Dear Thyroid Community, What Do YOU Think Is Wrong With Me? Did I Mention, I’m Just A College Student?!
Hi Everyone – Katie here. I don’t normally introduce letters, but this isn’t a letter. This is one of our recent community members with a lot going on. She’s young. She’s in college and her concerns and issues have concerns and issues. After speaking with Daniella, she graciously agreed to allow me to post this email. I wanted to put this out to the community, so everyone can share their experiences with Daniella. After all, you are pretty awesome and fiercely intelligent. So… What say you?
My name is Daniella, I was in contact with you on March 23rd on Twitter regarding my thyroid concerns. Thank you for agreeing to read my story.
In February 2003 I was diagnosed with a severe coarctation of the aortic valve. The doctors told me I would be going in for surgery likely the following spring as I was headed to college in September 2003. They were going to wait until I finished my first year as the back log of patients wouldn’t allow for me to get in before I started school. It was explained to me that it was a miracle that the doctors we able to diagnose such a condition as its usually not diagnosed until the condition kills its victims, which in my case would have been by the age of 45 or during child birth, should I have chosen to have children. In November 2003 I was contacted by a nurse from the hospital performing the surgery indicting they had an opening on December 19th for the surgery and that because of the severity, they would prefer not to wait until spring and she understood I had a month off school for winter break. My 19 year old self tried everything to put this off as I was terrified, but I soon found out that placing that call to me was the last step and that everything had already been set up and was in full motion. I soon found myself in pre op and before I knew it December 19th 2003 had arrived.
As I was wheeled into the surgery I noticed that all the nurses had these bizarre bright pink and green colored outfits on. I watched them suit up in the hallway. Judging by the way they were slinging these things around, they were heavy. I asked a nurse what it was that they were wearing and she told me it was magnets to protect them from the radiation. They had a small piece covering their necks a big one that they pulled on over their heads that covered their backs and fronts. From what I can remember they had something on their heads as well. As I was lying on the surgery table completely nude, a nurse came over and said this will be like a bikini bottom and covered a small area with a rolled up towel. She then said “lift up your back side” and she slid something under me and told me it was a magnet to protect my ovaries from radiation. I never gave any of this a second thought until the day I realized it may be coming back to haunt me. I returned to the same sort of procedure in the same type of room again in November 2004.
Now to fast forward to the summer of 2004 I was beginning to notice that I was getting anxiety and I was no longer able to handle family drama or work stress from my summer job. I was getting an instinct in me to run for the hills. I convinced myself it was because I had been away and had become accustom to only taking care of myself and had been living a carefree college life. I began to count down the days until my college return.
As August ended I packed up my belongings and hit the road back to college. I began to notice that I was feeling kind of “off” I was experiencing dizziness and positional hypotension. There was times when I was sweating or freezing I never really felt comfortable. I was always tired my friends would laugh because I never lasted through a movie no matter what time of the day we were watching I was out like a light. I was even feeling a little down for no apparent reason. By the middle of September this got worse I remember feeling like I was falling backwards and being dizzy a lot when I was walking down the halls at school and I couldn’t focus I had to read the same thing 3 or 4 times to understand it. I began getting big bruises all over my legs and arms I remember leaving my room and going to visit a friend I sat on the edge of his bed and had my legs crossed and my leg was just touching his desk that was beside his bed. That night when I went to bed I had a bruise as big as my fist on my leg the exact spot that was against his desk. This went on for awhile I found it very alarming. My period had also become unbearable it went from 5 or 6 days to 8 or 9 of excruciating pain and heavy flooding flow, there were days where I couldn’t even get out of bed or get dressed I laid in a ball in my bath robe.
It was the weekend of November 4th, 2004 when all hell broke loose. I had what seemed like a severe anxiety attack I couldn’t breathe my head and heart were racing and nothing seemed real. I went to the emergency room and they ran some tests I never saw any of them but was told they were all normal. A social worker came in to talk to me about the stress of school and when to know when to walk away from a bad situation and take a break and so forth. This was all surreal I had no idea what was happening to me but I knew I hadn’t been feeling well for awhile and this had nothing to do with school or stress. Before coming to school I was working at a busy doctors office as a manager I got this job in highschool filing and so forth when I decided to take time off school after high school I was hired full time that was stress not living carefree in a dorm with a thousand kids my age having the time of my life. I tried to tell these docs and social workers they had it wrong and they wouldn’t listen they advised me to get in touch with my family doctor and discuss going on anti anxiety meds. After a few trips to the emergency room, I got in touch with my family doctor back home. He ordered a lot of tests.
I remember doing a lot of blood work and abdominal ultrasound and 24 hour urine test. He said he was testing me for thyroid and other hormonal problems as well as a disease called Cushing’s syndrome and looking for a tumor on my adrenal gland. After calling him during many of these episodes of racing heart and head, shortness of breath and at times even inability to walk properly (I was staggering) he began to question me about what I had recently eaten and drank and we soon found out I was having severe hypoglycemic attacks. He told me to drink orange juice while he waited on the phone and after about ten mins it stopped but I soon noticed if I didn’t eat it would happen again and hour later. I then went in for more tests he was checking for an insulin producing tumor. All of these tests came back normal. The doc suggested I go on anti anxiety meds (paxil) and adivan for breakthrough attacks. Feeling lost and like I had nowhere else to turn I agreed. I remember for quite awhile I was walking around in a haze or fog everything seemed surreal I didn’t know who I was anymore. One time I was sitting in class and looked around and nothing seemed real it was like I was in a huge fog I had to excuse myself and stand outside for awhile. I was in the middle of my worst nightmare and couldn’t wake up.
