All Endocrine Stuff -- Let's Compare, Hash It Out, Etc.

[sue1234]

Okay, I had a lot of labs done at my first appt. at Mayo. I saw an endocrinologist, but he also is sending me out to a neurologist and cardiologist for the POTS. I already completed the autonomic reflex testing portion and a chest x-ray. I have to do a mixed-meal test to see what happens with my glucose/insulin, but it won't be until my return appts. in April.

I had alot of endocrine labs done, and I'm just going to mention the ones that were, well, weird:

cortisol:

--24-hour urine was on the low end(9)

--serum was on the high-normal end(23)

ACTH:

--serum was on the high-normal end(52)

So, with them both on the top-normal end, that's not right. They are supposed to be opposites(one low, one high, etc.). IF they would both be above range, that would be very indicative of pituitary Cushing's. I actually sent a brain pituitary MRI from 5 years ago to a neurosurgeon that reads MRIs for Cushing patients, and he actually said he saw a two areas that could indicate small possible tumor areas, and to see if my cortisol specifically ever gets abnormal with time. Well, it is getting here. So, I forwarded that email out and am forwarding it to my new endo. I've looked back at some posts here and there were actually 25% of poll responders on adrenal function who said they had high cortisol. So, what's going on here?

aldosterone:

--was on the low-normal end(5), and was a 3 a few years ago

renin:

--was on the low-normal end(1.2).

I always wonder why these don't seem to be higher considering I seem dehydrated in my mind. But, then I read on a lab website that in the situation of Cushing's disease, you would have high cortisol, low aldosterone and low renin. So, maybe it's finally all piecing together. Of course, right when I think an answer might be coming, I get told everything is "normal".

I had a protein electropheresis where all the alpha, beta and gamma globulins were 0.1 under the upper limit, and one was over--the alpha 2 globulin. I see it is related to transcortin, and also known as cortisol-binding globulin(CBG), which was not tested.

So, CBG binds cortisol, aldosterone, and progesterone. I find that interesting, but still trying to see how that might all fit into POTS or not. Of course, I can see if it alters the available cortisol and/or aldosterone, that could explain feeling like cr*p!

So, how does the endocrine system fit into all this?? It's actually possible I have a pituitary tumor, and I've read of at least three other people here mention that they have pituitary tumors. I've read about 5-6 others say they have elevated cortisol. I won't find out anything for a couple of months, and time already seems to be creeping until my next appt.!

Oh yea, and I forgot to mention my already possible issue with my ADH always being low. That was not retested, so don't know if it's still low. But I did have to ask for a larger jug when they gave me mine to do the 24-hour urine in. They must not get many ask for it because they had to go to the back and get one. I was a tad conservative with my drinking and still managed 3100 mls.

And lastly, the reason I went was the glucose and insulin issue. I won't have anything to report on that until I go back. But, it seems alot of my endocrine things are just "off".

[CharmedLinz]

Hi Sue,

Pretty much every single thing Endocrine in me is OFF

I've had to ACTH Stim Tests, Both ACTH and Cortisol is always low, pointing towards adrenal insufficiency caused by my pituitary.

I also did a 24 hour urine cortisol once, my cortisol in urine was a 3.

My Aldo and Renin were always LOW before I started florinef, now I can't test accurately.

With those tests to get accurate results you need to be sure to FAST all salt or sodium sources for 24 hours prior. Fast everything but water for 12 hours. Be up and around for 3 hours before the test, and make sure it's drawn right at 8AM.

The 8 AM thing goes for ACTH, Cortisol........and PTH too if you ever get there.

My ADH was always in question, along with if I had diabetes insipidus but we had no way to test here.

The florinef helped the polydipsia and polyuria so they stopped worrying about it.

Just for reference before Florinef I did have my Urine Osmolaity tested once while fasting water for 12 hours which almost killed me, the level should have been over 800 and mine was 136.

Before Florinef, my 24 hour urines, took 3 containers, my totals were always around 7 Liters of output.

Now I've been on Florinef for 2 years my output is about 3 to 4 liters. I have never been under 3 liters. The containers we get here hold 3500 ML and I've always needed at least 2.

