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Brain/Pituitary Tumors Community
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Avatar universal

Question!

I have been here looking at different posts and I recently posted my own on the thyroid site and ran into someone talking about pituitary tumors.  I have been sick for the last 1 1/2 years, to the point, I am on medical leave from work.  I won't go into the long story but I got extremely ill and basically crashed.  Eventually I was diagnosed with HPA axis deviation.  My adrenal glands were almost flat and my thyroid was low.  My tsh was within range but my free t4 was low.  I am now on Armour thyroid and hydrocortisone tabs for my adrenals.  My thyroid is still not regulated.  I have had many symptoms and have no idea what's what but after reading a few posts I thought maybe I should put them here to see if anyone might have a suggestion.  Prior to getting sick, I was one of those women who seemed to frequently urinate, day and night.  That stopped and I only urinated and still only urinate about 3 times a day now which is crazy for me.  I do have some swelling in my face and my abdomen.  The craziest symptoms seemed to be in my personality, although I hate to admit or talk about them too much, as I'm scared I will not be taken seriously but I used to be the type of person who was always on time to work, never missed a day, always did extra and was very particular about everything I did but when I started getting sick, I found that almost overnight, I just didn't seem to care anymore, although I still forced myself, I would find that I missed meetings that I never did before and even called in sick when I wasn't really sick, just not feeling 100%.  I also have always been the type of person who has always been nice and polite to everyone, never getting angry or mad or upset or saying anything mean to anyone but I all of the sudden became like a mad woman.  I was agitated and easily upset by everything.  I have had severe bouts of depression, rage, laughter, you name it!  At first, I felt like I was truly going crazy.  The moods are better, as far as frequency but they are still bad.  My hair has been falling out steadily since January 2015, I am starving all the time and eat like a pig and have gained a lot of weight and a lot of fat!  I don't know if any of this could be pituitary but it's a thought.  I did go to an endocrinologist and he wanted to test me but said I had to stop all my medications for at least a month to be tested and I just could do it and go back to where I was before I started them.  I was extremely ill and don't want to go back there again.  The other symptom I have and to me, it's the worst one is, I have an extremely hard time waking up and getting up in the morning before 10 am.  If I do, I feel extremely ill and I don't know why.  I hate this as much as anything and cannot figure out what it is.  My doctor doesn't even seem to hear me when I tell him about it.  I would appreciate any feedback, ideas or suggestions!  Thank you
11 Responses
Avatar universal
COMMUNITY LEADER
What tests were done of the pituitary?

If your cortisol is flat... You would normally be losing weight. Maybe your replacement regimen is too much or the wrong times. You also need salt most times. So did you have a stim test? Do you have sodium and potassium tests? How were you diagnosed?

You sound a bit more like hypopituitary...low growth hormone and other things may be low too.

I would see a neuro endo. Btw HC is short acting. You can test by skipping the afternoon and testing the next morning off meds then take your morning dose.  Always test 8am fasting off meds.  Skipping one dose is usually not a problem. I don't have adrenal glands and that is what I do.


Avatar universal
Thank you for commenting.  This has been such a horrific ordeal for me and especially not really knowing what happened or what is happening with no true diagnosis.  I was diagnosed with ASI (Adrenal Stress Index -  saliva test.  
The first test was done 1/2014 and showed
am cortisol          8 - depressed     (13-24)
11am-1pm          18 - elevated       (5-10)
5pm - 5pm          4 -  normal          (3-8)
10pm - midnight  2 normal             (1-4)
Cortisol load       32                        (22-46)
  
DHEA 3 borderline (3-10)

These tests revealed "Maladapted Phase 1" on the cortisol-DHEA correlation spectrum
All hormones within range on this test except Estriol, which was elevated at 55
Total salivary SIgA  13 depressed      Normal 25-60  Borderline 20-25

Potassium 4.2          (3.5-5.3)
Sodium     142          (135-143)
TSH          1.65         (0.34-5.00)
t4 Free      0.84L       (0.90-2.30)
t3 Free      2.6           (2.1-4.4)

On 6/12/2014, I was retested for free cortisol saliva
6-8 am                  7 depressed              (13-24)
11am - 1pm          2 depressed              (5-10)
4pm - 5pm            2 depressed              (3-8)
10pm - midnight   2  normal                   (1-4)
Cortisol load        13                               (22-46)
DHEA                    3 Borderline              (3-10)

