Hypothyroidism Diagnosis: Not sure what to do at this point

Find a good endocrinologist. They will listen to your symptoms and adjust based on them along with all of your thyroid test, and they should be testing tsh, t4, .and t3. All are important.
Your TSH could be high for you. Even at 4.0 you could be hyperthyroid and you could be hypothyroid... A lot of the symptoms crossover with each other. But they all definitely sound like a thyroid disorder. I have hashimoto's thyroiditis myself. It's really complicated, and even a lot of endocrinologists mistreat it.

Did you test your thyroid levels under the same conditions i.e. same time of day? I have read recommendations thyroid labs are best drawn first thing in the morning before your thyroid medication & any breakfast.

I recently participated in the American Thyroid Association Patient Education Forum. I specifically asked (in a break out group) why FT3 (Free T3) was not tested. I recall the doctors saying something to the effect it was difficult to register a accurate FT3 blood level. That the body has FT3 located in multiple sites. A good doctor will work with a symptomatic patient to understand why.

My limited general understanding is that when one has a “Hashi flare” thyroid hormones may be spilled into the blood stream & consequently spike the blood level afterwards. Many thyroid patients test for any gluten issues & make other dietary changes to try & reduce these flare ups.

You are very smart to start so young troubleshooting your thyroid signs & symptoms. A Pharmacist by the name of Dr. Izabella Wentz was afflicted by Hashimoto’s at a young age too & she has chronicled her early struggles in books as well as online. She has turned her thyroid journey into a life long career passion seeking to help others struggling with this diagnose.

If you haven’t read her story you might cull helpful pointers you can discuss with your doctor from viewing online how she mastered her thyroid setback. She has published much & continues to be a source of inspiration to those trying to sort all this out!

Congratulations on your parathyroid discovery/treatment. Thank you for sharing.

Hopefully you have delved into the following which I will mention just as a reminder: It is said that thyroid hormones require optimum vitamin D, vitamin B-12, folate & ferritin levels to function properly. Those are said to be the four bases one must keep covered (optimal) at all times. If you haven’t checked them in a while you might consider doing so just to rule them out as a contributing factors to current concerns.

You have the will, I trust you will find the way to gain comfort with your health again.

Congratulations on your parathyroid discovery/treatment. Thank you for sharing.

Hopefully you have delved into the following which I will mention just as a reminder: It is said that thyroid hormones require optimum vitamin D, vitamin B-12, folate & ferritin levels to function properly. Those are said to be the four bases one must keep covered (optimal) at all times. If you haven’t checked them in a while you might consider doing so just to rule them out as a contributing factors to current concerns.

You have the will, I trust you will find the way to gain comfort with your health again.

Hi there. I know this is long but hope its worth the read. I was diagnosed with a prolactinoma pituitary tumor. However, in all honesty, I think the doctors question what kind of tumor it really is. For prolactinoma, my prolactin level should be in the hundreds or thousands. My blood work showed it was at 57- high enough its a problem, but not high enough to be prolactinoma. The following was diagnosis from a variety of docs I saw: 1st primary physician- carpel tunnel, 2nd primary physician- I am over weight. Rheumatologist- 1st visit-I have gout. 2nd visit- fibromyalgia. 3rd visit depression. When I saw my endocrinologist, he said it was my weight; the tumor had nothing to do with the pain. When I saw the neurologist he didn't even want to hear about my symptoms. His goal is to get the tumor out. With obvious frustration, I called Mayo and thankfully, I see an endocrinologist and a neurosurgeon soon.

In the mean time, I have been researching pituitary tumors and joint/muscle pain, and I fall short every time. Then it dawned on me to research hypothyroidism (which I was diagnosed with when the tumor was found November '19). I have all the symptoms of hypothyroidism, one being sever muscle/joint/bone pain, swollen hands/fingers and feet, and carpel tunnel like symptoms, to name a few. (in my own research, I believe) my body pain is a result of nerve damage from hypothyroidism going untreated. I noticed something "off" with my body almost 2 years ago. I just assumed it was because I am aging, not as active, and overweight. Turns out the tumor and hypothyroidism has slowing been creeping up on me.

And interestingly enough, I stumbled across an article (that I didn't save and can't find on the internet) that quoted a doctor. It basically sates, patients need to listen to their bodies and not just go by what blood work shows. I guess blood work doesn't always show there is a thyroid issues because our hormone levels change throughout the day. He advised to talk to the doctor about all the symptoms regardless of the blood work results.

What time of day was your blood work done? Mine had to be done before 8:30am every time. Maybe that is a reason yours was not consistent. ??

I would get a second opinion from a different endocrinologist. I had and still have some of every single symptom you listed besides shakiness. And to add to the list: heart palpitations, thinning hair, hot flashes (tho i feel you may have described), dry skin, swollen fingers. I believe my synthroid (thyroid medication) needs to be increased.

I know this was lengthy, but I hope it helps. I hope you get the answers you are looking for. My next research is going to be nerve damage and how/if/when it will heal. I hope I will be pain free once my tumor is removed and my thyroid gets back to normal!