Hi
Can I ask how many of you had all the symptoms of Cushing's? I've been unwell for 2 years and after an adrenal adenoma was found over a year ago I have gone up 4 dress sizes. The operation to remove the adrenal gland was already in the pipeline but after having swelling in my legs recentIy, I got onto my consultant and made such a noise that I got to see him urgently and after having read up on this condition I suggested it to him. I am finally getting the correct tests done but initially they poo pooed the idea because I don't have all of the symptoms. I have massive weight gain that continues despite me not eating much at all, sores or bites that never heal, fatigue which means that some days I cannot get out of bed and pain in my side (where the adrenal adenoma is) and across my back. I am so close to this being diagnosed but I can tell you it has nearly destroyed me. Mentally and physically I am an empty shell. After reading your messages, I finally have hope that one day, very soon, I will be back to my old self. The one who was a size 12 and at the gym or running most days, and more importantly, able to do normal everyday things, including getting dressed and being able to put on my own socks without struggling.
I would be so interest to hear what symptoms everyone had and anything else you think would be helpful.
Many thanks
Hi
I totally get your frustration
I have basically had to diagnose myself
But the doctors won't listen to me
It is ridiculous how much weight I have gained
Let alone all the comments from people who are suppose to care about you
All I can say is don't worry about the weight
Just try to stay healthy
Lots of luck
Hi Toni, Please do not let this disease and its symptoms get you down. It is a long hard road to be diagnose with Cushings. No two people are the same and most G.P.s have never seen a patient with it before. I went from a 26£ waist to a 45" waist. I tried every diet but nothing helped. That was because of the Cushings, no matter what you eat or don't eat it goes straight to fat so you may as well enjoy your Xmas grub! I ha no moon face but I did have the red stratch mark, poor hair condition, excessive sweating and hairiness, aching in all limbs, headaches. Once and if you are diagnosed and have the necessary tests and operation you WILL start to feel better. Your weight will start to go down and you will be able to slowly return to your old self and life. I had no problem with my adrenal glands or anything like that so I cannot help you there. You are nearly there. Be strong and keep us up to date. There is always some-one her to answer you.
Hi Toni. You are so nearly there. I did not have any problems with my adrenal glands. I did have the huge weight gain. Ended up with a 45" waist and had to wear maternity clothes. Dieting is useless because however much you eat it all goes to fat. You might as well enjoy your Christmas lunch! No 2 of us have exactly the same symptoms. I had no moon face but did have red stretch marks, excessive sweating and hairiness, tired limbs and headaches. But once you are diagnosed and have the necessary op you will soon start to feel like your old self. It takes time but the weight starts to drop off quickly at first and then slows down to a more normal loss. We are always here and just keep your chin up and it will soon be over. Please let us know how you get on.
Hi Toni ,
I had a the same with my left adrenal gland over 6 years ago. After massive weight gain and despite swimming every morning I went from size 8 to 14/16 .
I was finally diagnosed by a clued up consultant when I went for a hospital procedure as an outpatient because my blood pressure was so high and they took me in for tests .
Following the op to remove the adrenal gland the weight just dropped off . I was given cortisone as my remaining gland had ‘gone to sleep’ because the other one had been so overactive and it took a about 6 months to taper off once it woke up.
The good news is I felt well and returned to normal so quickly and got my normal life back.
You feel hideous I know and I think the psychological effects are often overlooked but please stay strong as there can be a light at the end of the tunnel of which I’m proof.
Keep on at your consultants to get that op ASAP x
I screamed to my doctors 2 years prior to diagnosis that I had Cushings. Lab tests showed normal cortisol. So 2 years went by and I gained more weight, total 70 pounds. Had all the physical symptoms you read about. Could be the cushings poster child if you looked at me. Had high blood pressure, high testosterone (Im female), easy bruising on my forearms, and just before diagnosis this year I was pre diabetic. The weight come off pretty quickly for me. I had pituitary tumor. Never experienced fatigue.
