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04/23/2012 09:29 PM

can my body ever make cortisol again?

GrammaB
 
Posts: 9
New Member

Just been diagnosed with secondary adrenalin insufficiency due to Sheehans. a.m. cortisol 0.5; after ACTH stimulation only 10 and ACTH ONLY 5 áfter 30 & 60 minutes. If pituitary not working how will adrenals ever work again?

Why does it take so long to show up? Sheehans caused by severe blood loss in 1979. Have been trying to learn all I can. Does everyone feel like you're dying when in crisis? I am scared.

Taking 10 Mg HC 3x per day but still get weak / dizzy / cant breathe. Also now have high blood pressure....was always low before.

Any help is appreciated. I really need friends.

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04/24/2012 06:13 AM
Footprints11
Footprints11Posts: 391
Member

GrammaB, welcome! Please know you're not alone here. We're all in a similar boat and looking for answers and health control, and share your fears, as well.

Let's see....help. Well, just for your own sake, you will want to document all testing results from here on out (including what you have in the past) so that you can see trends in improvement or dips or whatever. So, to that end, (I believe you that you're SAI, or secondary adrenal insufficient) your numbers are a bit confusing. You should have a baseline ACTH and cortisol (.5); and then after stimulation, you should have 30 and 60min *cortisol* levels. That's because you're stimulating the adrenal gland to produce....well, however much cortisol it can. You would not need/want an ACTH level because that's "higher up the food chain". So grab a binder and start filing test results, temp charts, whatever you accumulate, stuff in there. I also will write out notes from conversations I have with docs over the phone, etc., and stuff them in there.

I know what Sheehans is, but do not know about recovery of the pituitary after the fact. However, I can only imagine that the initial event that resulted in so much blood loss was pretty terrifying to you. I know from personal experience that having been through a crisis, there's an enhanced level of fear that something like that could happen again, which kind of potentiates the fear we experience now. I experienced status epilepticus-prolonged seizures while unconscious-years ago and when I feel really unstable, it DOES flit through my head and enhances any fear I might be experiencing. Doctors don't get that. I hope that's not true for you, but wanted to mention it in case you do.

BUT on the upside, the more you learn about SAI and how to manage it, and how to recognize your symptoms, the safer and better off you will be. So you are DEFINITELY doing the right thing in coming here! Smile

Also regarding the dosing schedule you are taking (and I just wrote this a few days ago for someone else, again proving that some of us here are going through the exact same things even at the same time!)......cortisol has a circadian rhythm in our bodies, highest in the morning and lowest in the evening. Therefore, most of us take a higher dose of our replacement hormone of choice (mine is cortef) and lower dose(s) across the day. A flat circadian rhythm (ie same level of cortisol) across the day can also cause problems (and apparently high replacement cort at night can cause problems at night, as well). So one suggestion would be to ask your doctor why he suggested the dosing schedule he did: is it for a short time to give your body a "jump start" on replacement, and then he'll change it?

{{hugs}} The people in this group will be able to help/support/encourage you through this!


04/24/2012 10:56 AM
GrammaB
 
Posts: 9
New Member

Thanks for the hugs & encouragement. The test I had was to stimulate the ACTH to see if the problem began in my adrenals or at the pituitary level. This test was done before the Sheehan's diagnosis. A baseline was taken then I was injected with cosyntropin to stimulate ACTH; then tested at 30 min and 60 mins. This is what happened:

Baseline: cortisol 4 (Normal range 7-18)

ACTH <5 (Normal 10-60)

30 min: cortisol 10 (Range should be 14-25)

ACTH <5

60 min: cortisol 13 (Range should be 15-30)

ACTH <5

The Endo said my pituitary doesn't work at all. Am getting an MRI of it in another week. The endo doesn't tell me anything, not what to expect, not why the meds are prescribed in that manner. If I would not have been researching, I wouldn't even have known that this is a life-threatening disease. It is through you all that I knew to ask, do I need a medic alert, do I need to carry an injectible for emergencies.

I am going to ask for a second opinion with someone else. I have been taking my HC more in line with the circadian rhythms, I think. Instead of 10mg or 20mg 3 times a day. I have been taking 20mg in the a.m., 10 or 15mg at noon, and 10 at 4pm. I feel sick before I take each dose, weak, dizzy, tired. Is this normal?

