Anyone here with Cushings Disease or Cyclical Cushings?

[Incoguto]

Hey all,

Having an MRI in 2 weeks time for my pituitary.

I am unable to be on thyroid replacement I used to be on, raising doses seem to increase my cortisol further.

Any helpful info would be amazing!

Thanks x

[mc111]

Hi there

Sorry to hear you've been having these health problems and maybe I can't give you much useful information, but can tell you about my experience.

I had Cushing's disease about 16 years ago. Mine was caused by a benign tumour on my pituitary gland. Have to say it took me few years of going backwards and forwards to my g.p. who wasn't very helpful back then. I was having problems with my thyroid which was doing strange things but not on medication then and as the gp said, it was still working ok. He just said it's your age, menopause and that was it.

Still feeling unwell and knowing I had something wrong with me which wasn't due to menopause I changed surgeries. Obviously different doctor who did bloods again then referred me to the endocrine clinic at hospital straight away. Although after tests they knew what was wrong with me it still took over another year to make sure the tumour was on the pituitary gland and nowhere else. My tumour was so small it didn't show up on MRI, even with dyes so eventually another test was needed which confirmed where it was.

I eventually had successful surgery which all went very well. From making too much cortisol I now don't make any at all so have secondary Addison's disease and have to take hydrocortisone x 3 daily. Although it's more medication I've never really had a serious problem in the last 16 years.

It wasn't until a while later that I also needed medication for hypothyroid. Not easy getting the dosage right but eventually all ok. I now attend the Endocrine clinic once a year for a check up.

My heart goes out to you. It's such a complicated thing and so a long time to worry about everything but think the surgery for this is very successful.

Don't think this will help much but just to let you know there is joy after Cushing's. Wishing you lots of luck and a speedy end result.

God bless 👍x

[Incoguto in reply to mc111]

Thank you so so much for your reply 🤗I am very sorry to hear you went through iyt but I'm happy to know you're now back to feeling okay.

My bloods are confusing, sometimes cortisol is elevated, sometimes it isn't. Same with ACTH.

One prof I saw told me I could have Cushings years ago, he was supposed to get me in for tests, but never heard back from him and I never followed up.

My endo now told me to get MRI to rule it out, but I worry that it may not show up if it is that.

May I ask if you had typical symptoms? I have most of them apart from striae, my arms and legs are not thin. My face goes puffy up and down like I can't recognise myself.

Was the another test to confirm tumour also an MRI or was if the other test where they put tubes into you and check if tumour is ectopic or pit?

Thank you once again x

[mc111 in reply to Incoguto]

Hello again

Oh that sounds so confusing...no wonder it takes so long to diagnose. Very complicated.

Biggest symptom for me was putting on loads of weight. I went from being a size 10/12 to a 16 . I had this kind of pad of fat on the back of my neck (they call it buffalo hump). Yes, face went a bit puffy and I bruised very easily. I started on medication for high blood pressure but maybe that would have happened anyway. And I was just full of aches and pains, weak around the hip area. I can remember at the end of the day it was easier to crawl up the stairs rather then go upright, too exhausting.

Yes I did have to have that inferior petrosal sinus thing where they put the tubes into your groin, then do their tests. It doesn't sound good and I was very nervous, but again with hindsight, it doesn't hurt and the worst part was probably laying still afterwards. It certainly confirmed that it was on the pituitary and which side it was. Hopefully yours will show up on the MRI. I read somewhere that the machines are different now and better at showing the smaller ones (which mine was).

Bit of a change of subject. My rescue Staffie also developed Cushing's having to take ongoing low dose of steroids for an ear problem. So we suffered together bless her.

Hope the MRI goes well for you. It's quite a rare disease so good to find someone else who has the same thing . Although there are organisations around.

If you have the time please let me know how you get on and hope I've helped a little.

Take care x

[Incoguto in reply to mc111]

Thank you once again, this is very helpful❤️

This is why I am not sure if this is just the thyroid (just) or also Cushings.

I have put on weight, about 14 kgs, but that is over several years, not sure if that's significant enough, because it happened once I was back on Levothyroxine moving from Armour. Now back on Armour as I can't take just Levo.

I guess my symptoms are questionable.

I have a fat pad, but that again is not very prominent.

I feel dizzy, I have vertigo too and so many other symptoms. Housebound now mainly until I can figure it out.

My face can be skinny one moment, and then puffy another. My BP is okay, my blood glucose is a bit over range since last year, coinciding with thyroid med changes.

Aw she does? Bless her, how is she doing

?? X

I will be definitely in touch. I am so thankful you have responded, very hard to find someone who has gone through it xxx

Take care!

[mc111 in reply to Incoguto]

Hello

Am so sorry to hear you are more or less housebound, that's very frustrating for you. You mentioned that you will have an MRI soon. It's a step further along and hopefully it will give them more information, point them in the right direction.

I put on more than you did and I guess I put it on quicker. I just couldn't understand it, had always been slim so I knew there was something really wrong with me. Hormones are so complicated and we all know in ourselves whether we are well or not.

So it really is a puzzle, yours may or may not be Cushing's? I hope you have a good doctor..it sounds as though you do. It makes all the difference. Mine was not helpful at all but when I changed surgeries I got referred to the hospital straight away, which was what I needed.

I did have some problems with thyroid medication when they tried to increase it (palpitations) but this has mostly gone with a decrease in Levothyroxine. At the same time I also started getting tinnitus, never had it before. I have a cousin who suffers from vertigo too. My heart goes out to you both. Such a horrible thing and so debilitating..although she doesn't suffer from other things.

Should have said, my dog passed way back in 2016, so a few years ago now but she was 14, so not a young dog. She managed fine I think mostly.

Your BP is fine, at least that's one thing that's good. My glucose comes and goes. I try to be good with diet but sometimes fail miserably. I'll blame it on the grandchildren lol

Fingers crossed for the MRI and hoping they get to fix things for you very soon.

It's good for me to chat too. You take care also and hope you can enjoy some of your weekend. 🙏😀❤️