new here -here's my story.

[Guest guest]

Hello, my name is and I'm a 29 y.o. and I am searching for answers. I

want to tell you my story in hopes someone out there can relate and help me

understand what is going on.

Growing up I was pretty healthy except for really bad allergies and infections

from that. I had tonsils out when I was only five. I tested for allergies and

I'm allergic to all pollens and soy (soy in foods makes me wheeze and cough so

for a couple years used Advair inhaler). I played Basketball growing up and was

always getting hurt and had really bad growing pains. Many weird and unexplained

symptoms started in my early 20's. I was cold all of the time, cold feet, memory

and thinking issues, neuropathy in legs, Big L toe weakness, foot and low back

pain. I saw nuerologist and had MRI of Brain because my Primary doctor thought

maybe I had something like Multiple Sclerosis or something with sudden onset of

toe weakness. Tests all normal and symptoms just went away on its own.

In late 2006 I got really sick and went to ER and they found nothing wrong

except for high TSH of 10.1 and I was dehydrated some. I had my first heart

palpitations, heart rate over 100, short of breath, dizzy, light headed, and bad

nausea. I went to my primary care doctor and he said if I didn't show symptoms

of extreme fatigue etc. that I didn't need to be on medicine for thyroid. I

continued to feel really sick and they finally found out I needed gallbladder

out. I had surgery in April 2007. Everything went well and was feeling really

good after that. The only exception is that I caught myself saying I'm tired a

lot, I continued to be cold all of the time, a few tremors in left hand that

lasted a few seconds, and I was overweight and had higher blood pressure that

was about 130's/high 80's-90's, and also around this time had several urinary

tract infections.

Everything major started in September of 2008. I had a bad fall on my knee while

skating. X-rays and MRI normal -most likely a bone bruise. It took longer to

heal than expected and everything seem to just snowball from there. I was

extremely tired and weak, I started having heart palpitations again, and doctor

thought I had a virus. My whole neck swelled and it was hard to turn my neck. He

tested several things and also thyroid again since a week later I wasn't better.

My tests were normal except TSH was 6.1. So I started Levothyroxine 50mcg. I

started to feel pretty good and could feel myself thinking faster and having

some less memory issues.

Then a couple of weeks later in October 2008, my health really took a nosedive.

I started having really strong heart palpitations, short of breath, extreme

chest, jaw, and head pressure,extreme fatigue and weakness to the point of

feeling like passing out, really bad nausea and dizziness, pupils would dialate

and constrict rapidly where it would make it bothersome to focus on things, I

was very sensitive to loud noises, felt as if I could feel my blood gushing in

and out of my heart, had a bad metallic taste in my mouth, left side of neck

would swell and hurt to the touch, hands would swell and get red and then turn

pale white, I could see me veins more easily through skin, I got bruises more

easily, getting sick very often. This made it very difficult to go to work and

was out all of September, most of October and some of November. Doctor thought

maybe reaction to thyroid meds so he took me off of it for awhile -I got even

worse so we restarted it.

I figured out on my own that it had something to do with salt because when I ate

foods with more salt I would have worse symptoms and also even tasted salt on my

lips after an hour after eating, my whole face felt like it was shriveled up, my

hands and abdomen would swell, I would gain more than 5 pounds in one day, I

felt the need to drink a ton of water after a meal and urinate a lot to balance

myself again. I started on my own avoiding salty foods and staying on a low

sodium diet. I started to feel better. But once in a while I would try the foods

higher in salt again because I felt better. But everytime I did this my symptoms

got tremendously worse. One time I did this and also started wheezing and

coughing -I thought I ate something with soy in it so I took my advair inhaler I

use sometimes. That made my symptoms skyrocket! Some symptoms like heart

palpitations and fatugue never went away, but with more salt they got worse and

all of the above symptoms came on. But on the low sodium diet I felt I could

manage and go to work. I found out that my limit is about 325 mcg of sodium per

meal. Anything above this then I start getting sick. I try to stay way under

this level though.

They also did a CT scan of lungs thinking it could be a Pulmonary embolism after

the fall on my knee. Of course it was normal but the iodine they used made me

sooooooo sick. My left side of my neck swelled and hurt so bad. My heart

palpitations were horrible and I had the worse dizziness and nausea ever. I

could not stand up on my own except few second without feeling like going to

faint. I went to ER and they couldn't find anything wrong except my TSH was

again high -over 9.1. They thought it was also anxiety so gave me RX for Xanax,

which actually helps sometimes when symptoms are extreme because it helps calm

me down some. I feel like my body can not handle as much stress as it used to.

I started reserching on my own and wanted them to test my cortisol levels. They

did and Cortisol was high at 26.1 and ACTH high at 49. My doctor wanted me to do

a Pituitary MRI for possible cushings but didn't have insurance and my symptoms

were somewhat tolerable with low salt diet.

They have tested my heart extensively with 4 EKG's, echo, 24 hour holter monitor

and all normal. Chest X-ray normal. All normal bloodwork normal. The only tests

that were abnormal so far have been: the one time high Cortisol and ACTH as

stated above, TSH high as stated earlier, aldosterone elevated at 24 with renin

at only 1 on a low salt diet, and just recently we did a complete thyroid panal

because of a low TSH level of under 1. I showed a Thyroglobulin Tumor marker

high at 45 and the thyroglobulin antibody high at 13. My latest TSH was 3.14, T4

was 10.06, T4 free was 1.44. I am still very cold all of the time

(today I wore two pairs of pants, three shirts and a jacket, two pairs of socks

and I live in Texas. Sometimes feel like my thyroid medicine is not working

eventhough they moved me up to 75mcg.

I think I may also have Conn's due to the symptoms with salt and heart symptoms,

aldosterone and renin levels, left low back tenderness which is worse when

pushing on it, some muscle cramps and weakness that get better with high

potassium foods.

Now that I have insurance I have my first endocrinologist appointment with Dr.

Lado in Lubbock Texas on March 16th. I want to be very informed and ready for

this visit. Thank you for taking the time to read my story.