Avatar universal

Should I Pursue it Further? Blood Test Results.

Hey everyone -
I wasn't sure where to post this, but I've been doing some research and I'm worried about the possibility of Cushing's.

Long story short, I've had weird medical issues for several years and I've seen multiple doctors along the way. I saw an endocrinologist who sent me for extensive bloodwork back in 2012 and I believe he said he'd call if anything came up? I got the printed results from my GP but didn't look at them until last week when I was doing some cleaning. I was diagnosed with a Chiari Malformation and syrinxs shortly after that endo appt, so we just assumed all of my issues were caused by that. At the time of my original NS appt in 2012, I weighed almost 350lbs as a 21 y/o female. In order to have decompression surgery, I had to lose 100lbs as it was too unsafe. It was incredibly difficult (I practically gain weight by looking at something) but through a medical supervised starvation shake diet (500-750 calories per day and only the shakes for several months), I lost the weight over a period of a year and a half. I am now 7 weeks post op from a craniotomy, laminectomy, cerebellar tonsillopexy, duraplasty with muscle fascia for my Chiari Malformation.

Problem is, I still have plenty of symptoms that I couldn't attribute to Chiari. I'm 23 now and have only ever had 1 natural period and 1 forced by a course of progesterone to shed my lining to avoid cancer. I have absolutely insane facial hair problems (waxing weekly) and I've developed acne. My natural body temperature is around 96.5F, I can't seem to regulate my temperature naturally so I have hot flashes a lot, it's incredibly difficult to loose weight, my face is very red and ruddy constantly. I gained 80lbs at the age of 12 for no reason - I ate incredibly healthy and was very active. I was then put into weight control treatment which ended up giving me an eating problem - while some of my weight gain stumps me, I can honestly say a chunk of it is my fault. I have insulin resistance, was diagnosed with extremely high cholesterol/triglycerides at the age of 8 (pre-weight gain) that has been relatively normal now for several years due to dieting. My weight is mostly centralized, and I'm covered in wide (1cm) stretch marks. Some are dark red/purple in color, but most are a dark pink color. My blood pressure is actually low-to the low side of normal most of the time. I have a lot of symptoms that I contributed to Chiari - fatigue, extreme headaches, major vision problems, tremors, tinnitus, dizziness, vertigo, adult onset motion sickness, muscle weakness in extremities, black outs. However, I've now had the extensive surgery for Chiari and while it's still early in recovery, a good chunk of my symptoms are still here. I also suffered from severe depression and anxiety for many years but am doing well after extensive therapy. I also have a buffalo hump type thing but I'm not sure if it's fat or if it's neck bone? Regardless, there is a discernible lump between my shoulders.

All of my health problems (with the exception of the puberty weight gain) started at age 15 when I blew a pupil. After multitudes of tests, even though I didn't respond to the actual pilocarpine test which is the diagnostic criteria, they decided it was Adie's tonic pupil. It means there had been nerve damage to the pupil and its paralysed in a dilated position. My other pupil is now affected and still constricts, but not fully, and very sluggishly. I had been previously diagnosed with PCOS to explain my menstrual symptoms, but I've never had raised androgens or cysts, so they took away the diagnosis last year. I was told it was obesity and everything would clear with weight loss - I've lost 100lbs to be 240lbs now and have only had increased symptoms with no resolution.

A few weeks ago I found the blood test results and to me, some of the results seemed worrisome? I did some research and I found Cushing's as a possibility. If I bring this to my doctor, I want to make sure I'm not nuts...especially since I've had at least 3-4 brain MRIs over the last 8 years, and none of them mentioned pituitary problems. Plus, my cortisol was normal, but I also didn't do the full 24 hours of urine - I ran out of room so stopped mid-night, I didn't know that might be an issue. Or maybe it really just is PCOS/obesity/? I just wanted an opinion.

Blood work from 2012:
24 hour cortisol:  128 (normal is under 275)
Morning cortisol: 582 (normal is 170-720)
ACTH: 16.6 (normal is 0-10.1) **High, was noted it was double checked to confirm results
Growth hormone: 0.05 **low?? normal?? was noted it was double checked to confirm results
my potassium/sodium was at the high end of normal, but I figured it wasn't an issue? I can get the numbers is need be.

I'm sorry this was the short story version and it still turned out to be long!! Feel free to let me know if I should not pursue this was my family doc...you guys are the experts! Best wishes and thank you!
16 Responses
Avatar universal
It sounds like you have already been through the wringer with enough issues - so often docs won't even look for anything else.

