So I am not from that side of the pond as most of you are. I happened upon this site by happenstance & have found it very, very informative. So thank all of you up front for sharing your stories, experiences, ups & downs. It has made me feel normal in a very not normal world.
I have been considered hypothyroid since 1999. I have been put on & taken off levo several times throughout the years. Tests come back normal & they will down my dosage - come back what they consider normal again & they take me off. I go back in 4-5 months because I am worse than ever & they put me back on. Right now I am only taking 125 mcg of levo 1x daily & 50,000 units of D3 1x per week.
I have been to several doctors & most of them do not want to listen. I have been told that I am overreacting, this is normal & just part of how some people with hypo react to the meds & I have been told that I am flat out crazy & need to see a psychiatrist to get a hold of myself. Needless to say I have not been back to one of those doctors.
I went in July & was finally diagnosed with Hashimoto's by my new GP. She actually listened & ran tests that I didn't think she would run. One of those was to check my RA factor & my vitamin D levels. Vitamin D is extremely low & my RA factor came back high. So she referred me to a rheumatologist & an endocrinologist. The endo I went & saw is the one that told me I am crazy. I didn't go back to him. My rheumatologist requested further testing & that is the main reason that I am writing.
Tests were conducted on November 18, 2016:
Vitamin D - 17.5 (Abn: L) - this is after being on 50,000 units since July 2016 - normal is 30-100
Sed Rate - result 9 - normal is 0-30
Creatintine Kinase - result 54 - normal is 30-223
CCP Antibody - result 0.8 - normal 0-5.0
ANA (Antinuclear antibody) - result detected (Abn: A) 1:320 or greater (Abn: A) & Nucleolar (Abn: A)
Rheumatoid factor - result less than 10 - normal less than 14
ANA profile (dsDNA, Sm RNP)
DsDNA Antibody, IGG - result less than .1 - negative
Sm/RNP Antibody, IGG - result 2.5 - less than 16 negative
Scleroderma (Scl-70) AB - result 3.4 - less than 16 negative
JO-1 Antibody, IGG - result 2.3 - less than 16 normal
SSB (La) Antibody, IGG - result 1.1 - less than 16 negative
SSA (Ro) Antibody, IGG - result 1.7 - less than 16 negative
He also took xrays of my ankles & hands & they show no erosions, no significant osteoarthritis.
So I go back to see him in April 2017 to conducted these tests & xrays again because I had a positive ANA test.
I am scheduled with a new endocrinologist on March 3, 2017. He is highly rated by several of my friends & it took me 2 months to get the appointment scheduled & then I had to wait 3 months for the actually appointment.
My question is what do I ask him? I have 3 typewritten pages of issues that I have going on. From pain in my joints, to fatigue, memory issues & on & on. My rheumatologist thinks that it is all thyroid related, but he is hesitant to explore any further testing into my thyroid because that is not his area of expertise.
What tests should I ask for when I see this new endo? How in depth do I go at our first appointment? Should I just give up & keep living with the pain, the mood swings, the fatigue & the hopelessness? I don't want to be like this anymore & no one in my family understands. They try to, but then they get angry because I don't feel like doing anything & struggle just to go to work. It is causing so much stress at work & at home it is ridiculous.
Some guidance would be greatly appreciated. Thank you for taking the time to read this.