Discussions By Condition: I cannot get a diagnosis.

Still Undiagnosed

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: kathy82293
  • October 11, 2007
  • 07:49 AM

After several years and several doctors, I am running out of ideas. So here I am! I have already been diagnosed with Hashimoto's Thyroiditis and am currently being treated with Armour Thyroid. All of my blood work comes back normal, but here are my symptoms:
Chronic Depression
Difficulty swallowing food (feels like the food gets stuck 1/2 down throat)
Pain in hip joints
Pain in finger joints
Occasional purpura (flat purple spot) located between my nose and upper lip. When this occurs, I have a flare up of tight skin on my upper arms that becomes very dry and itchy. Occasional granule-like things under the skin in the same area of my arms. Once I had it biopsied and was told it was "nothing".
No tolerance to exercise.
Fatigue.
Brain Fog.
Again, all of my blood work comes back just fine so I guess I'm supposed to be fine.:confused:
I've been tested for lupus, RA, scleroderma and all the other usual suspects. Nothing. So if anyone out there has any thoughts, I would really appreciate your help. I'm super tired physically and super tired of doctors looking at me like I'm nuts...thanks! Kathy

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11 Replies:

  • what is your age?
    Anonymous 42789 Replies
    • October 11, 2007
    • 09:00 AM
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  • Go to this web site and look at the pix http://dermnetnz.org/lesions/index.html
    rad-skw 1605 Replies
    • October 11, 2007
    • 09:19 AM
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  • I am 46 years old. I looked on the link for the skin lesions, but I don't see purpura. The purple spot on my face is under the skin and looks slightly like a bruise, but less dense. Are there any other skin photograph links that you know of?
    kathy82293 3 Replies
    • October 11, 2007
    • 08:28 PM
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  • You're perimenopausal. I suspect your hormone imbalance involves more than just your thyroid. Try seeing a doctor who measures and Rxs bioidentical hormones. There are a lot of good books on this as well. 35 Symptoms of Menopause
    Anonymous 42789 Replies
    • October 11, 2007
    • 08:33 PM
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  • Every hormone has been checked and rechecked. I've educated myself on value ranges and there are no borderline values. I'm on Armour Thyroid which is not synthetic but is bovine thyroid...my thyroid levels T3 T4 Free T3 Free T4 TSH are all within range. And as far as feeling badly from my thyroid, I don't think that's what it is. Any other ideas?
    kathy82293 3 Replies
    • October 11, 2007
    • 08:46 PM
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  • I'm talking about progesterone, estradiol, DHEA, pregnenolone, testosterone - the hormones regular doctors ignore, along with cortisol levels and adrenal functioning. They make a huge difference in the way your body operates. And, if one is out of whack, like thyroid, there's a greater chance that others are too.
    Anonymous 42789 Replies
    • October 11, 2007
    • 08:53 PM
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  • Granuloma annulare is a small bumpy rash, sometimes, that has been associated with diabetes. Go back to that same web-site.
    rad-skw 1605 Replies
    • October 12, 2007
    • 11:33 AM
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  • Has your CPK level been checked? You could have Dermatamyositis or Polymyositis.
    Anonymous 42789 Replies
    • October 12, 2007
    • 08:11 PM
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  • Hi Kathy!!!!!!Have you heard of Hashimoto's Encephalopathy? It's a complication of the thyroiditis that can cause a wide variety of symptoms and looks different in each patient depending on what particular symptoms THEY get. Here's sort of a master list of what can go wrong:profound fatiguemigraine-like headachesbalance and coordination problemsproblems in cognition and/or consciousness (mild case is "brain fog"- worst case is coma)seizures (I don't have them) or myoclonic jerks (leg and arm or whole body jerks)language and speech problems- problems with word findingsleepinessothers... a lot of the symptoms can mimic depressionThough a lot of patients who develop it have normal thyroid hormone levels, about one third to one half of patients who have it already know they have the thyroiditis. I was diagnosed in April by elevated thyroid antibody levels (which you have in Hashimoto's thyroiditis). My hormone levels were normal the whole time I was sick. My 8th neurolgist diagnosed me. I spent years being told it was psychosomatic. It's not!!!!! There are now 139 articles on it in the medical literature (go to Pub Med and type in Hashimoto's encephalopathy and you can see the list of journal articles in the medical literature).Like you, I also have problems swallowing, although I don't have a goiter. I'm not sure if it's from all the