Three Weeks Tomorrow I had Surgery and Need Another Procedure Soon

Woke up today with a headache. Haven't had one in over a week so it was unusual and a little scary. Took some Tylenol and feel better.

I had a CT scan of my neck on Tuesday. They gave me a DVD so I was able to look at it at home and go online and evaluate it myself. It shows a compression of my trachea by the goiter. Today the doctors office called with the results and that's what they said. It is a substernal multi-nodule goiter, compressing the trachea and esophagus. This scares me more than the tumor because although slow growing it could shift and cut off my airway altogether. This is the case I read on-line where the guy died and they had no idea what was wrong with him. The goiter is not recognizable on a chest x-ray. I had two x-rays in the last 6 months and no one saw it. It is visible on the ct though. You can see the trachea which is a dark circle then in changes to a flat oval. It should remain round all the way down. So this is why I wake up with nightmares of someone suffocating me. Not now though cause I sleep on my right side and it relieves the pressure.

So this means another surgery hopefully in the next few weeks.

I am going to see the quack tomorrow. I want my blood pressure checked. I quit taking all my meds except zoloft.

Right now I am light headed and feel my blood sugar is low and possibly my BP. Tara I eat and eat. I have gained about eight pounds in the last two weeks. I have to eat to feel better. Emotional and physical.

Although they said the goiter hasn't affected my thyroid I am still hoping it is the reason for my appetite and metabolism. I still don't feel like doing much of anything.

So I wait for the endocrine surgeon to call and make an appt. Tara my incision is getting better. Still draining but is going down in size and redness. Just keeping it lightly covered with gauze. This I also got advice on line otherwise I would be worrying because it wouldn't heal but now it is. On-line they said it may take a while so now I am not worried. I am on an antibiotic.

My vision is blurrier than before. I think it will get better though as I continue to heal. Although they said the tumor didn't cause any peripheral damage it was compressing the optic nerve. So the tests they gave me to determine if they should operate now as apposed to later, which I decided would be now, said I could wait. But just because it wasn't peripheral didn't mean it wasn't affecting my sight.

So backtracking a little. What does this have to do with my acromegaly? Well, when I was diagnosed with diabetes about almost a year ago, my niece, Tara told me to go see an endocrinologist. On my second visit with her she found my thyroid to be swollen. She said next time you are in if it is still swollen we will so an ultrasound. It was and an ultrasound found a mass on my right lobe. I was happy because I was sure this was why my hormones were out of whack and was the reason for all my symptoms. She told me my t3 t4 and tsh were all normal and my thyroid was functioning properly. I can't remember why but I told her I had sleep apnea right then. She said, "you do?" She ordered a needle aspiration and with  the results referred me to JHUH and their endocrine surgeon.

Well, I had an appt with my primary and was pretty upset that he hadn't found the swollen thyroid because I had asked him years ago why the glands in my neck were always swollen and he said it was just fat. I had also asked him why I was short of breath. Again it was fat pressing on my diaphragm. WRONG! I had a substernal goiter. So on this visit I said, "Look at me! You are my age. Why do you look so good? You look older but you still look like you!" He said looking at my chart, "Your endocrinologist also says you have metabolic syndrome. You have an appt in Baltimore so lets see what they say."  I left his office very angry and his credibility with me was zero! I had only seen my endo twice and he I had seen at least 4 times a year over the last 20 years.

I went home and went on line. I was still convinced I had Hypothyroidism but the only thing was with hypo you lose weight and I had gained, a lot and my tests were normal. So I kept looking at symptom checkers. I spent hours and hours combing through diseases with hormonal imbalances. I had FATIGUE, depression, hypertension, sleep apnea, diabetes, high cholesterol, skin  problems, excessive sweating, blurred vision, weight gain and on and on. These were the main symptoms that bothered me the most. Although, I was being treated for all these symptoms with drugs, Lisinopril, Welchol, Metformin, Pravastatin and Zoloft I was never able to regain my energy and my chronic fatigue kept me asking, why am I so tired all the time?

