IGF-1 came back very elevated. I'm panicking. How concerned should I be?

[eyeheartny]

Background

• I'm 36. On TRT for six years. 6'2", 215lbs.
• Have had my GP manage my TRT and have never gotten specialist care to get dialed in. I'm in the process of signing up with Defy Medical to have Dr. Saya manage my TRT.
• My GP has had me on 50,000 IU per week of Vitamin D2 after I came back low in December. I was supplementing with additional Vit D (5k IU per day) for a while. I'll explain why this is relevant below.
• I've had a history of cancer; in 2015 I had a rare soft-tissue sarcoma removed that had clearly been there a while.
• I'm on approximately 150-175mg/week of testosterone cypionate, injected EOD. I go back and forth between SubQ and IM.
• I've messed around with lowering my E2 via exemestane before and have been off of it for the last month as I prepare to start working with Defy.

Diet

• I've eaten a high-protein diet for years, with a lot of that coming from red meat, poultry, fish, eggs, and cheese. I can't tolerate whey/casein protein but I get a lot of animal protein and have for a very long time.

Current Situation

• The labs they ordered came back on Friday. I'm still waiting for E2.
• I'll include the major values but the IGF-1 is what's freaking me out. Based on my history and also my understanding of IGF-1's role in tumor growth, I'm in a total panic.
• I'm concerned about acromegaly in addition to other long-term effects of elevated IGF-1.
• No one has tested my IGF-1 before, and I'm concerned that I may have had pituitary issues that caused my low testosterone in the first place, and that for all these years I've had undiagnosed problems that the exogenous t

Questions

• How concerning is this elevated IGF-1 level? I'm very concerned about developing/having acromegaly but am wondering if others here have had elevated IGF-1 and were okay.
• How much of a role could exogenous testosterone play in this elevated level?
• If the exogenous T is elevating my IGF-1, how much of a risk could that be causing for me in terms of future cancer risk/developing acrogmegaly?

Labs (drawn at LabCorp)

• Testosterone 644 ng/dL Ref Range: 296-916
• Free Testosterone 25.3 pg/mL Ref Range: 8.7-25.1
• DHEA Sulfate 354.8 ug/dL Ref Range: 102.6-416.3
• LH <0.2 mIU/mL Ref Range: 1.7-8.6
• PSA 0.6 ng/mL 0.0-4.0
• SHBG 23.3 nmol/L 16.5-55.9
• IGF-1 419 ng/mL 83-233

I've done a search here and have seen a few threads on elevated IGF-1, but I wanted to post my own and get feedback. If any of you have any experiences your IGF-1 being elevated, I'd be grateful for you to share your stories/experiences as well.

 

[Vince Carter]

50000iu of D2...tell me you added a zero there.

Retest IGF-1 though I see no harm in elevated levels such as you have.

 

[eyeheartny]

50000iu of D2...tell me you added a zero there.

Retest IGF-1 though I see no harm in elevated levels such as you have.

Thanks for the reply and reassurance. Definitely didn't add a zero. It's a 50,000 IU dose taken once a week. The trade name is Ergocal. What stood out to you about that dose of D2? Same concerns if it's weekly vs daily?

I appreciate that you said that you don't see cause for concern. Can you help me understand why you're not concerned about that high a value? I am not discounting your opinion-- far from it. More trying to understand why the lab range seems to not really be a good set of guideposts here in your assessment. I've been sitting here thinking this means I may well have a hormone producing pituitary tumor, so your sense of things being in the other direction is something I'd like to understand. Thanks!!

 

[Vince]

Vitamin D2 is different than vitamin D3, the average supplement for vitamin D2 is 5000 IU weekly.

 

[Vince]

While the IGF-1 system undoubtedly plays an important role in cancer development and progression, lower IGF-1 levels also increase cancer risk. Thus, the relation between IGF-1 and cancer mortality is U-shaped, as is the relation between IGF-1 and all-cause mortality. It should be underscored that only low IGF-1 levels seem to be associated with increased cardiovascular mortality, and that the risk of high IGF-1 levels only pertains to cancer mortality (and not cardiovascular mortality)."

