Posts by frozentinker992

Can I get some advice?:-)

I just had a CT scan of my abdomen and pelvis. It was ordered because of high cortisol levels, a poor response during a low-dose dexamethasone test, sudden weight loss, and major issues getting my weight back to normal.
The main reason for the scan was to check my adrenal glands.
While I was there, I also had a full blood panel done. My total bilirubin came back extremely high—somewhere between 5.0 and 21.0 usually, but mine was at 46.1.
I’m not overly worried about that specific number since I was on hormone therapy for my ovaries at the time, which might have spiked it.

Everything in the CT report seems okay, but I’d love to hear some perspectives before I sit down with my doctor.

Basically, all the organs look normal in size and everything else looks fine...
The liver is a normal size with no focal lesions, though there is a small hypodensity in segment IV that likely represents a pseudolesion.
There are also a couple of lymph nodes, up to 6mm, near the aorta and just above the renal vessels.

I would really appreciate your thoughts—does this sound like anything significant, or are these just minor findings you shouldn't worry about? Thanks in advance! 👍

I have a question regarding a low-dose dexamethasone test.

About a year and a half ago, I underwent a low-dose dex test because my cortisol levels were elevated.
The protocol was taking a 1mg tablet in the evening and testing my cortisol the following morning.

The first time, my cortisol dropped below 25, which is within the normal range.

Then, a month ago, I repeated the test. This time, my cortisol was around 190; according to my endocrinologist, it didn't drop enough, so she sent me to run the exact same test again.

After waiting another month, the results came back normal—my cortisol dropped below 25 once more.

Now I’m wondering: can these cortisol levels fluctuate this much due to an underlying illness, or could this just be a lab error or something similar?

I hope someone here might have some insight. Thanks in advance.👍

Maria Fisher46 said:Hold on just a second!

Shouldn't an endocrinologist be the one interpreting these specialized endocrine results and deciding on the next steps?

Didn't the specialist explicitly list which tests you need to complete before following up with them for a review?

vividsailor7 said:Unfortunately, we can't resolve this through an online forum.
What's missing here is a thorough endocrine evaluation and meaningful analysis.
A dexamethasone suppression test is considered normal if cortisol drops below 80nmol, but it could still appear normal even in cases of episodic ACTH and cortisol secretion.
And frankly, it isn't surprising that a general practitioner wouldn't know how to properly write up these referrals.

My primary care doctor first sent me for morning cortisol along with my other hormone levels.
The morning cortisol was nearly double the normal range, so she had me repeat both morning and afternoon tests. Those showed a lack of diurnal cortisol rhythm, so she referred me to an endocrinologist since my androstenedione, testosterone, and 17-OH progesterone were also elevated.

The saddest part is that I paid out-of-pocket for $133 a specialist consultation, only to be told to run these specific tests—just ACTH and cortisol rhythm testing, plus morning values after a low-dose dexamethasone.
I was hoping they would order more comprehensive testing, but apparently, it wasn't necessary.
Based on those results, my GP wrote the referrals
and now I have no one to interpret the findings, unless I want to shell out
200-$100 dollars or wait 3-4 months for an appointment at the local hospital.

vividsailor7 said:First, you really need a thorough endocrine workup. Check your blood pressure,
get a full metabolic panel done—glucose, creatinine, urea, urate, K, Na, Cl, lipid profile...
Then check ACTH, repeat cortisol at 8h, 16h, and 24h urine, LH, FSH, testosterone, prolactin, P4, E2, DHEA
along with 24h urinary potassium and sodium.
The next steps will depend entirely on what those results show.

Just checking in.

I haven't done the general metabolic panel yet because my primary care doctor insisted my last cortisol reading was fine (even though it wasn't). 🙂 🙂
According to the lab, my cortisol levels were within range,
but the folks at the lab don't bother
to flag if a value is elevated compared to the morning cortisol; they don't include any warnings. Because of that, even the doctor likely missed that my afternoon cortisol is actually rising compared to the morning, even though both fall within the standard reference range. That’s regarding my old results.
(Nine months ago, my morning level was 1047, while the upper limit was around 680. Last month, my morning was about 440 and my afternoon was about 460. The lab uses a single reference range for both morning and afternoon, with an upper limit of roughly 480.)

Thank God for the internet, allowing people to research and understand how specific hormones should behave according to their daily rhythms...

I went to see the endocrinologist and basically told her off. $133
(Along with high cortisol, my androstenedione, testosterone, and progesterone were all significantly elevated—almost double for some. This ruled out PCOS, and I have to say, my OB/GYN told me my last cortisol result was normal. So, I had to explain to her that while it's technically "within range," the fact that the afternoon level isn't dropping but is actually rising is wrong. She eventually agreed that I needed to see an endocrinologist to rule out adrenal issues or tumors.) 🙂 🙂

Here are the results:
Day 1:
Morning cortisol: 379.6 (171-536)
Afternoon cortisol: 399.5 H (64-327)

Morning ACTH: 3.42 (1.6-13.9)
Afternoon ACTH: 10.12 (left blank on the report)

Day 2 (I took 1mg of dexamethasone at 10:30 PM the night before):
Morning cortisol: 24.19 L (131-536)

Could someone please comment on the ACTH? From what I understand, that should be dropping too.

