New member questions

[Snowgirl]

I’m newly diagnosed hypopit and I’ve been learning a tremendous amount from your posts. Thanks for all your efforts.

I have several questions in preparation for my next doctor’s appointment. I am a 40-year old woman. Here are the highlights from the labs I have so far. The first 3 sets were ordered by alternative practitioners who never suggested HRT, though the 3rd one did put me on 15 mg of DHEA and 6 pellets of Isocort, which had pretty much zero effect. I’ve been off that now for several months.

5/04 Saliva test

Free Cortisol Rhythm
7 AM - 14 range 13-24
11 AM - 3 range 5-10
4 PM - 4 range 3-8
11 PM – 1 range 1-4
Cortisol Burden - 22 range 23-42
DHEA - 3 range 3-10

5/06 Bloodwork

TSH - .390 range .465-4.680
Free T4 - 1 range .59-2.19

8/07 Blood

TSH - 2.66 range .4-4.5
Free T4 - 1.1 range .8-1.8
Free T3 - 284 range 230-420
Sodium, Serum – 134 range 135-146
Potassium, Serum – 3.7 range 3.5-5.3

24-hour urine hormone profile

Pregnanediol - 1219 range 1450-6140
Testosterone - 3.3 range 5-35
DHEA – 139 range 100-2000
Cortisol – 43 range 30-70
Aldosterone – too late in cycle to be accurate
Estrogens were all in range but I was coming off the Nuvaring so levels may have been affected.

AM neurotransmitter urine test

Epinephrine – 3.6 range 8-12
Norepinephrine – 36.3 range 35-50

2/08 Blood (cycle day 9)

TSH - .840 range .465-4.680
Free T4 - .93 range .59-2.19
LH - 3.75 range 2.58-12.10
FSH – 4.75 range 1.98-11.60
Prolactin – 7 range 2-30
ACTH – 10 range 10-60

Though I’ve had general low energy for years, I also have episodes in which things get much worse. These are usually proceeded by either international travel, a cold, or the feeling of starting to get sick (swollen glands, sore throat) but not getting sick and just losing all of my energy. It can take me anywhere from weeks to months to build back up from one of these episodes. The 5/06 blood work was taken 4 months after a trip to India, which took me six months to get back to my version of normal.

My internist diagnosed me as borderline hypopit. I had an MRI to rule out any tumors. He offered me the option of trying a little bit of thyroid and a little bit of cortisol, but said he would prefer to wait until I was in the throws of a severe episode to start so he can get a better picture of what’s actually going on then. He plans to do an ACTH stim test before starting me on thyroid.

From these forums, I’ve realized I’ll also want growth hormone and aldosterone tests (I live at altitude and have to drink a lot of water not to get headaches; I also have to pee about once an hour and it’s very light in color) before doing anything else, and that I need to start cortisol well before trying any thyroid. Here are the questions that I have:

Do the wide swings in my untreated TSH tell you anything useful?

Does the fact that my T-4 has remained relatively constant in all three tests mean that taking thyroid may not be as helpful for me?

I read on a doc’s site that DHEA is important for converting T4 to T3. Do you agree with this, and think it’s important to supplement DHEA?

How big of a piece is aldosterone in this puzzle?

If it’s ACTH that’s low, why do they give you cortisol as a treatment rather than ACTH itself?

I got some testosterone as part of a prolotherapy treatment for chronic shoulder pain and boy, did that make me feel a lot better for the next couple of days. I read that some think you should deal with the adrenals & thyroid before beginning to address the sex hormones to see if they correct themselves, but since my doc told me that women who have been on the pill have lower testosterone for the rest of their lives, any comments on supplementing with testosterone as well?

Thank you again for your time. It’s very comforting to have someone to ask these questions to.

[Chris Jackson]

Your tests look to be way beyond borderline. I don't use urine tests. Your internist doesn't know what he is talking about. Your group of tests are amoung the worst I've ever seen for hypopit and I've been doing this 5 years. One test after another among the worst I get to see. I rarely see ACTH has low as yours, That alone puts you way past border line. ACTH 30 and below is always secondary AI from what I've seen but I like to include acth stim to make a firmer determination. Your TSH is suggesting secondary hypo, but I use .8 or less as being very certain. Looks like you are primary hypo since one of your TSH test reached 2.66. You do need thyroid antibody testing and I highly suspect you will have thyroid antibodies as the combo of primary hypo and secondary. The wide TSH swings are likely because of antibodies (Hashimotos). In the early stage of Hashi's antibodies can cause thyroid to swing to over production which causes TSH to fall. To bad you don't have free T3 for each time, it would have likely been high when your TSH was low. AI always involves thyroid antibodies and have seen not one exception to this. Tests don't predict how someone may do with Armour.

