adrenal gland words

Hi Warriors!

 

I hope that you had a good week.  I know that many of us are super busy as we are in the midst of the holiday season. 

 

I know it is hard to fit in but try to rest whenever possible so that you can enjoy the next few weeks.

 

Personally, with so much to do, I find having to slow down to keep myself functioning to be VERY frustrating.  But it is what it is and I am fortunate to have understanding family and friends.

 

Thank you to all of my patient and caring loved ones.  I appreciate YOU!

 

 

Today, I want to talk about the adrenal gland, low cortisol and adrenal insufficiency.

 

You may be wondering why I am talking about an entirely different condition than PMR.  What does PMR have to do with adrenal insufficiency (AI), some may ask?  

 

For those of you who are not taking a steroid for PMR, you may not have to deal with the potential for developing AI.  But for folks on steroids, developing AI is a very real possibility.

 

The simple explanation about AI is as follows:

 

Long-term steroid use suppresses the adrenal glands causing them to shut down.  As you taper down on steroids, the hope is that your adrenal glands will "wake up" once you get to around 5 mg of Prednisone (or equivalent for other steroids).

 

 

For many of us on steroids, we get "stuck" at around 5 mg because our adrenal glands are NOT waking up.  If this happens, our bodies are functioning without enough cortisol, which is a hormone manufactured by the adrenal gland.

 

Low cortisol makes you feel yucky!! 

 

Cortisol is needed to help manage stress, temperature, energy, blood sugar, mood, blood pressure and many other functions.  It is no wonder that you do not feel yourself if you experience low cortisol.

 

 

Symptoms of low cortisol are:

  • Extreme fatigue
  • Headache
  • Cold intolerance
  • Achy muscles
  • Lightheaded
  • Low blood pressure and pulse rate

 

Sounds a bit like PMR?  And especially when we taper!!  

 

Chronic low cortisol and the inability to taper below 5 mg of Pred without severe symptoms needs to be investigated

 

Blood work to measure low cortisol can be ordered by your rheumatologist or PCP after you are consistently at 5mg of Prednisone.  Make sure that you withhold your Prednsionse for 24 hours prior to the 8 AM labwork.  Remember to discuss these specifics with your doctor.

 

 

If your cortisol levels come back very low, you may receive a diagnosis of secondary adrenal insufficiency (SAI).  SAI is a whole new condition to learn about.  

 

I was diagnosed with Secondary Adrenal Insufficiency 2 weeks ago after being "stuck" at 5 mg of Pred for 5 months. 

 

I was starting to get discouraged so I began asking pointed questions to my endocrinologist about my cortisol.  I wanted to know what the "plan" was to move forward.  My questioning seemed to motivate her to investigate my cortisol levels further and thus I arrived at another new (and frightening) diagnosis- Adrenal Insufficiency.

 

I had been a limp rag for weeks.  I had taken to "sleeping around" wherever I went.  Not in any type of "fun" sense of the term.  I literally fell asleep wherever I was, sometimes many times a day. In the car, at relatives and friends' houses and especially when sitting down, I would just instantly drop off for an hour or 2.

 

 

I felt like I was sleep-walking through my days and still do much of the time.

 

I am happy that my endocrinologist has a plan to help me to hopefully overcome SAI in approximately a year.  However, my rheumatologist is not yet on board.  I hope that they work it out between the 2 of them so I don't have to make any uncomfortable choices.  

 

In the meantime, I have an abundance to learn about SAI.  There is too much to tell you about to include in this blog.

 

So next time, I will talk more about adrenal insufficiency as a separate topic as there is PLENTY to tell you about it.

 

 

Take care and have a good week all!!

 

Donna