My CFS/ME was GHD

[Gingergrrl]

@Ema or @awkwardlymodern Can you explain what the ITT stim test involves since you have both had it? (Just in the most basic terms for non-science people like me!) I am consistently low on the IGF-1 blood test (since 2013) but would have to find the tests done by my Endo to post the results and get you guys interpretation. I have not had an MRI or anything but the blood tests which show low HGH for my age. I also have Hashimoto's but not sure how this fits in. At this point, I do not want any tests that could potentially kill me (not that anyone does ) but you know what I mean.

 

[halcyon]

IGF-1 102 ng/mL (age 33)

Do you know what the cutoff would be on the high end of that range for your age? I'm the same age and my IGF-1 was 169.

 

[Ema]

@Ema or @awkwardlymodern Can you explain what the ITT stim test involves since you have both had it? (Just in the most basic terms for non-science people like me!) I am consistently low on the IGF-1 blood test (since 2013) but would have to find the tests done by my Endo to post the results and get you guys interpretation. I have not had an MRI or anything but the blood tests which show low HGH for my age. I also have Hashimoto's but not sure how this fits in. At this point, I do not want any tests that could potentially kill me (not that anyone does ) but you know what I mean.

Basically they give you insulin through an IV to drop your blood sugar to around 40. This is severely hypoglycemic. Your body should kick in with cortisol, adrenaline, GH etc to rescue you from this dangerous, emergency state and raise your blood sugar back to normal. If it can't, the nurse has to do it manually with glucose solution.

 

[adreno]

Do you know what the cutoff would be on the high end of that range for your age? I'm the same age and my IGF-1 was 169.

The reference ranges are listed here:

http://www.mayomedicallaboratories.com/test-catalog/Clinical and Interpretive/35099

Your result, and even that of @awkwardlymodern, looks normal, which is puzzling.

 

[Beyond]

If one has high ACTH, this can make IGF-1 look artificially high even in the face of GH deficiency because they share a common precursor pathway.

The stim tests are really what is needed to diagnose a GH deficiency. IGF-1 is not very specific or reliable in the vast majority of cases.

Thanks for the info Ema. That makes sense, what could have made me think I have high Growth Hormone after years of not a single night of restful sleep? Silly me.

 

[adreno]

A related study:

Neuro Endocrinol Lett. 2005 Oct;26(5):487-92.

Decreased dehydroepiandrosterone sulfate but normal insulin-like growth factor in chronic fatigue syndrome (CFS): relevance for the inflammatory response in CFS.

Maes M1, Mihaylova I, De Ruyter M.

Abstract

There are a few reports that chronic fatigue syndrome (CFS) may be accompanied by changes in hormones, such as dehydroepiandrosterone (DHEA) and insulin-like growth factor (IGF1). This study examines the serum concentrations of DHEA-sulfate (DHEAS), IGF1 and IGF1 binding protein-3 (IGFBP3) in 20 patients with CFS and in 12 normal controls. The IGFBP3/IGF1 ratio was computed as an index for IGF1 availability. We found significantly lower serum DHEAS concentrations in CFS, but no significant differences either in IGF1 or the IGFBP3/IGF1 ratio between CFS patients and normal controls. The decrease in serum DHEAS was highly sensitive and specific for CFS. There were significant and positive correlations between serum DHEAS and serum zinc and the mitogen-induced expression of the CD69 molecule on CD3+CD8+ T cells (an indicator of early T cell activation). There was a significant and negative correlation between serum DHEAS and the increase in the serum alpha-2 protein fraction (an inflammatory marker). Serum IGF1, but not DHEAS, was significantly and inversely correlated to age. The results show that CFS is accompanied by lowered levels of DHEAS and that the latter may play a role in the immune (defect in the early activation of T cells) and the inflammatory pathophysiology of CFS.

PMID:16264414

 

[adreno]

DHEA can increase IGF-1, and decrease IGFBP3:

One of the most exciting results of 1990′s DHEA research has been the discovery that it may enhance insulin-like growth factor -1 (IGF-1) release. IGF-1 (formerly called “Somatomedin C”) is the “hidden anabolic power behind the throne” of growth hormone (GH). GH stimulates the liver to produce and release IGF-1. It is the IGF-1 that then circulates through the bloodstream and leads to the anabolic (tissue-building) actions GH gets credit for. (19)

The Morales/Yen study previously referred to under ENERGY & WELL-BEING also found significant increases in both men and women in IGF-1 status. “DHEA replacement induced an approximately 10% rise in serum IGF-1 levels and an approximately 19% decline in IGFBP-1 [IGF-1 binding protein] levels, resulting in an IGF-1/IGFBP-1 ratio by 50% in both men and women.” (19) The authors also remark that the increased IGF-1/IGFBP-1 ratios suggest “an increased bioavailability of IGF-1 to target tissues.” (19)