As low as your sodium and potassium are I'm sure your renin and aldosterone will both be pretty low. Low potassium indicates secondary AI 99% of the time.

That is good to get the acth stim, get acth tested at the same time. Do not start thyroid before getting cortisol properly addressed (see sticky "How to increase odds of success with HRT). You do want Igf-1 and GH tests. I bet they will below.

It's the liver and kidneys that is important for converting T4 to T3. I don't know where he got the idea that DHEA does that.

Aldosterone almost always is an important piece of the puzzle, but is over looked by most doctors including endos.

ACTH given instead of cortisol replacement is extremely hard to regulate.

Testosterone therapy pushes down cortisol and can make AI worse. This and treating thyroid properly can raise estrogen is why sex hormones are treated later.

TRT for women is still in its infancy. You are unlikely to find a doc who precribes TRT to women.

If you aren't satisfied with your doc, find an osteopath (see sticky to help you find one). Where do you live?

You're very welcome,
Chris

[Snowgirl]

Hi, Chris,

Thanks so much for your comments. It’s, um, sobering to hear that my labs are among the worst you’ve seen. Do I get a prize?

I’m in Denver. So far, my doc has seemed pretty open-minded; after doing my own studying, I can see he’s asked a lot of the right questions and has taken time to explain things to me. I suspect he’s being conservative because I’ve been in pretty serious denial about how bad I generally feel (especially since I know how much worse it can get). But I didn’t know enough before to ask him about things like Armour, so I’ll see how that goes after my next appointment.

If you don’t mind, I have a few more questions. I haven’t studied the thyroid forums as much as I probably should have since I’ve been focused on the AI component, so I’m a bit confused about some of your thyroid comments. So I should get thyroid antibody testing to see if I have Hashi’s, and therefore a combo of both primary and secondary hypothyroid? Does having Hashi’s change thyroid treatment?

Also, I read that there can be a problem with taking cortisol if you have a fungal infection. I have a very mild intermittent skin issue... do you have any advice about that?

I’m also curious if you have anything to say about my LH and FSH. I’ve suffered from brutally painful, irregular menstrual cycles my entire adult life (except when on the pill, which did help for a time). My labs are within range, but are they low from your perspective?

I haven’t yet seen much about growth hormone other than comments about the cost and difficulty of getting ins to cover it. If GH is low, at what point to you start dealing with that in treatment?

I know I start with cortisol, then thyroid. When do you start dealing with aldosterone and GH?

Thanks again for your support. I’m still kind of in shock about the fact that I have an incurable medical condition, but it helps enormously to feel like I’m at least armed with information now.

And you’ll be proud to know I’ve got my journal ready.

[Chris Jackson]

"So I should get thyroid antibody testing to see if I have Hashi’s, and therefore a combo of both primary and secondary hypothyroid? Does having Hashi’s change thyroid treatment?"

I said I suspect a combo of secondary AI and Hashi's for you.

"Also, I read that there can be a problem with taking cortisol if you have a fungal infection. I have a very mild intermittent skin issue... do you have any advice about that?"

With replacement dose shouldn't be an issue. Warnings for steroid pretty much are for the high doses.

"I’m also curious if you have anything to say about my LH and FSH."

I don't give opinion generally of womens sex hormones if not menopausal, sorry.

"If GH is low, at what point to you start dealing with that in treatment?
I know I start with cortisol, then thyroid. When do you start dealing with aldosterone and GH?"

HGH is added ONLY after all other hormone therapies have been well addressed. See my sticky ("My explanation of how to be successful in your HRT.")

I am proud that you started your journal.

You're welcome,
Chris

[Snowgirl]

That helps clarify things, thanks.

A few more technical questions:

My doc has ordered the ACTH stim and Aldosterone tests. The PA said it would be done in their office, which makes me think they won't be doing the baseline ACTH first, since that has to be kept cold and they don't have facilities for that in the office. Since my basline ACTH was just done on 5/30/08, will that reading be sufficient? Or does the baseline ACTH have to be done at the same time as the stim?

Also, it's looking like they may not get the test in time for me to do it the first week of the cycle for the aldosterone. If they don't, is it possible to do the aldosterone separately? I'd like to have the stim results before my next appt on the 25th, and am hoping not to have to wait another full cycle if they miss the window.

Lastly, what's the relationship between ADH/Vasopressin and aldosterone? In your sticky, you recommend aldosterone and/or vasopressin testing. How do you decide which to focus on?