As you know I have glucose and insulin problems as well.

Don't know the answers but I did found these articles a while back that I found interesting, and I think all the Angiotensin talk has merit as well.

Seems the Hypothalamus controls both our ANS and Endocrine systems.

http://webspace.ship.edu/cgboer/limbicsystem.html

http://www.psas-support.com/files/Hypothalamus%20and%20the%20Autonomic%20Nervous%20System.pdf

[sue1234]

Yep, in fact, I find this interesting in light of the fact that my alpha 2 globulin levels were slightly elevated: (from Wiki)

Angiotensinogen

Angiotensinogen is an α-2-globulin that is produced constitutively and released into the circulation mainly by the liver. It is a member of the serpin family, although it is not known to inhibit other enzymes, unlike most serpins. Plasma angiotensinogen levels are increased by plasma corticosteroid, estrogen, thyroid hormone, and angiotensin II levels.

Angiotensinogen is also known as renin substrate.

So, I can see where this new endocrine stuff(cortisol, aldosterone, renin) can play into the stuff we are reading about in angiotensin II and its possible connection with POTS. I can see a connection, but sure can't figure it out.

So, has anyone else had an elevated alpha 2 globulin? This is the first time I've noticed having this test, or at least something that jumped out from it.

My tests were all done at 7:58 a.m., so all timely. I did not fast salt for 24 hours, but was on a regular diet. I do NOT normally take in extra salt, so my aldosterone shows how it works on any given day.

Linz, what are they doing about your low cortisol/ACTH?

[sue1234]

Any other endocrine people out there??

[kluesyk]

I have low cortisol, with low ACTH, low TSH with low Free T-4, mid range Free T-3 with hyperadrenergic POTS which all developed following a blow to the head by a horse, so the possible involvement of they hypothalmus is very interesting to me.

I have no tumors that are visible on a brain MRI, only 5 hypersensitive (light) areas bilaterly(not near pituitary). I wonder if I had a bleed after the head blow or just enough disturbance that it set off an autoimmune problem. I do have anti-thyroid antibodies and steriods help me ALOT.

I drive endocrinologists crazy. They have a hard time making sense of my labs. With Addison's your ACTH should be high, cortisol low, and mine is ACTH low, cortisol low which points to the pituitary as the problem. I also have low potassium, not high which is usually seen in Addison's.

My TSH is rock bottom 0.01, but yet I still have symtoms of LOW thyroid. Dr's in the past have dropped my thyroid meds due to the non existent TSH and I have gotten sicker each time until I found a Dr that "got it" that the low TSH points to central hypothyroidism (again pituitary based).

Again, the POTS problem could also be based out a damaged hypothalmus.

My renin and aldosterone are low also as well as sodium, potassium, chloride and magnesium. My kidneys waste 4x the magnesium. (Dr doesn't know why).

I just try to replace what I am missing with the sodium, magnesium, ect. Lately I have been taking more Vit C (2000mg spaced out over the day), quercetin, more magnesium, and taking my hydrocortisone(replacement for Addison's) sublingually instead of orally(I seem to have an absorbtion problem) and have been feeling much better lately.

Never had my ADH tested, the nephrologist had me try a trial of dermopressin(sp) but I had severe migraines with it. I have VERY low urine osmoality and in 24 hr urine test my output was REALLY high....

Since I can't take florinef or dermopression, I take licorice which helps some....I don't run to the rest room as much now.

I hope you have good luck at Mayo, get some answers and feel better soon!

[CharmedLinz]

KLUSYK---- You sure we aren't long lost twins....LOL

I believe my problems arose from birth, I was born blue and have always had left sided weakness.

So a Hypothalamus problem, heart problem, any problem could be from that.

Or it could be from falling off one too many horses. I did hunter/jumper and landed on more jumps than I can count. I have had at least 3 concussions.

My Mom noticed my health change drastically when I went through puberty.

I'm also on Cortef for the adrenals, but I don't tolerate it well so I'm not on as much as I should be.

