Help with endo advice - tells me to get off meds

[atalanta934]

Hi everyone,

I could really use some help and support right now.  I finally saw an endo after waiting for months and she proceeded to tell me that I don't have a thyroid problem at all, that the first results (with T3 below range) were just unreliable, that I'm on way too much desiccated thyroid, and I should get off of it completely (albeit gradually).  Not the answers I was looking for.

Background: finally found a doc to test T3 and T4 May 2015.  TSH was normal but T3 was below the range and T4 was low.  I have slowly bumped up the desiccated thyroid to 180 mg.  The tough thing is that I am still feeling very fatigued, still brain fog, still low temperatures.  So I saw this endocrinologist who told me that I'm on way too much hormone that I don't need and that I need to cut my food intake while I taper off because otherwise I will gain weight (which totally scares me by the way).  It's not like I've changed my diet at all since I started all of this.

I don't know what to do and am beyond frustrated. Can't stop crying.  I don't want to taper off if I actually need the hormone but I don't know if it's working because I am still feeling so tired and temps are so low.  I also am freaked out because I don't want to have seriously ruined my metabolism.  Does the thyroid/pituitary come back after so much supplementation?

(I don't have my vitamin D, B, and iron results here but I've been tested and have been supplementing)

I would really appreciate any advice/suggestions/thoughts.  I am lost and beyond frustrated.  Thank you.

The latest results on 180 mg

TSH: less than 0.01 (range is 0.2 -4)
T3: 6.1   (3.5 - 6.5)
T4: 18.6 (10.0 -25.0 pmol/L)

All other results from the beginning...



My initial labs were as follows: (tested in May 2015)
TSH: 1.21 (range is 0.20-4)
Free T4 is 11.3.  (10.0-25.0 pmol/L)
Free T3 is 3.3.  (3.5 - 6.5)
Thyroid Peroxidase antibody is 13 (0-34)

Started on ERFA thyroid.  15 mg for one week, then took 30 mg for three weeks (that's half a grain I believe).  This blood work was done after the three weeks on 30 mg.

Results:  (July 2015)

TSH: 1.1 (range is 0.20-4)
Free T4 is 11.9.  (10.0-25.0 pmol/L)
Free T3 is 3.5.  (3.5 - 6.5)

I missed the chance to test again for a bit got tested (Sept. 25, 2015).  

New results at 75 mg

TSH 0.05 (0.20-4)
Free T4 15.7 (10-25 pmol/L)
Free T3: 4.6 (3.5-6.5)

October 25, 2015:

DHEA-S 2.4 (1.5-13.0 umol/L)

Nov. 25, 2015 results at 120 mg

- Free T4 20.9 (10.0 - 25.0 pmol/L)
- TSH <0.01  (0.20 - 4.00 mIU/L_
- Free T3 6.9  (3.5 - 6.5 pmol/L)


January 6 results (on 120 erfa)

Ferritin 130 13 - 375 ug/L
Free T3 6.0 3.5 - 6.5 pmol/L
Free T4 18.8 10.0 - 25.0 pmol/L
TSH 0.01 (L) 0.20 - 4.00 mIU/L


March 2, 2016 (120 mg)

TSH: 0.01 (range is 0.20-4)
Free T4 is 17.3.  (10.0-25.0 pmol/L)
Free T3 is 5.0.  (3.5 - 6.5)

CORTISOL AM 454 (200 - 690 nmol/L)
Cortisol PM 212 ((200 - 690 nmol/L)

[Super_sally888]

Hi another question,

for all the testing done; did you take the thyroid meds on the morning before you did the blood tests?  

You have to wait until after the blood test to take your daily meds.  If you take the meds before the blood test your levels will be artificially high.

[atalanta934]

I always take my meds after the blood draw.  

[Barb135]

Are your current T3 and T4, Free or Total T3 and T4?  If the lab report doesn't say Free or FT3/FT4, then the test are for Total T3/Total T4 and they don't give the same information as the Free's do...

It's very likely that you need some hormone, but yours are higher than we'd, typically, recommend.  Most of us find that we fell best with FT4 about mid range and FT3 in the upper half to upper third of the range.  Your FT4 is at 57% of its range, which is over the recommended 50% and your FT3 is at 87% of its range... It won't take much to flip you to the hyper side.  

Just off hand, I'd say the endo who told you to get off the thyroid med, probably reacted to the very low TSH, which really  means nothing; but it can cause doctors to go off half cocked in a heart beat... I deal with it all the time, because my TSH stays at < 0.01 or 0.01, though my FT levels are not nearly as high as yours.

With labs like that, I'd say your tiredness is not caused by lack of thyroid hormones.  What vitamin B have you tested and are you supplementing?  If you've had, specifically, vitamin B12 tested, and can post that result, that would be helpful.  I find that I have to keep my B12 level at/near the top of its range in order to keep symptoms of deficiency at bay... it just so happens that fatigue is one of the main symptoms of B12 deficiency.  

I also notice that your DHEA-S level was quite low in the range; that can also cause some tiredness, as well.  

Your Ferritin is quite high, which can indicate inflammation in the body.  Inflammation can cause us to feel less energetic and "awake" than we normally would.

I notice that you had a Thyroid Peroxidase Antibody test, which was negative, but I don't see a Thyroglobulin Antibody (TgAb) test.  TgAb is another test that can confirm Hashimoto's; without it, Hashi's can't be completely ruled out; however, looking at your past labs, it looks more like you have Central hypothyroidism, instead of autoimmune hypo.  

Central hypothyroidism is when the thyroid actually works fine, but the pituitary gland isn't producing enough TSH to stimulate the thyroid.  Your original low TSH and low FT3/FT4 would bear this out.  Central hypothyroidism is a problem with the pituitary/hypothalamus axis, not the thyroid, but it's still hypothyroidism and requires replacement hormones, anyway. Many doctors miss Central hypothyroidism, because all they're looking at is TSH and it's, typically, pristine.

Before it's all over, you're probably going to have to find a different endocrinologist, unless you can convince this one to consider Central hypothyroidism.  

[atalanta934]

Barb,
Thank you so much.  This is so helpful. Yes, it was a Free T3 and Free T4.
My questions now are: 1) how hard is it to taper off the desiccated thyroid?  Will there be bad side effects as I drop the dosage? I'm worried I've caused damage to my thyroid by taking too much. You're right, the endocrinologist was really only looking at my TSH.  She wants me to taper off completely but I agree with you that I need some thyroid meds. Should I just stop when my numbers are ideal, as you have mentioned?

2) For B12, I don't have results.  I have been supplementing with a really good B complex but maybe that isn't enough.  Would you wait until the thyroid was dropped before starting B12 and how much would you supplement?

3) Not sure where the DHEA should fit in there. I know my numbers are low.  I can't access DHEA supplements in Canada where I live but I visit the States regularly.  It's hard to know where to start.  

Finally, I'm not sure what to tell my doctor and the endo.  I feel like I have to fight to stay on some hormone even if I accidentally took too much.  I just kept waiting to feel better.

I am so very grateful for your help.  I'm feeling very lost and frustrated right now and it really makes a difference to be able to ask questions and get some advice.