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1448748 tn?1312956208

hypo pituitary? Addisons? or what?

I have been experiencing extreme fatigue and nausea to the point that I cannot eat and have lost 15.lbs in 2 Weeks. I waited about a month before testing after taking prednisone for inflammation and it took away all of symptoms and the result.was

1.9 serum(4-22) am serum Cortisol

I also got an interesting result in my progesterone of less .1
Lh 5.7 iu/l Fh 5.9 all low

my doc said come back in a month to re test even though these are the only tests we have done!!
regarding hormones.

I can't wait a month, I'm going to turn myself in to the hospital I'm so miserable, does this sound like Addisons or what do the results point to? Addisons? Hypo pituitary?

They did do a cmp.and I do have a tan, all of my newer scars are brown instead of white,

Sodium 142 (135-144) potassium 4.2 (3.5-5.3) Bun/creatine 27.1 (6-22) Mean plasma glucose 108 H (65-100) Hemoglobin a1c 5.2% H

I included the last three cause they were abnormal...don't know what they mean cause doc said my labs were normal until I picked up a copy of them and asked about the low progesterone and Cortisol and he said it was because of the prednisone I had taken the month prior And we would r test in a month!

my Dr is an idiot and I want a new One, but I have limitations with my insurance, I had to beg him to take these tests in the first place and knew he was taking the wrong tests...but figured hey at least I'm getting a Cortisol level.and some other hormones because he refused before, but I explained my theory and he did finally. so before that test I hasn't eaten in a few days I don't know if that effects anything...and it seems

Progesterone, lh, and fsh are low, while estrogen and testosterone are normal or high normal.



23 Responses
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596605 tn?1369946627
Jennifer86-
Thank you so much for backing up and taking the time to write down your story. I have been a bit out of the loop due to my own health issues and this made it much easier for me to to comment. I've even heard that many Chiarians do in fact have empty sella and/or other Pituitary diagnoses. So you are not alone there, I believe.

The fact that your TSH is nil combined with such a low prolactin, ACTH and cortisol lead me to think that you are on the right track with your theory of being hypopit. And yes, that accident could be the cause.

I also feel nausea and extreme fatigue when my cortisol levels are too low. When I am in crisis add confusion and vomiting! Good fund isn't it :)

For the right now,  I strongly believe that you are in a "near to" if not a full on adrenal crisis right now.  Are you able to take your blood pressure? I'll bet ya that it is really low when you get so tired at 1 pm.

I don't see any reason why taking prednisone would be a problem. Many pituitary patients take (3-5 mg/day) as their steroid because it suits them better. Some pitpats even take low dose dexamethasone which is even longer acting with a whopping 72 hour half life . I don't know enough about Chiari and the expected recovery time for your recent surgery, but maybe you do need a little extra oomph right now ion addition to your base needs.

With hormone replacement the key to to replace what your body is not making and not over replace. Over the long term you want to be careful of taking extra steroids... than you need, as it could put you into a Cushing's disease type situation which weaken your bones and skin, and compromise the immune system. It can also affect your adrenal glands too.

This is my advice:
#1.I think what is important is to get through this "crisis" first. Ask for prednisone, if this is what works better for you and get your energy and appetite back.

#2- Look for another endo. A Neuro endo. Look at larger hospital centers that maybe have a pituitary program. Self refer if you must. Talk to your insurance company and get a list if you must. Make this your next cause as you heal. Your care is only going to be as good as this next doctor is. Unfortunately there are SOOOO many sucky ones out there that it makes me scream.

#3.Work closely with the new doc to get the dose tapered to a physiologic replacement dose once you are feeling better and are ready..

#4. Get your pituitary assessed- labs, labs and more labs

#5, As you know more about what is going on, you might find that you are put onto hormone replacements that will help you to feel better ( takes a few years to get it all "perfect"

Horselip
Helpful - 0
1448748 tn?1312956208
I was never on prednisone for any crisis or any pituitary issues or adrenal issues before, I had brain surgery on my chiari malformation an only took a very small dose of prednisone .4 mg 3 x per day for the first time in my life for a week.  I don't think prednisone had anything to do with this, my doctor just thought my first result might be falsely low due to the prednisone I had taken for a week for my inflammation due to my brain surgery.

