Have Hashimoto's, but many other symptoms make me suspect something more is going on...
My story is almost 8 years in the making, so I will try to be as brief as possible! Bottom line - I am trying to figure out if all these symptoms are only due to my thyroid??? I wasn't diagnosed with Hashimoto's until about 4 years into my symptoms.
First "Flare-Up" - July 2002
Became extremely dizzy at work completely out of the blue. Symptoms over the next 4 months included cloudy/blurry vision, inability to concentrate/focus, severe muscle achiness, weakness in legs (felt as if legs would give out when walking or standing), tingling on right side of face & right arm, shallow breathing & chest tightness, pain around eyes. I didn't drive for 6 months due to the dizziness and blurred vision.
Symptoms improved about 50-75% over next 3 1/2 years.
Second "Flare-Up" - March 2006
This started the same way - I became extremely dizzy. Over the next 5 months I experienced the following symptoms: overall weakness (especially legs), felt as if I was going to pass out, intense leg pain that made it hard to walk, numbness/tingling in the front of my head and behind my eyes, blurred vision, cognitive difficulties (hard to talk or find the right words), general feeling of being out of it, extremely stiff leg muscles even though I wasn't exercising them, inability to do anything strenuous, noticed small "electrical shocks" very randomly across my body (felt like little bug bites...would even wake me up at night).
Again, had about 3 years where things were somewhat improved. However, during this time, I was diagnosed with Hashimoto's Thyroid Disease and began T4 & T3 replacement. Earlier blood tests did not show Thyroid disease, so I don't believe it was related to the earlier two "flare-ups".
Third "Flare-Up" - January 2010
Experienced the most intense and frightening migraine-type headache that came on suddenly. The pain was almost unbearable; however, it just lasted a night. Not sure if there is any significance to this, but my third flare-up started about 6 weeks later. Symptoms this time have been more intense and include: very weak hands, wrists, and arms (hard to type and write), pins & needles in my finger tips, weakness in my legs, very stiff legs and shoulders, skin hurts to touch around legs and arms, frequently dropping things, lack of fine motor skills, slight urinary tract infection, burning/numbness in arms and legs, shallow breathing, swollen tongue, dizzy & disoriented, feeling as if someone is pushing down on me (heaviness), difficulty in standing (using counter to hold me up while cooking dinner), numbness in left foot, facial weakness (feels weird to talk), etc.
I am a 34 year old otherwise healthy woman, 125 lbs. I was a senior manager in a very large corporation, have my MBA, etc...but have completely scaled back in the last year and a half in hopes that my health would get better. I moved out of the city to a small town, quit my stressful job in favor of a much less stressful position. I have had 3 MRI's (that have been "normal") over the past 8 years and many blood tests that have shown some increased auto-antibodies, high eosinophils, decreasing RBC, WBC, and platelet counts (although still within range). My most recent neurologist wrote me off in 5 mintues as probably having Fibromyalgia or CFS in addition to the thyroid issue. MS has also been suspected (although MRI's have been normal). Can all of this be due to Hashimoto's?
- Yes, Hashi can do all of that in some people. I believe yours would be an extreme example, but your not the only one.
Although the term Fibro is used rather loosely, usually the difference in body pain with Fibros is they feel pain with just slight contact (light touch) of certain areas. These areas have a defined location too. - is this you?
Hashi body pain is more deep in the muscle, but like your saying, weakness and pins/needles feeling can set in too. Usually these people are finally relieved most by T3, which you have tried though.
In addition to thyroid, and antibody tests (as suggested by smilerdeb), have you had fasting blood glucose tested? Lyme disease too. Any gluten issues?
I have Hasimoto's, still trying to get it under control. dx's 4 years....i have all the muscle and vision problems you talk about..plus a few of my own "personal" issues, we're all a little different. my t3 is on the low side, near the bottom of the in range labs. Make sure your dr. is looking at these.as the posts above mentioned; TSH, TF4, TF3, and both antibodies..you can feel that bad even if your on replacement thyroid, if it isn't enough...sounds like you've had many other tests, but you KNOW you have Hashimoto's!
I went to my GP and she's smarter then I thought.. she told me Fibromyalgia is just a idiotic term that doctors throw out there when they don't know what else to call it!!
Pursue these test SmilerDeb is telling you it could make a difference. I have had many of your symptoms when my levels are off. I was pretty much debilated because of the pain/weakness/numbness etc and it was my thyroid levels. I thought I had MS, Lupus, Lymes, RA just to name a few but was ruled out. Well hopefully the lymes will be Monday!
