Addison's Disease Support Group

Hi Kellers I see you are from the UK. Have you taken a look at these sites as they are very imformative and might have the answer you are seeking.

http://www.addisons.org.uk/

http://www.addisons-network.co.uk/

On the second site the owner is a knowledgeable retired bio chemist and will try to answer any questions you have.

Good luck.

Jen

Thankyou Jen, the first one i am a member of. I will definatley have a look at the second.
thanks
kelly(kellers)

Kellers,
Don't be overly worried about the renin test. My guess is that the endo is thinking that if it is still high they may want to look at some other reasons for that than the fludro level. Renin is an enzyme involved in a chain of events that the body initiates if the sodium gets too low, or the blood pressure gets too low. This chain of events results in the adrenal glands releasing aldosterone (fludro) in a normal person. So, it is an indirect measure of how well the fludro dose is working for an Addison's patient. But it can be affected by other things as well - blood pressure, kidney function ..... When our adrenals don't make these hormones, trying to mimic their normal function is pretty hard to do so I am guessing that your endo is just trying to see how well they are doing with the current dosage of fludro for this part of the problem in your son. If he is doing well and seems fine, then I don't think you have too much to worry about. It is a matter of fine tuning. Still, the doc should have answered your questions. I hate it when they put people off like that, now making you worry for probably nothing. Of course, I can't be sure what he's thinking, but I'm making an educated guess.

Vanyel

hi vanyel,
Rhys's blood pressure was a bit lowt on that day the endo on the ward said it was nothing to worry about at the moment and would pass it on to Rhys's own endo, not sure why it was low maybe because he wasn't very hungry in the morning and only wanted some fruit for breakfast and that he had to lay on the bed for 50 minutes before the renin bloods were done. His bp was low before the bloods and then lower after they were done.

When Rhys's first renin level came back high his bp was normal and they expected it to high.

I just can't help worrying though his my baby and i would do anything to take it all away from him. He does cope very well though, and rarely has any problems apart from last november when most of that month was spent in hospital due to tonsilitis then gastreoentoritis.

kelly (kellers)

Kelly,
If his blood pressure is running low, he may need more fludro. That may be why they are looking at his renin. Does he ever complain of dizziness, or lightheadedness or feeling like he might faint? Addison's can cause low blood pressure from lack of aldosterone and sodium imbalance. I'm sure they are just trying to follow this and tweak his meds for him to optimize. He sounds like quite a trooper.

Hi,
Rhys hasn't mentioned any signs of dizziness, light headed nothing at all. Apart from being ill last november. He had chicken pox over christmas and fevers that we managed at home.
He doesn't really get anything that cant be managed at home on doubled doses. He doesn't really well.
He always asks for salt on his food and sometimes says he cant taste it and needs more on it.
kelly

Hi all,
Rhys see his endo on wednesday and all is well, the increase in fludro seems to have worked, his plasma renin has come down and all seems good at the moment. His blood pressure was perfect, so all is good.
Rhys had been complaining of achey legs in the morning so his evening dose of hydro has moved from 9pm to 10 pm to take him through till his 6am dose, by 4am his cortisol is untraceable which causes the aches, but with the time change that will stop.
Hope everyone is well.

kelly

Glad to hear he is doing well. :)