Hope this explains my test better. The endo said I had secondary adrenal insufficiency because my pituitary doesn't work. If there is still some confusion please explain further. Thanks & hugs back at you.


04/24/2012 04:33 PM
Footprints11
Footprints11Posts: 391
Member

Well.......it sounds like your doctor either didn't explain what he was doing to you, or maybe he didn't understand it himself (which I'm kinda leaning towards, since he measured your ACTH levels during the stimulation) and told you wrong, or both. Check out the wiki page on the test and it will hopefully make a lot more sense: http://en.wikipedia.org/wiki/ACTH_stimulation_test

Think of your stress system as a cascade: your brain interprets information and tells the hypothalamus ("top level" in this) to Sound The Alarm! It makes CRH, which in turn tells the pituitary (second level) to make ACTH. Cosyntropin is a synthetic ACTH; you basically get injected with the pituitary's hormone in this test, so you're not determining pituitary function. The ACTH makes its way to the adrenal glands, where it prods the cells there to make cortisol. So "Primary" AI is at the adrenal glands; Secondary AI is a dysfunction at the pituitary. Tertiary AI (supposedly very, very rare) is at the level of the hypothalamus.

Ok. So when you got the test, the first thing the doc wanted to know was your baseline ACTH and cortisol. After that, you are only manipulating cortisol levels (by stimulating your adrenal glands with synthetic ACTH-taking your *actual* pituitary out of this equation-to make cortisol). Therefore, your doc would normally only be interested in what your new levels of cortisol (and my doc also measured aldosterone) after stimulation. The fact that your doc measured ACTH two more times......*never* heard of that. Anyone else? (side note: you will learn that there are MANY doctors, including endocrinologiests, who don't remember this HPA stuff). Does this make sense?

Looking at your results, I would agree that they look like SAI. Your baseline ACTH is very, very low (if it was very, very high and your cortisol was low, that would suggest the adrenal glands were broken; that's a key way of differentiating between primary and secondary AI). Your baseline cortisol is very low (which it often is because we don't have circulating ACTH to keep it up); the fact that your cortisol was able to triple suggests that your adrenal glands are still "capable of functioning". Ie, when given ACTH, it responded. HOWEVER, and this is my personal opinion <standing on soapbox-and cover your ears a bit because my voice projects...> it may be increased, but that doesn't mean a borderline/low level enough to help you cope during a stressor!!!!!!!!! <steps off, back to normal voice> Or-duh-that your body will make enough ACTH during the stressor to stimulate that in actuality. So what that means for many of us SAI people here, from the sound of it, is that when we encounter stressors, we have trouble coping regardless of this "doubling" or "tripling" ability in a lab.

Does this make better sense?


04/29/2012 06:34 AM
ITeach91
ITeach91  
Posts: 1872
VIP Member

Hi GrammaB,

I apparently was born with a pituitary cyst that caused empty sella. Though I had minimal endocrine type reactions during my life, it really did not impair my function until I had a Sheehan's type crisis during the birth of my third child in 1985. It took until 2009 to get diagnosed! During all those years, the pituitary levels dropped slowly but progressively causing more and more symptoms. The bad news is, the Sheehan's damage is permanent but the good news is, you can live a completely normal life with hormone replacement. I know the diagnosis is a shock but truly you will be thanking the day you found out because it will give you a quality of life you probably have not had for years.

Welcome to our forum, post as often as you need to!

Deb


06/04/2012 06:21 AM
GrammaB
 
Posts: 9
New Member

Thanks, again for all the encouraging, helpful comments. Has been a while since I posted, but am not doing much better and do not know much new.

Deb, I am sorry to appear so negative, but I have found very little good news and continue to feel sicker. good news (???) I get to take HC for the rest of my life, never knowing if I am taking enough for what my body needs, or too much causing osteoporosis and cataracts. I just read an article on bone mineral density at the congenital adrenal hyperplasia clinic site that the older you are (60-80), the greater the effect of hc therapy on making you osteoporotic. Loss of bone min density is 10% first year, thereafter 3% per year. Most fractures occur within the first 3 months of starting treatment. This really bummed me.

