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Thread: New from Oregon strange AI symptoms

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    Default New from Oregon strange AI symptoms

    Hi everyone!

    DX with Hashimoto's in 2000, my thyroid is slowly dying and shrinking due to constant attacks. Still symptomatic. Previously treated for adrenal fatigue with cortef, and currently only on herbal supplements

    Three years ago I started walking and then running. Shortly after I started I developed pain in my hip. Icing and heat did not resolve the pain. Frequently when I would get up from my desk job, my hip would feel tight and then after starting to walk it would make a loud pop. After running and training, losing weight and feeling mentally better I started pursuing half marathons in which I would run roughly 8 miles out of the 13.1. However around mile 3 the hip pain would be awful. Eventually I stopped a little over a year ago to go to PT and get some treatment. Well the stretches and exercises made it less painful but I was never able to resolve it completely. No running or exercising complete rest for it. The pain comes and goes it seems. I live with it.

    Mid February this year, right after my 41st birthday I woke up feeling incredibly awful. While in bed I stretched my limbs as most often due when awakening. However something weird happened, my toes popped, ankles, knees, hips, shoulders, elbows, wrists, fingers...you get the idea. With every movement I made I made huge popping sounds. I went out to a festival and walked around as I would have normally done. I became fatigued, stiff and unable to spend much time on my feet. Went to see my doctor who ran tests for all the usual thyroid, IFG-1, Ferritin, RA factor, Antinuclear Antibodies, ANA, dsDNA, nRNP, SS-A, SS-B, Scl-70, Ribosomal P, C3 comp, C4 comp, RF factor. I dont completely understand the test results. My IFG-1 was high, I had 1:40-1:80 speckled, C3 was 153, C4 was 39.

    Dr fell ill and was unable to see me after requesting these labs.

    I found a new primary which is very western and doesnt completely understand my health issues. After pushing her she referred me to a Rheumy. Still same issues continued with no changes. Lots of pain, stiffness, fatigue, brain fog.
    Rheumy thought I might have human parvo, but I didnt test high even to be positive. He and the PCP decided I had fibro, but not any type of a classic case. Rheumy requested other tests in which I have not seen the results but he deemed me not having any other autoimmune diseases.

    Went to a new Rheumy at the end of May and again in June, had exam, xrays of all joints, and blood work. She dx me with Fibro and told me that I had multiple bursae that were inflammed through out my body and offered me cortisone injections if I wanted in the future. My test results were ALT & AST high, ANA screen A was 8 with a range of 0-10, SSA (Ro) was high at 117 with a range of 0-99. Thats all I got.

    6 weeks ago I added LDN to my thyroid regiment in hopes that it would help to clear up some of my issues if it was an autoimmune issue. I feel less swollen, but am still popping like a piece of popcorn. I hurt, need to lay down and rarely feel rested. I have NEVER had issues like this with my Hashi's and am kind of sick of hearing that it might be the reason. I need answers, and just about ready to get as many cortisone shots as I can handle in my body.

    Has ANYONE had symptoms like this? I feel like I am fighting another AI issue, I need direction and hope.

    Thanks ~J

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    hi julian,
    i cannot offer any advice....
    but i did want to say hi

    HI

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    Thanks Steve

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    I am going to try and answer some of your questions however I am in the middle of some brain issues so if I am not clear please forgive me. The one thing I want to say before I begin is that you will not get support here when it comes to natural cures. There are none and our goal is to make sure that the people that come here for help or information are clear on that and don't put themselves in more danger. This does not mean that we don't support taking care of yourself and your body. It simply means that we only discuss approved and proven medication.

    Your original diagnosis in 2000 brought y u into the world of AI diseases. Once that happens it is not uncommon to end up with multiple AI diseases as our body begins to attack different things. There are several of the different AI diseases (there are 63) that cause degeneration of different parts of the body, including the bones. Lack of vitamin D (which is also common in AI suffers), meds and degenerative arthritis can all be causes of bone issues. The good news is that your Xrays appeared to show no issues so that worry can be taken off the table. I have several bones in my body that click and I was told it was nothing to worry about although it is annoying.

