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Hypocortisolism ForumsGeneral & SupportIs it possible to have SAI and PAI?
06/01/2011 06:36 PM
Rhub
Rhub
 
Posts: 161
Member

I went to a new Dr. yesterday, because he has treated someone else with Addison's and she feels a lot better after seeing him for 3 months. After meeting her, I decided to give him a try. He ran a lot of tests, and yesterday he went over the results with me.

He said I was anemic, and gave me a Rx for an Iron supplement.

He said I was predibetic and discussed my diet with me, then told me it was pretty healthy and I don't have any weight to lose, but my lack of exercise could be causing my level to be high. I told him that was why I was seeing him, I wanted to feel good enough to exercise again.

He said my Testostrome is low, and I should use the cream I already have. I told him, my endo just started me on DHEA as that was also very low (last time my endo tested it) and that may tell my body to produce more testo. If not, I will start using the cream again.

He said that (which I don't really understand) my reproductive test indicate that my reproductive system should not be working, but it is. I am still ovulating, according to his tests. But the hormone levels are at a point that, that should not be happening.

All of my thyroid test indicate the thyroid is working fine.

tsh 1.89

T3 Free 2.52

T4 Free 1.25

But my Triiodothyronine, reverse is high at 378. That means that the thyroid is working and then this is blocking it so my body thinks my thyroid is not working. He said this is why I have so many thyroid symptoms.

Does that make any sense to anyone?

However the most confusing thing he told me was that he thinks I have a pituitary tumor. This is based on a prolactin level of 191.8 when the normal range is 3.34-26.72. He said a tumor is the only thing that could cause a number that high. This is also what is causing my headaches, and blurred vision. As well as the multiple cysts I have in my breasts and on my ovaries. I told him I had a brain MRI a year ago to look for a P.tumor and they didn't see anything, but were planning on rechecking this summer. He said it may have been too small last year.

This confuses me because I have primary AI and if I have a tumor, that would mean I have secondary AI too. Is that even possible?

In the end he refered me back to my endo. He said my case was too complex for him. All of my tests seem to contradict themselves, and at one point he told me I was a "medical anomaly." That really made me feel special. So I left his office with a copy of the labs to give to my endo next week when I see him, with the suggestions that I get another Brain MRI as soon as possible, and that I go over all these labs with my endo. He also gave me an Rx for iron, and ordered an ultrasound on my ovaries with a copy sent to my endo and PC.

Rebecca
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06/01/2011 10:30 PM  Top
bob3bob3
bob3bob3Posts: 4152
Senior Member

Hi Rebecca

I get that anomaly stuff too. Whats good is that the doc is being honest!

But to answer your burning question, yes you can have both SAI and PAI. Theoretically SAI can cause PAI from lack of adrenal gland use. I know of two people in this group that have both.

Sorry I cant get my head around your thyroid stuff just yet. I am fogged just a bit!

Bob

Please remember that accurate answers often need detailed source information. Please considering putting your DX status, drug dosage and other information into your "About Me" or Signature Line. That also includes what country you are in because measurement systems and diagnostic methods vary around the world.

06/01/2011 11:14 PM  Top
Rhub
Rhub
 
Posts: 161
Member

Thanks Bob.

He was being honest, but it would have been better if he had just ordered the MRI, I don't understand why I have to go through my endo. I tried calling my endo today to see if he would order one now, as a recheck from last year, before I see him next week, but they said I needed to see him first. Hopefully he will order one. Even though they are the worst test. I'm totally clostrafobic, and they put this cage around my head. It completely freaked me out.

Rebecca

06/02/2011 11:59 AM  Top
Waytoohandsome
Posts: 474
Member

Rebecca, from what little I know, it sounds like he's right.

The most common pituitary tumor is a prolactinoma, a tumor that secretes too much prolactin. Numbers as high as your prolactin count don't usually just happen, they likely come from a tumor.

In the past, they used to operate to remove them, but now if it's not pressing on any vital nerve, they more commonly used pharma approach. Since prolactin and dopamine compete with each other, they raise your dopamine by giving you a dopamine agonist drug.

They usually work and oddly enough, they shrink the tumor.

And prolactinomas don't always show on an MRI.

"Worst of all, young man, you've got INDUSTRIAL DISEASE!!" - Dr. Knopfler

06/02/2011 10:02 PM  Top
Rhub
Rhub
 
Posts: 161
Member

Do you know why a MRI can't see them?

Brain MRI's are so stressful for me, if they are not going to be able to see it, I'm not sure it is worth it. I am so claustrophobic! I'm stressed just thinking about it.

Rebecca

Rebecca

06/06/2011 10:55 PM  Top
EnglishRose119
Posts: 170
Member

I have a pit tumor and it was on all my MRI's even the weak one. Did they retest your prolactin? I've had 1 high one and the rest normal

06/07/2011 08:04 PM  Top
Rhub
Rhub
 
Posts: 161
Member

The endo ordered the MRI, now it just has to be scheduled. This was the second prolactin test, the other one was about a year ago and it was just a little high. This one was 6.5 times higher than the normal range. He also started me on the thyroid medication Synthroid. Hopefully that will make me feel better soon.
Rebecca

06/08/2011 08:36 AM  Top
AKmama
AKmamaPosts: 210
Member

So glad to hear he started you on thyroid meds. That will make a huge difference!
Live in Alaska, USA - Secondary Adrenal Insufficiency (Empty Sella) / Hypothyroid
7.5 mg hydrocortisone (5mg waking/ 2.5mg afternoon)
3 mg Medrol (Methylpredisolone) (2mg waking/ 1 mg afternoon)
15mg DHEA (a.m.)
120 mg Armour (in a.m. on empty stomach 1/2 hour before all other meds)
.5 Florinef (a.m.)AS NEEDED ONLY, 800 mg magnesium (helps me regulate digestion), 50,000 IU Vit D 2 x/s per week

Previous discussions I participated in:
aldeterone levels?
SAI
Endo's exercise plan

06/08/2011 09:34 PM  Top
Rhub
Rhub
 
Posts: 161
Member

The MRI is scheduled for next Wednesday. I took the synthroid this morning and although the endo said it would take a few days before I could tell the affects, I felt better today than I have in months.

The only problem is I noticed a slight reaction to something this morning and I think that was the only new thing. I'm going to try again tomorrow, and check for signs of allergic reaction. As good as I felt I really don't want to call him and say I'm allergic to the medication that made me feel better. I'm worried he take it away.

Rebecca

06/08/2011 09:58 PM  Top
bob3bob3
bob3bob3Posts: 4152
Senior Member

I have a strange reaction to T4 sometimes. Kind of like a sudden energy drain maybe 2 minutes after I take it that lasts maybe 5 minutes.

Don't know how common it is..

Please remember that accurate answers often need detailed source information. Please considering putting your DX status, drug dosage and other information into your "About Me" or Signature Line. That also includes what country you are in because measurement systems and diagnostic methods vary around the world.
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