About nine years ago, I had routine blood work done that showed I was hyperthyroid. I didn't have any symptoms except a racing heart. I lived in WY at the time (limited medical care), so they sent me to an Endo. in Denver. The Endo. did more blook work and did an uptake scan. She said I had Graves. I was put on Methimazole 10mg and after two months, it was lowered to 5mg. Unfortunately, I don't recall how long I was on it, but I do know my thyroid #'s started getting better, which is why they lowered the dose after two months and eventually, they returned to normal. At the time, I had just stopped smoking and was taking steps to live a healthier lifestyle. I took Chantix to help with the smoking so I thought that either the stress on my body of quitting smoking or the Chantix kicked off the Graves Disease and thought that would be the end of it. As a side note, I also thought my racing heart was from the Chantix until I found out I had Graves.
Unfortunately, I started smoking again after about eight months or so. I tried quitting 5 weeks ago, but spent two weeks waffling back and forth between smoking one day and wearing the patch the next. I started feeling sick (like the flu) and thought it was likely because I couldn't make up my mind whether I was smoking or not, so I made up my mind to get serious and quitting and stopped altogether. After two days, I felt worse. I was worried I was having an allergic reaction to the patch, so I quit using them and stopped cold turkey. After the first week of cold turkey I still felt bad so I went to the Dr. (small amt of congestion, nausea, eye pain, sore throat, inability to fall asleep, ear pain, foggy headed, confusion, etc. Since they squeezed me in, I saw a Nurse instead of a Dr. She said it was a sinus infection and gave me antibiotics. After two more weeks, I no longer felt like I had the flu, but I still felt horrible. I felt dizzy several times each day, I had anxiety, a racing heart, irritability, shaking hands, still had mild eye pain (like sinus pressure) only now my eyes were watering (out of the outside edge, not the inner edge). I was fatigued, and I had no problem falling asleep, but I was waking up almost every hour. I was falling back asleep easy enough, but waking up so often affected how much sleep I was getting. I was also super emotional and still not 100% mentally or intellectually.
I went back to the Dr (and saw a Dr this time, not a nurse). I told him about my symptoms and he ordered a blood test and a CT scan for a swollen lymph node above my collarbone. It's not where the thyroid would swell, but appears to be where the supraclavicular lymph node is. This is actually not something that started with the other symptoms. I've had it for several months, but since it is soft and not hard like most cancer nodules in that area, I wasn't concerned about it so decided the next time I went to the Dr., I would mention it. I mentioned it to the Nurse on the first visit, and she said definitely come back in if it was still there after the antibiotics, which it was. I doubt if it is related to everything else, but wanted to mention it.
That Dr. visit was last Tuesday, the 20th. I still feel the same, except my dizzy spells are now only about once or twice a day. Other than that, everything else is the same. Some nights, I get good sleep, but other nights, I wake up a lot during the night. The Dr. office called me back on Wednesday evening and left a message for me to call them in the morning. I did but was told that Dr. and his staff were out but they would have them call me back when they were back in.
I thought that was odd, but remembered that they post medical records online the same day, so I didn't press it and signed into the medical record portal to see my blood results. What a shocker. My Thyroid results show my T4 free is 3.20 ng/dl, T3 Free is 12.49 pg/ml and my TSH is less tahn 0.005, so I'm hyperthyroid again and I'm pretty sure that means the Graves is back.
Since I didn't have any symptoms last time, I didn't think about it so didn't point out to the Dr. that I've had it before. I've had my medical records sent over about five or six years ago, but don't know if they looked that far back on this visit, so I called them back to bring it up and asked when I would hear back since I am extremely symptomatic and would like to start fixing this as soon as possible, especially in light of my eye symptoms. I also realized my vision has been getting blurrier over the last few months, but I thought it was a sign of aging. Now I'm worried about it. They told me this Dr. & his staff wouldn't be back until next week!
In the mean time, the imagery place called me to schedule the CT scan for the lymph node and I told them it looks like I'm hyperthroid again and might need a scan for that also, but the Dr. is out. They told me to put the CT scan on hold and wait to talk to the Dr. so I don't have two separate tests done on two dates, when they could combine everything. So I'm waiting and since one of my symptoms is irritability, I'm extremely irritated at the Dr. & his staff for being so blase about everything. This is a clinic with lots of Drs. & lots of Staff, and he is a fill-in for my regular Dr. who had too many appts the day I came in to see me. I feel like he could've given her an update and had her talk to me about it asap, instead of having me wait four more days, in addition to the past several weeks when we didn't know what this was. Sorry for the long rant. My excuse for being so long winded is I haven't started treatment yet and am symptomatic.
At this point, I don't know what he's going to do or suggest, since he didn't seem to concerned about having me wait for him to get back. If he says he wants to start me on meds and leave it at that, I know I should still make an appt with an endo (probably the one I saw last time). But should I start the meds before I see the endo, or wait? What if he refers me to an endo, but the endo has a waiting list of a month or more? Last time, I recall a long wait, but I wasn't symptomatic, so I didn't worry. I'm really concerned about my eye symptoms since I've read any damage to the eyes by Graves is likely irreversible. Am I panicking over nothing, simply because I have anxiety from the Graves?
Also, on a side note, I've noticed a lot of people say they had a really hard time getting a diagnosis from their Dr. Do a lot of Drs. not do blood work or do they not take it as seriously as they should when the thryoid numbers are all out of wack? I'm just trying to understand how a Dr. could miss it when it's very obvious on a cbc panel.
For those who made it to the end of this long diatribe, thank you! And thank you in advance for any help.