MDJunction - People Helping People
 
Ask a Question
02/29/2012 08:09 PM

Hypopit Could I get some views on adrenal function(page 2)

talessandra
Posts: 37
New Member

Hello,

Just wanted to stop in and thank all of you that have responded and tried to help me out with all of this. I had an upsetting appointment with my endocrinologist this morning and am not feeling very well. I'll do my best to respond to posts over the next couple of days.

~Alessandra

Reply

02/29/2012 10:21 PM
hypomama
hypomama  
Posts: 772
Member

Oh no! I am so sorry. When you are ready to share, we are here to listen. Many of us have had bad experiences. Hang in there and don't give up.

03/01/2012 05:13 AM
ButtonButton
ButtonButtonPosts: 1209
Member

Oh, no. I am so sorry, too, to hear that you had an unsettling appointment with your endocrinologist.

I remember all to well the umpteen visits with rheumatologists and neurologists in trying to exact a diagnosis for what turned out to be an auto-immune condition (mixed connective tissue disorder). The diagnostic pathway was not clear and I oft left appointments feeling discouraged.

Know that many of us here have had less than optimal experiences with medical care/attention in arriving at a diagnosis. We are here for you in what ever way you may need. Listening, support, encouragement, a soft shoulder to lean on.

Take care and be gentle with yourself,

- Karen -


03/01/2012 06:31 AM
ITeach91
ITeach91  
Posts: 1872
VIP Member

I definitely agree. So sorry you are going through all this, I lived in borderline land for years as well and know how frustrating it can be. Find a second, third, fourth opinion but keep going until someone gives you some answer and some treatment. You deserve the best life you can have, and don't delay because I truly believe there is help out there for you once you find someone who will listen to your symptoms.

Deb


03/02/2012 04:33 AM
talessandra
Posts: 37
New Member

Hey Bob,

I think you understand some of this on a much deeper level than I can at the moment.

In my case, MRI, and levels of pituitary hormones, hasn't led my current endo to hypoadrenal diagnosis or an inclination to treat me for anything other than DI.

I am curious what you mean about a possible need to run hypothalamus testing. How would that apply to someone in my situation, wouldn't upstream function presumably be okay?

Well, yes, I also think that given my history we could take cortisol measurements out of the spotlight and focus on symptom abatement by treating and monitoring with BP and metabolism measures. My endo, unfortunately, does not.

Going through my records, I do not see any differential diagnosis of ACTH and Cortisol together. It is possible that it has been done and I do not have the copies, but I don't see any tests of ACTH.

To my knowledge I have never had an IIT or GIT. I had glucose testing when pregnant, which made me pretty sick and faint and came out, bet you can guess!... borderline. They had me come back in and the results were again borderline, and they wanted to do a third test, but I asked if I could just do whatever they would recommend for gestational diabetes instead. It amounted to not having juice without food and sucking on hard candies all day. Ridiculous.

If only my endo would act like a scientist.

~A


03/02/2012 04:45 AM
talessandra
Posts: 37
New Member

So, as I said, I had an appointment with my endo and it didn't go well. It was supposed to be a follow-up to discuss the recurrence of tumor and a growth hormone stimulation test, both results which he had sent to me in a letter. And I was intending to ask him about any other tests we might want to run before I started the HC.

He asked how I was feeling and when I told him he said that he was sorry to hear that, but that all my labs looked good.

I reiterated my symptoms and their onset with the original tumor and subsequent surgeries and asked if it was possible to have hypofunction that might not present as gross deficiency; possibly from damaged pituitary tissue; pressure from residual tumor or tumor re-growth; or from a bent stalk (all applicable to my tumor presentation)…

He said "Yes, of course, it's possible... anything's possible." But that he had no way of knowing that, or how to treat it if it were the case. He reiterated that my labs indicate everything from an endocrine perspective is fine and that he felt any one of my symptoms might come from other health concerns.

So, I took a deep breath and told him I was not trying to be argumentative, that I just want to get to the root of my problems so that I can feel better. He said he didn't feel I was being argumentative and he applauded me for taking an active interest in my health, but reiterated that my labwork did not substantiate an endocrine base for my complaints.

I pointed out that the most noteworthy items in my health history are recurring pituitary macro-adenoma and its resultant surgeries. My husband made the case that someone might fall outside a lab norm and still be ill.

My endo conceded that lab norms and populations absolutely can miss people who don't fall in the bell curve, but said that it was beyond his comfort range to treat me with any hormone replacement.

Then he reneged on the Cortef and told me not to start it.

He said I should continue to look for other possible sources of my health concerns with my primary physician. He offered to write to a colleague who has experience with research on testosterone replacement in hypopituitary women to see if she would see me, but said it would probably take a few months to hear anything about that as she is very busy. He told me to come back in 6 months.

~Allesandra


03/02/2012 01:06 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Allesandra

Sorry kinda long.

