Mildly elevated IGF-1

[Whatnow714]

Had hormone testing late July-cortisol am was 25.5 (19.4); FSH elevated at 169.7 (134.8-postmenopausal high normal) but I'm surgically menopausal so I have no ovaries-is an FSH even diagnostic?  

Other abnormal was IGF-1 212 (191); TSH AND T4 both elevated 5.40(4.20) and 3.1 (2.7) by equilibrium dialysis respectively. T4 was retested in August again by equilibrium dialysis and was within normal range; awaiting September's results.

Retested -- cortisol was not retested; FSH 156.7; IGF-1 218 now-so a slight increase but still only mildly increased.
I have no signs of acromegaly-in fact, the opposite--petite 110# with no obvious physical changes; was just diagnosed with cardiomyopathy but that's about the only remotely possible symptom of acromegaly.

Any suggestion as to follow up?  Glucose test, MRI, or maybe just repeating labs in a few months?

[rumpled]

I am not familiar.

I have POTS myself but I don't do research on it.

Hope your insurance is good!

[Whatnow714]

Thanks so much for your response. I dread having to go out of state for a specialist and then have to continually go there for visits and testing but I know it's the best option-just hope my insurance agrees!!  

I will ask my current endo if there are any in state but I highly doubt it-we are too close to larger cities and medical centers I'm sure.

Are you familiar with paraneoplastic syndrome?  I know it's rare but it has shown up in research of POTS and pit and probably more searches; it's complicated reading-most times clinical. Wondering if some sort of hidden cancer is causing all of this?   Not that I want cancer again but if it's small enough and treatable, it could be the answer to my prayers.

Thanx again!

[rumpled]

Two elevated tests... no - you need more testing. But by a specialist.
You have other oddities that should make the doctor think that more can be going on - so she she/he should be testing more, and looking to see if something else is going on AND referring you on to a specialist. The specialist can then do the stim test (properly).

Yes, hormones run in loops so when one elements is missing, the pituitary can go crazy and try to signal harder - but they account for that in the post-menopausal ranges. I know I had that line given to me by an endo (a specialist) as one of my hormones is wildly high - my adrenals are out, and my pit hormone should be between 300-600, with 1000 being abnormal. Mine was last near 4000 before they suppressed me but no one can *answer* why. I know it is my dang tumor cells left behind that they cannot see.

[Whatnow714]

I am so frustrated I even asked my endo for these tests... more to worry about.  I asked because I was recently diagnosed with POTS and grasping at straws to try to find a cause and not really having a true POTS specialist, I was doing the research and requesting tests myself!!   Big mistake!!  

One dr explained the high FSH was due to my body constantly trying to stimulate ovulation which was impossible-not sure about that answer though; not sure about anything any more; so tired of tests and weird results.

I've also researched elevated IGF-1 can indicate a malignancy of the breast, colon, pancreas, adrenals, or lung so now that's got me concerned!!  

Also, just diagnosed with cardiomyopathy which so far they don't think could be acromegaly related but who knows.

I just don't know where to start and how to connect all of this all at once-even if they're connected at all!!

Rumpled-do you think a good start with my current endo would be the glucose test-I know you're not a professional but it looks like you have good advice.

Too much in the last 3 months!!

[rumpled]

Uh... if you don't have ovaries and your FSH is that high, I would find that a bit odd!

I would find a pituitary center and a neuro-endo.

Early stages of acromegaly should be investigated. It is GREAT you don't show the physical signs. Then you won't. Why wait until you are deformed and then have to live with that forever and a 6-year old can diagnose you (aimed at silly doctors, not you...).

Please please find a good doctor and follow up - your tests are indicative of a pituitary issue and better to get it ruled out or in by a proper expert. Find a larger hospital or university center with a pit center. Keep us posted. Great you get copies.