Brain/Pituitary Tumors Community
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Avatar universal

How often should hormone tests be done?

I was diagnosed with a micro pit tumor in May 08. They did the following tests TSH FT4 Cortisol AM FSH LH Estrodial IGF-1 and prolactin all were normal except cortisol was slightly elevated so they did 24 hr urine which came back normal.  In Nov 08 they did another MRI which showed no growth so the only hormone they checked was the prolactin and that came back normal. I still leak. Now they told me I didn't need to come back for 1 year for another MRI. Should I go 18 months without checking all the hormones?
9 Responses
Avatar universal
No. I go quarterly.
Your doctor certainly does not understand cortisol IMHO - an elevated test requires more than one test. Also, I fully lactated with normal prolactin levels - oh I had a prolactinoma.
The normal 24 hour urine is something, but... if you are like me and tons of my friends, you can be cyclical, lab error (my last one came back 0, I would be dead), or a medication interference...
I had a Cushing's tumor too. My tests were all over the place. Why not some night time salivaries, 10 hour urines, or man, I get a lot more tests than you - DHEA sulfate, vitamin D, renin, aldosterone, Free T3, thyroid antibodies... you are missing a lot.
Perhaps you need to find another doctor who will take the leaking and your symptoms seriously ... a year!!! pfffft...
Avatar universal
Thanks for your respond.  This is what I thought but I wanted to confirm my thoughts with others with a little more experience.  They did say next time they would check the antibodies because of huge family auto immune problems.  My son has type 1 diabetes and Hashimoto, brother RA, grandma graves and the list goes on.

He did check my vit D which was below normal so i am taking vit D supplements now.  Why do they check the vit D and renin?

Have a wonderful Thanksgiving!
Thanks a ton
maybe I'm not wacko
Avatar universal
There are more tests, I just mentioned a few - my point is that the endocrine system is a system and it effects, well, your vitamins and minerals (did they test ferratin?) and lots of things are effected. Just to do a couple of tests does you no favors and once a  year or less is no good.

I know - I was in the same boat. I made the mistake of not getting copies of everything ( I was in college) and when I told my doc about the family history of hashimoto's, well, I had a nodule removed that showed I had it but no one bothered to tell me I had it so I did not find out I had it until I got all my records together 15 years later. All my docs told me was to stay out of the sun as my scar was bad and probably no one would marry me. Really.

Why wait until next time - do they not realize the damage hashimoto's can do? Your doctor is sounding not very intelligent. Get to someone else and really get a check up - your health does depend on it. You are not wacko - your doctor is!

The point of asking for all the other adrenal hormones is to see what else is messed up there - there are so many other things they can check! Is your BP high or low - that is renin!

I ended up with both Cushing's and a prolactinoma. I know others just like me even though it is rare. Get to a competent doctor, please.
Avatar universal
Sorry to barge, but how does low renin reflect on BP?  i.e. Low retin = low BP ?

I also had very low Vit. D levels.  I did 2000 iu for awhile, and it got my levels back up.  But then they were on the decline (still normal but on the low end) last summer when I was taking 1000iu, and spending everyday in the sun.  Apparently the sun does not help me.  Only taking high doses of vit d.  So now I'm back to 2000 iu.  Make sure you're taking the D3 form.  I was taking another form (1200iu) when my levels were really low.
Avatar universal
My blood pressure has been high over the last 4 years. They say its from the weight that i have gained. They did do a folate and ferritin and all normal.  I don't know what those are for.

its funny but i used to say these symptoms are like waves they come and go.  I also was a flight attendent and just retired (early) and my symptoms would be at the worst when i was flying a lot in Jan. Feb and march.  I wonder if it was the pressurization of the aircraft. Have you ever looked at a bag of chips or a water bottle on the airplane? Just think of what its doing to your insides.

I would love to talk to all of you more but I have a turkey to get in the oven so i'll touch base again soon

Thanks so much  to all of you
Avatar universal
Ah, I forgot to say that - I take D3 as well - and I take 2000 i.u. as well. I was taking 1000 and I kept going up and down and so I upped to 2k and um, dropped. Whatever. I have no idea where it all goes. I also drink boatloads of milk and all. i have no ovaries and so I need the calcium and D to keep up my bones. I have a parathyroid issue too (I needed another problem!) so I have to watch my calcium and take lots of it.

