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Recent adrenalectomy - problems with recovery

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KD003
KD003

Hi...my name is Karen...

I am 3 weeks post op from adrenal surgery. -  having problems with pain and not feeling well. I’m hoping to connect with other’s through this forum who might have gone through a similar experience. ..

To condense my story,  after many months of symptoms and testing, I was finally diagnosed with Cushings Syndrome last February. I had a 4cm adenoma on my right adrenal gland that was producing excess cortisol. My surgery was done laparoscopically at the Mayo Clinic in Jacksonville on 3/30. I was only in the hospital a couple of nights and have been back since home Easter Sunday.  The first 2 weeks were OK - I was a sore , but had pain medication, took it easy, and rested. They put me on Hydrocorisone with a taper schedule : 25mg 2 x day for 1st 2 weeks, and then 20mg 2x day for another 2 weeks , then down to 10mg, etc.

I started feeling unwell (more tired, achy and emotional) - and having more pain on my right side around to my back at about the 2 weeks ...I was out of the pain medication- which they said I should no longer need at the this point. I was feeling so poorly last week that I went to the ER on Tuesday (it was too long of a drive to go back to Mayo). They did some tests, gave me a 100 mg shot of steroids and 3 day rx for more pain medication.

This helped... and I felt a better until Friday. Once again out of pain medication. I tried to rest, take Advil , Tylenol & hot showers. By 2a.m. On Saturday, I was so miserable that I went back  to the ER.  They did some lab work , CT scan and everything came back “normal”.  So home again with another 3 day rx of pain medication.  Then last night , I took a pain pill at about 11:30 and went to bed. Woke up at 3a.m feeling awful.  Pain on my side and mid-back, flushed, headache, nauseous, chills and felt very weak and lightheaded. I live by myself so this was kind of scary ... I tried to calm myself down and took another pain pill. Laid back down until 6:30-7 - when I woke up feeling even worse. I called 911 and was taken to the ER by ambulance.  They gave me IV fluids , medication for nausea, more pain medication, labs and another CT scan. Once again, everything  was “normal”.

 I asked for another shot of cortisol since that seemed to help so much last time ... 

I’m back home now and feeling better - just very tired.  It is hard to tell - but it seems to me like I’m having a hard time with cortisol withdrawal ... and maybe need a slower taper ? Unfortunately the doctors at the ER know very little about Cushings or adrenal insufficiency  - and could  really only rule out a major problem with my organs or an infection (and treat my symptoms).

 I’m calling my Endo at Mayo tomorrow to ask for some help ... I don’t think it’s normal to feel so sick - but can’t keep going to the ER every few days!!  

So I guess my questions would be: 

1) has anyone else experienced post op pain or problems with cortisol levels?

2) how can you tell between the difference between normal cortisol withdrawal and a “crisis”?  (and what kinds of things can cause a crisis)?  Thank you so much for taking the time to read my post... I didn’t mean to go on for so long!! 

0 likes, 25 replies

25 Replies

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  • camilla123
    camilla123 KD003

    Posted

    HI Karen, 

    I’m just waiting for surgery in my pituitary gland. I suggest you join the Facebook group Cushings UK, it’s full of people like us all at different stages and people know a lot about it all on there! Hope you feel better soon! 

    X

    • vicky61456
      vicky61456 camilla123

      Posted

      Hi Camilla I am somewhat disappointed that you are recommending someone to go to the Cushings Facebook page.  There are other websites and I have tried to make this one as useful as possible.  There are many of us on here who have experienced Cushings and we hope to be able to help.
    • KD003
      KD003 camilla123

      Posted

      Thank you Camilla! My endocrinologist has put me on a slower taper schedule... so now I’m back to 25mg 2 x day.  That seems to help but I’m still very tired and have the muscle aches and weakness.  From what I’m starting to understand, this is normal ... my body has been used to high cortisol, and has to adjust to the lower levels. I’ll stay on this for the next 3 weeks and then go back down to 20mg 2 x day for a month , and continue down from there.  In the meantime, I’m trying to go with it ... realize I need more rest / sleep now - and that things will slowly get better.  I wish you all the best with your surgery - take good care!

      Karen

    • Noam
      Noam KD003

      Posted

      Hi Karen,

      I was diagnosed with Cushing about a year and a half ago. After many tests, they found a tumor , 3-mm on the hypophysis gland.

      My endo put me on 30mg a day of hidrocortisol ... and every 3 months readused the amount by 5 mg.

      At the first 6 months I felt pain all over one I reduce the hidrocortisol...