When second year finished I was suppose to stay in Toronto with my college friends but I was so messed up I went home to try and get my life back. I started frequenting my family doctor he sent me to an endocrinologist who was really old and was half laying down he didn’t like my direct questions and grabbed me my the back of the shirt and kicked me out and sent a note back to my family doctor saying I had psychological problems. I went to see another endocrinologist who ran a few hormone tests and another cushings screening and told me he was releasing me with a clean bill of health. I became the laughing stock of my doctors office the last time I seen this particular family doctor he laughed at me and one of his staff members told me they were going to get me a psych. Consult.
In January of 2007 I got a new family doctor. I had been having a lot of pain in the front lower right part of my neck and someone pointed out to me a swelling in that part of my neck. The new family doctor told me would run as many tests as he needed to in order to find out what was going on with me. He started with some blood work and an ultrasound of my thyroid. For the first time in a long time I had hope that I would finally get some answers. You know you’re in a bad place when you’re hoping for a diagnosis instead of good health. Two days after the tests were run I got a call the nurse told me I had to come in for my results and that they found something. I was nervous going in but was thinking at the same time that my prayers were about to be answered. When I got to the appointment the doctor told me they found two 2mm cysts on my thyroid, my cholesterol was high and my iron low. He said there was no course for further action and that he would be sending me to the local dietician for some lifestyle changes to improve the cholesterol and weight problem and to take a supplement for the iron. He said that a huge amount of the population had thyroid cysts and it was completely normal. When I left that office I felt like my world was crashing down around me I was no further ahead than before. I started frequenting this doctor now with my continued symptoms and pain and discomfort in my neck and he had his staff tell me that my mind and body had lost all connection and the symptoms mean nothing. They asked me to go back on anti anxiety meds and to go to cognitive behavioral retraining where I would learn to live with not feeling well because it was never going to change or get better. They also suggested I look into alternative healing like praying or reiki.
I began doing a lot of research on the internet and became more and more convinced that I had a thyroid problem. I went back and looked at all my old tests and watched my tsh rise with each new test from 1.99 –> 2.22 –> 2.5 –> 2.7 –> 3.9. I have had it tested 3 times in the past year and it has consistently been 3.9. I had a walk in clinic refer me to see a new endocrinologist last year and she told me that a tsh of 3.9 cannot be treated it is only treated when it reaches 10. She agreed that mine has a history of rising but also said that she has many patients who don’t follow up with theirs and stop taking medication and end up with a tsh of 100 and not only don’t have any symptoms except being a little tired but have only gained 10 pounds which is all water and drops off once she gets their TSH down again.
I have recently lost my job and my family has given up on me. They want me to check into a psych ward and seek help. I have gained a lot of weight since this all began and have to eat little bits frequently or I have hypoglycemic attacks. I find that my body is not digesting food properly and I am no longer able to eat anything sweet; if I were to try to eat candy, sugar or even a sugary drink I have a crippling low sugar attacks and my sugar spikes up and crashes. There is also a lot of fruits I can’t eat any longer including grapes and melons. My family is convinced I am having some sort of post traumatic stress from the surgery and am now just fat lazy not to mention crazy.
Here is a list of symptoms I am having:
-bottom of my feet ache
-developed yeast allergy
-developed an intolerance to gluten
-blood sugar problems
-hair falling out
-high blood pressure
-eyes have a starring look
-discomfort in neck (sometimes all the way to my ears or even the back of my neck gets sore)
-inflamed neck in the morning (yawning brings awful pain feels like my throat is being stretched)
-dry flaky itchy skin
-itchy inner ears
-loss of interest in daily activities
-skin cold all the time even if I don’t feel cold
-acne (face neck chest arms back)
-cracks in corners of mouth (gets crusty to) been there since sometime in October
– recurrent right eye infection (3 times in last 6 months)
-heavy painful periods
-blurred vision at times (also see black spots sometimes)
-trouble falling asleep and staying asleep
– feel withdrawn and prefer to be alone
-difficulty climbing stairs
-swollen hands feet and legs
-periods of drowsiness during the day
-puffy face (some days worse than others)
-prickly feeling at front and back of neck (maybe from nerves)
– obsessive compulsive with having food ready to eat (because of the allergies there really isn’t anything quick I can eat so I have cooked meals ready to go at all times. I find I’m snacking when I don’t need to or shouldn’t be to avoid a hypoglycemic attack)
– I wake up with pain in my throat most days early in the morning 2 ..3 sometimes 4 a.m.
There is probably a million more things I should be mentioning that I’m forgetting. Anyways back to my question could the radiation that I was subjected to on two occasions have damaged my thyroid. This did all seem to happen after that. And is it also true that one could be suffering from a thyroid problem for years before it shows up on the tests and that is manifests itself slowly?
Am I holding onto nothing here? I truly hope I haven’t lost 4 years of my youth and become unrecognizable for nothing!
Its funny one of the doctors actually told me “you have already been given a gift and been diagnosed with the heart condition that is virtually undetectable. There can’t be anything else wrong with you” …….. I’ve been through a lot and it all makes me wonder.
Feel free to ask anything personal or not and thanks again for reading this loooonnngggg email 🙂
Tags: acne, being cold, bloating and gas, blood sugar problems, bottom of my feet ache, change in eyes, constipation, developed yeast allergy, dry flaky itchy skin, fatigue, gagging, hair falling out, head sweating, high blood pressure, intolerance to gluten, loss of interest in daily activities, muscle aches, neck discomfort, thyroid disorder symptoms, weight gain