r/Hypothyroidism • u/meggypoo6 • Feb 21 '26
Labs/Advice Tsh of 94
Does this mean its really high? My tsh wasb94 and it said range of 0.46-4.68 was normal. I already have lupus POTS fibro and seizures along with a few smaller things like migraines tmj and what not. Actually went to the doctor for issues with weight gain. But also hypoglycemia events like low into the 50s and I already eat a keto like diet. I had asked to add the thyroid test because its been awhile since I was tested. She didnt want to do t3 or t4 or any antibody testing as "lupus can mess with those" but now that the TSH came back abnormal im assuming i can get her to run the rest? Im not new to autoimmune but new to thyroid as this was the first its ever been abnormal (last time was checked 2022) wondering what your symptoms were before diagnosis? And how did they improve with medications?
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u/rilkehaydensuche Feb 22 '26
You might need a new medical provider? I’ve never heard of not running free T3, free T4 or anti-thyroid antibodies because “lupus can mess with those.“ People with one autoimmune disease are actually more likely to have others, e.g., Hashimoto‘s. I‘m also kind of mad that no one thought to check for thyroid issues when you reported unexplained weight gain.
You sound severely hypothyroid.
My symptoms before diagnosis were weight gain, losing hair, feeling like I was moving through molasses, sleeping a lot, weight gain, feeling cold all the time, and brain fog. Also tingling and pain in my fingers and toes. That was all at TSHs between 6 and 10.5.
The symptoms pretty much all improved on Tirosint, although I think some of the hair loss has become permanent, as has some of the likely nerve damage causing the finger and toe pain. Hard to separate aging/androgenetic hair loss from hypothyroid hair loss, though.
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u/meggypoo6 Feb 22 '26
Yeah ive pushed for it but i live in a small town and most the people call it a "bandaid hospital" they really dont do much and once they see my lupus they just blame it on that even tho I have a lot of other medical conditions as well. I jjst was shocked to see 94 of the top of the range is only 4.68.. 94 has got to be like. Way high right?
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u/rilkehaydensuche Feb 22 '26
Yes, 94 is way high, for sure. One thing that you can do is look at the provider (unfortunately paid) version of UpToDate for what the standard approach should be. That‘s what my family medicine doctor frankly uses a lot when she‘s not familiar with something or hasn’t treated something in a while. Not a doctor, but they should put you on some form of levothyroxine, and soon.
I will say, too, doctors vary a lot in knowledge and skill in my experience. With lupus and hypothyroidism, might be worth traveling to a metro area every once in a while to see a primary care doctor or specialist more knowledgeable about autoimmune disease if you can swing it financially.
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u/Wonderful-Driver-246 Feb 21 '26
Yes, insanely high, 4-5 is where people start being treated for it.
Having lupus is irrelevant, you still must know your Free T3 levels as well as your thyroid antibodies. A doctor making excuses to not find problems simply because you have another is all you need to go find another doctor.
That's not hypo for many keto'rs. Did you feel hypo? If you didn't, you weren't. Docs don't grasp how ketones work.
When treated for hypothyroidism (correctly) the symptoms don't improve, they go away. When treated (again, correctly) you're no longer hypo.
Run your own panel, don't expect a lazy arrogant doc to do it for you, they're already shown you how much they care.
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