Doc to diagnose/treat adrenal insufficiency in AZ?

[Critterina]

Hi,
I'm not looking for an ME/CFS doc, so sorry if this is a bit off-topic, but if it wasn't for the help I've got from some of you, I wouldn't even know what I was looking for.

I have a positive test result from an ACTH stimulation test, with low-normal serum ACTH at the time of the test. My endo said the result was negative and referred me to Mayo Clinic without a diagnosis. Mayo Clinic reviewed my lab result and said that they don't have anyone who sees or treats patients for adrenal insufficiency.

I'm thinking to ask my primary care for an MRI to rule out a tumor. Considering taking Isocort, if I can figure out why, in the past, I was told to avoid echinacea (maybe because of autoimmune issues?) and if that's still good advice.

I have leads for docs in Albuquerque, San Francisco area, and Reno, but if there's a good doc in state (I'm usually in Tucson), it would be preferred. Oh, and I'm in the Boulder CO area for the next 3 weeks, so that's an option, too. In the end, a good doc is worth an airplane ticket, so I'm open to any suggestions.

Thank you!!!

 

[minkeygirl]

I was diagnosed in 94 BEFORE ME, with what the endocrinologist called Relative Adrenal Insufficiency, which I later found out was a diagnosis du jour and didn't really exist. He put me on 7.5 mgs Cortef and crashed my adrenals. Subsequently I got a virus and here I am today.

So just be careful with who you see.

 

[Critterina]

@minkeygirl , Sorry that was a terrible outcome!!!

I have better news for me. Finally last Monday I was able to show my primary care the articles that Ema sent me, show him my adrenal issues were NOT subclinical or relative, but documented in my lab results. He finally got it. Next day I asked him to order testing. Next day did lab work (prerequisite) and got insurance approval. Next day had the MRI. Next day saw the results - a tumor as I expected - but fainted twice and threw up. So, without adrenal function, I don't handle stress well, but what's new about that? NO surprises there.

So, I'm taking 7.5 mg prednisone/day and I am functional again. Sorry, but I have been turned down by three endos and they Mayo Clinic. Wish I had recommendations, but I still don't have a decent endocrinologist anywhere in the country that I could recommend.

 

[minkeygirl]

@Critterina Congrats for being persistent. And maybe some things you said explains stuff that i'm going through now. I have been feeling my heart beat for about a week now. Nothing out of control I just feel it.

I had an EKG yesterday and all is fine but I also found out that my my adrenals are not working well and that they are on the same level all day long. I did the saliva test on a day when I was feeling horrible too so maybe it's worse when I'm not feeling bad.

So now I wonder if just life stress (which has been hard the last few weeks) combined with my poor adrenal function is causing/contributing to the heart beat stuff.

First step is adrenal support as prescribed by my doctor. Thanks

 

[Critterina]

Thanks, @minkeygirl !

Minkey, Did your doctor do an ACTH stimulation test? That shows whether your adrenals respond to ACTH. The cortisol number has to rise over 20 mg/dL or 500 nmol/L to be normal. If your adrenals aren't working, either because they've burned out or because (like me) your pituitary isn't asking them to work, so they are atrophied with disuse, the number doesn't go up high enough. My doctor missed this (because I was in the "normal" range of under 20; she missed that it's only "normal" if nobody gave you a shot in the arm of ACTH 30-60 minutes before the taking the sample!) I don't mean to pry, but my trust in doctors is a bit low at this point, on this issue at least. It's important to know this, and what your ACTH level was before the test.

If the ACTH level is high before the test, you have to consider primary adrenal insufficiency which can bring with it hyperkalemia: too much potassium in the blood. If the ACTH level is low (mine was in the lower 15% of the range), and your blood pressure and heartbeat go up, it may be secondary adrenal insufficiency, and they symptoms may be due to not enough potassium. I can drink 3 containers of coconut milk (about 2000 mg K) in a day, and after about 2 days my heart stops pounding so fast. But if you did that, and it was primary adrenal insufficiency, that coconut milk could be fatal.

 

[Soundthealarm21]

@Critterina

There is a naturopathic doctor in Tucson that is very good. Dr. Judy Gianni http://www.naturemedica.net/drjudygianninmd/

Not sure if you're still looking, but that is a doctor that will treat adrenal fatigue. Although it sounds like your doctor has come around to helping. Either way I thought I'd throw that out there.

