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Elevated Growth Hormone (And Igf-1) - Why?

nvsmom

By nvsmom
in Related Issues & Disorders

Recommended Posts

nvsmom Community Regular
nvsmom
Posted

I've been having some strange blood tests and I'm trying to find the root cause. I mentioned this problem a few months ago in another thread but I'm still chasing it and trying to figure it out, so I thought I'd put it out there and see if anyone knows about it around here... I do doubt it's celiac related though.

 

In the spring, a doctor I went to discovered I have a high IGF-1 (insulin-like growth factor) which shows the overall trend of the amount of growth hormone (GH) in your body. A high result is very weird in a celiac; we tend to be on the low end of the range or below. So many celiac kids have delayed growth because malnutrition will lower GH in the body (and IGF-1 comes down as a result).

 

I had it tested again a month later to check it and it was at the very top of the normal range. The testing doctor declared me normal and refused to re-test or pursue it. I asked my family doctor to re-test or look into further tests and he refused and told me to find another doctor. I finally found another family doctor, Dr D, and she retested my IGF-1 for me and it was slightly above normal this time. She is looking into further testing for me.

 

The normal reference range for IGF-1 is 109-284. These are my results:

  1. May =  401 (H)
  2. June =  283
  3. Oct =  297 (H)

I'm concerned because elevated IGF-1 causes acromegaly and can lead to a shorter lifespan as well as increased risks of cancer (where excesive growth is bad). Elevated IGF-1 is usually caused by a benign adenoma on the pituitary gland which is just in front of the brain. My results aren't crazy high like some acromegaly patients get, but I'm guessing it's like celiac disease and we don't all test similarly. Anyway, if anyone has experience in this, I'd LOVE to hear about it!

 

At the moment, my new doctor, Dr D, is looking into trying to get me the oral glucose tolerance test for growth hormone suppression (OGTT for GH). That should tell us a lot - if I don't suppess, then I have a problem. My worry is that the endos will tell her to ignore it because my labs are not "abnormal" enough. Doctors did that to me for 15 years with my hypothyroidism, and I don't want it to happen again. I lost a LOT of years of good health to that...

 

There is a slim chance that the T4 or T3 hormones in the natural desiccated thyroid I am taking has messed with my GH levels. I found artlcles touching on it here and here too, but it's hard to find anything not related to the livestock industry. :rolleyes:

 

My plan in the meantime:

I am cutting carbs and starches, trying to stay in ketosis, and dabbling in fasting in an effort to see if I can affect my labs. I eat pretty well so it shouldn't alter things too much. I won't change my thyroid meds from NDT - I feel good on it so I won't test that theory.... I'm out of ideas after that. :huh:

 

Any ideas? I don't expect this is a common worry in these boards. Most of us will deal with growth hormone deficiency, not excesses.

 

Thanks.

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papaya10 Newbie
papaya10
Posted

I've been having some strange blood tests and I'm trying to find the root cause. I mentioned this problem a few months ago in another thread but I'm still chasing it and trying to figure it out, so I thought I'd put it out there and see if anyone knows about it around here... I do doubt it's celiac related though.

 

In the spring, a doctor I went to discovered I have a high IGF-1 (insulin-like growth factor) which shows the overall trend of the amount of growth hormone (GH) in your body. A high result is very weird in a celiac; we tend to be on the low end of the range or below. So many celiac kids have delayed growth because malnutrition will lower GH in the body (and IGF-1 comes down as a result).

 

I had it tested again a month later to check it and it was at the very top of the normal range. The testing doctor declared me normal and refused to re-test or pursue it. I asked my family doctor to re-test or look into further tests and he refused and told me to find another doctor. I finally found another family doctor, Dr D, and she retested my IGF-1 for me and it was slightly above normal this time. She is looking into further testing for me.

