Losing hope - my endo thinks I have Cushing's

CFS_for_19_years

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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.
The GFR can fluctuate a bit and can go down a few points per year. And yes it most certainly can come back up a bit, which is always a relief. From what I've read online, a GFR under 60 should be rechecked once 3 months have passed, and if it's still below 60, a referral to neurology is in order. I'm just reading from the playbook. I don't know what passes as good medical practice these days.

One doctor did explain to me that the rate of change can be more important than the actual level itself. My GFR fell 11 points in 3 months and you can bet I was messaging both my primary care doc and the endo asking for follow-up. I don't know what part medications or inactivity can play. A GFR of 57 is far, far away from needing dialysis though.

I don't have any of the lightheadedness associated with POTS - that seems to be a significant symptom in those who have it.
 
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I too have chronic renal failure. It took a little while to diagnosis because I was dehydrated, rehydrating with IV fluids. However, it is there. I also felt discouraged. I got this diagnosis, along with several more in a short period of time. I have ME/CFS. I guess because the rate of decline is slow, my nephrologist didnt think any workup was in order. I see him for follow up in 6 months time.

As to the endocrine issues. I am impressed with what you are finding reading - re thyroid effect on the kidneys. I saw a new MD who thought I have pan hypopituitarism - I do not. I also was diagnosed with adrenal insufficiency by another endocrine person, and treated with steroids; this because my BP was going too low daily, and I could not stand for 3 months. This whole saga taught me once again the importance of getting to a doctor who understands ME/CFS. So much unnecessary testing, time, frustration, and so on. There are both endocrine and ANS issues in ME/CFS, as you know. I have seen several docs who specialize in ANS disorders over the yrs - what part of the country do you live in? All the best.
 

Gingergrrl

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I have seen several docs who specialize in ANS disorders over the yrs - what part of the country do you live in? All the best.
@joyce.swing I noticed you are in No. CA and I was curious who the doctors are that specialize in autonomic disorders. I am in So. CA and have not found a true autonomic specialist down here. Do you mind sharing the name or sending to me by PM? Thanks for any info.
 

xks201

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Get a saliva cortisol test. That will tell you if you have low or high free cortisol. Each is possible. Get a free t3 and reverse t3 blood test at same time
 

CFS_for_19_years

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Get a saliva cortisol test. That will tell you if you have low or high free cortisol. Each is possible. Get a free t3 and reverse t3 blood test at same time
Thank you for your suggestions. I did the salivary cortisol tests a few weeks ago and I have an evening spike plus I'm at the very top of the normal scale in the a.m. I'm going back to see my endocrinologist to see what can be done about this. In the meantime I'll be taking some supplements to counteract high cortisol such as Seriphos and Holy Basil.
 

valentinelynx

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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
While this ought to be true, sadly, in practice it appears that many primacy care providers (so many aren't doctors these days) either aren't looking at the labs they order or somehow think that Stage IIIA (Moderate, GFR 45-59 ml/min) CKD is nothing to be concerned about. In my job I reviewed patients suitability for outpatient surgery and was appalled at how many came through with a GFR placing them as Stage IIIB (Moderate, GFR 30-44 ml/min) with absolutely no mention of CKD in the patient's chart. I have to believe that PCPs are thinking that high degree renal insufficiency is somehow normal in the elderly! In these folks, an episode of dehydration or exposure to NSAIDs would be all it takes to cause severe renal insufficiency or an episode of acute renal failure.
 

CFS_for_19_years

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While this ought to be true, sadly, in practice it appears that many primacy care providers (so many aren't doctors these days) either aren't looking at the labs they order or somehow think that Stage IIIA (Moderate, GFR 45-59 ml/min) CKD is nothing to be concerned about. In my job I reviewed patients suitability for outpatient surgery and was appalled at how many came through with a GFR placing them as Stage IIIB (Moderate, GFR 30-44 ml/min) with absolutely no mention of CKD in the patient's chart. I have to believe that PCPs are thinking that high degree renal insufficiency is somehow normal in the elderly! In these folks, an episode of dehydration or exposure to NSAIDs would be all it takes to cause severe renal insufficiency or an episode of acute renal failure.
That's terrible!

Do you then add CKD to their problem list and/or write something in their evaluation about their reduced renal function? Emphasize hydration? Say no to NSAIDs?

My own doctor didn't think it was necessary to determine a cause when my GFR was bouncing between 50 and 60. It's now between 60 and 70 so there's a little less to worry about.

I've been spending a lot of time on Twitter and there are a LOT of doctors there - hospitalists, Emergency Dept. doctors, surgeons, anesthesiologists, radiologists, many female doctors. Some doctors even lead Tweetorials (condensed learning). If you want to get started there look for the hashtag #MedTwitter. I think starting a discussion about the neglect of noting a diagnosis of CKD would have lots of interest.
 

CFS_for_19_years

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I don't have Cushing's but it's a long story how my cortisol values were at the upper end of normal. (More later.)