 

[Critterina]

Thanks, @Soundthealarm21 ,

I don't have adrenal fatigue, which sometimes responds to herbs and supplements. I have adrenal insufficiency (and probably panhypopituitarism) caused a tumor on the pituitary gland in the center of my head, and no amount of supplements to encourage better performance of my adrenals is going to help if the signal for them to work that comes from the pituitary is blocked. From what I think I know, a neurosurgeon who specializes in pituitary surgery will be my best bet.

Yep, my doctor is trying to help. If he can get anyone to see me before the middle of April (that's for the initial consult).

 

[Soundthealarm21]

Okay I understand what you mean. I read about pituitary tumors a while back when I thought I had one before I just recently learned the reason for my HPA axis dysfunction is mold.

Hopefully you can get that removed and your symptoms will clear.

 

[Critterina]

Okay I understand what you mean. I read about pituitary tumors a while back when I thought I had one before I just recently learned the reason for my HPA axis dysfunction is mold.

Hopefully you can get that removed and your symptoms will clear.

Mold! I hear that's a nasty one to treat! Is it from your living situation? Are you in a situation where you can either remodel or move? I know those are BIG efforts. But I had to deal with cat dander, washing everything multiple times, pulling my carpet, painting, having the ducts cleaned multiple times.

Yes, I'm hoping just that: remove the tumor, cure the symptoms. My doc is hoping, I think, for a drug cure. But as the tumor appears to be non-secreting, and blocking at least some of my pituitary hormones, I don't think it would be too amenable to either drugs or radiation. But we're doing hormone testing, again, to be sure. Just cut it out, get it over with.

 

[Soundthealarm21]

No it's not my living situation. Our house is only 3 years old.

My guess is I got it from the swimming pool I worked at for 7 years (Age 14-20).

We're getting the mold out by using high amounts of fatty acids (mold is fat soluble) to mobilize the mold to get it into the liver where it's secreted into the bile and then binding it with the drug cholestyramine so it cannot be reabsorbed.

I'm also getting tested for the HLA-DR genetic defect that makes your body not recognize mold. My doctor strongly believes I have this problem. I see her on Thursday so we'll see where that goes.

 

[Critterina]

No it's not my living situation. Our house is only 3 years old.

My guess is I got it from the swimming pool I worked at for 7 years (Age 14-20).

We're getting the mold out by using high amounts of fatty acids (mold is fat soluble) to mobilize the mold to get it into the liver where it's secreted into the bile and then binding it with the drug cholestyramine so it cannot be reabsorbed.

I'm also getting tested for the HLA-DR genetic defect that makes your body not recognize mold. My doctor strongly believes I have this problem. I see her on Thursday so we'll see where that goes.

Sounds like you've got a pretty good doc on your side, there. I'll say a prayer for you, too.

Thanks for the interesting explanation. I'm not sure I follow the swimming pool connection - would it be inhaled? absorbed through the skin? I can't picture it.

I'm curious, can you smell mold? I am not allergic to any molds (which is one way a body might not recognize it), but any little bit of mildew on the clothes on the person near me on an airplane, any little bit of mold...my nose goes on high alert (one way a body can recognize it) and I can't bear it.

I'm cheering for you to beat it!

 

[Soundthealarm21]

Sounds like you've got a pretty good doc on your side, there. I'll say a prayer for you, too.

Thanks for the interesting explanation. I'm not sure I follow the swimming pool connection - would it be inhaled? absorbed through the skin? I can't picture it.

I'm curious, can you smell mold? I am not allergic to any molds (which is one way a body might not recognize it), but any little bit of mildew on the clothes on the person near me on an airplane, any little bit of mold...my nose goes on high alert (one way a body can recognize it) and I can't bear it.

I'm cheering for you to beat it!

Yes it would be inhaled. I have an idea of exactly where in the pool it would be. There is a grate at the pool that smells HORRIBLE and has smelled that way for years. There could easily be water damaged areas at a public swimming pool.

And thank you!

 

[Critterina]

Just an update: The posts above were from that brief period of time between when the tumor was identified and when the surgeon said it was too small to be causing symptoms. So my hypothyroid, adrenal insufficiency, hypoglycemia, etc. remain idiopathic - meaning know one knows why.