It looks like they tests as they suspected the Cushing's themselves, but then saw the results and moved on. I had Cushing's myself and I know diagnosis can be rather difficult.

As for running out of room in that jug and stopping - that is surely an issue. In that case, you should have reported it, and repeated the test with 2 or more jugs. Then the two jugs have to be mixed and the sample taken from them. Your test was not valid. It is not an easy test. I still have to do them now - not my fav.

Did they do GH or IGF-1? GH is not the proper test to do, but IGF-1 is as that is the hormone used by the body.

As for PCOS.. I had PCOS too so it can be that as well. I can tell you many of us had PCOS as well (not all) so just having one disorder does not preclude you from having another. If the doc says that, then you need to find another.

Unless the radiologist is looking for a pit tumor, then he may not find the lesion, and it can be small and fall between the MRI slices. Sometimes a surgeon can see things a radiologist cannot pick up. Did you have contrast?

Any other hormone testing?
Avatar universal
Thank you for your comments, Rumpled!! You're right, it's just been one medical issue after another for me; at 23, I've had 7 surgeries and I have several diagnoses and issues. Part of the reasoning behind this post was to see if it was even worth it to battle with doctors for a diagnosis. I mean, part of me wants to let it go but the other part of me wants to advocate for my health and get back to who I used to be before all this began. I'm terrified of my doctor accusing me of diagnosis seeking or something similar.

I'm not sure what other hormones the endocrinologist tested: I know all my thyroid (including T3 and T4) appeared within range, as with my androgens and LH, etc. I can find all the values if you'd like and post them, I have the full run down of results. I also don't know what growth hormone they were looking at but I will check (I'm just responding on the run and don't have the results with me). Yesterday I read that elevated ACTH and normal cortisol could just be a symptom of morbid obesity. If it wasn't for the growth hormone, I might just fold? I also found something that appears to a buffalo hump? Or perhaps it's just bone? I have a picture if you're willing to look.

I can provide any test results from the blood work in 2012. Should I pursue this or just accept that it's obesity? Even if I've lost 100lbs?

Thanks again for your response and I'm sorry if I'm watching your time.
Avatar universal
Sorry, forgot to add:

I didn't understand what the test was for and was unaware that I should've reported it. I feel awful now - I guess the question is, do I beg my doctor to repeat the test if my morning cortisol was normal? There was a note on the results that mentioned the am cortisol was approx 1/2 the 24h cortisol, is that the way it's supposed to be?

The results page doesn't list specifically, it just says growth hormone and the range states <=8 is normal.

Multiple scans with contrast on my cervical and thoracic spine, but not brain - I'm assuming the pituitary gland is too far away from the cervical spine to be viewed, correct?

Any advice about what to do and if I should move forward would be appreciated. Thank you!
Avatar universal
The UFC is not an easy test... many but not all will use one jug but I know some who will fill 2 or 3 jugs. That can also indicate a pituitary issue. Are you thirsty all the time? Do you drink a lot? I did not mean to make you feel awful, it is more the doc that should have given you proper instructions.

The scans then covered your neck (cervical) and upper chest (thoracic) area and you had none on you brain... the pit sits behind the eyes. It was out of range.

Sadly, most endos are not super skilled at testing for Cushing's (it takes a lot of us years to get diagnosed for this reason, it took me 12 years!) so I always advise to get copies, read up on testing, learn what the tests are (there are sites in the health pages below to help) and then you know if the doc is good or if you need to doc hop.

I had to go thru the same process. I had to get diagnosed with other things - some correct, some not...

As for the obesity the cause... I find that kind of a cop out IMHO as a patient. In my shoes, I saw the docs treat me as a secondary type of person, a liar and all sorts of stuff when I could not lose (I was on diet pills, supervised etc.) and my list of foods I ate suspect etc. My job was compliance, and I was utterly truthful, so I found being called a liar very galling! I had no idea why this was happening to me so it was so upsetting.

It took me over 11 years to even hear the word Cushing's and once I did, I knew (even though the doc that said it, ironically put it in writing that I don't have it - I always felt like sending him my pathology)... from knowing so many with it, all I know is that we are all slightly different.

Not everyone has a hump!
Avatar universal
Thanks again for replying! I am literally thirsty all the time - I probably drink at least 8 bottles of water a day? I am always always with a water in hand but have never been diabetic (just insulin resistant).

I have always struggled with my weight but did manage to lose 100lbs, although it was very difficult (my body seems to cling to weight). When I was 12 I gained a ton of weight for no reason, and a good chunk of my weight sits around my mid-section. Same thing as you when I was younger ..  I was accused of lying, cheating, etc when I really was doing everything asked of me. I ended up developing a food problem but that's a whole other issue. Is it still possible to have cushings if I was able to lose weight?