Cortisol-DHEA correlation spectrum reveals "Adrenal Fatigue"
This time hormones went out of range
Estrone   - 14  depressed               (26-64)
Estradiol  - 72 elevated                   (1-4)
Estriol -      >150 elevated               (7-18)
Progesterone  1185                        (100-300)
ISN
Fasting       <3   normal 3-12
Non-fasting <3  optimal 5-20)   Depressed

I went to an endocrinologist and was tested for several different things but the ones out of range are
Thyroid Peroxidase AB   1            <9
Thyroglobulin AB            4            <4
Sedimentation rate        33 H        0-20
IGF-1                            199 H      48-187

This really is so confusing, as I still get these weird episodes of inability to focus or concentrate and just feel almost dizzy like and overall a feeling of being ill.  My thyroid was within range 6mths ago but is not low again and my hair is still steadily falling out.  I have new onset of sleep apnea with central episodes which sort of bothered me when I saw the test results.  I have been seeing an integrative medicine doctor and he just never seems to worry about anything.  He always says, just give it time.  The endocrinologist saw that I was on Armour and I think he assumed I was seeing a quack and when he saw saliva testing, he really got an attitude.  I finally convinced him just how sick I've been so he at least ran these last tests but wanted me to stop the hydrocortisone and Armour for a few weeks and then come back.  I tried but I got soooo sick and just never went back to him.  These last labs and the others I had done at the same time have never even be reviewed, as I didn't go back to him and no one even called me!  Would it be impossible to test for pituitary problems while still taking these meds?  That's what he insinuated..  It's been 1 1/2 years and I am still not able to work.  I am a hospice nurse, which requires lots of work, lots of stress, lots of knowledge, lots of responsibility and major multi-tasking but I loved it and want so bad to go back and get my life back.  I am probably 70% better than I was when I initially crashed but that last 30% is huge for me to be able to feel comfortable enough to work without feeling I might crash again.

Please let me know what you think and if you need any other tests.  I have plenty!!
Avatar universal
COMMUNITY LEADER
The endo is not going to like the other alternative doc... and for some reason it seems they freak out at T3... even though it is what the body uses instead of T4 that the body has to convert.

My only concern with armour is that it has a very high T3 ratio and can easily render a person hyperthyroid... so adding a bit of T4 can help offset that.

The thing that really concerns me is the IGF-1 really... the doc is nuts to let that go! You should be getting a stim test and more testing on that baby. You could have the early stages of acromegaly and not being showing physical signs, but still have it.

Avatar universal
You are right about the alternative medicine doctor.  I could tell when the endo saw I was on Armour, he didn't like it and actually wanted to blow me off until my husband spoke up and told him just how sick I've been and that I used to actually be able to think straight and was a function RN.  

The endo actually moved out of state and now I am waiting for another appointment with a new doctor, whom I will see next month.  No one has even seen those labs.

I just posted another question on the pituitary site.   I listed all my symptoms and would greatly appreciate your thoughts.  You have already helped me more than you  know.  I think just the fact that you seem to take it serious, means a great deal to me, plus your knowledge is amazing!  I know I have been extremely ill and I think I have not been taken as seriously as I should have but you have re-motivated me!  I do appreciate it.
Avatar universal
COMMUNITY LEADER
There are some MDs that prescribe armour - it is a good med it just needs to be right for the patient (and usually balanced with T4 IMHO). I take cytomel and T4 and it was a battle to get the T3. I had horrid acne all over my arms and oddly, when I started the T3 as a trial, it cleared up. Then the doc refused to refill (the hatred of T3 extends to all brands) I had to stop for a while until I found a new doc and my arms got bad again! It was wild that my skin was effected. My point is that everyone reacts differently to hormones.

I have been thru the wringer - I sympathize and empathize with others.
Avatar universal
Thank you again.  I do appreciate input as this is all pretty new to me. Now I know what you mean by T3 issues with doctors.  That is weird.

Is it normal to have a normal TSH and T3 and a low T4?  Initially, this is where I was but after being on Armour, my TSH, T3 and T4 are now low.  I know that is probably normal after being placed on medication but were the initial numbers common?  I was sort of surprised initially, as typically the TSH would be higher but it wasn't.  

Are you doing better now?

I did get an appointment with an endocrinologist next week and will let you know the outcome.  
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