I've become more bedbound lately and haven't left my home since Nov. 2017. I developed severe shortness of that came on over a period of about 2 weeks and I had an episode of severe chest pain that lasted several minutes and sudden pedal edema. I'm not well enough to leave my home and have it thoroughly evaluated although I was able to get a chest x-ray and EKG at my very last visit. It could be a pulmonary embolism just based on my Google skills and other symptoms. I've had some home visits from my HMO (Kaiser doctor) but they can't do echocardiograms or pulmonary tests at home. My O2 levels fall just when walking from one room to another and the doctor saw this on his oximeter which exactly matched my own oximeter when read at the same time.

Regarding the elevated cortisol values: I started taking spironolactone in May 2014, then in Sept. 2016 my PCP wanted me to discontinue it since it could "alter my chemistry" which was vague but I thought he was more or less thinking of potassium and HbA1c elevation. I had been taking it for fibromyalgia pain and elevated blood pressure.

In Jan. 2017 I was diagnosed with hypothyroidism and began taking Cytomel and Armour. We battled about doses and whether I really needed to be on it. He infuriated me so much that I changed doctors.

I started taking spironolactone again in June 2017 under a new doctor who didn't want me restarting it on my own but I explained how it helped some symptoms, etc. Some time after that I read that spironolactone could elevate cortisol. Having a cortisol level that is too high or too low will interfere with T4 to T3 conversion and it will also interfere with the entry of T3 into the cell. I asked my new doctor if he could switch me to eplerenone, similar to spironolactone, except that it will not alter cortisol. He said that he had no experience with it so I just left things as they were.

Eventually I'd had enough fooling around with thyroid meds, blood tests, etc. I asked my doctor again about eplerenone. He still had no experience with it but I pressed him to talk to a pharmacist to get advice on converting doses. By the end of May 2019 I was off spironolactone and on eplerenone. By mid-July 2019 (45 days later) I was having symptoms of hyperthyroidism such as spontaneous sweating and either elevated BP or heart rate (can't remember which now). I tapered off all thyroid meds, had my last thyroid blood test in September which was normal.

My doctor did give me the credit for asking to discontinue spironolactone. Hooray! The second thing that may have helped my thyroid was raising my ferritin level. It was 22 to 55 (low normal) February 2016 to March 2019, then 84 (much better) in November 2019.

I'd like to have thyroid tests again soon. The two symptoms that I have when I'm hypothyroid are lack of peristalsis (no movement after a meal) and dry itchy skin. These are so-so right now but they've been a lot worse.

The other thing that was affecting my TSH result was quetiapine. TSH can fail to elevate in the presence of hypothyroidism and quetiapine can cause hypothyroidism. I had thought quetiapine was causing the thyroid problem at first because I started taking it in May 2015 and it can sometimes take up to four years for hypothyroidism to take place. I'm still taking the same dose of quetiapine. When I was getting tested (TSH, freeT4) I had to keep reminding my doctor that the TSH while taking quetiapine could be suppressed - it's even in the package insert. I was also taking T3 which suppresses free T4. Eventually we got my TSH between 1 and 2 which is where I felt best.

If I ever have to go back on thyroid meds I'll choose levothyroxine (Synthroid - synthetic T4). At least that way I can see what a free T4 value would look like without dealing with it being suppressed by anything with T3 in it like Cytomel or Armour. In Feb. 2019 I stopped Armour and started levothyroxine but stayed on Cytomel. I was in the process of lowering my dose of Cytomel and raising levothyroxine when I stopped them altogether in July 2019. Staying off anything with T3 in it would be important to me because I'd like to see what an unsuppressed free T4 value would look like and that may not be important for anyone who is not taking quetiapine (TSH can fail to elevate in the presence of hypothyroidism).
 
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Tella

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I don't have Cushing's but it's a long story how my cortisol values were at the upper end of normal. (More later.)

I've become more bedbound lately and haven't left my home since Nov. 2017. I developed severe shortness of that came on over a period of about 2 weeks and I had an episode of severe chest pain that lasted several minutes and sudden pedal edema. I'm not well enough to leave my home and have it thoroughly evaluated although I was able to get a chest x-ray and EKG at my very last visit. It could be a pulmonary embolism just based on my Google skills and other symptoms. I've had some home visits from my HMO (Kaiser doctor) but they can't do echocardiograms or pulmonary tests at home. My O2 levels fall just when walking from one room to another and the doctor saw this on his oximeter which exactly matched my own oximeter when read at the same time.

Regarding the elevated cortisol values: I started taking spironolactone in May 2014, then in Sept. 2016 my PCP wanted me to discontinue it since it could "alter my chemistry" which was vague but I thought he was more or less thinking of potassium and HbA1c elevation. I had been taking it for fibromyalgia pain and elevated blood pressure.

In Jan. 2017 I was diagnosed with hypothyroidism and began taking Cytomel and Armour. We battled about doses and whether I really needed to be on it. He infuriated me so much that I changed doctors.