I have had symptoms of pituitary dysfunction for over a year and a half after I had a seizure and a severe concussion and contusion which I was monitored overnight in the hospital for. I started on a small dose of thyroid medication because I had some weird thyroid results, my tsh was low and so was my free t4 although all my symptoms were hypo thyroid so I went on a trial dose of levothryoxine to see if it would help and it helped a little so I am on 50 mcg of levothyroxine.  I am also on 60mg of mscontin for pain, topamax for migraines and percocet for breakthrough which I really try to stay away from.  I asked based upon my strange relationship of my thyroid results and lots of research for my primary care to do more hormonal tests when I was really sick and nauseated and lost 30 lbs all the sudden when I was used to gaining weight and not able to lose, and he refused.. then we found the chiari, and I gave up the pituitary idea and had surgery for that because we thought the extreme weightloss and nausea was probably caused by brainstem compression.

So I had the surgery and was re-admitted due to high pressure and thats the first time they put me on prednisone to take down the swelling and inflammation but I was only on a small taper dose for a week in september. as soon as I tapered off I felt like I did before surgery, but while I was on it, for the first time in a year and a half I felt normal. so I thought it was brain surgery gone wrong, but mri's and surgery looks beautiful, and I start losing 15 lbs in 2 weeks after stopping pred. again so I ask for hormone testing and it had been a month after taking pred. and my am result read 1.9 serum not saliva.... and he blamed it on the prednisone I had taken a month prior and told me to come back in a month even though I was losing weight that rapidly.  I was seeing a rhemy for my back and hips and she saw my results and called my endocrinologist that I hadnt been able to see yet because my apt. was still a month away, and she was able to move my apt. up due to my severe weightloss and symptoms and thought that  my lab results were significant... so I got new labs, almost 2 months out from my last dose of prednisone and my am serum cortisol was 2.1, he also did acth was > .5 , acth stim test, but we are still waiting results on that, a prolactin which was .5, and an estradiol which was 62, progesterone which was  again >.1 but did not do the other pituitary hormones and didnt address my low hormones besides my low cortisol.

He prescribed me 20 mg hydrocortisone to take both in the morning.  I have been taking them for the past 3 days, and I crash so hard at 3 no matter what I do.  I tried taking 10 mg. in the early morning, I wake up at 530am and then 10 mg at 12... I have tried 5-5-5, I have tried all 20... they all end up the same, me being really tired at about 1 and then me not being able to keep my eyes open past 3 literally.  Is there a reason to take hydro over pred? I feel like the pred did so much more for me??
Helpful - 0
596605 tn?1369946627
I just wanted to say hi and comment based on my own experience.

If your stores of cortisol are very low, which it sounds like it might be, it might take a little while to get your energy levels back up. So give it a few days, if you can.

Otherwise I would go into an urgent care facility and get a shot of Dexamethasone, used for an adrenal crisis. It sounds like you are pretty much on the verge of having an adrenal crisis?

In terms of replacement whether it's adrenal of pituitary it won't really matter as they would give you the same base medication- good ole hydrocortisone.

Whether this is coming from an adrenal or pituitary source... this can be ruled out by your lab work and neuro-endo once you find a better one.

Just to back up a bit as I am trying to understand...were you on pred before and went off of it for testing? And then this put you into this "crisis"? And if so why were you on the pred? Are you on thyroid meds? Or have you had any other testing endocrine-wise?

Feel better soon
Horselip



Once your cortisol is stabilized then yes, you should be getting all of the pituitary hormones tested. Especially since your hunch is leaning towards a pituitary source.
Helpful - 0
Avatar universal
The docs will pretty much say the effects are immediate. There is some thought and I think studies - I have to look because they are new - that cortisol is also stored in the tissues so it would take a while to build back up.

Energy is an iffy thing - that is something I never got back yet I know others who are AI who are athletes - so it can vary greatly! If you have nausea, odds are the level of replacement is low due to illness or another reason. That is a sign for me of trouble (as well as the confusion) that a crisis may loom unless I cut it off with more meds, salt, fluids etc.

If you go to a neuro-endo, you should be covered.
Helpful - 0
1448748 tn?1312956208
I was really confused as a major symptom when it is its worst...I don't think its adrenal though, I still think its pituitary...should I seek out pituitary, another endo, adrenal or some other specialist or does it matter? I'm still upset that they haven't tested my other pituitary hormones and are ignoring my progesterone and other low hormones.

