Question re: Thyroid Lab tests results--Layman's explanation needed?

I need help from my brethren. As many of you know my history, but I will get those of you who don’t know me up to speed. Graves disease at 13 years old, 2 rounds of radioactive iodine, resulted in hypothyroidism.

Thyroid problems, Rheumatoid Arthritis, Type 2 Diabetes on Father’s side
Osteoarthritis, Genetic (food) Allergies, Type 1 and Type 2 Diabetes on Mother’s side

O.k. so this was the last visit with my endo…she is leaving the medical group. My A1C was 5.9 on Trulicity but I was having really bad stomach problems with it and discontinued it.

But my question is about my thyroid labs.

TSH 0.014 L REF 0.450-4.500 (uIU/mL) HD
F Triiodothyronine (T3), Free 2.6 REF 2.0-4.4 (pg/mL) HD
F T4,Free(Direct) 1.34 REF 0.82-1.77 (ng/dL) HD

The endo said my test result were nothing to worry about, but they have been showing up like this for quite some time. Mind you, I have been a thyroid patient since I was 13 years old. All my previous internists have adjusted my dosages, she has never adjusted my dosage in the 1.5 year I have been going to her–she has me on 150 mcg.

She says if I keep coming to her and if I get any lower, then she _may_adjust it at a later date. My spidey senses are tingling. I’m wondering if this contributing to me being sick as well. My rheumy kind of hinted around about it in my last visit that I need to speak with her about it, which I did but the endo said that it didn’t affect it. And the Trulicity wasn’t the cause either…but the stomach trouble stopped when the Trulicity stopped. I do still have sleeping trouble…still losing weight and drinking water…endo is on my butt about my BGs, but I’m not eating—not hungry.

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I had RAI for Graves about 8 yrs ago and constantly have to change my doses. If your TSH is this off, you probably dont feel well. I would be shaky, have tummy issues and lose weight. It never fails to act that way, and I would be going through the six to eight week time frame to see if a dosage change works. My levothyroxine/Synthroid has gone from 125 down to 88 and now is back to 100. Chances are, I will be having to change again in a few months.
My favorite reference material for Graves comes from Mary Shomon and her books. You can usually Google her name and find her columns online You need to do something, I dont think you should be left alone with that TSH like that. Oh, and I do not have any symtoms of extreme hunger. I pretty much have zero appetite. But my other symptoms reflect hyper T or Hypo depending. Hope you can work it out!

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Thanks Laura_S for the reply. My TSH since I’ve been with her have been extremely low but she hasn’t changed my dosage. My PCP was always changing my dosage as you stated in your post from 125. Same with my previous internists when I was diagnosed up until the present. I have never had a dosage this high before in my life at 150 mcg.

I will make an appointment with my current PCP (mine retired, :frowning:) and ask her to run all the tests (including my diabetes tests again) and try to get me on the right path.

Yes, I feel awful…like something the cat dragged in from the street.

I will check out Mary Shomon’s material as well.

Thanks so much!

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I have Hashimoto’s, but at times have experienced wild swings. Being hyper is worse than being hypo in my opinion. I personally would insist on adjusting my dosage if my TSH was that low and I was experiencing hyper symptoms (usually I am hot all the time, have sleep disruption, and muscle weakness). My concern would be about osteoporosis. I can not afford anymore spontaneous fractures. Running hyper can impact your bones! My mom has Graves. She has permanent eye damage. Again, I would rather be hypo over hyper!

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Cyclinglady—so that’s the reason I have these intense sweating spells—like someone has pour the gatorade bucket over my head after a football game? :confounded:

Also my last period was in March…I’ve always had awful periods, now none and I’m only 48 they shouldn’t have stopped.

My endo said I was going through early menopause or it was stress related, but I was still have all the monthly symptoms but no period.

Yeah, I’m definitely going to ask my PCP to retest me. Good grief…what is this world coming to when you can’t trust your doctor?

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Oh yes, I also have muscle weakness when hyper (very sore). and the skin on my neck feels weird…very smoothy. I can tell by that if I am hyper. It’s horrible.

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Intense sweating (hot flashes) is most likely attributed to menopause, but you can be going through many things at the same time. I had the wild thyroid swings, horrible menopausal symptoms, severe anemia, and was diagnosed with celiac disease. All contributed to my misery. My hyper heat was just hot (not sweating profusely all the time). I would keep asking, “is it hot in here?” I imagine everyone is different. 48 is not to early, especially when dealing with AI issues. Perimenopause started at 40 for me (validated by lab tests). It lasted for 12 long years. Still…I am getting hot flashes. I hear from a reliable source (a bunch of ladies at the gym) that they can last for the rest of your life. :disappointed_relieved:

A nurse once caught me in the middle of a hot flash (sweating and heat that rises from the chest to the head) while taking my temperature. It was 101.4 and he asked if I was ill. 15 minutes later, my temperature was 98.6. He said he was going to have more empathy with his menopausal wife! :laughing:

Wow! Well, my feet are as cool as a block of ice and so are my hands, I am so embarrassed when I have to shake hands with people.

My rheumy’s nurse has actually taken my temp and it’s below normal and they’ve been concerned in the past…and it’s a bear to get a needle in me for infusions, except when during a surge. :joy: I’m ice cold and veins close up, but when I’m flashing, my veins cooperate. I’ll say, “Power Surge!” Too funny!

