hi i had a blood test in early feb which showed a level of cortisol of 11 nmol and this had been repeated but i have still been refused any input from a endcrinlogist or any further test - i have just been told to take steriods and that is all they will know - i keep trying to push this forward but two hospitals have refused to accept me as patient and i am going crazy at how to get this sorted - any advice i didnt know hospitals had the right to refuse my gp seems to think that eventually someone will accept me but how long could this take
Hi Norman: I don’t know exactly what your test numbers mean. Different labs and tests use different values. I do recommend, however, that you add 25 mg of DHEA to your hydrocortisone (I assume that is what you are taking). It is an over-the-counter supplement that is recommended for Addison’s patients as DHEA is part of the adrenal system. It really helps. Also, you need to stay well hydrated. For some addisonians, like myself, the slightest bit of dehydration causes me to ache and feel like crap. Why hasn’t your doctor sent a referral to an endocrinologist? That is where you need to start. If insurance is an issue, try going to the nearest University hospital in your area. That’s where I headed when I got nowhere with the uncaring endos in my area. Addison’s is complex, and yet most doctors just brush it off like it is no big deal. Watch your blood pressure. You can tank out if you are dehydrated or stressed out. If you find yourself getting dizzy when standing or just have regular low blood pressure then your gp will need to add another medication called “fludrocortisone.” It is a balancing act. And you also need to know exactly what kind of Addison’s you have, and WHY. Is there a tumor on your adrenal glands? Have they done a CT scan of them? These are questions you need to ask and DEMAND answers for. Best of luck.
First, you probably should explain more. What do you mean hospitals refuse you? Are you uninsured and they won’t do the test there? Also, whomever did your test initially should discuss the results with you or send them to your GP so s/he can discuss the results with you. Your GP can request the results of the test and then confer with friends in that field. It’s good to have an endocrinologist; however, GPs can also treat Addison’s disease. It’s a matter of what combination of drugs keep you balanced. In my case, I take Florinef and prednisone, very little of each. I searched for 10 YEARS to find someone who knew what they were doing because I went undiagnosed. It was only when I was near death that I was diagnosed and then it was my GP who found it. But he sent me on to an endocrinologist. Sounds like you need to scout out a different endocrinologist and make arrangements with the hospital for paying for whatever it is they are putting you in for. Also, remember, you are your own best advocate, but I would caution you against reading everything about it on the internet. There is a lot of misinformation out there. Good luck.
hi thanks both for the responses
i have had 2 blood tests which show a level of 5% of the normal low range for cortisol ( here it is 220 - 770) so 2 tests of 11 is bad i guess - in theory as i am uk the nhs should fund but in reality they don’t they just pass you around until you give up as they all make excuses to avoid paying to treat you - i am looking at trying to pay myself for some help - i have been give 4 different levels of cortiosl to take by various docs but no tests from an endcrinologist - i have tried taking the steriods but they are making me feel worse so am tempted to cut down or maybe even stop as if i get so bad i have to go into hospital then they will have to pay to treat me - we have a crazy system here ! the hydrocortison i have been told take 120 mg / 60 mg / 30 and or 15 mg - went orignally for a week at 60 then 30 but still feel so ill so now on 20mg but may try 15 - not sure if is bad to try less? i will try and get some dhea as i know i can buy over counter i dont know why my levels are bad - one theory is inhaled steriods but they really have no idea - i have no symptons over than fatigue ?
thanks for responding - feeling really lost and alone here !
Hi Norman, I understand now. Do I have this right - you live in the UK and are having a hard time getting someone to treat you for Addison’s disease? Each addisonian (that’s what they call us) is different and we each take different strengths of our medications. The strength you take depends on your cortisol AM and PM levels. I don’t understand the numbers you give; however, won’t your family doctor treat you for this? Perhaps you don’t have a true Addison’s disease, you might have adrenal fatigue (which also causes fatigue). Do you have any of these : craving for sodium, low blood pressure, inability to have any quality of life because you are unable to move around, changing color of your skin (assuming you are Caucasian) or mucus membranes? I am on a very small dose of prednisone 5 mg. and Florinef (which helps keep my blood pressure up and stems the craving for sodium) 1/2 of 0.1%. I have heard of people being on massive doses of both for Addison’s disease. I can tell you on that dose, I am very active, exercise, dance, zipline and pretty energetic for a senior (I’m 62). I was diagnosed 13 years ago and was close to death. If there is a day when you cannot get out of bed, or have a hard time breathing, that is the day you need to go to the hospital to have someone treat you. That happened to me numerous times and I just laid in bed for all those years. It’s touch and go with the medications. Some people need more, some need less. Who started you on the dose you are on now? That is the person who is treating you and keep going back until they get it right. You MUST listen to your body and bother the doctor. This is a life and death situation. Addison’s is nothing to fool around with. My skin turned bronze, my mucus membranes (gums and inside of mouth) turned very dark, and I had malnutrition from vomiting because my stomach was also affected. Addison’s usually goes along with other glandular diseases like thyroid disease. I hate to say this because I worked in the medical establishment - but you may have to fake it to get into the hospital to save your life.