Then on a side note, how long after starting hydrocortisone do you start to feel better and get some energy back? I started yesterday and I still couldn't say awake past 5pm and am still very nauseated..does this mean its not the low Cortisol causing my fatigue or does it just take a while to circulate in you're system?
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Avatar universal
I would hunt around for a doc that treats adrenals more carefully. You should not be replaced and not know what to do in an emergency.

I wear a medic alert bracelet. I have an *emergency* letter to give to ER docs that outlines treatment and gives contact information. I  have medication to take to prevent vomiting and extra corticosteroids to take when I am sick as well as a solu-cortef injection and needle in case I cannot keep down pills.

Your doctor fails to realize that your situation can become life-threatening and you need to have some extra care and some extra information. I say this not to scare you but to prepare you so that you have what you need on hand to stay healthy and prepare those around you to take care of you in case something happens (for instance, my symptom is confusion so I conveniently forget to take extra meds just when I need to so my hubby knows that and makes sure that I do take extra!).

Read up and educate yourself - and this doc too. There are a couple of reputable adrenal organizations to join and some have local meetings - you can try that as well for information.
Helpful - 0
1448748 tn?1312956208
No he did not give me anything like that, just said that we will give you some Cortisol to help your pituitary out and called in a script then I got it..haven't checked any other hormones that I have read about either nor addressed my super low progesterone that showed up both times.
Helpful - 0
Avatar universal
Your doctor should give you script instructions? You can take it all in the morning but most take 75% in the morning at 25% around 2-3pm. So that would be 15mg as soon as you wake or 7-8am, and 5mg 2-3pm.

I hope he gave you extra for illness - and instructions for stress dosing? As well as an emergency injection? There are some links in the health pages that can help you.
Helpful - 0
1448748 tn?1312956208
Yay! Got more testing done, but my endo is an idiot and only ordered acth stim test  and prolactin ... But Cortisol came back low still after 2 months of being off prednisone so my doc decided to finally put me in some hydro cortisone.... Hopefully it helps the fatigue and right lots and nausea.... What is the best way to take it? He have me no special instructions except to take two 10Mg tablets in the morning. I've read its best to take some in the morning and some in the afternoon?
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Avatar universal
I think eukalemia means normal potassium.

Pituitary issues most certainly happen after trauma -  you can search for both terms and find many medical papers on it. Pituitary problems can vary in symptoms and hit different hormones.
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1448748 tn?1312956208
So, I found this, and I definitely think I have a pituitary problem not addissons. Is eukalemia mean normal sodium and potassium? I also looked at some pictures of hyper pigmentation and I don't have that... But this says hypopituitarism can develop slowly over years and can be caused by traumatic brain injury which all lines up with when my symptoms first began after I had a seizure and fell and hit my head against the concrete right above my brow with a huge contusion and concussion about a year and a half ago

-----.

Symptoms are nearly identical to those of primary adrenal insufficiency but can be differentiated by lack of hyperpigmentation. Hyperpigmentation occurs in a long feedback loop in which a cortisol deficiency results in increased production of ACTH by the pituitary. The ACTH precursor coupled to melanocyte-stimulating hormone is not produced in patients with pituitary disease, and therefore, hyperpigmentation does not take place.

Patients with secondary adrenal insufficiency usually are eukalemic. This differs from primary adrenal insufficiency, in which patients develop hyponatremia and hyperkalemia. Aldosterone secretion is not affected, as it does not depend on corticotropin but instead on the renin-angiotensin axis.

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Avatar universal
Good! Keep us posted. I hope that you get some more labs done and some action to feel better.
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1448748 tn?1312956208
Yes, the endo got a copy of my land and moved my apt up to  Nov 8 . So at least that are doing that
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Avatar universal
Yes - the ratios have to be off. I forget what they are though and  your TSH has to be super low too - like mine is .0006 or the like. It varies.

Are you seeing a doctor any time soon?
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1448748 tn?1312956208
I've always held water and salt well, I have had problems with water retention in the past, and I am never thirsty, I have to force myself to drink fluids I'm obviously not in an adrenal crisis, but something is wrong when all my hormones are low and I feel like this and I've read that pituitary can be diagnosed with my thyroid labs only....
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Avatar universal
Others answer at times - but as CL, I try to cover and hope people do not feel neglected!