Cont:

http://www.brinkzone.com/general-hea...-1-and-cancer/

IGF-1, Testosterone and Cancer

https://www.excelmale.com/forum/showthread.php?9917-IGF-1-Testosterone-and-Cancer

 

[eyeheartny]

I would think it warrants some looking into, but I doubt there’s any reason for panic. It’s my understanding things would be way out of range if there was a pituitary tumor causing extra hgh. If this had been going on a really long time you’d see the physical effects already assuming those levels are high enough.

Could be lab error. Seriously. It’s not that rare.

Thanks. I'm seeing my GP this week and will ask her to retest the IGF-1 level ASAP at a different lab to see if it was an error or a transient high reading. My consult with Dr Saya isn't scheduled yet, so I'll likely have to see a specialist to run this down before then.

In terms of effects, my shoe/wrist size hasn't changed, but I've had some other hard to classify symptoms: feeling warm/heat intolerance, sleep apnea, water retention, weight gain, body hair growth, etc. Of course a lot of those can be related to other issues and are also related to higher androgen levels due to the T or out of whack E2, so it's all pretty confusing.

 

[eyeheartny]

Vitamin D2 is different than vitamin D3, the average supplement for vitamin D2 is 5000 IU weekly.

50,000 IU is standard of care for severe deficiency, which I had on a blood test. This journal article explains.

 

[eyeheartny]

While the IGF-1 system undoubtedly plays an important role in cancer development and progression, lower IGF-1 levels also increase cancer risk. Thus, the relation between IGF-1 and cancer mortality is U-shaped, as is the relation between IGF-1 and all-cause mortality. It should be underscored that only low IGF-1 levels seem to be associated with increased cardiovascular mortality, and that the risk of high IGF-1 levels only pertains to cancer mortality (and not cardiovascular mortality)."

Thanks. The question is less about the impact on cancer than on where my levels fall in that U-shaped distribution. Since testosterone can raise IGF-1 levels, what I'm trying to understand is whether my levels are indeed far outside the norm or whether they are elevated-but-not-shockingly-so for someone on TRT.

 

[Vince]

50,000 IU is standard of care for severe deficiency, which I had on a blood test. This journal article explains.

Sorry typo, I meant to type 50,000iu for vitD2

 

[eyeheartny]

I got some updated/repeat labs. Curious if anyone here has thoughts. Looks like prolactin is totally normal, IGF-1 still elevated, but IGF-1 Binding Protein is also above range, so it appears my body doesn't have enormous free levels of IGF-1 circulating. Still feeling quite concerned.

• Prolactin 5.9 ng/mL Range: 2.1 - 17.7 ng/mL
• IGF-1 397 ng/mL Range: 83 - 240 ng/mL
• IGFBP-3 6840 ng/mL Range: 2474 - 5208 ng/mL

 

[eyeheartny]

Just to circle back on this, I got the results of my oral glucose tolerance test today. Completely normal at all time intervals on the test, with a fully-suppressed GH level. So whatever the cause of my elevated IGF-1, it doesn't seem to be a pituitary tumor secreting growth hormone. My body detects the rise in glucose levels and is able to both produce and respond to insulin and drop the levels of GH. The mystery deepens!

 

[Vince Carter]

Pituitary tumors are examined thru an MRI not some saliva test.

 

[eyeheartny]

Pituitary tumors are examined thru an MRI not some saliva test.

It's not a saliva test. It's a blood test done over 2 hours with a baseline draw, the ingestion of 75g of glucose, and blood draws every 30 minutes of both blood sugar and GH levels to determine whether the GH level is suppressable. Link to full description here, but you can see that this is indeed the standard diagnostic method for acromegaly. Mine was <0.05 ng/mL at all points.

 

[Vince Carter]

Puititary tumors are diagnosed thru an MRI but that was a great post on your part trying to refute that.

 

[MarkM]

Puititary tumors are diagnosed thru an MRI but that was a great post on your part trying to refute that.

Apparently there is more than one way to test for a pituitary adenoma.............

