my husband started in january with abdominal pains, went to gp was told he had possibly pulled stomach through coughing! pain carried on and got more severe to the point where he could not stand up or walk, pain travelleled into back, legs and chest. returned to gp and upon examination found lump on each testical, hernia each side of groin, as his stomach was bloated all time he was referred for endoscopy and ct scan, results of ct showed adrenal adenoma, was reffered to specialist and was told nothing to worry about no more tests needed, unitl we insisted an mri scan etc as my husband had quite a few symptoms to suggest the adenoma was 'functioning'. during the wait for results my husbands pain got worse, took him to local A & E and after 5 hours of waiting and was given tramadol and sent home, this was beginning of june. his breast started swellin, stomach doubled in size and pain intense constantly, so i took him to another hospital emergancy dept who admitted him straight away and he was promised they would send him for all the tests needed!! only thing they did was refer him for sidmoidoscopy a month later which showed diverticulitus, since then he has been admitted by his gp to the same hosp and gp spoke to surgeon on call and requested they do something as its gone on for long enough gp convinced adenoma is producing hormones, they did one cortisol test in afternoon was 47, he was discharged after 2 nights stay with no other tests done, but a neurologist on call promised he would have him tested and sorted, he told my husband he wasnt convinced the lumps on testicals were just cists and wanted further tests doing, he also said that he agrees with our gp that the adenoma is functioning and that it can seriously effect your body and health, my husband was discharged following morning after no more tests done, during his stay in hosp they was giving him orimorph, tramadol and paracetamol and he was still in a lot of pain!!! was referred to endo and full bloods were took still no results no hormone tests done as yet and husband in chronic pain in stomach legs and back, losing weight on shoulders,arms and legs, bad cough still, fatigue feeling nausia, no appitite and struggling with every day life!! its very frustrating for me and his children seeing someone thats usually full of energy and works hard for a living (self employed).to be in that much pain he cant hardly walk or move! if anyone can give us any advice we would be greatful, thanks
I had a hard time reading your post (no breaks) - so I may have missed some details.
I don't know if the cortisol was high without a range - or how high - and BTW testing in the afternoon is rather... eh, bad... cortisol can only be tested at certain times of the day to be diagnostic as it can vary by time of day so it should be early in the morning when it should be highest as in 8am or midnight when it should be lowest. Afternoon it is dipping so it is hard to tell.
There can be a lot of adrenal hormones - including androgen related - and it could be a pituitary issue included (or not) so he needs a lot of hormone testing and it has to be done correctly.
He has lost weight - how is his blood pressure? High or low? Any prolactin testing, ACTH, sodium, potassium - did they do any 24 hour urine testing?
The only decent hospital I know in the UK is St Barts that has helped my friends with Cushing's - which is too much cortisol. Make sure you get as much of the records as you can (which from what I understand in the UK is very hard) so you can keep on top of the real results as we often get told stuff is ok when it is not.
The body hurts a LOT when cortisol is low - cortisol is an anti-inflammatory so it could be a factor here - and you have to fight to get help. Doctors are not good with this stuff. Links in the health pages may help.
thank you for replying. my husband has had 24 urine test done (the specialist actually wanted to use the urine that was took 4 year ago as they freeze it aparently) but the path lab insisted he did a fresh one!! we was never told the results.
The endo said that his cortisol level was low at 47 but he did not seem to concerned at that, my husband is developing itchy face and hands now and redness to the face and severe muscle cramps in the right leg he is 46 years old and struggling to stand, sit and walk now! we still have not got appointment through to have the adenoma tested!! we never get told anything from any results took, his local gp has had to send urgent messages to the consultants to basically tell them to do their job properly as he is very concerned and believes my husband possibly has symptoms of addisons! I am ringing the hospital to make a complaint as we have had enough of been passed from pillow to post and nothing getting done!
Fresh tests are better but did you happen to keep the jug cold the entire time? Cortisol will degrade with bacteria and even with the preservative, best to keep cold cold cold.
He also needs other tests done. What about sodium and potassium? How are his other hormones? Glad you have a GP on board. Weird if they suspect AI and let it go as that can well, be life threatening so what are they waiting for?
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