T Nation

Years on T4 - Misdiagnosed? Still Searching


#1

I’m a 25 year old male and have been on levothyroxine for about 4 year now. Sound ridiculous, right? I’ve always been around 155-160, smaller frame and always been pretty damn lean.
What caused me to be on T4 replacement?
Prior to going on it, I was having issues with an antidepressant causing excessive sleeping issues and possible brain fog/constipation, etc. I’ve had multi tests done as far as colonoscopy, endoscopy and upper and lower GI - no GI issues that were causing my constipation or fatigue at the time. I ended up coming off the medication (cymbalta) and had an eating disorder (OCD with body image issues) and lost significant amount of weight (remember, I’m already very lean as it is and what i was losing was just more muscle mass…whatever I had lol) got down to 130 and realized what i was doing to myself - got a psychotherapist to help along with friends and family support. Continued to get blood work for check ups and the doctors had found my test levels at 18ng/dl (non existent) and my thyroid was in a subclinical hypo level based on the above first few tests of a high"er" TSH,but my T4 was still mid range for the labs. They started me on test cypoionate shots of 250mg every 14 days (lol) this is when i was started on 50mcg of T4/daily and was referred to an endocrinologist. after about 6 treatment shots with test cyp. - levels were around 1300 ng/dl and was taken off/stopped the shots, yet stayed on T4.
began to recover and gain weight back and checked test levels periodically to make sure they were rising without the help of the shots. they were then checked and were 350then 460 - 2 weeks apart and haven’t had them checked sense. ---- plan to get those very soon at my next end appointment as well as an array of others while I’m getting my blood sucked outta me.

Eventually once i hit 165 (highest I’ve ever been) i was upped to 75mcg of levothyroxine but none of this helped my constipation and fatigue still.

I’ve always had a very strict diet with low sodium/no salt added to anything. so any salt i was getting was from whatever was in the products i was consuming. So definitely assuming i was iodine deficient even with a multi - sport vitamin that had 100% of iodine supplied in it.

As of being upped with the T4 and having no differences aside from my t4 going down a little and realizing my RT3 was slightly higher (1 point above the end high range). My doctor said that could’ve been due to an infection or the over activity of my immune system from psoriasis flare up.

Gonna shoot in the fact that january of this year (2017) i had a sebaceous cyst on my forehead that was aggressively treated (overly aggressive for what it was) with a shot of dexamethasone, antibiotic shot (didn’t specify) and oral Medrol pal of 6 days (60mg, 50mg, 40,30,20,10) and oral doxycycline. after all of this I’ve had horrible breakouts on my back and shoulders that took months to go away and now i have extreme hyper pigmentation from the lesions.

Anyways, I’m hoping that this T4 replacement was unneeded and my test results were slightly skewed originally (like my test was) due to lifestyle choices and i wish i got off of it earlier like i did with the test shots. I’m wondering if 4 years is too long to ever come back and fully recover my thyroid production or not. I’ve had an ultra sound of my thyroid and it showed like 2 benign small nodules (this is while i was on levo so i have nothing to compare to) and i have had an MRI of my pituitary gland and that was “outstanding and perfect” noted the doc.

Last thing about any bloodwork ill note is that my bilirubin has always been pretty high with no reason why. the high end of the range is 1.2 and mines always been 3.0 - 3.2ish.

Let me know if theres anything else i should add, and ill probably update when i go to Lowcountry male and my endocrinologist in august - with all labs too.

Thanks


Bad Endo and a Good Doc All in the Same Day, Charleston SC
#2

You will need to provide lab ranges for the labs you posted.

Read the thyroid basics sticky and post your oral body temperatures.

Post your history of using iodized salt and/or vitamins that list iodine >=150mcg.
Any selenium in your vitamins?

rT3 can be elevated by stress or starvation diets.

If you have a rT3 problem, taking more T4 creates more T4–>rT3.

