FM/CFS: Study Suggests Human Growth Hormone is Effective

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Slayadragon, Dec 9, 2007.

  1. Slayadragon

    Slayadragon New Member

    Growth hormone as concomitant treatment in severe fibromyalgia associated with low IGF-1 serum levels. A pilot study.

    BMC Musculoskelet Disord. 2007 Nov 30;8(1):119 [Epub ahead of print]

    Cuatrecasas G, Riudavets C, Guell MA, Nadal A.

    PMID: 18053120

    ABSTRACT:
    BACKGROUND: There is evidence of functional growth hormone (GH) deficiency, expressed by means of low insulin-like growth factor 1 (IGF-1) serum levels, in a subset of fibromyalgia patients. The efficacy of GH versus placebo has been previously suggested in this population. We investigated the efficacy and safety of low dose GH as an adjunct to standard therapy in the treatment of severe, prolonged and well-treated fibromyalgia patients with low IGF-1 levels.

    METHODS: Twenty-four patients were enrolled in a randomized, open-label, best available care-controlled study. Patients were randomly assigned to receive either 0.0125 mg/kg/d of GH subcutaneously (titrated depending on IGF-1) added to standard therapy or standard therapy alone during one year. The number of tender points, the Fibromyalgia Impact Questionnaire (FIQ) and the EuroQol 5D (EQ-5D), including a Quality of Life visual analogic scale (EQ-VAS) were assessed at different time-points.

    RESULTS: At the end of the study, the GH group showed a 60% reduction in the mean number of tender points (pairs) compared to the control group (p<0.05; 3.25+/-0.8 vs. 8.25+/-0.9). Similar improvements were observed in FIQ score (p<0.05) and EQ-VAS scale (p<0.001). There was a prompt response to GH administration, with most patients showing improvement within the first months in most of the outcomes. The concomitant administration of GH and standard therapy was well tolerated, and no patients discontinued the study due to adverse events.

    CONCLUSIONS: The present findings indicate the advantage of adding a daily GH dose to the standard therapy in a subset of severe fibromyalgia patients with low IGF-1 serum levels.

    Trial Registration: NCT00497562 (ClinicalTrials.gov).

    Note: The full text is available free of charge at
    http://www.biomedcentral.com/content/pdf/1471-2474-8-119.pdf

    <br>[<i>This Message was Edited on 12/11/2007</i>]
  2. roge

    roge Member

    Thanks Lisa

    ya saw that as well, no surpirse to me.

    dr. bennet is also currently doing a study on a drug that stimulates the release of HGH, I really hope that finishes soon and hads favorable results, I believe it will.

    been a long process (2 years) for me (3rd endo now) to try and get treated for my low IGF-1. getting a HGH stim test soon.

    rediculous the lengths we have to go to with these diseases.

    peace
  3. Slayadragon

    Slayadragon New Member

    What's been involved in getting the stim test?
  4. erica741

    erica741 New Member

    You've mentioned before that human growth hormone has helped your symptoms, particularly your insomnia. How do you get it? Is it a prescription? I'd like to look into it, but have no idea where to start.

    As always, thanks for sharing your research and experiences with us!

    Erica
  5. munch1958

    munch1958 Member

    FFC testing showed my IGF-1 was low but all they offered was a $22 supplement that didn't work.

    LLMD suggested HGH. Insurance wouldn't pay. They suggested endocrinologist. They would pay if I flunked the test.

    Endocrinologist bet one fancy beer that I would pass the test. I flunked. He's never paid up on the beer either.

    There's a post here that I wrote in August 2007 about the stim test. Search for HGH and stim test.

    I had to go off HGH for 2 weeks. My IGF-1 fell back down. It ended up being a month by the time the results were in and the endo wrote the Rx and my injectable division of pharmacy provider mailed it to me.

    My current dose is .04 mg which is two Norditropin Nordiflex 10 ml pens per month. I'd pay $1,150 CASH for this much HGH. No wonder insurance puts up a fight.

