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Below are my ITT results. I've been trying to find details on the net about reading or understanding the results but I've had limited luck. Can anyone help. Give some input and name a good web site I can try.

Feb. 21, 8:30 - 11:00 I was taking about 10 or 20 mg of hydro and
1/2 tsp natural
> progestrone cream per day, except on day of the test. I had
stopped armour 2
> months earlier.
>
> ITT
> Glusoce base 86 (60 - 110) before insulin
> 5 more times after insulin was injected = 39, 21, 68, 113, 62
>
> Cortisol base 10.5 (4.3 - 22.0) before insulin
> 5 more times after insulin was injected = 9.2, 9.1, 8.3, 9.5, 12.7
>
> GH base <0.2 (<7.0) before insulin
> 5 more times after insulin was injected =<0.2, <0.2, <0.2, 0.3, <0.2
>
> ACTH base 13 (9-52) before insulin
> 5 more times after insulin was injected =13,12,16,19,21

My main problem is that my thyroid meds make me sick and I feel better without them. My doc looked at the above results, then tested my estrogen (which was also low) and more or less dismissed my adrenals as minor and felt that my main problem was menopause. I think she missed the boat but I want to better understand how good or bad my ITT results really are.
Robin
Hi Lizzy,

Endocrine problems are so horrible to deal with-I am sorry you too are experiencing the confusion and frustration of trying to get answers. The wrost is waiting for appointments and worrying while you wait, too!!

With nonfunctional tumors only, as long as the tumors are considered "microadenomas" (less than 1.0cm) they will try replacing hormones that are deficient first. If you feel good on the medications and regular MRI checks of the tumor suggest that it is not growing...they leave you alone (no surgery). If, on the other hand, you have bad reactions to the medicines or the tumor continues to grow, they will try surgery to remove it.

Our doctor told us that the challenge with surgically removing the microadenomas (tiny ones) is that they often do far more damage trying to get it out that just leaving it alone. If you have a microadenoma, then in most cases it will not grow significantly. Another issue is that, in his experience, just because you are successful in removing the tumor doesn't mean a return to function of the previously damaged cells in the pituitary (the ones that got squished by the tumor).

Of course, if the tumor is secreting something like ACTH (Cushing's) or growth hormone (acromegaly), then it has to go, as it does if it is large or pressing on important structures.

Be sure if they do an MRI of your pituitary that you ask for it with IV contrast (the best method is called "dynamic" MRI for best visualization of things). You'll know they're on the right track if the technicians place an IV catheter when you arrive. If not...ask about it (they forget sometimes). It's also important to be sure on the day of the procedure that the radiology team understand it is an MRI of your pituitary and not your whole brain. These steps help ensure everything is seen as clearly as possible. If nothing is seen by the radiologist...seek a second opinion from a pituitary expert. Radiologists are NOT very good (for the most part) at looking at pituitaries. They missed my husband's tumor twice and it is a story I have read over and over on support boards. It was the pit expert who could see it. We learned this one the hard way (and after about a year of lost time).

Good Luck...it is already great news that they suspect the problem is in your pituitary (well, it is lousy news!! but at least they are on the right track earlier rather than later!!)

Take care,
Sadie
Grace,

I'm hoping that maybe Sadie can offer some comments. I'm clueless. I'm still trying to get somewhere with my ITT results as well. Good luck.

Sadie,

My menopause is based on my high FSH and low estrogen. LH? But I keep asking the question as you did...is it really meno or just a symptom. I have typrical meno symptoms however, these symtpoms could also be called typical for almost any homrone deficiency...the symptoms are mostly very sim. It seems that my thyroid meds caused the meno...doesn't make much sense to me.

Robin
Hi Grace,

Sorry for not answering sooner...I've had a couple of really bad days here. Doctors are driving me crazy. I just want a diagnosis! I am so tired of doctors not even trying to lift a pinky finger. The always manage to say the the doc before must have done a thorough job or that the specialist x I am about to see will surely have more information than they can offer. TURF! I feel like a football on a Sunday afternoon at the NFL. When did doctors get so dang lazy?

