Hope you're recovering well from the operation :)

It's a worrying time wondering about the outcome of the operation. The good thing is that your IGF-1 is a lot less that before your operation and that you're already getting benefits from it.

Do you have any results from the OGTT itself?

The IGF-1 is a single measurement (it's not really the OGTT itself) and GH is a number of measurements over the OGTT, generally 2 hours.

Trys
www.acromegaly.wordpress.com

Thank you for your response. The fasting and 1 hour specimens were in range but the 2 hour specimen was high showing impaired tolerance. Growth hormone, TSH, T4, prolactin all within normal range. Thyroid Peroxidase Antibodies were high.

It is possible for it take longer for your IGF-1 to drop into the normal range. My husand's has dropped slowly for over 2 years now. He had a recent spike, but we are waiting to retest in a few months. I've read a study where some people have had their levels drop into normal 5-10 years after surgery. What was your growth hormone immediately after surgery? As Trys said, OGTT would show if your GH supressed, not what your IGF-1 level was. I'd be curious to hear what your GH was and the results of your OGTT. Sadly, no evidence of tumor on MRI is not a guarantee of disease remission. A few cells left behind are enough to cause elevated levels.

Good luck.

Thanks Worried Wife. Pre-surgery growth hormone was 43 and dropped to 3.9 immediately after. Last test was 4.3 so GH number is in normal range.

OGTT showed fasting specimen 79, 1hour 155 and 2 hour 152 with a reference range of less than 140.

Is your husband on medication or was he ever? This is so confusing and I don't want to go on meds if the number is coming down and will possibly normalize. But I also don't want to do any more harm to my body by not taking meds. But if you do go on meds how will you ever know if your numbers are normal without them? Are you taken off them for a while and then retested? Endo appointment in a month so I want to be prepared as possible. Thank you.

I just read the American Association of Clinical Endocrinologists' Medical Guidelines for Acromegaly. Section 4.7 -R53 states, "if the repeated serum IGF-1 value is reduced from baseline but still elevated at 12 weeks, repeated testing in another 9 to 12 weeks should be considered to determine whether there may be delayed biochemical normalization before proceeding with potential re exploration, medical therapy or radiation therapy. Now I feel like I have something concrete to work with.

Hi, Mimi! My pre op IGF-1 numbers were 543, then came down to 468, but still high for the range of 87-238. About a month post op, they dropped to 245, which was still high for the range of 53-191. We hoped they would drop further, but @ 14 weeks post op, they climbed to 279 with the same range. At that point, he offered me a drug (can't remember which) that was taken by mouth as a possible solution, but did not push, so I declined.

I got busy, and my mom passed away, so the next labs were 7 months post op. I will say that the symptoms were coming back pretty definitively by then. The IGF-1 was up to 359 with a range of 50-317. So, we started Somatuline @ 90mg. It was great, but after 3 months, the IGF-1 was still 205. I wanted it lower, so I told the dr that the last week of the month the symptoms returned (which they did) & requested the max dose of 120mg. Two months later (Sept. 2013), the number dropped to 119, which was better in my mind.

Well, I started feeling lousy....not sure what was side effects & what was acro. Then my TSH came back extremely low. It was dropping on all of my labs but no one paid attention to it. Now I'm screaming, as I've worn a heart monitor, etc among other symptoms. He sent me for OGTT a month or two ago, which was quite low to start, and suppressed further.

At this point, the discomfort of the acro vs the drug is getting clouded together, But , for the past 2 months, I felt best the last week before I am due for the next shot. So, I convinced him to lower it. Not sure where this is going to go, but I am tolerating the 90mg injection this month WAY better than the higher ones the past several months.

I researched & found some articles whereby this can happen. However, my understanding is that IGF-1 is the 'gold standard' test. Apparently, there are some patients in whom this can occur. The only OGTT that is REALLY definitive is one where they draw labs every 15 minutes for 24 hours.....which was only done in a study. It is not possible to do this in clinical settings. But GH can 'spit out' at odd times.

Hope this helps. Personally, I think the onset of menopause aggravated the IGF-1, and that estrogen/estradiol help to keep it down. That is part of why I'm wondering about bioidentical HRT. Still researching........

Thanks, Fran. Your reply is very helpful.