    The CEO gets $22 million a year for a salary but I had to fight for HGH. Within 3 days, I knew it was the essential thing I was missing.

    My crying jags and feelings of gloom and doom left for the first time ever. They came back when I stopped HGH for the stim test then went away again.
  6. roge

    roge Member

    hi

    what has been involved is mainly being bounced around from crappy Endo to endo, finally my ID dr. referred me to a pretty good one (not necessarily meaning an out of the box thinker or so I think at this stage as only seen her 1x ) but just that she is at least taking my low IGF-1 some what serious and now ordered a hgh stim test.

    I just posted a new thread about my experiences and a few questions for Munch.

    peace
    <br>[<i>This Message was Edited on 12/11/2007</i>]
  7. Slayadragon

    Slayadragon New Member

    Do you know anything about urinary HGH levels? Do endos take them seriously?

    I've never had a low IGF-1 level (at worst I've been "very low normal"), on or off HGH.

    However, my 24-hour urinary level was below normal.

    Dr. Cheney says that normal IGF-1 but low urinary HGH is what he almost always finds in his patients.

    Of course, even the most liberal endos (like Linda's) don't think that CFS is relevant to HGH, so I wouldn't be inclined to bring up Cheney's findings in an appointment.

    It would be good if endros "believed in" the urinary levels though.

    My insurance never has not paid for a test, and so I imagine they'd pay for a stim test regardless of what my other test results were. I will need to check though.

    I've yet to pry out of them what their requirements for covering HGH are. So far the only thing I know for sure is hypopituitary dwarfish, but it can't be right that they don't cover low HGH in adults at all. That's a recognized disorder, and they cover every other drug when used for approved purposes.

    Are there other tests than the stim one that they might require though?

    Also, Linda, would you give me the name of your endo? He seems pretty reasonable as people in that field go.

    thanks for your help!!!
  8. Slayadragon

    Slayadragon New Member

    Are crying jags and feelings of doom and gloom almost always experienced with severe enough HGH deficiency to flunk the stim test?

    Those aren't my current symptoms, though I have had them periodically in the past (e.g. before I started using the anticonvulsant mood stabilizer Lamictal).
  9. roge

    roge Member

    Hi Lisa,

    I did notice your low HGH urinary level from your most recent thread (just have not had time to comment) but i was planning on commenting as I find that interesting how your IGF-1 is normal , yet low HGH in urine, to me that seems odd as IGF-1 is made from HGH or that is what I have read, of course I am far from a HGH expert. The idea that HGH could be low but IGF-1 normal seems contradictory. Although with research, I did read that IGF-1 while usually correlating with HGH, this is not always the case. maybe the HGH urinary test is not very accurate?? and maybe your HGH levels are actually ok as per your ok IGF-1, hard to say I guess.

    I have not had a urinary HGH myself, just had cortisol and some other hormones a few weeks back, wish I had told the dr. to do HGH (boy we need personal assistants to help us when we see dr.'s to keep track of everything)

    Lisa, I'm not sure how an endo would feel about your ok IGF-1 as seems that is what they use to decide if they order stim test. but maybe low HGH urinary would be good too, i dont know. also though, your IGF-1 might be ok now as you are on HGH, I wonder what it would be if you were not as I believe you said it was low in the past.

    I know Linda mentioned some 20 page flow chart she got from her insurance co. outlining all the rules in order to get HGH funding. what a joy.

    All I got so far was a 1 page standard form that my Endo would fill out with some questions and at bottom it says what lab tests were done and what are the results? It doesnt specificially state what tests are required but sounds like based on my Endo's experience in Canada anyway that one needs to fail a stim test to get coverage, cause if not, they cant dx you with adult HGH deficiency. and at top of form it says " for coverage to apply, the drug must represent reasonable treatment of the disease or injury upon which your claim is based". of course as usual with insurance, lots of ambiguity here, I guess would need the actual policies or contract or whatever to know exactly what I need to be approved. Now I need a 2nd asisatnt to take care of that and dealing with the insurance side, just rediculous.