swelling in my neck from the inflamed thryoid or if it's another neurological complication.I have also developed dry scaly skin on my upper arms since I developed the neuro symptoms, as well as cystic acne. These symptoms magically went away when i went on steroids, which is the treatment for the encephalopathy. About half of patients with HE have normal rheum labs. I have a normal erythrocyte sedimentation rate as well as a negative ANA. Interestingly enough though, I have a mottled appearance of my skin and my hands turn purple in the cold, which are both autoimmune symptoms (livido reticularis and raynaud's phenomenon, respectively).Hashimoto's Encephalopathy is also known as SREAT- steroid responsive encephalopathy associated with autoimmune thyroiditis because it gets better with steroids, especially if treated early. Most endocrinologists and rheumatologists don't know about it- it is mostly recognized by neurologists. Your thyroid antibody titer levels do NOT correlate with disease severity other than they need to be positive for diagnosis.I went on a 3 week pulse and taper of oral steroids (prednisone 80 mg for 3 days) in May. Though I felt awful while on the steroids becasue they make you low thyroid, after I got off of them, I felt like a new person. I thought for sure I was headed for a wheelchair from the fatigue prior to going on the steroids, but now I can go on 8 mile hikes!!!! I am mentally sharper now and have stopped using my cane. My fatigue is gone except for some mini-relapses here and there but they only last one day! The only thing that came back in full force is the upper arm skin problems and the acne.Please find yourself a knowledgible, reputable neurologist- perhaps one recently out of residency who has heard of HE and can diagnose you. I strongly suspect you have at least a mild case of HE/SREAT.Let us know how it goes!
    Anonymous 42789 Replies
    • October 12, 2007
    • 11:16 PM
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  • Hi Elke. Thanks so much for your input. I had thought some time ago that H.E. could be a possibility, but I haven't had seizures or severe ataxia or anything like that. How bad was your experience with the steroid treatment? Also, I was wondering if you could describe to me the upper arm skin problem. Mine is located over the triceps, very tight, very slightly shiny and itchy like heck. Then I get some of these itchy bumps on my shoulders that seem to have granules in them. Did you ever experience purple blotches on your face anywhere? Mine show up for a day or two and then go away and then the onset of the skin problem starts. Someone else mentioned Polymyositis and Dermamyositis. My doctor had said that a muscle biopsy was next on the list so I guess they can rule those in or out soon. Are you in California or elsewhere? I need to consider a few different neuros because I just can't keep dealing with doctors that won't take the time to take me seriously. There is one good one here in So. Cal, but he's been around awhile, so he might not be real open to new information. :rolleyes: Thanks! Kathy
    kathy82293 3 Replies
    • October 17, 2007
    • 04:26 AM
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  • Hi Kathy!Good to hear from you. I'm glad you've heard of HE, as it may or may not end up being an explanation for your neuro symptoms. My case was fairly "mild" in that I never had the worst-case symptoms of seizures, psychosis, or coma. I mostly had profound fatigue, balance problems and clumsiness (mild ataxia), profound headaches, and more subtle things that came and went like periods of confusion, mild focal deficits, mild myoclonic jerks for a short time, and occasional tremor. My neurologist wants to add my case to the literature because she suspects that HE can present more mildly than what has been reported so far- that we don't all need to have seizures or be in a coma to have HE. Diseases tend to run on a continuum from 'very ill' to 'not so ill' and so this would make sense that there are milder cases.I'm not sure what your skin lesions might be. They sound more severe than mine. I just have rough patches on my upper arms that responded to steroids- they were not itchy like yours though. And I also seemed to develop something that looks like cystic acne-but isn't, on my face. I do not know that these are related to HE. So far, I haven't seen anything like this in the medical literature on HE, but have noticed that other patients with HE have complained about it, so I somehow don't think it's a coincidence but have no proof. I do not know if other people's spots are purplish like yours or not, though. Have you seen a dermatologist-perhaps one at an academic center? I do not know what your spots might be but wish you luck in getting it figured out.Another thing I noticed on the steroids was that I had an ever so slight lilac discoloration/broken capillaries on my eyelids that cleared up. I do not have dermatomyositis, though, which is usually the diagnosis associated with lilac eyelids. As you are probably aware by now, people with Hashimoto's