My understanding is that this low dose of dexamethasone is used to see if the cortisol responds. If it drops, it suggests we can rule out certain adrenal diseases or tumors—meaning the cortisol isn't running wild on its own, but rather something above the adrenal gland,
which, in my opinion, could be the ACTH, meaning the pituitary.

Now, I'm struggling to interpret this post-dex results because the reference range listed for morning cortisol is lower than the one from the day I did my regular cortisol test without the dexamethasone.

So, I'm not sure if my post-dex cortisol is normal. I've read that after a low dose of dexamethasone, cortisol should drop below 50, indicating suppression, but you can't always trust that since it depends on which lab you use.

Also, I wanted to offer some advice to anyone dealing with cortisol issues: this approach is a good way to determine if there's a disorder involving cortisol or ACTH.
And don't bother testing cortisol without checking ACTH, and make sure to test it in the afternoon as well.

So, you take cortisol and ACTH in the morning, then again in the afternoon, followed by 1mg of Dex at about 10:30 PM, and finally, you do the morning cortisol and ACTH tests.

My endocrinologist set it up this way, and I honestly think this is the best way to start.
I managed to get everything done in two days, and my results were ready within three.

Sorry for the long post!

P.S. Oh, and on the second day, I didn't have ACTH checked after the Dex. My wonderful doctor forgot to include both cortisol and ACTH on the referral—only the Dex test was listed. Even though I showed the nurse at the lab the orders and told her I needed ACTH too, she insisted it wasn't necessary.

About a month ago, I had my morning cortisol tested.
1047 (138-689)
Then, after 15 days,
my morning levels were
433.1 (119-618), and my afternoon level was
446.4 (85-460).
The tests were ordered because my cycles have been irregular. I'm wondering what other labs my doctor might want to run, since my gynecologist can't start any treatment until we sort out this cortisol issue. Is it enough that the numbers dropped, even if the afternoon reading ended up higher than the morning one?

wearygardener19 said:Are you pregnant? Did you have a birth, an abortion, or a miscarriage?

You’re most likely Rh negative, and if the baby is Rh positive—regardless of whether it was a live birth, a miscarriage, or an abortion—you'll need that Anti-D injection. It prevents your body from attacking a future baby if they happen to be Rh+. When you're negative and the baby is positive, your immune system treats that positive factor like a foreign invader and builds antibodies to destroy it. The Anti-D shot basically neutralizes those antibodies so your system doesn't "remember" them. Since International Game Group stays in the system long-term (unlike M), you want every future pregnancy to feel like a fresh start rather than a fight against a known enemy.

That "notice" is probably just for doctors so they know they need to administer the Anti-D.

But let's wait for a doctor to chime in here to give you a better explanation; I'm just a layperson.

Thank you for the response; that was a really interesting explanation.
I tried Googling it, but I couldn't make sense of how that International Game Group function actually works.

I’ve never been pregnant, so I never had this test done for that reason. I actually had it done before a surgery, and nobody ever explained what it meant or why it mattered...
Since there were so many other confusing things in my lab results, I just forgot to ask...
Now I'm looking at this old report and finally wondering what it's all about...

My blood type is O+, and my indirect Coombs test (IAT) is negative, which I assume is normal. It's just the International Game Group part that's confusing because of this notice. If it relates to that injection, I wish I had known sooner! :-)

Hopefully, someone more professional can jump in and explain. :-)

Hi

On my blood type report, right next to the IBM anti "D," there's a little note

Does anyone happen to know what that's about or what this IBM anti "D" actually refers to?

thanks

Thanks for explaining everything... I'm almost certain they were damaged because of the cleaning agent... and because of their incorrect diagnoses, I was left waiting four months for surgery...
I suspect they didn't want to shock me by saying my ovaries were ruined, since they bear some responsibility too...
Then again, maybe I'm just overthinking things...
I'm going to see someone in Chicago... I think I'll go to Vuk Vrhovec... I just need to know the truth once and for all instead of living a lie...
Thanks again 🙂

Hi everyone,
I was hoping someone might be able to help me make sense of my current situation...

During a laparoscopic surgery to remove a teratoma from my right ovary and a standard cyst from the other, the surgeon performed a patency test on my fallopian tubes. To be honest, they didn't explain the exact mechanics of the test to me, but I was told my tubes are blocked. They suggested that if I can't conceive naturally within a year, I should come back for a procedure to clear them out.
Six months after the surgery, I saw a different gynecologist. Based on my discharge papers, he concluded that natural conception isn't possible for me and that any attempt to "clear" the tubes would be useless—he was quite firm about this, repeating it twice. He explained that during a laparoscopy, the condition of the fallopian tubes is clearly visible.
My discharge summary states:
"...via the previously placed uterine manipulator, methylene blue is injected, which appears in the distal portions of both fallopian tubes but fails to pass proximally or into the abdominal cavity..."
It seems like that last sentence in my medical report provides the actual explanation for why I can't conceive naturally.
I’m just confused. Why did my operating surgeon tell me to come back later for a clearing procedure, while this second doctor looked at the same paperwork and told me natural pregnancy is off the table?
Can anyone explain this specific test to me? Is this a definitive result that proves with 100% certainty that my tubes are blocked and there's no chance of natural conception?
Also, if my tubes are definitely blocked, am I still at risk for an ectopic pregnancy, or will I simply be unable to carry a pregnancy at all?
Thanks.