    Thus , I would suspect any insurance company would say HGH is not reasonable treatment for FM and ME/CFS cause there are no big studies done yet (yes a few small ones for FM).

    But if get a adult HGH deficiency dx, then odds are much greater would think to get coverage and need to flunk a stim test to get that dx. I would suspect I would need the dx by an Endo too but I guess just depends on each insurance company.

    i am not aware of other tests that insurance would deem appropriate in order to get coverage. I can't see an insurance co. requiring more than a stim test as that seems to tbe the golden standard.

    I find it laughable really as many drugs are used off label and insurance has no problem funding, yet we have a drug (rather a hormone) that can help some with FM and ME/CFS dx's, but we cant use it off label cause the drug costs so much and so the insurance company's profits would go from 5.4 billion to only 5.1 billion, so once again all about $$ here, disgusting.

    peace




    <br>[<i>This Message was Edited on 12/11/2007</i>]
    <br>[<i>This Message was Edited on 12/11/2007</i>]
  10. Slayadragon

    Slayadragon New Member

    My doctor is a specialist in CFS and uses a wide variety of treatment approaches.

    He really likes human growth hormone and uses it frequently in combination with antivirals. (Supporting adrenals is even more important with AV usage, he feels.)

    Unfortunately, HGH is misused by body builders. It thus has gotten a bad reputation in recent years. insurance companies are reluctant to pay for it, and most doctors are unwilling to prescribe it.

    In NY state it's even illegal for anyone other than an endocrinologist to prescribe it.

    I know that some of the FFC's (at least Dallas and Philly) do use it, which is perhaps the best thing to be said for them. Apparently some Lyme Literate MD's do as well.

    Dr. Cheney started talking about HGH about five years ago. He said that his patients' levels were very low but that they tended to be able to tolerate only small amounts of it.

    I found that to be the case myself at the time. (I tried taking it about a year before he started talking about it.) It felt to me like it was channeling all my available energy to 'repair' (which is what hgh does), leaving me none to do anything else.

    I started taking HGH after being on Famvir for about four months. (I had as much die-off response from Famvir as most people do from Valcyte, and so view it as pretty much the same.)

    Oddly, i not only could tolerate it then but benefited from it tremendously. I started being able to sleep and got much less weak.

    My doctor said later that it is his experience that decreasing viral load can allow people to tolerate hgh better.

    Some other info about HGH is on a post that roge started yesterday or today....
  11. munch1958

    munch1958 Member

    My dose is .4 mg per day of Nordiflex Norditropin. I get two blue pens (10 ml each) each month. I have Express Scripts with Cura Script for injectables.

    http://www.norditropin-us.com/hcp/norditropin.asp

    I get confused with converting HGH units to mg. I like the pen a lot and wish heparin was in one too. I've got the heparin package insert and am writing the manufacturer a letter.

    I wipe the end of the pen with alcohol. Screw on a needle tip. Dial up my dose. Do an air shot. Wipe my arm or leg. Stab. Push the button. Done! Takes seconds. Does not hurt or sting like heparin.

    I went to one of those marketing survey things on HGH delivery devices. Got paid $175 to talk HGH. Flunking the stim test sure has benefits!

    This is where I got to see other manufacturers products.
    When I saw what others are using I'm glad I have the pen. Wow - lots of complicated steps.

    For travel purposes, I ran down one of the pens to almost empty saving either .4 or .8 or 1.2 for my trip. There is a dose dial on it. You can't inject more than what's left in the pen.

    My dose was raised from .2 (IGF-1 rose to 178). I went off HGH for a month. It fell down to 99 using the Esoterix scale for my age group 41-50y normal is 118-298. My endo says they have the most sensitive test for IGF-1.