Yen, Morales and Khorram conducted a one year double-blind placebo-controlled crossover experiment with 100 mg DHEA with 16 men and women, age 50-65 years. A significant increase in IGF-1 levels occurred in both men and women after 6 months’ DHEA treatment, while IGF-1 levels dropped below baseline levels during placebo. Men gained approximately 20% in IGF-1, while women gained about 30% in serum IGF-1. The relative increase in IGF-1 was greater in those with low DHEA-S levels at baseline. (31)

The Jakubowicz study previously mentioned under INSULIN also found a significant increase in IGF-1 from 100 mg DHEA nightly for 30 days. “Serum IGF-1 increased from 96.7 to 183ng/ml (p<0.001). Serum concentration of IGF-1 did not change in the placebo group.” (14)

In the Khorram study previously mentioned under IMMUNE ASPECTS, 50 mg DHEA daily for 20 weeks also led to increased IGF-1. Khorram et al note that “DHEA administration resulted in a 20% increase (p < 0.01) in serum IGF-1m a decreasing trend in IGFBP-1, and a 32% increase in the ratio of IGF-1 /IGFBP-1 (p< 0.01).” (10)

http://smart-drugs.net/JamesSouth-DHEA.htm

 

[Gingergrrl]

Basically they give you insulin through an IV to drop your blood sugar to around 40. This is severely hypoglycemic. Your body should kick in with cortisol, adrenaline, GH etc to rescue you from this dangerous, emergency state and raise your blood sugar back to normal. If it can't, the nurse has to do it manually with glucose solution.

@Ema Thanks for explaining and this test sounds absolutely awful and not anything that I intend to try. It sounds different than the test that my Endo explained in which you have several blood draws throughout the day (but no IV that I am aware of.) Is it possible that there are two different tests to measure this (separate from the MRI portion.)

I am still planning to find my IGF-1 tests from Endo from 2013 to present to see how low my scores really are b/c I am so unclear now what this all means!

 

[A.B.]

@Gingergrrl there are indeed several different tests that can be used. The GHRH-Arginine stimulation test is safe and not unpleasant (unless you hate needles )

 

[xks201]

you dont need an insulin tolerance test to do the gh stim test. now they use arginine or glucagon. some insurance companies require you test with both agents separately. the insulin tolerance test is barbaric and phased out by any endo with half a brain (which rules out most of them). I am GHD but GH gave me some energy but wasn't a cure all.

 

[rosie26]

Just recently I've been able to tolerate walking occasionally without my compression stockings (my POTS was from weakened veins).

Did you have veins bursting under your skin in your hands? I ask because this kept happening to me a lot in the first few severe years of ME.

 

[Ema]

@Gingergrrl there are indeed several different tests that can be used. The GHRH-Arginine stimulation test is safe and not unpleasant (unless you hate needles )

@Gingergirl, I'm not sure what test your endo might have been thinking of but hopefully you will let us know if you ask again.

My insurance company would not accept the arginine test as proof of growth hormone deficiency (they were very clear that only the ITT would do) but I considered having it anyway, thinking that if it showed a deficiency that would make the risk of the ITT seem more worthwhile.

I would just double and triple check with your insurance company what their requirements are so that you don't end up having unnecessary testing.

 

[awkwardlymodern]

@adreno: there is a lot of disagreement between studies and labs re: normal age adjusted IGF-1 ranges. this study, for example, shows my result as abnormally low:

http://www.aem-sbem.com/media/uploads/08_10355_ABEM_545.pdf

In all of the reference ranges however, an IGF-1 of 102 is at the very best low normal, and corresponds to a median value for an elderly woman.

IGF-1 should also be adjusted for BMI, because lower values are expected in obese adults, and higher in thin ones; as I mentioned before, a low IGF-1/igfbp3 ratio suggests that the IGF-1 number is functionally lower. Adjusted for this ratio, my age AND my BMI (17.9), my IGF-1 is far below normal on any scale.

I guess the bottom line as Ema mentioned is that IGF-1 is an unreliable test for GHD. Apparently quite a few GHD patients have IGF-1 higher than mine.

All you can do is look at the overall clinical picture (are signs and symptoms consistent with GHD), evaluate IGF-1 adjusted for age, BMI AND igfbp3. If the results suggest GHD, the only real confirmation is a stim test. I wish my insurance had accepted a gentler one but I'm glad I got my health back!

