As part of a workup for potential acromegaly (due to elevated IGF-1), my endocrinologist (not the doc who follows me for TRT) asked me to take 4 weeks off my TRT to see if it normalized my IGF-1. I’d been on TRT nonstop since April 2012, so 6.25 years. On August 21st I had my last shot (for the time being). I will go back on after another round of bloodwork this coming week.
On Tuesday September 4th, I had interim bloodwork done to see how things were showing up for T and IGF-1. My levels were lower than I’d expect based on the half-life of cypionate and I’m wondering if this tells me anything about how my body handles testosterone.
As an example:
Steady-State TRT Levels, Prior to Coming Off
Testosterone 805.65 ng/dL Ref Range 123.06 - 813.86 ng/dL
Free Testosterone 191 pg/mL Ref Range 47 - 244 pg/mL
No Shots for 14 Days:
Testosterone 127 ng/dL Ref Range 264 - 916 ng/dL
Free Testosterone 4.3 pg/mL Ref Range 8.7 - 25.1 pg/mL
Here’s what I’m wondering:
Based on an average half-life of 8 days, I would expect that my remaining testosterone levels after stopping abruptly would be higher than they were.
Is this reasonable, or does an 85% drop in testosterone levels after 2 weeks of no shots seem lower than expected?
If this is unusual, could this tell me anything about SHBG levels, aromatization, or other pathways that regulate T levels in my body?
I know half-lives are an average but I’m wondering if this level is at all helpful to learn something about my unique physiology.
Did you take any H.C.G with your last remaining SHOT of Teststerone?? reason i ask this man is because the LH signal from HCG could of kept some extra Testosterone Flowing" @InCorporeSano
Thanks. That’s what I suspected this meant. What would you expect to see at 2 weeks for someone who cleaves at the normal rate and metabolizes normally?
Any idea what causes this? I’m curious. I’m also wondering how to deal with it when I’m back on? I was on EOD shots for years. I experimented with every day but it’s not my favorite to pin once a day. EOD seems like the perfect schedule. Would this call for higher or lower doses? Eager to hear whatever you can share.
I didn’t mean it like that, If you was on some HCG Man it would of kept some TEST left in your system, but since you just taken Testosterone Alone & came off, that explains what happened to you above. I feel for you Bro, and should get back on the Testosterone from your Endo.
What was your dosage before? If that was working for you, and I assume it was based in the 6.25 years of TRT and your pre halt levels, then I would slowly walk back up to that level. Beings you crashed so hard, I wouldn’t immediately go back to it. Wild fluctuations can cause some other issues.
Example…
If your previous regimen was 200mg per week total utilizing eod injections of 50mg, then start with 25mg eod for a couple weeks. The step it up every couple weeks by around 5mg-10mg eod until you get back to your original stable dose.
Sucks that he asked you to just stop altogether like that after 6.25 years of steady TRT. That obviously played hell on your body.
I was on 50mg EOD. 175mg/week averaged over two weeks (some weeks 3 shots, some weeks 4 shots).
I was pretty frustrated that she asked me to stop. But it makes sense. My IGF-1 is really elevated and so we’re trying to figure out what is causing it. I’ve had a pituitary MRI (low-res, but it didn’t show anything worrisome), an Oral Glucose Tolerance Test (fully suppressed growth hormone level, which is what you want to see), and nothing seems amiss. But high IGF-1 can be problematic in the long run, so we have to find a cause.
Anyway, I’ll be going back on ASAP, hopefully this coming week once I have a final set of blood work to look at a true bottomed-out level. I can tell you that it feels like shit to go from top of the range to below range!
In terms of stepping up the dose, can you help me understand why that’s preferable? I was thinking of doing a 100mg dose to start back up and then going back to my EOD shots, with some Aromasin taken prophylactically to help manage the inevitable E2 spike. I have Arimidex as well but respond much better to Aromasin.