It was my understanding that you needed to stim above 18 (minimum) for an ITT. I have read other papers that use 15 as a cut off for the high dose ACTH stimulation test but I think you will find plenty of doctors that would disagree-especially if you are symptomatic.

The same applies for growth hormone. Some of the more conservative institutions say 3 is the cutoff--I think it came from a research paper out of MGH in Boston. Our local endo told my husband he was so happy to report his GH stim was normal at 5.6. It turns out that most insurance will cover GH if you stim to less than 5.0. We figured he was borderline. When he talked to his official pituitary doctor, he was unequivocal about it all-he said my husband absolutely needed growth hormone and that it was indicative of the chance of other hormone deficiencies. He completed all pituitary testing and found he was not making any pit hormones. Insurance has been very cooperative so far.

In the long run what matters more than the numbers, borderline or not, is what your symptoms are. If you feel the symptoms that fit with the deficiency, (and you must because you have gotten the right tests!! : ) ) then you need to seek another opinion. Generally, the only people who know squat about these test results are those who truly specialize in just pituitary diseases. Our local doc advertises an "interest" but that is not the same thing. It is worth traveling to find, if you need to (and we sure did). Please don't give up-you are entirely justified in your wanting to fight for this and the drugs will help you feel better.

Hi Robin! I'm happy to hear back from you. So, your MRI didn't show anything? Many times tiny tumors don't appear the first time around-it doesn't make them any less damaging. (My husband's is only 3mm) It does sound like you got contrast, but even then up to 30% of tiny tumors are missed. The other vital factor is WHO is reading your MRI. One thing to consider is sending a film copy of your MRI to a pituitary surgeon in the United States. They usually like a written history, copies of your labwork and a copy of the MRI (the films, not on CD). They will charge you but it's often less than $200 American dollars. That way you get a really good opinion on your current MRI. It could be you need something called a "dynamic MRI" which is where you have contrast injected AS the MRI is done, rather than all at once before they slide you in the tube. It gives a much more accurate picture of your pituitary. There are several really famous neurosurgeons who will do this by mail. I would do a search for pituitary surgeons who specialize in Cushing's disease and see who pops up. (I'm sorry--maybe I screwed up here-did you already have a tumor found on your MRI and I have forgotten?)

I really think that your issues are due to your pituitary disease. I'm sure low estrogen is just exacerbating things but I doubt it is causing the problems. My husband had to get on one hormone at a time because his doctors were much like yours-they had tunnel vision and couldn't see the big picture. I really know the frustration-I am experiencing it myself right now. Estrogen is so important for protecting your heart and bones, especially since your are so young, so hopefully you can get it from the current doc and then quietly move on. (they have topical creams in Germany, right? They wont interfere with other hormone testing in the future)

It is so hard to know what is the root cause of your pituitary disease. You are too young to be menopausal so what is causing it? You are still quite a bit younger than your sisters, though, aren't you? There must be a way to test for antibodies causing damage to your ovaries. Since you have strong evidence of Hashimoto's hypothyroidism, it is definitely possible. There are also some papers written about autoimmune destruction of the pituitary gland, too. I don't think there is any way to prove it-it's more a diagnosis of exclusion (no history of head trauma, no tumor, no empty sella syndrome, etc)

If autoimmune ovarian damage is not evident, then I would really push to get the alpha and beta subunit testing for FSH to see if a pituitary tumor is putting out FSH. That would be a way to explain everything else being low but one thing high. It also completely depends on where the tumor or damage is-it can be very hit or miss. Perhaps it is a shot in the dark but If that is the case, there is a chance you could have surgery to remove a tumor and get better. (I don't know how FSH secreting tumors are treated-I'm just guessing there)

My husband's history was equally confusing and it was what tripped up so many endocrinologists along the way. He had testicular cancer and radiation therapy as a teenager. He shouldn't have had damage to his testosterone production or fertility (no chemotherapy was used), yet he did. All of the docotrs said that was the cause but it never made sense to me-his slightly high FSH kept dropping like a rock. When I asked-they never seemed able to answer our concerns. I kept noticing his FSH and LH were too low but the doctors just saw that they were in 'normal range.' In the face of low testosterone, that is really abnormal. Try a search under the terms good and hormone and health and see what comes up.