And don't worry about commenting on the UFC, I feel awful simply because I may have cheated myself out of an answer, not awful cause you mentioned it!! However, my morning cortisol was still normal even if I didn't complete th UFC correctly so I'm worried about that.

Either way, I've made an appt with my doctor for a week from now and I think I'm going to request that I redo the ACTH, growth hormone and cortisol tests. I'm not sure my doctor will agree but I'm going to try. I know you had asked about the growth hormone - is there a specific one I should ask her to test for?

Thanks for continuing to ask my questions! I'll keep you updated.
Avatar universal
I've been doing some reading and my ACTH reading of 16.1 pg/mol falls within normal guidelines based on some labs. My labs reference range is 0-10 so it showed my number as high.

If you remove the ACTH reading, you're left with low growth hormone, normal ACTH, normal morning cortisol and UFC cortisol. I might have the symptoms (central obesity, red/flushing face, menstrual issues, thirst, fatigue, severe hirsutism, moon face, muscle weakness, depression/anxiety issues, and striae) but I'm starting to wonder if it's worth fighting with my doc if my previous tests don't actually support the idea of having Cushings. I'm so confused.
Avatar universal
There is another form of diabetes - not sugar but water. That is a pituitary issue. In that case you would pee a lot, as well drink a lot.

There is also FSH, LH, prolactin and TSH - but you need other tests to show the entire loops. IGF-1 is the proper growth hormone test. 8am fasting is the right time to test cortisol.

You have to go by the range on your lab, not what is on the internet. Labs use different ways to test so you have to use their ranges.

Your symptoms do support more testing. Your doctors are just not familiar enough. It really sounds like you do have a pituitary issue (as a layman, just knowing what you are posting) but it takes a bit to get to the bottom of the issue.
Avatar universal
Thanks again, Rumpled!! I have an appt with my GP on Monday and I'll hopefully get the requisition to run all the necessary tests. I'm not sure it will happen (my doc firmly believes everything is due to my obesity) but I'm going to give it a shot. I'll keep you updated!

Also, yes, I have to pee ALLLLLL the time. I'm unfortunately known for it.

2 more questions for you: is it still possible to lose weight with a pituitary issue? It was very difficult, but I did get off 100lbs. And my striae used to be dark but now look quite normal as they've faded over the years  (there's just a lot of them and they're fairly wide, some probably 5mm to 1cm across. If they were caused by a pit issue and not just weight gain, would they still have faded to a normal color? Thanks again!
Avatar universal
Also, would you say this looks like a buffalo hump? Or am I overreaching?
Avatar universal
Obesity has a bad rap... but sometimes the cause is medical. I know, I was gifted many an exercise video and diet book!  Then I got a dog disease (at the time when you searched for Cushing's the first links were for vet sites about dogs with Cushing's!) so it was lose lose except for my two chins.

I had a cyclical form, so yes, my weight would vary. I also did not gain weight for the first 6-7 years I found out later I had my tumor. Not everyone has striae. Not everyone has any symptom. It is a wacky thing.

I still have my striae, but now they fade unless I take high dose steroids.
Avatar universal
Hey Rumpled!
Once again, I appreciate you taking the time to answer my question. Oh goodness, a dog disease....It's funny actually, I was a competitive horse back rider for many years and Cushing's happens in horses quite often, so I didn't even realize it was a human disease until I started looking!

I saw my family physician today and they were skeptical I have an issue, blamed everything on my weight, despite my 100lb weight loss. Refused to repeat or order blood work, but did send off a referral to an endocrinologist (the same one who previously tested me for Cushing's and the weird ACTH/GH results are from his testing). Now I just have to wait a year or so to get in!

My concern is that if I do have Cushing's, it's cyclical, and I could almost guarantee you that my blood work might show something right now - I just feel different and remember having these periods before. With my luck, by the time I make it to the endo, I'll show nothing again.

I guess this is where my journey ends - thank you for all your help! If I ever get an answer, I'll come back!
596605 tn?1369946627
Hi there,
I've read that there are many with Chiari can also have pit issues. Obesity in my mind is usually medical and hereditary mostly. I was like you and gained a fair amt of weight in puberty. My three sisters did not. I was adopted as an infant, while two of my sisters were not. I was obese, they were not. We ate the same, did the same sports etc.  weight was a constant battle. Like Rumpled, I also got lots of exercise tapes as gifts. I was already an experienced dieter by the time I was 14 years old and had memorized the calorie count of most foods. When I went to college I studied nutrition and became a registered dietitian to try and better understand.
So yes, I've been able to lose weight although it is and has always been very hard for me.
Fast forward to age 40 and I had headaches, fybromyalgia, a plethora of hormonal probs. had a buffalo hump, striae, PCOS stuff and more. Everything was always about the weight. Finally I had a doc who believed me, if that makes sense?

