Why Is My TSH Not Going Down?

[stolpioni]

Hi,

About 1,5 year ago I had a TSH of 5.5 and was diagnosed with hypothyroidism.
I then went on Levothyroxine (75mg) and after about 6 months my TSH was down to about 1.5.
However, when I tested myself about 2 months back my T4 was 28 (ref range: 12 - 21) and T3 was
in the upper limit.

Since then, I lowered my dose of Levothyroxine to 25mg's and just tested myself again.
Now my T4 is down to 22.5 but my TSH has risen to 2.0.

So, this means my free T4/T3 levels are maxed out (at the top of the ref ranges) but my TSH is still
too high (I want it under 1.0).

What do I do now?

[goolarra]

Tradition.  Doctors were taught in med school that TSH is the gold standard in thyroid testing.  They teach the new generation of doctors, and so it goes.  For so many of us, TSH is virtually useless.  In most people, TSH does accurately reflect FT3 and FT4 levels.  So, in an individual without symptoms, it can be a useful screening test.  However, if hypo symptoms are present, then you absolutely have to ascertain that TSH is accurately reflecting thyroid hormone levels.  There are any number of conditions in which TSH would have your doctor believe you are hypo when hyper or vice versa.  

Another condition for you to consider would be thyroid hormone resistance (THR).  If your FT3 and FT4 have to be higher than range to keep hypo symptoms at bay, it could be because your cells are resistant.

You can google thyroid hormone resistance.  I thought this was a decent nutshell:

http://www.yourhormones.info/endocrine_conditions/resistance_to_thyroid_hormone.aspx

Some people with THR have to have FT3 and FT4 levels many times the upper limit of the range before they are relieved of hypo symptoms.  Of course, severity varies.  

[stolpioni]

Ok, interesting. But how come they even test for TSH if it makes no difference?

I definitely feel like I'm getting hypothyroid. Have barely eaten anything the last week but gaining weight regardless, especially on my stomach. My physique is falling apart. Even if I work out hard in the gym, I make no progress. My body composition just gets worse and worse...(Well, this is how it started out. Then on Levothyroxine those symptoms started getting better. But now once I lowered my dose these symptoms are coming back more and more).

[goolarra]

You are not hypo according to your FT4 and FT3.  Both are close to or above range, which indicates hyper.  We are trying to figure out why, despite these high levels, your TSH is still relatively high.  TSH causes no symptoms.  It's nothing but a messenger from your pituitary to your thyroid to tell it to produce more thyroid hormone.  Because it's a pituitary hormone, it's subject to all kinds of influences in the hypothalamus/pituitary/thyroid feedback cycle.  It's FT4 and FT3 that determine thyroid status.  It's only when TSH accurately reflects FT3 and FT4 levels that it's at all useful.  Your TSH doesn't seem to be doing that since with FT3 and FT4 levels so high, we would expect TSH to be non-existent.

I don't feel that currently low LH and mid-range FSH necessarily preclude hyperpit.  When something goes awry, it doesn't usually do it on a nice, even downward slope.  It has a tendency to do it in fits and starts.  T has been all over the place, so it's reasonable to assume LH and/or FSH might have been part of the cause of that, even though they are currently both low/normal.

If I had to choose which to keep in check, I'd keep FT4 in check and ignore TSH, not the other way around.  That's provided, of course, that you can keep FT4 in range and not have either hypo or hyper symptoms.  In fact, I have had to choose.  I have pituitary resistance to thyroid hormone (PRTH), and my TSH hovers around 20.0 all the time.  My FT4 is in range, I have no symptoms, so we just ignore my TSH.  

You don't have any hyper symptoms with your FT4 in the 26-30 range?        

[stolpioni]

Thanks for the suggestion. However, I have low LH (almost at the bottom of the ref range) and mid-range FSH. Also it says that hyperpituitarism causes hyperthyroidism and not hypo?

Sorry about the TRAG/TRAK-thing, that was meant for something else.

I tested my TSH yesterday again, and it's at 2.4 now. So in it's going up even more.

Would it be safe for me to cruise with a T4 at around 26-30 (ref range 12-22) if that's the only way to keep my TSH in check?

[goolarra]

Hyperpituitarism is a possibility:

https://my.clevelandclinic.org/health/diseases_conditions/hic-Overactive-Pituitary-Gland-Hyperpituitarism

You can see that prolactin, FSH and LH (which stimulate the production of reproductive hormones), ACTH (which stimulates the production of cortisol) and TSH (which stimulates the production of thyroid hormones) all come from the posterior lobe.  That would seem to be a red flag.  

MRI to check for adenomas would, I imagine, be one of the first tests.

I'm sorry; I'm not following:

"Actually, it was called "TRAK" or "TRAG" (or both)."

[stolpioni]

Actually, it was called "TRAK" or "TRAG" (or both).

