Should I trade Cushings for Addisons
Posted , 4 users are following.
I was diagnosed with Cushings Disease in Sept 2009 in Oct 2009 after a 15 hour surgery a macro adnoma was removed from my pituitary gland. Surgical cure that lasted close to 5 years. second tumor not so convenient....inoperable. tried (at that time) the experimental focused linear radiation. The radiation successfully managed to stop the tumor from growing unfortunately it continues to function.a new tumor was just found in my cavernous sinus also functioning. also inoperable. Radiation is not an option as you can only receive radiation in a spot once. they have offered to remove both adrenal glands, curing my cushings but causing adrenal insufficiency that will result in addisons. has anyone had or heard of a similar circumstance. can anyone give me their advice on if i should trade cushings for addisons or not
0 likes, 20 replies
cycliccushings candia03996
Posted
Dear Candia
My advice on this is to research Addisons disease and all of the symptoms that that illness entails and I would make sure I understood what your prognosis is in regards to the 2 tumors in your head. How those tumors will affect you if you remove your adrenal glands. Also make sure you understand what will happen
If you do nothing. You are dealing with hormonal imbalances either way you choose, I'd weigh the pros and cons of each choice and try to pick the one with the less medications needed.
I know this is overwhelming and you are having to pick one awful choice from another awful choice. Please look for other responses here as I'm just one opinion.
elizabeth62717 candia03996
Posted
I have been having test, after test, after even more tests, for the past six/seven years! They know for a fact that I am massively over producing Cortisol, they know BOTH adrenal glands are pumping it out, but they cannot figure out why. Two CAT scans and an MRI, have failed to find anything on the pituitary, so am waiting now for a procedure whereby they're going to take a blood sample from there just to make sure. Long and short is they just might decide to remove both adrenals anyway. My consultant informs me that daft though it sounds, it is easier to treat a body lacking adrenals, than it is to treat Cushings. So, on that basis I would say go for it. They can treat Addisons with more ease and fewer side effects.
candia03996 elizabeth62717
Posted
Is the procedure your referring to called posterial sinus sampling?
Guest candia03996
Posted
It will cure you but then you'll have to be on medication for the rest of your life , if there is no other option I would take it , you'll probably struggle with low body weight instead of excess body weight . Addison's symptoms are nausea , vomiting , weight loss diarrhoea loss of body hair (as opposed to gaining it with Cushings ) but again your meds would be adjusted accordingly . The thought of being reliant on meds to keep you alive essentially is a very scary thought and not to be taken lightly . You will need to weigh it up . I however would probably do it just to get a cure . Again that is my opinion I'm just very frustrated trying to get a diagnosis still so it's probably that I just want rid of it all x all my love and have a good think it is your body and you know how you feel x
elizabeth62717 Guest
Posted
I have been suffering with the weight gain, and progressive weakness now for over three years. Not to mention type II (which I have been told will go, yay!), and high blood pressure (ditto). I am virtually house bound, and although I live a two minute walk from our town centre, have not been able to walk there for two years! In fact, some days getting from bedroom to lounge is a chore. So the pros definitely outweigh the cons. I have been told that I will be given a sort of 'epi pen' type gadget should I find I need extra medication at any time. As for 'low body weight' I first have to lose the huge belly I gained through the Cushings. Lol. All in all, and taking everything into consideration, I definitely think I will be better off. No more pain, no more weight, no more Type II, no more weakness, no more 'goatee'. What's not to love.
cycliccushings Guest
Posted
Nails
Really is it true you'd lose weight, man I would do almost anything to be skinier. The Cushing took away my image completely at age 38. I'm 65 now. From 110 lbs to 276 lbs in 6 months, I weigh 221 lbs on a 5 ft 0 in frame.
I'm facing a rare issue also as the 2nd pituitary surgery was in my of 2016 ..after 27 years.
Now I've had hormone tests and my ACTH level is 62, which it was 46 when they operated in 2016. That ATCH level being high and everything else being low now suggests another tumor, a etopic tumor, either in my lung, pancreas, hypothymalus, adrenals or glands in my throat. I'm just weary, and now I get to deal with a Endocrinologist, which I normally loath, because of their arrogant and condescending attitudes. I'm praying my neurosurgeon, refers me to one that I can work with, that will listen to me. So I'm also playing the waiting game. Have good days and bad days, I suspect that's due to the up and down secretion of ACTH into my system. I'm so fatigued I get up and within 2 hours I'm asleep again, just done in. I'm praying that all of us here are going to get the answers we need to conquer what's wrong and see healthier days.
cycliccushings elizabeth62717
Posted
Elizabeth
Man I really agree, if I could just lose weight that would be the main issue, that pro would be on top and knowing I would even lose 40 lbs I would be thrilled.
Maybe God is going to reverse the weight issue after almost 30 years of hating who I am. So now I'll be praying they remove the adrenals...lol.
elizabeth62717 cycliccushings
Posted
I am so lucky as every endocrinologist I have had dealings with has been great. One, would create drawings on a white board and explain every little aspect, another actually went on holiday, but had my test results faxed to him, then phoned me with the results. They all bend over backwards to explain what is happening. Funnily enough they still 'suspect' there may be another nodule somewhere 'calling the shots' problem is they are so difficult to find. People say that the human body and how it works, is amazing. We are here to prove that it does not 'always' work properly.
candia03996
Posted
Thank You Thank You ladies! I absolutely agree the weight gain is aweful! People's lack of understanding is a tough one too. But my worst symptom is memory loss. (Names, numbers and dates are the hardest for me to remember) has anyone found memory loss a problem and if so did you find any way to reduce that symptom?
