Today was my first appointment with the Endocrinologist (gland doctor). I talked to two doctors, one inspected my throat area and they looked at recent blood tests and previous ultrasound of my thyroid. They discussed the nodule as being vascular which has blood vessels in it and a biopsy could lead to bleeding. We discussed symptoms I have been having from feeling like my body is on fire to feeling extremely cold, weight loss at 10 lbs a week during “flares”. To trouble swallowing, choking when I drink or eat at times during flares. Trouble breathing usually during the evening hours.
They decided to start by ordering better imaging and seeing what the thyroid is doing from what I understood. They also ordered more blood tests which I did before we left. As we were pulling out of the parking lot I received a call from their office. The imaging appointment had been setup, it is a two day test and I must not eat any seafood for 7 days prior to the test.
Day one I will go in at 9:30 a.m. and take a pill around 10 then wait 4 hours and go in for the images. Then I will head home for the night probably around 4 p.m.. The next morning I go in at 9:30 for images again. Sounds fun right? I do this in about a week, then go back for results around mid August.
It seems pretty common to see other RA patients that have a long list of diseases and medications listed in their forum signature. Sometimes the symtoms of the multiple diseases commingle, making it hard to know what is causing the issues. Sometimes while talking to other RA patients we discover we have some of the same symptoms that we have not discussed or mentioned to anyone. That happened to me this past week on Twitter while discussing in direct messages some symptoms with another patient who is currently having thyroid test done as well. The symptom we discussed was the feeling of our tongues stiffening at times. We did not go into more details but I will explain how it happens with me.
At times I have felt like my body was on fire and during those times I usually lose weight quickly. But also during those times sometimes I get so cold that my body will not stop shaking (hard shivering) and it just seems to get worse until it feels like the back of my tongue is stiffening up or getting hard. I have found if I get myself under blankets I slowly start warming up and the coldness stops. Both being overheated and severely cold are very scary. These symptoms are usually happening during a hard flare, for me the last time was during a hard shoulder flare in January when I had trouble with the weight of my head causing increase pain (see Bad Week, Hard Lessons). But the feeling of being extremely cold happens less for me than the feeling of my body being on fire.
So here I will try to list the symptoms I have or have had since December of 2003. How many of these symptoms have you had? Continue reading
Yesterday I went back to the Rheumatologist to get results of my blood tests and to have an ultra sound done on my thyroid. We went over the Vectra DA blood test, which I scored a 33. This means my Rheumatoid Arthritis aka Rheumatoid Autoimmune Disease is at a moderate level with the current cocktail of drugs. I will be having another one in three months to get a new number. It looks like anything above 44 is high activity (severe) and under 29 is low or mild activity. It sounded like the goal is to get it under 10. You can find more out about the Vectra DA test on their website. Vectra DA does have a program in place for financial assistance. For an example a single person having an income less than $54,450 a year could qualify.
Most of my other blood test came out good. Rheumatoid Factor still negative, no TB, no hepatitis, no lupus, anti-CCP negative, Cholesterol good, etc. The bone denisty test was good also.
The tests that were not good were:
Vitamin D issue fix will be to add a Vitamin D supplement at 2,000 IU a day to my cocktail. Also adding an Omega 3/6/9 supplement. and I have a refill for the Flexeril which was added to treatment at my last appointment 2 weeks ago. It has taken that much time for me to get used to the muscle relaxers and it does take 3 a day at 10 mg to be almost pain free. I have not been this pain free since fall of 2010 so it is a nice change.
I am not sure what the lipid or thyroid study or the CRP Hi Sensitive means. Maybe the thyroid is off because of the nodule on it? After finding out the blood test results I had an ultrasound done on the thyroid and she also did I think it was called an ECG but not sure. I will get those results in 2 weeks. She did ask if my previous scan reports gave a size of the nodule, I did not remember a size mentioned for it only the size of lymph nodes that are swollen. She said it should be checked every 6 months to make sure it is not growing. But nodules in the thyroid can happen with Rheumatoid Arthritis. She noted that besides the nodule in the right lobe of my thyroid that I had a very tiny cyst on my left lobe and that my heart looked good.