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Old 12-17-2008, 11:43 PM   #1
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Pituitary doctor told me to stop HC

I went to see a pituitary doctor in Houston. She clearly saw my ACTH stim test which I failed horribly. I have Secondary Adrenal Insuffiency.
ACTH<5
Baseline cortisol 3
after 30 minutes 13
after 60 minutes 23
She told me I did not have this disease and to stop taking the HC. and then go get another baseline cortisol. I almost fell off the chair. I just did not know what to say. I was sooo looking forward to this. I wanted other tests run as well to see if I am in lack of the other hormones. It has taken a big toll on me. I am serioulsy running out of doctors. I am continuously crying and very sick.
My Tsh was 0.019 (0.45-4.5)
Free T4 2.13 (0.61-1.76)
Free T3 4.3 (2.3-4.2)
She changed me to 137mcgs of Levoxyl and 5 mgs of cytomel.
I said to her look at my results. Can't you see that? You don't have it she said. You wait and wait and hope and hope to see these doctors, and then BOOM.. I am at a total loss.
Has anyone had any good luck with doctors in Houston? I am going to run out of HC soon and I don't know what to do..
thanks....

 
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Old 12-18-2008, 07:21 AM   #2
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Re: Pituitary doctor told me to stop HC

Have you posted on the Addisons Forum? Sometimes it is not too active, but you may luck out and someone there can help you.



PS Just a thought. Did you have your stim while on HC? I had read that one is supposed to be on no HC and wait a period until the possibility of HPA axis suppression has passed. I am not certain about this, but did your dr ever mention whether or not it was advisable to do an ACTH stim while on HC?

Last edited by sparkles916; 12-18-2008 at 07:23 AM.

 
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Old 12-18-2008, 01:11 PM   #3
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Re: Pituitary doctor told me to stop HC

Hi sparkles,
I was taken off of it for two days before the test..
thank for replying......

 
Old 12-18-2008, 03:21 PM   #4
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Re: Pituitary doctor told me to stop HC

Two days isnt long enough from what I've read! Plus, you shouldnt stop HC quickly like that anyway...it should be stopped very slowly. What dosage are you on?
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Total Thyroidectomy Oct 06 due to Massive Multi Nodular Goiter and Hashi
Adrenal Fatigue
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28mg HC
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Old 12-18-2008, 03:49 PM   #5
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Re: Pituitary doctor told me to stop HC

I don't know that two days is enough. I also wondered how much HC you were on and for how long. I don't know that it is correct to take a patient off a replacement dose (e.g. 20mg) all at once, if they were on it for a length of time. I don't know about the protocol if the Hc amount is less, but I have read that tapering is preferred.

About the stim, I had one and read up on it. It seems that if the stim produces a result greater than 18-20, then it is considered that one does not have AI.

Of course there is some stuff out there that talks about how a persons quality of life can be impaired nonetheless. But this is the standard textbook cut off range.

If you werre on a physiological replacement dose (again, 20mg), for a period of time, particularly if you were taking the HC in divided doses, esp in the evening, it is possible, according to what I have read that HPA axis (adrenal) suppression could occur.

Thought I would point these facts out since I had researched them myself due to my own possible secondary AI. Hope this is helpful.

 
Old 12-18-2008, 03:53 PM   #6
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Re: Pituitary doctor told me to stop HC

15 mgs. But with results like these how can she tell me something like this?

Before I was ever on HC and got an a.m. cortisol run (just standard) it came back 3.3..
One doctor says something and then another. These are supposed to be the best in Houston, but from what I have been through, that's not saying much.
She just said, get off of it, It's going to hurt you.
Thanks for replying....

 
Old 12-18-2008, 05:20 PM   #7
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Re: Pituitary doctor told me to stop HC

If you do not mind telling us who SHE is? Is she an Endo? Oleander

 
Old 12-18-2008, 08:02 PM   #8
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Re: Pituitary doctor told me to stop HC

Oleander,
Her name is Morali Sharma. Yes, she is an endo..