Presently my Cushings is being controlled as best they can by Ketocontozole a very powerful antifungal antibiotic that has been found to reduce cortisol. It's recommended to only take ketocontozole for fourteen to a maximum of twenty one days as it is very hard on your organs. Ive been on different doses of it continuously since feb of 2014, I'm currently on maximum dose. My body can no longer handle it😔I have suffered and been hospitalized from staphylococcal infections because the ketocontozole and the Cushings both lower my immunity. My liver and kidneys are suffering and my osteoporosis is progressing. At this point the lesser of two evils looks to be Addisons. Even with my adrenals gone this new tumour could grow, they will both still secreate ACTH and new tumour could develop but with no adrenals to over produce no Cushings is possible but their is still other concerns The only ones who can truly understand the pain, devastation and frustration of Cushings is another person with Cushings and although a permanent Cushings cure is very appealing I'm so very scared to have to learn, accept and control/treat another disease. I absolutely love my endocrinologist even though she's 3 hours away she's totally worth the drive. I've been googling, researching and inquiring everything and anything I can find about Cushings and Addisons. And it looks like my Drs are right when they say this is my only option left. Removing the tumours isn't possible nor is radiation, the medication is slowly killing me, the surgery could kill me, I don't even remember what normal feels like anymore. Sometimes I think that it's not as bad as I think that my mind is playing games with me and reality. Then I wake up from a night of not being able to actually sleep in a pool of my sweat in so much pain I'm unable to move and I realize this is just going to keep getting worse😭😭
elizabeth62717 candia03996
Posted
as for the memory thing, I have put that down to an age thing, words disappear between my brain and my mouth, grrrr.
like you I frequently think to myself that this condition is not too bad really. But then I go to stand/walk, and realise it is yet another of gods tricks, or maybe Loki is to blame?
Guest candia03996
Posted
You ladies are having a tough time still! I keep hoping if I finally get a diagnosis (it seem most likely pituatry ) that I'll get surgery boom and feel better and all will be right in the world. I know it is unlikely that this will be the case but it's what I'm hanging onto anyway .!lol I can't believe how endos can be so difficult all the time ! even when diagnosed you have to fight and fight to get them to fix you! I have heard this a lot and it's soul destroying . I personally hate endocrinologists they are arrogant and condescending I agree , or quite frankly can't be bothered ! I don't think I've got the fight to continue like you ladies are doing still fighting even after diagnosis yous need a medal really ! But I know that's not a choice it's been forced upon you . This certainly ain't as treatable as it sounds x
candia03996 Guest
Posted
I'm so sorry your endocrinologist is difficult. I love mine but do find it discouraging when she dismisses other health issues I'm dealing with do to the Cushings, tumours or medicine in particularly my pain and depression she really ignores the symptoms that are treatable by my family physician or pain specialist because they are not her "specialty". Although thankfully the communication between my Drs is excellent.
There are moments, days and sometimes even weeks when I'm not sure I can keep fighting but despite my Cushings I love my life so much. My family, my friends, my job, my dogs, my house. I love living. And I firmly believe that everything happens for a reason and that we are stronger then we think or expect. Try your best to stay positive.
As for Cushings being treatable....in my opinion it's not! They seem to be able to control it for periods of time but more often then not I hear about reoccurrence. And after 8 years diagnosed and two reocurrences I know my body is atleast 20% weaker each time I complete a treatment. I also know that what Cushings looks like on paper (test results and numbers) and what Cushings is in reality are two very different things.
Guest candia03996
Posted
Yes candia03996 I was wondering have you got any numbers of your lab results specifically morning cortisol . Hope you don't mind me asking as it would be helpful for me in comparison to my own as yours is pituatry also and that can vary a lot compared to adrenal source . Also if you are U.K. Units will be the same in the states it's done differently. I was told my cortisol was normal twice when it was note . So trying to be my own doctor over here lol !
candia03996 Guest
Posted
I am in Canada and here they measure cortisol in the nmol /L.
Normal range for 8 am cortisol is 170-635 nmol/L. We can't get mine below 810. When I was first diagnosed my number was 1381.
There are several different ways to test cortisol levels. Any one could show a false negative or false positive none are 100% accurate all the time I would suggest requesting a Sylvia test as they are fairly reliable. There are other tests as well.
Good luck
Guest candia03996
Posted
Hi thank you so much for replying! Yes it's nmol here to mine was not as high as that but was high at 687nmol and I was told it was normal when it wasn't the thing is I know this is cyclic and was surprised when I saw that result because I was having a good day in regards to the way I was feeling so if they caught me when I blow up like a balloon and can't construct a sentence I wonder what the numbers would be , but I feel I am high at night so I think salivarys would definitely be helpful for me . I am also curious if anyone developed the Cushing itchy rash covering body ? I developed this at the beginning when all the excess hair and symptoms suddenly appeared . It was completely covering my body but did go a couple of weeks later .I knew it was related to what was going on but didn't know what till I did a bit of digging . Curious no one seems to mention this ?