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Avatar universal

Is it possible my TSH/T3/T4 levels were normal for me even if not "in range"?

I've been seeing a top endocrinologist for a couple years now. She claims I have Hashimoto's based on my TSH being reliably around a 5, and my T4 being in the acceptable range at around 1. I was fine with this, because I had absolutely no symptoms. I had seen a primary care doctor years ago who put me on Synthroid, Levothyroxine, and Armour for a few months but I went off it because I had horrible symptoms. So with my new endocrinologist I resisted medication and tried every dietary modification - I'm already vegan on an organic diet, I went gluten-free, dabbled with sugar-free and soy-free, avoided uncooked goitrogens like broccoli and peanuts, and I ate seaweed for the iodine since I hate salt... but my level always remained around a 5. I thought maybe a 5 is just normal for me, despite being just outside the "accepted range" doctors go by, but she said no it's not normal for anyone. I started acupuncture, and suddenly my TSH jumped up to a 9 but T4 was still normal. I still didn't have any symptoms, but the doctor convinced me to do a 6 week trial of Levothyroxine at the lowest dose of 25mcg and I agreed just to get her off my back.

I take the Levo first thing upon waking with water and wait 30 minutes to an hour before eating. About a week in, I was hit with the worst sleeplessness - I was tossing and turning, jumpy, and just couldn't sleep. This led to extreme daytime fatigue and bouts of narcolepsy where I found myself falling asleep in waiting rooms or taking naps at home. I feel like a zombie, no energy and no desire to do anything because I just can't move or function. My joints began to just hurt and ache for no good reason. And the worst... my beautiful, long thick hair began falling out in huge clumps. I literally filled a trashcan with my own hair, and I cried.

I've been trying to call my endo for the last 3 weeks but she's not returning my calls, and I don't know what to do. Is this possibly normal? How long do I give this horrible medication to "fix" me? I called my primary and she put me on vitamin D because mine is low, but it's always been low every since I can remember and even after multiple courses of 50,000iu doses it just refuses to be in range. I'm just so upset and frustrated, and I feel like the doctor doesn't respect my body or my tolerances and wants to lump me into the "acceptable range" baloney where I don't feel I belong.
2 Responses
Avatar universal
We all have our individual "normal" range.  Sometimes that's within population reference ranges, sometimes not.  If you have no symptoms, you have no symptoms.  Why treat something that isn't bothering you?

What exactly was your FT4, and please include the reference range from your own lab report.  Ranges vary lab to lab.

Avatar universal
The TSH is produced by pituitary gland in response to thyroid hormone level in blood (sort of simplified explanation). What is the level of your TPO antibodies??
Just having high TSH is not enough to be diagnosed with Hashimoto's
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