I have high renin and low blood pressure.

True, pressure can cause issues but... they are blaming the weight for things when they are not looking at the source of the weight. If you changed your diet and started to snack, eat high fat, well, then, you gained. But if you did not change anything and you ust gained anyway - your body changed and you did not and they need to listen to you and not blame you. It is very hard and the doctors just assume the doctor is lying. I did a food diary and all sorts of things and was called a liar to my face. My job was compliance and all set on truth and mistakes would cost millions, but to the doctors, I was just a liar and scum. It was difficult and my testing all over. I never healed which made then send me for AIDS tests (huh?) and all sorts of every tangent and put me on diet pills,, anti-depressants - all things that did not work. I was not depressed. I was mad that nothing worked and no one was not listening to me!  Once I found a doctor who really looked at the tests and at me, I was helped but it took a lot of time (too much for me unfortunately) and a lot of travel.

Hope you both had a nice Thanksgiving.
Avatar universal
Thank you I had a very busy thanksgiving.  My in-laws had to move to memory care and my cousin's daughter died of a rare brain tumor (DIPG). 7 yrs old so so sad sure makes me wonder about families and brain tumors.

I saw in another line you were both talking about estrogen and progesterone and i find it interesting that when i was diagnosed i had an IUD with progesterone.  The endo recommended that i have that removed because she thought that it might be interfering with the lab tests and she felt i was probably menopausal anyway.  I've also read that many pit tumor are discovered when women are pregnant and that they "the professionals" think it could be because of high levels of progesterone during pregnancies. I don't know if there is any truth to that.

I wish you both the best of luck I'm sorry i'm not much help yet. I'm just getting started with this whole thing but I do enjoy comparing notes and i have very strong shoulders to lean on and big ears to listen.

Take Care
Avatar universal
I'm so sorry about your cousin's daughter.  How devastating it must be for them & your family.  And how awful that it happened around the holidays.  Many prayers for your family.

I had mentioned the estrogen connection in a study that I had found.  I think progesterone actually helps because it's a matter of estrogen dominance.  I had read that during pregnancy, the pituitary becomes more vascular, increases in size, and it's actually the increase in estrogen that promotes growth.  For now, I'm taking milk thistle to rid excess estrogen. I was going to embark on a estrogen dominance crusade & do a progesterone shutdown (with progesterone cream), but I figure that wouldn't be wise given a total lack of knowledge of what receptors my tumor may have (ya just never know).  I'll wait till I do surgery and see what the pathology says.

My very first symptoms started when I hit puberty.  Ironically I was in a car accident 2 years prior at 12yo, in which I was thrown onto my head from the back seat to the front.  It wouldn't surprise me if that was the match that lit the fuse & the estrogenic state of hitting puberty was the gas.  I wasn't exactly ovulating normally for years, and progesterone was definately lacking in that case.

There's also the chinese medicine belief that tumors stem from stagnant "qi" or "chi".  Being more active (which increases chi), doing Qi Gong, and reducing "phlegm" (dairy, refined carbohydrates) keep the flow of toxins & dead tissue from building up & forming unwanted growths.  There are even chinese formulas geared at getting rid of tumors.

God knows I need to be more active lol.  It's hard when you're wiping yourself off the floor most of the day.
Avatar universal
Sorry to hear about your cousin's daughter... and your in-laws moving to care.

I had my dad and uncle die of brain tumors a few years ago and my MIL died last xmas of dementia... my FIL has a bit of dementia now and is undergoing testing and he is way more combative. Very stressful.

I always had issues with my female hormones. My cushing's totally flared up when then put me on depo provera after a surgery for endometriosis. I just wish the docs would think. Think think think. It got so that they just gave me so much off the cuff diagnosis stuff - I laugh (not funny) when I think of all the crud they accused me of - and I was really sick. I was told to play tennis or stuff a lot.
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