Thank you
Mamie

 
Old 12-18-2008, 08:17 PM   #9
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Re: Pituitary doctor told me to stop HC

Quote:
Originally Posted by sparkles916 View Post
I don't know that two days is enough. I also wondered how much HC you were on and for how long. I don't know that it is correct to take a patient off a replacement dose (e.g. 20mg) all at once, if they were on it for a length of time. I don't know about the protocol if the Hc amount is less, but I have read that tapering is preferred.

About the stim, I had one and read up on it. It seems that if the stim produces a result greater than 18-20, then it is considered that one does not have AI.

Of course there is some stuff out there that talks about how a persons quality of life can be impaired nonetheless. But this is the standard textbook cut off range.

If you werre on a physiological replacement dose (again, 20mg), for a period of time, particularly if you were taking the HC in divided doses, esp in the evening, it is possible, according to what I have read that HPA axis (adrenal) suppression could occur.

Thought I would point these facts out since I had researched them myself due to my own possible secondary AI. Hope this is helpful.
Ok.. so you are saying that mine was 23 right? I'm trying to understand.
I was dx because I am not producing enough ACTH from the pit. and that original baseline without being on cortisol, holy cow, I could not get out of bed.. But I understand about the textbook. It isn't fair. If I stopped this, I could go into failure. I was taking the 15 because of the 3.3 reading. Then I had the stim test and I was on 15 mgs for a month. (before the test)
Thank you for your help
Mamie

 
Old 12-18-2008, 08:33 PM   #10
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Re: Pituitary doctor told me to stop HC

Oleander,
See, I was seeing Arem. I did not reply to that post about him because I just did not know what to say. Everyone has
their own ideas about doctors. When i walked into Sharma's office, this one lady said you will love her. The thing is she was looking at my TSH and I said well since there is a pit problem, my TSH does not come into play here. Then she said you don't have this. And then she said, I also see where these results are coming from. I said what do you mean? Arem? she said yes. I said do you have a problem with this? she said he is dead wrong. I said, I gathered you knew him. She said yes, I studied under him. And then he wrote "that book"... with a smirk on her face.
she did not comment on any of my other labs. It was so quick. I'm still in shock. Just told me to get off of the HC. HE'S WRONG!!!!!.. It was really weird.
I could just be hypo brain fogged, but it seems like it was a competition going on to see if she is right vs him.. And she is playing with my life. Maybe I'm crazy. you had to have been there.. LOL.. Arem is just to expensive and won't talk. You kinda like have to do what he says or else. Now that is the impression I got of him.. Other folks might really like him.. That is why I did not respond. But I guess I just did. just on a different post.
Anyway, he says I have it and instructed me to wear a bracelet. She says no.. OMG..
I hope you don't think I'm crazy.. LOL....
thanks,
Mamie

 
Old 12-18-2008, 08:37 PM   #11
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Re: Pituitary doctor told me to stop HC

Let me try to say it this way. It seemed like it was all about AREM instead of me..
I swear I walked out of there numb.. dumfounded.

 
Old 12-19-2008, 05:46 PM   #12
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Re: Pituitary doctor told me to stop HC

Mamie, looking through my papers, I had found something from a california university medical endocrinology department on the Adrenal Axis that I found on the web. It was very helpful to me...and I think it reflects the mainstream alogorythm for diagnosing AI.

Keep in mind, that alot of stuff I looked through on Pubmed, on secondary AI, showed that it is a more difficult diagnosis, espeically if one does not have complete secondary AI.

that said, what I found says that a AM serum cortisol below 3ug/dl incidates adrenal insufficiency. You wrote in one of your posts that even before you went on HC, had AM serum cortisol of 3.3.

Anything between 3 and 19 requires "dynamic testing", like acth stim test. I think my understanding is that below 3 indicated AI, full stop.