The Journal of Clinical Endocrinology & Metabolism, Volume 94, Issue 2, 1 February 2009

"Acromegaly is a rare disease caused by excess GH secretion, most commonly by a pituitary adenoma. The disease is characterized by failure to suppress GH levels in response to an oral glucose load (oral glucose tolerance test (OGTT)), and elevated serum IGF-I levels."

 

[eyeheartny]

Puititary tumors are diagnosed thru an MRI but that was a great post on your part trying to refute that.

See Vince, I'd be more likely to take you seriously and trust your knowledge if you'd known what an oral glucose tolerance test was. Nothing wrong with not knowing what that test is, but you acted dismissive with your "not some saliva test" comment. No need for your snark, but you brought it. But the best part is you revealed yourself to be ignorant by thinking it was a saliva test, so you're really not in a position to claim any knowledge here.

But let's pretend you hadn't shown yourself to be a fool. If your reading comprehension were intact, you'd notice I never said I didn't have a pituitary tumor. My post specifically says I don't think it's a "pituitary tumor secreting growth hormone." Notice the last part? I specifically said that it doesn't seem to be a growth hormone secreting tumor because I'm not producing excess growth hormone. So let's review. You came in here acting like an expert, demonstrated your lack of knowledge, didn't read my post carefully, and showed your a$$ by acting like a pr!ck when you got called out. Bad form. Do me a favor and stay out of this thread of mine or any others I post. Your contributions aren't welcome and aren't helpful, especially since they come with the extra cost of your bad attitude. Good luck to you.

 

[eyeheartny]

Apparently there is more than one way to test for a pituitary adenoma.............

The Journal of Clinical Endocrinology & Metabolism, Volume 94, Issue 2, 1 February 2009

"Acromegaly is a rare disease caused by excess GH secretion, most commonly by a pituitary adenoma. The disease is characterized by failure to suppress GH levels in response to an oral glucose load (oral glucose tolerance test (OGTT)), and elevated serum IGF-I levels."

Thanks Mark. I think the distinction Vince missed is between a pituitary adenoma and acromegaly. I have no other symptoms of pituitary disease (normal prolactin, expected low FSH/LH being on TRT, etc) and the only abnormal result is the elevated IGF-1. So the labs raise suspicion of a pituitary adenoma producing excess growth hormone, which would be signaling the liver to produce IGF-1. But since I did not meet the criteria for acromegaly, we can assume that there isn't a pituitary tumor that's producing growth hormone. Vince is partially right that I may still have a pituitary tumor, but it isn't one that's producing GH, because the OGTT demonstrated that my body does in fact suppress GH levels in response to the glucose load. I think Vince is just a little confused on terms and concepts, but you're absolutely right that there are other ways to diagnose acromegaly.

Anyhow, I have an MRI in about an hour that will be definitive here, but my endocrinologist described the OGTT results as "reassuring," even though we don't know why I present with elevated IGF-1.

 

[MarkM]

So much of our health related matters can be really technical, at least for me. Being a layman there is so much I don't know or understand. Vince Carter is a pretty knowledgeable member of the forum and I believe he always means well and wants the best for you and all members on the forum.

 

[eyeheartny]

So much of our health related matters can be really technical, at least for me. Being a layman there is so much I don't know or understand. Vince Carter is a pretty knowledgeable member of the forum and I believe he always means well and wants the best for you and all members on the forum.

100% agree. I appreciate what you're saying. I approach all this with a spirit of self education. I was startled by Vince's tone and while there may be something lost in text versus voice, Vince's "gotcha" approach really rubbed me the wrong way. I try whenever possible to link to research so we can all make sure we're as knowledgeable as possible, and if I'm wrong I'm the first to admit it. At the same time, I don't think it's helpful to be both overly sure of ourselves or to be nasty to other members who posted facts that were instructive.

Anyhow, thanks for the links Mark. I'll report back in this thread as I get more data. Heading out now for the MRI.

 

[MarkM]

Posts are like emails. Many time the way we read them is not the way it was meant to be read. So many of our forum members are trying to respond on mobile devices or maybe from work. This is hard to do and sometimes the response is shorter than we might normally post and come across as harsh or curt when that was never meant to be the case.

We hope you get a good report back on the MRI this afternoon.