      After 9 months the reduce wasn’t so bad ... A year and a half has past and I’m still taking 10 mg of hidrocortisol ... filing better but tailed...

      I know that it could take up to 5 years until everything is back to place...

    • vicky61456
      vicky61456 Noam

      Posted

      Hi Although I had a Pituitary Tumour rather than an Adrenal tumour the hydrocortisone dosage is much the same.  It is 5 years since my op and I am still on 10,5,5 Hydrocortisone and maybe on it for life, but the benefits are so worthwhile! You will get better but it is a slow process. Soon you will be feeling great again!  Take care and keep in touch.
    • Noam
      Noam vicky61456

      Posted

      Hi Vicky,

      the  Pituitary  gland and hypophysis gland are the same gland.

      5 years and you are still on 20mg Hydrocortisone a day? Have you tried to reduce the dose of hydrocortisone, and that did not work for you?

      What about the blood tests? Are there signs of the Pituitary gland activity?

      I'm doing blood tests every 3 months ...

      In contrast to previous tests, in the recent blood test, the results of ACTH and cortisol were evaluated, but very low.

      So the endocrinologist reduce the Hidrocortizone to 10 mg a day, in order to make the gland "wake up". Because as long as the body has enough cortisol (in this case the hydrocortisone) the gland will not try to produce alone...

      my I ask what was your age when you was diagnosed? And what was the reason for the suspicion that this was Cushing?

      I was diagnosed when I was 32 years old.

      But when I look back, some of the symptoms were already there six years ago ...

      There was an increase in symptoms after pregnancy and childbirth. Then, due to lack of PMS, I was referred to an endocrinologist....

    • vicky61456
      vicky61456 Noam

      Posted

      Hi I was just trying to let you know that my tumour was on the pituitary gland near my brain.  I have been told that I will probably be on hydrocortisone for life. I had for some time been putting on weight around my waist, had the buffalo lump on my back and was generally aching all over. My GP tested me for a lot of different diseases as he had not seen a Cushing's patient before.  Then I was watching Doc Martin on TV and he mentioned that excessive hairiness and excessive sweating were also signs of Cushing's so I went back to my GP and was tested for Cushing's.  I also had the awful stretch marks.I was 59 when I was finally diagnosed.

  • Coc87
    Coc87 KD003

    Posted

    Karen u poor crator, ur havin a rough time. I had my left adrenal removed an but like u I was sore following surgery but pain meds helped an for roughly two weeks I was ok, then I was told to stop my steriods (like a fool I just stopped) I should have known better an tapered down. But then I crashed ended up in a&e dehydrated an so nauseated! So fluids, sick meds an home. I was actually feelin so unwell at that point, An the doctor told me that’s jus how I would be for at least 8weeks. I was sore following surgery itself, but I ended up I jus stopped takin pain meds cause I felt so ill an couldn’t stomach swallowing them. The less pills the better. Eventually I got bloods done by my endo doc an they told me I needed to go back on steriods. I was on 20mg in morn an 10mg in the evening. For few days it made no difference so I rang and said I was still I’ll an they made me increase. I felt so much better. Perhaps ur other adrenal hasn’t started working yet an u need the higher dose of steriods for a wee wile to feel better. I’m now down till 10mg in morn an 5mg in the eve. No pain, the odd twinge but nothing compared. An I feel well but not 100% but from wat I was it million times better. For me it was rough following surgery, but I was always told it would be. But one day I jus seemed to turn a corner. It not the same for every one cause our bodies all behave in different ways. But u will get thru it. If u have a nurse specialist link in with them an get them to speak to ur endo. Get an appointment even with the doc. It ok to hear an read everyone stories on these pages but professional advice and guidance is the key. I hope u be ok. If we can help we will. But remeber u could b different an turn the corner quicker than me. Jus be easy on urself, ur body has baically been floored by a bus. So be kind to urself. I’m 5months post op an stil buildin my stamina back. It long process but well worth it when u see an feel the benefits. 

