As you all suggested, I went to see a real doctor regarding my thyroid.
And just as I suspected, everything came back perfectly normal.
Whee! Nothing is wrong with me!
Oh wait, I still feel like crap.
And I am still 100 percent convinced that my endocrine system is to blame. Shockingly, I have become extremely somewhat obsessed with researching this on the internet. My favorite site is called StoptheThyroidMadness.com. It’s chock full of reasons why diagnosing thyroid issues isn’t as easy as relying on a blood test.
Just for a second, pretend you’re interested in what I’m saying and read this quote from WomentoWomen.com:
In publishing new clinical guidelines in 2002, the American Association of Clinical Endocrinologists fairly dramatically formalized a reversal of its previous doctrine, establishing a narrower “normal” TSH margin of 0.3–3.04. At Women to Women, we have used the TSH thyroid test for many years as a screener. And in our view, a woman’s TSH level should ideally be less than 2.0, but she should also be thriving and free from hypothyroidism symptoms. If she reports symptoms, or shows a TSH level greater than 2.0, she may have subclinical or clinical hypothyroidism.
So let’s recap – 3.04 is technically the upper limit of the normal range, but in their opinion, the level should be less than two. Mine is 2.9. Perfectly normal? Or causing the 18 thyroid-related symptoms I exhibit?
My doctor recommends a shot of B12, which did come back low on the blood test, and a sleep study. She probably has a point there, as I had one probably 10 years ago that came back inconclusive. My sister has narcolepsy and my dad and Jenny’s mom (and dad too, but we’re not genetically related. I don’t think. But in our families, it’s always a possibility) have sleep apnea. And since I can’t think of anything I’d rather do than sleep, it’s safe to say there might be something going on there.
But, I feel compelled to continue to pursue my other symptoms, too, which are at the least mimicking hypothyroidism.
Any experience, advice or suggestions? I’d love to hear them. (This means you, Dr. Almost-Cousin Mackenzie.)
Low B12 results in many of the symptoms you described. But, you’re right, the change in TSH goal is very confusing and frustrating. I usually test TSH, freeT4 and T3 in symptomatic patients, if this wasn’t done, ask for it! Sleep apnea seems kind of unlikely as you’re thin and under 40, but absolutely worth investigating. It’s really important to diagnosis and treat sleep apnea as it can lead to heart failure, pulmonary hypertension and all sorts of other awfulness. And you just thought it was about snoring and getting a super sexy mask!
Would a B12 level of 330 cause me to feel like crap?
And wait, did you say I was thin? Between that and your liberal-ness, you are totally my favorite cousin now. I’m dropping the almost-.
Have you gone to an actualy endocrinologist? I was having thyroid issues about 5 years ago, my doctor said I was fine at first, then later diagnosed me w/hypothyroidism but put me on such a low dose of synthroid that it was almost pointless. I continued feeling horrible but my dr kept saying I was fine. I went to an endocrinologist and he explained that what is “normal” isnt always where our levels need to be to “feel normal”. He also did an ultrasound on my thyroid. I ended up having thyroid cancer and had to have a thyroidectomy. I’m sure you dont have thyroid cancer! My point is just that you know your body and know if something is wrong. If you still dont feel right, go to a specialist.
Soooo frustrating. I don’t think we all fit into # ranges! Having “nithing is wring with you” results on the sleep study I had done years ago is one of the great frustrations of my life…still can’t sleep, 5 years later. I hope your doc will work with you to actually find some solutions! Or maybe Cousin Mack can just start writing us scripts… Ha ha ha just kidding medical police!
I have sleep apnea as well. So, we are probably more closely related than we think!
Get better or get a better doctor!
UP
I went to see i doctor once and told him I was certain I had narcolepsy. He told me, “no, you don’t. Your probablly dehydrated.” 3 years later, I was diagnosed with… narcolepsy. I’d tell doctors that my muscles went weak when I laughed, and they’d pay no attention. But that’s a very, very clear sign of narcolepsy. At the end of the day, you know if you are feeling weird. But its hard to find someone who will listen and not act like you are crazy. When I did my sleep study, Dad left me at the hospital by saying “I hope your test fails with flying colors!” I hope the same for your thyroid tests.
Plus, that doctor that did your sleep study was a wak-a-do. and he looked (and talked!) like Goildmember from Austin Powers.
Like!
Go for the sleep study to at least rule that out! I would say they have made progress in the last 10 years that hopefully something more accurate or helpful could be found out now. I had a dear older friend of our family just recently who was just not himself at all – I think we were afraid it was onset of dementia or something. Anywho, turns out he had a BAD case of sleep apnea – only getting like 30% oxygen in his sleep or something crazy like that. After diagnosis and treatment he is back to himself almost immediatly!
Here’s hoping the best for you and results and answers SOON! Glad you are fighting for answers and valuing yourself enough to keep pushing!
Sleep apnea does seem to be less “iffy” so it would be good to rule that out, but if you feel bad, I agree something is still wrong. Could always be a food reaction (gluten, wheat, etc.) but could be thyroid too! It’s so frustrating with so many ifs!
I had the same issues, and the same results. Then my GP ordered deeper tests and my reverse T3 came back high, which is then subtracted from your T3 number, which put me well below the normal range. I started medication a few days ago. Maybe ask for more thorough tests? Or get in to an endocrinologist, if you can (none would see me without a referral, even though my insurance is quite kosher with that). And please keep us posted!