Recent adrenalectomy - problems with recovery

Hormones
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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!! 

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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

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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. 

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What is your cortisol level?  You definitely should be calling your endocrinologist.  S/he needs to know what’s going on.

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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.

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Hey Karen.  The same here.  I had surgery on 03,/28. Almost a month ago at rwj nj. I still feel awful.  They gave me 25 mg a day in four days after surgery.  Honestly I thought I would not survive.  My BP dropped to 80/60. Then they doubled the dose to 50 mg a day. I still  feel very weak with lots of joint and muscle pain. I think its either cortisol withdrawal or side effects of hydrocortisone.  I'm going to see endocrinologist this week. Can't wait to go off steroids.  I think that's what make me sick. By the way I think  10 mg is too low. Physiologic dosage is between 15 and 20. You should ask endo. Please let me know . I'm really interested in your situation because I have the same. I'm 4 weeks post op. Right adrenal gland out, feeling terrible. I tapered myself to 40mg a day and feel bad anyway.  So plese keep us updated.  

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

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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

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\hi \sorry you are feeling so rough still.  It is very early days and your body has suffered a major trauma.  It needs time to readjust to the new levels of Cortisol.  Then your Endo will be able to supplement you with what hormones you need.  I have a friend who also had Cushing's and she is not allowed to take steroids, but has Growth Hormone instead.  I had a Pituitary tumour and I have to take 10.5.5 Steroids a day probably for the rest of my life, which is OK by me if it helps me feel OK.  Please let us what your Endo says  and good luck.

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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

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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? 

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

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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

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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! 😊

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Hi Irene,

Oh wow - we are on the same timeline with our recoveries!  I posted above that my endo has put me on a slow taper schedule.  I’m back up to the 50mg day - 25 in the morning and 25 in the afternoon.  I’ll stay on this for 3 more weeks and then down to 20mg 2 x day. I think it’s actually the steroid withdrawal that’s causing us to feel so tired and crummy.  With Cushings, we got used to having high levels of cortisol in our bodies... now it has to slowly adjust to lower levels.  I’m doing my best to take it easy now - not try to do too much. I had the follow up with my surgeon today ... he is at the Mayo Clinic in Jacksonville FL - so about a 2 1/2 hour drive each way from Orlando.  Thankfully I had a good friend to take me ...I was tired but OK on the way up ... could barely keep my eyes open on the way back! Came home and took a nap - now feel like I’ve been run over by a truck ... very tired , weak and muscle aches.  It is frustrating ... but just have to trust that it will get better with some more time.  Take care and please keep in touch!!

Karen

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Thank you Vicky! Yes , I’m back up to a higher level of the hydrocortisone (cortisol replacement). I’ll try a slower taper and see how I do ... from what I’ve heard (with adrenal surgeries), it can take 6 months to a year for the other adrenal gland to wake up and start working again .. some people end up needinf life long replacement.  I also had thyroid surgery back in ‘99 ... so now I’m dependent on thyroid medication and “steroid dependent”! Just thankful that both of things are “fixable” and trust that in time I’ll start to feel better. 

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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. 

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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. 

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IM 4 years post adrenelectomy. I know how scary this can be for you.

It’s important for you to connect to your body (as your the only one who knows you best) 

There isn’t a fine line between Thr normal “I feel terrible” and adrenal crisis. And it can be tricky. 

Remember this: your an addict. You are addicted to cortisol. And withdrawals will be painful. But u less your truly going into crisis if you continually give in and up the dosing your not gonna get better, you’ll continue to be addicted. 

It was the absolute hardest thing I’ve ever went through. It took some time for me to figure out and know the difference between crisis and a normal withdra l symptom. 

Everyone is different in their journeys. And we all go through different obsticals. For me nausea was something I fought daily. I was SO sick and nauseous I couldn’t eat for a year! I lost all my weight plus 20 lbs within 8 mo from the constant nausea. 

It does get better, but remember..:you didn’t get sick overnight and you won’t get better overnight either. It’s a journey. 

Best of luck! 

1 Like
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Hi there,

 I am also 4 weeks post op of having a left adrenalectomy. I am sure I have had the condition for years, however within 2 months when my BP and sugar were uncontrollable and we found a new nodule growing all the parts of the puzzle where finally put together. Long story short, I was accepted to NIH in Bethesda MD. We did 9 days of testing with every test imagined done, they then went ahead and did the surgery, That was 4 weeks ago, I am on 15Mg of HC in the am and 5 in the Pm and I feel just like you. I was seeing pain mgmt even b4 this as I have very bad joint issues and have had many surgeries, now the pain is 4x as bad and we need to adjust the meds to compensate, I am so glad I fount this post and a cushing group on FB as I see there are others just like me, I hate the fact of everyone looking at me saying wow, you look so much better you must feel great and they have no clue. I hope hat my R adrenal wakes up and takes over but it also has nodules so we hope that it does not wake up and go crazy and then have to have that one removed. Everything that you describe I feel almost the same. They tell me it could be months to over a year to feel right... I feel like someone has turned down my voltage or I like to say I used to feel like a car engine doing 25 thousand rpm in neutral and now I feel like 15 thousand rpm in neutral.... I do feel a small difference but now I have no energy to do the simplist things and have no interest in the things that I loved to do along with no appetite and never know how I am going to feel the next day

I hope that you feel better soon

TT In Va