    • irene64333
      irene64333 Coc87

      Posted

      Hello, did you have joint and muscle pain  after surgery? If yes when did it stop? Thank you 
    • pam41781
      pam41781 irene64333

      Posted

      I’m almost 3 months post surgery and have lots of leg/hip muscle pain & weakness.  I’d like to hear from others that experienced muscle & joint pain and how it progressed as well as length of time

    • Coc87
      Coc87 irene64333

      Posted

      Hi Irene. Yes I think I did, I was sore all over, but I would say it passed possibly 3-4 months, sometimes I would get odd muscle pain still but my body doesn’t feel heavy the way it use to an I can move better an squat now. Still feel I’ve long way to go regarding strength. But I don’t require pain killers anymore or do I have the same pains an back pain I had wen I had Cushing’s. It does get better. But jus takes time unfort. But wen ur experiencing it u think it never gonna end. It does get better tho. I’m now 5months post op. I’d recommend heat, or baths, or them rubs u can buy. I would have used an still odd time aloe Vera heat rub an aloe MSM gel. Def helped me. Also found reflexology helped. An gentle walks. Hope this helps
    • irene64333
      irene64333 pam41781

      Posted

      God, I barely can move.  Yesterday I went shopping,food shopping because I had to  with my son, I couldn't wait to sit back in my car. I feel terrible trust me. Today I saw my endo, for the first time since surgery.  She says it's normal because it's cortisol withdrawal things  also she says joint and muscle pain most of the time are due to hydrocortisone  replacement.  She assured me it would get better after I'm off steroids. She gave me hope. Currently I am on 40 mg of hc, she says she will let me taper it by 5 mg in couple weeks. Are you taking any steroids? 

    • irene64333
      irene64333 Coc87

      Posted

      Thank you very much for your response.  I definitely want to try reflexology 
    • KD003
      KD003 Coc87

      Posted

      Thank you so much! It definitely helps to connect with other people who have been through this - and to know / expect that it will be rough for awhile! You were exactly right - a lot of my symptoms last night were due to low cortisol... even the pain / ache on my right side and low back (flank area).  The pain medicine was not helping - but a shot of 100mg helped relieve most of those symptoms. The problem is that doing that sets me back ... the whole point is for the body to get used to the lower cortisol.  I’m just trying to understand what would cause an adrenal “crisis” vs. just normal cortisol withdrawals...

      It is good to know that you got better with time (I can’t believe they let you go with no cortisol replacement)!  I think it can take awhile for the other adrenal gland to “wake up” and start working again ... I’ll just take it one day at a time and trust I will eventually feel better.  I had the follow up with my surgeon today - everything looks good with my incisions.  I’m finally of the prescription pain medication, but he did give me RX for Naproxen (prescription strength aleve). 

      Thanks again for your encouragement and support! 😊

    • KD003
      KD003 irene64333

      Posted

      Hi Irene,

      I can relate! It seems like I can do one or two things and then I’m exhausted again ... not quite sure all the reasons.  I think the cortisol withdrawal is part of it - and maybe also recent surgery.  This is the first time I’m hearing that the hydrocortisone can give muscle and joint pain. I’ll ask my endo about that too - won’t see her until 5/10.  

      Maybe try a hot shower or bath ... I like the idea of reflexology too!  Get some good rest ... that should help. 

    • Coc87
      Coc87 irene64333

      Posted

      Irene I’m still on steriods 5months post op, 10mg in the morn an 5mg in the evening. I tapered slowly myself. It a very strange one, so our bodies had so much steriod naturally then we have surgery an feel so ill but are our on steriods now. So we come dependant on them. I know u want to come off them, we all do but our body does need some steriod to function so don’t b annoyed that u are on them for a while. Our bodies have had such a battering with high levels it’ll just take time to come right. But u will feel better even wen ur on the steriods. Definitely get the reflexology or if u can tolerate a massage, something that is relaxing to u. I use to find it difficult to turn in the bed or gettin in an out of car was difficult, now I do all that with out thinkn again. It great. Small things! Things we took for granted. Wen u see them, u will know ur body is on the mend but it will take time. 
    • Daviddunn747
      Daviddunn747 Coc87

      Posted

      noting your comment 3 yrs ago.

      how are doing today?

      I had a adrenal gland removed 6 months ago and am still having problems. Still on Steroids and blood pressure medication. Which I took neither prior to discovering a tumour on one of the glands.

      I also had an abdominal hernia taken care of at the same time.

      Within 2-3 weeks of my surgery I started having problems. my potassium levels escalated as well as my blood pressure so I was prescribed both steroid and blood pressure medication to control the levels. And oddly I started experiencing severe pain in my left leg and both knees, primarily my left knee. I was told by the physicians this was just a coincidence regarding the leg pain. They sent me off to neurologist and orthopedic surgeons who determined I had nerve damage unrelated. It is going on six months and I still am experiencing severe pain in my leg and I can hardly bend my knee. I also am very tired and feel nauseous. It seems like my condition is getting worse. I am at a loss and not sure which direction to go at this point. I feel my medical doctors are not doing what they should be because I am told this shouldn’t happen and they want to send me to physical therapy which I think may be a waste of time I don’t know. Any suggestions would be greatly appreciated. Thank you.

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