Mimi are you in the states? IMHO your GH levels are higher than what they should be. From what I've read they need to be at least below 2 to 2.5. The reference range for "normal" people is different than that for people looking for remission from acromegaly. They look for a GH level below 2 the first day after surgery as a predictor of long term remission. In comparison to yours, my husband's GH is usually around .17 or .25. With your GH, elevated IGF-1 and a OGTT that showed impaired tolerance, it seems like medication is a reasonable outcome. Having said, there would be no reason not to retest in the future, to see if anything has changed.

My husband has not been put on medication yet. His GH has been very low and his IGF-1 has consistently trended downward since surgery. His GH is too low for an OGTT to be conclusive. His GH was 128 before surgery and was around 2 the day after surgery and subsequently has always been below 1. His IGF-1 started out around 1200 and got as low as 251 (upper reference limit 236). We had recent labs that showed a reverse in this pattern. Retests showed the numbers dropping again. So, now we wait 3 months to restest again. I certainly understand not wanting to be on meds, but if they can help you live longer, I see no choice.

Best of luck to you.

Thank you, Worried Wife - I believe you have just helped me find a possible error on my latest report - I'm thinking my GH of 4.3 is within normal range because results state that it is with a reference range of less than or equal to 10.0 ng/ml - but according to every article I just read it should be 1.0 ng/ml as you state. I will be calling Quest Diagnostic Lab first thing tomorrow morning to question this. Yes, I am in the US - and again thank you so much for your help.

Sorry, you said below 2 to 2.5 - either way, my GH is still too high. Ugggh!

I think this is an issue to address with your neuroendocrinologist, not the lab. The lab doesn't know your medical history or interpret your results. Hopefully, your doctor will be on top of this when you return in June. Since you are only 3 months out of surgery, they are probably gathering evidence to formulate your treatment plan.

Yes - lab told me the same. Thanks again. Will see what I'm told in 3 weeks.

Here's my IGF-1 numbers over time after successful surgery, no meds. If the doctor can't see any residual tumor it is worth being patient. My surgery was Mar. 21, 2007.

Date IGF-1 Level
2/21/2007 917 presurgery
4/11/2007 478
5/14/2007 373
7/6/2007 268
9/6/2007 236
1/7/2008 206
3/3/2008 206
7/1/2008 226
10/6/2008 236 normal
10/21/2008 185
1/10/2009 212
3/6/2009 148
4/21/2009 183
7/14/2010 141
9/6/2011 116
9/6/2013 105

Hi, my heart goes out to you! Acromegaly is a challenging condition to live with but we are all here to support you. You are not alone.
I think that it it is really positive that your surgeon reported no evidence of remaining tumour. However, it is probably frustrating to still have a high IGF-1 level.
I had transphenoidal surgey in 2006, radiotherapy in 2007, Gamma knife radio-surgery in 2012 and currently have Somatuline 120mg injection every 14 days, which is a very high dose. However, despite all of this my IGF-1 is persistently high. So, I have just started taking a low daily dose of 10 units of Insulin although I do not have Diabetes. The idea is that taking a low dose of Insulin will hopefully help to lower my IGF-1. Acromegaly and the effects change slowly, so try to be patient (easier said than done) but hopefully your IGF-1 level will continue to drop to normal. However, if this is not the case then maybe your consultant may consider starting you on a low daily dose of Insulin or Dostinex, which is a another drug that seems to be good at lowing IGF-1 in Acromegaly patients with persistent high IGF-1 levels. Keep positive, we are here to support you!

Cheers,
Jon

Recent blood tests show my GH is 4.3 - and this is within the normal range of less than 10.0. Apparently different labs use different scales to measure this - so thankfully my GH is now normal. IGF-1 is still high - was 508 in April and went down to 410 in end of June. My endo wanted to start me on Octreotide every 4 weeks, but I said I wanted to wait to see if IGF-1 goes down more. So next blood test is in 2 months. Don't want to start medical therapy if I don't need it. I also noticed that I am starting to lose more hair than usual - just read an article that this sometimes happens between 3 to 6 months after surgery. Worst problem right now is that my knees keep going out on me - almost like they dislocate. Lots of pain and swelling - but luckily so far it has only been one knee at a time - and this lasts anywhere from 1 to 3 days and then I am fine for a while. On the positive side, glucose and trigyceride levels are now within normal range and I can get on some shoes I haven't worn in a few years. Thank you all for your advice and your support. You are all in my prayers.