The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Human Growth Hormone

Discussion in 'General Treatment' started by TheMoonIsBlue, Sep 30, 2010.

  1. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Yay or Nay to HGH injections if you test very low?

    And the million dollar question- would taking HGH make viral/retroviral infections worse? (Could I be so lucky that someone has already asked an XMRV/Viral doctor this question?!)

    When I was tested a few years ago my HGH levels were comparable to someone 50+ years older than my age!

    Also I've heard low IGF-1 levels in ME/CFS "likely caused by no or poor quality stage 3/4 sleep"----so would low HGH just be another effect of............whatever the H is happening in our bodies?
  2. voner

    voner Senior Member

    I did a six-month trial of hgh (Omnitrope). The only thing the Omnitrope did for me was to further disturb my sleep - which I didn't realize until I went off the Omnitrope. Kind of counterintuitive to me, but that's what happened. I was kind of gung ho on trying hgh for a long time -- I used to follow the research of Robert Bennett from the University of Oregon - who did a lot of research on fibromyalgia and they explored the connection between hgh and somatostatin…. eventually they gave up on it -- I think…. it certainly was an expensive option for me – my insurance wouldn't cover that sort of experiment….

    of course, everybody's body is different......
  3. garcia

    garcia Aristocrat Extraordinaire

    HGH is one of those things that on paper is ideal to try for ME/CFS. But unfortunately the reality was very different for me. It basically caused an acth/cortisol spike in me and so disturbed my sleep, and seemed to completely negate any positive benefits I might have gotten.

    I have read in hormonal circles that if your cortisol is out-of-whack then HGH will just cause cortisol to rise. HGH very much relies on other hormones to be functioning properly before it seems to do its job. As a result hormone specialists tend to add it in last.

    So for someone like me with major endocrine dysfunction it seems to be a no-go.
  4. August59

    August59 Daughters High School Graduation

    Upstate SC, USA
    I'll second this post! - A few years ago, when I was going to Hunter Hopkins Center, Dr. Black and Dr. Lapp strongly felt that all hormones had to be balanced and stable before HGH would present any value.
  5. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Thanks for the replies everyone.

    You both mentioned that it disturbed your sleep- well that's the exact problem I was hoping to help correct! So, sounds like HGH is a no-go for me.
    I am certain my hormones are messed up, but I have no idea what to do about it. All that Gynos suggest is to go on the pill, or take an SNRI/SSRI. (for PMDD/PMS) But then, they don't understand CFS either. I haven't found help from endocrinologists either.
  6. Lynn

    Lynn Senior Member

    I took HGH injections for about two years under Dr. Cheney's supervision. I credited it with getting me back to a minimum activity level. MY GP would not prescribe it for me so when I stopped seeing Cheney, I stopped the HGH. I retained that level of activity for another couple of years even without the HGH.

    Unfortunately, when I tried LDN for 9 months, it dropped me back into barely functioning again. I think about getting back on the HGH, but I would have to spend big dollars to go see Cheney and get the prescription. Also, now that I know about CFS and the possible cancer connection, I am not sure taking HGH is the smartest thing to do since HGH will also stimulate the growth of cancer cells if they are present.

  7. *GG*

    *GG* senior member

    Concord, NH
    Have you tried this website; or perhaps call a cmpding pharmacy and ask which Drs prescribe natural thyroid or something like that?

  8. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Hello :)
    I actually was under the care of a doctor, years ago, who was one of those who thought that all ME/CFS/FM patients would feel better if their Thyroid levels were increased to the high end of normal (my labs were normal-I was in the middle range, TSH, T3 and T4 all tested). Well, that was a DISASTER. It was in the early years of my illness and I had no idea what to do.

    I was prescribed compounded natural thryoid and it made my CFS way, way worse-I was only on a low dose I believe and I went HYPERthyroid and had a three day insomnia episode. Gradually stopping it lead to extreme muscle pain (not present before) and wild emtional swings. I also took testosterone, which was low because I had been on BC pills. And Progesterone. Even though my IGF-1 levels were way low, I was not prescribed HGH, but some natural supplement that was a total waste of money.

    P.S. Lynn- LDN made me so sick also, even tiny amounts. I don't think people with active viral infections can tolerate it well or at all.
  9. srmny



    I began hgh injections during the acute stage (severely ill) of my illness. It made me feel much worse. I continued to take it because my sister had CFS like symptoms and dramatically improved with it. She also lost 3O lbs in just a few months. Every 3 months my dose was increased and I felt much worse for a few weeks. I would just begin to feel better and they would increase my dose. I continued with it because there is not much available as treatment when you are in the stage where you can't tolerate anything- light, sound, smell, sitting/standing up... My sister's recovery gave me hope and I stayed with it. I think very few people with acute CFS would stay on hgh. You are already being tortured by the illness and to take something that clearly adds to the torture is an abnormal response. I think that is why there is no evidence of hgh treatments being successful iin CFS. Patients don't stay on it for very long. In the beginning it really makes you worse.

    My dose is 4mg every day. Had I stayed in NYC with the endo that originally prescribed it I would probably be on a larger dose. But I am in GA and feel lucky to have found a endo that was willing to continue to prescribe it. I was diagnosed and treated for Hashimotos before I was tested for low growth hormone . I was initially tested for hgh and cortisol and my hgh was low but my cortisol was low but not abnormal according to the test. Two years ago I began treatment with small doses of cortisol as well. I hav been injecting hgh since 2000.

    The endocrine system has been just one part of my treatment for CFS. But I believe it is responsible for getting me out of bed and on my feet by correcting my sleep cycle. Although I am still sick, I do have a rewarding if very "small" life.

    I would recommend that all PWC try hgh. Of course, I would not say that for anyone with a history of cancer. I have a benign brain tumor which caused me to suspend my hgh treatment for a year while I was treated for the tumor. I was retested for hgh and again tested abnormally low. Everytime my insurance has changed I have had to suspend treatment and be retested. I always test abnormally low and insurance covers my hgh. Unfortunately, I have never experienced any weight loss with hgh and I do not look younger or feel stronger! My guess is that hgh may have that affect on healthy people but not CFS people.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    its interesting how not many cfsers have found gh helpful. gh is released during deep sleep which alot of us dont get, so u would presume that we would be low in gh and replace it would help. The only thing i can think of is that natural gh comes in burst like deep sleep, exercise and low carb meals, where as injections just give us a big hit all at once. mmm

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