Endo Results! High Igf 1?

[s-pot]

So!! I had a work up of Pituitary function two weeks ago by a new Endo in the hospital.

I Had a Pituitary Microadenoma diagnosed on MRI 18mths ago 4mm size, increased to 5-6 mm in recent MRI which has always been diagnosed as an "Incidentaloma"

Results were in today:

Insulin Growth Factor 1 Elevated 330 (Range 77-271)

Prolactin Borderline raised 552 ( Range 102-496) (Could be stress I was in pots relapse)

Oestrogen Low (Dont have exact result was just told was low, it has always come back low)

Total Testosterone Borderline elevated 2.5 (range 0-2)

Cortisol 08:30 656? Normal?

Short Synacten Normal 676 pre 08:00

750 @ 30 mins post synacten

Dexa cortisone Suppression 621 pre 08:00

Normal <30 post

My headaches have really worsened over the last 6-8mths, I have developed visual disturbance also. POTS Is unstable and My menstrual cycle is irregular and problematic! I REALLy believe this pituitary growth is causing some of my problems and am SO fed up of having nobody in the medical field look at the whole picture,....my symptoms, dysautonomia, the pit growth and now the blood work and join the dots!

I do not have any signs of acromegely (i read this can be caused by high IGF 1 & pituitary tumour) I am female mid twenties only 5ft tall and petite....so definately a million miles away from what signs they would be looking for with these results!

The new endo is very good but knows nothing about Dysautonomia, I have yet again been sent away with another 'we will wait and see' scenario. Another MRI in 6mths, repeat IGF1 in 6months and other bloods and a referral to Neurology for the headaches.

My frustration is it never seems to matter what comes back abnormal I always get fobbed off with the wait and see! Im wondering what are we waiting for to acknowledge that it mite not be an 'incidentaloma'!? More obviously elevated blood results? A much bigger increase in the growth? Till i get alot sicker and cannot function??

No one acknowledges my symptoms or that ANY of the above proven medical results could/might/maybe!! even causing some of what is going on . Pretty frustrated at the moment!!

I am wondering does anyone know anything about IGF 1? The slightly elevated prolactin was thrown out as stress. No explanation for the reoccuring low oestrogen. The Free testosterone was normal so he said the Total testosterone was not indicitive of anything.

Anyone any idea of what kind of doctor/specialist may be able to help join all these dots for me? At present I am linking in with a dysautonomia unit, endocrinologist, gynaecologist....and now a referral to a neurologist! But none of these seem to be able to piece the different bits together and I feel like im falling down inbetween them all and getting nowhere!

[Guest Alex]

s-pot,

I've been evaluated for a pituitary tumor as my blood levels of prolactin have been quite elevated (almost 4 times the normal limit) and my MRI came back "unremarkable". Like you, I feel that there has to be a connection between my elevated prolactin and my dysautonomia but I have yet to find it. I've put this on the back burner for the time being as I am pursuing other avenues right now, but I am definitely going to follow this up with my drs.

The synacthen (ACTH stim) test and the dexamethasone suppresion test are supposed to check your adrenal glads, and it's a good thing that they both came back normal - the hormones secreted by the pituitary can influence a lot of other hormones secreted by the body.

Have you ever had your GH (growth hormone) levels checked? I believe one of the causes for an elevated level of GH is a pituitary adenoma, so I think that your blood test results (the elevated IGF-1 which usually goes hand in hand with an elevated GH), combined with your previous MRI findings, your headaches and the visual disturbances should be more than enough reasons for your dr to want to follow up on your pituitary "incidnetaloma". Perhaps you can get to see a pituitary specialist if your neuro doesn't want to pursue the matter any further.

Best of luck and I hope you figure things out soon.

Alex

[Katybug]

Have you considered seeing a reproductive endocrinologist? They may pay more attention to these results. From my pre vet days in endocrinology class, there is a link between estrogen and testosterone..... it takes one to make the other so low estrogen and high testosterone may very well mean something is off. And of course the pituitary hormones control all of those other hormones ultimately. I certainly understand why you are concerned. The other option might be an integrative medicine doctor.

[sue1234]

I had a pituitary MRI about 6 years ago that showed "normal". I sent it off to a neurosurgeon, and he said he saw two areas that could represent microadenomas, but without labs backing them up, there was nothing to be done. Since you possibly have labs to back the MRI up, it might be wise to see a neurologist that specializes in pituitary issues.

I am not familiar with your lab ranges, so don't know how to understand your results. It does look like you didn't go up very much during your stimulation test. Normal is to at least DOUBLE.

I don't know much about the IGF test, but do believe other things than a pit tumor can influence it.

I think them sending you to a neurologist is a good idea.