I had to stop everything altogether for a month. And then I’ll be going back on ASAP. We had to eliminate some variables to make sure the testosterone wasn’t the cause of the elevated IGF-1.
TRT has been known to raise ones IGF-1 lets hope that is not what is happening with you.
Since you have been shutdown for so long I’ll bet your T goes to zero by the end of your month of being off. I can’t believe your doctor would not have tried to restart your natural production before asking you to go off your script. She sounds scary. No matter what she comes up with for your elevated IGF-1 I’d get a second opinion.
It’s more likely you are just dealing with an incompetent doctor vs a hormone expert. A lot of men who have excellent testosterone levels have elevated IGF-1, I don’t see doctors prescribing hormone damaging/lowering medications to those men, so stopping TRT makes no sense.
From personal experience my T levels crashed to darn near zero after stopping injections for a 1 month period. They immdiatly rebounded once I restarted treatment. As such I think you’re probably ok, and just need to get through a hard month.
Questions for you. What symptoms is your IGF-1 causing? Are you concerned about acromegaly? How did your levels respond once quitting T? Any cancer screens/markers tested?
I also have very high IGF-1 for no apparent reason. No idea what to do about. Please share what you learn and I’ll do the same if I figure anything out.
As a cancer survivor this aspect definitely concerns me. I’ve talked to my doc about it, but there are zero indicators of anything happening anywhere. IGF-1 does indicate cellular activity, but not sure if some guys run higher than others…similar to T or cholesterol etc. Needless to say, I’m very interested in following this post.
This all started because I started my onboarding with Defy Medical. As part of the panel, my IGF-1 came back elevated. Dr. Saya encouraged me to have a workup with an endocrinologist for this issue. I have a history of cancer-- a very rare soft-tissue sarcoma-- so I was obviously concerned.
She gave me the option of not stopping, but encouraged it as she said it would help us eliminate one potential variable. Her interest was not in me stopping permanently, but just enough to get a sense as to whether my IGF-1 would come down in the absence of high testosterone levels. It makes sense as an experiment, as crappy as it has felt.
Anyway, as soon as I’m back on and get back to “normal” for me I’ll be back working with Dr. Saya at Defy.
Do you have any links you can share to articles documenting the high-T/elevated IGF-1 connection? I haven’t been able to find any. My levels were way out of range-- almost 2x the upper limit of normal. The tests have ranged from 1.3x ULN to 1.8x ULN, so either I just have extremely high IGF-1 or something else is going on. I’m concerned about subclinical/preclinical acromegaly.
Lots of notes below, I replied to each section as there’s a fair amount to discuss here.
What were your IGF-1 levels? I’d like to know-- interesting that there may be a few of us. Have you had an oral glucose tolerance test or a pituitary MRI to rule out a hormone secreting pituitary adenoma?
I’m a cancer survivor as well. Just got my 3-year clear this past week. Hope you are doing well and having a durable remission. What type of cancer did you have? Mine was an ultra-rare soft-tissue sarcoma. No chemo/radiation, just some BRUTAL surgeries to excise the tumor and then do a major reconstruction to put me back together.
Agreed that it’ll be a rough transition, but I’m hoping to get back on my shots later this week. I’m aborting this experiment a week earlier than my doc wanted but we’ll have several data points about the IGF-1.
No symptoms at all. This came up during my onboarding bloodwork with Defy Medical.
Yes, I’m definitely concerned about acromegaly as I don’t want to have those issues and reduced lifespan/higher mortality. I don’t have any obvious signs/symptoms of acromegaly (hands/feet are same size, no weird skin issues, no diabetes). At the same time, I have a heavy browline and big facial features anyway, so it’s hard to know whether there have been any slow/small changes that aren’t just attributed to aging.
My IGF-1 levels came down about 10% while my T dropped 85% in the same time interval, so it doesn’t seem to be tied to my T injections whatsoever.
