Cushing’s syndrome

[Caroline8386]

Hi I have been diagnosed with cushing’s syndrome in June I have a 3.8 adenoma and my bones are degenerating daily and lots more symptoms does anyone have Cushings? Any information I would really appreciate it’s not widely available information on this awful disease.

[humanbean]

Hidden is knowledgeable on Cushing's. You can read her previous posts and replies here :

healthunlocked.com/user/pau...

[Caroline8386 in reply to humanbean]

Thank you.

[SlowDragon Administrator]

Have you had vitamin D, folate, B12, ferritin and thyroid levels tested?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

[SlowDragon Administrator]

Cushings disease is often linked to thyroid disease

ncbi.nlm.nih.gov/pubmed/122...

Patients with endogenous Cushing's syndrome exhibit a remarkably high prevalence of primary thyroid disease. Resolution of hypercortisolism seems to trigger the development of autoimmune thyroid disorders in presumably predisposed subjects.

Therefore recommend to get FULL Thyroid and vitamin testing

[Caroline8386 in reply to SlowDragon]

Thank you I will look.

[Dodge7]

I don't have any information but this sounds awful. I have black disc disease and a torn annular? Annulus? So I understand a little about pain if you need to talk. I'm sorry you have this

[Caroline8386 in reply to Dodge7]

Thank you hopefully I will get it sorted in time I hope you do too.

[Ossuryak]

My pony has Cushings and I give her chastree berry it works for her , not suggesting you take it but humans do take it , you could contact a naturapath ,please do so before you even think of taking it. You may also like to look up vitamin K2 because to my understanding its needed to takes calcium to bones.

[Caroline8386 in reply to Ossuryak]

Thank you someone did mention this to me but didn’t get back to me I’ll look into it.

[vocalEK in reply to Caroline8386]

Yes, the specific type of Vitamin K required to help Vitamin D get to bones instead of to soft tissues is Vitamin K2 MK-7. I am hoping that adding the K to my Vitamin D will help to stop the darn micro-calcifications in my beast tissue.

[Caroline8386 in reply to vocalEK]

Thank you I will ask about this I haven’t been offered any vitamins I’m hoping that when I see a specialist they will tell me.

[LuluCops]

I have Addison’s disease- which is basically the opposite of Cushings. The ADSHG website and forums are very, very helpful and informative. Professor John Wass is the clinical lead for the group, he is very, very good. I found the forum so helpful when I was first diagnosed almost two years ago and they have continued to be a massive support to me, much like the forum here, and I have to say a lot of the symptoms overlap and are very similar.

addisons.org.uk/

That’s a link to their website, I hope it works for you, or just copy and paste it/ type it in. I don’t know much about cushings by any means, but I do know adrenal insufficiency and how it affects you day to day. And the pain and fatigue are horrendous to cope with sometimes.

I hope you find some answers on the website and I hope that you get some answers from your next appointment. Good luck and take care

Shelley xx

[Caroline8386 in reply to LuluCops]

Thank you I will look at the site I appreciate any information xx

[LuluCops in reply to Caroline8386]

You’re very welcome lovely. If you wish to chat further just drop me a dm, always willing to listen

Shelley xx

[Hidden]

Hi Caroline - I'm sorry you've been diagnosed with Cushing's, what is the source of your high cortisol? It can be caused by a pituitary or adrenal benign tumour, or due to long term steroid use. I have had Cushing's due to a pituitary tumour which was removed. If it is caused by a pituitary or adrenal tumour then only surgery will resolve it. It is not a nic condition to have. If you are n Facebook then there is a group called Cushing's UK. Also have a look at the Pituitary foundation website for lots more information. I;m happy to try &answer any questions you may have. Pauline

[Caroline8386 in reply to Hidden]

Hi thanks finally someone else has had it (sorry) it’s adrenal tumour 3.8 I’m going in August for consultation it’s been a long road I’m counting the days down I don’t understand why it’s not diagnosed easier it’s made me angry sad relieved to know it’s been a fight I feel trying for help no one knows or understands how you feel sorry going on my bones are weak and feel if I’m not sorted soon I’ll be disabled what is it like after re manage cortisol levels? Also my memory is getting worse so many things id appreciate any information please..

[Caroline8386 in reply to Caroline8386]

Also did anyone mention the MEN1 gene to you? No one has to me but I’ve looked it up and it all seems connected

Xx

[Hidden]

No the MEN1 gene was't mentioned but then my pituitary tumour was found by chance. It's a horrible condition to have, it's rare so doctors don't always think about it, they go with the easiest option - obesity or PCOS. Even Endo;s don't always understand it so it's important to see an Endo who does. They like to get all the biochemical evidence before they commit themselves to surgery. Do come & join us on Cushing's UK to talk to others with Cushing's.

[Caroline8386 in reply to Hidden]

Thanks I’m not on Facebook do you have to be on that?.

[LuluCops in reply to Caroline8386]

The pituitary foundation website has forums like this that you can join and talk to others in the same situation. I do apologise, I’d forgotten about that website xx

[Caroline8386 in reply to LuluCops]

Thank you I’ll have a look today xx

[Hidden]

It is only on Facebook

[Hidden]

Sorry pressed the key too quickly! yes you need to be on FB to join, we are part of the Pituitary Foundation & have nearly 800 members all in the UK. It's been a great source of information & help for those people with Cushing's.

[Caroline8386 in reply to Hidden]

Thanks Pauline