Adrenal insufficiency as cause of ITP?

There is a lot of pseudo-medicine out there saying that most autoimmune illness is caused by adrenal insufficiency. Could this sometimes be true?

Does anyone have experience or know of research showing that adrenal insufficiency can cause ITP, or other autoimmunities?

Has anyone had success treating ITP with low levels of Prednisone that did not cause side effects?

One complicating matter is that the causality can be reversed: autoimmunities can cause adrenal damage. This would complicate research, I would think.

Ellen had one of her adrenal glands removed many (30?) years ago because of an adrenal tumor (a rare form of Cushings). Doctors assumed that the other adrenal should take over, which it eventually did, but perhaps with aging it can no longer keep up. If this is true, a low replacement dose of glucocorticosteroid might simply bring her platelet levels up to normal, without side effects.

Any thoughts?

Whew Rob, you are blowing me away with this one (making me think). I have read blurbs about this over the years, not in direct relation to ITP though.

My thought, unless you can contradict me (you're good at that), is that since most ITP patients use steroids at one point and it does not work often in reversing ITP, adrenal insufficiency is not a factor. Some people do not respond to large doses, so why would we think they would respond to smaller doses? I suppose it's possible that going from the larger dose to the smaller dose could cause additional adrenal insufficiency and patients are tapered off of the lower dose too quickly to supplement the problem. The only way to know for sure would be to do an ACTH on newly diagnosed patients prior to treatment. I would hope though that if this were a prominent suspected 'cause' of ITP or any autoimmune disorder, there would be more research on it.

Your ability to challenge some of the things I say is a good thing! I appreciate thought-provoking discussions and being corrected if I am inaccurate.

One additional thought. The articles that I have read about adrenal insufficiency and autoimmunity were 'blame-all' commentaries that I didn't find very credible. I put as much stock in them as I would an article that claimed that vinegar cures everything. If you can provide something with substance, please do!

I'm, tired & my brain isn't working right so I'm not taking all of this thread in.

I do have one question though - has Ellen any reason to suspect she has AI now? I have a friend who has been diagnosed with it and she is a mess God love her! No ITP however.

Hi Melinda,

Mainstream medicine treats adrenal insufficiency as an all-or-nothing condition, so by the time it is medically recognized, one really is a mess.

The alternative medicine angle is that in this crazy stressful world many of us suffer from overtaxed adrenal glands that produce marginally inadequate amounts of adrenal hormones - cortisol, aldosterone, dihydroepiandrosterone, etc. and this marginal adrenal insufficiency can cause subtle changes, (with of course a laundry list of symptoms, sometimes including autoimmune disorders).

Think about vitamin C. Imagine if your doctor told you were not deficient in vitamin C because your teeth aren't falling out. Everyone knows that if you don't have enough vitamin C you will get scurvy and your teeth will fall out, he might say; but that doesn't mean you wouldn't benefit from more C.

Now to answer your question: Ellen does not have any of the symptoms one would see with full-blown adrenal insufficiency. Ellen does have many of the symptoms that show up on the alternative medicine websites for their version of adrenal insufficiency, sometimes called adrenal fatigue.

Melinda, P.s., ... and she is missing one adrenal gland!

Sandi, I am honored to be the student who challenges his professor!

I agree that the alternative medicine angle on this seems to be way over the top, but I am also well aware that conventional medicine tends to be overly dismissive of differing ideas, especially ones that come from outside sources. I have not been able to find any attempt to scientifically investigate this possibility, one way or the other, from either side of the aisle.

Anyway, I am not suggesting that low cortisol levels are the source of ITP and other autoimmune conditions, all of the time or even often. I am wondering whether this happens some of the time, or even ever at all. Certainly, if anyone were a candidate, it would be Ellen, given that she had one adrenal removed. And she may just be a special case.