I'm sorry for your continuing nightmares. You both will find answers and a doctor who gets it. Don't give up the fight. (I say to you as I want to just bash my head against a brick wall if I have to see another doctor!!)

Take care,
Sadie
Sadie -
I too am so sorry about the doc's. I know the feeling, but I am sure that you and your hubby have been dealing with it a lot longer. It get's to the point where your life seems consumed with dr's, and that is so frustrating!

Thanks for your adivce! Do you know if there is a credible source I could search for online or something (or website approved by mod?!?) that would give me copies of the reports you are talking about? How did you find them? I would love to take them with me when I get a 2nd opinion!

If you don't mind me asking where are you from? I am in the midwest, and as it is I am driving 2 1/2 hours to my current endo. I am going to search and see if there are specialists "nearby" but I don't know where to begin! How do you know if they specialize in pituitary function? I really want to get a 2nd opinion, but have no idea where to start!

As far as symptoms go, I have no idea what is from what. My endo is convinced that I have PCOS (even though I have had other dr's disagree!) and so it seems like he is totally focused on that and not on my true symptoms. Anyway here is a short list:
- constantly fatigued no matter how much/how good the sleep is
- some headaches, usually about 2-3 times a month I get a debehilitating migrane
- unexplained weight gain - one week I ate about 500 calories a day because I didn't have an appetite, and that week I gained 3 lbs!!!
- "unexplained" infertility (have had laporoscopy to rule out any physicial reasons and it was all clear!) - this all really began last year when I had a miscarriage. I get my period about 3 times a year on my own
- Go between hot and cold flashes especially at night
- very moody, I get depressed very easily sometimes
- side aches. My current endo said that wasn't related to my adrenals because "people with adrenal dysfunction don't have side pain"... I have no idea what it is, but it gets really annoying at times. It is located around my kidneys, a little below
- I also seem to catch any germs/ illness very easily. I am sick with stomach flu type stuff really often. ?!

Anyway this isn't a full list, just all I can think of right now! :) I don't know what the typical sypmtoms of pituitary dysfunction are if there are any!
Also - since you were talking about MRI's ... before my general practitioner refereed me to my endo (he refered me because of a consistiantly low IGF-1, which ironically he seemed to have good levels for since he said anything under 5 was low...) anyway, he had me do an MRI, but they just did a basic head one, not the one with injections or anything, in fact I don't even know if they looked to closely at my pituitary gland?!?

Grrrr.... I am so frustrated today!!!!
Thank you so much though for all your information! I thought my levels were pretty low...

Thanks!
LM
Hi Grace!
I certainly know those symptoms! I have most of them. I was gaining weight like you for a while but now I have stabilized for a bit. I have the side pain. I think what you are describing is flank pain and many people with adrenal disease also have it. Unfortunately, it is yet another one of those symptoms that aren't in the textbooks, so doctors don't recognize or acknowledge it.

You said something that is a big clue to me...your doctor thinks that you have PCOS. Does that mean you have elevated Tesosterone levels? FSH/LH ratios out of balance? Do you also have low estrogen? Do you have insulin resistance or early diabetes? One thing that doctors don't seem to tell you is that PCOS doesn't directly make you have any of the symptoms you have (except infertility) unless you have out of control diabetes. It doesn't make you tired and unable to sleep, give you pain in your sides or any of the rest of it. It is a silent disease. BUT- there are many women with your symptoms, getting the PCOS story-that actually have something called Cushing's disease. Another tip off you have more than PCOS is the growth hormone deficiency. Something is wrong and your doctor isn't getting the big picture at all. That is sooooo frustrating.

