1. Community
  2. Diabetes and hormone problems
  3. Adrenal Disorders

My daughter has been taking Cortef since birth and I’m worried she takes too much

Posted , 4 users are following.

D9230
D9230

My daughter takes hormone replacements since birth including Cortef for cortisol replacement. She shows so many signs of too much cortisol (Cushing disease) such as a hump on her back, brain fog, slow wound healing and in the past year she has behavioral issues and depression. I spoke to her doctor about getting her cortisol levels checked and she just flat out said there is no tests you can do because she is on hormone replacements already and that nothing she has is anything to do with her cortisol levels or the medications she’s on. I’m wondering if anyone else has had these issues and any different responses as I don’t want her to keep having increased cortisol if she’s getting too much. Please help... any advise would be appreciated as I do not feel the doctor explains much at all!

0 likes, 3 replies

3 Replies

  • cool_catalan
    cool_catalan D9230

    Posted

    how much  cortisol is you daughter taking? how old is she? can you find another doctor? I do not want to worry you but  must of the doctors are the similar, but when it is so bad, we patients or relatives have to move on and try somebody else. You know... get a referral for a 'second opinion'. I really wish you luck. Tell us how much you daughter is taking and how old is she. I am not a doctor. Just an ill person investigating in Internet since 2015, June. I dare to say that taking hc does not create Cushing's... I was told that, and after my investigations, I found out that the consequences of taking too much hc for too long are not Cushing's. But there are consequences and you daughter should had been monitored being such a young person. Sorry I cannot tell you more because more information is needed.

    Thinking of you and your daughter

    monsie

  • kenzii92818
    kenzii92818 D9230

    Posted

    Hi I was taking 20 mg a day for 4 years and no doctor told me i was on too much however i developed symptoms put on loads of weight on got a very fat tummy...buffalo hump and round face it was only when I saw a picture of myself I realised and lowered dose after I discussed it with doctor at the hospital...I went back to normal weight quite some months after. though your daughter needsto speak to a specialist that knows about her illness before she does anything ...and if you went with her and also spoke to doctor of your concerns then maybe an understanding can be retched for the best way forward but in a safe controlled way..good luck
  • Roddy999
    Roddy999 D9230

    Posted

    20mg a day (10/5/5?) is the normal replacement dose for someone who has zero natural cortisol and there should be no side-effects. [This is my experience too]. So there is something else going on.

    There is NO convincing reason not to do a simple blood test to check that her cortisol level is within range: if her doctor won't do this then change her doctor. One has to wonder about motives! Was the initial diagnosis correct? This doctor's attitude would even make me want to get the test done independently because I would have concerns about being told the truth about the data.

    She may have another concurrent condition but it would be crazy not to to check the obvious first.  If the data is ok, she really really needs to see a specialist endocrinologist, not a generalist GP/PCP.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.