So yes, some people don't respond even to large doses, but are there others who do respond, to very low doses? One might not hear from them here, as we tend to hear mostly from the ITPers who juggle meat cleavers while their platelet count hovers around 3,000! But what about the lurkers? If you are out there, I would love to hear from you.

Ellen's platelets are continuing a slow slide at 67k, nearly three months since her IVIG meningitis fiasco (and yes, you were right about enjoying her higher platelets while they lasted!) I think next appointment we will ask for an adrenal workup, and see about starting very low dose prednisone, just to see what happens. I don't know if her hemo will go along with it, though.

Thanks for the suggestion of the ACTH stimulation test - you sent me to the internet on that one! Yes, that should tell the story, if we can get someone to order it.

Rob:

I agree with you there; adrenal insufficiency and adrenal fatigue may be more widespread than we realize. I was really into researching those years ago and ended up seeing an Endocrinologist to find out more. He pretty much sent me on my way within 5 minutes after finding out that I was on Prednisone. He couldn't do the ACTH because the steroids would affect the results. I haven't been off of it since so could never follow up. I gave up because I couldn't prove or disprove anything. The fact that people are often diagnosed with autoimmune disorders after times of stress probably means something, but no one can pin point exactly why.

The problem with things like this is that you can search and find so many things that can go wrong with the body. I've read articles about parathyroid, thyroid, leaky gut, adrenal fatigue, gluten intolerance, etc. and none of those things are readily medically acceptable, meaning you'd have a hard time trying to convince a doctor to treat you for them unless you go holistic. I'm talking about things that do not show up in blood work. I just read an article the other day, no, it was a video, in which a doctor stated that a person can have normal thyroid blood work but still have an under-active thyroid and all of the symptoms. It seemed believable, but unless you go to that doctor, you will not get help.

My latest thing has been Magnesium and the alleged fact that by the time a deficiency shows up in blood work, damage has been done and symptoms can be pretty bad and hard to recover from. Sort of goes along with your Vitamin C and teeth. I can guarantee you that I will not find a doctor to treat my Magnesium level which is at the very low end of normal. I do know that I feel better when I take it regularly and I can't get the level up to mid-normal even with high doses. No one cares but me.

I guess my point is that if you can't prove it, you can't fix it unless you take a stab in the dark.

PS - there are a few people here who respond to low dose Prednisone, but we're talking 10 mg's (which is not really low dose) and their counts do not usually reach the normal level. I consider low dose to be under 7.5 mg's, which is the amount of cortisol that the body produces naturally per day.

Most doctors would not promote low dose Prednisone as a long-term treatment due to the risk of long-term side effects. That is likely the reason that we do not see many patients here who are doing that. I can think of maybe 2 or 3 people here who have used low dose Prednisone for years, but again, it's above 7.5 mg's (as far as I know).

OT - Funny you mention magnesium. Ellen is a registered dietitian, but I had to teach her about magnesium, because the medical community wasn't teaching it then, and still mostly overlooks it. Magnesium is JUST AS IMPORTANT as calcium for maintaining bone density, and the two should always be taken together along with Vitamin D if needed. Where did I learn about it? Let's Eat Right To Keep Fit by Adelle Davis (1954), and finally it's becoming mainstream after all these years.

Ha, I've read articles lately that state that calcium isn't necessary as a supplement and can actually do more harm than good. Magnesium and Vitamin D are supposedly all that are needed to help the body produce the correct amount of calcium. Who knows? There are always tons of contradictions.

Did you know that there are 9 types of Magnesium and it's important to take the right ones? I had been taking Magnesium Oxide for years, which is the least absorbable. I am now taking Magnesium Aspartate, Lactate and Citrate. Magnesium Orotate is the most absorbable. The ones that end in "ide" are the worst and the ones that end in "ate" are the best. Who knew? I had to go to GNC because drug stores do not sell the good ones in my area.