[stolpioni]

Hi goolarra, no I have not considered that. What could the potential issues be there and what tests should I do?

[stolpioni]

Cortisol test was done first thing in the morning (7 or 8 am, together with Testosterone test). But maybe my TSH is fine, I dont know. I though optimal was around 0.5?

[goolarra]

With prolactin high, testosterone all over the place, cortisol high and TSH a bit on the high side (relative to your high FT3 and FT4 levels), have you considered a pituitary issue?  

[gimel]

I would not say that your current TSH is high.  TSH is a very poor indicator of thyroid status when taking thyroid med especially.  I am not sure about the cortisol.  What time of day was the test done?  

[stolpioni]

Hi gimel,

Thanks. The story is correct, aside from the fact that I quit SSRI about 6 months BEFORE I tested my thyroid for the first time. At that time my TSH was 5.5.

But yeah, it's very possible that SSRI caused everything...but even if it did, the thyroid has not reverted back as I still have:

- High Cortisol
- High Prolactin
- High TSH

My symptoms is that I used to have a really hard time gaining weight. I was naturally slim. I also very easily built muscle in the gym. Now I've been training like I've never done before in my life with nothing to show for it. And I have troulbe not GAINING weight. My whole body just feels different to what it used to. And my hair has not grown back either. But I will test ferritin for this.

[gimel]

So there are symptoms of anxiety and also CFS also.  

Just trying to put this convoluted story together.  Please correct whatever is wrong here.

So originally you seem to have been diagnosed as having anxiety.  Your were started on SSRI med.  Weight gain and hair loss showed up.  Then sometime after that your TSH tested at 5.5, with FT4 and FT3 at mid-range it is believed.  Diagnosed as hypo and started on thyroid med, which peaked at a dose of 75 mpg of T4.  Then 6 months later you stopped SSRI med and a test of TSH showed it at 1.5.  Two months ago your FT4 was 28 (12-21) and FT3 at upper limit.  Dose reduced to 25 mpg of T4 and current test was TSH 2.0, FT4 22.5.

I can't say for certain but I have the general impression that SSRI meds can adversely affect thyroid hormone effects.  It is possible that you had no actual thyroid system problem.  Would the SSRI med also affect Testosterone level?  I don't know.  What actual symptoms ado you have now?  

[stolpioni]

Anxiety. This is managed by SAM-e and B12 now. I believe I have a methylation issue (which caused me CFS).

Quit SSRI over a year ago.

[gimel]

And you were put on SSRI for what reason?

[stolpioni]

Weight gain and symptoms (hair falling out etc) started before I was diagnosed. About 3 months into my SSRI use.

[gimel]

Answer to question about weight?

[stolpioni]

I don't remember, but believe they were somewhere in mid-range. T4 perhaps 15.

[gimel]

What were your FT4 and FT3 when originally diagnosed?  Did you gain the weight before starting on thyroid med or when?

[stolpioni]

Ok, so how come my testosterone levels more than doubled after I started with Levothyroxine if there was no thyroid issue?

I forgot to say that I also gained about 20 pounds of fat in about 6 months without eating more food than usual.

[gimel]

With no hypo symptoms, I doubt that you should have been diagnosed as hypothyroid, even with a TSH of 5.5, as long as your Free T4 and Free T3 were also adequate.  It is not unusual for people to have an elevated TSH with no other related issues.  I think this is confirmed by your current  FT4 and FT3 levels being at high end of range with you only taking a small dose of T4 med.  

I think that for the hair loss you need to test for ferritin, since it greatly affects your hair.  Ferritin should be about 70.  Also would be good to test for Vitamin D.  

You have evidenced nothing that points to a real thyroid issue.  I suggest that you should get your doctor to stop the thyroid med, ignore the TSH level unless you have hypo symptoms, and investigate your other issues.  

[stolpioni]

Hi gimel,

My symptoms were mainly low testosterone:

Total T: 320 (ref range 300 - 900)
Free T: 8 (ref range 9 - 30)

My hair was falling out (I lost like 30% of my hair) and so on.

I then tested my free and total testosterone after a few months on Levothyroxine and my Total was up to 690 and Free was up to 19.

Now I feel like I'm getting symptoms again from low testosterone (like lower confidence etc), although I haven't tested.

Oh, my Prolactin is at 330 (ref range 80 - 320), this one has been high all along (was over 400 before I started supplementing with Vitamin B6).

Cortisol is also quite high = 20 (ref range 4 - 19).

Other than those everything is within range and has been all along.

[gimel]

TSH is a pituitary hormone that is affected by so many things that at best it is only an indicator to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones, Free T4 and Free T3.


What symptoms did you have when originally diagnosed as hypo?  Were your Free T4 and Free T3 tested then?  If so, please post those results and ranges.