    The other issues that you talk about... pain, fatigue, brain fog, etc can be symptoms of the AI diseases as well as fibro. Fibro is now accepted to be a real thing and people that have an AI disease and fibro often have a worse case of both. I have currently been diagnosed with 4 AI diseases and fibro and Some days the fibro is worse than the Lupus for me. According to the Mayo Clinic many of your symptoms can be explained by the Hashimoto's though. Their symptoms page is pasted at the bottom of this post. I really think the best thing to do is find a doctor that you are comfortable with and have everything looked into. Inflammation inside the body is nothing to play around with and the diagnosis of the bursitis confirms that inflammation. Please don't mess around with it because the damage that can be done if the inflammation is left unchecked is great.

    The last part of your posts was about the tests. The AST and ALT are liver tests although if they mean you need to be worried all depends on how high or low they are. I have had high on both for years and no one is concerned. They say it is from a fatty liver and we just watch it. The Anti Ro test is usually a sign of some kind of AI issues going on although you already know you have that. Whether it is a sign of something new like Lupus or not only your doctor can tell you.

    Hopefully this made sense and helped you a bit. Welcome to WHL. We really are glad to have you

    Symptoms

    By Mayo Clinic staff Hashimoto's disease does not have unique signs and symptoms. The disease typically progresses slowly over a number of years and causes chronic thyroid damage, leading to a drop in thyroid hormone levels in your blood. The signs and symptoms are mainly those of an underactive thyroid gland (hypothyroidism).

    The signs and symptoms of hypothyroidism vary widely, depending on the severity of hormone deficiency. At first, you may barely notice any symptoms, such as fatigue and sluggishness, or you may simply attribute them to getting older. But as the disease progresses, you may develop more-obvious signs and symptoms. Signs and symptoms of hypothyroidism include:

    • Fatigue and sluggishness
    • Increased sensitivity to cold
    • Constipation
    • Pale, dry skin
    • A puffy face
    • Hoarse voice
    • An elevated blood cholesterol level
    • Unexplained weight gain — occurring infrequently and rarely exceeding 10 to 20 pounds, most of which is fluid
    • Muscle aches, tenderness and stiffness, especially in your shoulders and hips
    • Pain and stiffness in your joints and swelling in your knees or the small joints in your hands and feet
    • Muscle weakness, especially in your lower extremities
    • Excessive or prolonged menstrual bleeding (menorrhagia)
    • Depression

    Without treatment, signs and symptoms gradually become more severe and your thyroid gland may become enlarged (goiter). In addition, you may become more forgetful, your thought processes may slow or you may feel depressed.
    When to see a doctor
    See your doctor if you develop these signs and symptoms:


    • Tiredness for no apparent reason
    • Dry skin
    • Pale, puffy face
    • Constipation
    • Hoarse voice

    You'll also need to see your doctor for periodic testing of your thyroid function if:

    • You've had thyroid surgery
    • You've had treatment with radioactive iodine or anti-thyroid medications
    • You've had radiation therapy to your head, neck or upper chest

    If you have high blood cholesterol, talk to your doctor about whether hypothyroidism may be a cause. And if you're receiving hormone therapy for hypothyroidism caused by Hashimoto's disease, schedule follow-up visits as often as your doctor recommends. Initially, it's important to make sure you're receiving the correct dose of medicine. And over time, the dose you need to adequately replace your thyroid function may change
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Notice the similarity to your symptoms with what Mari posted? Hashimoto's by itself can be devastating, even to the point of being life-threatening. You adrenals will suffer when you get "low". Under the guidance of my docs, we used Cortrex for about a year when I went "adrenal fatigue" from my Hashimoto's (I'd been undiagnosed for years). We also did low-dose prednisone with the Cortrex to get my adrenals some help. What are you taking and how much for your Hashimoto's? I'm on 175 synthroid and 20 cytomel. If yours is about "dead", you'd need similar or higher, except maybe the cytomel, where the dose is based upon how well you utilize the synthroid. Some use more, others less than me, with a goodly portion not on any. Some folks use Armour, which is the "real" stuff (pig's hormone). Low thyroid will make fibromyalgia worse, just ask my wife. As a side note, I'm a male, age 56 now, and I've been dealing with autoimmune stuff since before 1985. I was diagnosed RA in like 1991 or 2, and have been adding to the list, and sometimes subracting from the list, dependant upon which doctor I talk to, ever since... Good luck with it, and welcome to the forum. Be sure and check the "stickies" posts.
    Last edited by jmail; 07-21-2012 at 02:50 PM. Reason: hmmm, how do you sprell that word?
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    welcome i am sorry for what you are going through i have lupus and thyroid disease my thyroid has not been functioning very well for the last six months had they have had to increase my thyroxine dosage it can be very frustrating. i have had thyroid disease since age of 21 i am now 47. hope things get sorted for you soon.

