Losing hope - my endo thinks I have Cushing's

CFS_for_19_years

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I saw my endocrinologist Thursday because I thought I had adrenal insufficiency and needed to have that worked on. She surprised me and said she thought I had high cortisol, i.e. Cushing's syndrome. I have to agree with her assessment because I've gained a ton of weight over the last two years. My other symptoms have been a pounding heart 24/7, never rapid and I've been taking atenolol for that for two years. I've had more fatigue and my heat intolerance is horrible. I sweat in a nightgown when it's 70 degrees. I don't go to sleep at night.

The other thing she suggested screening for is pheochromocytoma, a type of adrenal tumor.

I'm just now starting to do the screening tests which involves collecting a 24-hr urine for cortisol. There may be other tests ahead like a midnight salivary cortisol and/or a dexamethasone suppression test. Once I've received a firm diagnosis, then there will be imaging studies to figure out where the tumor is. It could be on the adrenals or pituitary or lung. Getting rid of the tumor involves surgery and/or radiation, chemo, or suppressive drugs.

Sometimes the entire adrenal glands are removes and guess what happens then???? Instant adrenal insufficiency that means a lifetime of hydrocortisone replacement. If it's a pituitary tumor that's causing the problem, sometimes the surgery fails and they have to go after it a few times....multiple brain surgeries! If they can't get the pituitary tumor, they say screw it, remove the adrenals.

I'm 60 and have been fighting CFS/ME and fibromyalgia since 1990. I had some adrenal testing in 2007 which showed I was clearly deficient then (saliva testing) so this Cushing's stuff would have developed sometime after that. It could have even started four years ago when I started to pack on the weight.

I'm really weary and can't fathom fighting all this crap. This feels like a cruel joke. Right now I'm just venting. I know there are Cushing's support forums and I tried to register at one and got a server error message so I'll try again later. I know that people here understand and can relate to the weariness I'm feeling. I don't live near any friends or family. One family member won't discuss this until I have the diagnosis...thanks a bunch. I've set up a page at carepages.com so family members/friends can follow my progress. Not one person has registered there yet, even though I've sent them invitations. I set up a carepage so I wouldn't be sending out batches of emails; I would just have a web page.

On top of the suspected Cushing's, my thyroid is off. I have an elevated TSH and normal free T4 which indicates mild thyroid failure. My endo hasn't told me what she thinks of that. I sent a message to her and asked if she would test for thyroid antibodies. My kidneys look iffy too. My GFR dropped 11 points in 3 months - from 68 to 57. My doc wants to wait 4 weeks to recheck that. All I can say is crap crap crap....what the hell is going on.
 

CFS_for_19_years

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Thanks snowdrop, alex3619 and AndyPandy for your words of encouragement. Alex, I had the same thought as you for a moment: Finally, something treatable! I wish the cure would be a handful of pills. There are some new drugs on the horizon, but surgery seems to be the traditional way to go.

Looking back on my flagging energy levels, this might have been affecting me from about 2010 onwards. I had been doing a little bit of home-based telemarketing (and I mean little) and I had to stop doing that around June 2010 because I just hadn't have the energy to do even 30 minutes of focused desk/phone work.

Using Bell's Activity Scale, I was about a 4 in 2009 when I could do some desk work and now I'm at a level 2, where I'm mostly bedbound and homebound. I rarely leave my home and I've given up on doing even the lightest bit of housework such as keeping the kitchen sink free of dirty dishes.

My concern is at my age, surgery is not going to be a walk in the park and I may only gain "2" more activity level points for my trouble. That and the sweating and palpitations should go away. A few months after surgery people do report weight loss - hope, hope, hope! I guess there will be some things to be grateful for if treatment is successful.
 
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I have been in a similar situation where the doc said they think I had something unthinkable. Please, remember that just because they think it doesn't mean that will be your path. They are just speculating, putting out options. It doesn't mean its the truth. I have had docs tell me I had MS and the depression and devastation that followed that was horrible. In the end it was CFS, thank God! I think they don't realize that we have to go home with their possible diagnoses weighing down on us. I am hoping for the best results for you and I really feel your pain and fatigue. Hang in there!
 

NK17

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I really hope that if the Cushing's diagnosis is solidly confirmed (maybe by a second endocrinologist) you'll get the right treatment and cure.

Being ill for many years and living alone with no help is inhumane. Facing surgery while surviving with ME/CFS is certainly daunting.

I wish that this is a blessing in disguise and send you all my best thoughts :hug:.
 

alex3619

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I didn't have anything nearly as invasive as often done for Cushings, but around 19 months ago I had surgery for a shattered left ankle. I still have a titanium implant holding the bones together. Recovery for me has been slow, and took longer than expected. I still have bruising and swelling in my left foot, and it still looks like a reject from a manikin factory. Yet I can walk and function as well as my ME allows.

Things can be difficult, but take this as encouragement - treatment for Cushings is accepted in mainstream medicine. You will be treated much better as a Cushings patient than you ever were as an ME patient.
 

Gingergrrl

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@CFS_for_19_years I wanted to respond to this yesterday but didn't have a chance. I wanted to tell you I am so sorry to hear about your possible Cushings diagnosis and know what it feels like when you can't possibly cope with yet another thing on top of everything that is already on your plate. I am glad you are doing testing and maybe even getting a second opinion before you proceed. Best wishes to you and as everyone else said, you are not alone here :hug:.
 

CFS_for_19_years

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Thanks everyone for your kind thoughts. I'm in a better mood now than I was when I first posted.

