Adrenal Insufficiency Support Group

Hi my name is Tarm and I was recently diagnosed with adrenal gland failure but not addisons disease. I had been ill from 27 June 2011 but my Dr could not find the reason why my face and neck were extremely swollen, muscle weakness, chronic fatigue, severe sweating and headaches, out of control mood swings, salt and sweet cravings, mental confusion, memory loss, lack of energy, unable to function in the morning but feeling good at night, unable to sleep without sleeping tablets, unable to handle stress and depression. As my face was rather large he decided to test my cortisol levels as he thought I may have cushings syndrome. However after he received the results he rang me early sat morning and asked me to go directly to the emergency dept as my cortisol level was just 11 normal levels are 85-440. I refused as 2 weeks before I had been treated rther badly when he sent me there so he asked me to go see him on mon at 9am. He explained about low cortisol levels so I took myself to the emergency dept. They panicked and gave me and injection of cortisone before and endocrinologist could see me. I was admitted to hospital for 3 days and they did a ct scan of my pituitary but it was clear. I was sent home after 2 synacthen tests. The first level before the injection of cortisone was 85 and after it only managed to get to 110. Over the next month they did more synacthen tests and always the results were not good. The highest level it got to was 230. I was told that the swelling had nothing to do with what was happening with my adrenal glands. I am still under an endocrinologist but on my visit mon 3 Oct 2011 I told her that for the past 2 weeks I had been having high blood pressure problems. I have always had perfect blood pressure so a blood and 24 hour urine test was ordered. My blood pressure has been over 150 with the highest the day I visited her as 190. My own GP had asked that I been tested for pheochromocytoma when I was first diagnosed but they refused as they told me I didnt fit the profile. So now I am awaiting the results next thurs. I did alot of research as the endocrinologist was not forthcoming with information about the symptons I was experiencing. I found out I was hypoglycemic and that the extreme swelling was in fact because I was losing salt from severe sweating and my body was holding onto the fluid causing the swelling. I do not like salt and do not use it in cooking so decided to drink a tsp of salt in warm water for 3 days imagine my surprise when my swelling went down. I now use repalyte instead of salt. So now it is quite confusing as Im unsure what is actually happening. All my other blood tests have been ok. Addisons disease has been ruled out. I have rheumatoid arthritis and take methotrexate and plaquenil. Im currently on 10mg hydrocortison morn and night. I have had 13 days of feeling well until the past week but my own Dr has said it is my blood pressure making me feel unwell. I was also diagnosed with very little vitamin d but I am a sun lover so dont understand that. Has anyone else experienced this and can others give me any hope regarding this.

Thanks Tarm

Hi Tarm

Lets not be picky about the definition of Addisons. It doesnt seem too well defined anyway! You have to use more specific terms like primary, secondary or tertiary adrenocortical insufficiency! If you get any more than one pituitary hormone involved you start using the catch all "hypopituitarism"!

The adrenal glands have three main functions and a lot of minor ones. For most of us in the group the resultant low cortisol is the big one (low BP, low energy/BG, anti-inflammatory action and a stack of other things), followed by mineralocorticoid action (water/K/Na balance, dehydration & low BP), then androgens (female cycles, well being and libido etc). Generally speaking replacement dosing has to eventually consider all three.

Keep in mind that HC use is very dynamic and will affect testing. It has a short half life of only a few hours and will affect BG and BP. I can swing hyper and hypo glycemic and tensive 4 times a day in line with my dose schedule. I even had a doctor once push me into taking high BP meds because he thought I had systemic hypertension. That made me half pass out at the hypo times!

You don’t say when your HC dosing started and whether it correlates with BP issues.

Salt raises BP by increasing water retention and thus blood volume. That's the mineralo-corticoid action I was talking about. Many of us use salt in diet to help regulate this. In terms of replacement dosing, HC has "a lot" of this steroid along with the gluco-corticoid one. If during the dose tuning process you find to high BP and bloating from water retention, it's worth considering Prednisone instead. It has about 1/5 the mineralo-corticoid action that HC has for the same gluco-corticoid value.

If you have a secondary condition (ie the failure is in the pituitary) it is common to start dosing and feel good for a week or two, then suddenly feel rotten. That's the natural system gradually ramping down its own production. A flawed pit will try to maintain the same (wrong) cortisol level. The fix is to eventually seek full replacement. ie 20mg may not be enough for you.

I cant comment on the RA drugs but a quick look makes no mention of cortico-steroid interactions. I'd venture to say that the estrogen patch is also benign in the same area. Many girls here on HC etc also need progesterone or estrogens to offset the loss of androgens. Its actually a side effect of HC treatment in many cases.

Synacthen testing has to be thought about carefully. A low response implies primary (adrenal gland - mostly what Addisons is called) but if they "haven’t been used for a while" from a secondary (pituitary) based issue you can get similar results. This is why you normally have three draws, 0, 30 and 60 minutes. There are also a few different types of tests, low dose, high dose, long and short! This is why most of my hair has gone!

I'll admit its hard to follow and make deductions from your post. Its very complex. My first gut response is that the cortisone injection and subsequent HC use, although great for cortisol is too much for blood volume. ie time to switch to a steroid like Pred. Ingesting salt now whilst taking HC will probably just make the BP worse.

Low VitD is common for AI people. I take about 3000u/day but some of us here take 10-20x that. There is dietary D3 along with the sun induced stuff. My knowledge isn’t complete on that process though.

Apologies for not being definitive. I hope some others chime in.

Bob (Australia)

A fellow sweller!!! Big hugsxxx I live in Asia and I have exactly the same swelling problem. As soon as I up my HC, the swelling stops and HC moderates salts too! Hopefully, you will find the HC a HUGE relief!

Most people swell because of HC but I swell because of not enough HC. Secondly, the swelling causes an INCREASE in BP unlike normal AI patients who suffer a drop in BP. This confuses doctors Luckily my endo is a real guru and a fantastic person so he just calmly deals with anything that is not a textbook case without dismissing it altogether.

Don't worry...the steroids are going to make a huge difference.

I just want to mention that most of the symptoms you mention - from hypoglycemia to joint/muscle pain, etc. are directly correlated with adrenal insufficiency. I also had high blood pressure just before my diagnosis - I think my body was just fighting to try to stabilize and my arteries were constricted. I have completely normal bp now, two+ years after diagnosis.

Deb