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    Quote Originally Posted by jmail View Post
    Notice the similarity to your symptoms with what Mari posted? Hashimoto's by itself can be devastating, even to the point of being life-threatening. You adrenals will suffer when you get "low". Under the guidance of my docs, we used Cortrex for about a year when I went "adrenal fatigue" from my Hashimoto's (I'd been undiagnosed for years). We also did low-dose prednisone with the Cortrex to get my adrenals some help. What are you taking and how much for your Hashimoto's? I'm on 175 synthroid and 20 cytomel. If yours is about "dead", you'd need similar or higher, except maybe the cytomel, where the dose is based upon how well you utilize the synthroid. Some use more, others less than me, with a goodly portion not on any. Some folks use Armour, which is the "real" stuff (pig's hormone). Low thyroid will make fibromyalgia worse, just ask my wife. As a side note, I'm a male, age 56 now, and I've been dealing with autoimmune stuff since before 1985. I was diagnosed RA in like 1991 or 2, and have been adding to the list, and sometimes subracting from the list, dependant upon which doctor I talk to, ever since... Good luck with it, and welcome to the forum. Be sure and check the "stickies" posts.
    I was on 200mcg of levo up until 3 years ago, at that time I was dropped to 175mcg. At this time I also started Cytomel and was taking 25mcg along with my levo. Last year I was dropped to 150mcg based on lab results (FT's, RT3 and TSH) and down to 12.5mcg of Cytomel. Adding the Cytomel helped me and my symptoms.

    The new doctor I have had since March dropped me to 137mcg in May because my TSH was .20 (however I was still allowed to take the 12.5mcg of Cytomel). She is the type of doctor who only cares about TSH which is not how I roll, nor the best way to treat someone with Hashi's. My recent TSH results were .30 which caused alarm again and a message from the PCP office. Certainly they will drop me again and again urge me to go to one of two endocrinologists in Eugene. I dont want to see this guy, I need more personal treatment than what he offers.

    My Hashi's has been fatigue off and on, excessive weight gain and sluggish feeling off and on (gain feel bad, lose feel AWESOME), hair loss off and on, when I get sick, I get SICK. I dont do well with colds or flu's, it takes me days to recover. Those are the major issues I felt that Hashi's gave me.


    Did you read that I added LDN (low dose naltroxene) about 6 weeks ago? Taking this can improve your thyroid function, which is what I wanted, however I really wanted it to help with my multiple location brusitis and my belief it IS a new AI. I already take Cymbalta as an anti-depressant (but not a high dose), have tried amitryptaline, and a few anti-inflammatory which did nothing for my 'fibro'. I feel grateful to know that it is the swollen bursae that is causing the painful snapping but WHY do I have it and WHY all of a sudden? Is there something else I should ask for to help treat me for my issues? She ordered PT for me, that's it.


    Here are the issues I have had since High School

    • Anxiety and panic disorder 1985, treatment started 1989
    • Drug and alcohol problem treated in 1987 (self treatment for above issue)
    • Chronic hand tendonitis starts 1993 with cortisone shots in both hands
    • IBS 1995 (most likely just gluten sensitivity)
    • RH Negative, used rhogam (sp) during pregnancy
    • Group Strep B found during pregnancy treated with antibiotics
    • First child born 1997
    • Hashimoto's 2000
    • Second child born 2002 - same issues as above RH Neg and Strep B treated
    • Partial Hysterectomy 2006 dx uterine polyps, endometriosis and excessive bleeding
    • Left hand tendon release 2008 (I am right handed)
    • Adrenal Fatigue- not mild but not horrible 2009
    • Dry eye's with the suggestion of punctal plugs 2010
    • Fibro 2012
    • Rosacea (sp) 2011



    I will take ANY help or advise I can get my hands on. I spend hours each night searching message boards and the web to find someone else who has these issues, and I am getting nowhere FAST.