Annie Im post op two weeks left adrenalectomy an having pretty rough time.
How long after did u start to lose weight? I’ve went size 10/12 to 20 😞 an when did your blood pressure go down? Did u even feel sick? Was ur back still sore for long after?
Sorry for all the questions! I’ve been told I’ll feel worse after surgery which I do. So they weren’t lien. An my face has badly broke out I dunno whether I was allergic to a drug I’d never had before or is it hormonal?
Any advice would be much appreciated! Thank u
Hi Annie,
Thank you for your message. It's good to hear that you're ok now. I cannot wait for the diagnosis and to feel ok again.
Merry Christmas
Much Love x
Merry Christmas to all those on the Forum. Thanks so much to ALL of you for your input and help. Let's hope that 2018 will bring good health to those of us who have been diagnosed and answers for those still waiting.
I had Cushing’s Syndrome for two years before it was diagnosed. I had my left adrenal removed in Oct & went on cortisol replacement therapy right away. I actually feel worse two months on & just want to feel better again. Mostly I am tired & my muscles ache terribly. I am sincerely hoping I start to feel human again soon.
Holli, Im right there with you although mine was pituitary. My intense muscle aches started at 3 months. Im now 6 mo post op and it feels that I will never feel better. I had the pleasure of talking to two women this week that said their body aches were intense too. The were both past the 1 year mark and assured me it will get better.
Plain and simple
Cushing causes the kind of weight gain
You go to the gym everyday (or some days)
Trying to avoid
I can't tell you how many rude comments
About not eating well enough , etc...
I've got
Funny thing is ... I'm kind of a health junkie
All in all though, it is a serious condition
and I would tell others who have it
Not to worry about the weight
And try to get better
The most important thing is getting a good surgeon
Hi Holli, I am so glad that you finally had your op. Like Patty mine was Pituitary. I am now 3 years down the line and do feel fine again. Your body has to have time to mend itself after the years of Cortisol overdose. Give it time and things will improve I promise you. Are you seeing your Endo regularly, if so do tell him/her whatever symptoms or pain you have. They may be able to help and need to know anyway so that they have more understanding of this awful disease. Let us know how you get on.
Hi Patty, I am intrigued that you were able to meet up with 2 Cushy's. I am also able to but thoiught that was rare. If they have advice or can help any of us here it would be great if they could join the forum. The more we all learn what the other has suffered the better understanding we have.
Vicki, You may know about this site already but I just found a support group via Facebook. On there I found people that lived very close to me. They are from all over just like on this site. It's only people that have or had Cushings. So much information from people that are going through the same. The Facebook link is Cushing's Recovery - Don't Stop Believing. You will be asked to join by answering 3 questions.
Thanks Patty, will have a look!
Hi and so sorry it’s taken so long to come back to you but unfortunately I’m not great with my iPhone and didn’t know how to find replies . I’m really hoping you are feeling better 2 months down the road
It took me a while to recover fully but my blood pressure and weight returned to normal .
I would love to hear from you how you are doing now and will try and get up to speed with my iPhone lol X
Aww thank u for replying, I sometimes forget to look at this forum too. I’m finally feelin a bit better but oh my goodness it has been rough. Was very nauesated for a long time. My blood pressure is still a bit over the place An my pulse can still b quite rapid. An I haven’t lost much weight which disapoints me. But then I haven’t been movin much? But my face has de swelled an I’ve noticed little changes. I just would love to lose more weight an bp An pulse to regulate. But I’m only 8weeks post op so I can’t expect loads can I? X
You are doing really well. Give it time for your body to get to grips again! We have a new lady Camilla who has asked for info. I have replied but you may have something to add. Take care.
Ach thank u Vicky. Did ur bp or purse take long to go down An settle? I’m kinda lookin at it that my body is in the dt’s An it jus gettin use to not havin high dose of steriods anymore. I’ll take a look an see if I can. Thank u.