Discussions By Condition: Autoimmune Disease

Hopelessly hoping!

Posted In: Autoimmune Disease 1 Replies
  • Posted By: Anonymous
  • February 6, 2010
  • 02:11 AM

Hello! I am a 30 yr old female with no other health issues, no children.
I just wanted to share my story... I have read some and feel a little better that I am not alone with this. At the beginning of October 2009 I came down with the flu, I dont normally go to the doctors for these sorts of things but with the big H1N1 scare my work asked me to go. While I was getting checked out my doctor noticed that I had a goiter on the right side of my neck. I had noticed this previously but it didnt hurt so I didnt think it was anything to worry about, passed it off as a swollen muscle or something silly. Since then I have been through countless tests, I have had 4 blood panels done... all my levels come back normal. The last test I had done showed I was a little HYPER but he said he didnt think it was anything to worry about and told me to wait it out that the swelling will go down on its own. December 23 I woke up and the goiter was all the way across my neck and the left side was starting to swell. So I went back, had another ultrasound and more blood work done... blood work came back normal again but I had 2 nodules that had formed. One is 3.5 cm and the other is 4cm.

My doctor had then booked me in for a nuclear thyroid scan or uptake I think they call it (I still have not been explained in detail what this is.) This was booked for January, I then received a call saying they had spoken to the endo I was referred to see in March of this year and she said this test was not necessary and then I was referred to a surgeon. I was the surgeon January 19th who has again booked me for this nuclear scan. This does not sound like something I should be doing! It worries me that they tell me this is harmless and in the same breath I cannot have prolonged contact with anyone for 48 hrs? That does not sound like something that is harmless. And I am worried about taking something that is radioactive as I have not had any children yet but would like to in the future.

Needless to say I am at my wits end with doctors appointments and science experiments... I feel like a lab rat! And the fact that everytime I try to explain to them how I am feeling I get smirks and "Oh its not really that bad" "Oh I think you are over reacting" Or my very favourite "I dont think that symptom has anything to do with this, you must be getting a virus" Its interesting how if it is a virus the 2 rounds of anti-biotics have not done anything. I have been doing a lot of research on what may be the problem and I think I am in the right place here. These are the symptoms I have been having...
Severe headaches, extreme fatigue... sleep for 10-12 hrs and not feel like I have slept at all. Depression, mood swings, very irritable, zero patience, no sexual desire at all, lack of appetite at times, weight loss (have loss 17 lbs since December) my eyes are very sensitive to light, bad stomach pains once I eat, sudden bouts of nausea that last 30 mins at the most. Constipation, SEVERE pain in my knees (I went for an MRI in June 2009 and was told I had tendonitis... could have been mis-diagnosed since around that time at least) I have pain everywhere but my face! I get really bad cramps in my feet and calves. My hands feel like I have carpal tunnel at times. Memory loss, confusion, cannot put sentences together, I drove past the house I have lived in for 4 years last night! Pulled over and cried for almost an hour.
Of course I have some good days, and then I go crazy because Im excited I feel good, but then it takes 2-3 days to rest up from it. Is there any hope at all that I will feel better? Im to the point where I dont see an end to the pain and I would love nothing more then to get back to my old self.

I find the worst part of it is the lack of understanding, my biggest pet peeve these days is to hear the words... "Oh its not that bad, keep your chin up" I would love for some to spend 1 day in my shoes, I dont think I would ever hear those words again.

Is there any hope?

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