Help needed please ladies!!

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Hey lovely ladies (and any men out there)

Me again! Well I finally got to see an endocrinologist last week. He was actually really nice & didn’t fob me off as I feared he may. He confirmed I have Cushing’s syndrome & as suspected believes it was all steroid related.  He has put me on a reduction plan for the steroids & ordered a load of labs & ct scan of adrenals just to be sure. This is where I need your help. He said he was going to do a blood test to check my pituitary gland (then a ct to check my adrenals), to make sure (for peace of mind) that it’s definitely steroid induced Cushing’s & not pituitary or adrenal gland related.  Well today the labs have come back & a lot are showing as abnormal- including the pituitary blood test. Is there anyone out there who knows about Cushing’s blood tests & can help me interpret them (I’ve googled myself & that’s just spooked me lol!) 

My levels are as follows 

Serum prolactin- 601 mu/L

DHEAS - 0.2 umol/L

Serum testosterone- 0.1 nmol/L

Non HDL Cholesterol- 4.73 mmol/L

Serum cholesterol- 7.8 mmol/L

Serum tryglycerides - 2.9 mmol/L

Serum LDL cholesterol- 3.4 mmol/L

These are the ones that have been flagged up as abnormal online, others don’t have any flags so assuming normal. My FSH was 8.9 so think that’s normal ish. Still waiting on my fbc which checks how my Humira is working (for my crohns).

If anyone here has any experiences with these bloods as they’re all new to me (I know all about stomach related blood tests & can read all sorts of those labs!) then I’d really appreciate the input. I’m not due to see my endio for another 5 weeks so may go stir crazy by then! 

Thanks in advance ladies as always xxx

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9 Replies

  • Posted

    Your testosterone is low sometimes goes with Cushings yours is lower than mine mine was 0.3 it's the cortisol that causes the male tyr symptoms hair growth etc x your other tests dunno wheres the tests indicating pituatry source like your cortisol and acth they are what indicate a source pituitary or adrenal  as far as I know . The higher the cortisol the more likely it is adrenal if your acth is normal or slightly elavated indicates pituatry that's all I know lol this has been going on so long I've turned in to a bl**dy medical dictionary . I'm so glad there doing the scans to be sure because they never ever do that usually unless there sure so brilliant x 

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    • Posted

      Thank you. I’m like that with crohns related stuff although I’m learning quickly on Cushing’s now 😂

      From what I can tell then my adrenals r ok but pituitary looks iffy but don’t know how high it needs to be to be classed as “high”? 

      They’re only scanning adrenals so who knows lol... bit of a guessing game.

      I do suffer from daily headaches and wonder if that’s anything to do with the pituitary or testosterone? 

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  • Posted

    Headaches probably pituatry and pituatry Tumor can squash/  lower other hormones hence probably why your testosteones low and you got other pit hormones flagging up . Again your complicated cause of the steroid thing but someone not on steroids that's what it would indicate x 

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    • Posted

      Thank you. Saw my GP this morning & she said pituitary bloods would be in the 1000’s before they’d be concerned & mines currently at 600 but may need to do a scan anyway. She said other ones she’ll email over to endiocrinologist to look at..  Who knows 🤷🏻???

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    • Posted

      I've just realised you said your gp said this to you , it is guaranteed your gp knows nothing bout this ! Even most endos don't .refernce Range for morning cortisol is up to 625 ish to 690 depending on reference anything above that range should be looked into mine was only borderline for the professor to delve further 

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  • Posted

    Who you seeing is he a Cushings specialist ? I was told by endo  everything was fine until I got a specialist option from a professor he was concerned that my cortisol was nearly 700  and said I need more testing yet the other guy said nothing was wrong , apparently adrenal tumours are more likely to cause the cortisol to be in the 1000 s or more severe Cushings . I can only tell u what I've been through I have learned to trust my instincts and not Drs 

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    • Posted

      You’re so right. Back in August I did the 24 cortisol test - that came back at 1150,(normal below 250), then did the suppression test that came back around 170, repeated suppression test in the hospital (I was admiygor a few days cos of heart rate) that came back at 78 (so slightly lower). The endiocrinologist said that all those tests are immaterial as I’m on steroids 🙄 He then did all the above tests (I’m still on steroids) just to check but said it’s definitely the steroids causing this (I’m questioning this as I was ill prior to steroids- it’s just got worse since starting them). The prolactin pituitary test has come back raised but my gp today said that it’s normal & if I had a pituitary issue it would be in the thousands (mine was 601). She did say the DHEAS & testosterone tests needed to be emailed to endiocrinologist as very low (pretty much as low as can be) but no idea what that means. My cholesterol was high but I’ve got diabetes cos of all this now (and just started metformin for it which is making my stomach really bad!) 

      I just wanna feel better & know where I’m at. As far as I’m concerned if a blood result shows out of normal range then somethings up... or maybe I’m just being a drama queen & have too much time on my hands lol 😕

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  • Posted

    Just keep on your doctors until you feel comfortable. I went to my doctors two years ago screaming i had cushings. They tested me and said everything was normal. This year i asked to see an Endo. He ran the same test and they come back Cushings.
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    • Posted

      Thank you. My tests all came back confirming Cushing’s but they’re still dragging their heels cos of the steroids 🙄 Either way I feel pants regardless of the cause... 

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