I have Hashimotos's and Lymes with a lot of problems. You mentioned that you have high eosinophils. I believe that eosinophils are high due to parasites. Please double check on that and do get a Lymes Western Blot.
Wow - thank you for all the great comments! My latest labs are as follows:
TSH 1.44 (Highest reading was 3 years ago at 142.25)
Thyroxine Free .73
TPO Auto Antibodies 394
I have compiled a spreadsheet of my lab results over the past several years, and although my TSH has been within range for quite some time, I seem to feel better when it is under 1.0 (so a change in my T4 may help). I have also noticed that my TPO Auto Antibodies continue to rise with each blood test. My glucose has been borderline high in the past, but currently normal. Of note, I don't seem to retain Vitamin D well. I was doing ok on 5000 IUs per day, but had to recently jump to 7000 IUs because the levels were dropping again. Not sure if this is significant, but my WBC, RBC, and Platelet counts have been on a downward progression for years (still within range though). I had a test for Lyme (and many other infectious diseases) 7 years ago, and everything came back negative.
Yes, I have some of the symptoms all the time, although usually mild enough that I can deal with moderate day-to-day activity. However, I have had several flare-ups, one of which I am in the middle of now where the symptoms are very bad. I have had three really bad flare-ups that have lasted 4-6 months each, over the past 8 years. Since I was diagnosed with Hashimoto's only about 3 1/2 years ago, and my thyroid levels are currently in range, I am having a hard time believing that these symptoms are only related to my thyroid issues. The dizziness, faintness, and weakness comes and goes at different times each day. Sometimes I have a hard time typing in the morning (due to hand weakness), or driving at night (dizzyness), or standing to cook dinner (leg weakness/faintness).
I have the same symptoms as you. I've had them for 3 1/2 years. I have Hashimoto's and suspect that is causing all of this. I've been to numerous specialists and they have not found anything else so I keep going back to Hashis.
I noticed on another forum, another person with Lyme disease had all the same symptoms and it took 7 years for a diagnosis. I definitely think it's worth a try to have the three tests that LazyMoose talks about above. Thanks for the advice!
Unfortunately, when testing for Lyme it's like trying to literally find a needle in a haystack. IF you do show positive, it's merely because one was incredibly lucky the bacteria was found. See...it loves to hide in cell walls and does not prefer to float around in the blood stream. It's also morphs which makes it harder to find.
Do I know waaaaay too much about this stuff? You betcha! You would too if there were three in your household who had it and all at the same time!
The reason i asked about the dizziness, faintness..etc is because these are all signs of "panic attacks" due to Anxiety and boy do i know them all to well. Because I have been there, i will advise you to consult with a psychologist to rule out Anxiety Disorder. Most of the symptoms that you have mentioned, i've had.... and they were very severe, It is a fact that anxiety is a symptom of hypothyrodism.
Are you being treated for migraines? They can sometimes cause or mimic "mini-strokes", otherwise known as transient ischemic attacks (TIAs). Typically, TIAs don't result in any permanent damage, so if you're still experiencing numbness on one side of your body, it's not likely that you had a TIA. How often do you have headaches or experience pain in your head?
Eosinophilia isn't a really specific indicator of anything except a potential parasitic infection. It also indicates inflammation (do you have bad allergies) and is a symptom of a number of diseases/conditions: Crohn's disease, lupus, lymphomas and certain leukemias, Churg-Strauss Syndrome, or even a drug allergy. Chances are, if you have Hashimoto's, you may have or be developing another autoimmune disease...like lupus. If you haven't been tested for this yet, I strongly urge that you ask your GP to order ANA and dsDNA bloodwork as a screening for this disease.
Both my brother, mom, and a good friend of mine have had Lyme disease, so I'm not inclined to think the flare-ups you describe are a result of Lyme, which is usually progressive and worsens over time. They did exhibit Bell's Palsy, extreme fatigue, joint pain, and cognitive loss, which all resolved when they were treated with antibiotics. If your GP can't find another reason for your neurological episodes and additional symptoms, you could request that you be given a (minimum) two-week course of Doxycycline in an attempt to treat it since advanced Lyme disease becomes more difficult to detect via bloodwork than early-stage.
Keep me posted. I'm interested to hear what's going on with you since I've had similar "flare-ups", but mine have been diagnosed as possible TIAs, though the doctors aren't sure why (I've got a pineal cyst, mild hypothyroidism, and migraines, but nothing that appears to fully explain my neurological problems to date).
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