Mix of symptoms and test results please help

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Ok I will try not to make this long bear with me.

Age 34

Sex Female

Previous health issues

Emergency c section 2014

History of little or no periods

Endometriosis

Endometrial ablation

Tubal (no clamps)

Gallbladder dysfunction (9%)

Colon polyps

Ovarian cysts

Thyroid nodules (1 non diagnostic not removed)

All symptoms really started after my pregnancy or got worse during and after.

Fatigue

Muscle soreness

Trouble sleeping

Tired all the time

Headaches daily

Nausea

Pain in abdomen

Occasional vomiting (usually morning)

No sex drive

Thirsty always

Peeing all the time (5-6times at night)

Light headedness

Dry skin

Dry mouth etc

Here are tests I have had done

Date taken 12/11/2017

Tsh 1.20uIU/mL

(Lab range 0.34-5)

Previous lab results from 2014 til now are 0.54, 0.29, 0.51

Date taken 12/11/2017

Free T4 0.87ng/mL

(Lab range 0.60-1.80)

Previous results from 2014 til now are 0.96, 0.85, 1.11

Date taken 12/11/2017

Total T3 78ng/mL

(Lab range 87-190)

Only time measured

Acth stim test was done previously on 10/30/2017

Results were

No baseline acth was taken

Cortisol baseline 3.1mcg/dL

30 min 20.2mcg/dL

60 min 23.3mcg/dL

(Lab range 3.0-30.0)

He said I was normal so I pitched a fit lol and got him to test pituitary and my acth. Did not notice he again did take take acth and cortisol together. These were all tested 12/11/2017 also

Acth blood test 57pg/mL

(Lab range 5-46pg/mL)

ILGF-1 217ng/mL

(Lab range 41-246pg/mL)

FSH 7.9mIu/mL

LH 11.8mIu/mL

Estradiol 39pg/mL

Progesterone 1.3ng/ml

Because I have no periods and never really did maybe one a year I understand interpreting those last ones is impossible so I did not bother with the lab ranges. I can add them if someone feels them necessary.

See my doctor at end of January but I have zero confidence in him. The little I have gathered in the internet tells me the fact that he jumped start to a stim test with no base line acth and then said I was fine. When I tell him he couldn't fully understand it with out the acth he agreed to further testing but left out the cortisol! So I now know I have high acth but no idea what my cortisol is doing. Again I know nothing here.

Any help interrupting so I can guide my doctor would be great.

OR if any one is South East Michigan area knows of a good endocrinologist pleas let me know.

0 likes, 11 replies

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11 Replies

  • Posted

    This is blind leading the blind time but "Thirsty always; Peeing all the time (5-6times at night)" might point to Diabetes Insipidus (not 'ordinary' diabetes, D. Melitus), which is a symptom of malfunction in one of the many functions of the pituitary. Your pituitary does lots of clever things [see Wikipedia] and a malfunction can understimulate or overstimulate any, some or all of them. DDAVP controls it but you need to know what it is happening because it might be a signpost to the root cause of the other problems.

    Synacthen [synthetic ACTH] mimics the messenger hormone that the pituitary sends to the adrenals to prod them to produce cortisol. So you should always have some ACTH in your blood, more if your are ill. So a synacthen (stimuation) test should start from baseline cortisol followed by a resample again maybe 30 minutes later to check that a reasonable cortisol response has happened.

     

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    • Posted

      From what I understand for a stim test to fully understand you should have a baseline of both coritsol and ACTH. Then of course after 30min and 60min.

      If your ACTH is high to start and my coritsol is on the lowest end of normal, with the amount of acth injected it could still cause a response from adrenals that are exhausted but still functioning. Usually causing it to rise 5x or more than level of cortisol you started with.

      Am I completely off here?

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  • Posted

    I agree with Roddy.

    I am going through very similar surprise surprise. I have a pit tumor , hashimotos, my thyroid has been hyper for 8 was my t4 high t3 getting up there. NO SLEEP AT ALL every night 2 o’clock hear racing bp through the roof.  Gaining weight in mid section dry dry skin . If your ACTH is high there seems to be one of 3 reasons. Medication that has cortisol in it. Tumor on adrenal or tumor on pituitary. Keep on this you can not let this go. I will let you know they are looking into Cushing disease.

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    • Posted

      I'm sure you know this but just in case anyone else is reading:

      One may think of the pituitary as working like a central heating thermostat: too hot, turn off the boiler, too cold, turn it on.  A faulty thermostat could leave the boiler always on or leave it always off (or worse still, on/off at random for no good reason). A faulty boiler can ignore the signals from the thermostat.

      So a normal pituitary will identify low cortisol and release ACTH into the bloodstream to prompt normal adrenals into making some. There are similar systems to manage thyroid, testes, breast-milk, HGH and more,

      Medication with cortisol should cause low ACTH. Otherwise I agree with all you say.

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    • Posted

      So I got my results back from my 24 hr urine test. For the second time it’s high really high. The scale goes from 200-1800 my results were 3300 yup that’s right it went up from 2025. And now I have figure out should I go to Florida ina week.? Should I be concerned.
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    • Posted

      No idea I'm not a doc. But I hope your travel insurance covers you - unless you have a large trust fund you don't want to end up in hospital in the US. Your insurance is likely to be invalidated if you travel while an investigation is under way.

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    • Posted

      I don’t sleep at all and my tummy feels awful. Not nauseas no pain just awful. Hard to describe I have to assume bc of the Cortisol. No desire to eat at all, but yet I look 9months pregnant. Ya. Hear  ya about not getting sick in the states. So far if those are the only two major symptoms and trust me this is bad enough I can be sleepless in Florida I think...such a dilemma. I see my endocrinologist tomorrow . 
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  • Posted

    It is soooooo frustrating this endocrine system I have had several of your symptoms . I’m dealing with off the charts Cortisol right now off work . Tummy issues, no sleeping, no desire to eat. Can be up all night and still keep going during the day and again and again. You seem to be running high in the TS H you hover

    Around hyper.  Your ACTH was high as

    Well. Are you gaining weight in your

    Mid section? Are you waking up at the same

    Time every night ? How is your

    Blood pressure?

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    • Posted

      No weight gain been 100lb my whole life. Not sure on the times I wake up. Blood pressure of child always had been they use the child cuff on me. I'm getting a referral to another endo.

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    • Posted

      How are you? What are your symptoms ? Again you might have told me forgive me can’t see them here and I would like to refresh my memory.
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  • Posted

    there is something called Sheehan's syndrome

    that can happen post birth

    it is sort of like growth of an existing pituitary tumor

    Because you have no periods, your thyroid seems a

    bit wonky but I am not an expert

    this could definitely indicate an

    existing pituitary disorder

    you have to be careful with all the testing

    Look up dynamic endocrine tests

    I try to avoid these because they can

    can your tumor to grow more

    Anyways

    good luck

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