Just diagnosed with Cushing's

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I am newly diagnosed, only took 8 years! Mine is apparently a result of using steroids on an off, injectables, topicals and orals. Doctors have blown me off forever!  I have read your posts and am glad you are all on the mend. It does seem like this will be a difficult recovery. I am still trying to figure out what's next. Bloodwork is all that is happening right now. Of course stay off steroids. I believe steroids were prescribed to put bandaids  on my other symptoms that were actually caused by Cushing's . My symptoms seem to be getting worse. Does anyone know how long it took before the buffalo hump showed ? I recently discovered mine, googled it, went to an Endo, Cushing's was confirmed. I am too am concerned about how long or if a reversal can be expected. Has anyone else had Cushing's caused by steroids? I

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  • Posted

    Hi Jane,  I hope there is someone else who has Cushings as a result of steroid use.  That was not my case.  The buffalo hump will go but i its own time.  Your body has been badly damaged by Cushings but you will recover very slowly but you will.  Depending on what damage has been done you may have to be on some tablets for a while but I don't know how they will trest you as yours was caused by steroids.  It is as you know a long hard road to get a diagnosis and a hard road to get better but you will.  I am really glad you contacted us and I am sure that others will reply.  We are always here to listen.  Vicky
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    • Posted

      Thank you Vicky for the glimmer of hope. Right now I'm just trying to process it. I think when I found the hump is what sent me in the right direction. Doctor told me it was treatable but based on the standing blood orders, it looks like it will take a very long time. How long have you been dealing with this and are you getting better? They say this is a rare syndrome.....I think not. Again, thanks for your encouragement ,it does feel better knowing I am not alone.
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    • Posted

      Hi Jane,  I was eventually diagnosed in 2012 and had the tumour removed from the Pituitary Gland in Dec that year.  Unfortunately I caught an infection which was diagnosed by my wonderful GP but not paid any attention to by anyone else.  Eventually was taken back to Bristol to have the operation re-done.  I am feeeling a lot better but still on tablets for Thyroid and Diabetes Insipidus.  This is nothing to do with sugar but means that I drink a lot during the day so that I do not get dehydrated and then a tablet at night to stop me wee-ing!!  All I can say is listen to  your body.  if you want to sleep do.  Don;t be shamed to be tired.  Your body has had one hell of a battering.  Look forward to getting some treatment and getting back to being you!  I will be very interested to see how you are treated  They say we Cushy's are rare but I think that is because most GP's don't have any idea what it is.  Take care.
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    • Posted

      Vicky,

      Sorry about the infection, I'm sure that was a setback! That surgery must have been a bit scary for sure.  Was there long term damage from the infection? Why is it so hard for everyone to be on the same page.  Are the thyroid and diabetes issues a result of the Cushing's ?  It's funny that you mention the sleeping thing....that is one of my newer symptoms.....I have trouble staying asleep for the last six months, wake up burning up all the time ( different from regular hot flashes ) very restless. I'm so exhausted, when I feel  the urge to sleep, during the day, of course I can't because everybody else needs me to be somebody else.  I am currently taking care of my Mom, stroke, dementia and a whole slew of other stuff. My 13 year old is killing me while he goes through puberty ☺️ And my husband thinks I'm just lazy and unorganized.  I am already old, all this makes me feel really old. Thanks for giving me permission to own what I have been experiencing. People just want to view you as a hypercondriact, if they really listened they could be much more helpful.  Thanks for being help here Vicky! I do hope things go well for you too!

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    • Posted

      Hi Jane,  To be honest yes the infection did have a lasting effect, mainly due to the infection being ignored for so long and the antibiotics that were eventually poured into me.  I am much slower and have lost part of my peripheral sight which means I bump into things and knock things over.  The night sweats are all part of the Cushings symptoms too.  You are very important to everyone I understand that but you are most important to you.  Whatever anyone else thinks or feels you need some me time.  If you can't have a stay in bed duvet day go for a short walk or anything to let you and your mind rest.  Cushings is a truly horrible thing to have and you need the support of someone close to you.  You say you are old already do you mind me asking how old you are?  I am now 61.  Take care and please rest.
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    • Posted

      Vicky,

      I was 58 this past July, been feeling older for a long time. I have a 20 year old and a 13 year old . He was adopted, what a joy but my biggest challenge yet. ADHD, Aspergers and puberty 😳.

      Those antibiotics can really mess with you.  All this time ( symptoms ) I was convinced that I had Candida from antibiotics. Now I realize it was probably all Cushing's .  Again doctors blew me off. I use a lot of natural herbs now to fight infections. I am trying harder to make it known that I can't "be all that " to everyone. You are right , it is time for some me time.  Walking has been a challenge for a few years now, I do now believe the result of Cushing's also. I had a lot of unexplained pain in both feet and then I broke the right foot.  Cushing's and weak bones! This past year I was treated for planter faciatis ( which is where more steroids came into play) nothing worked. Who knows! 

      Im sorry about the vision issue, that can be very bothersome and make it difficult to drive. My brother, who I have also been taking care of was diagnosed with Stage 4 Prostate cancer a couple of years ago ( what a story that was). He has a tumor on the bone impacted around his eye and sinuses. Caused a lot of permanent damage. He has the same problem with his periphial eye site .

      Thanks again for the advice. Same for for you too, I hope you take time for yourself! Did you ever regain any of the lost energy ? A lonely beach sounds good to me! 

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  • Posted

    hi Jane what treatment are you getting for cushings if its causes by steroids x
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    • Posted

      Hi Jazzyanne,

      So far I have had no actual treatment. I was told not to do any steroid, which my last round with those was in October. I need to have a blood draw every four weeks at around 8:00 am. I believe the doc is looking for a certain level of Synthetic Glococorticoid. Then there will be another type of blood test and again looking for a certain level of ACTH and Cortisol. The doc then decides when the right time is to try and wake up my Adreanels. She mentioned using Hydrocortisone for that. The original blood test order is standing for a whole year. In the meantime, my symptoms are getting worse. This doc ( she won award for best doc in her field) claimed that mine is treatable but after reading the outcome for these other women it feels pretty grimm. I can not believe how doctors over the years have blow me off, I can only imagine how many others are walking around with all these symptoms ( exact same even if caused by steroids) and have no idea. These symptoms don't all show up at once, it is over years.  Sorry so chatty, I'm just still in shock.  What is your situation??  I'm sorry you have to go through this.

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  • Posted

    My you do have a lot of responsibility!  Interesting what you said about antibiotics.  I am always trying to find a common denominator for people who get Cushings and prolonged use of antibitics is one theory!  I di clinical trials for a lady who is also very interested in the cause so when I can gather enough evidence I will pass it on to her.  My hubby very kindly bought me a holiday home right opposite a very quiet beach so I go there regurlarly to have some me time.   Please try to have somt time.  If you can your energy levels will I am sure improve although it is a long haul.  You are thankfully at least on the way.  Keep us up to date on treatment etc,
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