Altered circadian rhythm?

[Guest Sbr]

Hi all,

 

I hope you can help me out with this. I've been gaining weight for the last 3 years, over 100 pounds, going from underweight who could not gain muscles to obese who can't lose fat. This weight was not gained steadily, but in bursts of usually 20 pounds in three week periods. Sometimes there is also weightloss, but the trend is weight gain.

 

I have developed several wide striae in the belly, back, around the nipples, under the arms and in the buttocks, purple in the beginning but light color as of late. The bottom of my belly has more striae area than normal tissue. Memory is severely impaired. Body temperature is usually below 96F. My sleep patterns are now usually inverted, it's nearly impossible for me to keep myself awaken during the morning and nearly impossible to be asleep during dawn. Blood pressure is usually 16x10 without response to any medicine given to me, butin some crises it went to as high as 20x15. I also have a rapid heart rate (110 bpm usually), severe fatigue and short breath most of the time.

 

Have been tested for Cushing's. Three UFCs scored 188, 311 and 358 (microgram per liter. Lab range is 28 to 213 - chemoluminescence - which I would like you to comment on). Basal fasting serum cortisol at 8:00 AM always low. Five tests scoring between 0.7 and 3.2 and one at 6.2 (lab range 4-22 mgL). Serum vitamin D scored 7, then 28 after 10000UI per day for two months and then 20 (lab range over 30 for normal and under 20 for deficiency) after spending a month in the tropics, taking sunbaths everyday. I also have low FSH, low LH and low GH. As the suspicions were high, I've had both adrenal and pituitary MRIs, both normal.

 

I have recently been dignosed with IBS and duodenal mucosa atrophy, however treatments are not working well and are only aggravating my several food intolerances.

 

Any ideas? Could it be any other thing? May it be that they have not seen something on the MRIs?

 

Thanks in advance.

[MCF]

Reversal of diurnal rhythm is certainly a hallmark of Cushing's. Who is ordering your endocrine testing and what does s/he say about your symptoms, signs and results?

[sbr]

Reversal of diurnal rhythm is certainly a hallmark of Cushing's. Who is ordering your endocrine testing and what does s/he say about your symptoms, signs and results?

A local endo is ordering them. Says it's not Cushing's because my morning basal cortisol is low and my striae are not purple. Now I'm being treated for IBS. Treatment alleviated gut problems in the beginning but now causes me pain and constipation.

[MCF]

Lots of folks with Cushing's have NO striae... Have you tried cutting grains and sugar from your diet for your IBS? If not, I highly recommend you experiment with that. Your endo is confused or just not carefully reading the literature if she does not recognize diurnal reversal as highly diagnostic vs. a.m. lows. Have you read the testing forums in the archives here, and also the symptoms forum discussions? So much collected experience and wisdom in those archives.

[sbr]

Lots of folks with Cushing's have NO striae... Have you tried cutting grains and sugar from your diet for your IBS? If not, I highly recommend you experiment with that. Your endo is confused or just not carefully reading the literature if she does not recognize diurnal reversal as highly diagnostic vs. a.m. lows. Have you read the testing forums in the archives here, and also the symptoms forum discussions? So much collected experience and wisdom in those archives.

 

Actually I can't eat grains, fruits, raw vegetables or beans. They are not properly digested and cause me terrible flatulence, diarrhea and abdominal cramps even on external belly muscles. I feel very weak if I eat them. Most of time I eat cooked vegetables and meat which don'tmake me feel bad. I can't really cut sugar. Despite my glucose levels being normal, around 90, I experience some hypoglycemia like states which get better when I eat some candy. Actually I feel very sluggish if I don't eat sugar, but I try to keep it to a minimum. I forgot to add that I also have chronic ilness anemia.

 

I've read a lot about Cushing's here. It really looks to fit my description. Mucosa problems make me even more suspicious. But I wonder if some other condition, like SIBO, cancer somewhere in the body, damage to small gut, parasites within an organ might cause all those symptoms and make my adrenals to behave like this.

[MCF]

Tissue atrophy, including mucosal, is typical of steroid excess. In my case, frex, it's led to years of blood in my urine with no bacteria cultured or from my nose when blowing. If you're experiencing hypoglycemia even having protein with all meals and snacks and not high carbs you may be having hormonal cycles... one of the roles of cortisol is to increase glucose production.

 

If you have no meds or conditions contraindicating it, taking some blended (potassium and sodium) lite salt can quickly restore normal heart rate and bp... also, time released potassium chloride (by rx) and SloMag (OTC) can really keep both of those in normal rhythm, too. When I feel low on cortisol is when my bp and hr rise; salt actually lowers them, as do the others I mentioned.

[sbr]

That surprises me. I've been on low sodium since the symptoms began but it really has done nothing to make by bp any better. I've had a lab result with low potassium as well (I've done so many lab tests and so many of them came out of range that I decided to post the ones I think are most suitable to this evaluation. Please tell me if that's not desirable). Overall, I notice I get better if I take mineral supplements.

 

Anyway, you helped me a lot. Docs think I got SIBO due to mucosa atrophy (obviously I couldn't be celiac as I'm obese now), but IBS treatment with added probiotics are not improving anything anyway. Docs told me to forget cortisol as it would come back to normal as soon as the gut problem was solved, but my UFC value came highest in the last lab test, along with low morning cortisol again. I think I have to go somewhere else.