    On .3 it was 153 after being on that dose from 9/5/07 to 11/9/07. I felt like it was not climbing and bumped up my appointment a few weeks. It was like I hit a wall and stopped improved and was sliding backwards a little.

    Now my dose is .4 mg per day. I go back in Feb to see endo in Feb. My LLMD thinks this will be an adequate dose. He also thinks one I get IGF-1 to normal it can be dropped to .2 mg per day.

    My pathogens are: Babesia, Borrelia, possible Bartonella, Candida, Chylamydia Pneumonia, and EBV. I keep saying this over and over but repetition is the core of memory.

    Most infections set off the hypercoagulation cascade. The end result of chronic infections could very well be low IGF-1 and growth hormone deficiency. After an extended length of time we all seem to collect more pathogens.

    I've posted this article several times but here is the link again:

    The Role of Growth Hormone Deficiency in Chronic Illness

    http://www.worldhealth.net/p/349,1483.html

    I found an endocrinologist by calling The Magic Foundation in Oak Park, IL. They have a database of doctors for kids but many see adults. My endo is one of their advisors.

    http://www.magicfoundation.org/www/docs/105/adult-growth-hormone-deficiency-adults

    Doesn't this list of symptoms of low growth hormone status sound just like CFS/FM/Lyme/ME??????

    http://www.hgfound.org/res_adultsgrowthhormone.html
    Adult Growth Hormone Deficiency

    Signs and Symptoms of Adult Growth Hormone Deficiency
    A decrease in the level of growth hormone in adults may result in:

    Signs

    weakened heart muscle contraction and heart rate
    increased arterial plaque and blood pressure
    elevated lipids or fats in the blood:
    cholesterol
    low density lipoproteins (LDL)
    triglycerides
    decreased exercise capacity due to decreased cardiac output
    decreased energy due to decreased metabolic rate
    abnormal body composition:
    increased abdominal obesity (waist to hip ratio)
    decreased bone density due to decreased synthesis of bone
    increase in fractures and osteoporosis
    decreased muscle strength and muscle size
    decreased lean body mass
    increased fat mass
    low blood sugar:
    dizziness or fainting
    weakness or tiredness
    headaches
    poor concentration or memory

    Physical Symptoms

    lack of energy or fatigue
    decreased sexual desire
    muscle weakness
    sleep problems
    weight gain
    Psychological Symptoms

    shyness
    withdrawal from others
    nervousness or anxiety
    problem with sleep quality
    decreased social contact
    sadness or depression
    feelings of hopelessness
    Diagnosis / Criteria
    Adult Growth Hormone Deficiency (AGHD) is a condition in adults caused by the low or lack of secretion of somatotropin by the anterior pituitary gland. Somatotropin is another name for growth hormone. Hormones are chemical messages produced by special cells in glands and other organs of the body. A syndrome is a set of signs and symptoms that occur together and result from the same cause.

    A single measurement of growth hormone levels is rarely useful, since growth hormone concentration is normally low most of the day and is released in pulses, not a steady secretion. Therefore, a lack of response to standard growth hormone stimulation tests is required for accurate diagnosis. The diagnosis of AGHD also requires a prior history of any childhood growth hormone deficiency or a history of organic pituitary disease. After a review of all criteria, an adult endocrinologist will make the diagnosis.

    Growth Hormone Replacement Therapy
    Growth Hormone Replacement Therapy (GHRT) is recombinant (biosynthetic) human growth hormone (rhGH). The goals of GHRT are to restore to as great an extent as possible, normal body function, including energy, metabolism and body composition. The importance of growth hormone in adults was recognized in the late 1990s.