 

The normal reference range for IGF-1 is 109-284. These are my results:

  1. May =  401 (H)
  2. June =  283
  3. Oct =  297 (H)

I'm concerned because elevated IGF-1 causes acromegaly and can lead to a shorter lifespan as well as increased risks of cancer (where excesive growth is bad). Elevated IGF-1 is usually caused by a benign adenoma on the pituitary gland which is just in front of the brain. My results aren't crazy high like some acromegaly patients get, but I'm guessing it's like celiac disease and we don't all test similarly. Anyway, if anyone has experience in this, I'd LOVE to hear about it!

 

At the moment, my new doctor, Dr D, is looking into trying to get me the oral glucose tolerance test for growth hormone suppression (OGTT for GH). That should tell us a lot - if I don't suppess, then I have a problem. My worry is that the endos will tell her to ignore it because my labs are not "abnormal" enough. Doctors did that to me for 15 years with my hypothyroidism, and I don't want it to happen again. I lost a LOT of years of good health to that...

 

There is a slim chance that the T4 or T3 hormones in the natural desiccated thyroid I am taking has messed with my GH levels. I found artlcles touching on it here and here too, but it's hard to find anything not related to the livestock industry. :rolleyes:

 

My plan in the meantime:

I am cutting carbs and starches, trying to stay in ketosis, and dabbling in fasting in an effort to see if I can affect my labs. I eat pretty well so it shouldn't alter things too much. I won't change my thyroid meds from NDT - I feel good on it so I won't test that theory.... I'm out of ideas after that. :huh:

 

Any ideas? I don't expect this is a common worry in these boards. Most of us will deal with growth hormone deficiency, not excesses.

 

Thanks.

IGF-1 Testing at high normal for your age is an annual testing thing at most. However, you are more educated than most on this matter and can continue to research. I do the same thing. I have a thought fro all celiac patients. If the gliadins that lodge in the intestine are undigested proteins, why are they undigested? Possibly Hydroclorhydria (low  stomach acid production)  Symptoms include reflux but with the domino of stomach acid down many more dependent digestive enzymes like pepsin also fall along with B-12 and absorption of Iron and Calcium besides bacterial intrusion in the absence of sufficient acidity to stop them.

 

At my age I woul like a little more growth hormone or its angiogenic properties which help maintain autonomic neural function and in the replacement of the intestinal lining. It is well known that IGF-1 is very helpful in cases of diabetes related autonomic neuropathy. Mine all went away when I used it for several months, and my night breathing became regular. So IGF-1 is my hero.

 

Aloha nui

frieze Community Regular
frieze
Posted

I've been having some strange blood tests and I'm trying to find the root cause. I mentioned this problem a few months ago in another thread but I'm still chasing it and trying to figure it out, so I thought I'd put it out there and see if anyone knows about it around here... I do doubt it's celiac related though.

 

In the spring, a doctor I went to discovered I have a high IGF-1 (insulin-like growth factor) which shows the overall trend of the amount of growth hormone (GH) in your body. A high result is very weird in a celiac; we tend to be on the low end of the range or below. So many celiac kids have delayed growth because malnutrition will lower GH in the body (and IGF-1 comes down as a result).

 

I had it tested again a month later to check it and it was at the very top of the normal range. The testing doctor declared me normal and refused to re-test or pursue it. I asked my family doctor to re-test or look into further tests and he refused and told me to find another doctor. I finally found another family doctor, Dr D, and she retested my IGF-1 for me and it was slightly above normal this time. She is looking into further testing for me.

 

The normal reference range for IGF-1 is 109-284. These are my results:

  1. May =  401 (H)
  2. June =  283
  3. Oct =  297 (H)

I'm concerned because elevated IGF-1 causes acromegaly and can lead to a shorter lifespan as well as increased risks of cancer (where excesive growth is bad). Elevated IGF-1 is usually caused by a benign adenoma on the pituitary gland which is just in front of the brain. My results aren't crazy high like some acromegaly patients get, but I'm guessing it's like celiac disease and we don't all test similarly. Anyway, if anyone has experience in this, I'd LOVE to hear about it!