thyroiditis are at risk of having other autoimmune diseases including dermatomyositis. So it is good that your doctor is checking into it. I think you can also get a rash shaped like a shawl pattern on your shoulders and back with dermatomyositis. I hope your doctors will figure it out for you.Hmmm, I am not sure I know of any neurologists down south. Though I'm from San Diego and my family is still down there, I'm up in Davis/Sacramento now and that's where my doctors are. It took me 8 neurologists to get my diagnosis of HE. The doctor who diagnosed me is Vicki Wheelock at UCDMC. She's a movement disorder specialist and sees mostly Huntington's disease patients but I was referred to her by a general neurologist to see if it would be worthwhile to shell out $5000 for genetic testing for hereditary ataxias since that was on my differential diagnosis list. I guess ataxia is considered a movement disorder. It's sort of a fluke that i got in and finally got diagnosed after so many years.It seems to me that last time I saw her, she mentioned that she has a colleage that I think may be down south, who has also noticed neurological problems in patients with thyroid disease (not related to the hormone levels)- someone who acknowledges HE. Unfortunately, I don't recall her name so I can't give it to you. I'm thinking your best bet may be to go to an academic center such as UCLA or UCSD neuro clinic if your insurance covers it. That's just based on my experience of finally getting answers at UC Davis. However, I should mention that 3 of the 8 neurologists I saw were also from UCD and they essentially told me my symptoms were psychosomatic. I also went to the neurometabolic clinic at UCSF at the same time I saw Dr. Wheelock. UCSF hadn't thought of HE either, but I did make them aware of it after the fact and they were very open-minded and actually agreed that it was my diagnosis after looking into it. So, it might be a bit hit and miss. It is extremely unfortunate that getting a correct neurological diagnosis is hit or miss! There is nothing worse than running (or more likely crawling) along with neuro symptoms and no diagnosis! Aack!!! But you deserve to know what is causing your symptoms. And it sounds like you need to rule out the other illnesses you mentioned.It's kind of a tough thing, HE,because it is so new. Most neurologists don't know about it yet. And then thyroid antibodies are common, so you have to really make sure that it's not something like MS or other things. In your case it's quite possible you also have dermatomyositis or something else. A good neuro should tease it all out for you.As for the steroids, I found out the hard way that they drop your TSH level and also block the conversion of inactive T3 to active T4 hormone. I got really sluggish and mentally slow on them. I wasn't eating or pooping, etc either. I had a lot of the symptoms of hypothyroidism and sure enough, my TSH had dropped from 1 down to 0.48 on the steroids. I don't know if it's because the steroids have a short half life or what, but I would feel better in the evenings (I took my prednisone in the am). And I didn't feel "cured" until after the 3-week prednisone pulse and taper ended. Though I have always had normal TSH values, I've had low thyroid symptoms for years. About two months after the steroids, i finally got in to see an endocrinologist for the first time and she put me on levoxyl to suppress my thyroid and keep my TSH at 0.5. I have felt really great now after the steroids and on the thyroid medication. So, if you do get diagnosed with HE and placed on steroids, make sure your neurologist knows they drop your TSH and i think block the conversion of T4 to T3. You may even need to coordinate this with your endocrinologist. I love my endocrinologist because she tries to keep my TSH on the low end of normal. For me it only takes 50 micrograms of levoxyl to keep my TSH at 0.5. Levoxyl is T4, though, so I don't know what to do about the conversion to T3 on the steroids. If you end up getting diagnosed with HE and put on steroids, you may just need to put up with the hypothyroid symptoms for 3 weeks or whatever. It put a serious dent in my school work, so be careful.I don't know what your final diagnosis or diagnoses will end up being, or how you will respond to steroids if your neurologists do think you have HE, but I wish you the best of luck. For me, my diagnosis and treatment have made a dramatic improvement in my life. For the first time in years, the vibrating weakness in my legs went away. I used to be in tears pounding on my legs trying to get them to wake up and now they feel normal. So, the correct diagnosis is everything. Don't give up until they have explained all of your symptoms and your diagnosis makes sense to you. It's possible that you have more than one thing going on, too. Hopefuly someone smart will figure out your case.Please keep me posted!Best Wishes and hope you feel better soon.-Elke
    Anonymous 42789 Replies
    • October 17, 2007
    • 06:11 AM
    • 0
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