Though I have to say the day I had the ACTH stim test was the best day I had in a long while, both times. So I wish they could replace my ACTH daily instead of my cortisol.

Same with thyroid, I didn't do well on synthetic, do much better on natural desicated. It was a chore to get a doc to prescribe it with my TSH being low. My internist finally did hoping it would raise my blood pressure and lower my cholesterol if nothing else.

My MRI's show no problems with the pituitary or hypothalamus, which doesn't mean they are working right.....just nothing easy or obvious.....like everything else. Only thing that shows up is some venous anomalies, a mild chiari malformation, and several white matter lesions.

All my Docs and Radiologists are concerned with the lesions.......except for the Nuerologists. I even have the top Otologist/Neurotologist in the state saying it's concerning. No luck yet, maybe in Arizona at the end of the month.

[shoegal]

I have a pituitary tumor, low ACTH + low cortisol but my stim was normal so the endocrine says I'm fine.

I had low aldostrone twice but renin was normal I'm told (do not have the actual result)

[sue1234]

Well, all are certainly you all have odd labs. But, I'm not sure that the endos are pinpointing the problems. Linz and Klue, you do both seem to have a very similar endocrine issue, which does look like hypopit. I'm curious when y'all say you don't tolerate cortef well, how does it affect you? I had my thyroid removed 3 years ago, but I don't EVER seem to tolerate my thyroid meds well. I am on a synthetice, because Armour and the other naturals just make me too hyper, even at lower doses. I guess you could say that the one synthetic that I do tolerate is the "lesser of all evils".

Shoe, how does your doctor justifying that having a pituitary tumor is okay? Did they test prolactin and other pit. hormones?

[shoegal]

They did Sue, it's not producing but could be restricting blood flow, they say to get an MRI yearly, nothing more. My low ACTH/Cortisol is fine to them

[corina]

sue, i haven't got any numbers for you as i've had bloodwork done over the years but they never put 1 and 1 together. i do suspect that my problems could be endocrine related. i've been checked about every 2 years on thyroid (was very skinny most of my life) but thyroid was always good. i had flushing from my mid twenties and difficulties getting pregnant of my second child. i got extra hormones to try get pregnant as nothing else was wrong, which helped and gave me another son! in my very early 30's i was diagnosed with early menopause (???) which explained the difficulty getting pregnant. but about 5 years later i suddenly wasn't in menopause anymore and "normal" for my age, which confused me even more. when i asked my doc how that could have happened he had no answer. i'm 48 now and since a few years i'm post meno pause which i think is a good thing. but i rally don't understand any of it.

i've been on octreotide for a little over a year and i think that has to do with hormones as well (as it is also used in people with growing disturbances) but i'm not sure. it did help me lots though.

oh and of course i've had low blood sugars for years and years, but like other symptoms it comes and goes. right now it's back again.

not sure if this info will be of help to you, esp. as i don't have numbers, just thought i'd add.

thanks for working so hard to try get answers and sharing your info!

[kluesyk]

sue1234,

I just don't seem to absorb my cortef if I swallow it and it goes through my digestive tract. I have recently found if I let it disolve sublingually I actually get it into my system....so something is off in my digestive absorbtion....might also explain the other deficiencies, vit d, magnesium, potassium, sodium, protein is low also....nephrologist keeps telling me to eat more protein, and I tell him I eat protein bars with 19g of protein, take a whey protein shake every day and eat eggs and chicken and fish and I still show low.

I have tested ok on celiac, so I don't think it is that.

Corinna,

I too had problems getting pregnant(had to take clomid) after a first miscarriage. Had gestational diabetes with second pregnancy also.

How did you get your Dr to give you octreotide? How does it help with the POTS?

[kluesyk]

CharmedLinz,

Yes, we do sound very similair!

I do think the head trauma contributed to my problems.

I had a VERY bad reaction to the ACTH stim test. It made me VERY sick. Chest pain, nausea, felt like I had been punched in the stomach, bad left adrenal area pain, very increased urination, weakness and shaking. The left adrenal area back pain and increased urination lasted for several weeks after...not sure what happened. Dr's had no explaination, just would look at me strange and say it was not related to the stim test, (but it happened for the first time during the stim test and thereafter, so YES it is related.) I love how when they can't explain something, it just doesn't exist.