 

At the moment, my new doctor, Dr D, is looking into trying to get me the oral glucose tolerance test for growth hormone suppression (OGTT for GH). That should tell us a lot - if I don't suppess, then I have a problem. My worry is that the endos will tell her to ignore it because my labs are not "abnormal" enough. Doctors did that to me for 15 years with my hypothyroidism, and I don't want it to happen again. I lost a LOT of years of good health to that...

 

There is a slim chance that the T4 or T3 hormones in the natural desiccated thyroid I am taking has messed with my GH levels. I found artlcles touching on it here and here too, but it's hard to find anything not related to the livestock industry. :rolleyes:

 

My plan in the meantime:

I am cutting carbs and starches, trying to stay in ketosis, and dabbling in fasting in an effort to see if I can affect my labs. I eat pretty well so it shouldn't alter things too much. I won't change my thyroid meds from NDT - I feel good on it so I won't test that theory.... I'm out of ideas after that. :huh:

 

Any ideas? I don't expect this is a common worry in these boards. Most of us will deal with growth hormone deficiency, not excesses.

 

Thanks.

http://www.us.sandostatin.com/health-care-professional/acromegaly/diagnosis.jsp?usertrack.filter_applied=true&NovaId=4029462092064793718

have you done a glucose tolerance test?

and I am not so sure that it is a "cause" but a "marker of".....

nvsmom Community Regular
nvsmom
Posted
  • Author

IGF-1 Testing at high normal for your age is an annual testing thing at most. However, you are more educated than most on this matter and can continue to research. I do the same thing. I have a thought fro all celiac patients. If the gliadins that lodge in the intestine are undigested proteins, why are they undigested? Possibly Hydroclorhydria (low  stomach acid production)  Symptoms include reflux but with the domino of stomach acid down many more dependent digestive enzymes like pepsin also fall along with B-12 and absorption of Iron and Calcium besides bacterial intrusion in the absence of sufficient acidity to stop them.

 

At my age I woul like a little more growth hormone or its angiogenic properties which help maintain autonomic neural function and in the replacement of the intestinal lining. It is well known that IGF-1 is very helpful in cases of diabetes related autonomic neuropathy. Mine all went away when I used it for several months, and my night breathing became regular. So IGF-1 is my hero.

 

Aloha nui

High IGF-1 can be good but elevated levels can be serious and triple your mortality rate. It also causes snoring and sleep apnea because of increased tissue growth, which can be slightly disfiguring.... Moderation is best for IGF-1, IMO.

 

I'm not sure what you are getting at about the low stomach acid.

 

 

http://www.us.sandostatin.com/health-care-professional/acromegaly/diagnosis.jsp?usertrack.filter_applied=true&NovaId=4029462092064793718

have you done a glucose tolerance test?

and I am not so sure that it is a "cause" but a "marker of".....

 

I have not done an OGTT for GH suppression yet, but I am hoping too.

 

And no, the OGTT is not a cause ... Do you mean high IGF-1 levels are not a cause of acromegaly? I guess that is correct technically speaking because a pituitary tumour causes elevated levels of IGF-1 which cause acromegaly...But then you could keep going backwards and point to whatever caused the tumour (I would guess partially diet). Of course, a quarter of all people end up with a pituitary adenoma but do not develop acromegaly - that only happens if excess IGF-1 is made.

  • 2 weeks later...
nvsmom Community Regular
nvsmom
Posted
  • Author

Well, they're referring me to endocrinology.... Maybe I'll find out some more answers by the new year. :)

frieze Community Regular
frieze
Posted

Well, they're referring me to endocrinology.... Maybe I'll find out some more answers by the new year. :)

hope so, and may they be positive (good) or at least easily fixable.

GF Lover Rising Star
GF Lover
Posted

Well, they're referring me to endocrinology.... Maybe I'll find out some more answers by the new year. :)

 

Nicole,

 

I'm glad its getting looked into further.  These "Mysteries" can be so difficult to pin down. 