I tend to take a system flow approach to problems solving. In other words find out how it works, then apply out of normal range parameters and see what happens. The endocrine system is a very complex bunch of flows and levels. I don't profess to know all of it by any means, but I am well aware that flow knowledge is a very important diagnostic tool. For AI I "inject" failures of certain parts of the system. Lets say that for some reason the pituitary receptors of cortisol level info suddenly produced less ACTH than it use to. What would happen? Of course the worst direct effect is less circulating cortisol. There will also be less aldosterone and less DHEA. We now start to get into ripple/downstream effects like lower blood glucose from the low cortisol, less body water from the lower aldosterone and less sex hormones from the lower DHEA. This can get to a humongously large overall effect in a very short space of time. To add to the problem, what then is the effect of treating the ACTH loss? For most of us that means taking a replacement glucocorticoid. Might sound simple, but that will now lower ACTH even more, thus lowering aldosterone & DHEA, but Cortisol is (hopefully) no longer a problem.

The best form of testing is to compare a before and after snapshot. Of course that's real unlikely for most of the more rare hormones. You'd be lucky to just have some thyroid data. They therefore have to rely on statistical likelihood and start a hunt based on probability. It's also tempered by cost. In fact it often becomes a trade-off between time and cost.

And I am sure you know all this! <grin>

My thoughts on the hypothalamus side are yes you could test the pituitary hormones instead and drawing on probability, make some assumptions. Given however that you had a growth there you may find that the more data you have the more accurate the picture is. Of course that may all be academic given that you'd still treat with the downstream steroid! Once again it will be a trade-off and a judgment has to be made as to how useful it might be.

There won't be a differential DX on ACTH/Cortisol on the lab report. It will be a doctor interpretation. In my past, docs have drawn circles around the two (or more) test results and joined them with lines.

It seems you have struck a narrow and pure science endo. They seem to be common in their outlook that they lose sight of the actual debilitating symptoms. Despite the fact that the answers you got weren't so helpful the important thing you did discover is that your case is out of his knowledge base. He might have reneged on the HC for two basic reasons. He thinks it may do more harm than good and it may get in the way of further testing. In hindsight it might have been useful to take some published papers in that proved more than one case of in range low cortisol, but showing frank AI symptoms. Most of your result seem to fall below the "absolutely nothing is wrong" line, so it may just be a matter of taking that data to your primary, asking for Cortef and even taking responsibility for that. I think the trick is to come up with a calm convincing argument with compelling proof, that you know what you are talking about and that the rewards exceed the risks. I take flow chart pictures with me with big bold arrows coming back from symptoms to root causes!

You however then have to ask yourself what else could it be if it isn't just simple secondary AI? I can't see another possibility myself, but I am AI narrow minded!

Don't know if this all helps!

Bob


03/02/2012 01:37 PM
ButtonButton
ButtonButtonPosts: 1209
Member

Allasandra:

When I read your last post my jaw almost dropped to the floor.

I am so sorry for the manner in which your endocrinology appointment unfolded. It sounds as though the endocrinologist already had formed an opinion of your lab results and his recommendations before you came in. And, despite explaining your pituitary adenoma history and symptoms, he was not going to alter his position.

Eeerrrrr.

The fact that you have had a recurring macro adenoma gives credibility to endocrine dysfunction.

I will tell you, unfortunately, that you are not alone in facing difficulty in the medical system. I was having symptoms of pituitary dysfunction for YEARS. It was only when I had an adrenal crisis that the connecting dots were put together. And by that time the majority of my pituitary function was lost.

I would have liked to have seen your endocrinologist put you on a trial of hydrocortisone to see how you respond. That seems to be a fair and reasonable proposition.

Perhaps your PCP would be so inclined to a trial of hydrocortisone? Do you still follow with a neurosurgeon? What about a naturopathic physician?

Your situation seems to me to be unfair.

Sending hope and prayer your way,

- Karen -

Post edited by: ButtonButton, at: 03/02/2012 01:38 PM


03/02/2012 04:25 PM
hypomama
hypomama  
Posts: 772
Member

What I would be lobbying for is the ITT test. It will show how your pituitary is working.

03/02/2012 05:01 PM
talessandra
Posts: 37
New Member

Yes, thanks all.

Bob and Karen: Your suggestion is exactly how I got the offering of Cortef from my endo to begin with. I was feeling awful, endo said labs all look good, I lobbied my PCP. She went to bat for me and the endo agreed to an HC script.

He withdrew it because he does not believe I need it, or any other hormone, replaced.

My PCP won't give HC to me on her own. She is supportive and pretty open-minded, but she is not well-versed in things outside of mainstream general family practice and she is most comfortable referring out-of-the-ordinary patients to specialists. I see the endo with more frequency than I see her. She doesn't want to tread onto the endocrinologist's territory. She didn't even want to run a full thyroid panel on me because she felt it would be stepping on his toes; I got it done through the NP that does my GYN care.

At any rate, it isn't just the Cortef. I believe that I also need to be on thyroid and sex hormones and possibly growth hormone; and in all likelihood I'll be in for surgery to remove the tumor again in the not too distant future. I need an endo to be overseeing the orchestration of all that.

Bob: Compelling proof would be great. Can you point me to some published papers that prove cases of in-range low cortisol, but show frank AI? That'd be great to have.

Karen: I would have liked to see him follow through on that trial HC, too. But, it is what it is…

Hypomama: No endo has ever mentioned an ITT to me and don't know much about that. What can you tell me?

~Alessandra

Post edited by: talessandra, at: 03/03/2012 05:46 AM

Reply

Share this discussion with your friends:
<< Start < Prev 2 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved