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Old 04-17-2010, 06:12 AM   #1
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jessmariebfly HB User
Addison's or hashimoto's or hypothyrodism or lupus or what?

Ok I was diagnosed with depression at 6 years old cause I sorta slept a lot ( and for a couple other non-medical related things). Then I got my period and developed at 8 years old.Endocrinologist said I was probably ok and asked if I wanted a shot to slow my growth and my mom said no.So I was the tallest person in my class till 6th grade.Now I'm only 5ft. Was put on some perscription pain meds for a few years for my periods.Vomited every single time I got my periods with very severe cramps.Passed out 2 times from the cramps. Started really noticing the severe fatige when I was about 10.I slept a lot,was sleepy a lot when I shouldn't have been. Everyone thought I had depression so I continued to see counselors/shrinks. Around that same age I started getting what I thought was the flu,but I would vomit and have diahreah so bad that I ended up in the hospital a few times.Happened 1-3 times every year since then. The sleepyness and fatigue continued to get worse.I am always cold too.Even in the summer.That has been going on for as long as I can remember.Sleeping up to 13 hours a day and still being tired.Yawning constantly and just wanted to sleep all the time.Started getting nautious a lot,especially in the mornings.Doctor said it was just my nerves without doing any tests.I continued to just go with what the doctors were saying,although I really only saw a few before I was 21.I always knew there was something wrong with me,but my main concetration was on my horrible period cramps so I finally got on birth control when I was 18 and that helped 90%. Then when I was about 22 I started passing out and having seizer-like convulsions. I would pass out without warning and convulse 5-10 seconds and wake up and it would be like nothing ever happened.Usually only felt a little sleepy for about 3 minutes. Went to the doc and she said it was probably just my diet,once again without doing any tests. I passed out one time when I was choking on a piece of pizza and other time while giving blood. Ended up being referred to an neurologist and he had me do an EEG sleep test and get a cat scan.When they put the contrast dye in me I passed out and nurse said I only convulsed a little.I remember feeling a little nautious and tired after that one.I ended up going a year with no passing out and feeling pretty good besides the fatigue.Continued to work full time and take my birth control and a mult-vitamin one-a-day energy to help me get through my work shift,although I did have a lot more energy then I do now.I had some blood work done in January of 2007 and everything came back normal.I can't remember everything they checked,but it was about 10 pretty normal things including thyroid,cholesterol,hpv and aids. Everything was normal.2 months later I became prego.Pregnancy went pretty good besides I gained too much weight and my back hurt sooo bad!! I couldnt sleep much cause every position made my back hurt. I found out from one of my blood works that I carry the gene for systic fibrosis,but I don't think that really hurts me any. Labor and delivery were super easy,just my blood pressure dropped kinda low so they had to wait till it went back up before they could give me my epidural.Everything was fine,just blacked out after I came back out of the bathroom (after getting up the 1st time after delivery).Then 2 weeks after I had my daughter,I was lying in bed feeling ok and the next thing I know I got EXTREMLY cold and could not stop shivering and shaking and was shaking bad.Felt a little nautious,thought I was getting the flu again but I didn't have vomiting or diareah.Just kept shaking and was FREEZING.So I went to the hospital after 2 hours of that straight and they just gave me and IV bag and did an x-ray on my lungs,which I'm not sure why cause I wasn't coughing.They did end up finding a tiny spot but I had another x-ray done a few months later and the did it from 2 angles and could only see the spot in 1 so they pretty much just brushed it off.No lung problems that I know of. Ended up having the same "freezing" symptoms about 5 weeks later but I just stayed in bed under the covers and it went away after about half a day,but I felt horrible for about 3 days later.Pretty much right after that was when my fatigue got very very bad.I yawn all day at work and if I lay down when I get home then I am asleep in 5 minutes and I become a zombi.I can wake up easily and be ok,but sometimes I feel like I cannot pysicially get up.Soooooo tired!! Like I'm drained. Week after week after week it gets worse.Some morinings I can't get up with my daughter till like an hour later cause I need that hour to wake up and force myself to get up.And in the winter it is soo much worse cause its sooo cold and when its 30 degrees to me it feel like its 5 degrees.Then a few months later I started getting really lightheaded and dizzy.Always ligheaded,but the dizzyness would come and go.Gets bad sometimes when I lay down.Like the room is spinning.When I kneel then get back up or bend over and stand back up straight I am almost to blackout stage.Sometimes gets tunnel vision,but it will go away. That went on for a year and a half before I had another episode.I was at work and I hit my hand on a shelf and it hurt kinda bad but I felt ok.I walked over to see what a customer was doing then all of a sudden got really lightheaded and hot and tunnel vision.I tried to stop it by breathing and calming myself down but I knew it was going to happen so I sat down.When I woke up I had a fat lip and was missing my front left tooth.