 

[Gingergrrl]

@Gingergirl, I'm not sure what test your endo might have been thinking of but hopefully you will let us know if you ask again.

@Ema I am going to go through the folder from my Endo (hopefully today) and will post exactly which test he wanted to do as I wrote it all down but do not remember (b/c this was back in 2013 when I first saw him and was diagnosed with Hashimoto's.)

I guess the bottom line as Ema mentioned is that IGF-1 is an unreliable test for GHD. Apparently quite a few GHD patients have IGF-1 higher than mine.

@awkwardlymodern The IGF-1 is the blood test that I had which determined the low growth hormone but my Endo explained as you did why it is unreliable by itself and requires the brain MRI and additional test to confirm. I had had the blood test three times (since 2013) and my numbers were always low except that by the third test they were much higher than the first test (but still low.) When I find the folder, I can post the numbers so I can get real feedback instead of posting all this vague stuff. Hopefully later today!

 

[Gingergrrl]

Here are my IGF-1 tests and tagging a few people to help me interpret them @awkwardlymodern @Ema @adreno

1) In Sept 2013 before I was diagnosed with anything but inappropriate sinus tachycardia (IST) I was tested for IGF-1 by Lab Corp. My score was 90 and the range was 118-298 for my age which was 42 at that time.

2) In Oct 2013 I was referred to my current Endo who diagnosed me with Hashimoto's Disease and re-tested the IGF-1 at a lab called Esoterix. My score had increased to 106 on the same range of 118-298. So still low but moving upward only one month later.

3) In Jan 2015 I was re-tested by my Endo for IGF-1 at Lab Corp but this time their range had changed (I don't know why?) My score was 85 but the range was 62-204. So for the first time, I was inside the range although still on the low end.

I looked back at my notes from Oct 2013 which were vague but my Endo said that if I wanted to pursue HGH, I needed to have a "Stim Test" to confirm as well as an MRI/brain scan. He said it was a "labor intensive" test involving several blood draws but that is all that I wrote down (b/c I did not intend to pursue it at that time!)

I am scheduled to see him next week (I now see him every 3 mos to monitor my thyroid) so I can ask him in more detail what the stim test would involve. I may postpone this appt b/c I have not done the blood work and it is not my top priority but I am quite curious about HGH now. He knows I have ME/CFS now and does not believe that HGH will solve my health issues but he thinks it is possible that it can help some of them?

Thanks to anyone still reading and I would love to hear any comments re: my IGF-1 scores!

ETA: I re-read some of the earlier posts and now I am more confused. Did my third test (in Jan 2015) actually reflect that my score had gone up or is it strictly that the lab reference values had changed and my score had actually gone down?!!!

 

[awkwardlymodern]

Gingergrrl, with those numbers, and depending on your symptoms (are a majority of your symptoms listed as GHD symptoms?) I'd definitely go through with the stim test. I have Hashimoto's too and based on my hypothesis, the infection that triggered thyroid autoantibodies also attacked my pituitary.

Sorry to repeat myself but I would really question your insurance on the MRI. If you have autoimmune damage to your anterior pituitary an MRI probably wouldn't pick that up, especially if it's recent. These MRIs are looking for overt mechanical damage, not immune or chemical causes. Again, my insurance only requires symptoms consistent with GHD; low or low-normal IGF-1 and an abnormal stim test.

About your IGF-1s--

When ranges are re-adjusted, AFAIK usually this is just that--i.e., your IGF-1 went down, from 106 to 85 (not good) but the reference range was simply changed. All the more reason to get the stim test.

I'm no expert on lab test design, but I've also heard that occasionally the lab will introduce a different method for measuring a substance, and that re-shuffles the ranges.

Overall I'd be inclined to think that the range was just adjusted. You could always contact Labcorp to find out.

IMHO I'd compare your symptoms with GHD symptoms, and if the majority are there I'd really try to get the test done.

In my case just about all of my "CFS" symptoms were on Hip's GHD deficiency list, and if the same is true for you that's a big tip-off that you should get the testing done.

Maybe you can find a different insurance that will accept the arginine stim test without requiring the MRI. I have to change my own health insurance soon too it's way too expensive for what I'm getting!

 

[awkwardlymodern]

Did you have veins bursting under your skin in your hands? I ask because this kept happening to me a lot in the first few severe years of ME.

Not sure if you mean bursting as in bulging, or actually breaking open. I wish I'd kept the photos of what my hands used to look like...but there was no blood leaking, just bulging, prominent veins like what you'd see on a bodybuilder, except my muscles were wasting away

 

[Gingergrrl]

@awkwardlymodern

Gingergrrl, with those numbers, and depending on your symptoms (are a majority of your symptoms listed as GHD symptoms?) I'd definitely go through with the stim test. I have Hashimoto's too and based on my hypothesis, the infection that triggered thyroid autoantibodies also attacked my pituitary.