Yes, I’m now having the leg and thigh cramps…I assumed it was from my fibromyalgia. That’s the problem when you have so many problems–you don’t which is giving you the problem…you know what I mean? :confounded: SMH…

What upsets me the most with the endo is she blew me off when I kept telling her I was having severe diarrhea. Two blood tests in a row showed my TSH low and she still says they aren’t that bad, and kept blaming me…my retired PCP would have changed my meds.

Then she asked to continue to be my doctor. I wonder does she not know what she’s doing or want to torture me? I just don’t know.

That’s a super low TSH number. I’m not sure it can get any lower it is effectively zero already.

Are you having any symptoms that might indicate hyperthyroid? Did you raise this to your doc and get ignored? Has your doc asked you about those symptoms? Your doc should have!

Plagiarizing the Mayo website: Whole body: excess sweating, excessive hunger, fatigue, heat intolerance, or restlessness

Mood: mood swings, nervousness, or panic attack

Heart: abnormal heart rhythm, fast heart rate, or palpitations

Sleep: difficulty falling asleep or insomnia

Menstrual: irregular menstruation or short and light menstruation

Behavioral: hyperactivity or irritability

Eyes: abnormal protrusion of eyes or puffy eyes

Also common: weight loss, diarrhea, hair loss, muscle weakness, tremor, or warm skin

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Tim12,

Thanks for responding. Yes, I did raise this with her on more than one occasion. I thought it was the Trulicity (which is increased). She said the low TSH, which was the same number in the previous lab wasn’t a problem.

She increased my Trulicity to the 1.5 mg and I started having explosive diarrhea. I was already having stomach trouble. I was already have sleep problems. My rheumy also knew and told me to tell my endo again–that my thyroid needed changing and I needed to stop the Trulicity, if I was having problems.

My rheumy was majorly concerned because my infusion (Remicide) is based on weight…I have my infusions monthly and he said I was losing too quickly in his opinion—20 pounds a month. On the other hand my endo says I’m not losing enough–this last appointment she said if I stay with her she wants me to lose another 20 lbs.

I am a heart patient (due to the radioactive iodine) and take heart meds, so the heart palpitations are being controlled with meds, but I do have one out of the blue once in a while.

Some days I can’t seem to concentrate–I passed it off as my diabetes. My BGs are creeping up–again she’s accused me of cheating–which I’m not since I have no appetite, and what I eat just keeps on going through my digestive system. It’s so embarrassing at work to be the bathroom so much, and people know why you are in there. The endo said for me to go to the PCP for that problem, that it’s probably a virus or digestive problem.

Did your doc mention maybe a CAT scan or other diagnostic of your pituitary gland? Or other things regarding you pituitary gland? I think one valid reason why TSH may be essentially at zero but you should continue on your synthroid, is if the pituitary gland isn’t making any TSH at all.

I’m being treated for Graves’ with Tapazole, and I had a similar experience last month, except my TSH was high (6.8) and my free T4 and free T3 were still in range. My doctor decreased my Tapazole dose based on the TSH number. I get my numbers re-checked tomorrow to see how my body has responded to the dose adjustment.

It can definitely be hard to untangle symptoms when you have a lot going on. It sounds to me that your endo is not listening to you or your other doctors…

The previous endo before the current endo did an MRI of my thyroid, but that’s all…and it came back negative. She always aggressively checked my thyroid–but she didn’t have me on as high a dosage. She also didn’t want my BGs to be perfect either…my A1C was at 6.3 and she was o.k. with it since I’m an RA patient and she said that as long as I wasn’t going up o.k.

The current endo wanted my BGs to be less than 100, my A1C to be < 5.8 and for me to lose 100 lbs…mind you the RA meds I take put the weight on me so I could fast for 40 days and still be pudgy–I take prednisone for goodness sake.

When she told me to get the stomach band surgery I told her I’d still be taking my RA meds, and I’d still be fat. My cardiologist agreed–it’s all prednisone weight.

Maybe she thinks fiddling with my thyroid will keep my weight down, my BGs, and A1C. But my BGs are creeping up, which made her mad, yeah, again the prednisone. She doesn’t get it.

But no one has ever checked my pituitary gland ever.

I’m not fundamentally opposed to aggressive bg and other lab targets. Yes it’s hard and yes it feels like they “keep raising the bar” and yes sometimes we’re doing the best we can do.

My docs have always mentioned “well if your TSH came back in the 0.4 ballpark we might think about lowering your synthroid dose”.

But the above reasoning only really works if my pituitary is making TSH.

The 0.014 TSH number you’ve had for a couple consecutive lab tests, that’s below anything I’ve ever heard of. And makes me think there’s some underlying pituitary problem. But I’m not a doc and not an expert in the pituitary gland.

It’s pretty common in hyperthyroidism such as Graves’. Most people with hyperthyroidism will have TSH of <0.05. Mine was <0.02 (the lab didn’t detect any lower than that) when I was diagnosed, and three months later was still very low, even though by that point I was being treated and my other numbers were back in range. Since @Kate25 has a history of Graves’, I think that makes the situation a bit trickier than just thyroid replacement, because you’ve got autoantibodies attacking the TSH receptors involved as well…

A pituitary issue would affect more than just TSH, so it should be fairly easy to do other blood tests to rule that out as an issue.

You mentioned an internest. See an endo for a consult . To help evaluate. Nancy50

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Yes, I have to go to my new PCP in order to get a referral for another endo. This endo is leaving the group I that was attached. Even the PCP that retired was good at taking care of my thyroid.

When I was originally diagnosed at age 13 I saw an internist he treated me very well–adjusted my thyroid meds as needed.

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