneosly, my lips became extremely chapped and the skin actually was shiny and tightened. I had to apply lip balm constantly. I also began dropping weight with no change to my diet or exercise program. In fact, I was feeling weaker while working out at the gym. The weights I had been using for months suddenly seemed impossible to lift.

    By June, I was feeling so run down, tired and weak that I didn't have the energy to even take a walk around the block. In addition, my "bug bite" had turned into a mottled rash up and down my leg and also developed on my left hip and near my bra strap. The skin had thickened and was ivory and violet colored with hyperpigmentation. Yuck!

    My internist suggested an arthritis panel to look for autoimmune disease-results:
    Anti-nuclear AB (ANA) 1.6 H positive(<1.0 = negative)
    Anti-nuclear AN (IFA) 1:1280 H positive(<1:40=negative)

    Meanwhile, I developed additional symptoms including, memory issues,vision irregularities and light sensitivity, more weight loss (total 10LBS on small frame), swollen lymphs in groin, shortness of breath and dizziness.

    Refered to Derm who diagnosed skin rash as "scleroderma morphea" and given chest x-ray which was all clear and negative for interstitial lung disease.

    Referred to Rheumatologist early August who did battery of autoimmune and thyroid tests. Lupus, Sjorgen's, Systemic Scleroderma were negative, however antithyroid antibodies positive.
    Diagnosis-"thyroiditis"

    T4 thyroxine 7.4 (5.0-12.0 mcg/dl)
    TSH (high sensitivity) 1.79 (0.35-5.50 mciu/ml)
    Thyroid peroxidase AB (TPO) 209 H (<35 iu/ml)
    Anti-thyroglobulin ABS 121 H (<41 iu/ml)

    Referred to Endo last week. Within past month symptoms have lessened significantly. Have much more energy and don't feel as run down. Eye pain has subsided as well as breathlessness. However, not able to gain weight,groin lymphs still swollen, tired and occasional dizziness. Endo only concerned about weight loss and seemed dismissive about my other symptoms, however, ordered 5/24 uptake and scan (thought she felt a nodule), thryoid sonogram and additional tests that I'm waiting on including another Anti-thyroid antibody screening as well as Free T4, Free T3, TSH, FSH, Prolactin, testosterone. I'm also scheduled next week for an adrenal functioning blood test with injected cortrosyne(sp?)

    I just returned from the hospital with normal 5/24 uptake and scan. Thyroid looks normal w/out nodules
    5 hour 12% (normal less than 15%)
    24hour 24% (normal 8-30%)
    Attending Dr. said that all looked normal and said that my high anti thyroid antibodies are only indicator that something is going on. A couple of my recent tests came back and showed TSH 2.98 now (normal range) and Free T4 of .87 (forget the scale, but normal range). Of course I will have to wait for the other tests and adrenal functioning, but in the meatime, what does anyone think?

    I've now been told by Dr's. that I have, autoimmune thyroiditis or chronic inflammatory thyroditis and that it could either have been a one time thing this summer or in time could develop into Hashi or Graves. However, what explains my weight loss? And what explains my ugly, rare skin rash, scleroderma morphea, which just happened to appear at the beginning of all of this? I had read that sometimes skin conditions can be related to thyroid. I find it all too coincidental. Does this ring a bell with anyone? So, if all systems are mostly normal, why do I still feel lousy?

    Thanks for taking the time to hear me out and I appreciate any advice you may have.


     
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    Old 09-26-2003, 06:38 AM   #2
    LuvMyLilDoggie
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    Are you on any meds for the thyroid now?? You stated that your last TSH was 2.98. That is really close to the new limit the American Association of Clinical Endocrinologists have put the suggested limits at .3-3.0. As far as the other tests go, I'm not really educated on those so I cannot comment.
    I do know that it takes a while for the meds to kick in and even longer to find the right dosage. Sometimes, people have to change meds a couple of times before they start to feel better. Maybe that's why you're not feeling better just yet.
    The thyroid affects every cell in your body. And many times, hypo and hyper symptoms are quite similar.
    I'm sorry that I couldn't be of more help to you.
    Try starting a new thread and addressing it to Meep or Tree Frog. There are also many others who are very knowlegable on this subject. Good luck in your search. I hope you're feeling better very soon.
    Barb
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    Old 09-26-2003, 08:39 AM   #3
    Iwannalife
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    Akanick, There have been alot of other people bring the rash problem up. I don't know if you know it or not, but you can do a rash search on just this board and bring up the old posts. Searching on this board has really helped me with questions I know have been asked a million times. That way you can get info from people who aren't around anymore too. Good luck, IWL

     
    Old 09-26-2003, 04:45 PM   #4
    akanick
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    Thank you both Bossmom and Iwannalife for replying. Bossmom-No, I'm not currently on any medication at least not until my other blood work comes in next week. Then I will meet my endo again to discuss the results as well as that recent TSH of 2.98. Although it was much higher than my original TSH test of 1.79, he said that I was still well within the normal range. I'll be anxious to find out how my adrenal functionig test goes too.
    Iwannalife-thanks for the search suggestion. I was not aware of that function and sure enough, there are a lot of others out there with skin problems too. I didn't see anyone who had my particular linear scleroderma issue, but I might create a new post like you recommended. I really appreciate both of you taking the time to write. It's so helpful albeit sad to learn that so many others are experiencing unusual syptoms and the interaction among all of you is not only encouraging, but also quite healing.

