Hypo - Mixed Lab Results + Symptoms

Hi all :)

I was cruising along for a good year and lost almost 20 pounds by watching my diet and exercising. This past summer, I started developing several symptoms for hypo. I've been tested a few times since I was in my early 20's, but never diagnosed. However, when these new symptoms appeared and I went to my new doctor (I moved recently), she had a total blood work up done. That first round of tests flagged me as having a high TSH level:

TSH Reflex (0.450-4.500 uIU/mL range) ---> my level was 4.940
T4 Free (0.82-1.77 ng/dL) ---> 0.99
T3 Free (2.0-4.4 pg/mL) ---> 2.7

My symptoms were a swollen, scalloped tongue, fatigue, being cold all the time and my weight loss basically came to a halt.

My doctor had me wait another month and test again, with results coming back "normal". I didn't ask for a copy of the results, and just went back to normal life with the symptoms.

A few months ago, I started to notice my hair was thinning up in the crown area. I have super-thick hair, so when I started to see scalp, I knew something was up. I went back in early January, and my doc said she wanted to run all the tests again, and also have an ultrasound of my thyroid done.

The ultrasound showed some "nodules", but they said they weren't anything to worry about or investigate further. My 3rd round of test results they said were "normal" again, and here's what they were:

TSH Reflex (0.450-4.500 uIU/mL range) ---> my level was 3.760 this time
T4 Free (0.82-1.77 ng/dL) ---> 1.09
T3 Free (2.0-4.4 pg/mL) ---> 2.8

My swollen/scalloped tongue I've had since June, and some days it's worse than others, but it still hasn't gone away. I still have cold feet and fingers and often find myself covered up more than normal (and I used to be hot all the time). And I have to work super-hard to get the scale to move. Lastly, I;ve had another surge of facial hair growth. When setting myself up once again with some laser hair removal treatments, they asked if I was hypo or had any other problems like PCOS. I didn't realize until then that while hair loss on your head is a symptom of hypo, so is facial hair *growth*.

The doc had her nurse call and tell me everything was "normal" and asked if I wanted a referral to a dermatologist for my "alopecia" (hair loss). I said no thanks. I'm not convinced that the thinning hair is related to anything other than thyroid.

Based on my lab results and your experiences, does anyone have advice for me? Do I make myself an appointment with an endocrinologist? Anyone else have fluctuating levels that took them in and out of normal ranges without medication?

Thanks for any advice in advance :)



  • pen2u
    pen2u Posts: 224 Member
    So sorry to hear you're going through this. Some doctors & endos do not go by symptoms, just numbers. I hope you can find a really good endo who listens to your concerns. There is information out there but a lot of misinformation as well. The book I find most helpful is:


    I also got some info from: www.wilsonstemperaturesyndrome.com

    Good luck!
  • islandmonkey
    islandmonkey Posts: 546 Member
    First and foremost, your lab has the incorrect range for TSH. In 2002 the upper limit was changed to 3.0, with many educated thyroid doctors arguing for 2.5 (or even 2.0) as the upper limit.

    The problem with the test your doctor is ordering - the TSH reflex - is that if your TSH is ever below what THEY say is the upper limit (4.5), then they won't even test your free T4 and will say your thyroid is "normal". Since TSH is a pituitary hormone and not a thyroid one, you ALWAYS want the free T3 and free T4 to be tested. Personally, I'd feel really hypo with a TSH of 3.0 -- in someone with existing thyroid issues a TSH of 3.0 is no longer normal.

    You have a high TSH, crazy low free T3, and are very symptomatic. You ARE hypothyroid, and should be on meds already. You should be aiming for a free T3 at least above mid-range.

    Nodules: I...can't even believe your doctor said not to worry about them, after only checking with an ultrasound. Most nodules are indeed nothing to worry about, but protocol is to do a fine needle aspiration (biopsy) to confirm.

    It's quite possible that the nodules are the source of your hypothyroid, so I would get tested for anti-TPO antibodies. This will let you know if you're dealing with Hashimoto's, an autoimmune form of hypothyroid. If that's the case there are things you can do to help calm your immune system down, and taking the thyroid meds will help with that. (anti-TPO antibodies attack your thyroid, damage it, and cause you to go hypo)

    I would honestly find a new doctor. Try an endo, but be aware that many/most specialize in diabetes so may not be very knowledgable about thyroids. Keep searching until you find someone who listens.

    It also looks like your body is struggling a bit to convert the T4 into T3 -- there are many vitamins and minerals involved in this process, so I'd recommend getting the following tested: Vit D, Vit B12, iron (and ferritin), selenium, and zinc. Most people are woefully deficient in Vit D and it's required for the T3 to act on your cells. For all of these you want OPTIMAL levels and not just "within normal range". Ex: Vit D minimum range is 30, optimal is 60-80. I take 4000 IUs daily to get my Vit D up!
  • wisconsinboogie
    wisconsinboogie Posts: 127 Member
    Get a different doc.....you need synthroid!!
  • sharonmunday90
    sharonmunday90 Posts: 129 Member
    Are you in uk?

    If you are "normal" is 4. But they dont usually prescribe until 10 or more. i was diagnosed 20 years ago and my tsh was 12.
  • Thank you soooo much for the reply! I will indeed find another doctor or try an endo. I was hoping someone who's suffered from this would have some insight, and I got exactly what I hoped for.

    Armed with the information I have, I'm going to do some more research into area doctors and make another appointment. I will update this thread as I go.

    Again, thanks for taking the time to read my post and respond with such great feedback!
  • islandmonkey
    islandmonkey Posts: 546 Member
    Good luck!! It can be hard to find a really good thyroid doctor, but please keep searching.
  • Just got back from my appointment with an endo. He said that I was in the "debatable" range and gave me the option as to whether or not to try meds. I opted in.

    Started me at 25MCG's for 2 weeks. Then bumping me up to 50MCG's for another 6 weeks, with a lab appointment scheduled at 8 weeks.

    Also gave me a kit to take home for a saliva test for cortisol.

    Any thoughts on his plan of action?

  • islandmonkey
    islandmonkey Posts: 546 Member
    I like that he started you on a low dose just to make sure, and that seems reasonable to retest 6 weeks after starting the higher dose.

    I would probably track your symptoms during that time so you can see any patterns.
  • Thanks for the response!
    I'm definitely tracking everything from here on out. Maybe a journal of sorts...
  • ggeise14
    ggeise14 Posts: 386 Member
    Bump for later
  • pen2u
    pen2u Posts: 224 Member
    Just got back from my appointment with an endo. He said that I was in the "debatable" range and gave me the option as to whether or not to try meds. I opted in.

    Started me at 25MCG's for 2 weeks. Then bumping me up to 50MCG's for another 6 weeks, with a lab appointment scheduled at 8 weeks.

    Also gave me a kit to take home for a saliva test for cortisol.

    Any thoughts on his plan of action?


    It sounds as if you've found a winner in your endo. Love that he is also concerned about cortisol. Good luck!
  • Cindym82
    Cindym82 Posts: 1,245 Member
    OP: make an appointment

    Last year my tsh was 2.24 and he said I'm within range but my vit d was low so he put me on that so I went back this week for my yearly check up and this is my test results

    TSH 2.120
    Free T4 1.18
    Total T3 109

    Now he tells me I'm perfectly fine.....well I don't feel perfectly fine and I'm lost on what I should do, should I search out another endo, primary, or a different doc? Should I just live with it and wait for my thyroid to take a total ****? IDK what to do :(