In a stim, the gnerally accepted literature (again mainstream endo) is that a post-stim cortisol of greater than 18-20 ug/dl rules out AI. Also, some use a >7ug/dl rise or doubling of baseline as ruling out AI.

This is not to say that there are not alternative views.

Did you have an ACTH run at this time or prior to the HC therapy? How did the dr establish that you had secondaryrather than primary?

Assuming that you were/are secondary, and your ACTH was below range, I think I remember reading about ACTH deficiency, of course, secreted by the pituitary, which is considered to be related to hypopituitarism.

I think there are pituitary function tests, I do recall reading about CRH (corticotrpopin releasing hormones) being administered to see the blood levels of ACTH in response.

This is about the limit of my knowledge. I do know that there is more out there for you. I do worry about your recent endo 1) giving you a stim test so soon off HC; 2) taking you of HC wihtout a taper 3) overlooking your prior AM serum cortisol of 3.3

I would definately get another opinion ASAP.

PS Can I ask why you left your first dr who put you on the HC?





Quote:
Originally Posted by mskmal View Post
Ok.. so you are saying that mine was 23 right? I'm trying to understand.
I was dx because I am not producing enough ACTH from the pit. and that original baseline without being on cortisol, holy cow, I could not get out of bed.. But I understand about the textbook. It isn't fair. If I stopped this, I could go into failure. I was taking the 15 because of the 3.3 reading. Then I had the stim test and I was on 15 mgs for a month. (before the test)
Thank you for your help
Mamie

 
Old 12-19-2008, 08:08 PM   #13
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Re: Pituitary doctor told me to stop HC

Sparkles,
Ok.. I went to a clinic in Houston because I wanted bio-identical hormones. Well, they randomly took a a.m. cortisol test on me. 3.3.. However, they dismissed it BUT gave me cortisol. Told me to take 2.5 mgs and work up to 5 mgs. Did not even want any further testing. I started doing some research and got scared to death. So, IKE came along and I had to evacuate. I called this clinic and asked if I could bump my cortisol up. They bumped me up to 15 mgs. I went to see Arem in October. He saw my cortisol at 3.3 and wanted an ACTH stim test. I was on 15 mgs at the time. He told me to stay off of it for two days. That's when i had the test done. Then he got the results back and had me go for an MRI. So he concluded that I had SAI. told me to just take 10 mgs. could not function on that so I bumped it back up to 15.
I wanted a second opinion because Arem did not want anymore tests, such as aldosterone, renin, fsh, etc, to see if I am lacking any other hormones. ( I hope you read my other post about him and this new doctor I went to see). So, keeping him on the back burner, I went to see this woman. And then she tells me this. He won't talk or answer any questions, he is very expensive, OMG, so now I am at a loss for another doctor who is going to understand all of this and want more tests. I don't know if I am on enough HC or not. But I am very sick right now. Thank you so much for taking an interest in my condition. My main concern right now is I am going to run out of HC.
It's very strange that when I take my second dose in the afternoon, I get very sleepy.
And not to mention, I come wide awake at night and cannot sleep. And then I think I am going to die, and never find a doc and just be like this for the rest of my life. I'm 48.
Thank you again,
Mamie

 
Old 12-19-2008, 11:23 PM   #14
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Re: Pituitary doctor told me to stop HC

I wish there was something I could do for you.......I will ask my Endo who used to work in Houston if he knows anyone there who he thinks is good.....

Oleander

 
Old 12-20-2008, 08:31 AM   #15
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Re: Pituitary doctor told me to stop HC

Another thought for you to find a Doctor who will prescribe is to go to good Compounding pharmacy and ask the Pharmacist who he recommends........he will know who is ordering this test and prescribing........Also you could maybe call ZRT and see if they can recommend a Doctor in your area who orders the Saliva tests for Cortisol ........Just a thought.......Doesn't have to be an Endo just a good Doc that is well educated on this problem. Just a thought.

Oleander

 
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