If you're starting one HRT at a time, where does aldosterone fit in the following order: Cortisol, thyroid, sex hormones, GH?

Thank you so much for your time.

[Chris Jackson]

You're previous ACTH test is sufficient if need be, but is always best to get it done with the stim. If past the first 7 days of your cycle, wait to do the aldosterone and renin later. Most people don't have a significant problem with vasopressin, so just start with aldosterone. If your urine is clear looking, go ahead and get the vasopressin test. Aldosterone is at least 1/3 responsible for vasopressin production.

The order you listed is right, see my list in the Pituitary Faqs.

You're very welcome,
Chris

[Snowgirl]

That's good to know-thanks.

To clarify my last question - I understand the basic treatment order, but I'm confused about when to start dealing with the aldosterone piece. I noticed in your journal you started florinef while you were still tinkering with Armour. So should I wait until after I start thyroid to start salt/florinef (assuming, of course, I need it) or should I do it after cortisol and before thyroid?

I looked in the FAQ's, but I didn't see anything that related to the optimal time to start florinef. My apologies if I missed it. I've read most of your faq's and stickies several times, but there is a lot to take in. I am very grateful to you for posting so much information, though, even if it does make my brain go fuzzy at times

[Chris Jackson]

I had read that secondaries don't need florinef, but I eventually tried it and then started looking for other secondaries that could need it. That was 4 years ago. I learned pretty quick the books are wrong. Florinef should be done before thyroid. Sometimes low aldosterone symptoms don't appear until thyroid is treated.
If you have symptoms and tests to support you need florinef then do the florinef first.

You're welcome,
Chris

[Snowgirl]

Thank you so much for all your help.

[Snowgirl]

Hi, Chris,

Turns out my doc's office has never done an ACTH stim before, so I may get referred out to a less-than-sympathetic endo for that one. In your explaination, you said one should not excercise before the test, but some docs may ask you to do that. Can you tell me what the precise arguments are so if they ask me to walk around first, I can explain why I shouldn't?

Also, I realized I don't have a clear understanding of how neurotransmitters play into all of this. I know epinephrine and norepinephrine are produced by the adrenals, and mine are both low:

Epinephrine - 3.6 range 8-12
Norepinephrine 36.3 range 35-50.

Are they affected by any aspect of treatment?

What about serotonin and GABA, which I'm also low on:

Serotonin 95.3 range 150-200

GABA 1.5 range 1.5-4

Thanks so much for your help.

[Chris Jackson]

Exercise will may cause normal looking cortisol if cortisol is low or it may lower it from what it ordinarily would be. Do not excercise before the test. Doing so I would be able to give my opinion. The only good the endo is going to do for you is giving you the tests, after that he'll tell you your fine, so why screw up the test for him. I rarely hear an endo say to excerise, so your endo I'm saying is ignorant on this.

Your catacholamine tests suggests total adrenal collapse.

Serotonin can below and AI. Since melatonin is made from serotonin so it may be low. It doesn't seem that GABA is causing your low serotonin or it would be high. I don't know enough about GABA to say why it may be low.

You're welcome,
Chris

[Snowgirl]

Thanks for answering my questions. I don't know that they will ask me to exercise beforehand, but I just wanted to be prepared in case I had to explain why I didn't want to.

It's interesting to hear your comments about the neurotransmitters. I should have listed my dopamine as well, but I didn't realize that was related:

Dopamine 185.8 range 110-175

I'm reading that norepinephrine and epinephrine are synthesized from dopamine, and that dopamine is produced in several places including the adrenals. Does the fact that it's high when the others are low also suggest adrenal collapse?

I'm very curious to get my stim results. When I compare my own experience to yours and others I've read about here, I seem to be doing better than my labs would suggest on a day-to-day basis. But since I haven't had to work for the last few years, I've been able to control my activity level and nap when I need to. It's mostly when I travel or get sick that things get really bad.

Thank you again.

[Chris Jackson]

Your combo of tests is a good example of how you can't assume because the precursor hormone (dopamine) is high that the hormones it breaks down to will also be high. Dopamine is also produced heavily in the hypothalamus. In adrenal collapse, not all the hormones usually are low, epinephrine and norepinephrine are the last to fail after cortisol.

Keep in mind that numbers does not tell how bad someone is feeling. Your numbers could be lower than everyones and not feel as bad as them.

Hang in there.

You're welcome,
Chris

[Snowgirl]

Thanks so much, Chris.

[Chris Jackson]

You're welcome,
Chris