$800 out of pocket later...besides my lip hurting I felt just a little tired and nautious,but I was back to work within 15 minutes with my mouth shut so no one could see my toothless smile.Ran to the dentist after work and got my crown.So the lighheadedness would get worse and I would keep feeling like I might pass out(that happeneds at least twice a day) and then sometimes I feel like 98% that its gonna happen,but I put my head down and breath and sit and it mostly goes away.Fatigue worsens as the months go and so does the lightheadedness.Eye sight is getting bad too.Anything more then 3 feet away is blurry.Then in october my back started hurting so bad one day that I was almost paralized.I couldn't bend or take a deep breath.Had x-rays done and they were normal.Back has hurt since I had my daughter,but not like that.That was sooo horrible I knew something was wrong,but x-ray was normal.Always have had leg,knee and foot pain.Was dianosed with oshgood slaters in my knees when I was like 9 (then had water on my knees when I was like 11).I am overweight and have flat feet so I figure thats why they hurt.Started to get tingling in my feet when I sit that lasts till I get up and walk around.Goes away withing 2-3 minutes but happens about 75% of the time that I sit for more then a half hour.Then in November I went to see another neurologist. He had a bunch of blood work for me to do and an MRI that came back normal.Most of my blood work came back normal except my ANA autoimmune disease test came back positive/high and my sodium was low.Just told me to come back a few months later to see how I feel and have the ANA test re-done.I ended up passing out really bad in December.I was standing up and didn't feel too well then I knew I was going to pass out so I ran over and sat in a chair.Could not wake up! Not sure how long I was out but I kept trying to open my eyes and they would not open.Finally when I woke up I felt HORRIBLE!!!! Soooo nautious and dizzy and lighheaded.I had to lay down for a half hour even before I could walk.Then I still felt horrible for a week.Was told I seized kinda badly.I haven't seen my neurologist since then,but last time I saw him in november he sent me to a heart doc that did and ekg and it was fine.Heart doc didn't get any blood work results or anything from my neurologist,just went on my word about my sodium being low.He said he thinks I just have convulsive syncope or vaso-vagal syncope,but that was before the autoimmune disease test came back positive. So about a month ago he put me on florinef to take with a potassium vitamin.Had one good day about 5 days after I started the florinef.Was drinking smart water and eating crackers all day and felt almost normal for the first time in years! Didn't really feel any different 3 weeks later so he is having me take a sodium tablets now.Still don't feel any different, just one ok day last week.Then yesterday the 4-15 I got pretty ligheaded a few times but was ok.Today,4-16 I got hot and extremly lightheaded with tunnel vision twice.Really thought it was going to happen.Ate some pretzels and sat down and drank some vitamin water and I started to feel a little better,was ok for about a half hour,then had to repeat that about 4 more times every half hour before I got to go home.Once I got home I felt nautious for a few hours,but was ok after.I do eat a good breakfast and dinner,but don't eat a full meal at lunch.I will usually eat a combination of 1 or 2 of a yogert,crackers,crackers with cheese,fiber one bar.Been eating some pretzels lately since they have a lot of sodium.Doc said eat more sodium,but I can't add it to my food cause I don't like the taste of too much salt.
Family history-mom has lupus.Whey they didn't test me for lupus or autoimmune disease years ago is beyond me!!!!!!! Even my neurologist was shocked!!!!! Mom had depression and arthrits and a few other things. Trembling with shakes and jerks if she doesn't take her medicine.Real seizers. Had an anurism when I was 3
Dad is ok besides he has passed out a few times for no reason too and has had a seizer once.He has been passing out since he was a kid.Think it has only happend about 5 times.He is always always tired too.Worse then me most of the time.
SOOOO sorry about the super long post.Want to get as much info in as possible so I can get a true honist opinion.
Addison's disease,hashimoto disease,hypothyrodism or Lupus??????????????????

