I received a letter from the Royal Brisbane Hospital today. I have been moved up the list as to Category 1: Urgent and will hear from them 4 weeks before an appointment date is set with the Thyroid Clinic. I have no idea what this means. They must have received my results via my doctor. I must make that appointment today and find out the diagnosis. I am having mixed emotions about it. I am excited because I am getting closer to better health. But I am also scared because I do not want to undertake RAI Therapy as mentioned by my doctor. I just don’t feel right about it.
Today I went in to have my radioactive iodine uptake and CT scan on my eyes.
A radioactive iodine uptake (RAIU) test uses a radioactive tracer and a special probe to measure how much tracer the thyroid gland absorbs from the blood. The test can show how much tracer is absorbed by the thyroid gland and if it is evenly spread in the gland. This helps your doctor know if the thyroid gland is working properly. The radioactive tracer commonly used in this test is iodine.
A radioactive iodine uptake test is done to find problems with how the thyroid gland works, such as hyperthyroidism. An RAIU test may be done at the same time as a thyroid scan.
Why It Is Done
A radioactive iodine uptake (RAIU) test is done to:
- Find the cause of an overactive thyroid gland (hyperthyroidism).
- Plan treatment for hyperthyroidism.”
I arrived at the Radiology provider early, and to my suprise there was a massive sign at the desk saying they don’t bulk bill. I questioned this immediately, As I was told that these scans would be bulk billed and I was not prepared with the cash to pay for them. I told the receptionist that I didnt know there was an upfront cost and she asked me if I had been given a quote over the phone when I booked. Which I didnt. Nor was I told to fast, but I did anyway to be safe.
I asked how much it would cost me, to be told It would be $800 upfront and I would get back about half from Medicare. I could feel the tears start swelling up in my eyes and my chest hurting. I knew we only had $200 left for food, nappies and groceries until pay day in 2 weeks. There was no way I could pay for this. If I had been told the price beforehand I could have borrowed the funds from my parents, but it was too late. I told the lady I would be unable to have them done and I would have to come back in 2 weeks when my husband gets paid. She had a look at my request forms and to my surprise she said to me “ If you can get your doctor to fax a letter to us now recommending we bulk bill you, we can do it for you with no cost”.
I was so humbled at this act of kindness (most health care providers would never do such a thing) that I quickly rang my surgery and spoke to my doctors administrator. I explained my situation, and she was more than supportive especially knowing we had two children and that I wasn’t working. She advised she would leave an urgent message for my DR to fax the supporting letter as soon as she arrived that morning. In the meantime I was allowed to have my scans without having to wait. I felt so incredibly grateful.
My scans were a piece of cake. I was given an intrevenous injection in my inner elbow, of radioactive iodine. I discussed my concern of being radioactive and was told not to have close contact with my toddler for 12 hours. I then went on to lay down very still on a machine that did about 6 x 5 minute scans of my throat from front and sides. I was freezing cold, and they gave me a blanket to keep me warm while I rested on the machine. I heard the two radiologist discussing my scan, and overheard one of them say ” it’s full”. I didn’t jump to the conclusion it was but thought I should ask what I overheard. Once the scan was finished I asked the radiologist if he could tell me if my thyroid was full but he smiled and said ”no, I can’t tell you”. Oh well, I gave it a shot. Then, once I was finished I went on to have my eyes scanned.
I went into another room were I was laying slightly upright in a machine that kind of looked like a giant hoop. It zoomed in above my face and I closed my eyes whilst the scans were taken. The machine made a strange whizzing noise like a washing machine and was over in a couple of minutes.
It was all finished in a few hours and I went out to grab a coffee and called my husband to pick me up. Now I am home and have been banished to the study whilst my husband is working from home whilst looking after our toddler. I have to keep my fluids up to flush out the radiation, and will probably use this time to work on some of my assignments. By later this evening I will be able to give her a cuddle again, but probably will wait until tomorrow just to be safe. It will take a few days for the results to be delivered to my doctor, and I will find out then what the official diagnosis is.
I am feeling a little optimistic at the moment. Call me crazy but I actually am relieved that my doctor has told me that I may have Graves’ or Hashimotos disease.
Why? Because it is a treatable disease, and I have something tangible that may help change perception about my illness.
Being diagnosed with Fibromyalgia a year after I had Subacute Thyroditis was a let down. I knew that I would find it very difficult to get answers. What I have learned is that there is no magic cure for Fibromyalgia. You just deal with it. My doctor was fairly supportive, my parents were fabulous, my husband tolerated it but there were other people around me who didn’t offer support or show me any kind of grace.
There were many times that I was unable to cook dinner for example, and my husband had to take over the kitchen department because I was always too sore. There were weeks that my parents had to take my daughter to school because I was so fatigued that I was unable to leave the house. Other times I would stay in bed all day because I was both. And I got judged. I was judged for being lazy.
There will always be someone out there who will judge us. Family. Friends. Doctors. In-laws. Classmates. Team mates. Teachers. Employers. Other parents. Colleagues etc.
Knowing that these people thought that way towards me made me feel even more defeated and extremely depressed. Being in the same vicinity as these people felt awkward and made me even more upset. I could feel the tension and hear the eye-rolls. I was in pain. I was exhausted. All I wanted was support and understanding. It was already a huge effort just to get dressed and be there. My husband would do things for me because he understood that getting up and down was tiring for me. I think that made people more pissed off and judgmental. This lack of support and feeling of hopelessness made me feel so low that I started to become very distant. I stopped talking. I stopped seeing anybody. I even deleted my facebook for a while. I often thought about committing suicide. The only thing stopping me was the fact I couldn’t gather the energy to do it, and I didn’t want my kids to find me.
After extensive sessions with a psychiatrist, my husband and I took a leap of faith and moved interstate. It was the best decision we made. The depression went away, and the symptoms eased. I had more energy and I was able to cope with the pain better. I even went back to work for a while.
After a year of living in Brisbane, I started to feel overwhelmingly fatigued. I went to a local doctor to see if there was anything he could do to help. As soon as I mentioned “fibromyalgia” a wall went up. He said it was psychosomatic and there was nothing he could do to help and I walked out with an empty purse. I refused to accept this and made a mission to find a doctor who would help me.
Since then I have found two great GP’s who are 100% supportive and understanding. If you find one that is not supportive, don’t give up because there will be one who is. Google searches, forums and joining facebook support groups helped me find a great doctor who specialises in CFS/FMS in my city. I had to wait 3 months to see him but it was worth the wait.
I hope that this might comfort other sufferers out there that you are not alone.
Have you been judged, and how have you overcome it?
I decided to start this blog as a way to document my journey with hyperthyroidism, chronic fatigue and fibromyalgia. I hope that by doing so I will be able to have a log of all of my progress, that will enable me to recall my experiences. I also hope that by sharing my story I can help make people more aware of these illnesses and how debilitating they can be. The most important thing we need to move forward and regain our lives is acceptance and understanding.