Not eating I would think would lower sodium and potassium. I actually take sodium tablets and my sodium stays barely in range! When I feel cruddy, I have to up up up the salt or I crash badly. If you take enough salt that may keep you in range but I find it hard. After all, a crisis is loss of sodium so sodium is critical to the body and to the whole diagnosis - as far as I know.

I think the far more common type is adrenal - being the auto-immune adrenal addison's but there are plenty of people out there with undiagnosed pituitary issues - only testing can tell source. Crisis is the same be it adrenal or pituitary source. Treatment is the same - but yeah - the florinef can be optional to hold salt!
Helpful - 0
1448748 tn?1312956208
Poor rumpled, yr the only one answering questions, must get exhausting. Thank you so much for taking the time though, I see you everywhere helping so many, it's greatly appreciated.

Just wondering since I haven't been able to eat if that's affecting  my potassium and sodium ie I crave salty but can't eat it when others with addissons would..?? And then, do those have to be abnormal for you to have a pituitary problem also, or just addissons?
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Avatar universal
Was the brain surgery near the pituitary sella? Then you should be able to self-refer! Yeah, the docs should figure the rapid weight loss is not a good thing but the addison hallmarks have abnormal sodium and potassium levels and yours are normal - so wonder what else could be up?

I would shop around your results to a pituitary center and see if one will take you.

Minakshi - I am not a doctor - there is no way I could tell you to change a dose of medication! If your doc wants you too - you can try and see if you can handle the side effects...
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Avatar universal
hi! i  had pitutary adenoma of 6mm.i am taking bromocipton 10 ml in a day.but my prolectine  is always high more than60.my doctor asked me to increase the dose but i am not satisfied  with him .i asked him for surgery but he is not the nuero ando.i am very worried because i hav e no baby till and multiple miscarrige.should i increse the dose of bromcriptin or not and how long???
Helpful - 0
1448748 tn?1312956208
Gp, it's just my weight  loss (15 lbs in 2 Weeks) and not being able to eat anything at all that concerns me about waiting a month.

What about my tsh and free t4 relationship along with the low Cortisol and <.1 progesterone and just having had major brain surgery, if that enough to get into a nuero endo?

And if not or is so how do I get there? Self referral? Really wait a month and lose another 20 lbs? I'm only 130 lbs right now if I keep losing like this fast, it will not be good, I can't just wait and nobody seems to recognize that.

I've been going through this a yeast and a half, and I've dealt with they pain and symptoms, but it's getting bad fast all the sudden and I just don't think waiting a month is a good idea with this weight loss and me not being able to eat or hardly drink  there has got to be another option like check myself into a hospital, will they do anything??.
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Avatar universal
Is your doc an endo or GP? It should be an endo... and it should be a neuro-endo but you have to get demonstrated tests to get in to the neuro-endo and I am not sure the low LH and FSH will get you in to a pituitary center.

Waiting for a new doc = standard sadly... it makes diagnosis times drag out!
Helpful - 0
1448748 tn?1312956208
I was on 4Mg 3 times a day of prednisone. What do you think about my progesterone being so very low?

I know on the acth thing I thought at least that's what he would do  my levels were low but he wants me to wait a month. Who can I get to test me? If I try to  get a new doc it's gonna be a while for my first appointment and I can't wait.
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Avatar universal
Your doc *should* run a cortisol and an ACTH together - they form the loop and then you/the doctor would have more information about what is wrong and where it is wrong - provided the testing is done correctly.

It is good that your sodium and potassium are normal - that really helps.

How much pred did you take? It does have a pretty long half life but if you have been off a whole month, testing should be valid now.  Pred can and does impact blood sugar and it can impact other hormones too - but you should be out of that window.

LH and FSH are pituitary hormones - hence your hypopit question - and that you should look into. The issue is that those hormones can vary by time of cycle and all - that it is hard to get attention with them.

Bun/creatine is high - or so I am told when mine is high due to fasting for the tests... even when I drink water before the tests - so I am a bit - eh - not happy with that one.

You have to find someone who is not an endiot...
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