Addison's Disease

[Heva2015]

Hi all

Was just wondering if anyone else had this or any form of adrenal insufficiency?

One of my symptoms is an issue with sodium - I lose more salts than I should so I have to keep topping it up, especially during hot weather. Does anyone know of any brand of pedialyte or similar in the US that is low on potassium?

I'm pretty newly diagnosed and they are trying to keep my steroid dose low and symptom manage at the moment to prevent other side effects but any comments would be great.

 

[jmkrat]

Hi,
I have Addison's Disease too. I was on steroids for awhile and it helped my sodium and potassium level quite a bit. My potassium level became low enough that I didn't need to worry about extra potassium. So did the sodium level. How long have you had this? Keep getting blood work done and see if your levels improve. If they improve enough you may not have to worry about consuming potassium. Ask your doctor to be sure only he/she will be able to tell you how safe it is to consume potassium and how much is safe. Good luck

 

[MsSpinShady]

Hi! Does your doctor have you on fludrocortisone (in addition to your cortisol steroid replacement)? That will help balance the salt/potassium.

 

[Heva2015]

No - I take hydrocortisone when I need it (if I'm sick etc) but nothing else...the doctors are concerned about over steroiding me if that is even a word because I have weight issues too

 

[MsSpinShady]

If they are only giving you hydrocortisone they are missing a big piece of the puzzle. The adrenals are also responsible for the production of aldosterone, which balances salt/potassium and helps to regulate things like your heart rate, blood pressure and metabolism. One common symptom of a low aldosterone level is orthostatic hypotension (you stand up and feel light-headed/black out).

Ask your Dr to test your renin/aldosterone levels. Simply adding in a small dose of fludrocortisone (aldosterone replacement) will probably make a big difference for you.

Also, have they tested your thyroid? It is not uncommon to have hypothyroidism and Addison's together. That in itself can cause weight issues.

 

[Heva2015]

I will certainly ask them...they are doing a short synacthen test - the second one - next month so maybe that will give more answers.

They have tested my thyroid a number of times but always comes back normal, however, I have all the symptoms of hypothyroidism and my mum has it too so I'm wondering if the blood tests aren't all too accurate...

 

[MsSpinShady]

This webpage gives a good description of the renin/aldosterone relationship and how it is affected by adrenal insufficiency (Addison's): www.labtestsonline.org/understanding/analytes/aldosterone/tab/test

Do you remember what they tested when they checked for hypothyroidism? Did they check Free T3 and FreeT4 levels in addition to your TSH level? American endocrinologists are now realizing that previous "normal" TSH ranges were inaccurate and that a normal TSH should fall somewhere below 3.0 instead of below 5.0 as was previously thought.

I hope you get some answers soon!