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Thread: I don't know what is going on with me. . .

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    Default I don't know what is going on with me. . .

    I have had so many strange symptoms over the course of years. Some I've gone to a Dr. to figure out what's going on, others I've shrugged off as being weird random things.

    About two months ago I went in to see my Dr. because I felt so tired, my joints hurt and my elbow was visibly red as well, and I was having a lot of visual issues (photosensitivity, and barely being able to see out of my right eye sometimes at night) as well as frequent dizzy spells - not room spinning dizzy but feeling off balance.

    She referred me to see a Neuro & Rheumy after a positive ANA screen (1:2560, Speckled). I have completed both Appts and feel more lost than I did before all of this.

    The Neurologist concluded I do not have MS and seem okay for the most part Neurologically. He could not explain my visual issues, or dizziness but does not think it's due to MS.

    The Rheumatologist ran a lot of tests, which have all come back negative other than my ANA being positive again but this time it shows a high titer of SPECKLED and SPINDLE patter. Not sure what the spindle pattern means, and am unable to come up with much about it through searching online.

    From all of the reading I've done online, I am fairly certain I will receive no diagnosis because my other antibody tests came back within normal ranges. The only abnormal tests I have is low T4 (thyroid) and a positive ANA. No one seems concerned about the thyroid because my TSH isn't high so that isn't being looked into any further.

    I don't necessarily want a diagnosis, although it would help me feel less crazy. What I would like is to stop feeling so crummy. The symptoms (I'll list them down below) have been going on for years, off and on, one stops another starts or new ones start. With no diagnosis, I am finding I receive no treatment as well.

    *Dizziness (as mentioned before, feels more like I am drunk of off balance, not room spinning)
    *Heart Palpitations
    *Sore, Stiff and Red Joints (Knee, Shoulder, Elbow (where redness occurs) & Hip and occasionally my Wrists)
    *Fatigue
    *Difficulty Swallowing (feels as though food is stuck in my throat at times)
    *Visual Problems (Photosensitive, and in dim light loss of vision in right eye at times)
    *Chronic Pain in Cheekbones
    *Thyroid Nodules
    *Weight Gain (30lbs in less than one year with no change in diet)
    *Frequent Hives on my Face
    *Pink to Red Cheeks, which look a lot like a Malar Rash (Rheumy noticed this, but did not call say I have a Malar Rash so I am not going to say I have it)
    *2 Elevated ESR tests in the past (although most recent is in normal range)
    *2 Positive ANA Screens (SPECKLED & SPINDLE PATTERN) Recently
    *Abnormal T4 (TSH is Normal which rules out Hypothyroid)
    *Anemia (currently not an issue, but have had several blood panels in the past few years come back with low hemoglobin)


    There is probably more, that is just off the top of my head. I tend to forget some symptoms and they pop in my head later on. This often happens to me at Dr. Appts.

    Does anyone have any insight, have had similar symptoms and if so were you given a DX?
    Last edited by jennifer32; 09-13-2012 at 12:02 PM.

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    This doesn't answer your question, but I'm curious: have you ever had your thyroid antibodies checked (TPO & Thyroglobulin antibodies)? Hashimoto's thyroiditis would be indicated by having high titres of those antibodies, and Hashimoto's can also sometimes cause elevated ANA. Usually, if Hashimoto's was causing you to by hypothyroid, your TSH would be high, but nothing is 100% in medicine because human bodies are crazy complicated. Also, do you remember what the actual measure of your TSH was? Older standards allow a broader range of normal for TSH than newer standards.

    Also, did they check to see if your thyroid was enlarged? When I had Hashimoto's flare up, my first symptom was that I felt this weird feeling like there was something stuck in my throat, but it was actually my thyroid having grown quite large into a goiter. From my experience, a lot of your symptoms could be related to Hashimoto's and/or hypothyroidism.

    (Disclaimer-- I am not a medical professional. I am simply a person who has had Hashimoto's, and my thoughts here are based on my own experience.)

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    Hi Derrie, thanks for the response.

    I do have a multinodular goiter in my right thyroid lobe. I have had two biopsies performed as it continued growing for several years but seems to have stopped.

    Here are my thyroid test results:

    8/21/07 - TOTAL T3 - 254 (REFERENCE RANGE 80-180NG/DL)
    8/21/07 - T4, FREE - 0.9 (REFERENCE RANGE 0.8-2.2 NG/DL)
    8/21/07 - TSH - .26 (REFERENCE RANGE 0.3 - 5.00)

    8/1/12 - T3, FREE - 3.9 (REFERENCE RANGE 2.8 - 5.2 PG/ML)
    8/1/12 - T4, FREE - 0.7 (REFERENCE RANGE 0.8 - 2.2 NG/DL)
    8/1/12 - TSH - 0.586 (REFERENCE RANGE 0.3-5.00)

    I have been seeing an endo since 2007 when the goiter was first abnormal labs came in. He has monitored the goiter, and ordered the biopsies but nothing else has been tested or done besides what has been listed here.

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    Quote Originally Posted by jennifer32 View Post
    Hi Derrie, thanks for the response.

    I do have a multinodular goiter in my right thyroid lobe. I have had two biopsies performed as it continued growing for several years but seems to have stopped.