When I next see my Endo I am going to ask him in much more detail what the stim test is called and what it involves. I have learned from this thread that there is clearly more than one stim test and I have no idea which is the one that he mentioned. When I looked at the list of GHD symptoms, some of them do match but a good many of them do not so I am not sure what to make of this. I do have Hashimoto's though and it is unclear exactly when or how I got it?

Sorry to repeat myself but I would really question your insurance on the MRI. If you have autoimmune damage to your anterior pituitary an MRI probably wouldn't pick that up, especially if it's recent. These MRIs are looking for overt mechanical damage, not immune or chemical causes. Again, my insurance only requires symptoms consistent with GHD; low or low-normal IGF-1 and an abnormal stim test.

You are not repeating yourself at all and I am very grateful for the info. I actually do not even have the same insurance as when my Endo gave me that info in 2013 and have no idea what this current insurance would require. I really do not want an MRI and especially do not want the contrast dye as I have recently had two allergic reactions to food dyes. So I will find out for sure what is required.

About your IGF-1s--

When ranges are re-adjusted, AFAIK usually this is just that--i.e., your IGF-1 went down, from 106 to 85 (not good) but the reference range was simply changed. All the more reason to get the stim test.

This is what I was wondering, did my IGF-1 really improve or did it actually get even suckier but they lowered the reference range which tricked both me and my Endo until I read through and compared all the tests last night.

I'm no expert on lab test design, but I've also heard that occasionally the lab will introduce a different method for measuring a substance, and that re-shuffles the ranges.

That is something that I wondered last night as well. My Endo had viewed it as an improvement so it is possible that between 2013 and 2015, Lab Corp changed the way they test and measure the range but I really don't know.

Overall I'd be inclined to think that the range was just adjusted. You could always contact Labcorp to find out.

I intend to find out either from my Endo and/or Lab Corp.

IMHO I'd compare your symptoms with GHD symptoms, and if the majority are there I'd really try to get the test done.

I don't think that the majority are there but definitely quite a few. Are there any that are considered the most crucial in order to match.

In my case just about all of my "CFS" symptoms were on Hip's GHD deficiency list, and if the same is true for you that's a big tip-off that you should get the testing done.

I will look at the list again and count the symptoms b/c now I am very curious and will come back and edit this post. (Am afraid of losing all I typed if I do it first!)

Maybe you can find a different insurance that will accept the arginine stim test without requiring the MRI. I have to change my own health insurance soon too it's way too expensive for what I'm getting!

We just straightened out a long and complex insurance situation so I can't change it but I will definitely find out what they require. I am curious since several doctors have noted my low growth hormone as an issue that was worth testing further. Thanks again for all your help!

ETA: I read through the list that Hip posted and these are the GHD symptoms that match with mine: fatigue and decreased energy, inability to exercise, high cholesterol, increased sensitivity to cold and heat plus cold hands/feet, "heart problems" (but this one was vague and didn't match my extreme autonomic issues), decreased muscle strength and possible low blood sugar.

But when I read the CCC or ICC definitions of ME/CFS, it is actually a much more complete match than the GHD symptoms but I know it is possible to have both.

 

[amaru7]

@awkwardlymodern happy to hear that you had such an improvement, even though I'd like to hear how it will be in the following weeks/months if homeostasis kicks in. I don't want to give you a bad feeling, but honestly there are some things that do work great in the beginning and then seize to function. I had this experience with different interventions I tried.

But HGH is a powerful substance and I believe it could do allot for deficient and suboptimal people. That's why I'm looking forward to try injections soon. I'll get my growth hormone in a week or so. So I'm looking forward to that.

Hopefully I can achieve the same results as you did, that would be wonderful.

Here's my thread.
http://forums.phoenixrising.me/index.php?threads/cheney-on-growth-hormone.36293/


PS :if you can post up what symptoms you were suffering and what you got now as a result of your gh replacement therapy that would be great to get like a before/after picture.

Like did you really have most of the gh deficiency symptoms that hip listed cured? That would be amazing to hear.

 

[SDSue]

By the way, in this post I list a comprehensive set of symptoms that occur in human growth hormone deficiency. Did you manifest many of those symptoms as well?

Does anyone else have all these symptoms? It sounds so much like ME/CFS that I'm surprised we aren't tested routinely. It's been added to my (never-ending) list. Thanks @awkwardlymodern for sharing your story!