I work full-time job, 10 to 12  hours a day, and that was my life. I was so tired after work I would eat and sleep. Get up and do it again. My days off were sleeping in late. At one point I was sleeping 19 hours whenever I could. Eventually after getting on diabetes medication I would only sleep 12 hours. My primary said well at least you aren't sleeping 19 any more. I still had no energy to do anything but work. I am very proud and it did start to affect my work but I wouldn't let it so I chalked it  up to aging and metabolic syndrome(getting old and fat, treatment eat right and exercise) and menopause and gave it all I had at work just to come home and pass out. My kids thought I was lazy and I was drinking more. Red wine, consumed a couple glasses with my meal and slept the rest of the time.

The other symptom that really bothered me was sweating. It got really bad in the last couple of years. Of course I thought it was hot flashes and some of it was. It got worse though after menopause and I asked my primary about it. I told him that I sweat all the time and isn't there something that can be done for it? He said his daughter suffered from excessive perspiration and that I should carry deodorant and apply it several times a day. Again, a quick dismissive answer and didn't see him notate anything on my chart.

So my on line research led me to acromegaly. I wasn't convinced although I had every symptom except headaches. I never had headaches. My hands looked like my hands. My sweating was menopause. Sleep apnea was my throat, I've always been depressed. Do I look like that man? I look like the people with Hypothyroidism. I have felt my face is ugly, dark shadows in some light because of swelling, but I didn't know it was swollen. My feet looked like my feet. I have had to buy larger sizes. I went from 7 1/2 to an 11. I thought it was aging and that my feet went flat. So, I kept on looking.

It was in August, I was gong to  the beach with my niece and her family, my sisters and my mom. My older sister was going through chemo for Non-Hodgkin's Lymphoma of the neck. I promised her I would go the whole week and keep her company and my mom. I sometimes felt a hypochondriac around my family. I did frequently complain about my illnesses and my doctor and the fact that I was still so fatigued all the time. Another older sister was coming down and I asked her to bring her laptop. We hadn't had any computer and I missed getting on facebook and frankly trying to figure out what was wrong with me. I told my niece what I had found on line about acromegaly. She listened to me and never said no. She agreed with me. No one else had. I got on computer and looked it up to show my niece. A website I hadn't visited with another extensive list of symptoms. This one had enlarged tongue, lips, jaw and teeth spreading. That did it. With her agreeing and finding the jaw and teeth symptom, we both knew it as I showed her my bottom teeth. She said they are definitely spreading.  She said you need to take this info to your primary. I said I am first thing when I get home.

Needless to say it was very frustrating to have to wait but on that Monday I was able to see him. I took my shoes, my research, old and new pictures of me and my husband to the doctor's office. Looking at old pictures was very revealing. I had never liked what I looked like in pictures but when I looked at the early ones I actually looked very pretty. Why did I think I was ugly then? This is ugly, what I look like now! Because I had never liked my photos I hadn't noticed the changes. It is really strange because when I looked at the older pictures I could have sworn I saw what I looked like now, ugly. Why did I think I was ugly? That ones for the couch but I now see that I wasn't ugly and I still see the pretty me when I look in the mirror now.

I hadn't really prepared what I was going to say. I just started talking. I told him that I knew what was wrong with me and that I wasn't going to say what it was because he probably wouldn't believe me. I want you to listen to me then I want your opinion and then I want an MRI and a complete blood workup. He had no choice but to listen, with my husband there. I listed all my symptoms and showed him my shoes. These fit me last year but don't now. I told him I had pictures. He asked to see them and as he looked he commented how he remembers me this way. I let him speak. First, he said that acromegaly was very rare, that it did not cause diabetes but if it would make me feel better he would get me an MRI.  He gave me the necessary forms and we left. On the way out I was so excited I thanked him, hugged him and he said your welcome. Why did I thank him? He gave me the order for an MRI and that was all!