The symptoms you are describing are usually one of two things. They are either growth hormone deficiency (which you already know you have) or it can also be Cushing's disease (which often comes WITH growth deficiency as a part of it). The two are difficult to tell apart. What I understand is that if you have skin problems (like more acne than you used to, red flushed cheeks, thin skin that you can see your blood vessels through, pink or purply stretch marks on your inner arms, legs, belly or breasts, sometimes inside of knees) those are quite specific to Cushing's. Sometimes it is so hard to know which is wrong and our doctor believes in trying a trial treatment with growth hormone. If you get better-well, there you have it. If not, then something else is wrong.

When I mention Cushing's, I am talking about a disease in which your body produces too much cortisol. I know you were just worked up for Addison's and your test came back lowish but that just about sums up how confusing Cushing's can be. In most cases, the disease is caused by a tiny benign tumor in the pituitary that puts out too much ACTH, which then stimulates too much cortisol. For others, it is because of a tumor in the adrenal gland itself making cortisol on its own. (For a few, it is a tumor elsewhere in the body that makes ACTH.) Those tumors will episodically make their hormones, especially in the early stages. So because it only sometimes makes hormones, you have different symptoms depending on what it is doing.

If the tumor is 'on' you will often feel better because cortisol makes you feel energetic and covers up pain (it also makes your immune system weak so you catch colds more). You may have worsening insomnia or irritability-like you've have 60 cups of double java. On the days the tumor is "off" everything shuts down suddenly and you may feel like you have been run over with a mack truck. Achy and sore, headaches, moody, loss of appetite, nausea, dizzy-everyone is different but those are when you feel like you have Addison's disease. If you test during an off time, then your tests may look like you have Addison's (which yours did).

They call this kind of cushing's early, mild or cyclical. The challenge is that there is no good test to definitively rule out the issue. You have to just keep collecting urine or saliva samples to measure the free cortisol in your body until you catch one that is high. That can takes months or even years-depending on when the tumor is on or off. Other things that help point that you are on the right track is your history (good days, bad days being part of it-I call it highs and lows), and if you have other evidence of pituitary damage (like low TSH and low IGF-1/growth hormone, low estrogen). Some people have these with Cushing's others do not. Those things will also come and go in many cases because they are mediated by the steroid levels in your body.

The challenge with early Cushing's is that you really need a doctor who gets the fact that the tumor turns on and off. For some reason, in spite of much clear cut documentation of this fact, it really freaks out doctors. If you test high three tests in a row and then one comes back normal-they are all in a dither about it. Those are not doctors who will likely help. You need a definitive doc who understands it wont get better until the tumor is out. Of course-these ideas are just that-ideas of things to explore. Endocrine stuff is far more complicated than I could have ever imagined and nothing is ever black and white (something I wish doctors in this field understood better).

For the growth hormone stimulation test results, I would look on entrez pubmed for research abstracts. They have a search engine just like any other site. Enter insulin tolerance test and growth hormone deficiency, or arginine stimulation and growth hormone deficiency. Much stuff will come up-try to stick with reports out of large american institutions so that your doctor will pay attention to them. (They can be such research snobs) For the Cushing's stuff enter both the terms cushing's and help into the big G search engine and see what pops up-that first hit is an excellent resource and one I use daily. You will find pituitary specialist names and hospitals, etc along with bios of folks just like you.

My doctor thought that I had Cushing's initially (then it was Addison's, now it's 'I don't know'). That's why I have researched all of this. I still am not sure what is wrong with me-if I do have Cushing's I have been in an extended low (like about eight months' worth) so I don't know if I am on the right track. In the meantime, I am seeing other specialists depending on my symptoms, trying to get someone who sees the big picture. So far I can't believe how little doctors want to think about someone like me. I know I'm not an easy answer but it seems it could be a real sense of accomplishment to help me...I guess they don't think it's worth it. I will continue my search until someone listens.

