To really rule out Hashimoto you need to test TPO and TgAb antibodies. Then Free T3 and Free T4 levels, don't rely on TSH.
Hi Amy,
I cannot speak to all of your symptoms because I'm a guy. :) But I can relate to the frustration around knowing your body and being told its not your thyroid. I had two nodules (lumps on thyroid) that actually could be felt and seen. I started getting hyper symptoms pretty bad (tremendous anxiety, tremors, short temper, sweating, muscle aches, tingling, numbness all sorts of crazy stuff) I had my thyroid levels tested 4 times over a period of 5 months. (once was literally when I was sitting in my dr's office shaking, sweating, and a complete mess...the test came back "normal")
I then went to a top notch endocrinoligist who ran a complete panel on me and it still came back "within normal range". It wasn't until I had another terrible flare up that they finally caught my levels "out of range" and hyper. The only thing that kept me persistent was the lump on my neck was there and everytime it swelled up my symptoms came back. I was a perfectly healthy person until then.
I ended up having surgery to remove the overactive nodules. (please dont freak out, I was a rare case of having a "hot nodule".)
I am now in the process of feeling hypo, achy muscles, tired all the time, swollen achey hands etc......well I went and got my levels tested 5 weeks after surgery and my tsh was 2.6. I thought for sure the endo would say "yes you probably need some thyroid replacement"..NOPE....his response was "the symptoms aren't your thyroid, fatigue for a few months after surgery is common and if it continues you should look for other causes" Now keep in mind the new normal top level is 3.03. So if my test was just 15% different then I would have been labeled "Hypo" and could have gotten started on replacement meds. Its a very small window.
my plan is to wait a few more weeks and see if things improve, if they don't then I am getting my levels tested again in spite of what he said. I am not hating on dr's by any stretch, what I am trying to tell you is you know your body, if you have a lump on your neck that could be a thyroid nodule and it could be throwing off your levels and causing you symptoms. Unfortunately you almost have to "hit the jackpot" and have your test come back abnormal for them to believe it is the thyroid.
If you had your thyroid level tested make sure they test TSH, Free T4 and Free T3. Also have them test your thyroid antibodies. Your TSH can lag behind your symptoms and not be a true indicator of your actual thyroid levels. Of course at my last test they didn't do that, they only tested TSH. My Dr said it is because he ordered it as a reflex test meaning if the TSH is out of range then the lab would automatically run the other tests, if its in range they call it a day.
Be persistent and get an answer to your questions. If the Dr doesn't think it is thyroid then tell them to test you for things it may be.
When I started having these issues I did a lot of research and I would see people posting all the time about how difficult it was to actually get diagnosed. Funny but I ended up in the same boat in trying to get a diagnosis as well.
Good luck
Hi Amy,
Any lump deserves attention. Do not be fearful, but do be pro-active. My TSH numbers were in range over the years too - all the while I had undiagnosed auto-immune thryoid disease (Hashimotos Thyroiditis) that was attacking my thryoid gland causing nodules to form. Now I have to have needle biopsies performed every 6 months.
Ask your doctor to run thyroid antibodies test for you. TSH can be in range even though your thyroid hormones are below optimum levels.
Like you said, you KNOW your body and you can tell when something is up. If your current doctor will not investigate - find a doctor who will. You will read on this forum how people suffered for years expecting their physicians to help them, only to be given anti-depressants and referrals to pyschologists when it was a thyroidand hormonal issues all along. I went to four doctors several times over an 11 month period to FINALLY get my diagnosis of thryoid disease. Good luck!
I have also just noticed over the last couple days a large lump on the right side of my neck towards the collar bone. I don't know how long it has been there. I just wish I could get someone to listen to me.. It is so depressing to know you have a problem and pretty much have diagnosed yourself but your doctor won't listen. I have some labs to do Monday morning and I think I am going to see my doctor as soon as I am done about this lump.