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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.
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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.
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6 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.
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1 ReactionWhich antibodies are you talking about? TPO or Tg?
From my understanding (I have thyroid problems), the presence of anti thyroid antibodies means you are much more likely to develop an autoimmune response against your thyroid, resulting in thyroid problems.
So it’s possible you have Hashimotos that causes your hypothyroidism. I’m not sure if it matters what caused your hypothyroidism- if the treatment is the same no matter the cause, perhaps it doesn’t make a difference. Maybe that’s why they didn’t test you, because you were already symptomatic.
I think it’s worth clarifying with your doctor for your peace of mind and to keep communication open. You may feel better the more you understand what is going on and what are the best steps for treatment going forward.
Best of luck!
@minnesota10 I was the first in my family to have thyroid problems. My dad had the basic hypothyroid disorder because he had tonsil cancer years ago and the chemo radiation side effects resulted in thyroid deterioration. My dad's side is diabetes and cancer, my mom's has some cancer and both have heart disease. My mom's is harder to know health issues because no one talks about health problems. They don't talk about things.
@ashleyharris728 It was the TPO antibody test for Hashimoto that tested positive. I followed up with my primary who ran the tests and she in a round about way confirmed it was likely Hashimoto based on the positive antibodies present. For me it was knowing if it was just the disorder with hypothyroid or if it was the disease with Hashimoto and the autoimmune so that I can understand better. I follow up with her in two weeks with labs and other things being tested so I guess I will find out then if there will be a change in treatment of any kind.
@kaylann85 I hope you get the answers you need to get a treatment plan going that works for you. It can be so frustrating to navigate the health system especially with incomplete information.
For what it’s worth I also have high TPO antibodies and do not have Hashimoto’s; there are other things needed to make that diagnosis I believe. I really freaked out when I saw how elevated these antibodies were but I was told basically the same thing - as long as the other labs are normal, don’t worry about it. (Well why did you test for it then, was my question? Nobody could give me a good answer)
Let us know how things go and hope you feel better soon.
ashleyharris728:
A lot of times we develop a condition for which the medical industry has no cure (yet). If the condition is non-fatal, the doctors tell us "Don't worry about it." If we do worry about it, we will often make it worse! So do what the doctor says and don't worry about it. If the condition is fatal, you get to join a group that has it, for support.
Today ALS is fatal. One of these days the docs may have a breakthrough and find a cure/fix. It is a shock to our systems when we get the diagnosis with the accompanying comment of "From the time of diagnosis is an average life span of about two years. The distribution curve is not even over time. (The standard bell shaped curve, rather it is a student T curve heavily weighted at one end and the other end has a lot of outliers. My wife lasted 2 years, 8 months. A nearby college Dean of Men lasted 4 years. Stephen Harkins lasted over twenty years.
I have right Atrial Fibrillation. Yes I was told not to worry about it. I am now on Eliquis as a blood thinner.