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Avatar universal

Possible Pit Issue

I have been having a hard time getting diagnosed. My Endo is very traditional and tends to look at normal ranges only.

My current Thyroid tests are as follows:

TSH 0.564 ug/dL [.45 - 4.5]
T4 0.78 ng/dL [.82 - 1.77]
T3  3.0 pg/mL [2.0 - 4.4]

My Cortisol Urine is

Cortisol,Urine  5 - no reference
Cortisol, Urine 24 hrs - 15 [10 - 55]

ACTH Stim Test

Cortisol 1 AM (Base) -  5.9 [6.2 - 19.4] Low
Cortisol 2 30 Min - 30.3
Cortisol 3 60 Min 33.1
Cortisol 4 90 Min 37.5

ACTH Serum Test 13.5 [9.0 - 64.0]

I am exhausted, I have been off thyroid medicine for over 6 weeks now....I have extensive (at least 5)  thyroid nodes which are exhibiting normal 6 hr iodine uptake (I think the score was about 10% after 6 hours).

I am suspecting I have a pituitary issue with low TSH and ACTH and that both are making secondary thryoid and adrenal problems....but now the Dr wants to put me on a low dosage prednisone and see what happens and ignore the thyroid as my TSH is in "normal" ranges. I have been bedridden 80% of the day and sleeping a lot.

My prolactin was normal so he said no pit tumor or anything.


I am about to lose my job and my sanity if something is not figured out. I have fatigue, brittle nails, 13 lb weight gain in the 6 weeks off thryoid meds, constipation, sinus trouble, headaches, foggy head.

I feel like I need to find another Dr...this will make number 8 is 2 years.

Kelly

9 Responses
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Avatar universal
Well, at least they gave you T3 and T4...but has the doctor tested any other hormones? Plus Iron, Vitamin D, SED, ANA etc? It just does not seem like the doctor has tested much of the pituitary or many of the other hormones
Helpful - 0
Avatar universal
My T4 only rose to 0.88 even on 120 mcg of Armour...TSH went to near zero and T3 were on the upper end. I am desperate for anwers. My life has come to a crawl (which cannot last much longer)
Helpful - 0
Avatar universal
Treating the thryoid before the last 7 weeks has only gotten rid of the extreme tiredness...I have not been optimal for over 2 years now...I know there is something else wrong as well...

low energy, headaches, constipation, inability to lose weight on a low carb diet and walking (when I had energy) has been an issue for 2 years now.

Helpful - 0
Avatar universal
I looked up the exact scenarios it seems to be Central Hypothryoidism and secondary adrenal insufficiency....the ACTH and TSH are both low.

The weight gain could be thryoid (gained 13 pounds in 7 weeks off medication)...my Dr beleives that because the TSH is in the 'normal' range we should not treat thyroid...

I am sleeping over 15 hours every 24 hr period and have no real engergy periods. My life is degrading and working to find another Dr....problem...the next appt for a pit/hypothalamus specialist is May 11th.

Helpful - 0
Avatar universal
The Free T3 and Free T4 should be at the higher ends of the ranges - your T4 was off - your doc should treat your thyroid at a minimum.

Low cortisol has low blood pressure, loss of weight etc. Your symptoms are more consistent with high cortisol - that is what is baffling. You could be cyclical or the lab mishandled your samples (let them get warn - as in the urine jug was warm - did you keep it cold the entire time? that can degrade any hormones in it).

Helpful - 0
Avatar universal
Blood pressure is high....has never been before but is now...also swelling is awful. I can start out ok in the AM and then high swelling in fingers and feet in a few hours. This morning I woke up swollen.

My 24 hr cortisol was really low though at 15. would that indicate low for 24 hours?

They tested thyroid antibodies and they were negative.

I think low CO2 is low due to low metabolism.

The T3 and T4 tests (results above) say Free by them.



Helpful - 0
Avatar universal
Uh, no - labcorp does not know how to do ACTH - I am constantly after them to do my test correctly. I even get degraded samples. Ugh.

So you have only tested cortisol in the morning? Do me a favor - look up cyclical Cushing's. If they have not tested at any other times - they don't know about the diurnal rhythm so you could be high at other times. Cortisol can vary widely. For instance, I was low all day, high all night so my UFCs were normal as the average was ok! But I could not sleep at all and I was super tired.

How is your blood pressure - high or low?

Have they tested antibodies? free T3, Free T4?

Co2 being a little low - mine is always like that...
Helpful - 0
Avatar universal
My Cortisol has been low in about 5 different tests over the past month. My 24 hour urine showed very low Cortisol output (24 hour urine - 15 [10 - 55 range] and three blood tests have shown very low cortisol (ranging from 5.9 - 6.2 for AM Cortisol).

I can only assume the ACTH was correct as I went directly to the LabCorp lab office itself, not the Dr office. It would make sense that the pit "trigger" is lacking and when it was given I responded well.

The stim test showed the adrenal response is good, but it is continually low production throughout the day.

The weight gain may be the thyroid. My TSH is low (0.56) and the T3 (3.0) is mid normal range, but the T4 (0.78) is low . The TSH in this scenario should be over 3.0, but it is not.
I also have 5 nodes on my thyroid.

My Sodium 138 [135 - 145] is on the low normal side and the potassium 3.9 [3.5 - 5.2] is the low normal side 360. Another weird thing....my CO2 is also low at 19 [20 - 32]

I had this exact same scenario a few years age (summer 2009)....low cortisol and low TSH and low T4....and felt the same, exhausted, unexplained weight gain, weakness, headache, constipation, close to all bedridden. It was then I was put on synthoid and a low dosage prednasone (only for two weeks) and felt a little better.

Here are some other lab results:

LH 7.0 [2.4 - 12.6]
FSH 5. [3.5 - 12.5]
Prolactin 8.1 [4.8 - 2.3]
Estradiol 47.0 [12.5 - 166.0]
IGF-1 262 [101 - 267]
Testosterone 23 [10 - 55]


Thanks for helping. I am close to losing my career if I cannot get better soon.
Helpful - 0
Avatar universal
Wait - you have not started pred and you gained weight?

The doc cannot rule out a pit tumor on prolactin only - what a maroon? What the pit only puts out one (1) hormone? Where did he go to school?

How was your ACTH handled - was it in a chilled EDTA tube - and spun immediately, or chucked in the bin with the rest of the tests? If the latter, it degraded and is low due to handling.

Technically on the stim test, you were fine - so going on pred (which is NOT the replacement of choice) seems a bit strange. Other hormones could suppress TSH like high cortisol and also have the same symptoms including the weight gain. I would guess more high than low cortisol - why does he want to add fuel to the fire? Do you have low sodium and high potassium?
Helpful - 0
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