    The Pituitary Gland and the Hypothalamus
    The pituitary gland, known as the "master gland," produces several hormones that control the functions of other glands. It is located in the middle of the skull below the part of the brain called the hypothalamus. The pituitary gland secretes its hormones in response to a chemical message from the hypothalamus, the part of the brain to which it is connected. The pituitary gland has two distinct parts: the anterior (front) lobe and the posterior (rear) lobe. The anterior lobe produces six major hormones: one for the production of breast milk, two for reproduction, one for thyroid function, one for adrenal function, and one is somatotropin, which influences growth and metabolism (chemical and physical processes to maintain life). The hypothalamus stimulates the hormone release from the anterior pituitary; these hormones then act elsewhere in the body. When the pituitary gland is removed or destroyed, hormone secretion is lost. When one or more hormones are lost, this is known as hypopituitarism; when the pituitary gland is completely removed or destroyed and all hormone secretion is lost, this is referred to as panhypopituitarism.

    Signs and symptoms of hypopituitarism depend on the specific hormones that are lacking. The amount of somatotropin (growth hormone) produced and secreted normally goes down with age. The decrease of somatotropin in children results in failure to grow; with a decrease of somatotropin in adults, the symptoms are subtle but measurable. Growth hormone (somatotropin) is often the first hormone to be lost or reduced in pituitary and hypothalamic disorders.

    Causes of Hypopituitarism Location of the hypothalamus and pituitary gland
    Congenital or acquired

    Inflammation
    Surgery
    Radiation
    Autoimmune disease








    Coping with Adult Growth Hormone Deficiency
    Having adult GHD can mean you experience several different symptoms, many of which directly affect your mood and emotions. This is thought to occur because growth hormone (GH) plays an important part in managing psychological feelings besides helping childhood growth and other physical processes to occur. The most commonly reported symptoms reported by people with AGHD are listed above. Not everyone with AGHD experiences all these conditions; but if you do, there are effective therapies and treatments available to you.

    Getting help with these types of problems.
    You should feel comfortable talking to your primary physician and an endocrologist about any of signs and symptoms of AGHD you experience to determine whether evaluation is appropriate. In addition, AGHD persons who have depression or anxiety may benefit from psychotropic medication, or from a type of counseling called cognitive-behavior therapy in which the individual learns to change their feelings by reorganizing and reframing their dysfunctional thoughts. Support groups are also helpful to many people. Combinations of these therapies have been shown to work most effectively.

    For further information on counseling:

    American Psychological Association
    (800) 368-5777

    American Psychiatric Association
    (800) 245-3333

    Contributions made by:

    Lorraine Sosnowski, BSN, CRNI
    Ann Arbor, MI

    Brian Stabler, Ph.D.
    UNC Chapel Hill, Chapel Hill, NC

    Michael O. Thorner, M.B., D.Sc.
    UVA Health Sciences Center, Charlottesville, VA

    Reviewed by the HGF Education Committee

    Copyright © 1998 Human Growth Foundation
  12. munch1958

    munch1958 Member

    NO HGH in urine. It was so low it could not be measured.

    Blood IGF-1 low.

    My symptoms: fatigue, feeling of gloom and doom, finding fault with everyone and everything, very critical of others, felt like I was missing a hormone or nutrient, my hair was thinning, bigger belly, slack muscles, thin and dry skin, exhausted, didn't like the world, was very isolated. Had trouble making eye contact. Would not call anyone or answer the telephone.
  13. cah027

    cah027 Member

    Sorry to dig up this old thread but google brought me here. I had a low 24 hr urine hgh test it was 739, with the same normal range you listed (must be the same test) I can no longer afford to go to the Dr that gave me the test as he does not take insurance. I am wondering if a regular endo will recognize this test? My IGF-1 test have been up and down. One being 119 and another being 186 over the past 6 months. So I have normal IGF-1 but low urine hgh. I have felt very bad for a few years now. I am almost to the point were I can't get out of bed. I am always tiered and fatigued. I'm in Indy,can you tell me the dr that put you on hgh? Any help could literally be a life saver for me.. Thank you...&lt;BR&gt;
    &lt;BR&gt;