Hope that helps and please know I understand what a nightmare this journey is. Take care,
Sadie
Hi Sadie -
Don't have long to post, but I thought I would also throw these out there, especially since you mentioned LH/FSH ratio.... I had these run at the end of January of this year, and I posted the following on an old thread:

[QUOTE] have told my "story" previously on the boards, but to re-cap... I have been seeing my dr because of classic hypo T symptoms, and he ran a TRH test, which was low. He referred me to an endo, and he ran a slew of tests... here are the results:

2 Tests in Question:
- IGF-1 : 125 (182-780) low
- Cortisal: equivical? Don't really know more about this one....

The dr. wants to do a Insulin Tolerance Test in the hospital if my insurance approves it.... but I am curious what the remaining labs might mean:

TSH - .76 (.34-5.6)
FT4 - .8 (.6-1.6)
FT3 - 5.2 (2.4-6.8)
The following have ranges according to me being mid-cycle
FSH - 6.1 (5-22) low-ish, but "normal"
LH - 8.7 (24-105) low
Prolactin- 17.18 (1.39 - 24.2)
Esterdial - 72 (94-508) low
17-Hydroxyprogesterone - 59 (100-250)
These two have ranges according to being pre-menopausal:
Free Testosterone - 7.4 (1-8.5)
Total Testosterone - 36 (15-70)

After she read these to me, I questioned her as to why my endo wrote these off as "normal" if at least 3 of them are lower than the lab range for being mid-cycle!?! He may not have remembered us discussing that I was mid-cycle in my appointment, but wouldn't he at least ask before declaring them "normal" ?????
BTW- I have been dealing with infertility for the last 1 1/2 years, with one miscarriage, so obviously I am very curious about these low labs......[/QUOTE]

Does this clarify things? What do you think?

Thanks!! LM
Sadie -
It's been a bit since I've gotten back to you, but time flies when you are busy and sick! :rolleyes: I suppose you know all about that!!
I haven't had a ton of luck finding articles from here in the US about the ITT. I want to see what some other well known hospitals have as their cut off for cotrisol and growth hormone levels. Hopefully I will find something!
As far as cushings goes - I hadn't really thought about it before you mentioned it. My TSh and FT4 have consistintly been low - but not quite low enough because the were still in the normal range - sometimes only by .15 or so the only medicine I'm on right now is Metformin (or Glucophage), which I just started about a week ago. They have me on it for PCOS, citing reports that it helps women with PCOS loose some weight and regulate periods. We'll see.

As far as your question goes, I don't know of any insulin intolerance or elevated blood sugars...the only thing is that I am on diabetic meds for the PCOS like I said above. However, when I have had my blood sugar tested, it is always on the high end, not quite diabetes, but close. Also, my blood pressure as well as my body temp has consistantly been low since I have gotten sick. My basic temp used to be 98 or 99 degrees, and lately, normal for me is 96 or at the highest 97. Kinda weird.

Also - since my last post, my endo has pretty much written me off. I was oringinally referred to him by my general practitioner, and after the "normal" ITT test, he has refered me back. So my doc here in town called and we set up an appointment in a week to go over the endo's letter and test results. So I guess I am done with that endo?!? What I could really use is some good advice about what to say to my dr. He is just a general practitionar, but really nice and pretty open to my symptoms. He is the one that originally had the wisdom to run the IGF-1 test that got me the referral. Anyway, what do I do? Do I ask him for another referral for a second opinion? Do I walk in with documented findings about my low, but supposedly "normal" ITT levels? What do you suggest?

Also - you asked about MRI - I did have a general one, but not a pit. one with contrast. I had to push for the first one, so I don't know how excited he will be to do it again?!

Sadie - thank you so much for all your guidance! It is so apprecited! How is your quest coming?

LM
Grace,
I'm in a similar boat as you but maybe a few steps further. Somehting that you might find useful is Dr Rind. He has a list of symtpoms 'metabolic scorecard'...I found this helpful and interesting. Also, he has a lot to say about temps. If your temp is low but stable it means thyroid problems. If you temp is low and unstable this means adreanl problems. I'm testing this idea out myself at the moment. I can't say for sure if this temp thing is real or a bunch of BS but I'm open to most anything these days.

I'm still trying to figure out why menopause started shortly after starting thyroid meds. Several docs are telling me I must take estrogen...this scares me. But just to be safe I'm doing lots of research. So far I have learned that with natural of synestrogen it may have side effects if taken with hydro or armour.

Regarding ITT test result info..I also struggled to find any hard info on the net.

Good luck
Robin





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