    Here are my thyroid test results:

    8/21/07 - TOTAL T3 - 254 (REFERENCE RANGE 80-180NG/DL)
    8/21/07 - T4, FREE - 0.9 (REFERENCE RANGE 0.8-2.2 NG/DL)
    8/21/07 - TSH - .26 (REFERENCE RANGE 0.3 - 5.00)

    8/1/12 - T3, FREE - 3.9 (REFERENCE RANGE 2.8 - 5.2 PG/ML)
    8/1/12 - T4, FREE - 0.7 (REFERENCE RANGE 0.8 - 2.2 NG/DL)
    8/1/12 - TSH - 0.586 (REFERENCE RANGE 0.3-5.00)

    I have been seeing an endo since 2007 when the goiter was first abnormal labs came in. He has monitored the goiter, and ordered the biopsies but nothing else has been tested or done besides what has been listed here.
    Well, honestly with a TSH on the low end like that, you'd be more likely to be hyperthyroid than hypothyroid.

    There is also an antibody that causes Grave's Disease, which causes hyperthyroidism. I don't know much about it. I think it could be worth having all those thyroid antibodies checked, but since you're under the care of both an endocrinologist and a rheumatologist, you think they'd be on top of that.

    Did your rheumatologist give you any explanation for why you might have a positive ANA and those symptoms? Did he suggest any sort of treatment? You can have an autoimmune disease without having specific antibodies showing up, but they just may not be able to give it a name. I've never had a positive antibody test with my current AI disease, but from skin biopsies, low C3 and C4 levels, and my symptoms, my rheumatologist decided to try me on Plaquenil to see how I responded. It's a pretty low-side effect drug. It ended up helping my rash and blepharitis (eyelid swelling), but unfortunately, the pain carries on.

    And did you rheumatologist let you know when to follow up with him? Do you have any symptomatic relief for your pain, like NSAIDs?

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    hi jennifer,
    sorry i cannot help.........
    but i wanted to say hi


    hi

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    Quote Originally Posted by jennifer32 View Post

    I don't necessarily want a diagnosis, although it would help me feel less crazy. What I would like is to stop feeling so crummy. The symptoms (I'll list them down below) have been going on for years, off and on, one stops another starts or new ones start. With no diagnosis, I am finding I receive no treatment as well.
    Amen to that. I felt like that so frequently. Even now with the diagnosis, I still get moments where I cry in the shower because I don't care how its done, I just want to feel better.
    I think thats something we can all relate to and I'm sorry you have to go through it. I know it isnt fun.

    I think that Lupus and auto immune diseases may be some of the hardest things to pin-point. It took me 3 years of going to a specialist after specialist. Each one treating a different problem.

    You need to find a rheumatologist who will listen to you. I don't have positive antibodies. Just a postive ana and other inflamation markers. some mild kidney issues (which are recent) and I was given a diagnosis. Its all about having someone look at the big picture. If it looks like a duck and quacks like a duck, I'm going to count my losses and say "hey check out that duck!"

    Doctors don't work that way due to the similarity of all the AI diseases. Be patient, stay positive. You may need to doctor shop. There is no shame in getting a second opinon.

    Good luck! Let us know how it goes.

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    Thank you for all of the replies!

    So the Rheumatologist had his nurse call me this morning. She said there is not enough to say for certain I have an autoimmune disease. He did not run any thyroid antibody tests (ugh) so I won't know for now if this is Hashimoto's or Graves. Everything I've read online suggests that a LOW T4 and LOW TSH indicate an issue with the Pituitary Gland, or possible they Hypothalamus. But it seems these are more rare. Apparently my CH50 Complement test came back abnormal, but on the high end not low end (she said low is what you'd see in AI diseases). No explanation of why it might be running high?

    She did mention they'd like to do another MRI on my brain, this time with contrast. Apparently there is a 7mm cystic appearing mass in the Choroid Plexus.

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    If it makes you feel any better you are not alone in what you are going through. For many with AI diseases (although I cannot say that is what you have because I am not a doctor) it takes months or even years to get a diagnosis. Oh how we wish there was a test to say "Yes you have Lupus or no you don't). Here is the link for Criteria Needed to Diagnosing Lupus. The problem with diagnosis Lupus is that basically they have to discount every other reason for your symptoms before they are willing to say it IS Lupus.

    Don't give up. You know your body better than anyone else and you have to keep pushing. Remember that the doctor work for you, you don't work for them! If they are not helping fire them and get a new one.
    Mari

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

    ~Winston Churchill~







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    I made an appt with a new endocrinologist. The appt wasn't supposed to be until next month, but I was put on a cancellation list and got in this morning.

    She mentioned my pituitary gland straight away when I brought her in my most recent labs. She said she is going to be running a panel of labs to test the function, and also is having them look closely at the upcoming MRI.

    She also mentioned that my PCOS might be causing some of the abnormal levels and causing issues with the binding hormones. I don't think I mentioned earlier I was diagnosed with PCOS years ago, around the same time my thyroid nodules were found.

    More appts, more labs. Hoping to get to the bottom of this.

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    Jennifer,
    Hi and welcome to WHL. Many people with AI issues can be sero-negative (blood tests don't show anything).
    You seem to be on the right track with the endocrinologist. She seems to be interested and helpful.
    My daughter has been dealing with PCOS. She was treated with met-formin (sp?) and hormones.
    Once she also got treated for her gluten sensitivity she was finally able to get pregnant - yay!
    Good luck with the new doc.
    Hugs,
    Marla

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