Some other symptoms besides the severe servere fatigue and always being cold..
passing out with convulsions
low sodium
trembling sometimes with shakeyness sometimes]
heart rases sometimes in the morning
SEVERE lightheadedness 95% of the time-wayyyy worse when I'm at work on my feet all the time
Dizzyness sometimes, about 50% of the time when I lay down
Just started getting diahreah almost every morning for about 4 months now.Usually not too bad
nautious 75% off the time,especialy in the mornings.Have vomited for no obvious reason a few times a year for as long as I can remember
Bad back pain sometimes
Feet and legs hurt ALL The Time
Knees hurt sometimes
sometimes told I look pain
nails are very brittle and can bend, hair breaks off easily in the back and I pull out chunks when I brush my hair
depressed a lot
always thought I weighed more then I should with a slight bulgy belly ( looks like I'm 4 months prego)

Ok thanks in advance!!!!!! I knew there was something wrong with me my entire life,just really trying to finally find out.Thanks!

 
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Old 04-20-2010, 05:38 AM   #2
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JenHelm68 HB User
Re: Addison's or hashimoto's or hypothyrodism or lupus or what?

My goodness Jess! What a cornucopia of symptoms! You are correct in asking about a thyroid condition because SO many of your symptoms attest to that. I have 3 other friends with thyroid issues just as I have, but our symptoms are all different. When your thyroid is off, it can affect everything. Your thyroid works with many different parts in your body, so when 1 is off another overcompensates. I have been dealing with mine for 2 years. I will get my estrogen balances, then my thyroid is unbalanced. I get my thyroid balanced, then my sugar is off. My heart races, but my mind is good. Some days you feel like a hypochondriac but you KNOW something is wrong.

I have 2 suggestions for you. I am not a doctor but a well educated patient who's doctor is all about making people well without giving them side effects from drugs. First, if you can, have some blood work redone. What some medical docs feel as "normal" results are still either too low or too high. Second, if you are willing, find another doctor who treats naturally. They are much more inclined to listen to your symptoms and treat you with the respect you deserve. You have suffered long enough and you have a daughter who needs you healthy. Get to the bottom of these issues so you can live your life to the fullest

(PS I speak from experience. The vagus nerve is a rascal! When out of whack, it does cause light headedness, dizziness, low blood pressure, rapid heartbeat, passing out, & nausea. I have had my neck adjusted by my chiropractor when my vagus nerve was pinched on a few occasions. It is a great relief when it is released)

 
Old 04-21-2010, 03:07 AM   #3
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jessmariebfly HB User
Re: Addison's or hashimoto's or hypothyrodism or lupus or what?

I don't know anything about vagus nerve,will have to look into that. Endo said the blood work I had back in november showed my thyroid as being ok.He said even though I do have most symptoms of addison's its probably not addison's since i don't lose weight easily,ever really lol, and I don't have darkening of the skin. I've already had 2 epilepsy tests and mri and cat scan that were all normal.Plus when I pass out I don't wet myself or anything and I guess with a real seizer you do.I wake up almost completly fine like it never happened. Was diagnosed with the convulsive syncope back when I was 22 and thats what my neurologist thought before my ANA test was positive and my heart and endo sorta suspect it might just be that,but it didn't start till I was 21.I don't know if that just starts out of the blue.I've always been super tired and have no energy.I have a bunch of other things going on that I don't know if they are related to whatever I have or just normal weird stuff bodies do.

 
Old 04-21-2010, 08:13 AM   #4
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JenHelm68 HB User
Re: Addison's or hashimoto's or hypothyrodism or lupus or what?

Your doctor said your blood work in November was "normal", but what was it? What is TRULY normal for a person isn't what most doctors are taught. When I had my thyroid checked, my familly doc said my TSH was "normal" at 4, when actually it is a very high normal. He said my hemoglobin was "normal" when it was 10 and normal is truly 12. My brothers doctor told him his TSH was "within normal range" at 1.2 when truly that was low. Our doctors are medically educated but don't look at symptoms when they have blood work. I really suggest a second opinion and/or new blood work. It isn't "normal" to faint and your doctor should be on top of it. Be proactive Jess!

 
Old 04-22-2010, 12:23 PM   #5
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aloon905 HB User
Re: Addison's or hashimoto's or hypothyrodism or lupus or what?

You Might want to check out "Still's disease". Although your symptoms are close to mine, Still's is very hard to detect and diagnose. the fact your ANA is hi you might want to consider seeing a Rumatologist. good luck.. Alan....

 
Old 04-23-2010, 03:58 PM   #6
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jessmariebfly HB User
Re: Addison's or hashimoto's or hypothyrodism or lupus or what?

Thanks! I will look up Still's disease. Never heard of it.Well I am going tuesday to have a "stim" test. Well I don't really have the greatest insurance to be hopping from doc to doc.I trust their opinions since they know more about the test results then I do. I know doc's make mistakes and such,but I can't argue with them.I understand the situation they are in when my results don't really show anything.They have given me couple ideas,but I shoot them down cause my symptoms don't all match/add up.I don't really know what else to do.Have the ANA test re-taken next month and if it is high again them we can check for specific autoimmune diseases,I guess. Wonder if I have lupus like my mom

 
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