Other good news, guinea pig time with what meds I need. Have been diagnosed with Secondary Adrenal deficiency due to the Sheehan's, but PCP put me on fludrocortisone to see if it helps. No renin tests or aldesterone (SP?) tests to see if really needed. Well it helped me have high blood pressure and swollen feet, so now am on bumide diarhetic for the swelling...and make sure you watch potassium levels. I can't stand myself, cant take heat, emotional stress, just cry or sleep then wake up hurting and nauseous. I'm either scared to death of a crisis, or too down and tired to keep trying to get the help I need. sometimes on the bad days it seems that my best option is to quit all the medicine and be done with it.

Still trying to see a new Endo. PCP wants to make sure she recommends a better one this time. Anyone know of Endos who specialize in Sheehans, SAI, in someone 60 years old? In other words, not trying to get pregnant, dont care if I lactate, dont have diabetes (yet, knock on wood), but do want to have full thyroid, stimulation growth hormone, tests, and whatever it is you all find out you need to feel better.

Other good news, I get to live because of the HC. If I felt better, I guess I'd be more thankful. LOL!!!

what to do?


06/04/2012 11:43 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Belinda

I think it safe to say that you eventually build your knowledge up about dosing size and timing. You can certainly use 3-6 month blood testing to make sure you are roughly in the ball park, then refine that with day to day symptoms. There is of course some interaction with other parts of the endocrine system, but these are generally slow moving and don't have as critical an effect.

My BMD is rock solid, my last HbA1c was 6.2 and my fasting glucose good enough. It just takes time to tune the many things that are flying about. Self education and logical process seems to be the key to that.

Maybe look at a biphosphonate drug for bone loss? From memory that's also a common malady simply from getting older.

Well you can make some judgments on fludrocortisone simply on BP, BG and postural hypotension. I don't think aldosterone testing is accurate enough to help quantify the problem, only to say whether it is there and a possible root cause. If however you are taking a diuretic to offset the fludro then that is kind of wrong!

My initial gut feel was that you aren't taking enough HC, but given the dose size kind of being highish (Don't know your height and weight to check that), you could also have some androgen suppression going on. best to check DHEA, testosterone and estradiol. Low numbers there can manifest as fatigue. In other words the pituitary damage is affecting other parts of your body system and thus manifest as adverse symptoms. I assume you have already had thyroid and GH checked?

Are you on (female system) HRT?

It may be a multidimensional hypopit problem. Something to push the next endo into checking.

Oh and I can't see anywhere in your posts that tells us where you are. Kind of need that to recommend and endo.

Not sure I can add much more. Laura and Debs have just about covered it. I as well as they are happy to field any questions though.

Bob


06/05/2012 07:15 AM
GrammaB
 
Posts: 9
New Member

Thank you, Bob, for the quick response. I am 5'9, 250 pounds, 60 years old. I live near Hays, Kansas, USA. Have gained 70 pounds in past 18 months, all abdominal. Did have at least 6 mos of nausea, very poor appetite, 20 pound loss before SAI diagnosis. I have been reading everything possible, old posts here, your info on your web page, my own research, etc. So very much appreciate that you folks have shared sooo much info and experience.

My BMD is rock solid, my last HbA1c was 6.2 and my fasting glucose good enough. It just takes time to tune the many things that are flying about. Self education and logical process seems to be the key to that. I do not understand HbA1c?

They checked TSH in January & finally checked T4 this month. IGF1 checked last month. Results follow:

TSH 9/02/2011 1.96; 1/18/2012 1.80; 5/14/2012 1.58

T4 5/14/2012 1.13

IGF-1 4/11/2012 142;

LH 27; FSH 62 (both reportedly normal for postmenopausal)

Vit D 25- 1/18/2012 22 LoW

Although TSH in "normal" range, have found research saying circulating

TSH levels aren't necessarily biologically effective for Sheehan's (thus SAI) patients. Moreover, I believe that the IGH-1 "acceptable" level does not illustrate my need for further testing regarding growth hormone stimulation for same reason previously stated, fat distribution, QOL issues, apathy, withdrawal, etc.

I believe I have had SAI for at least 3 years if not more. Had to retire in 2006 (age54) due to extreme exhaustion, chronic pain, FM, brain fog, you name it, even had SLE diagnosis for awhile. I have been very lucky to avoid a crisis, although my cortisol level was 0.5 4/6/2012. I have had pneumonia at least 3-4 times per year, getting steroids injections, inhalers, and breathing treatments every time. Had a frozen shoulder...got steroid injections. Spinal stenosis and bulging discs...steroid injections just in January 2012. I think the pit damage from pregnancy related blood loss crisis in 1979 was exacerbated by the steroid use to bring about the SAI. Have also been reading about autoimmune damage to the pit from cell death during Sheehan's episode, which sometimes results in diagnosis years later rather than the acute episode some mothers get.

