Connect
Why do I have to fight so hard for answers?
I am 41 and I am actively taking thyroid medication for hypothyroidism, and have been for just over 15 years, but I am still struggling for a balance. I was diagnosed at 22, with minimal knowledge, and lack of direction. So I stopped medicating after a significant "episode". My first two pregnancies had no issues and blood all came back normal but my third put me right back and I have been on it since. But it was only 12 years ago that I was recommended to see and Endocrinologist and I have been with them since.
They built my trust when they finally listened to me and for a while I thought they were great. But in the last couple of years I have started doubting their guidance. It wasn't until the last couple of weeks that I learned of the thyroid antibody test, one that I was just tested for by my primary doctor. Not my Endocrinologist. Why didn't they test me for it? They did an ultrasound within the first year of becoming their patient, and I have had multiple occasions of having to make adjustments to my medication, both lowering and increasing the dosage and changing brands. Most recently as of March where we changed my brand and dosage, so now I'm up to 200 mcg 6 days a week.
As of my latest bloodwork with my TSH, T3, and T4 are all in range. The antibodies for Grave's is negative, but my antibodies for Hashimoto is positive, the number is in the 80's so it's high. I've been on medication (yo-yoing for over a decade straight). I have other testing for some symptoms I have next week, but all my doctor is saying is "labs are ok...nothing to cause your symptoms". Does this mean I actually have Hashimoto and it's not just "hypothyroid" because I was never fully told.
Like
Helpful
HugInterested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.
Connect
It sounds like your primary doctor is doing more for your endocrine issues than your endocrinologist. Who has recommended the lab tests and thyroid med dose changes over time? Could you ask for a collaboration between your primary and your endocrinologist? This way both providers could review your history, lab tests, medication & dosages, symptoms etc. to make sure that everyone is on the same page to get you a treatment plan that best suits your needs.
I am diabetic and have chronic kidney disease. I have a primary, an endocrinologist and a nephrologist all in the same healthcare system. Whenever I have tests, medication &/or treatment changes I know that all my docs have access to each others’ notes. It keeps everyone accountable and gives me the most thorough and consistent care.
Keep asking questions of your providers and don’t stop until you are satisfied with the explanations they give you. This is the best way for you to help them help you.
-
Like -
Helpful -
Hug
5 Reactions@cehunt57 Sorry to hear about your health issues. My current primary I have only had for just over a year because I have had to switch a few times. The one that I liked the most a few years ago retired before I could address the current issues I'm addressing now. (Not thyroid related) My Endocrinologist has been the one I have consistently worked with for any and all thyroid related issues, especially with my three different doctors, she is the one I have had the longest. My primary is the one who has ordered the most recent and I make sure that my Endocrinologist gets sent copies of labs. It also gets shared in the network that my Gynecologist is in so she can see results if necessary because my primary is in one network while the other two are in a different one. I am still asking questions because I have a current issue that I'm trying to get figured out. As of right now it's not thyroid related. I'm just incredibly frustrated with medical professionals. It seems like I get more information doing searches than I do from doctors who want to keep telling me to "change your diet".
Do you have family members with thyroid problems? My grandmother had to have her thyroid removed at a very young age because she had a goiter growing, and the goiter became very large. When she went into the nursing home, the doctor refused to give her the Iodine she was Taking for her thyroid replacement. The Goiter came back, blocked her airway And that is what killed her. I found out what she was taking because I was having the same issues when I was very young.
Check your grandparents to see if any of them had thyroid issues or aunt and uncles.
Wish you the best.