I started taking spironolactone again in June 2017 under a new doctor who didn't want me restarting it on my own but I explained how it helped some symptoms, etc. Some time after that I read that spironolactone could elevate cortisol. Having a cortisol level that is too high or too low will interfere with T4 to T3 conversion and it will also interfere with the entry of T3 into the cell. I asked my new doctor if he could switch me to eplerenone, similar to spironolactone, except that it will not alter cortisol. He said that he had no experience with it so I just left things as they were.

Eventually I'd had enough fooling around with thyroid meds, blood tests, etc. I asked my doctor again about eplerenone. He still had no experience with it but I pressed him to talk to a pharmacist to get advice on converting doses. By the end of May 2019 I was off spironolactone and on eplerenone. By mid-July 2019 (45 days later) I was having symptoms of hyperthyroidism such as spontaneous sweating and either elevated BP or heart rate (can't remember which now). I tapered off all thyroid meds, had my last thyroid blood test in September which was normal.

My doctor did give me the credit for asking to discontinue spironolactone. Hooray! The second thing that may have helped my thyroid was raising my ferritin level. It was 22 to 55 (low normal) February 2016 to March 2019, then 84 (much better) in November 2019.

I'd like to have thyroid tests again soon. The two symptoms that I have when I'm hypothyroid are lack of peristalsis (no movement after a meal) and dry itchy skin. These are so-so right now but they've been a lot worse.

The other thing that was affecting my TSH result was quetiapine. TSH can fail to elevate in the presence of hypothyroidism and quetiapine can cause hypothyroidism. I had thought quetiapine was causing the thyroid problem at first because I started taking it in May 2015 and it can sometimes take up to four years for hypothyroidism to take place. I'm still taking the same dose of quetiapine. When I was getting tested (TSH, freeT4) I had to keep reminding my doctor that the TSH while taking quetiapine could be suppressed - it's even in the package insert. I was also taking T3 which suppresses free T4. Eventually we got my TSH between 1 and 2 which is where I felt best.

If I ever have to go back on thyroid meds I'll choose levothyroxine (Synthroid - synthetic T4). At least that way I can see what a free T4 value would look like without dealing with it being suppressed by anything with T3 in it like Cytomel or Armour. In Feb. 2019 I stopped Armour and started levothyroxine but stayed on Cytomel. I was in the process of lowering my dose of Cytomel and raising levothyroxine when I stopped them altogether in July 2019. Staying off anything with T3 in it would be important to me because I'd like to see what an unsuppressed free T4 value would look like and that may not be important for anyone who is not taking quetiapine (TSH can fail to elevate in the presence of hypothyroidism).
Ok thanks! How’s your chest pain n lungs now? What did the X-ray show? Did u get to the bottom of it? All cfs patient should check for Cushing and Addison really... are u still severely ill?
 

CFS_for_19_years

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Ok thanks! How’s your chest pain n lungs now? What did the X-ray show? Did u get to the bottom of it? All cfs patient should check for Cushing and Addison really... are u still severely ill?
Thanks for asking.

The chest pain was a one-time thing. It was very intense. Ordinary folks would have gone to the ER but I was in bed and trying to get to sleep when it happened, and I wasn't about to get out of bed then or the next day to get checked out.

Lungs: I only breathe normally when I'm NOT talking and not moving. For instance, I can sit and breathe normally as long as I haven't walked in the last ten minutes. If I talk I have to slow my speech to take a breath. I've got a walker with a seat that would help me slightly to mobilize if I had to leave my home, i.e. in case of fire.

X-ray: normal

I never got to the bottom of what is causing my severe shortness of breath. The last time a doctor visited me here he said I should probably see a pulmonologist and have some pulmonary tests done. Lungs and heart sounded normal to him.

I think a morning cortisol to rule out Addison's disease for CFS patients isn't a bad idea but there are a lot of other chemical abnormalities and symptoms that go along with Addison's. I know someone with Addison's and he was fainting a lot before he finally got diagnosed.

I'm not sure if screening for Cushing's is in order for all CFS patients. It would involve two consecutive midnight salivary collections and if that's positive the case should be referred to an endocrinologist. I don't recall all the other symptoms but I think weight gain and elevated blood pressure fit the picture.

I'm still severely ill (that change happened Oct. 2017) and sometimes don't get up until 5 or 7 pm then go to bed around midnight. I do get a boost from the rare cup of coffee if I happen to get up in the morning. That's how I'm present today. I consider myself to be severe due to the level of fatigue and the limitations imposed by my shortness of breath. If I were to be transported somewhere I would want to do it lying down, not sitting up. The ride sitting up could do me in. There is no one I can count on who would transport me lying down.
 

valentinelynx

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Do you then add CKD to their problem list and/or write something in their evaluation about their reduced renal function? Emphasize hydration? Say no to NSAIDs?
No, because they weren't my patients. They were being screened as possible patients at the surgery center I was working for. There is no way for me to add a comment on another doctor's chart, nor would it be appreciated! Those who wanted to pursue surgery were asked to get further work-up of their renal function.