In terms of cancer screens, I had my PSA tested (very low, no issue there). No evidence of liver disease, my liver enzymes look great. That’s important because IGF-1 is actually produced in the liver even though the signal comes from the pituitary. In some cases of liver failure, there is high IGF-1.
Prolactin totally normal as well, so if there is a pituitary issue it’s not a tumor secreting prolactin as well as GH.
Literally the only thing that’s worrisome is this elevated IGF-1. I had an oral glucose tolerance test that showed that I’m not producing excess GH, but there are case reports of people with tiny, tiny (like 3mm) microadenomas on the pituitary that were causing elevated IGF-1 without high GH on the OGTT.
The MRI didn’t show any gross abnormality. There was one small area on one side of the pituitary that was described as “There is slightly heterogeneous enhancement with no definitive lesion identified.” On this low-res MRI that could be all that would show up if I have a tiny microadenoma.
I see this doc in 10 days to discuss the no-T experiment and make a game plan going forward. I’m going to ask her to do a high-resolution MRI (3 or 7 Tesla field strength vs the 1.5 Tesla standard field strength) in order to take a really close look at the pituitary and that “slightly heterogeneous enhancement” area. The good news is that if it is a tiny tumor, the surgery is not crazy and people with this type of disease have good long-term results and normalization of IGF-1 levels post-surgery.
What about you? Any imaging or blood work other than high IGF-1? How old are you? How long on Testosterone? Any symptoms, risk factors, or issues related to the IGF-1?
Interesting. I wonder if we can get @physioLojik to weigh in over here. I’ve never had bloodwork that indicated low thyroid, but I have had slow weight gain, difficulty losing fat even with tight diet/hard training, fatigue, and other symptoms of low thyroid. I wonder if it’s possible that my elevated IGF-1 could be caused by subclinical hypothyroidism?
My levels are in the 350’s. I’ve never had the glucose test, but I did have a pituitary MRI. The MRI was clean.
We are twins. No joke. I had the exact same experience. I was diagnosed with Chondrosarcoma at 26. Tumor was in the cartridge of my chest wall. Lost 33% of my right chest wall, lat, piece of diaphragm, lung…all the good stuff. I’m now 36 so 10 years out, however my son who is 6 was diagnosed soft tissue cancer at 5 months. He went through worse surgery than me, plus 2 years of chemo. I hate cancer.
Again, we are twins. I have zero symptoms, literally none. MRI done, 36, and on T for ~2 years now. My treatment is going great too. All positive, zero issues.
You’re a little lower than me, but not dramatically so. My last level was 383, so we’re in the same ballpark. Strange and interesting that there’s no explanation. I guess I’ve seen case reports where people were in the 900-1800 range when they had untreated acromegaly. I guess that’s a little reassuring? Although I’m not thrilled with the research about earlier death/higher risk factors for cardiovascular issues related to high IGF-1.
Oh man, I’m so sorry to hear about your little one. That’s awful. How’s he doing now? That’s uncanny about how similar our stories are. I was diagnosed at 33 and am 36 now. Wild.
I wonder if we’re the kind of people who just have elevated IGF-1 and would skew the numbers if we were part of a study? I guess the ranges are just that-- averages across the population that’s going to have outliers. Are you actively monitoring your bloodwork for IGF-1 on an ongoing basis? I’m thinking that if I have a high-res MRI that doesn’t show anything of note, I will ask for IGF-1 labs every six months going forward to monitor. Should be frequent enough to catch a disease process on the earlier side if there is one. If the higher field strength MRI does show something I think I’m going to have it removed ASAP just to know that I’ve done everything possible to address this.
Pretty freaky. On some level I’m finding this harder in terms of anxiety than my tumor. In that case we knew what it was, where it was, and what had to happen to deal with it. This feels way more amorphous and hard to pin down-- we know something is abnormal, but not what’s causing it or what to do about it. Difficult to just have to sit with that. Maybe you’re like me in that if there is something wrong you just want to plow ahead and deal with it ASAP, but not having a direction to go in is incredibly frustrating.