 

It's very likely to be Cushing's right? I'm so afraid of having some sort of cancer or parasite infestation that Cushing's looks like a less pernicious disease. But my emotions shouldn't interfere with any evaluation of course.

 

Thank you very much for the help.

[brnice]

I don't have stretch marks but was diagnosed with cyclical Cushing's. I also can't sleep at night (only during the day) and gained weight in spurts as you described.

[MCF]

I think your doctors are overlooking the tissue atrophy and gastric manifestations of hypercortisolemia! For now, if you've had low K and you've been restricting salt, you might try Morton's blended lite salt in some water or sugar free beverage. Salt actually is required to open the channels for potassium to be delivered where it's needed. Sometimes taking K will make my foot and leg cramps worse unless I remember to take some salt with it, even when I've taken time released K. Lite salt is great for this.

 

You need a full endocrine workup, and when you look at those symptom lists, remember that Harrison's Guide says that striae only occur in 67% of cases. A person isn't required to have all the symptoms or stigmata, and some have none.

 

You certainly could have Cushing's or some other HPA axis dysfunction. Many folks have more than one thing going on.

 

I don't think you should cherry pick or edit your out of range findings. Often, even normal results, when taken in context of the abnormals, are informative, too. It's a pattern that helps a *smart* doctor nail things down, not individual results, typically.

 

But don't get me started on just how extremely rare smart, helpful doctors are, particularly endocrinologists. :-/

[sbr]

Thanks MCF and brnice. You've been really helpful. brnice, I really can't think it's something normal to gain weight (and lose) in spurts. That doesn't look to be related to IBS.

 

MCF, I'm not editing my lab results. Well, I'm cherry picking the ones that came most out of range, but for the forum. I've been tested even for celiac disease, fructose intolerance, lactose intolerance, essential hypertension, etc. I don't believe those results would really be helpful. But I'll try my best to correct it: one thing I didn't mention was that I was tested with dex, but only for plasma cortisol and ACTH at 8:00 AM. With dex, my cortisol came 0.7 (the lowest) and ACTH below 5, which doc told me was because it was suppressed. Another ACTH some months earlier came 11.9 and cortisol at that morning at 6.2 (the highest and only one within range, both before and after. The other ones were always low).

 

I wonder if I was correctly tested. There was no UFC with dex, no salivary cortisol and no plasma cortisol measured in any time other than 8:00AM. Perhaps those would have been really helpful?

 

Well, by your comments and literature, looks like not only Cushing's is not to be ruled out but it's also still likely. Doesn't sound like cancer or chronic infection reaction right? And UFC values seem to be pretty high as well, don't they?

 

My endo looked helpful, but looks like she quit me. She strongly believed it could be Cushing's at first, so went on with tests. But after MRIs, looks like she quit. She tried to find another reason for my high cortisol. In the end she was considering bariatric surgery, which I don't think will really help. I feel hungry, but due to my food intolerances I end up eating less today than I used to when I was underweight (when I could not gain muscles despite all the workout I was doing. Perhaps because of cortisol already? I was having some bp peaks by that time too, but overall had normal bp), so I can't believe a bariatric surgery will do any good. Perhaps it's time to look for another endo?

 

Also, there is a possibility that a microadenoma was missed on MRI, particularly on pituitary. But by my readings, looks like an MRI is not really so necessary, many times it's possible to have a good clue only by blood and urine tests, correct?

[BDen13]

If I'm interpreting this correctly and all your blood and salivary tests have been at 8 AM, then no - you haven't been tested properly. The best way to diagnose cushing's is to test late at night.

 

It's very hard to see a microadenoma on an MRI - especially if the correct protocol was not used (I expect it wasn't) and if the reader is not experienced in detecting pituitary microadenomas.

[MCF]

It sounds as if you had the overnight dexamethasone suppression test, one which has proven to be extremely unreliable in diagnosing Cushing's. In fact, most of the folks I know from here and elsehwere who've gone on to have severe Cushing's have suppressed to normal as you did. The overnight test is a blood draw, not a urine test. I have to echo that using 8 a.m. testing for Cushing's is a new botchup even on these boards, where we've seen lots of reports of failure by doctors to do proper evaluations or to even have a basic understanding of proper testing and diagnostic signs for Cushing's.

 

Yes, you certainly can have Cushing's, or Cushing's and something else. And yes, even those lactose intolerances (mine comes and goes), etc, are all part of a larger picture. They also help to let other folks let you know if their constellation of tests, symptoms and signs have been similar to yours, and if they're ahead of you on the diagnostic curve, that can be instructive and time saving for you.

[sbr]

Hi MCF!

 

Sorry for the belated response. Yes, the test done was the overnight dexamethasone suppression test.

 

As for lactose intolerance, I think I may have made myself misunderstood here. Fortunately, in spite of all my intolerances, I tolerate milk very well even during my worst times.

 

I'll take some other tests in the next days, even 4pm serum cortisol, along with some other hormonal tests. Looks useful. Let's see what comes up.

 

Thanks!