Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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Endocrine System
/ Acromegaly Support Group

High IGF - but near normal suppression on OGGT\GH?

dailymail
dailymail

Hi there, just joined after reading an old post as I researched. In the past 2 years I have been experiencing uncharacteristic weight gain (nearly 7 kilos in the last 2 -3 years) despite no changes in my diet or general activity- also, crippling fatigue, increased hirsutism, sweating and extreme heat sensitivity, some carpal tunnel, anxiety like attacks (never had anxiety before) with tachycardia and breathlessness,  and headaches. In the last year I have weird lumps and bumps coming up all over, my shoulders have grown from a size 10 to 16, hyperpigmented brown  skin and I don't recognise my own face in the mirror.  I am an otherwise fairly healthy 57 year old with Hashimotos and Adrenal Insufficiency. My initial work up came back with elevated IGF-1 levels. We did the OGTT test, but I suppressed normally despite having a midrange baseline growth hormone level. The  endo I saw said the OGGT RULED OUT ACROMEGALY- but I've since read 2 articles that say that's not true. That an elevated IGF1 was the best biomedical marker? He said to totally ignore it, that there's been a trend in Australia towards higher IGF results ie that the test kits may be faulty! But my result is double now what it was in 2012. I thought your IGF drops as you aged. He believes there is no point in doing an MRI as they are sure just to find some lump or bump and it will just worry me for no good reason.  I am an informed consumer and worry when I DONT have all the facts. I have so many features of Acromegaly that I just can't quite believe his dismissal. 


Does a normal suppression result on a OGGT/GH test really rule out Acromegaly 100%? 


 Please reply if you have any input or experience in the diagnosis process - I would really appreciate it. My instincts and research tell me the Professor who said this is uninformed- but I just don't know.. 


Thanks 

alecat67
alecat67
Hello, my you have a complex picture going on here. The OGGT would rule out only growth hormone secretary masses at the pituitary. Secretary issues can happen by many routes so what you may be seeing is other parts of the endocrine system driving up your IGF-1 and leading to many of the symptoms you note. It's the IGF-1 that really promotes the growth aspects, not so much directly GH. So you may well not have pituitary GH secreting tumor, but other hormones Prolactin etc can be secreted from pituitary tumours and others sites. You note adrenal issues, again part of the endocrine system and I have no knowledge of hashimoto's. The endocrine system will drive changes in other hormones to try and compensate for lack or over production of others, the compensation can lead to major issues. Dependent upon what is up and down then that could driving the IGF-1 and growth related symptoms. So could be directly related to compensation of the adrenal and subsequent endocrine issues, or it could be many other things, It would appear the only thing the OGGT has ruled out is a GH secreting tumour at pituitary. Full endocrine hormone screen would seem useful and best not rule out an MRI, have you had any sight issues?
As you may notice from a few posts Acromegaly is not a single condition with a single cause, the genetics of the route cause are complex and can lead to secreting masses on various endocrine organs, eg MEN-1 and 4 mutations.
Good luck, sounds interesting.
alecat67
alecat67
https://www.ncbi.nlm.nih.gov/pubmed/10596968

http://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/dxc-20269764

If you have a look at the abstract in the paper from the top publication, it may be that your thyroid and adrenal conditions are leading to the increased IGF with no effect on GH or need for a GH pituitary issue. So as might be expected your professor may be more correct than your initial thoughts.
Good luck
faith-hope-joy
faith-hope-joy
I would say do your research on which Drs to go to from other patients in a similar situation read real stories online . from what I have read there is a lot of cases where IgF1 is high yet ogtt were suppressed .and also normal IgF1 with an unsuppressed ogtt . Both can happen and people on here have been diagnosed with acromegaly in both these senarios all dependent on the dr they see and the clinical picture . The fact that you have endocrine problems going on already and symptoms should be a red flag . I have had all the symptoms you describe also and am now being tested for cushings disease and apparently my acromegaly symptoms are from insulin resistance (psuedoacromegaly ) which can be caused by cushings disease apparently but my IgF1 was always normal (which I couldn't understand ) the fact that yours is raised should not be brushed under the carpet . But again as the previous poster suggested you already have a few endocrine issues going on so it could be due to that . But I know how you feel you just want it found and treated if there was nothing wrong there would be no symptoms right ?
If you feel hyper /euphoric sometimes and night I would check out cushings good luck to u Hun x