 

Colleen

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nvsmom Community Regular
nvsmom
Posted
  • Author

Thanks guys.  :)

  • 1 year later...
Caturday Newbie
Caturday
Posted

Hi. I know this is an old thread, but nvsmom, I didn't know if you'd had any more investigations for this? I've had high IGF-1 readings but I don't have many symptoms of acromegaly. I'm waiting to find out more but in the meantime I'm trying to research what happens if there's high IGF-1 but no pituitary tumor found.

 

I have had some testing for celiac prior to all this due to ongoing digestive problems (apparently negative, although I know it's often not that simple), so hopefully I'm allowed to post here!

nvsmom Community Regular
nvsmom
Posted
  • Author

Hi. I know this is an old thread, but nvsmom, I didn't know if you'd had any more investigations for this? I've had high IGF-1 readings but I don't have many symptoms of acromegaly. I'm waiting to find out more but in the meantime I'm trying to research what happens if there's high IGF-1 but no pituitary tumor found.

 

I have had some testing for celiac prior to all this due to ongoing digestive problems (apparently negative, although I know it's often not that simple), so hopefully I'm allowed to post here!

 

Hi Caturday,

I was tested for acromegaly using the glucose tolerance test for growth hormone supression.  Those with acromegaly don't suppress (usually) their GH after the sugar drink and I did so it is assumed I don't have acromegaly.  I don't have a lot of sympytoms, and the ones I do have are really mild and vague - it could be attributed to other things - so I am proceeding as though I am fine, although I will have my IGF-1 retested over the next few years to see if it continued to come down.

 

To be honest, all research I found that connected IGF-1 to celiac disease discussed how celiac disease can lower IGF-1 in people, which is why children often have slowed growth before they are diagnosed. I could find nothing about high IGF-1 and celiac disease.

 

I had strated taking a T3 and T4 thyroid mediaction a couple of weeks before my high IGF-1 was discovered so I am hoping that the T3 raised my IGF-1.  I found studies (about sheep I think it was) that looked into that.

 

And welcome to the board.  This is a site for anyone who is going through testing, has celiac disease, non-celiac gluten sensitivity NCGS), or is choosing to eat gluten-free.  You're welcome to join and post any questions.  :)

Caturday Newbie
Caturday
Posted

Hi nvsmom,

Thanks for your reply and your welcome to the board. I really appreciate it. I had my fasting glucose tolerance test last week, so am waiting on the results now. Glad you passed yours. I haven't seen my IGF-1 test results, so am not sure how far outside the normal range I am. I'm hoping not very much. It's interesting that you mention thyroid as I've not looked into that side of things for myself. I was originally diagnosed with mild sorta-PCOS, so have had the reproductive hormones tested, but am not sure if they've checked anything thyroid-wise. A few years ago I did think my thyroid might be overactive due to some other problems. I shall keep all this in mind and thanks again.

nvsmom Community Regular
nvsmom
Posted
  • Author

Hi nvsmom,

Thanks for your reply and your welcome to the board. I really appreciate it. I had my fasting glucose tolerance test last week, so am waiting on the results now. Glad you passed yours. I haven't seen my IGF-1 test results, so am not sure how far outside the normal range I am. I'm hoping not very much. It's interesting that you mention thyroid as I've not looked into that side of things for myself. I was originally diagnosed with mild sorta-PCOS, so have had the reproductive hormones tested, but am not sure if they've checked anything thyroid-wise. A few years ago I did think my thyroid might be overactive due to some other problems. I shall keep all this in mind and thanks again.

 

This article discusses how hypothyroidism can cause lower IGF-1 so I assume it would go up if one was hyper (which I was when I first started natural desiccated thyroid hormones). http://www.clinchem.org/content/50/1/228.full

And another: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2265.1987.tb00842.x/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false

 

To check your thyroid, ask for TSH (should be near a 1 regardless of the lab's normal range), and Free T3 and Free T4 (should be in the 50-75% range of your lab's normal reference range).  The free T3 is probably the most important when it comes to judging if you are hyper - it would be good to get that test run.

 

How are your other pituitary hormones?  Are the rest normal?  