I am afraid...too much HC, not enough, what to do. Had to ask the one Endo I saw for stress dose info, medic alert, injection prescription. Her job was over with the diagnosis. I learned how to take my doses from you. Was on 30 mg, went to 60 mg for absessed tooth that took 3 wks to get resolved. Weaned back down, got weak & sick. At 45mg, I would wake at 2-3 am with bone/joint pain and nausea. Still not back to the 30mg. I am either in tears or extremely agitated. cant stand myself, but don't know if I have the energy to keep trying to learn & get the care I need. I, too don't have energy or time for the social stuff...just need & wanted some knowledgable help.

Have gone from a very active person all my life to a recluse. Until 6 years ago, worked daily on my 15 acres (am a Master Gardener), traveled extensively with my job (Washington DC, Chicago, Miami, LA, NYC,Dallas), hosted family gatherings for seven kids & spouses, 15 grandkids, rode my horses, took long rode trips on my Harley (have ridden since 1969). Have accomplished a lot in my life and need to focus on being grateful, instead of being fearful, angry, and exhausted. Just easier said than done.

Sorry for the length of this. Guess I got carried away...too "windy", but then I am from Kansas where the wind always blows! LOL

Thanks again to all,

Belinda


06/05/2012 07:19 AM
GrammaB
 
Posts: 9
New Member

Bob, one more question. You referenced 3-6 months on blood testing to see if I'm in the ball park. What other kind of blood testing do I need, and how often?

Thanks again,

Belinda


06/05/2012 11:48 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Belinda

HbA1c is commonly called glycated heamoglobin. It's is an average measure of blood sugar for the prior 3-6 months. Its more used for diabetics to check that their insulin injection regime is working well on average. Some endo's embrace its use for AI and some reject it! My PCP/GP loves it, but my endo doesn't. BG in an AI person does vary pretty widely, so an average would seem to be useful.

Yes TSH can be a worry for a pituitary fault. That's why you look at T4 and T3 with it.

You might like to start checking body temp. That gives you some idea about metabolic rate and thus thyroid and adrenal system state. If you decide to do this its important to follow a particular regime, so if you do and want info pls ask.

Testing generally? Well the choices depend on the original failure of course. Generally speaking you get a metabolic panel of at least TSH, T4 and BG. T3 and RT3 might also be worth a look. Electrolytes like K, Na and Ca are helpful as is VitD. If the root cause was a pituitary growth then ACTH, GH, Prolactyn, LH, FSH etc would also be worth checking for change. If you started playing with longer acting steroid replacement then DHEA, Aldosterone and sex hormones would follow.

So its not easy to give a straight answer on what to test! Keep a mind too that in range tests don't always mean good QOL. It seems that the last 20% or so you tune based on symptoms.

5'9" 250lb (110kg) from my data/paper needs 25mg/day if BMI was mid range. Yours at 37 is well into high body stress level so an additional 50-75% may be in order. To me this means you should take at least 37mg/day. There is IMO far more to it though. That you are gaining weight may be dose pattern/curve dependent or that your thyroid/androgens needs some help too. Even though the blame is often placed right on HC/steroid use it may not be the root cause.

Its possible too that your 10mg 3xtimes a day is the culprit and all other things being equal shifting it to (say) 20/7.5/2.5 will result in less weight gain. ie weight the dosage to the mornings. I don't however think your base dose is high enough and gut feel wise something else is going on. (eg androgens)

As a reference to how variable it can be I am 6'4" 300lb BMI 30 and take 60mg of HC equivalence. I am also using testosterone and that made a huge difference to my energy. I am also finding it easier to lose weight (except when tempted with anything chocolate, chicken, beef or pastry!) Be careful comparing me to you though as the disease and treatment varies very widely between people. I am also male and quite active (I walk/ride everywhere - no car).

Your low VitD can be a cortisol low indicator. Mine was about 20 so I started taking about 3000iu/day. At the time I was on full HC replacement.

I use to live in East Texas for 5 years BTW. Closest I got to KS was OKC!

Hope I am answering well enough. If not please remind me what is being missed.

Bob

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