Adrenal Insufficiency Support Group

I haven't been on here in a while but am getting depressed because since I've been on hydrocortisone for my recently diagnosed secondary adrenal insufficency, I'VE GAINED 14lbs and have never had a weight problem. Now my endocrinologist wants to further increase my dosage - does this mean 1) I'll gain even more weight and also: 2) does anyone know if it's the hydrocortisone that causing my body to gain weight or what the hydrocortisone is doing to my APPETITE?(which regrettably has increased!)

And last but not least 3) since I've been diagnosed with SECONDARY adrenal insufficiency, does this mean that one of my vital organs (my cardiac tests have come back negative) is the cause?

I'd love to hear from those of you who have gained weight because of hydrocortisone but have successfully lost it inspite of this drug.

Thank you in advance for your help.

p.s.: I'm also a Graves Disease patient who had her thyroid destroyed via nuclear isotope years ago and has since been on Synthroid to properly treat my thyroid function.

Post edited by: coppertone, at: 11/15/2011 10:08 AM

There are a few mechanisms at work here. The simple answer is that to keep weight controlled needs a lot more thinking and calorie counting effort. You cant rely on the feeling of appetite cues.

To delve into the actual reasons though;

- HC does improve digestion efficiency (ie more BG for the same amount of food). I have no idea how much change this can cause.

- HC tends to raise BG, which is countered by insulin. The starch storage from this is what results in weight gain.

- Feelings of tiredness and appetite are your biggest enemy. Both low and high BG manifest as these. Eating when you are low BG is fine, not when high though.

- Tuning to the diurnal cortisol curve seems to help dramatically. ie remove the peaks and troughs as best you can. It will never be perfect but the gains are still worthwhile.

- With no other change or tuning it is highly likely that more HC will result in more weight. You'll also gain more water/bloat weight. Don't however use this as a reason to NOT updose.

- Thyroid action has metabolic interdependencies with cortisol. It may even be worthwhile pushing your synthroid up a bit to make you more hyper and burn more. If your T4/T3 is in the lower half of the ref range that will be a cue. Get more professional info on this though.

SAI cause is pituitary damage of some kind. Never heard it as sourced from another organ (except for hypothalamus or an autoimmune source)

Bob

Thx so much 4 your quick response. I guess I have no choice but to up my hydrocortisone as directed by my endo dr. I used to exercise and guess it's about time I resume. Hopefully the extra dose of hydrocortisone will increase my energy and decrease my depression and lack of motivation. I would also like to know if there is pituitary damage because of my diagnosis being SECONDARY adrenal insufficiency - if I should ask that tests on my pituitary glands be done. What do you think? Or should I ask for tests on just my adrenals or both? I don't want to be too pushy as I'm on a lowly HMO and don't want to ask for unnecessary tests since I heard that HMO's are limited in how much money they can spend on any one patient or should I just be more aggressive re having it ALL checked out... ?

Thank you so much - you're help has been so forthcoming and prompt and is helping me to already get out of this rut I've been in.... .

Post edited by: coppertone, at: 11/15/2011 12:08 PM

THANK YOU BOB3 BOB3!

I don't actually know your DX history. I assume that you at least had ACTH/Cortisol checked concurrently. That's a reasonable way of determining secondary over primary. Usually though an ACTH stim test is used to differentiate better as well as get some good overall indications.

If secondary is a strong possibility then it is a good idea to get a pit MRI to look for a physical cause. You can also get some good ideas by checking the other pit hormones.

Whether it be primary or secondary too one of the later things you will check is autoimmune issues. I mean you have Graves!

Kind of hard to be any more specific. What you should do in the future is based on what you know now...

Bob

Thanks once again Bob3 Bob3: I will ask for an MRI on my pituatary and am scheduled for a second opinion with a different endo dr. in December. I noticed from your profile - that you suffer from bradycardia and, unfortunately, have a pacemaker.

I was told by a different Primary Care Physician about 5 years ago that I had bradycardia but was not diagnosed with the adrenal fatigue until this year. I'm wondering if they are related - I will also ask about this ... . Thanks again for your consideration and your support.

Cardiac issues and AI can be related. Both these issues were evident in me at DX but the cardio had to wait for the HC treatment to start working before doing deeper testing. In my case though they weren't related so I got the pacer.

I don't know all the possibilities but would assume bradycardia more likely with primary than secondary since hyperkalemia (high potassium) affects nerve conduction. (which ends up as a cardiac electrical issue) Primary often has accompanied hyperkalemia from the effect on aldosterone production. That's rare for secondary.

Bob

Thanks for your response. You're so knowledgable that I feel compelled to ask if you attended medical school? You're very well-versed in all this it's amazing... .

Also - is PRIMARY adrenal insufficiency also known as Addison's Disease? I'm a little confused by this (i.e., the differences between Primary and Secondary Adrenal Insufficiency... .

Hope you have a good day Bob3 Bob3! Thank you again.

Post edited by: coppertone, at: 11/17/2011 04:31 AM

No I am just a self learner. I just go "where I want" and get a lot of fun learning new things. Primarily I have been in IT and telecommunications, but did start in medical electronics.

I should point out that my knowledge is very AI specific. I am not good on general medicine unless there are strong links to understanding AI.

Yes the term Addison's does get confusing and isn't well defined around the world. MDJ people tend to use the more accurate term "primary adrenal insufficiency" (the fault is in the adrenal glands), "secondary adrenal insufficiency" (the fault is in the pituitary gland) or "tertiary adrenal insufficiency" (the fault is in the hypothalamus). You also see the word "adrenocortical" substituted for "adrenal" as well as the abbreviations PAI, SAI and TAI.

Time for some thyroxene! (1AM)

Bob

I think weight must be an iffy thing, based on a number of variables - your meds, your usual metabolic rate, heredity, exercise level, diet, your age (before or after menopause and different sexual hormone levels) - lots of things. I was recently diagnosed with SAI, been taking Pred and Levothyroxine for 2-3 months, and am LOSING weight! I've lost 15 lbs since Sept. I didn't want that, and it has been frustrating trying to maintain or gain weight. Granted, for me it could be I had severe nausea and no appetite for awhile, but the nausea is gone now. I'm focusing on eatting well amd health foods, but still struggle to maintain weight and not lose more.

So I don't think there is one direct cause for the gain or loss - too many things going on.

One thing I do though, is try my darnest to consider the diurnal curve and make sure I match well the timing and dosage of the prednisone I take. I'm alert for any body signs that indicate it is time to dose.

Take a look at Bob's website and the educational posts at the top of the forum. With patience, I bet the more you learn, the more you'll be able to handle changes in your system. You'll be more in control than feeling unable to do anything about it. Just a thought.