adrenal growth - today I have severe pain...advice needed

[evo123]

I have a growth on my left adrenal gland which is being monitored for growth.  It has been tested for pheo and doctors do not think it is functioning.  Today I have really bad pain in my back over the kidney/adrenal area, it feels like someone is twisting a knife through me!!!  This is new for me.  I have tested my urine with a multi stick to check for UTI but this was clear.

Do you think I need to go and get looked at by the out of hours doctor (it's sunday) or do you think I should leave it untill tomorrow and see my own GP.  I'm just not sure what to do, any advice would be apprecited x

[rumpled]

Whoa! Have they tested your cortisol, renin, aldosterone. DHEA, metaphrines, etc. and is everything normal?

Personally, I hate the wait and see thing....

If you have that much pain, I would see someone.

[evo123]

I had one high cortisol level so they done a dexamethasone suppression test which was normal and they did urine tests for pheo that were also normal.  Renin, aldosterone and DHEA were not tested.  I am awaiting a MRI after xmas to xheck for growth. I don't normally have this strong pain but today it has just come on me.  I have been told I have suspected POTS.

I am unsure whether going anywhere today would be worthwhile or should I wait it out until tomorrow when it is not on-call doctors.

My potassium levels keep falling low so I wonder why they have not tested my aldosterone (my sodium are high end of normal).  

Right now I keep going a little clammy to!!!!  But apart from the pain and clamminess all the other symptoms I have are not to bad the past few days.

[rumpled]

Dex supression test - IMHO - garbage. I failed that and still had Cushings as well as hundreds of other people I know so if that is their test of exclusion, that is a problem. If you have not had the other tests, they have not fully tested most of the adrenal hormones!

Potassium is an issue! A bit of florinef may help keep you stable - sodium and K are related and how they are handled are in sync.

How is your blood pressure?  The MRI can tell you size, but really, you need labwork more than anything - that is more critical at this point. Has ACTH been tested? Both ACTH and renin are fussy, and degrade fast, so make sure the lab tech does them correctly - get them in the centrifuge fast after the draw and ask him/her to freeze as soon as it finishes or the test will be invalid. My ACTH is extra high and my results can drop by 800 points or so and the range is only 6-27.

I will be traveling so responses will be delayed.

[evo123]

The endocrinologist who I was passed to discharged me from his care stating that he 'thought' the growth to be ok and he will just scan in a few months to check for growth, I asked for more testing and also a plasma free metanephrines blood test and he dismissed me!!!  I actually walked out of that appointment in tears.

I was on florinef for the 'suspected' POTS but my GP has weaned me off them as she was not happy prescribing me medication that another dr started me on without a confirmed dx.  I am less dizzy being off these but the same in all other ways.  

My bp fluctuates as does my heart rate.  My bp can be low in the 90's systolic and can spike as high as 204/54!!!!!  It increases when I am on my feet also.  It tends to stay around 130 - 140 systolic lately.  

My growth is only small, 10mm x 7mm.  I ordered copis of the tests they done and can post them here if you think it would help having someone look over them.  My GP is convinced there is an underlying cause to the POTS symptoms and is willing to refer me to a different endo if needed.  I have also read that their is a connection between renin-aldosterone ratio's and POTS.  

[rumpled]

Ah the ol' thinking thing... that helped me once - get sicker, that is. He has tested you for pheo, but there are many other adrenal disorders that it appears that he has not even bothered to consider.

I have cried out of frustration after many a appointment. I want to kick a few docs too.

Size of hormonal tumors is not a factor - even a few cells can wreak havoc. My pit tumor that has grown back is not showing up on an MRI, but yet my ACTH readings can be as high as 3117 (6-27).

You need a different endo - you may need the florinef just when you need it, but it may not be POTS, but a cortisol issue. Have you seen a cardiologist?