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I'm at my wit's end--your thoughts would be greatly appreciated!

Apr 14, 2009 08:06PM - 1 comments

Here's where I stand at this point: I'm seeing a litany of specialists for a litany of symptoms that have grown progressively worse over the past year. I suffered from severe fatigue for several years prior to the onset of many of the symptoms I have experienced for a year now, but aside from this, my only other symptoms (looking back) would have been weight gain, puffy eyelids, and headaches.

In the past year I've seen or am seeing a neurologist, rheumatologist, neuro-opthamalogist, cardiologist, gynecologist, endocrinologist, allergist, and pulmonary specialist. I've been diagnosed with idiopathic hypersomnolence (aka I'm really tired, but they don't know the cause), fairly severe allergies to dust mites and grass pollen, common migraines, Hashimoto's with sub-clinical hypothyroidism (though my Endo seemed to retract her Hashimoto's diagnosis today...), a pineal cyst, polycystic ovarian syndrome (PCOS), and marked sinus bradycardia.

Here's what worries me. My TSH is now in a normal range--1.70--for the first time in a year, but I feel as though NOTHING has changed, and my Endo doesn't think any thyroid problem is causing my severe symptoms. Currently, the symptoms that worry me the most is my decreased red blood cell count--a trend I've noted throughout all of my CBCs over the past year, my increasing white blood cell count (it's doubled in the past year alone), an increase albumin/globulin ratio, occasionally elevated liver enzymes, easy bruising, even with my platelet count being normal (but slightly decreasing), petichae popping up in random places on my body, itching/increased skin sensitivity (which I attributed to my elevated liver enzymes, but these enzymes are no longer elevated!), worsening swollen and painful joints, and especially this constant, unexplainable fatigue. My EBV levels are fine (though I had copies of EBV DNA in my blood, but they were considered in a "normal" range--is it even normal to have any EBV DNA in the blood???).

I'm trying to keep this short. I just wonder what I should do now. My GP doesn't want to see me until late July (argh!), the endocrinologist said that the area in my throat where I said I felt the "lump" in my throat was above my thyroid, and my neurologist doesn't think the pineal cyst is a problem. He just treats me for migraines and I've had three transient ischemic attacks in the past few months from these. I also feel very anemic--when I stand up, my vision will sometimes black out for a few seconds. I get really light-headed and dizzy easily, and I'm constantly in a brain-fog.

I'm going to continue on my thyroid medication, but I don't think it's going to help me because I haven't felt any change whatsoever, and I've been taking it for 7 weeks. My TSH has responded to it, but my symptoms aren't! I wonder if my thyroid is just a casualty of an underlying disease, and not the cause of it all.

Any thoughts would be greatly appreciated. Should I see a hematologist, next? Oncologist? Another endocrinologist (this one was very reputable)? As of now, I'm getting worked up for partial seizures by my neurologist, patent foramen ovale by my cardiologist, and PCOS by the reproductive endocrinologist I will be seeing in a few weeks.

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by Me967, Apr 14, 2009 10:03PM
I feel for you but, I'm sorry I don't know what the answer is.  There for a while I was in you same shoes.  Tired all the time, light headed, ice pick headaches (all the time) for months, my body hurt with pains so bad I thought I was going to go insane, blurry vision, if I blow my nose air comes out on my eye now, face and eye swells up, cyst in my throat, breast, underarms, uterus, the boating pressure is so bad and pains due to cyst, ovaries or IBS, and lets not forget the stupid boils.  Ouch.  
BP and HR issues high and low, violent coughing leaving me breathless and sick or hitting the floor (maybe part of COPD),  EF dropped 20 pt's. last year,  along with type ll diabetes and a very possible hiatal hernia.  
I didn't know which ologist to even turn to.  Money was/is short and my husband needed help too, so I just stopped going to anyone.  Last time I talked to my Doctor she wanted a CT of my stomach, a colonoscopy, a laparoscopy for a growth/cyst and endometrium stuff, etc.  I never went back though Finally I gave up even asking here.  Sorry for going on, on a rant.  Actually I'm still dealing with all of this.  Urgg

Point is I know how frustrating it is to feel like your turning in every which direction and not getting no where.  :-(  I really hope you get your answers.  I'm sorry I don't now what to say; but, I will and have been praying for you all along.  Best of wishes my friend.  I really hope someone can come along and answer this mystery for you.  I honestly think it is something other than thyroid.  I'm sorry I don't know what is actually is though.

Sending cyber HUGS your way and an extra prayer for you to get your answers. ;~)

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