Please read the stickies found here: About the T Replacement Category

  • advice for new guys - need more info about you
  • things that damage your hormones
  • protocol for injections
  • finding a TRT doc

Evaluate your overall thyroid function by checking oral body temperatures as per the thyroid basics sticky. Thyroid hormone fT3 is what gets the job done and it regulates mitochondrial activity, the source of ATP which is the universal currency of cellular energy. This is part of the body’s temperature control loop. This can get messed up if you are iodine deficient. In many countries, you need to be using iodized salt. Other countries add iodine to dairy or bread.

KSman is simply a regular member on this site. Nothing more other than highly active.

I can be a bit abrupt in my replies and recommendations. I have a lot of ground to cover as this forum has become much more active in the last two years. I can’t follow threads that go deep over time. You need to respond to all of my points and requests as soon as possible before you fall off of my radar. The worse problems are guys who ignore issues re thyroid, body temperatures, history of iodized salt. Please do not piss people off saying that lab results are normal, we need lab number and ranges.

The value that you get out of this process and forum depends on your effort and performance. The bulk of your learning is reading/studying the suggested stickies.


#3

Lab ranges:

TSH: 0.358 - 3.74 uIU/mL
T4 Free: 0.76 - 1.46 ng/dL
T3 (total): 71-180 ng/dL (in the chart this is the earlier one that is “101”)
T3 Free: 2.3 - 4.2 pg/mL
Reverse T3: 9.0 - 27.0 ng/dL

TPO Anti: 0 - 34 IU/mL
TGAb: 0.0 - 0.9 IU/mL

Bilirubin, Total: 0.2 - 1.3 mg/dL (mine was 3.0, on separate test results)

Also would like to note that my B12 was super high at one point ( might be completely irrelevant, but a value of 1379 with a Reference Range: 211-946 pg/mL)

Since I’ve read the stickies, my mornings are low 97’s as an average (97.2, 97.6, 97.3, etc) and it usually tops out at 97.9 - 98.2 during the later readings in the day. Haven’t had anything below 97.0.

History of iodized salt-- haven’t used it directly since an early early fresh teenager. i had a very low salt diet as stated, tried to avoid it aside from having splurge meals and what not. recently started taking a multivitamin with 150mcg of iodine in it but I’m also on T4 as it is so this would’ve been a beneficial thing to consistently take in the past. I never usually took multivitamins consistently back then, so i can’t even count it especially not remembering what i was taking.

I’m not on a starvation diet but definitely maintaining on a ~2000kcal diet due to all i can really muster without adding any unwanted weight until my situation is figured out.

hope this helped more and am willing to give out any more information as needed


#4

T4 is not working well when temperatures are low.
rT3 is at high end and your range high end is higher than other lab companies’.

Suspect rT3 is interfering with fT3 and fT3 is a bit below mid-range.

The question is whether you had a thyroid ‘problem’ or iodine deficiency masked by T4 medications.

You will need a vitamin that lists 200mcg selenium to protect your thyroid.

With elevated rT3, more T4 means more T4–>rT3
Then meds should be compounded fT3, try 25mcg or more as you explore and tackle sources of stress - see the thyroid basics sticky for more, note Wilson’s book on adrenal fatigue.

Most docs will be clueless about these issues.


#5

I’ll give that book a read for sure, thanks for the suggestion.

I felt better when I was on 50mcg to be honest, so I’m assuming the 75mcg over time is just more than I need so it’s being converted to RT3…and possibly the T4 is a stressor to my body as it is? Just a thought.
But if some type of stress (mental, medically, physical etc) is causing the RT3 to become elevated, would that mean lowering my stress levels would potentially lower those? Or does my situation still warrant a compounded mix of T4/T3 to feel optimal?

I’ll definitely discuss this with my new doc and endocrinologist, then update the thread.

Brain picking…:
If it was an iodine deficiency and not an actual "thyroid problem, is there hope that i can successfully come off of levothyroxine and have full recovery of my gland to make everything on its own again? (given I give it the minerals needed to support it)

Thanks again for the input, seriously!