My base cortisol was only 3.9 stimming to 5.9 in 60min (anything below 10 is abnormal) so I was pretty bad. My ACTH was only 16, so my pituitary was not asking for any cortisol even tho my cortisol was only at 3.9. Also my adrenals did not respond much even when given ACTH, so I think I have both components of secondary(pituitary) and primary adrenal insufficiency. I am also low on renin and aldosterone.

My neurologist doesn't seem to be concerned with the white matter areas with me either, said it might be migraines or related to the adrenal failure. I don't think it is the migraines because I had several migraines in one year and the number of areas had NOT increased from one year to the next on the MRI.

[CharmedLinz]

Sue-- The cortef on me acts like a major stimulant, major coffee type rush but worse.

They want me on 20mg a day, I'm able to do 10 right now.

A pharmacist with a lot of expertise in Bio-Identical hormones had me try progesterone instead of cortef, as a rub in gel, I tried an 1/8th of the normal dose and almost wound up in the ER.

She had me then try Prenenolone which turns into whatever hormone your body needs. I tolerated that better in a tiny dose so have stayed on that since it seems to help with the Cortef a little.

Her explanation was that my body had been without cortisol for so long that it doesn't quite know what to do with it.

My Estradiol had always tested extremely low, and my Progesterone had always tested non-existent.

She said that what happens is that your body can't live without Cortisol, but it can live without Progesterone, so your body will actually turn progesterone directly into useable cortisol.

It was a long process to get as bad as I am, and it's a long process to undo.

My last AM cortisol draw was a 12 which is way better than a 1 or 4. My Internist will be happy when it's around 18-25 in the morning, as then I will have some room to play for it to drop when I'm stressed.

I should have mentioned with all the Endocrine stuff that my reproductive parts were NOT spared in this either. When I started menstruation at age 12 things went haywire. I never had a regular cycle, usually anywhere from 20-60 days. Usually only bled for a day. Cramps that would get me close to passing out.

Skipped an entire year when I was 16. Things went downhill with my cycles as my POTS got worse.

My Estradiol had always tested lower than even menopausal. So I had a total complete Hysterectomy last June, 2011. I'm 30. My surgeon was even surprised to find my ovaries all shriveled up like this raisins with cysts on them and cysts in my tubes.

Good thing I never wanted to kids...Someone would have to pay me massive amounts of money to pass this illness and everything that goes with it on to a kid. I wouldn't wish it on my worse enemy. We have other people in the family that have this besides me, so I know it must be in our gene pool.

The surgeon said more than likely I never would have been able to conceive. He said it was early menopause and ovarian failure. His thoughts were autoimmune, pituitary, or endocrine failure.

He was glad he had done the surgery, even though it had taken me a ton of convincing for everyone to beleive that I never wanted kids.

He was really surprised at what he had found. Plus he found other stuff that he couldn't explain but was helpful to my GI doc. We have a heads up on more weird stuff. My abdomen was full of fibrotic tissue and I had adhesions on my appendix, cecum, sigmoid colon, and bladder. He had to cut down a lot of them. It's just another mysterious connective tissue or autoimmune thing because I had never had surgery or injury to cause adhesions or scar tissue.

[corina]

kluesyk, i got the info on octreotide from another DINET member, as it helped her a lot. she sent me info on it and after reading and rereading i took it to my neuro. it took me 6 months to convince him to try it. he finally gave in as nothing else had helped me much and he saw me getting worse over the years (from being sick but able to walk into his office to needing an electric wheelchair and being mostly home or bedbound).

within two minutes of starting the octreotide (subcutaneous) i noticed it worked. my vision got much better (sharper) and i was able to stand and walk. we were having friends over at the time and i could take care of the coffee myself and sit without elevating my feet and talk, it felt a miracle.

i still have issues, i'm not cured but my quality of life is SO much better!