Sandi, of course I have been off double-checking that 7.5 mg/day number you gave for the equivalent amount of prednisone to replace normal cortisol production, and of course you were right! What I don't understand is why it should be necessary to taper starting at a higher dose, sometimes a much higher dose. Even if cortisol production has been totally suppressed, why should the taper dose ever be higher than 7.5 mg/day of prednisone (assuming no unusual stress situation)? Is there some other mechanism at play other than suppression?

Once again, I am responding one post late! I am really glad you know what you are doing about magnesium, giving all the steroids you take. I have spent many hours on the message boards for hip replacement (Ellen's are now bionic, thanks to congenital hip dysplasia) and there were a lot of people there who had their hips ruined - avascular necrosis from steroid use.

It might be worth putting together an article for how to protect against damage from the use of corticosteroids.

I don't quite understand your question about tapering at high doses. People have to taper because if they don't, it can cause adrenal shock that can actually be fatal. The adrenal gland stops working when a person is on high doses of steroids and to bring it back, you have to stop giving it synthetic cortisol slowly.

I don't think there are any true ways to prevent long term side effects. Exercise and keeping bones strong are the best ways to prevent problems but it will not prevent avascular necrosis. We've had a few people here who have had hip replacements due to steroid use. Having yearly bone density scans is the best way to keep an eye on that. If there is a way to prevent cataracts, glaucoma, thin skin, bone fractures, etc....I sure don't know about it. If I did, I'd be doing it. I do see an ortho and an opthamologist regularly (not just because of Prednisone) and they monitor those things.

My question about tapering at high doses is this:
If tapering is necessary because natural cortisol levels have been suppressed, then why would one ever need to to taper at levels EXCEEDING NORMAL cortisol levels. One would think that one could begin tapering at 7.5 mg/day of prednisone, and taper down from that, if 7.5 is enough to completely replace normal cortisol production.

Apparently there is another phenomenon going on and I think I have found it:
Glucocorticoid receptor resistance.
Google it for some really fun reading!

Here is one link I found interesting:
Chronic stress, glucocorticoid receptor resistance, inflammation, and disease risk
Proceedings of the National Academy of Sciences (PNAS)
www.pnas.org/content/109/16/5995.full.pdf
"We propose a model wherein chronic stress results in glucocorticoid
receptor resistance (GCR) that, in turn, results in failure to down-
regulate inflammatory response..."

There's even some research on glucocorticoid resistance causing major depression.
It sure could connect the dots between a lot of comorbid conditions, and help explain the role of stress as a causative factor. Trying to comprehend it at a micro level is way over my head, though.

So, I'm thinking, maybe glucocorticoid resistance is a little like insulin resistance?

My brain hurts... how's yours?

The google-fu is strong in this one. Thanks Rob16, interesting find.
Erica

Actually, it's google-fu:

A disciplined mastery of Google search techniques. A googlefu master possesses many secret and awe-inspiring moves allowing him ultimate access to the most obscure data.

--Urbandictionary.com (via google, of course!)

Erica, I need new glasses... I read what you wrote as google FLU and thought I was the one making a joke. You are way ahead of me on this one!

Google flu:
The self diagnosis of influenza having read the symptoms on the internet.

I have to remember to read all of this later. Have brain fog today and can't 'fu' anything.

Rob16 wrote: My question about tapering at high doses is this:
If tapering is necessary because natural cortisol levels have been suppressed, then why would one ever need to to taper at levels EXCEEDING NORMAL cortisol levels. One would think that one could begin tapering at 7.5 mg/day of prednisone, and taper down from that, if 7.5 is enough to completely replace normal cortisol production.

I think you probably can go down to 7.5 mg quickly and then taper more slowly. The slower taper from high doses is to minimise the withdrawal from large doses side effects and also to maintain the platelet count. Less to do with the adrenals.

Trying to soak this all in.

Was just searching AI vs Adrenal fatigue - found this at the Mayo Clinic site, says regarding adrenal fatigue: "...but it isn't an accepted medical diagnosis."
www.mayoclinic.com/health/adrenal-fatigue/AN01583