     
    Old 09-26-2003, 06:59 PM   #5
    Windyblaze
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    I have been lurking here for a while, posted a few times. I wanted to respond to this thread because my sister has been going through something very similar for the past 8 months. She developed skin rashes, similar to what you have described. Her PC sent her to a dermatologist, who tested her for allergies, and said he could find nothing wrong. He referred her to an endo, who initially diagnosed graves, based on bloodwork and because her eyes were swollen. Put her on synthroid, which did nothing, and the condition got worse. The endo then put her on high doses of prednisone, tapering down in a 3 month time frame. The rashes seemed to respond, but when the pred was stopped, they came back with a vengence, along with achey joints and fatigue. She then told my sister she was hypo, and started levoxyl. Skin rashes worsened. She was then referred to another dermatologist, who took one look at her and diagnosed her with Dermatomyositis. He took a muscle and skin biopsy from her neck area that had developed the rash, and the biopsy confirmed it. She also tested positive for scleroderma, (test was spotted??)Her sed rate was also elevated, indicatng inflamation. She has also now been diagnosed with Hashimoto's. Dermatomyositis is an auto-immune caused disease that attacks the skin and muscles. It's related to scleroderma and rheumatiod arthritis, as well as a few other conditions. It can be treated, although there is no cure. Do a google search for it, and think about mentioning the possibility to your doctor. Hope this helps.

    Windy

     
    Old 09-26-2003, 11:03 PM   #6
    akanick
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    I really appreciate the info windyblaze. I had not heard of dermatomyosits(sp?) and you are certainly right; the two conditions seem similar in many ways. I have an appt with a derm who specializes in scleroderma conditions so I will discuss this with her as well.

    Interestingly enough, my sed rate was normal, but it was the high ANA count that tipped off my derm and led to the rheumatologist appt. and battery of autoimmune tests. You mentioned your sister's biopsy confirmed the dermatomyotis but also mentioned scleroderma. Did she have other blood work done to test her ANA (anti nuclear antibodies) which can be an indication of an existing autoimmune disease? What about other autoimmune disease tests for systemic (diffuse) scleroderma in addition to lupus and sjorgren's syndrome to name a few? If not, please encourage her to do so especially because scleroderma can strike internally causing a myriad of very serious health problems including heart, intestinal, muscular and skeletal. I was in a panic when I was initially diagnosed, but fortunately I have what they refer to as morphea or localized scleroderma affecting the skin only rather than the internal organs.

    I am also all too familiar with prednisone. My husband was stricken with ulcerative colitis last fall(another autoimmune disease in the family, can you believe it!) and took it for about six weeks. It definitely saved him from having his colon removed, but it's a horrible drug to be on long term (heart problems, osteoperosis, mood swings, insomnia, etc). I've been told that cortisone injections might be something for me to consider for the localized scleroderma and perhaps your sister could ask about them as well for the dermatomyotis rather than staying on the prednisone long term...just a thought. Thanks again for your reply. All this is very helpful to me. I'll be holding good thoughts for your sis.

     
    Old 09-27-2003, 09:59 AM   #7
    redrvmom
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    Has anyone tested you for Lyme's disease? That comes after a deer tick bite with rash and terrible fatigue. This could affect blood sed rate too. Not doubting that thyroid is also an issue but that bite is suspicious. redrvmom

     
    Old 09-27-2003, 02:29 PM   #8
    Iwannalife
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    Didn't think they've had lyme disease on the west coast yet, but not sure. Hopefully just a coincedence(sp?). I never connected it with being hypo, but I did used to get a rash on both sides of my nose and between fingers. Someone told me it could be a vitamin deficiency and I've never had it again since I started taking tons of vitamins and minerals. Wouldn't hurt if you're not already, to take a really good B-100 complex, lysine(which cleared up a skin problem for my son), selenium for your thyroid, vitamin C & E. I take alot of other ones for my tired adrenals too. Magnesium really helps with muscles. I've never been good about eating healthy, so I'm sure I needed it all. I started feeling somewhat better about a month after I started all the vitamins. Don't just buy a multi-vitamin though, you need to take your calcium and calcium foods seperate from your vitamins. Can't hurt, might help. I had pretty much all the testing you did, except for the adrenals. They never found anything significant, "just thyroid problems". IWL

     
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