I didn't have anything nearly as invasive as often done for Cushings, but around 19 months ago I had surgery for a shattered left ankle. I still have a titanium implant holding the bones together. Recovery for me has been slow, and took longer than expected. I still have bruising and swelling in my left foot, and it still looks like a reject from a manikin factory. Yet I can walk and function as well as my ME allows.

Things can be difficult, but take this as encouragement - treatment for Cushings is accepted in mainstream medicine. You will be treated much better as a Cushings patient than you ever were as an ME patient.
I'm sorry to hear about your shattered ankle. That would be a huge setback for anyone, let alone someone already sick. It's good to hear you're walking.

You're absolutely right about diagnosis and treatment for Cushing's is accepted in mainstream medicine. Once a doctor suspects Cushing's there's a flow chart to follow for distinguishing pituitary tumors vs. adrenal tumors before they even start the imaging studies.

At least they give you replacement hydrocortisone if they have to take out both adrenal glands. From what I've read, people can drop a lot of weight after their surgery. I could think of this as radical weight loss surgery and not get too upset about that aspect!
 

CFS_for_19_years

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After having one 24hr urine test for cortisol, my endo thinks it's doubtful that I have Cushing's. The blood work that she ordered the day I saw her revealed other problems (decreased kidney function, subclinical hypothyroidism) that require follow-up.

I appreciate the support of everyone here. My siblings are still at large, probably hoping I will die with a note on my gown for notifying next of kin.
 

taniaaust1

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The blood work that she ordered the day I saw her revealed other problems (decreased kidney function, subclinical hypothyroidism) that require follow-up.
That sounds like ME complications or coexisting stuff which isnt too uncommon with ME (the hypothyroidism).

I have started going into kidney issues at times too (they sometimes are not functioning well), a hospital dr told me my kidneys are in danger. For me its due to my coexisting with the ME POTS. Make sure you dont have POTS as the dehydration this causes, I just pee my fluids out can start to damage the kidneys.

The autonomic system (its this which isnt functioning properly with POTS) controls things like sweating! Some people with problems in this area may sweat heaps or not be able to sweat. Heat intollerance also is worst if someone has POTS.

I wonder if you have had tit table testing for POTS and other kinds of dysautonomia (autonomic problems) done to make sure that this cause is ruled out as far as some of your symptoms go.
 
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CFS_for_19_years

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That sounds like ME complications or coexisting stuff which isnt too uncommon with ME (the hypothyroidism).

I have started going into kidney issues at times too (they sometimes are not functioning well), a hospital dr told me my kidneys are in danger. For me its due to my coexisting with the ME POTS. Make sure you dont have POTS as the dehydration this causes, I just pee my fluids out can start to damage the kidneys.

The autonomic system (its this which isnt functioning properly with POTS) controls things like sweating! Some people with problems in this area may sweat heaps or not be able to sweat. Heat intollerance also is worst if someone has POTS.

I wonder if you have had tit table testing for POTS and other kinds of dysautonomia (autonomic problems) done to make sure that this cause is ruled out as far as some of your symptoms go.
If I went to my doctor and said that CKD is common in CFS they would just say, "Well then, we don't need to run any more tests on you now, do we." I've read that CKD is common in CFS and there are many reasons why that could happen. Drug toxicity comes to mind, among other things.

Once one's GFR (Glomerular Filtration Rate) hits 60 or less, at least by the book, a cause needs to be determined and that involves a visit to a nephrologist, ultrasounds and I don't know what all else. In addition, chronic kidney disease (CKD) often leads to low T3 syndrome. Treating with thyroid medication benefits the kidneys and slows down the rate of decline of the GFR, i.e. treating with thyroid medication (if indicated) could make one's kidneys last longer. At least that's the impression I got when reading.

Thyroid dysfunction and kidney disease
http://www.eje-online.org/content/160/4/503.short?rss=1&ssource=mfr

Preservation of Renal Function by Thyroid Hormone Replacement Therapy in Chronic Kidney Disease Patients with Subclinical Hypothyroidism
http://press.endocrine.org/doi/full/10.1210/jc.2012-1663

Subclinical hypothyroidism is when the TSH is elevated and the T4 is normal. This type of result is a first for me and it's got me perplexed. I have been hypothyroid in the past where TSH has been high and T4 has been low - the usual configuration.

The doctor doing the follow-up is an endocrinologist specializing in disorders of the HPA axis and thyroid. In an HMO there are few of these and she seems to have the respect of other doctors.

Repeat creatinine is scheduled for this week, thyroid retest around December.

If you have access to your lab results, you might see your GFR. If you can see your creatinine results, you can calculate your GFR here:
http://www.mdcalc.com/mdrd-gfr-equation
It's possible to have a creatinine in the normal reference range, yet have chronic kidney disease. Nowadays, all kidney disease is classified by GFR.

Under what specialty do the autonomic specialists practice? Cardiology?
 

Sea

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Once one's GFR (Glomerular Filtration Rate) hits 60 or less, at least by the book, a cause needs to be determined and that involves a visit to a nephrologist, ultrasounds and I don't know what all else.?
I had an under 60 result once. I didn't even know about it until years later when I had changed doctors and he gave me access to all my previous results. It was never retested or followed up on in any way. It has returned to normal now.
Under what specialty do the autonomic specialists practice? Cardiology?
Sometimes Cardiology, sometimes Neurology. It often falls in a gap between the two. I don't think they've quite figured out if the problem originates in the electrical system of the heart or mixed up messages from the brain. It takes an interested specialist to take it on in either field.