    Thanks everyone

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    Juliann,

    Your search is over! I too have a severe case of Hashimoto's disease. It is frustrating! Our problem lies in the fact that endocrinologists are the specialists who treat this disease and not rheumatologists. I have come to this on my own after three years of trying to find a diagnosis and treatment. Unfortunately, I have found no endocrinologist who will treat this as the autoimmune disease it is. They only want to replace the hormones that the destroyed gland no longer produces. When sent to a rheumatologist by my PCP, she told me that they do not treat the immune response to this disease. I asked her why, and her response was "I honestly don't know." Makes no sense to me, but I have yet to find anyone who doesn't adhere to this antiquated practice. I am convinced I also have Lupus, but the rheumatologist says all my symptoms are due to Hashi.

    My symptoms:

    Pain in hands, and feet -- like I slapped something really hard
    Weird red and white splotchy colors on my hands
    Tinnitis
    Overwhelming exhaustion most of the time
    Painful joints -- especially hands and knees, and most recently my neck
    Seizure-like episodes, non-epileptic in nature and most resembling partial seizures
    Dry eyes with inflammation behind them (new)
    Extremely dry mouth during the night -- like it feels as though my skin is going to tear if I try and move my tongue
    bone spurs in my feet
    low vitamin D
    high blood pressure -- out of the blue -- I've always had relatively low blood pressure

    This is the current list. There are symptoms that have fallen by the wayside -- I have only had two seizure-like events since beginning my thyroid hormone replacement. But new symptoms seem to occur out of the blue. My latest is the eye issues. The vision in my right eye has gotten terrible. At the last check-up, my eyes were about equal. In a year's time, my right eye needs twice the strength of correction as my left, and the eye doctor diagnosed chronic dry eye and inflammation consistent with autoimmune disease. The dryness and pain in my left eye is getting quite painful.

    I am on 125 mcg of Synthroid and 10 mcg of Cytomel. We have had to increase it about every six weeks since I began it in February. I had bloodwork done last week, and that is the first time she has said not to increase it but to stay on the same dosage.

    I can't give you much to go on, unfortunately. It appears we are in the same boat. But, sometimes a partner to row with makes the rowing seem easier. Hang in there, and keep in touch. I'm about to go to another rheumatologist. I'm looking for someone who doesn't stick just to the blood work results but treats according to symptoms. Right now, I have only a high ANA -- no other tests were conclusive for AI. I have some lesions on two fingers of each hand, and bone spurs in both feet, but she doesn't seem to think that those xrays, the ANA, and the Hashi diagnosis are enough to treat me for AI.

    Maybe someone will do some research on treating Hashi as the true autoimmune disease it is and not just as a hormone deficiency. Until then...

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    jolynnhughes, you probably already know this but the super-dry eyes and mouth as well as many of the other symptoms can be indicative of an AI disease called "Sjogren's Syndrome" - if you haven't Googled it already, please do. It can sometimes cause bone spurs, too - usually in the mouth, but I have heard from people who had them elsewhere, too. The weird splotchy skin (if it's what I am imagining, though many things cause odd-looking skin...) is called Livedo Reticularis and often IS indicative of autoimmune disease - particularly a blood disorder called Antiphospholipid Antibody Syndrome (APS) - though it can also indicate things like Raynaud's Syndrome or Rosacea or a number of other circulatory issues. The test for APS is pretty simple, though it's expensive and not something they normally do just because you ask for it.

    I am not a doctor, but sadly I do have personal experience with most all of those...I am sure it's only a tiny part of the list of possibilities, but those are the particular ones I am familiar with, so I mention them in case the information is helpful to you.

    I would think that with the sum total of all your symptoms, a good Rheumatologist would do more testing and at least try you on Plaquenil and/or steroids for a while to see if you respond. Lots of people are "sero-negative" for Lupus or Sjogren's (meaning it never shows up in their bloodwork) but end up being diagnosed on the basis if symptoms and responsiveness to treatment, Sadly, many doctors won't diagnose or treat anything unless the blood tests are all conclusively positive. It often ends up being a long, hard road for the unfortunate folks who have the diseases but are sero-negative. I hope that is not the case for you....but don't stop pushing for investigations and treatment - you know that SOMETHING is wrong, and you deserve help so you feel better!!!! Just because it isn't one thing, doesn't mean a doctor should write you off and say "oh, live with it". Educate yourself, ask for what you need, and keep searching until you get relief.

    I am sorry you are suffering...it can feel very lonely. We are here for you!!!!

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    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?
    "There but for the grace of God, go I."
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