Labs done. MRI done. Also had high prolactin (200), low IGF-1(70), low normal thyroid, weird sex hormone levels and some slightly high AM cortisol and 24 hour cortisol.  I was dx'd with a prolactinoma and put on meds. Had awful side effects

Opted for surgery and it ends up that I had a Rathkes Cleft Cyst removed transphenoidally. The path report also stated that ACTH cells were mixed in. They think I still have a small prolactinoma as my levels are still elevated to this day.

Now I am 50 y old. Still obese, but at peace with myself.

If you feel in your heart that something is wrong, get it looked at and trust in yourself. Be proud and hold your head high. We are not all the same, thankfully. But we deserve to be believed.

Take care-
Avatar universal
I also find that once you have once rather significant diagnosis, they tend to not look for anything else. and if you have anything rare, you cannot have anything else anyway. Cushing's is a weird animal anyway (pun intended) and those of us with it feel it is not so rare as rarely diagnosed.

I had to doc shop a lot to get help. Most endos really don't know how to test or interpret the tests. It is why many of us take so long to get a diagnosis.

Your journey should not end here. We are here for you for support anyway.
Avatar universal
Hey Horselip and Rumpled!

I totally understand where you're coming from - I gained a ton of weight for no reason during puberty. I may not have recieved exercise tapes but I was constantly being pulled aside by teachers and I was put into eating classes and therapy at age 12. They thought I had a problem when actually, I was active and healthy. I did end up developing a problem with binge eating eventually, but that initial weight gain was not my fault.

Thanks again for the support. I'm at a loss, at this point, though. My biggest way to getting help was angling the main issues as my total lack of menstrual period and guess what showed up tonight? I don't even know if I believe there's something wrong anymore - I mean, this is still only my 3 periods ever (2 in the last 7 months) and I'm in my 20s, so it still qualifies as severe menstrual irregularity. But they're going to attribute the period to my weight loss, I can guarantee it and how can I dispute that?

My other symptoms are bothersome but docs are probably right, they are just due to weight. I still have a referral to an endo and I'll ask him to redo the blood work, just to see, but I'm not hopeful. That low growth hormone number is nagging at me though, so I'd like to see it redone.

You're right Rumpled, once you've got one major thing, you're done. Especially cause the symptoms of Chiari are so varied that they're not sure what to attribute to it. Actually, it's funny that you feel that the disease isn't rare so much as rarely diagnosed; it's the same feeling in the Chiari community!

Horselip, I'm glad you've found peace! Most important part of life is finding peace within. Thanks again, both of you, for your continued help.
Avatar universal
You had weight loss, yes, but if I am correct, you are still overweight? Just being overweight, as far as I know does not cause abnormal periods. That is a function of the hormones. So losing should have made them more normal, not less. They should still look at a hormonal abnormality. In my case they always said it was PCOS, later endometriosis - both of which I had, but I also had the Cushing's and it was not until the Cushing's was resolved as that was the *topper* hormonal issue.

It took a while to get it all sorted - and for me it was that the treatments for PCOS and to regulate my period just would not work.

I don't mean to imply you are done... just that you have way more work. It can be done! I did it and I know others have too. It is just harder to fight the narrower docs.
Avatar universal
Hey Rumpled!! You're totally right, I am still overweight and you'd think it would've made it better with weight loss. I mean I did restore the period, but everything is still very irregular. But fighting a doctor over it is going to be difficult!!! You definitely didn't imply that I was done in the slightest, but I am feeling done these days - I'm still recovering from brain surgery and I'm looking up new diseases while I heal, it feels awful. Besides, the more I read about Cushings, the more torn I feel - while I do have lots of Cushing like symptoms, I also have massive exclusionary symptoms like my low-normal blood pressure. I also am hard to bruise, heal very well and haven't had an infection in years.  I know not every one has every symptom but I've read high blood pressure is a pretty standard and important symptom!

Regardless, I've got an OBGYN appt coming up and a wait for an endocrinologist (probably a year or so!) so hopefully I can get someone to listen. But I'm not getting my hopes up at this point. I did have a family friend who is a nurse practitioner offer to check out my medical history though, so I'm going to mention the idea of something pituitary related and see what they think. As always, thanks for your guidance!!
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