Caturday Newbie
Caturday
Posted

Thanks for those links - bookmarked! Came across a few similar ones last night when Googling thyroid/IGF-1 links. Thanks also for the thyroid testing advice. I know this can be a complicated area in terms of testing and diagnosis, so it's good to have some thoughts on where to begin.

 

I got a letter from the hospital today saying that my IGF-1 levels were "mildly" elevated in the previous blood tests and that the endo has decided to arrange an MRI regardless of the results of the glucose tolerance test, so I guess they're taking no chances, which is reassuring. Re: other pituitary hormones, well, yes and no. The set of blood tests ordered by my GP's surgery in the spring (I'd gone in complaining of worsened hirsutism and growing dependence on those facial oil-absorbing wipes marketed at teenagers) showed high prolactin, though not elevated to the extent that would point straight to a prolactinoma. The prolactin result was the reason for the referral to endocrinology. The hospital ran a new set of blood tests, and by that time my prolactin had gone back down to normal, but was near the high end of the normal range. FSH and LH were normal. Everything else they tested for was also normal (e.g. estrogen, testosterone, etc) apart from mildly high DHEAS.

nvsmom Community Regular
nvsmom
Posted
  • Author

Thanks for those links - bookmarked! Came across a few similar ones last night when Googling thyroid/IGF-1 links. Thanks also for the thyroid testing advice. I know this can be a complicated area in terms of testing and diagnosis, so it's good to have some thoughts on where to begin.

 

I got a letter from the hospital today saying that my IGF-1 levels were "mildly" elevated in the previous blood tests and that the endo has decided to arrange an MRI regardless of the results of the glucose tolerance test, so I guess they're taking no chances, which is reassuring. Re: other pituitary hormones, well, yes and no. The set of blood tests ordered by my GP's surgery in the spring (I'd gone in complaining of worsened hirsutism and growing dependence on those facial oil-absorbing wipes marketed at teenagers) showed high prolactin, though not elevated to the extent that would point straight to a prolactinoma. The prolactin result was the reason for the referral to endocrinology. The hospital ran a new set of blood tests, and by that time my prolactin had gone back down to normal, but was near the high end of the normal range. FSH and LH were normal. Everything else they tested for was also normal (e.g. estrogen, testosterone, etc) apart from mildly high DHEAS.

 

I'm glad nothing is too high for you, but that almost works against you because nothing is as clear cut.

 

I hope that MRI goes well and there is no sign of a pituitary adenoma. Let me know how the OGTT GH suppression test and the MRI goes.  I hope they clear you of any problems and your abnormal labs were just an unexplained blip like mine.

Caturday Newbie
Caturday
Posted

I'm glad nothing is too high for you, but that almost works against you because nothing is as clear cut.

 

I hope that MRI goes well and there is no sign of a pituitary adenoma. Let me know how the OGTT GH suppression test and the MRI goes.  I hope they clear you of any problems and your abnormal labs were just an unexplained blip like mine.

 

Thanks - I'll post here again when I have the OGTT and MRI results back. I know what you mean about the mildly high results...reassuring on one hand but confusing on the other. Hopefully it will indeed just be a blip in the end. 

nvsmom Community Regular
nvsmom
Posted
  • Author

Good luck!  :)

  • 5 months later...
Caturday Newbie
Caturday
Posted

Just updating this in case others find it search engines in the future - I passed the oral glucose tolerance test and my most recent IGF-1 test was barely elevated. So, I still have plenty of it, but it's only just over the line. I'm glad I passed the OGTT but am not sure what to make of all this. PCOS(?)-wise I'm still getting hairier. Sasquatch genes activated? I don't know. My digestion is not great and I often feel feverish with low appetite. Safest thing seems to be not to eat. I have an endocrinology appointment in July. I'll update this thread again if I ever find out more about what-all's wrong with me and whether there's any possible celiac connection.

 

EDIT: forgot to add - no evidence of pituitary tumor either (MRI). That plus OGTT results have been taken to mean no acromegaly, which is great.

  • 3 years later...
notatall Newbie
notatall
Posted

is there original author of this post still active? Have you managed to find out what was wrong in your case? That would help me a lot. Thanks. 

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